Calling all triple negative breast cancer patients in the UK
Comments
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Hello sam52
Thank you for your post and for your very kind words. They mean a lot to me, as you will always be special after all we went through together.Thank you for your kind words about the thread. I am so glad that you enjoy reading the posts. It is very important to me that I make this thread one of quality and I do devote a lot of time to it. It makes me happy to think that I am helping people. Even though you are not triple negative, we both know that the standard treatment is basically the same, even though the receptors are different.
I do hope you are well and that all is well with your family members.
You are also an inspiration on this thread as in October it will be eleven years since your diagnosis. That is so encouraging to all of us, whatever kind of breast cancer we have.
I do realise that you have a very busy life, what with one thing and another. I imagine it has been pretty difficult in the allotment and your garden with the very strange weather we are having. The nurseries here are full of unsold summer plants. We have had a couple of nice days in Exmouth, but this evening it is pouring down with rain!!!
That is all for now.
Love
Sylvia
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Hello everyone
I know that since I began the thread a lot of those posting have expressed a great interest in food and diet, so I thought a snippet of information about certain foods that I found in one of the newspapers this week would be of interest.The article was entitled 'Happy couples' and was about foods that are better for you eaten together. The advice was to serve broccoli with tuna to boost cancer protection. It was about combining the mineral selenium (found in tinned and fresh tuna) and the plant chemical sulphoraphane (in broccoli) to protect your cells better against becoming malignant than either of these compounds can protect yourselves when eaten separately.
Apparently, a study published in the journal Food Chemistry in January found that selenium and sulphoraphane work together to boost expression of a gene that protects cells against the type of free radical cell damage that is thought to lead to cancer.
Other good sources of selenium are Brazil nuts, poultry, seafood and mushrooms, which you could team with brassica vegetables rich in sulphoraphanes, such as cabbage, watercress, Brussels sprouts and broccoli for optimal effectiveness.
We all know the importance of selenium and sulphoraphane, so this is an easy way of protecting ourselves against possible cancer. Our food is one aspect of our lives over which we have a bit of control.
Happy eating.
Reading some of the threads, I get the impression that a lot of women apparently think that breast cancer is passed down only through females. My understanding is that this is not the case. Your male members can be the ones who have passed this through families.
I hope you are all having a good week. I shall be glad when the football madness is over.
Take care.
Best wishes.
Sylvia
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Hi Sylvia,
Thank you for your kind words to me. Congratulations on your 7 year anniversary! You do give hope to those of us more recently diagnosed with TNBC. I hope today finds you well.
I hope that your neuropathy will lessen with time. Mine seems to have gotten worse. I see a wonderful pain management specialist at my cancer center and she has taken my complaints seriously. I have rather debilitating arthritis in my joints that wasn't there before chemo and she has told me that she has several breast cancer patients who have the same complaint. For the neuropathy, she has prescribed Lyrica (I think that's what linali was posting about). I never filled it because I have heard some negative things about it and frankly, I seem to get the dreadful side effects from medicines and I'm too nervous to risk it. There are many who swear by it and it seems to be a case of it working very well for those that it does benefit, but if you're not in that group, there are some serious adverse reactions.
I agree wholeheartedly about the long-term effects of treatment. I feel like I live with it each day. As for the possibilities of new cancers or recurrences as a result of treatment, that scares me quite a lot. Are you familiar with the story of Robin Roberts--the American news journalist from Good Morning America who was diagnosed with TNBC a few years ago? She went through treatment and appears to be NED of TNBC, but just released the news that she now has myelodysplastic syndrome that is reportedly due to her TNBC treatment. She is about to undergo a bone marrow transplant and more chemo. I understand that we have to treat the breast cancer with what is available and deal with the side effects later because with TNBC, the sheer aggressive nature of the disease means you run the very real risk of not being around to battle long-term effects if the cancer is not dealt with. I just hope we can get to a place where we have better treatments. While I'm envious of those who have treatments such as anti-hormonals, aromatase inhibitors, and Herceptin in their arsenal, I know that those come with their own array of problems. I saw your conversation with linali about blood sugar and I fully believe that for some (like me), it is at least a contributing factor for the development of TNBC. I have a condition called Polycystic Ovarian Syndrome (PCOS) that has plagued me for years. I'm 35 and started noticing it in my early 20s. It caused painful periods, unwanted hair growth, hair thinning, excess weight, depression, anxiety, insomnia, breast abnormalities, elevated blood sugars, uric acid kidney stones, and allergies. I got the weight under control and was actually underweight when I was finally diagnosed with PCOS. The majority of women with the condition are obese and diabetic. It causes insulin resistance (metabolic syndrome) and increases androgens in the body and throws off the hormones. My sugars were WAY off when my tumor was growing and I didn't know it yet. I thought it was due to a pre-diabetic condition finally surfacing because of the PCOS; I never imagined it was breast cancer. Interestingly, researchers are now finding Androgen receptors (AR) and Prolactin receptors (PRLR) on many TNBC tumors, which would do away with the "Triple Negative" term. Because many people like me who have ovarian conditions get breast cancer and PCOS is linked to excess androgens, I feel it is highly likely if more pathology labs implemented testing for androgen and prolactin receptors, many of us would be able to have more specific diagnoses--with more targeted therapies. There are studies in the US and Canada about using the diabetes drug Metformin to help cut the chance of recurrence--especially in TNBC. I got my general practitioner to prescribe it when I took her some of the publications of research. It lowers the blood sugar and also helps reduce the circulating androgens, so it seems to show some promise. Forgive me if you are already aware of this info, I wanted to post it incase someone is interested.
What you posted about the British study is interesting. It goes to show that we really have no idea yet about the true nature of breast cancer and the path of disease progression.
Warm Regards,
Betty
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Good morning Sylvia xx congratulations on your 7 years clear!
I wonder if there is any advice that could be given to me please..as you know i have had two treatments of EC then it was stopped...the first chemo i had a 5 week wait in between them..now it is only 4 weeks since my last one! Since last week my tumour/tumours have grown at a HUGE rate! I see a new surgeon next Tuesday and have a pre op assesment on the same day...i am extremely worried about the surgery..now that the tumous have grown and not shrunk..also my energy levels are not coming back up either..and i cannot go out on my own..all my veins have now collapsed too! I have only just started to take painkillers as i am against them when i am still newly diagnosed...and my face now looks like wax..i infact ..do look quite poorly which i find upsetting..and wonder if i am now at stage 4..
What sort of questions should i be putting to my surgeon i wonder? i have sent myself an email listing some questions..but you always feel ..have i missed anything out kinda thing!
Last night was my first bad night since diagnosis..i have always slept like a baby..very lucky i know!
I also know that my ONC and doctors/surgeons have never been quite honest with me...i realise once the breast is off ..they will know exactly what they are dealing with..but i hear the Path report is more informative than what the surgeon..says to you!
Thank you for reading this..much appreciated!
Dulcie xxxx
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Oh Dulcie
I am so sorry you are having all this worry. I am not sure why your chemo was stopped, but am guessing it was due to severe side effects? Please do not worry that because you are feeling so bad you have progressed to stage 4 - I am sure it is because of the chemo, which had really debilitating effects for me, and for many others too.You probably need to build yourself up now - some kind of tonic (name's gone out of my head...but ask in the chemist : it's a brown liquid and has some iron in it) will give you some energy hopefully.
It sounds as though the surgery should be done ASAP and as you rightly say, a better assessment can then be made of the situation.Why do you think the medical people are keeping something from you? I think I would address this with the new surgeon when you see him next Tuesday.
Meanwhile - is there a breast care nurse at the hospital you could talk to (even if over the phone) to discuss your worries? That is what they are they for.
Deep breath - you will get through this.
Take care.
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Hello LintRollerDerby (Betty)
Thank you for your post and your kind congratulations. Although it is seven years ago since diagnosis, I still so clearly remember everything. I do feel fine, but there is always that nagging doubt about what is going on inside your body.It is strange about neuropathy because it is supposed to be about numbness mainly in the hands or feet and yet you do feel something. It is not exactly pain that I feel, but a certain strangeness under the foot that feels as though you are walking on glass or crumpled paper. There is a certain stiffness underneath the feet also. There is no doubt that it is the taxane that causes this. My oncologist, who is totally dedicated and always goes that extra mile, told me it was due to docetaxel (Taxotere). I am surprised that some women are being given medication for this because my GP, oncologist and even the podiatrist who diagnosed peripheral neuropathy, said there was nothing to be done about it. From what you said in your post, it looks as though chemotherapy causes arthritis and people tell me that the pain from that is awful. I shall certainly look up Lyrica, although I am very much against medication and do not take anything at all, as I feel they all have side effects, especially when you are taking a lot of different pills. I can understand why you decided not to fill your prescription for Lyrica.
I think we all know that the present standard breast cancer treatment of surgery, chemotherapy and radiotherapy are lethal and that the long term side effects of these can come back to haunt us, but in the meantime the treatment gives us years of life. Like you, I am very afraid of new primaries, recurrence or metastases, but somehow we have to get on with our lives. We can never have complete peace of mind.
I was most interested in your information about Robin Roberts, the American news journalist from Good Morning America, who was diagnosed with TNBC a few years ago. I was not familiar with the term myelodysplastic syndrome, but I see that it is a form of leukaemia, and I have read in the past that chemotherapy and/or radiotherapy can cause leukaemia many years after treatment. It is awful that this woman will be subjected to a bone marrow transplant and more chemotherapy. How can it be that more chemotherapy is to be used when it is well known that it is lethal. I was reading recently that chemotherapy cures very few cancers and that it cannot cure hard tumours like the carcinomas we have in breast cancer. Later I shall try to post a chart which shows what happens to normal cells and cancer cells after each dose of chemotherapy. At the end of treatment normal cells are nearly back to normal and cancer cells are very much diminished but they have not completely disappeared. I suppose that is why we have radiotherapy to mop up any stray cells. I have also read that the blood cancers, leukaemia, can be cured my chemotherapy, so I am hoping that Robin Roberts may well be cured.
It is true that with an aggressive cancer like TNBC, or indeed any cancer that has a hard tumour, we just have to put up with the treatment. I do wonder whether just surgery could put us into remission. So many people in the past just had surgery. Like you I hope we can get to a point where we can prevent this disease or find treatment that is not so lethal.
I do not feel envious of those with hormonal receptors and are put on anti-hormonals, aromatase inhibitors or Herceptin. All of these have lethal side effects and have to be taken for years. There are also women for whom these do not work. At least, not having anything to take, gives our immune systems and our bodies time to recover.
I was most interested to read about your point of view that problems with blood sugar levels could be a contributing factor to breast cancer, including TNBC. I have read in the past that diabetes and metabolic syndrome are considered risk factors in the development of breast cancer.
I know very little about the condition called Polycystic Ovarian Syndrome (PCOS). It obviously has a lot of symptoms. Some of these could be attributed to other conditions. I was wondering how your doctor arrived at the diagnosis. Were some of the conditions you had stronger than others in arriving at the diagnosis? It must be quite an ordeal for you to tolerate this condition and to have tolerated it for so long. Do some of the symptoms come and go?
If anyone reading the thread suffers from this condition it would be useful to let us know.
I was really interested to learn about Androgen receptors and Prolactin receptors being found on many TNBC tumours, which would do away with the triple negative term. Were you told about these receptors when you were diagnosed or did you get a pathology report with these receptors mentioned? I agree with you that we should be told if we have these receptors, which would be more detailed information than just being told we are TNBC and that this might lead to targeted therapies. I have no idea whether Metformin is in current use here as a breast cancer prevention. I understand that it is a drug that has nasty side effects. I knew about Metformin lowering blood sugar as I know various people with diabetes, but I wonder if the effect wears off as they tend to end up on insulin and insulin causes you to put on weight around the middle, the very thing that you do not want to do. I did not know about its helping to reduce circulating androgens. I feel as though I am going to do some more research on all of this.
I was glad to know you found the article interesting about combining certain foods in order to combine certain minerals.
Thank you, Betty, for such a valuable and informative post. It is good to have educational information on the thread. I do so want this thread to be of high quality at the same time as supporting and comforting women at all stages of this disease and post-treatment.
With very best wishes
Sylvia0 -
Hello Dulcie and sam52.
I am going to take a break but I shall be responding to your posts later on today.
Best wishes
Sylvia
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Hello Dulcie
Thank you for your post and for your kind words.I am so sorry, Dulcie, that you are having such a trying time. I do remember that you had only two treatments of EC and then it was stopped because you were feeling so unwell. It is usual on one regimen of chemotherapy to have it every three weeks, but some now have a lower dose every week. With the three-weekly one that I had, which was also EC, they gave you enough time for your blood counts to pick up. After your first chemotherapy you had a five week wait, which is quite a long time, but this would have been done because you were not feeling well. You have now gone four weeks since the second dose, which again is longer than usual, but it would be because you were not well. Normally you would have had your third dose by now, but your oncologist has obviously decided otherwise. If I were you I would have the surgery as soon as you possibly can, especially as the tumour is very rapidly increasing in size.
When I was first diagnosed, my tumour was large and, as so often seems to be the case with TNBC, it seemed to come from nowhere. I delayed quite a long time before I decided to have the treatment and during that time the tumour grew and my breast was very swollen. The tumour actually started to break through the skin of my right breast. This was called a fungating tumour. The consultant had told me this might happen and that it might begin to smell. I decided to get treated and was told I would have chemotherapy first to try to shrink the tumour. It did shrink a bit but I did have a 6 cms plus tumour. After six months of chemotherapy my breast cancer consultant performed a
mastectomy and removed seven lymph nodes of which just the first one, the sentinel node, was affected. Despite that large tumour and the breaking through the skin, I had successful surgery and an excellent pathology report, before I began radiotherapy. If I were you I would ask to have surgery within days after your pre-op. Have you been given a choice between a lumpectomy and a mastectomy? There are different opinions on this, but I am in favour of mastectomies.I feel that with surgery over and the tumour out of your body, you will be able to pick up strength and have some radiotherapy and perhaps chemotherapy if your medical team think you would benefit from it.
You need to find a way to pick up strength through good nutrition and perhaps a bottle of tonic that you can find in Holland and Barrett, good natural food stores or pharmacies.
You say that your veins have collapsed. Is that from the two doses of chemotherapy or from blood tests? It could be that you need something like a blood transfusion to increase your red blood cells or some iron tablets or iron in liquid form. I took iron tablets all through my chemotherapy and managed to keep my red blood cells at normal levels. You might want to take some vitamin C with the iron.
I was looking back at some of your posts and realised that you are going to have a mastectomy. I think that is a good decision.
It is not surprising that you feel you are not looking your best. Cancer treatment can take a great toll on the body. Try to get through the surgery and then start to build yourself up.
It is not surprising that you are not sleeping well. You have far too much going through your head. Try to relax and rest as much as you can and keep yourself hydrated with plenty of water. I know from my breast consultant surgeon that it is important to go to surgery well hydrated. A mastectomy should be quite straightforward and should not give you a lot of pain. I was in hospital for five days and had no pain. I stayed until the drains they put in were completely clear. I have heard that patients are sent home much more quickly now. Before I left a breast care nurse came to see me and gave me some 'softies' to insert into my bra until everything was healed. I chose to wear those for quite a long time before getting measured for a lightweight prosthesis. There is nothing to be afraid of with the surgery.
Take sam52's advice. She is a well informed and gentle woman has survived breast cancer for more than ten years.
Post as much as you like. It is not good to bottle up all your feelings.
Thinking of you and wishing you well.
Sylvia0 -
Hello sam52
I just wanted to say how much I appreciated your post to Dulcie. She is really in need of support and comfort at this time.It looks as though we have both given the same kind of advice. Like you, I feel all the problems are with the side effects from the chemotherapy. EC (epirubicin and cyclophosphomide) are very harsh on the body. I remember some people calling epirubicin the Red Devil! I am sure that if a person is stage 4 they will be told this.
I hope everyone reading this thread will offer some support and any information they have. I know that many on the threads get cancer fatigue and have to switch off from talking about it, but, if you have received support through your treatment, it is only right that you give something back to others who now need support from you.
I hope you will have a good weekend, sam52, but the weather does not look good. It has been pouring down with rain here all day.
Have you had time to read any good books lately?
Love
Sylvia0 -
Dulcie - the tonic I was thinking of is called Floradix Liquid Iron Formula. You can buy it at Holland & Barrett and also larger branches of Boots.
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Hello Sylvia
It is now almost midnight and I MUST go to bed....but I will reply to your post tomorrow!
With love,
Sam
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Thank you so much Sam and Sylvia...for your kind words...and i will go as soon as i can and get this liquid..
My OH who has not been feeling well since my diagnosis..then his mother's fall and death 7 weeks later ..and he was doing up to 5 hours a night vigil..
He was given antibiotics and steroids and ..more antibiotics...but he still coughed and has now lost 2 stone..we had a call off his doc today and his red blood cells have gone down further and she is bringing forward a CT scan..and a Colorectam..he is currently being treated for enlarged prostrate...cancer was mentioned today by the doc!
I am beside myself with worry about him..neither of our families have shown any interest in our health at all! Total disinterest! But at least we know where we stand...
I feel some comfort Sylvia knowing that i am not alone in having such a large tumour! You give me so much hope..even though i am Metaplastic!
Goodnight and thank you once again..both of you! xx
Dulcie xxxx
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Hello Dulcie
Thank you for your post. I do hope that the Floradix liquid formula with iron will help to restore some energy. It is a good product and one that I have used in the past. Remember to get iron in your food as well. Such things as prunes, dried figs and red kidney beans are good sources of iron. If I were you, I would also get a blood test to find out what your haemoglobin level is. I think it should be about 11. You should also know what your white blood cell counts are. Remember that chemotherapy drugs suppress the immune system and play havoc with your blood cells. You become very vulnerable to infection. That is why you are told to avoid crowds in general in shopping malls and supermarkets, on public transport etc. I did not go anywhere near my doctor's surgery during chemotherapy, as I thought it was a sure place to pick up germs and infections. Please let us know if you feel better after taking the Floradix.I was so sorry to learn that your OH has not been feeling well since your diagnosis. When we are diagnosed we go into shock and I think we tend to forget the effect that a cancer diagnosis has on other people in our lives and that they too go into shock. Our spouses are particularly vulnerable. They are afraid for us, afraid of losing us and worried about what the days and weeks ahead will bring for us and demand of us.
Too much is happening in your lives all at once and that will be taking a great toll mentally and physically on both of you. You will both somehow need to find the strength to support each other and take extra care of yourselves.
I was so sorry to hear about the death of your OH's mother and the fact that he was spending so many hours a night with her.
Reading through what you posted, it looks as though your OH developed a cough. I was wondering whether he had the cough before or whether it developed as a result of your diagnosis and his mother's death. I do think that coughs can be stress related, but I am not a doctor. It seems to be that when a patient goes to the doctor about a cough, they are given antibiotics and/or steroids. Often they seem to be given steroids via a spray, which does not seem to do any good. I have a cousin who is diabetic and has been complaining of a cough, on and off for many years. I have lost count of the number of antibiotics and steroid sprays that he has been through, but he is still coughing. He has also had quite a few x-rays but the chest has always been clear. This past week he has been back to the doctor about the cough and has been sent for blood tests and another x-ray. I suppose the next thing that I shall find out is that he is back on puffer sprays.
It is obviously a cause for concern that your OH has lost two stone in weight. Was he overweight? Has he not been eating due to the stress and anxiety over you and his mother? Has he had rapid weight loss?
Try not to worry. At least his doctor is taking action to find out what is going on. At least she is being proactive in bringing forward a CT scan and what I presume is a colorectal scan. You said that he was being treated for an enlarged prostate. Could this treatment be causing his other health problems? I know that an enlarged prostate is very common in men as they get older, but I have no idea how old your OH is. Are you a young couple, middle aged or older? I know that doctors usually do PSA tests on men as a guide to problems with the prostate. My own husband always asks for a PSA test when he goes for routine blood tests. I think that all is fine if the PSA (prostate specific antigen) is 5 or lower. There is a body of opinion that says that these PSA tests are not reliable. Even if your OH gets a diagnosis of prostate cancer, remember that it can be treated.
I can understand your worry about your OH, especially as you are going through a bad time with your own breast cancer.
It is sad that you are not getting any support in your time of need from your own families. Again, remember that your family members will also be frightened and anxious to know that you have been diagnosed with breast cancer. I am not trying to make excuses for them, and of course I do not know what kind of relationship you have with them, but I do know, from personal experience, that different relatives cope in different ways. I have two younger brothers, one of whom lives in Essex, quite a way from here, but he did support me through my treatment through phone calls and visits. The other brother, who lives within walking distance, would come to see me but he told me not to talk about my breast cancer. I found that difficult because I did want to talk about what was happening to me at various stages of my treatment, but I had to learn to talk about other things.
I do hope you have some good friends and neighbours to help you through this. With my own husband I used to make him take breaks from me by going out for walks, going to do a bit of shopping, or going to the local Hospicecare to attend meetings with others who were looking after loved ones with all different types of cancer. I was perfectly fine on my own and would have a lie down or just sit and be peaceful. I also took up the offer from my oncologist to have Hospicecare nurses come to me whenever I wanted, to talk and provide help. They came all through my treatment and I was glad of their company. I still see them in the town or supermarket from time to time. They are very useful people to have as they can deal with anything that you ask. I would strongly recommend them.
You should also be in regular touch with a breast care nurse, who should have been assigned to you on diagnosis. You can phone them about anything that is worrying you and if they are not around you can leave a message and they will always get back to you.
Remember to take advantage of any local support groups that you have. It is always good to talk, get advice and pick up tips. I was wondering whether you have anything on site at your hospital. Here in Devon, in Exeter, at the RD&E Hospital that I attend, we are very lucky to have a cancer charity known as FORCE. It was specially built some years ago and is a beautiful modern bungalow with a nice garden. You can go there and have a cup of tea, or take your lunch there. It is run by volunteers and paid staff. Members of the staff will come and talk to you and sort out problems. There is free counselling for patients and families, free aromatherapy, reflexology, etc. and all kind of special groups. You should find out if you have anything like this available where you are.
I was particularly interested in what you said about you OH. The husband of a friend of mine has just been diagnosed with prostate cancer and like you she is very afraid and anxious. Naturally she has been looking to me for some reassurance because she knows I have been on this cancer journey. Prostate cancer is as common in men as breast cancer is in women. Her husband has started treatment and is on anti-hormonal pills for a week and then an injection. This will be followed by another week of pills and then an injection. Presumably this is to try to shrink the tumour. He will then have radiotherapy or might be offered a trial that combines radiotherapy and chemotherapy.
There seems to be so much cancer around. We urgently need to find some kind of prevention. It does not seem to me to be normal to have so much cancer and at a younger and younger age.
You must look on the bright side in all of this. I am glad that my own status when diagnosed with a large tumour gives you comfort and hope. Remember post as much as you like. Do not bottle things up.
It would be interesting on this thread to hear from those who are dealing with there loved ones diagnosis of breast cancer, so that we breast cancer patients know that they are affected as well.
Wishing you and your OH all the very best. An elderly friend of mine always used to say, "this too shall pass".
Thinking of you.
Sylvia0 -
Hello Lint_Roller_Derby (Betty)
As promised in my post to you yesterday, I am posting the chart that I mentioned which shows what happens as a cancer patient goes through the various weeks of chemotherapy treatment. This chart was part of a chapter about cancer drugs and treatment that I found in one of my medical books. The chart was entitled "Successful Chemotherapy Treatment".
As you can see, the cancer cells almost disappear by the end of treatment and the words in this chapter say that whatever cells are left are not enough to cause symptoms.
I think we probably have radiotherapy to mop up any of these stray cells.
I hope you will find this interesting and that everyone reading the thread will also be interested in the chart. It just shows you that although chemotherapy is tough, and the drugs used have all kinds of nasty side effects, overall the treatment does work. It is the best we have at the moment.
I do hope you have a good weekend. It is not at all like summer here. Yesterday we had an inch and a half of rain in our area.
Best wishes
Sylvia
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Hello sam52
Thank you for your post. I imagine that you are feeling tired this morning since you were up until midnight last night. Thank you for posting the Floradix information for Dulcie and probably for others reading the thread. It is a good product. I sometimes take echinacea tinctus when I am low in energy and it seems to energise me. I do not take it long term and i do not think you should take it before any surgery, which is why I did not mention it to Dulcie.
I expect you are winding down at school this afternoon and looking forward to the weekend. I do hope it will not be too hectic for you. The weather does not look good but after all the rain yesterday, at least it is dry today but very cool.
Thinking of you always.
Love
Sylvia
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Hello everyone
Another week is drawing to a close and I hope it has been a positive one for you.
I hope everyone will have as good a weekend as they can, without too much stress or hassle. I hope all is well with Karen_Sheffield, Karen3, youngmommy, BuddhaWolf, Coxy1803 (Sharon) and also BernieEllen, who is making everyone laugh with her jokes.
Best wishes
Sylvia
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Hi Sylvia,
Wow, I have a lot to catch up on reading! Just stopping by to say a quick hi and now I am going to read what I have been missing out on! You always present such interesting information!
I hope all of you have been feeling well! I have been doing pretty good, walking, stationary bike, trying to make better food choices:)
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Hello bak94
What a nice surprise this morning to find your post and have you back on the thread. I have been wondering how you have been getting on and hoping that all was fine with you. I certainly missed you on this thread and told myself that you were probably taking a break from it all, after going through breast cancer for the second time after so many years free of the disease, and then having all the problems that you had going through it all a second time. I was so glad to know that you are doing pretty well and I am sure that I speak for those viewing the thread and in particular for the group that went through treatment with you.I speak, of course, of mccrimmon324 (Heather), christina1961, Maria_Malta and BernieEllen. I know that Heather has moved from Florida to Pennsylvania and has settled into a new job. I assume she is doing well with her health. As for christina1961 and Maria_Malta, they have not posted in a while. BernieEllen keeps in touch and appears to be doing well. Through all those months of treatment, with all the ups and downs, and all the support and encouragement I tried to give you, I became quite attached to you all.
I hope you will be able to catch up on all the posts and as you catch up I welcome any comments.
Thank you for your kind comments about the information that is posted on the thread. I do so want this thread to be of high quality and a real help and comfort. I always remember what one of my teachers at elementary school used to say to us, which was 'If a job is worth doing, it is worth doing well'. I was about eight when I had that teacher. I went back to see her as an adult and she presented me to her class with great pride.
You seem to be doing everything to help yourself. Good nutrition and exercise are things that we can do to help against this awful disease.
Wishing you all the very best and hoping you will keep in touch.
Best wishes
Sylvia0 -
Hello linali
I hope you are not feeling too bad this morning. I looked up the drug that you mentioned in one of your posts, which Lint_Roller_Derby (Betty) in her post said she thought was known as Lyrica. This is the brand name and the chemical or generic name is pregabalin. I did a bit of research and found that it is an antiepileptic and anticonvulsant. Apparently it works by slowing down impulse in the brain. It also affects chemicals in the brain that send pain signals across the nervous system. I suppose this is why it has been prescribed to you. It is also used for diabetic neuropathy and fibromyalgia. I know from sufferers of fibromyalgia that the pain from this is very bad.I discovered that there are many side effects from Lyrica, including mood changes and depression. I also found out that if you are taking this drug you should wear a medical alert tag.
I hope this information is of help to you.
Thinking of you.
Sylvia0 -
Sylvia,
Congratulations on 7 years! That is wonderful!
I have been busy with work and taking care of things that have gotten a year behind from treatment. I have halfway organized my garage. I'm struggling with chondritis again - all it seems to take is a bump to my ribs and it flares up. I just had an xray that was clear so that made me feel better about it. Last time I had it on the cancer side. It takes a few weeks to resolve. I think it must be an aftereffect from chemotherapy.
Dulcie, I am so sorry you are in having these problems. I wanted to let you know that during my chemo, I stayed with my sister so I had some help during the worst of it. My husband came to see me at one point and it scared him so much - he said I looked like I was dying (he hadn't seen me for a week and I had turned a ghastly pale color.) He was shaken for a few weeks following his visit.
I'm sure you are feeling bad from the chemo and when I felt so bad, I was also convinced the cancer was spreading throughout. I had some areas of squamous metaplasia in my tumor, too - but they didn't classify it as metaplastic. I had only a partial response to the neoadjuvant chemo - and I'm still here, one year, four months following diagnosis with no signs of recurrence at this time. I ended up doing additional chemo after surgery in a clinical trial because I had the partial response to the first chemo.
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Hi Sylvia,
Thanks for the research and it supports what the info in the literature re side effects, but they do not go as far as medi alert. They do say that if you feel your mood change or bad thoughts to go to doc immediately. I have asked the breast cancer nurse and my GP but could only tell me that it is the " in " drug for breast pain! My Gp just said that it is a fairly low dose and felt that the consultant was the one to discuss my treatment with. As a result I only started taking it yesterday. I do feel headachey and have that same horrible metallic taste that I had with my FEC chemo. The side effects are scary and it can impair your ability to drive. I have been busy getting ready for my sisters visit and so havent had too much time to think about things. One thing it did say is that it can make you sleepy and for me that may be a plus as I dont think that I have had a proper nights sleep since my treatment began nearly 2 years ago. Anyway I will try it for a week and judge then. I hate taking any more drugs that can harm your body!
We are hoping through the support centre to do a survey re pain after, in particular, treatment for breast cancer as it seems to be something that happens some time after treatments finished so therefore you are out of the loop of oncologists and surgeons.
I wish that I could be of more support to others on this thread as the information and support that you give is a lifeline for us especially as it can be difficult to access our medical teams who on the whole do not seem to be familiar with TNBC. For me information is key to regaining some kind of control that a cancer diagnosis strips you of.
As for my own experience of chemo, FEC.... after the first two my veins started to collapse and I did have really bad throats despite drinking iced water whilst getting chemo. Yes the fatigue does get to you but you get through and I did any important stuff whilst on the steroid high.....4 xmas cakes at 4.30 one morning. The other times I snuggled in bed and watched series 1 2 3 of Mad men. Loved all the fashion but those chauvinist men, they looked good but so glad that women have moved on.....OR have we. Who wouldn't fall for a Don Draper.
So Sylvia you will realise I hope how important all the info is to us but more important is the feeling that someone will listen and someone will help.
I have been looking at what I eat but honestly apart from an odd cupcake and my friday night glasses of wine I eat quite healthily and love fish and vegetables.
Its half time in the match 0 ..0 and it seems to be a good match.
The north of England has had some terrible rain and around where my two sisters live there have been lots of floods and burst river banks, I hope that where you are isn't as bad.
I must head off to the airport soon so healing peaceful thoughts to you all
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Hi Christina1961 ..thank you for your comforting words......i just want to get this surgery over and done with! But what you have said to me does help enormously...I also have Fibromyalgia etc too....but lucky for me i only get attacks now and again..
I have not heard of Chondritis before.. it sounds awfully painful!
I wish i could be told i didnt have Metaplastic and it was all a mistake!
I am posting rather late and i am so tired ...I cannot break this habit of going to bed so late..I am so worried about my OH ..he is getting worse..but at last he is going as an emergency on Tuesday..
Sylvia i think i mentioned i was just turned 65..i had my first chemo on my birthday and my OH is just 70...and we have a lot of living still to do..Or i hope we do...
Dulcie xxxx
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Hello christina1961
Thank you for your post and your kind words. I was so pleased to see you back on our thread.I know that your life is very busy, but I am so glad to know that you are doing well post treatment. I can understand that things got behind while you were going through treatment and that you want to catch up.
I did not know that you suffered from chondritis and I am not very familiar with it. It sounds as though it is something that is quite painful. I am glad to know that your x-ray was clear and I can understand that you feel better for knowing it is. Did you not have this condition before the chemotherapy treatment? It is terrible what this treatment does to the body.
Thank you for your kind and encouraging words to Dulcie who is having such a bad time at the moment. I am sure that she will feel much better after surgery when she will be rid of that tumour.
Keep well and keep in touch. Are you do any courses?
Best Wishes,
Sylvia.0 -
Hello linali
Thank you for your post.If I were you I would be very careful with that drug, especially when it is being referred to as the 'in' drug for breast pain. I wonder if that means any kind of breast pain. It looks as though there might be a bit of buck passing going on there with the GP. I think that doctors dish out drugs too easily. I would monitor yourself very carefully and not take any risks. You say one of the risks is being sleepy. That is fine if you take the drug on going to bed, but not if you have to function during the day and especially if you have to drive.
I do hope that all goes well for your sister's visit, as it will take your mind off things.
I was interested to know that you are going to do a survey regarding pain and breast cancer treatment.
You should never be afraid or reluctant to go back to your oncologist or breast cancer surgeon if you have ant concerns, once you have gone through the standard treatment. You should be having regular check ups with these two people every three months for the first two or three years anyway. You alternate between the two during the year. After that you continue with alternate check ups every six months. I am still having these regular check ups every six months, along with mammograms every two years. If I have any doubts or want information, I usually write to my oncologist or breast cancer surgeon, depending on what I want to know. In fact, I am always told at my check ups to get in touch between these check ups if I have any concerns. We have to remember that we are not cured and that there can be recurrence, metastases or a new primary at any time. That is the awfulness of this disease.
I find it unbelievable that any medical professional concerned with the treatment of breast cancer, cannot, today, be aware of triple negative breast cancer. They are obviously testing for receptors when they do biopsies, so they must know what the receptor status is of a tumour. These TNBCs usually seem to be invasive ductal carcinoma and can be hormonal in receptor status or not, or a mixture. When I was diagnosed, I was told that I was negative in receptors, but it was not actually referred to as TNBC.
I understand that you want control over what is happening to you and that you do not want to be blindly told what to do. It is your body and you must decide what you will have done to it. There is so much information now that in my opinion the days of doctors playing god are over. This forum is all about information, comfort, support and experience. We are not supposed to give advice, but we can say what we would do in situations in which people find themselves.
Thank you for posting about your experiences with chemo. It is such information that will help the newly diagnosed. Never think that you are not supporting those that need it. Every post has its value and helps those going through the cancer journey.
I had to laugh at the thought of you making those four Christmas cakes at 4:3o in the morning! I was interested to know about the highs you were experiencing whilst taking steroids. It is not something I remember happening to me, but I took steroids only for the first two or three days after chemo.
I am not familiar with Mad Men, but I am glad it helped to get you through treatment. I do hope that women have moved on and that they are not taken in by looks and fashionable clothes, but sometimes I do wonder whether women have moved on.
I am so glad to know that you find the thread useful. There is nothing more beneficial than being able to get help and comfort.
You seem to be eating very healthily and a few treats are beneficial. Life would probably get very boring without them.
It is raining cats and dogs as we say here in England. I have never known such a lot of rain and it seems to be throughout the UK.
Keep well and keep happy.
Warm thoughts
Sylvia0 -
Hello Dulcie,
Thank you for your post.
I do hope that everything will be fine with your OH.I have two friends here who have husbands with the same problem. As I said one has started treatment for cancer and the other has been through surgery for a non malignant problem of the prostate, which I understand is quite common.Waiting for a diagnosis is always the worst time because of the uncertainty.
You take care of yourself and try not to worry to much about the word metaplastic. Concentrate on getting over the surgery and getting rid of that tumour.
Have a good week and think about the positives in your days as the week progresses. Tell us your highs and lows.
Thinking of you,
Sylvia,
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Hello bak94,
I was glad to read that you have successfully finished your studies Congratulations! I think you are right to take a break and enjoy the summer.
I was glad to know that you are doing all you can to get ready for your hysterectomy that is coming soon.
I was interested to know that you could be going on a metformin trial. Let us know how you get on.Have a good week.
Best Wishes, Sylvia.
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Hello everyone
I thought you would like to know there was a snippet of information in a newspaper yesterday about breast cancer. It was stating the three main risk factors for developing breast cancer and they were gender, age and a strong family history. When it comes to age, they obviously mean that the older you get the more likely you are to develop any kind of cancer. Of course, being old does not seem to apply to TNBC which affects more younger people than older. If cancer is largely a disease of old age, there is an urgent need to know what is causing TNBC in younger women.
Even for a strong family history, we know that breast cancer caused by certain faulty genes still represents only a minority of women who develop breast cancer. A strong family history could be caused in my opinion by various things, such as generations eating a bad diet, being obese or overweight, being inactive etc.
Also in the media, was alcohol and the fact that it is a significant risk factor for the development of breast cancer.
Once again, there was mention of how being very active may help avoid development of breast cancer. It was pointed out that you do not have to go to the gym etc., but just to be active in your everyday life by doing household chores and walking.
I hope you are all having a good week.
Best wishes
Sylvia
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Hello Sylvia
Sorry I have not been on the site for so long. Since starting Chemotherapy one thing after another has cropped up and I haven't been in the right frame of mind to post anything. This will be a longish post I'm afraid. I will give as much information as possible for others to read, as it might be helpful in some way.The week I was due to start Chemo my oncologist told me it would be best to have a PIC Line or a Hickman Line inserted to avoid infections and lymphodaema in my arms. So on Tuesday 22nd May I went to have a Hickman Line inserted in my chest. I don't know whether you are familiar with these. A tube is inserted into your jugular vein towards your heart and the rest of the tube is run under your skin across your chest to an exit site where drugs can be administered or blood taken. Not a pleasant procedure but not as bad as it sounds either. There is a risk of infection and blood clots with these lines and, I must say, I felt very stressed when they were telling me about the possible side effects, it was just one more thing to take on board. So far it has been OK - touch wood! The District Nurse comes once a week to flush it out and inject Heparin into it to keep any blood in the line soft so there is no blockage.
The day after having the Hickman Line put in I started taking the Steroids, ready for the Chemo the next day. The Steroids (Dexamethasone) had to be taken as follows: 4 twice a day at 9am and 9pm (my oncologist advised me to take them earlier so that I could sleep). I had to take them in the same way for the next two days. I had the Chemo on the following day (Thursday). I had to do a couple of MRSA swabs in the nose and groin. I had a saline drip to start with and then some more steroids and anti-sickness drugs. I had cold caps put on to try to preserve my hair. They were renewed every half hour. The first one was the worst, but my head gradually became accustomed to them. The Cyslophosphamide was inserted from two syringes and took about 10 minutes. The Taxotere was fed in through a drip and took about an hour followed by some more saline. I was given anti-sickness tablets to take away as well as antibiotics to take for 10 days from day 5 of the cycle. I had already been given ant-acid tablets to take each day (Lansaprazole). One of the antibiotics was an anti-fungal medicine (to help prevent problems in the mouth etc). These were Levofloxacin and Fluconazole. The session itself went OK and I felt fine and walked home afterwards.
I felt fine until the following Monday. I suddenly felt really hot and nauseous and had to sit down quickly in front of a fan. I felt as though I was going to pass out but didn't. I phoned the hospital and they advised to me go to see them so they could assess me. My brain seemed all jumbled and I didn't feel confident about getting a taxi to the hospital in case I was sick or passed out. To cut a long story short I did end up going to the hospital in a taxi with my son and they took my blood pressure and a blood sample. I had to wait for a long time till the results came back. My blood seemed fine so they put it down to either dehydration or a water infection. They sent me away with 3 days of antibiotics (these were in addition to the ones I was given to take during the cycle). Another 4 days passed and I started to get a sore throat and pain in my wisdom tooth. My temperature went up to 38.3. I was admitted to the hospital at 11:30 on the Saturday night (day 10 of the cycle). The hospital advise you to phone them if your temperature goes above 37.5. I'm just glad they had a bed and didn't send me to another hospital. I ended up being in hospital until day 17 of the cycle. My white blood cell count had dropped to zero so I was neutropeanic. I was put on a drip throughout my stay and fed stronger antibiotics. They also arranged for me to have an xray on my tooth and they organised an appointment with the Dental hospital to have the underlying problem sorted out. I was discharged the following Saturday.
The following Wednesday I went to the Dental Hospital to have the wisdom tooth removed. I was told the other one had to be removed as well but I could go back the following week! The tooth extraction was an awful experience. I must have been in the chair about one and a half hours. It was difficult to get out because my jawbone was dense and there wasn't much movement around the tooth. The local anaesthetic wasn't working as well as it should because the area was still inflammed. Later that night I started feeling hot, briefly passed out and then started being sick. I ended up the A & E department of a hospital across the other side of the city. They thought the symptoms may have been caused by taking pain killers on an empty stomach. They eventually gave me an anti-sickness injection. I couldn't eat very well as the site was still throbbing but I managed to keep a sandwich down. They discharged me with 7 more days antibiotics.
Another week passed. My face was swollen and I felt the area was still inflammed. However the following Wednesday I was admitted into hospital to have the other tooth out under general anaesthetic. This experience was much better. The dental surgeon I had was really lovely (she had done the first tooth as well). It turned out she had been through chemotherapy herself for Lymphoma about 16 years ago, so she was very sympathetic. The anaesthetist was also good and took on board everything I told him about the anaesethetic and agreed to put me on a drip to come round etc. I am still recovering from this tooth extraction. My face was very swollen and bruised but has started to go down. Obviously it has been difficult to eat properly so I have lost about 6lbs.
I saw my Oncologist yesterday. My chemotherapy had already been put off by two weeks but I asked that it be delayed another week to allow my mouth time to heal. My throat still feels a bit sore and I have a kind of tight feeling in it that I can't explain, as though something is stuck in it, (I don't know whether it is caused by anxiety or not). He agreed to delay it. He wants me to have the next session on Thursday 5 July. He is going to give me a growth factor to inject into my stomach from day 5 for 5 days, in addition to the usual antibiotics etc. The growth factor stimulates your white blood cells and will, hopefully, stop them dropping so low next time. He thinks it will make my next cycle much easier. However, wouldn't you know, there are side effects such as aching joints, a flu-like feeling and possibly back pain.
The whole experience has frightened me and I have been thinking to myself I could stop this now and not have any more treatment. I also wonder if it is doing more harm than good. The Onc reminded me that TC Chemo is good for Triple Negatives. My Onc is very nice and genuinely wants to make the whole experience much better. I am going to give the next cycle a go and see what happens but I am doing it with much anxiety. There is no way I can go through another 5 cycles if they are like the last one - I would be a wreck. If the growth factor doesn't work he mentioned reducing the dose of Chemo.
I am seeing another doctor tomorrow about the results of my genetic test. It looks as though I have one of the genes because she asked asked me to go back and see her. She will recommend having my ovaries removed (that's another thing to look forward to)! My brother will also have to be tested because he has a daughter and it can be passed down through him. (By the way, the cold cap didn't work and I have already lost two thirds of my hair).
Sorry if this sounds quite negative and depressing. If anyone else out there is having a hard time on Chemo, at least they will know they are not alone! I will keep you updated about my next cycle. I hope to come back and tell you that it has been a much better experience!
Congratulations on your 7th year clear, it is something positive for the rest of us to hang onto. Thanks for setting up this forum and for all the time you invest in answering the postings. I am sure it is very much appreciated by everyone involved.
Bye for now.
Karen
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Hello Karen Sheffield,
Thank you so very much for your post. It is much appreciated, especially as you are having such an awful time with your chemo. You have written such an excellent post with so many valuable details that I am sure you will win the admiration of all.I thought you might be having a difficult time with chemotherapy when we did not hear from you. I could not imagine just how difficult it has been for you. I can understand why you have not felt in the right frame of mind for posting. It is so kind and thoughtful of you to have posted to help others. I sincerely hope that writing everything down has in some way helped you as well.
You mentioned about the PIC Line or the Hickman Line. I did know about this when diagnosed, but I was not offered it when I started my six months of chemotherapy, which I had before surgery. I had read about it and I would not have accepted it, because of the risks of infection, the cleaning of it out etc. That is my own personal opinion, but it would not have been for me. However, I must emphasise that these PIC and Hickman lines are very common and from reading some of the threads, the women like them and recommend them. The procedure does not sound very nice. I understand these are inserted because of potential problems with collapsing veins when treated via a cannula on the back of the hand. This is exactly what I had done. I would arrive for my treatment and the cannula would be inserted at each visit. On my last chemotherapy treatment the nurse did have trouble finding the vein, but she did succeed. I often had bruising form at the site of the cannula. I can understand how you felt when you were being told about the possible side effects of these lines. Infection and blood clots are serious side effects. I can understand how stressed you felt. With this breast cancer business, there is too much information to take in all at once, and the brain cannot cope.
I am glad to know that, so far, you have not had any problems with this line. Keep an eye on it. How do you feel about having the drug heparin injected into you once a week.
I am asking this because after I had gone through my six months of chemotherapy, with no problems in fact, I then had to have a mastectomy. It was then that my oncologist and breast cancer surgeon mentioned to me about having a Portacath installed inside me on my left side, while the mastectomy was performed on my right breast. I was told I should have this done because it was thought that the cancer might come back and that, if it did not, I could leave it inside me without any problems. Rather reluctantly I agreed to have it done. After my mastectomy I was then told that I would have to go to the chemotherapy ward every three months to have the port cleaned out and heparin flushed in. I was rather shocked and annoyed at this, because, had I known, I would not have had it installed. I was also told that it could stay in my body for the rest of my life without any problems!!
Consequently I went through radiotherapy without any problems. I went to the chemotherapy ward after three months and the port flushed out with heparin and cleaned. I thought so far so good. What I did not like was the psychological effect on me of returning to the chemotherapy ward and seeing patients going through their treatment. On my next visit no flushing would happen and I was told there was a problem! I had to go for an x-ray and was told the port had kinked and split and that I would have to have it removed under general anaesthetic. This is what I did. I was told it was rare for a port to fail like this. I said I did not want another one installed. They said that once it had failed you did not get offered another one. At the time I could have done without all that and the fact that they wanted to install it, just in case, made me feel quite gloomy about my survival.
The other thing that I have learned from your post is about the steroids that you had to take ready for the chemotherapy the next day. I do not know whether this is standard procedure now, but I did not take any steroids prior to my chemotherapy treatment. I am wondering whether, when you say four steroids twice a day you mean eight in all or four in all. It is not clear. Either way it seeks a lot. It would be useful if other women going through chemotherapy and are now taking steroids the day before chemotherapy would post and let us know. We have to remember, things change and I had my treatment seven years ago.
When I was having chemotherapy, the district nurse used to come to my home the day before treatment and take blood. This would then be sent to the hospital and the results would be waiting in the chemotherapy ward when I arrived for treatment. If the blood test showed problems you would not be allowed to proceed with your chemotherapy treatment. The chemotherapy drugs were only made up after this. Fortunately for me I never had any problems with my blood and I went forward with my three weekly treatments for six months.
The only steroids (Dexamethasone) I took were one or two a day for a couple of days following chemotherapy. It looks as though now they are giving out more medication.
At the time, they did not do MRSA swabs.
I did ask my oncologist about cold caps back in 2005, but she told me that she was against them because of the risk of infection. I did not push the point further because I had found out that it is quite a long performance, that the coldness is dreadful and that it can bring on awful migraines.
I was most interested to know about the chemotherapy drugs you had and how they were administered. I was interested to know that you had cyclophosphamide and docetaxel (Taxotere). I had cyclophosphamide with epirubicin for the first three months and then docetaxel on its own for the last three months. I had all three drugs through an intravenous drip. All of these drugs have side effects, but this does not necessarily mean you will have them all or to what degree you will have them. I was also given an electro cardiogram during my treatment to see what my heart was doing. Have you been given this? You should have one before and during treatment. I have read that cyclophosphamide causes hair loss and can affect the heart, lungs and liver. Apparently it can also cause bladder damage in susceptible people, because it produces a toxic substance called acrolein. There is a drug called mesna which apparently can be taken to avoid this. Docetaxel also has nasty side effects, one of which is discolouring of toenails and even the toenails falling out. I think it is good to be aware of side effects and to look for symptoms of these, but to remember all the time that you are taking these chemotherapy drugs to keep alive. I remember my hair started to fall out after the first treatment and that I wore a wig to my second treatment. I also remember my eyelashes and eyebrows disappearing during the docetaxel. It sounds awful but we all get through it.
The one thing that sticks in my mind about your treatment and current trends, if your treatment is now standard treatment is that much more medication is being given out.
I think you have to take it very easy straight after chemotherapy. They usually advise you to have someone with you. I do remember after my first treatment that after a few days I wanted to go into Exeter to have the fringe of my wig trimmed a bit at the shop where I had got it. I then felt hot and thirsty and went into Smiths with my husband to get a bottle of water. I stood near the exit while my husband had to queue for this. I started to feel really strange and tried to catch my husband's attention. The next thing I knew I was being looked at by my husband and a couple whom I did not know and was being offered water. My husband had seen me collapsing, grabbed me and managed to walk me to the lift. Apparently I collapsed on the floor of the lift and came to on the floor outside the lift, where a couple were offering me water. I think it is prudent to stay home for a week or so after treatment. We are told to avoid crowds to avoid picking up infection. Remember to drink and to drink water after treatment and all through treatment for fear of dehydration.
I was interested in what you said about a sore throat and a pain in your wisdom teeth. I know that during chemotherapy a sore throat has to be reported promptly to your doctor or medical team. You also have to take your temperature regularly during treatment and that anything abnormal cause for prompt action. All this could be an indication of low white blood cells and you end up as you did with neutropenia.
Before starting your chemotherapy treatment you should have been told to go for a dental check up and get any problems sorted out as you would not be able to have dental treatment during your chemotherapy. You should also have been told to have flu and pneumonia injections.
I was so sorry to hear that you ended up in the hospital with zero white blood cell count. This must have been awful for you on top of everything else. I have heard of so many women ending up in hospital with neutropenia. On top of that you had to have extractions of your wisdom teeth. I just do not know how you coped with this. I think you deserve a medal!
Thank goodness the other tooth was taken under general anaesthetic.
I do hope you will gradually pick up from this ordeal. You certainly need a rest, I would think, from all those antibiotics and other drugs. You need some good nourishing food and to build up your strength.
I was glad to know that your chemotherapy has been put off by two weeks and I just hope that time will be enough for you to gather your strength sufficiently for the next round. Do not be pushed into the next treatment if you do not feel sufficiently recovered. Remember this is your body and you decide what you do.
I know nothing about growth factors, that are injected into the stomach, to stimulate white blood cells. Is this the drug known as Neulasta? There have been lots of postings about it on various threads and it seems to affect patients differently. Some complain of bone pain but others feel fine.
I am sure you must feel terrified about all you have gone through and I can sympathise. I think if I had gone through all that it would have put me off continuing. If you can have time to get stronger and for your mouth to heal, perhaps you will feel differently. You probably need a strong probiotic supplement from Holland and Barrett after all those antibiotics. To help your mouth there are good products, such as Biotene.
Please let us know what happens about the results of your genetic test. Try not to think about having your ovaries removed and any other problems at the moment. Concentrate on getting through chemotherapy if you decide to continue. If you do continue and feel up to it, post so that we can all help you through.
Thank you for the kind words about the thread. It is words such as yours that make it all worth while. We have some wonderful women on this thread.
Warm thoughts are coming your way. We are all thinking of you.
Best wishes
Sylvia.0 -
Hello Karen_Sheffield again
Last night, after posting, I was thinking a lot about all that you have gone through and I do hope you will feel better soon.
I remember that you had said in a previous post that you had been diagnosed at age 41 with hormonal breast cancer and that you had been on Tamoxifen for five years. I was wondering what kind of treatment you had then. Am I right in thinking that you did not have chemotherapy at that time and that this is your first experience of it? Did you have radiotherapy then and what kind of surgery?
There is another English lady on the thread who is also having a tough time with chemotherapy, she is Dulcie and you will probably know what she has been going through if you have been catching up on the thread. Her chemotherapy was stopped after the second dose because she was so unwell. She is waiting for surgery (mastectomy) and then radiotherapy. Dulcie has metaplastic breast cancer.
There is also an American lady on the thread, bak94, who has been through a very tough time with her breast cancer treatment. Her cancer came back after about 8 years in the form of a new primary in her left breast and was TNBC with a bit of oestrogen+. Her first primary in her right breast was also TNBC and she had a lumpectomy. She has finished her standard treatment but is waiting for surgery (hysterectomy). She is BRCA1+. The last time she posted she said she was feeling quite well.
I am hoping these two ladies will post to support you and encourage you.
The rest of us on the thread need to give good support to you and Dulcie as you go through treatment.
Karen3 is also another UK lady who has had a tough time with breast cancer. She was first diagnosed with TNBC in 2009 in one breast and then had a new primary in 2011, TNBC, and has got through it all. Karen3, if you are viewing, we all wish you the very best.
Last but not least, sam52, also from the UK, diagnosed with hormonal breast cancer in 2001, also had a rough time during chemotherapy, ended up in hospital with neutropenia.
That is all for now.
Best wishes
Sylvia0
