Calling all triple negative breast cancer patients in the UK
Comments
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Hello Susan
I am just popping in to say that I hope all will go well today October 10th as you start radiotherapy. Let us know how you get on.
Hello Michael
Hope you had an enjoyable time in Bruges and if you are now back home I hope you found all was well and I hope we shall hear from you soon.
Hello Sam_UK
I hope all is well with you as you wait for your surgery on October 16th. I hope you are keeping in good spirits.
Hello Jackpot and apandy (Anne)
I am thinking of you as Jackpot you wait for your third chemotherapy on October 16th, and Anne as you start your first chemotherapy on that date.
Hello MartOne
I hope all is well with your mother and that radiotherapy is progressing.
Hello peterandliz
I hope Liz is recovering well from her surgery. How are your friends getting on with their cancer treatments?
Hello to InspiredbyDolce (Debra) and adagio over there in North America
I would love to hear from you, especially if you have any information for the thread.
Hello Carolben
How are you? Are you back in South Africa? How did your trip to Israel go? Most important of all, how are you?
Sending my best wishes to everybody.
Sylvia.0 -
Hi Sylvia,
I have been reading but have not posted for a while.
I have been busy with one thing or another and although I have been to a cancer conference nothing new to report unfortunately. Prof John Crown presented one of the breakout sessions on breast cancer and did mention TNBC in the context that women diagnosed with it come to his clinic very frightened for the future but that shouldn't be the case. He has set up a new research network in Ireland and TNBC is the main focus of one of his researchers. Unfortunately the presentations and info were not available to bring away from the conference.
I also went to the breakout session on the long term after effects of cancer treatment by Patricia Ganz. It was very interesting and she has proven that there is a biological reason for fatigue and cognitive changes to the brain. For me and other women at the conference it was an AT LAST moment, someone acknowledges that they do exist and can do for some years after.
I am starting on a programme with my counsellor to try and manage it. It is mainly CBT which has not been too successful for me in the past but we will adapt it so that it will be relevant to my needs.
Damian has been waiting to go for further tests and our days seem to focus around hospital and GP appointments. We hope to go to London for a few days in November and Leigh will come too.
Leigh and I are going to see Cinderella the ballet on Friday and it looks like a wonderful production.I think that it is the Russian State ballet but not certain..... which reminds me ...I had better search for the tickets.
The centre is getting busier and busier and everyone is knitting or crafting or making jewellery for a fund raising Xmas fair on the 30th November. We are also waiting for our Xmas cards to be printed. Some of us have painted winter scenes of Clare and they will be used for the cards. I was lucky to be included as mine looks like the work of a primary school child.
On Saturday we have the head of breast cancer research coming to the centre for one of the question and answer sessions. He was brought up locally and I'm sure that Mary will expect him to be very receptive to all our questions. I have learnt though not to expect too much as regards any new stuff connected to TNBC as they are always hesitant to reveal information until it is proven. I shall do my best to establish some kind of contact with the researchers into TNBC.
Last week we got the news that Damian's older sister has been diagnosed with cancer of the uterus and cervix. She had surgery last Friday in the London Bridge Clinic and is to have some new form of radiotherapy but no chemo for the moment. It makes me so concerned for Kerry and Leigh as it is the fourth member of Damian's family to be diagnosed.
Sorry that I am not more supportive of all the wonderful women going through treatment but I do use info gleaned from this thread to pass on to newly diagnosed people at the centre.
I have no Tai Chi today and this bright cold weather is showing up all the marks on the windows...I may have a go with my left arm and my new window cleaning pole.
I am up early because I had things on my mind in particular the fact that the bank messed up our account and took money out of the wrong one for an investment of my lump sum and our account is overdrawn to the tune of 10,000 euro and I cannot access money for the shopping.
The bank is open this morning and so at least I hope to get money out.
Best wishes to everyone and glad that you are on the mend.0 -
Hello linali (Lindsay)
Thank you for your post. I was very pleased to hear from you and to have all your news.
I was interested to know that you had been to a cancer conference and I can understand that there is nothing new to report. It could be that with breast cancer, the different kinds and the different receptor statuses, as well as the collection of drugs available, there is nothing new at present. I keep my ears and eyes open and have not come across anything of great interest.
I think that the negative information on the internet is probably the main reason why so many women that are diagnosed with breast cancer with TNBC receptor status are so frightened. I do not think it is any worse or any better than any other diagnosis of breast cancer and TNBC has a lot about which we can feel positive. The people with hormonal breast cancer and especially it would appear those that are triple positive, may have a lot more about which to worry. My friend is going through chemotherapy for metastatic breast cancer with HER2+ and that, after just a few years since the primary.
I was interested to know that Professor John Crown has set up a new research network in Ireland and that TNBC is the main focus of one of his researchers. Keep us up to date if you get any information.
I think we can all understand that some patients do have long term fatigue and cognitive changes after breast cancer treatment. Chemotherapy and radiotherapy are toxic, extremely toxic, and will have knocked our bodies for six. We really have no idea what these treatments have done to us and what can result from them years afterwards.
I do hope your programme with your counsellor will help.
I do hope, as well, that all will go well for Damian and that he will not have to wait too long for his tests. I know from friends and neighbours that they are all getting very frustrated about the never-ending waits for treatment under the NHS here in the UK. There have been so many cuts that it is a wonder that it is working at all. I have a policy now of staying away from doctors if at all possible. I think they just want to dish out pills.
I hope that you do manage to have a few days in London in November. A break is always therapeutic. I do hope as well that you and Leigh enjoy the Cinderella ballet on Friday.
I can see from the shops here that Christmas fever is in full swing. Raymond and I do not attach much importance to it. We do miss the family meals that we had when our parents were alive, but now we all seem to go our own way. Your Christmas cards sound lovely.
I do hope you have a meaningful question and answer session with the head of breast cancer research. I do hope you get some good questions going and especially some challenging ones. I think we all know the basics of breast cancer and we need more detailed and intricate information, and especially to know when we can move away from all this toxic treatment.
This is something that I have been wondering about. I would like to know how it is that oncologists etc. know that a cancer tumour or cells are metastatic. What is it that tells them that, when you have had breast cancer, and something is found in the lungs, liver, brain, or bones, that it is metastatic and not a new primary. I have been wondering more about this lately because I read that metastatic cells are not the same as those cells in the primary. I suppose it could be down to mutation but it would be nice to have the answer from the 'experts'.
The other thing that I have been wondering about is the following. We are told that we all have cancer cells circulating in our body all the time and that most of the time our immune system fights them off, so we need a strong and healthy immune system. Yet when we are diagnosed with cancer and have chemotherapy and/or radiotherapy treatment, we are told these suppress our immune system, so it is weakened and makes us very vulnerable to infection etc. That all seems a bit odd to me. It could be, I suppose, that is the only way of destroying fast growing cancer cells but it destroys the healthy ones as well. It does not quite make sense to me.
I was sorry to hear that Damian's older sister has been diagnosed with cancer of the uterus and cervix and I do hope she will be OK. It seems as though there is so much cancer around that those that escape it can count themselves very lucky. I do wonder what is going to happen in the long term over the high-tech world in which we live. I hear dire warnings about electromagnetic fields, such as those from mobile phones and Wi-Fi. I am especially concerned about vulnerable young children who cannot seem to without their mobile phones.
I was glad to know that you view the thread and that you pass on information to newly-diagnosed people at the centre. You can always direct them to this thread as well as it can only continue if we do have regular posters.
I do hope you will get your bank sorted out. The banks are never in a hurry to correct things. I do hate the complicated world we live in. it has been de-personalised.
It is very cold here today and Raymond and I have been trying to have a bit of relaxation and catch up with some reading. I do try to keep up with the world of cancer. I regularly read What Doctrs Don't Tell You, Healthy from Holland and Barrett, as well as Amoena and Vita, which I subscribed to for free when first diagnosed. These last two have lots of information and letters from patients going through treatment etc. I also read icon from Cancer Active, but it does not come out very often. In fact, my e-mails from Cancer Active and from What Doctors Don't Tell You seem to have slowed down as well. Perhaps there is indeed a dearth of information. I still believe lifestyle is very important as a preventive and think there should be more effort and money spent on prevention.
Keep well, Lindsay, and best wishes to all your family members.
Fond thoughts.
Sylvia xxxx0 -
HI ladies
I hope you are all well! It's been a very hectic week for me work wise and as I lay here in my bed at five in the morning I'm wondering why on earth my body won't go to sleep, lol!
I have been since we last spoke to the oncologist and have now been given a treatment plan. I have to go for a radioactive heart scan on Wed 16th. Tuea 22nd is induction day at oncology then Chemo starts on Wed 23rd. They are giving me six cycles of FEC. Anyone who has had it please feel free to tell me about your experiences with it.
It seems like Oct 16th is a big day for a few of you so good luck to Sam, Jackpot and Apandy (Anne). I will be thinking about you all my lovelies...
Sandra xxx0 -
Hello big_leggy (Sandra)
Thank you for your post and all the information and I would like to say how much I admire how you can keep a sense on humour in all of this. I am sure that is a very positive thing.
I can understand why your body will not go to sleep. When I was first diagnosed and going through all the preparations before treatment I used to lie awake at night as well with a thousand things shooting through my head.
You must be relieved to have your treatment plan and your pre oncology now set out in dates. I hope all goes well with your heart scan on Wednesday 16th. What exactly is a radioactive heart scan?
I found the induction day quite useful as I found I could ask any questions that were going through my mind and listen to any advice that was given out.
I was interested to know that you are going to have six cycles of FEC. This combination seems to be the common one now, along with just EC. I do not know why some patients get FEC and others EC. You said you are getting six cycles. Are you getting a treatment every three weeks or every two or even weekly? I had every three weeks but I know a lot of women have had every two weeks or every week, with probably lower doses and have said they felt better.
Will you be having any taxanes (docetaxel – Taxotere, or paclitaxel – Taxol) after you have finished the FEC?
We shall certainly all be thinking of you on October 16th, 22nd and 23rd.
Thinking of you.
Sylvia xxxx0 -
Hello Jackpot
Just popping in to say we shall be thinking of you on Wednesday October 16th when you have your third chemotherapy. Since you are going through FEC like big_leggy (Sandra) you will be able to compare notes and post your experiences on the thread to help others.
How is your niece getting on?
Hello apandy (Anne).
We shall be thinking of you on October 16th as well as you begin your first chemotherapy. It will be interesting to learn how you and Sandra get on. Are you having FEC?
Hello SamUK
We shall all be thinking of you on October 16th as you have your cosmetic surgery.
Hello MartOne
I am popping in to ask whether your mother has begun her radiotherapy.
To susaninicking
We have not heard from you since you had radiotherapy on October 10th. I hope all is fine with you.
To adagio
I just wanted to wish you a very happy Thanksgiving Day and hope you have a nice family get together. I always liked Thanksgiving Day when I lived in Canada.
To InspiredbyDolce
I see from my diary that it is Columbus Day on Monday October 14th and that it is a Federal Holiday in the USA. Do you do anything special?
To sam52, chatterbox (Michael) and peterandliz
I hope you are all having a good weekend and that Liz is recovering from her surgery and look forward to hearing from you.
Best wishes to everyone viewing and posting.
Sylvia0 -
Thanks for thinking of me Silvia. Radiation is so far just easy, nice people, love how quickly it goes. My big issue is figuring out how to arrive at the hospital exactly on time so there is no waiting! I had a really warm breast after the first time only. My hospital staffs very heavily with interns and residents which has never been an issue at all for me.....all great doctors. In radiation I seem to have drawn not the brightest bulb of an intern. She has nothing to do with the actual radiation (THANK GOD!) but she is the one I have to talk to if I have questions. I think she is kind of an idiot and talking to me in a condescending tone when you are 27 and an idiot is just really a huge mistake. Hope for her sake that it stops immediately! She gave me a paper on breast care and then contradicted some things that it said on the paper and looked at me like I was nuts when I told her I had the day before had a hot breast, as if it just was not possible. I said something in passing about chemo and she actually said to me, "Frau Fleming, radiation is very different from chemo." I should have thanked her for that tidbit of information which I could have NEVER figured out on my own! I am seriously better off posing my questions here or in a rads thread. Anyway, no problems so far with the actual rads. Have a good Sunday all!0 -
Hii Sylvia
Thanks for your thoughts. Yes, I am having FEC, starting on 16th for 3 cycles, followed by Docetaxel. I am not too worried about the FEC but more anxious about the taxane.
If all goes according to plan, and it really is every 3 weeks, without fail, then the docetaxel will start on 18 December. I am wondering if I might be able to get them to postpone it so that it doesn't spoil my Christmas, but it would mean a three week delay because chemo is every Wednesday and the following two Wednesdays are Christmas Day and Boxing Day. Maybe I could just bring it forward a week instead. Has anyone here had any luck trying to postpone a treatment or bring it forward? Are they usually sympathetic?
Good luck to all about to start treatment, esp Jackpot who I believe has # 3 on Wednesday.
Anne x0 -
Hello Susan
Thank you for your post. It was lovely to hear from you and I am so glad that you can write with such a sense of humour, just like Sandra. I do so admire you both for it.
I am not surprised that you find it easy compared especially to chemotherapy. I found it a lot easier as well and the actual treatment is over so quickly, but we must remember that it is dangerous treatment as well and we must look after our skin. When I was going through my radiotherapy it was in June/July 2006 and we were having a heatwave here and major roadworks on the way to the hospital. I was always worried that I was not going to arrive on time but I did and got dealt with very quickly each time. You seem to be in and out in no time at all.
I had to laugh at what you said about the intern to whom you had to speak. She has no right to speak in a condescending manner and you had every right to put her in her place.
I do not remember having much in the way of conversation with staff during radiotherapy. I used to arrive, acknowledge a few of the patients whom I had got to know, then was called in by a friendly nurse and went straight to a cubicle to remove my top clothes and put on a smart little smock that I had been given at my pre-radiotherapy interview, and then was called in. A friendly radiographer would tell me to get onto the table, lie down and would then undo the top of the smock, look at the markings and position me for the radiation. The staff would then turn of the lights, leave the room and start the machine. It moved around over me. I used to close my eyes and count the seconds and before I knew it the treatment was over, I was back in the cubicle changing and then on my way home. I did find it tiring going in every day five days a week, but you get through it. I carried on the rest of the day doing what I felt like doing. I used aqueous cream to wash in and made sure my skin was well moisturised with it. I know that some women experience redness and burning but I did not. Strangely it was after I finished the radiotherapy that I had a little bit of redness. I went to the hospital to the radiotherapy department and they had a look and said it was nothing to worry about and that I could put some aloe vera on it if I felt I wanted to.
I really had to laugh at the Frau Fleming bit and the stupid statement about chemotherapy was different from radiotherapy. Well, having gone through chemotherapy, we never would have guessed that would we now!!!! Stick with us, Susan, through your radiotherapy. We shall guide you through. Let us know if you do get any further 'enlightening' information!!
Fond thoughts.
Sylvia xxxx0 -
Hello Anne
Thank you for your post and it was lovely to hear from you. Your avatar looks lovely.
You will get through your chemotherapy and do not worry about the taxane (Taxotere, docetaxel). Just remember that the taxanes are supposed to be very effective for fighting breast cancer with triple negative receptors. You may get the metallic taste in your mouth but it is not that bad and you will be able to deal with it. If you do have discolouring of the toenails they soon recover. I had my first treatment about November 17th and I was having treatment every three weeks, so I would have gone for the second treatment two weeks before Christmas and I was fine during Christmas. If you want to postpone an appointment I would talk it over with your oncologist and see what they suggest. I do not think I would have postponed an appointment but that is just my own opinion. I am sure they will try to accommodate you.
We shall all be thinking of you on October 16th as well as Jackpot. Good luck to both of you. I have also noticed that on December 18th both you and big_leggy (Sandra) will be starting docetaxel. Sandra begins FEC on Wednesday October 23rd. We have three of you going through chemotherapy. Do not hesitate to come to us with any questions or problems. Please remember to drink plenty of water, get plenty of rest and keep looking forward. Try to eat to keep your strength up. Small meals and snacks will probably suit you better.
Thinking of you.
Sylvia xxxx0 -
Hi Anne,
They cannot bring your treatment forward as you need time to recover. Its not uncommon for patients to fail their blood test a few days before their next chemo, delaying there next round by a few days. This nearly happened to Liz once but they tested her again the morning of her chemo and her blood levels had risen. If they had not she would have been tested again 2 days later.
We asked a similar question when Liz was having chemo about having an extra week in the middle of treatment but they said no. Something to do with cells growing back after 3 weeks. That's why the chemo was given every 3 weeks!
Peter0 -
Hi Anne,
I just wanted to add in my 2 cents worth about DOC. This was not the chemo that I did but I have a friend who did do DOC and ended up losing several toenails. She did not know about ice at the time 3 years ago. I iced all through Taxol and also used hardners on finger and toenails. I do not know if this saved me but I did lose one toenail with EC (a rare occurence they tell me) and none with the taxene. If I had it to do over I would ice again. For sure. I did chemo with 3 medical doctors (a pediatrician, a gynocologist, and a radiologist) over the 6 months and all advised ice. One iced her hands but not her feet and said she felt it was a mistake to have left out her toes! Good luck with chemo....it's not all that much fun (unless you sit with the right people!) but you will get through it. Before I started I really felt that the end would not arrive this year and before I knew it I was up in chemo boohooing because it was my last infusion and I was going to miss everyone! I have a fabulous cancer kicking calendar with stickers on the days and I LOVE looking at what I've accomplished this year!0 -
susaninicking - I used ice for both my feet and my hands during taxol treatments. I was a bit paranoid of getting neuropathy, so I took it upon myself to be very proactive in icing. Of course, I did have to bring all the paraphernalia with me to chemo, but I feel it was worth it - I have no neuropathy, didn't lose any nails nor did I have blackening of the nails.
Anne - in terms of scheduling your treatments around Christmas - you might find that you want the continuity of treatments - plus, depending on your blood counts they may be delayed a few days - I have never heard of getting chemo earlier than scheduled - you will appreciate why once you start your treatments!0 -
Sylvia - thanks for the thanksgiving greetings. I have had a wonderful time with my family sharing a lovely thanksgiving dinner. The weather in Vancouver is amazing - sunny and mild for October. We went for a long walk on the beach today - stunning - and absolutely thankful that I can enjoy it . This past year has been a tough one - but am grateful that I feel so much better mentally and emotionally than this time last year when I was just beginning the unknown journey of breast cancer - now it is behind me. Onward and upward with a positive spirit and doing all that is within my power to prevent a recurrence.0 -
Hello adagio
Thank you for your posts. I was glad to know that you had a wonderful time with your family for Thanksgiving. These occasions give meaning to life.
When you look back over the past year you must wonder how you did it all, but you did and I can understand the feeling of optimism that you have now. Keep going forward.
There has been a lot of bad news on the Calling all TNS and I do find that it affects me and upsets me. It is so awful to know there are these young women dying and leaving young children behind them. We cannot depend on drugs or a magic bullet. We must do everything we can in our lifestyle to prevent this awful cancer coming back.
Thinking of you and sending my best wishes.
Sylvia xxxx0 -
hi Sylvia
Glad your feeling well again, I think is always better if you can find something natural to help heal you than popping pills that the drs so readily dish out,
I've not been too well myself for a few days probably some sort of bug and fatigue has been a problem,I also have had to have a bone/ct scan last week due to pain in my spine and I get the results from them on the 16th when I go for fec #3 so a big day for me...I noticed it seems to be a popular day for apts for everyone...hope it alls goes well for Sandra Anne and Sam
I was interested to read from linali that there is a new research centre in Ireland with a lot of focus on tnbc....the only down side is that it can take years for any new research to become a treatment but ill be interested to read Any further info on research that comes from there
I joined a Facebook group of just girls who started chemo in September and I am finding it very supportive going through chemo side affects etc at the same time...just knowing something is normal is a big help
My Neice has not been too well...getting chemo four days running has really taken it out of her but it doesn't look like it has been very effective she's having a scan on the 23rd and depending on the results of that it looks like their going to remove her stem cells and put her in isolation for three months while they continue treatment as she will have no immune system....that will seem an awful long time for a young girl....just praying this treatment works
Thinking of everyone with chemo rads or scans this week
Take care
Jackpot0 -
HI ladies
I hope you are all well! Jackpot... I hope your niece responds well to her treatment and I'm sorry to hear you're feeling under the weather. My fingers will be crossed for you when you get your scan results on Wednesday and good luck with the chemo
I'm looking to pick your experienced brains!!! Since my surgery I've healed remarkably well. My tumour sat immediately beneath the breast (where your underwire sits) on the ribcage. I had pain and swelling for a few days then it subsided. I returned to wearing my bra (don't know why I do as I have the equivalent of a couple of bee stings but can't leave the house without wearing one as I feel naked) and I have had no other problems since........until the weekend! I woke up on Saturday with an intense pain in my ribcage. As the day went on it progressively worsened to the point I had taken painkillers and ripped off my bra. It continued to worsen throughout yesterday and by last night I looked as if I had a piece of rope stuck under the skin joining the base of my breast to my lower ribcage. Very very painful!!!!! I phoned the breast care nurse this morning and she called me in to have a look. It turns out I have Mordons Disease which is basically a thrombosis of the superficial veins and is a very rare complication of surgery (only two or three cases seen each year at the Edinburgh Cancer Centre). All they can do is offer anti inflammatories and painkillers. I have been told this will go away on its own but may take up to 12 weeks. Looks like without my luxuriously uplifting and breast enhancing bras, I'm going to work for the next three months disguised as a boy, lol! At least I'll have the hairdo to go with it ha haaaa!!!! Has anyone else experienced this complication?
I've been looking through your profiles and notice that a taxane or equivalent seems to be used in your chemotherapy treatments. I'm not getting FEC-T only FEC and I'm not sure whether I should be concerned or not as this seems to be the preferred drug for tnbc. Hmmm, any words of wisdom would be gratefully received before I go and cause a riot at my induction on the 22nd.
Sylvia... You asked about the isotopic heart scan. This is being carried out as ellence can be attributed to heart failure. I have congenital hypertension which has been perfectly controlled with drugs since puberty. Prolonged hypertension can weaken the left ventricle heart muscle so they are carrying out this scan as a precaution to ensure that my heart is fit to cope with the chemo.
Sandra Xxxxx0 -
hi Sandra
Thanks.... I'm feeling a little better now so hopefully it's nothing that will delay chemo Wednesday...and thank you for your kind words for my Neice it's a worrying time...
I've never heard of mordons disease, you were certainly unlucky to get this if there's only a couple of cases a year, at least it doesn't sound like their too concerned about it and It will clear up on its own,I would deffo go bra free for a while as it might irritate it, I'm sure your rocking the bald look right now...there's something to be said for not having the whole hair do thing every morning ha ha
I can't understand why your not on fec-t, taxotere is definitely the poison of choice for triple negs these days I would be asking why your not being given this....just thought it could be because you have heart condition as tax is supposed to be a bit harsh on the heart, but worth asking
Hope your scan goes well
Take care
Jackpot x0 -
HI Sylvia
I forgot to answer your other question, sorry! You asked about my FEC regimen. It will be six cycles, three weeks apart, starting on Wed 23rd. Looking at the calendar, this means I'm due Christmas day again. I'm assuming they won't do it that day so hopefully boxing day. I'm hoping this means that I should feel well enough to cope with a five year olds excitement. Not only for Santa but it's her birthday on the 21st also...
As far as I'm aware, there is no taxanes scheduled for me, only FEC, followed with four weeks of radiotherapy and one week of boosters.
Take care hon... Xxx
Sandra0 -
Hello Jackpot
Thank you for your posts. I do agree that it is better to steer clear of all the pills that the doctors dish out.
I was sorry to read that you have not been too well for a few days. The chemotherapy is probably making you feel below par, but remember you have already got two behind you. I do hope everything will go well for you tomorrow. It is always the waiting that is very stressful as you cannot put your thoughts to rest. I do hope that you will have good news about the scan. It could be that the pain in your spine is the result of the chemotherapy treatment. it does take a toll on the bones. I still think that my osteoporosis was caused by the chemotherapy and not the hyperparathyroidism.
I do not know what is going on but everything seems to be happening on October 16th or October 23rd. My friend and neighbour here with metastatic breast cancer is going for her second lot of chemotherapy tomorrow. I do hope she is going to be alright. I do know that she is having docetaxel (Taxotere) amongst other things. I shall be thinking of her, of you, Sandra, Anne and SamUK. I do hope SamUK is alright, as we have not heard from her in quite a while.
We are fortunate to have linali (Lindsay) with us on the thread, as we get information from the centre that she goes to. It is true, of course, that it takes years for research to become treatment. I would certainly like to see something less toxic than these chemotherapy drugs and radiotherapy.
I was interested to know that you had joined a group of women on Facebook and that they started chemotherapy in September. It is a point of reference for you. There seems to be so many closed breast cancer groups on Facebook. Is there anyone supervising these groups, such as the moderators here, looking for anything out of order? It is so important to remember that our reaction to these drugs is very individual and depends a lot on our health history before the breast cancer diagnosis and I think, also, on our own inner strength and psychological make up. We have to remember that we may not suffer the side effects. It may also be that an individual can so worry about side effects that they become a reality.
On your Facebook group have any of the women suffered side effects that we have not discussed on this thread? The most common seem to be nausea, fatigue, sore mouth, problems with the hands and feet, nose bleeds, and low blood cell counts, both white and red, and, of course, infections.
I think it is very important to ask your oncologist or other medical staff anything that is bothering you.
I was sorry to read that your niece is not too well and I can just imagine how difficult it must have been having chemotherapy four days running, and I was sorry to read, as well, that it has not been very effective. I do hope she will have good results on October 23rd. This seems to be the other date on which a lot is happening, especially big_leggy (Sandra).
On October 23rd I have a directors' meeting in the apartment complex where I live. These are important meetings in which the running of the complex is discussed and we have to issue minutes, a newsletter to the owners and agree on the budget for next year, as well as any work that needs to be done. I do it as a volunteer but it takes up a lot of time. The same day I have an AGM meeting for the political party to which I belong. It is going to be a tiring day!
Going back to your niece, it sounds as though she could have some very difficult months ahead if she has to go into isolation.
That is about all for today.
Fond thoughts.
Sylvia xxxx0 -
Hello big_leggy (Sandra)
Thank you for your post and for the explanation about the isotopic heart scan. I was also interested to know that epirubicin (Ellence) can cause heart failure and given that you have congenital hypertension, I can understand why your oncologist is being prudent.
It is just awful what these toxic chemotherapy drugs do to us, but they keep us alive. Because of your condition it may be that your oncologist has decided not to give you docetaxel (Taxotere) or paclitaxel (Taxol) as they do affect the heart. I asked my oncologist before I began treatment why I was getting Taxotere rather than Taxol and she told me it was because it affected the heart less than Taxol. Before and after chemotherapy I was given an ECG to check on the function of the heart and all was normal before and after treatment.
I do hope all will go well tomorrow when you have your radioactive heart scan.
Thinking of you.
Sylvia xxxx0 -
Hi All
A quick update.
I had my per chemo meeting on Monday, and, as many of you suggested, I can't postpone the Docetaxel to allow for Christmas. My impression was that the Registrar who saw me was open to postponing it but the problem arose when I pointed out that the next two Wednesdays were Xmas Day and New Year's Day, which would have meant a three week postponement! Had it been just one week I think she would have agreed. Anyway, she reassured me that I should be ok a week out the chemo, but just to be careful about infections as that will be the point in the cycle when my immune system is lowest.
I am pretty much ready for tomorrow and have my 'chemo bag' packed. I have a wig appointment first at 12.00 noon (I decided to go even though I'm not sure I will wear a wig) and the chemo is set for lunchtime. At least I don't have to get up early tomorrow!
I am also part of a Breast Cancer Facebook Group. I started a thread on the Breast Cancer Care website for those going through chemo in October - the 'October Optimists' - and we now have our own private Facebook group. They are a great bunch and we are sharing lots of advice and experiences.
Best wishes to all and to Jackpot for tomorrow,
Anne0 -
Hi Sylvia
First I want to pass on this link, http://www.newsnet5.com/dpp/news/local_news/oh_lake/cleveland-clinic-conducts-clinical-trials-on-breast-cancer-vaccine, which I think is exciting news. I will put it on the foundation website tomorrow.
Bruges was lovely and the weather superb. I am, hopefully, in Portugal next week. My Stepson has had his girlfriend over and his friend who is en - route home to the USA. Lots of people fly through Dublin as the air tax is only €3 and you do US immigration and customs in Dublin. I have given up cleaning and the dog and I are surrounded by pots and pans and the smell of cabbage (they are vegans).
I will do some catching up on what is happening on the group but I hope things are going well for everyone.
Michael0 -
Hello apandy (Anne)
Thank you for your post. I think you should probably be alright with your treatment on December 18th as it gives you about a week before Christmas day. Women often say the first week of each treatment is the worst. That was good advice about avoiding picking up any infections. I was told to avoid all crowds, especially supermarkets and shopping malls. I also avoided visits to my surgery because I think that is a very likely place to pick up infections and did not have anyone in my home with colds or flu.
As I type this post I hope that your first chemotherapy treatment is over and that you are back home resting.
I was interested to know that you are part of a Breast Cancer Facebook group and that you had started a thread on the Breast Cancer Care website for those going through chemotherapy in October. I like the name the October Optimists. What made you leave the Cancer Care website and form your own private Facebook group? So many patients seem to be part of a private Facebook group that I keep wondering how many of these private groups there are and whether they are divided into different groups according to the type of breast cancer, of which there are many, and the receptor status or whether you are divided according to where you are with treatment, surgery, chemotherapy, radiotherapy or post treatment if you have hormone positive receptor status.
Thinking of you today.
Sylvia xxxx0 -
Hello Michael
It was nice to hear from you. We have missed you on the thread.
I was glad to hear that you enjoyed Bruges and I hope you have a good time if you go to Portugal. Is it a holiday or is it connected with your work?
I was interested to know about going to the USA via Dublin. One of my cousins has been away in Hollywood this past week with her friend, who won a trip there and invited her along. They were not looking forward to going through US customs as the customs people are very severe.
Do you think you will ever get your home back to normal? I do not think I could stand all those pots and pans as I like everything in its place. Just how much cabbage are they eating??
I do hope you will be able to catch up with the posts and post in with your own tips and information.
Thank you for the link. I have just read it and it does give hope but again it could be ten years away. I wonder what is in the vaccine in that the researchers say they hope it will prevent breast cancer and also help with recurrence.
By the way, Michael, do you think that breast cancer can be described as cured and curable? There seems to be discussions going on about this on some threads. My own opinion is that the available treatment brings primary breast cancer into 'no visible evidence of disease' but in my mind that does not mean cured. If it were a cure there would not be recurrence or spread, but there could be a new primary in either breast. I am eight years and four months out of diagnosis but I certainly do not consider myself cured and my oncologist has never said that I am. She has just said that after ten years she will discharge me.
There are people on this forum that have had their cancer come back or spread after much longer than eight and a bit years, so they obviously were not cured.
I think you have to be careful what you read on the internet.
There is also a lot of discussion about your percentage chance of recurrence. I do not take any notice of this as your body does not deal in percentages.
Thinking of you and hoping your are keeping well and that the Janette Collins Foundation is progressing.
Do you belong to a cancer Facebook group? I hope you do not mind my asking.
Best wishes.
Sylvia0 -
Hi Sylvia
I am going to Portugal for a short break. When I have gone to the Algarve in the past I have always flown to Faro and headed west but this time I am going east to a town called Tavira.
I am sure as soon as it is just Alex, the dog and I in the hous, order will be restored. The main problem seems to be that, Alex being vegan, the only food stuf f we have in common is Porridge so there is a storage issue. I had ordered a new kitchen so when that is fitted we should be ok.
I don't think breast cancer, or for that matter most cancers will be curable in the next decade. The disease is just too complex. Looking at NHL, I have been following progress since 1996. There has been huge amount of research, probably more than most other cancers but apart from the monoclonal antibodies there has been little progress. The antibodies have made a big difference to disease free survival but as far as I know not to overall survival. Back in 2000-2001 trials started on vaccines but they were a failure. I think that before Janette died I was quite optimistic but I am afraid that has gone and in many ways I think I have become a fatalist. Anyway on a happier note, it is another stunning autumn day. Yesterday was the only bad day we have had for a long time, lets hope it lasts.
Michael
0 -
Sylvia
Thanks for your post. I had my first chemo yesterday and it went well, overall.
The main drawback was I went to bed early at 9, as I was feeling drowsy, but was up from 2-5,unable to sleep, but managed to get back to sleep from 5-9 am, so overall a good few hours.
I am pleased to say I was given Emend for one of my anti sickness pills. I was told I woudl have an extra strong anti sickness med as I have a history of sickness and nausea, but I was not expecting Emend as my BCN said it wasn't given. But perhaps she meant routinely. So I was pleased as I hear it's the best anti sickness med. That proves to be true because I am feeling fine today, just very drowsy. There has been a bit of nausea but the Emend has helped that. I am managing to eat normally. Today I took my daughter out to meet her dad for a pub lunch (her school was closed today due to the strike) as he can't see her this weekend. We had a good meal (I had gnocchi), I just had water rather than any alcohol.
I haven't left the Breast Cancer Care forum, I am still there. The October Optimists thread is still going strong there and new people are joining. There are also lots of other threads on the site to read or take part in.
There are several advantages to setting up a private Facebook group: first of all you can share photos on there. Several members have been posting pictures of their wigs and other photos. Another thing is we can all start separate threads for different topics rather than have everyone posting in one long thread and some new topics possibly being missed. The group is private so I am not worried about unsavoury characters appearing as they have all come via October Optimists. There is no moderator, true, but that doesn't worry me. We are all adults and so can moderate our behaviour as needed. If I start to feel uncomfortable I can simply withdraw from the group, just as you can withdraw from a situation in real life. Everyone seems lovely and we are all supporting each other, offering advice and having laughs.
I believe there are other private/specialist groups on Facebook now, including triple negative, but I haven't joined. For me, at this stage in my treatment, my triple negative status seems less relevant than it did earlier on. What makes someone in common with me now is having FEC-T, like me, or about the same stage in their treatment. Not all of these are triple neg but chatting to them is worthwhile and helpful regardless. There are also other groups on FB for different types of treatment and stage of treatment, like October Optimists, many of which have started on other sites. I know this is true of many of the monthly treatment threads on Breast Cancer Care.
I hope everyone is well.
Regards to all.
Anne0 -
hi Sylvia
Good news my bone scan was clear, can't tell you what a relief it was, the dr I saw I'd never seen before and was very cold in his delivery of the results and didn't seem to have any concern that I had fretted over these results for nearly two weeks...
I also voiced my concerns about having taxotere and he insisted peripheral neuropathy was not a side affect of taxotere nor was nail loss, even when I said I had spoke to woman who had suffered this and it was also listed as a side affect in the information sheet I was given he still wouldn't admit to taxotere being the cause of this and also said taking a b complex pill would offer no protection, it was quite a frustrating appointment.
Ive had a couple of sickly days since chemo but at least that's three down now and three to go, I havnt managed to eat anything today but I am drinking water and usually I'm ok again by the Saturday, you get used to what side affects to expect but now will probably get new ones next time with the change to taxotere,
It is helpful on my Facebook group going through this at exactly the same time as everyone else and I do feel that I'm getting off lightly re side affects compared to some of the girls, some of who have been hospitalised more than once...low blood counts seem to be the main problem, also allergic reaction, but everyone's holding up and keeping their sense of humour which is good
How did your friends second lot of chemotherapy go, I hope the side affects weren't to harsh...thanks for your concerns for my Neice, there's nothing new to tell you she's just trying to be "normal" for the sake of her family till her scan date comes around to see if the chemos working, I really hope she doesn't have to go into isolation that's going to be so hard for her
Take care
Jackpot0 -
Hi ladies
I how you are all well!
Anne.... I really hope I do as well as you when I start my chemo on Wednesday. Although just now I'm absolutely loaded with the cold and ironically had the flu jag last week, pffttttttt!!!! Can I please join your Facebook page? Xx
Jackpot (I'd love to know your name)... regarding the bone scan YAYYYYYYYYYYYY!!!!!!! :-) :-) Xx
Michael... I'm Sooooooooo jealous! I love Portugal especially Villamoura. I hope you have a great break :-) Xx
Sylvia... I asked my oncologist about the lack of taxanes in my regime and was informed by two of them that as my lymph nodes were clear, taxanes were not necessary. ???? Hmmm, not sure but two oncologists said the same. So my next question is then "why are you sending me for an mri on the 07th November? ". I Hope you are well... xx
Take care... xxx
0 -
Hi ladies,
I find myself feeling a bit startled about the Taxane info above. I thought the Taxanes were such a cornerstone of BC treatment these days that one of them was standard. I have also been thinking that the more aggressive the chemo the better for TNBC. This is the first I've ever heard of a taxane not being involved at all. My lymph nodes were also thankfully clear. Is a second opinion possible big Leggy? I started at one hospital, went for a second opinion at the urging of my GP and ended up choosing a different, much longer, but easier chemo at the second hospital. When your life is on the line I'm a believer in asking around.
About the side effects I think it is incredible that a doctor would deny a neuropathy side effect when so many women have experienced the problem. It is documented everywhere. Nail issues too. I had one friend who lost 4 nails on each foot with Doc. Go to war against these side effects. I have touch of neuropathy but mild and my best guess is that ice saved me. I iced during all Taxol infusions. Hands and feet. I had great medical care but I did not learn about these SE's from doctors, but from here on BC.org and from women who have experienced the full range of everything.
All the best ladies in navigating chemo.0
