Calling all triple negative breast cancer patients in the UK
Comments
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Hello bkj66
Thank you for your post. I think you will find the Anti-cancer, a new way of life book very interesting. I have read my way through a whole load of books to do with BC during the past six years, and have recently donated a lot of them to my local branch of Cancer Research UK. I have kept a few that I am still using. The Anti-cancer book was last updated in 2007. Incidentally on the cover of the book it states "All of us have cancer cells in our bodies, but not all of us will develop cancer". What I would like to know is why we have cancer cells in our bodies in the first place!!!If I were you I would try to stay off the sugar. It is very strange that, when we feel stressed, we have this need for sugar. It does give a burst of energy, but that quickly sinks. Perhaps in the Western world we became addicted to it as children, when sweets and chocolate were given as rewards. All our special occasions are associated with sugar - Christmas, Easter, Mothers' Day, birthdays, weddings etc. Here in the UK, in the supermarkets, we have confectionery wall to wall and in our face. I find that I am not that fond of sugar and that when I feel stressed I have 90% chocolate, which has very little sugar in it.
Congratulations on losing thirty pounds in weight. Having done that I am sure that you can lose more and you will definitely do it if you adopt the anti-cancer diet. Apparently, so I was told, green tea is very good for losing weight.
For the moment, just concentrate on getting through chemotherapy. I was interested to know that for your second lot of chemotherapy after AC you are having Abraxane and carboplatin.
Good luck.
Sylvia
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Hello debbyanzalone
I am so glad that you have found our thread, as it is so important to have support and to be in touch with people who have experienced or are experiencing what you are going through. I only discovered breastcancer.org long after my treatment had finished. Thank you for all your information. You must be glad that all the treatment is behind you.I am concerned that you do not appear to have had the usual three-monthly check-ups after treatment. When my treatment finished I had a CAT scan and a bone scan, and then three-monthly check-ups for about three years. These were just physical examinations and alternated between the oncologist and the breast cancer surgeon. After that I went to six-monthly check-ups and, even though I have now gone six years since diagnosis, I am still having six-monthly check-ups.
Since finishing treatment in July 2006 I have had mammograms every two years.
Even so, I find these check-ups rather basic and have asked about blood tests and scans, but have been told these are done only if you think there could be something wrong and you point it out to your medical team.
It looks as though in this country, under the NHS, there is a lot of rationing. If you have private insurance from work you might get scans etc.
I think we can all understand your fear, but, as time goes by, this will slowly diminish and you will learn to adapt to life as a breast cancer patient in remission but in the knowledge that with this disease there is always the possibility of recurrence or metastases. Just remember that whatever happens there is always treatment and that, in many ways, breast cancer is slowly becoming a chronic disease.
I think it was awful to admit you to a terminal ward when you needed treatment for low white blood cells. I do not think that patients with metastatic breast cancer or any other cancer should necessarily be classed as terminal. You can live for a long time with metastases. The difference between primary cancer and secondary is that they say they can cure the former but only treat the latter. This makes no sense to me if, having gone into remission with primary cancer, it can be lurking in your body and can come back.
I think it is awful that so many young women are being diagnosed with breast cancer, especially TNBC. What can be causing it?? Cancer used to be a disease of the elderly. I can understand your anxiety for your children and how they had to see you going through this disease. Remember, children are very resilient and face their own cancers with astonishing bravery. Keep looking forward and take one day at a time. We are all thinking of you. Make sure you get plenty of support from family and friends and any local support groups.
Sylvia.
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Hello chilimac
I was so glad to see that you had posted. Thank you for the update about your sisters. We are all so glad that they are doing well. Natalie must have been so relieved to finish her AC at the end of May and to have her surgery behind her. It was good to know that the pathology came back as a complete response. You can have a complete response with TNBC. We must all keep in mind that TNBC usually responds very well to chemotherapy and that Taxotere and Taxol are very successful chemotherapy drugs. Will she be having radiotherapy?All of us on this thread hope everything will be fine for Karin and that Natalie will stay well. As for you, Tonya, will you now get tested as you planned, since Natalie has finished chemotherapy? Look after yourself as all of this will have been a big strain for you.
Keep looking at the thread and keep posting.
Sylvia
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Hello everyone from a chilly, windy Exmouth!
I just wanted to finish the information I started about my own food routine. I have already given you details about breakfast. For lunch I usually have a sandwich made from whole meal/wheat bread, with wild red canned salmon, either Alaskan or Pacific. Since I do not touch butter or margarine I use organic hummus as a spread. Sometimes I have a good quality canned tuna instead. Occasionally I have North Atlantic cold water prawns in a sandwich. Whatever I eat I look to my nutritional needs. Having developed osteoporosis as a result of my breast cancer treatment and an over-active parathyroid gland (which I think may have caused the breast cancer or vice versa), I make sure that I have a calcium-rich diet.If I feel like a snack, I have some nutritious nuts, such as almonds, Brazils, walnuts, hazelnuts, cashews, pecans and pistachios. They are all full of important nutrients. I also have seeds mixed with plain pro-biotic soy yoghurt. I vary the seeds and have sesame seeds, linseeds, pumpkin and sunflower seeds. I also have lecithin granules.
For dinner/supper, I emphasise lots of different vegetables throughout the week, with a variation of white or oily fish, but not farmed fish. I also have a variety of canned beans and pulses.
Meat and dairy products play no role in my diet. I know that dairy is big business but apparently humans cannot absorb the calcium from cows, so I do not believe in a diet rich in these products for osteoporosis. I think if you are going to eat meat or dairy products it needs to be organic. I also think that animal products should be minimal if at all in our diet. The western diet consists of huge amounts of animal products and vegetables are often little more than a garnish. I think this kind of diet is out of balance. These are only my opinions and I welcome all comments.
That is about all for now. Have a good weekend. Try to forget about TNBC and enjoy your days with family and friends.
Sylvia.
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Dear Sylvia
i did have a checkup shortly after my mascetomy as paranoia sets in and i found a lump in the other breast so i rang the clinic and went up to see the consultant, gladly it only seemed to be harmless and they did mamogram it so maybe thats why they dont do the mamogram on this yearly, i didnt mention the hysterectomy i am having in 8 weeks time as they say i have an ovarian cyst which is 3cm, they have monitored it for 8 weeks now and also i have a fibroid the size of a football, i was sent up to the gynie and he has recommended that i have the full hysterectomy because of the link between BC and ovarian cancer, i only have the one ovary (i seem to suffer with cysts) i lost it when i was 18 and i am just starting my change, they gave me a blood test to establish this and also my iron was depleted so i guess this makes sense but to me its another operation and recovery, im sick of it just when you think you are having a life something else happens and what is your opinion on having HRT after having TBC, anyway sometimes i seem to moan alot i should feel grateful for still being here and another thing, dont know if you had a full mascetomy, my scar feels like ribs and bone, as to why cancer, i think high cholestorol is definately a factor, ive had high all my life, they say lack of vit d, its funny no one in my family has ever had cancer so its not the genesxxxxxxxxxxxx
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Dear Josphine
Im sorry to hear you have mets, as i said to syliva i should be grateful for just being here, i did have a mamogram and checkup not long after my mascetomy as i discovered a lump in the other breast which turned out to be nothing, ive had all my treatment at Essex County Hospital in Colchester, Essex, It seems to be different everywhere, i was under an oncologist who i dreaded seeing really, he was matter of fact, i remember when i came out in a terrible rash all over my body, they took me in to hospital and said that it could be Menningitis, i had a rought night waiting to see and in the morning when he came to see me he asked what i was doing there,no bed side manner or was i just a number! anyway the rash was not from the chemo but from the antibiotics which they eventually gave me every month after the chemo as i was always white blood non existent. anyway my hair has grown back curly is this normal - also i have lympadema in my hand, its not to much of a problem but i have tried to wear an arm sleeve but its my hand worse even with the hand bit in it! i just take no notice of it and open up my lymph nodes , anyway thanks for your kind wordsxxxxxxxxxx
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Hi Sylvia et al
Sylvia - thanks so much for taking the time on the other thread to wish me well on "graduating" from 3 monthly to 6 monthly oncology appointments. What is protocol in the UK? I am at the 2 year point from diagnosis and that is why my schedule has been changed.
On another note, my family and I are travelling to England next week to celebrate my Mum's 80th birthday. We have rented a big house in the Yorkshire dales and are having a weekend house party for 25 of us, ranging in age from 4-80.
I see eating on chemo has been a recent topic. Everything tasted like cardboard to me. I found it hard to eat when nothing tasted good, even though I knew it was important to eat. I do remember having soup almost every day!
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Hi to everyone, been reading all the diet advice - dad was a diabetic so going to start following his diet regime. Had chemo 4 thursday. So much easier with the line. Side effects kicking in, seem to be different this time. Can't eat - everything smells revolting. See how today goes. Hopefully some good new on hubbies work. Going back to work in the oilfields, in Algeria. Downside four weeks on and four weeks off. Previously did it for ten years, so i'm quite used to it. His mum will come over for my next chemo and then he would be back for my last. In a way it would be so good for him to be back in a military environment - it's where he grew up and where he does best.
Thinking of you all, have a great weekend
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Hi Debbie,
I am fine, really, I have an ability to detach myself from my condition, but sometimes (when it catches up on me) I get a real shock when I remember I have metastatic TNBC. I am off chemo (a holiday) for a while and when we come back from our holiday in the States I guess we will make a plan of the next stage. The gamma knife treatment is amazing as it precisely zaps the tumour in the brain (uses up to one hundred single radiation beams) which on their own are harmeless but all join together at the met. I really do not know what I would have done if I did not have private health insurance as gamma knife is not easy (but not impossible) to get on the NHS. I joined my husbands scheme just the year before I was diagnosed. previous to this I did not want to support a two tier system. Now I tell all my younger collegues to get on with this a.s.a.p Are you still on chemo, I note you said that you had very low WBCs, did they not consider giving you a neulasta injection to boost your neutrophils? I had Neulasta all the way through my treatment
All for now
J
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Hello jenn-uk
Thank you for your post.It is just two weeks since you were diagnosed, so you are probably still in shock. Give yourself some quiet time and at least a few more days to think about everything and to let your diagnosis sink in. Remember, too, that you are in charge. It is your body and it is your life and you must be in control.
It looks as though your medical team has decided to propose neo-adjuvant chemotherapy for you. This is chemotherapy before surgery, in an attempt to shrink the tumour. Your tumour is quite small and I know that sometimes chemotherapy can reduce it to nothing. The first lot of chemotherapy proposed is similar to what I had, except that I had EC and then docetaxel but I had four of each. My tumour was large 7cms but it shrank enough for a mastectomy to be performed. I had the chemotherapy every three weeks but since then there seems to be a pattern of doing it every two weeks but at a lower dose. I have read that more frequent, but lower dose chemotherapy is just as effective and has fewer side effects.
When you say about Avastin, and mention the other possible chemotherapy regime, does that represent the trial and that you know you will definitely be getting the Avastin? Avastin is the brand name for bevacizumab. This drug is what is known as a monoclonal antibody that interferes with the growth of new blood vessels (angiogenesis) by inhibiting the action of VEGF (vascular endothelial growth factor). I think this means it is a targeted therapy. I also think that this drug is licensed for metastatic breast cancer, but appears to be in use for primary breast cancer. I have read that trials with Avastin for metastatic breast cancer had very encouraging results. I know that women in the US on Avastin were not happy about the FDA pulling it for treatment of breast cancer. That was supposed to happen at the end of June. I thought that the FDA had changed its mind. Avastin was originally used for colon cancer.
Would anyone taking Avastin for primary TNBC please post and let us know your experiences.
Jenn, you need to have a proper two way conversation with your oncologist and find out the side effects. In the medical dictionary it says hypertension, bowel perforation and bleeding.
You must try not to worry about a diagnosis of TNBC and try to switch off all the doom and gloom that we hear. Any breast cancer diagnosis will cause worry, but we have to focus on all the women that are surviving it. A diagnosis of hormonal cancer is not all positive, because not everyone responds to drugs such as Tamoxifen, which is given after orthodox treatment. Tamoxifen is not without nasty side effects. We have to think and sympathise with those who are HER2+ and have to be treated with Herceptin. I am sure that women with triple positive breast cancer have the same anxieties as those women with triple negative. Just keep looking forward and deal with one thing at a time. Your challenge at the moment is to decide what chemotherapy you wish to have and get through that. Remember that chemotherapy is the longest part, and many would say the most difficult part, of your breast cancer treatment. Forget about recurrence for the moment.
On this thread you can rely on us to help you all we can. Remember, many of us have been there and we know everything that will be whirling around in your head.
Keep smiling.
Sylvia.0 -
Hello debbyanzalone
Thank you for your post.As I said to jenn-uk, please remember that you are in charge of what you want to do. Your medical team can advise but you make the decisions. You are having to deal with such a lot at the moment, so try to have some quiet time and think about things. Deal with one thing at a time and put the rest out of your mind if you can.
You have got through your chemotherapy treatment and you have got through your mastectomy. Did you have radiotherapy to complete the three parts of what is the usual conventional treatment? About seven weeks after my mastectomy, I had three weeks of radiotherapy with boosters.
At the moment, you have to focus on your hysterectomy operation, because I understand from friends that it takes a long time to recover from this. How do you feel about having a hysterectomy? I do not know much about this. Is it usual to have a hysterectomy for cysts and fibroids? I had large fibroids diagnosed when I was about 35, but I did not do anything about them, because they were not troubling me. I can only say what I would do in your situation, and I think I would get a second opinion. There is a lot in the media about unnecessary hysterectomies. However, I do understand the worry about breast cancer and the possible development of ovarian cancer. I know that this is especially so if you have or have had breast cancer that was BRCA1 or BRCA2 positive. Have you had any testing for this?
I do understand that, after going through treatment for breast cancer, you must be fed up with hospitals and illness. I know that, even now, six years after diagnosis, my stomach churns over when I have to go for check ups, or even going past the turn off to the hospital.
You asked about HRT. Again, it is only my opinion, but I would steer clear of it. There has been too much connection with HRT and breast cancer. A friend of mine, now eleven years clear of hormonal breast cancer, is certain her cancer was due to taking HRT and for taking it for too long. This is what I mean about making your own decisions. Your life belongs to you and to no one else.
On this thread you can moan as much as you like. We all understand.
In answer to your question about a full mastectomy, yes I did have one. I had seven lymph nodes removed, but only the first one, known as the sentinel node, was affected. I understand how you feel about the area where your breast used to be. It is a strange feeling of bone and ribs, but we have to live with it. At least we can see if anything is going wrong, such as a rash appearing.
I do not think we can say for sure that there is one thing causing cancer. I think there are many factors, but, above all, I think it is just chance. I remember my consultant telling me on my first appointment that I should not have breast cancer, because I was fit and healthy. It did not alter the fact that I had it.
Take life one day at a time and be happy with your two children and your husband. Remember, all this will not be easy for your husband, and he might also need some support. Join support groups locally if you can and do not be frightened about getting help from specialist nurses etc.
Keep smiling.
Sylvia.0 -
Hi Jenn
One of the smart reasons they give neo adjuvant chem for TNBC is to ascertain whether there is a response to the chemo, several TNBC can become resistant (or already are resistant). I have lung mets, so the combination of taxol with avastin was highly recommended. It is particulalry good in mets in the lung which are highly vascularised. There is much debate whether it is useful in primary BC, but I think that TNBC is a separate case. The good news is that I no side effects from avastin, and am still on it (although on a chemo holiday). Get lots of information and as Sylvia said, take time to think things over and talk through with your oncologist. I had dd AC/T x 8 after lumpectomy. Although I had clear margins, a small tumour 2cm? and no node involvement (0/11) I had recurrence by 12 -18 months. I always wonder what my response to neo adjuvant AC/T would have been. Interestingly I have had a good response to taxol this time around, but will not have the anthracyclins again because they are so toxic (and probably did nought). Keep calm and keep in touch
J
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Hello debbyanzalone
I was just reading your post to Josephine. She is very wise and brave and will give you good advice.I was interested to know that you had all your treatment at Essex County Hospital in Colchester, as my husband and I lived in Essex from November 1993 to January 2002, after spending seventeen years in Canada. We have been in Devon since then.
I was very concerned about what you said about your oncologist. He does not sound very nice at all and it could not have been good for you if you dreaded going to see him. Are you still with him for your check ups? I would not have put up with him and would have asked to be seen by someone else. I feel that, for breast cancer, it is better for women to be seen by women. I have been lucky to have an all-women team and ones who always seemed prepared to go that extra mile. You have been through a very tough time. Do not let anyone bully or intimidate you.
I think that probably all hair grows back very differently. I had a natural wave in mine before chemotherapy, and for a few months after it started growing back it was very curly and wild. Now it is straighter than it was originally. My eyebrows and eyelashes, which vanished when I was on Taxotere, have grown back but not really properly. If anyone knows how to get eyebrows and eyelashes normal I would be most interested to know. As for the lymphodema, it may normalise. I had a little bit of swelling in the first months, refused offers of a sleeve and everything became alright. I did stretching exercises of the arm to help and also got some physiotherapy.
With the NHS you have to be firm and assertive and learn to ask for what you want. If not, it is not necessarily offered.
Hello gillyone
Thank you for your post. It is about the same schedule here. After two or three years you go from three months to six months. After five years I think they like to discharge you. Perhaps for TNBC they may keep you on longer. I have gone past six years now. I saw my oncologist in May and she said she was quite happy to see me in April/May 2012. I already have my appointment. I shall see my breast cancer consultant in October 2011.
I was interested to know that you are coming to England to celebrate your mum's 80th birthday. I hope you all have a really good time. The Yorkshire Dales is a beautiful part of the country. Do you originally come from Yorkshire?
Thank you for your comments about chemotherapy and eating. My husband and I also had a lot of soup when I was going through chemotherapy.
Best wishes
Sylvia.0 -
Hello BernieEllen
Thank you for your post.You will not go far wrong if you follow an anti-diabetic diet.
I was glad to know that the line is working well for you. I was also glad to know that chemotherapy 4 is now behind you. You are now going through the worst days, so take it easy. We all seem to be affected by a mixture of taste and smells.
I was so glad to hear the good news about your husband and I hope that all will go well for him in Algeria. It will be difficult for you going through your treatment without your husband, but at least you will have your mother-in-law. Time will probably go quickly, as I found that the time between one treatment and another came very quickly.
Keep looking forward.
Sylvia.0 -
Hello josephine_ and everyone on the thread or looking.
I just wanted to say to Josephine from all of us that we are always thinking of you. I do hope you have a lovely holiday in the US and that you will be able to switch off metastatic TNBC. I know that when I was first diagnosed all I had going through my mind was I have breast cancer. I was not thinking about TNBC, because it was not named as such at the time. I was just told the prognosis was poor, because Tamoxifen would be no good for me.
You are very lucky to have private insurance because treatment is not rationed in the way that it is on the NHS. The gamma knife treatment would probably be difficult to obtain on the NHS and you might have to fight for it when you are weary from your breast cancer and may not feel up to fighting. Remember the struggles women went through to get Herceptin not so long ago.
I had the same feelings about a two-tier health system, but I would not blame anyone for getting private health care if they can. We have only one life. I think the NHS is in a difficult position because of financial circumstances and the great demand made on it. In many ways, cancer is a political football and drug companies are making billions for their life-saving drugs. I do not the power of the PCTs and think they should be abolished.
Are any of you getting the Neulasta injections with your treatment when your white blood cells are low? Since we have a postcode lottery in this country when it comes to cancer treatment, it would be useful to know how the treatment varies between counties.
Have a good weekend, everybody.
Sylvia.0 -
Hi All,
My wife is triple negative breast metastatic case. She had 8 cycles on AC & Taxol, 3 cycles on Ixempra +Xeloda + Zometa and 1 cycle of Abastic + Gemcitabine + Carboplatin. Pl. send suggestions , feedback
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Hello veejark
Thank you for your post. I would like to give you a very warm welcome to our thread on behalf of all the good and sensitive women that are posting. You are the first husband to post on our thread in support of his wife. I can imagine that you must be very anxious about your wife, as I know that my own husband, who was my strength throughout my treatment, went through deep anxiety and fear about me.I saw on another thread that you had posted more details of your wife's TNBC, so I know that last year she went through treatment for primary TNBC and that later it spread to the bone and liver.
The drugs that you mentioned, Ixempra (ixabepilone), Zometa (zolendronic acid) Gemzar (gemcitabine), Avastin (bevacizumab) and carboplatin (belongs to the group of platins) have all been used and/or mentioned by women on this thread. They are supposed to be very helpful for metastatic breast cancer.
How is your wife responding to these drugs? I hope that they are working for her. How is she coping with all of these drugs? How is she feeling?
I hope that I have been of some help. Please tell your wife that we all wish her well. Look after yourself, as being a carer to a person with breast cancer can take a great toll on a person. Get all the support that you can.
To all of you on the thread, especially those of you with metastatic breast cancer, please post and support veejark.
Best wishes
Sylvia0 -
hi there jenn
im to this site as well, i am a year clear this month, its funny i remember being exactly where you are now, i was scared of the unknown and especially the chemo, i had 3 fec to start off with and wasnt to bad on it, once you get the first one out of the way youll know what to expect which is half the battle. the good thing with breast cancer treatments is that they are coming up with knew things all the time and now im a year on i am assured that they keep a good eye on you, after all your treatment is over you will be very aware of symptons ect, i found with chemo treatment it was vital to eat the right things if you feel up to it, like fresh fruit and lots of veg, yoghurts and if you can stomach it beetroot juice is fantastic for the blood, it gives your body a much needed boost and gives you strenth, one thing i did religiously was to use the mouth wash they give you on the unit, i used it about three times a day and never had mouth sores- hope this helps abit, I thought id never get through this but i did and it has made me a stronger person, get lots of rest meso soup is brilliant if you have lost your appetite, good luck, debby
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hi there sylvia
thanks for your information, no i did not have any boosters should i had? I am due to see the surgeon who did the operation when i go back on 20th July not the oncologist i was discharged from him, we do not have any women oncologists at that hospital, or i dont think, i was never tested for the BRC, not really sure what it means, is it genes? as i said none of my family have had BC, they never told me i was TN until at the end of treatment i got a report to say how big it was when they took it out and hormone neg etc and when i got home i googled it. When i look back i didnt know alot about any cancer so most of it i googled.. As for the hysterectomy, he just said it would be for the best in the long run because of the link between ovarian and breast, also for the fact that i am still having heavy periods, maybe i will wait for the report to go back to the doctor and go up and see her, i get on really well with her, we are off to Chudleigh in Devon on the 23rd July for a holiday.xxxxdebby
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hi Josphine
im glad you are on a holiday, my brother live in LA and comes over three times a year as my mum is 80 , its funny as my mum was going to move up near me until i got sick and then she changed her mind because she thought she may outlive me! but i understand her insecurity. Its great to know that you have private insurance what luck just before you were diagonised, im sure you will get the best treatment. Im finished with all treatments, i finished my chemo feb of last year, i had the mascetomy April 3rd last year, it was abit of a wait as i kept getting chest infections that really worried me knowing that the spread for TNBC was lungs and brain, i made them do an xray on my chest and it was ok, i still get chest infections, have one at the moment and if it wasnt for the fact that my husband has a cough as well i would worry that they missed something, its always a worry eh, you said you found blood in your mucus had you any other signs, or had you been fit and well for the yearxxxdebby
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debby
Please be alert but do not overact............... A positive response for treatment iniatially should enable people to get on with their daily routine; but remain to be alert.
This is difficult as all my physical assesments over 3-4 months were fine and X rays similarly. My onc responded in getting a CT scan within hours of me emailing him regards bloody mucous; and retropectively my lung never sounded bad (all those wasted years of not smoking; or entirely because my lungs were in such good niche could take a tumour or twenty!! Who knows..............as I said previously I do not feel like a stage 4 TNBC; rather ( sorry to everyone on this thread) is that some (but not all ) will potentially end as stage 4 TNBC. That is why we need to focus about what treatment next. I used to feel different, but now think that if you have treated TNBC you should havea clear plan A,B and C . I do not mean the fretting what if? but quite simply have you thought of what next? TNBC moves very quickly
bw
J
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Thanks Sylvie, side effects totally different this time. No mania, tired and a bit emotional but that could just be with everything changing in my life. Taste not good this time, early than before. Just want to eat cheese.
Take care everyone
Bernie
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Hello jenn-uk
Thank you for your post. I was glad to see that you have not lost your sense of humour in all of this.
You will take chemo in your stride once it begins, so hang in there. I was surprised that you have not met your oncologist as I had quite a long interview with mine before I started chemo. She explained about the drugs and the side effects and was very kind and sympathetic. After the treatment I have always seen her for my check-ups. She alternates with my breast cancer surgeon, also a woman.
Please let us know how you get on with your first chemo treatment.
Best wishes
Sylvia
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Just briefly checking in to say that am basically back to normal and SEs seem to have passed. Food starting to taste as it should so I'm trying to eat as healthily as I can along the prinicples outlined by various people above..Hope everyone who is having chemo at this time is coping reasonably well...
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Hello Christina1961
I just wanted to say that I hope everything goes well for your surgery. Do you know how long you will be in hospital? In the UK it is about five days and really depends on when all the drains have been taken out. You must be relieved to have chemo behind you. Let us all know how you get on.Hello Suze35
I was sorry to read that you have not been feeling well and I hope you will soon be better. All of us here are thinking of you and hoping everything will go well with your new treatment that you started yesterday.
Hello bkj66
I just wanted to say that I hope all goes well with your chemotherapy treatment. I was sorry to read that you are terribly fatigued. All you can do is get plenty of rest and take it easy. Listen to your body and do what it tells you. I was very interested in what you said about hypothyroidism as a result of chemotherapy and radiation. When I was diagnosed with breast cancer it was also discovered that I had an over-active parathyroid, for which I had surgery after finishing my BC treatment. A couple of months ago I went for a routine blood test and was told that I was borderline for hypothyroidism. I have declined thyroxine and am dealing with through diet. A second blood test has now revealed that it is now normal. This chemotherapy really messes with our body, but it keeps us alive. Please let us know how you get on.
Hello jenn-uk
I forgot to ask whether you had obtained a nice wig. You can get one free on the NHS, but it does not have to be an NHS wig. I obtained mine at House of Fraser in their wig department. It was a Raquel Welch one and I really liked it.
Hello Maria_Malta
I just wanted to say that I was glad to know you are now feeling alright after your chemotherapy session. Keep up the good work with the healthy eating.
Best wishes to everyone.
Sylvia.0 -
Hello Everyone
Since we have been discussing chemotherapy treatment, with the emphasis on the different drugs, I thought I would post a list of general side effects for quick reference. They are as follows. Just remember this is a general list and that the drugs can affect us all differently.Bone marrow suppression.
Most chemotherapy drugs reduce the production of blood cells in the bone marrow. If these blood cells are reduced you will have a lowered resistance to infection (white blood cells), anaemia (deficiency of red blood cells), bruising/bleeding (sign of a low platelet count) including nosebleeds and unexplained bleeding.Nausea and vomiting
There is anti-nausea medication for this.Sore mouth and mouth ulcers
Take great care with oral hygiene. Use Biotene toothpaste and Biotene mouthwash for a dry mouth. These things are common after anthracyclines (epirubicin and doxorubicin).Hair loss
This happens with the anthracyclines and taxanes (paclitaxel and docetaxel). You can ask about a cold cap to prevent hair loss. Hair loss usually starts two to three weeks after the first chemotherapy.
Eyebrows and eyelashes and body hair can also disappear.Premature menopause
Fatigue
All chemotherapy causes women to be tired and fatigued. You have to take it easy.Diarrhoea
This can be controlled by medication.Thrombosis and pulmonary embolus
Women on chemotherapy are at a slightly increased risk of complications. Any leg swelling or breathlessness should be reported to your doctor.Problems with veins
Injecting chemotherapy into a vein damages it. The vein may become sore and hardened and the blood stops flowing in the vein. This usually settles down after a few weeks.Cystitis
Drink plenty of fluids.Damage to nerves
The taxanes can cause damage to nerves of the hands and feet and this can cause pain, tingling or numbness. Let your doctor know if you experience these symptoms.Redness of the hands and feet
5-fluorouracil given through IV or oral capecitabine (Xelda) can cause the palms of the hands and the soles of the feet to become red and sore.
I experienced redness of the hands and feet on docetaxel and facial blushing on cyclophosphamide and epirubicin.Skin and nail changes
You may get dry skin on feet and hands. You may get discoloured nails and sometimes the nails may fall off.Dizziness/hot flush
This can happen with cyclophosphamide.Temporary taste changes
This can happen throughout treatment. You can also lose your sense of taste.Red urine
Epirubicin is red and your urine may be red for a day after chemotherapy.Damage to your heart
Epirubicin and more so doxorubicin can cause heart damage. Doses are carefully calculated and there is close monitoring, so this is unlikely.I had ECGs before and after chemotherapy.
This is just a basic outline of possible side effects. Please post if you can add information about any of these or if you want to discuss any of the side effects mentioned in more detail.
That is all for today.
Sylvia0 -
Sylvia,
Thank you for your well wishes! I am working today, frantically trying to complete all my work before tomorrow's surgery. I will not be staying at the hospital overnight - which is very surprising, but the mastectomy is outpatient surgery! I'll try to update following my surgery.
Suze, I hope you start feeling better soon.
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Hello christina1961
Please let us know how your surgery goes. I was amazed that you will not be staying in the hospital overnight, but I suppose it is a good thing in one way, especially for those who are afraid of hospital stays. In the UK I know that women may have lumpectomies as day surgery, but I do not know whether it is the same for mastectomies. Things may have moved on since I had my mastectomy in 2006, when I had to stay in for five days. It was the worst time for me, as I hate being away from home. I was fine with chemo and radiotherapy, because I knew I would not be staying at the hospital overnight.
Although we have been talking mainly about chemotherapy recently, we are all aware that many among you will be going through surgery and radiotherapy. Please post and let us know how you are coping.
Thinking of you all
Sylvia
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Hello! Sylvia, I am actually staying two nights. There was a mixup. I am concerned because the tumor was still 2 cm (but could be scar tissue) and 3 nodes looked suspicious. Pathology Monday.
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Hello christina1961
I was glad to see your posting. Staying two nights in the hospital is probably prudent. My BC surgeon told me that, in general, she likes to keep people in at least overnight, just in case anything goes wrong after surgery.
Try not to worry about anything. Just relax and recover from the surgery.Wait for the pathology report, have a good study of it and let us know so that we can help you if we can. The more information posted on this thread, the better for all of us. Not everyone's tumour shrinks with chemo, but the important thing is that it has been removed. I am assuming that the suspicious nodes have been removed.
We are all thinking of you.
Best wishes
Sylvia
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