Calling all triple negative breast cancer patients in the UK
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Bak,
Your house sounds like lots of fun!! It's funny that the chickens stalk the cats but don't attack. A friend of mine with a rescue has the same situation - she has quite a few feral cats there and chickens and they all just run around in the yard together. I love watching animals interact - each one of my "fur kids" is so different - they are all so individual.
I hope you get good results from your chemo and am glad you are doing well on it.
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Hi everyone, not been so good since chemo 5. Due no 6 this thursday but am getting a cold so see how that goes. Had to finally stop working just too tired.
bernie
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Hey Bernie Ellen, I've noticed I'm getting more and more tired with each treatment. Today is the first day I feel like I might make it a full day at work, not looking forward to it but I have to try, no more vacation/sick days left. Hope you start feeling better soon. Is #6 your last? I'm doing 6 rounds of TAC so my next will be # 5 next Thrusday.
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Hello christina1961
Thank you for your post. They are always interesting. I am so glad that you have found something to do that is emotionally rewarding. You must be a very compassionate person and I am sure that animals are very lucky to have you in their lives. Keep up the good work. You must be very hard-working, to have built up your own business.I am still puzzled about oncologists telling their patients what percentage risk they have of recurrence. Once you have had all your treatment, and have gone onto hormonal medication, if it applies, I thought you were told that you are in the clear in that there is no visible sign of cancer. I may be wrong, but I cannot see how oncologists know a patient's risk of recurrence. Of the people I know, in Exmouth, who have been diagnosed with breast cancer and gone through treatment I do not know of anybody who has been told about a risk of recurrence. All I was told after all my treatment and a final CAT scan and bone scan, was that there was no visible sign of cancer.
I do hope that you will be able to get onto a trial, if you think it will be of use to you, and I can understand that you will keep on with the Arimidex what ever happens. If I were you, I would make sure you have DEXA scans to keep an eye on your bones.
I do hope everything has gone well with your radiotherapy staging today and that all will go well when you start your radiotherapy next week. When I went for my radiotherapy staging I found the replica machine quite intimidating, but I soon relaxed and let the experts do all their measuring etc. There is nothing of which to be afraid. As for the actual radiotherapy, it all happens very quickly. The most time is taken up making sure you are properly positioned on the machine. The actual radiation is over very quickly. I used to close my eyes and count the seconds. The most tiring part is that you have to go in every day for five days, have two days break at the weekend and then start another five days. I had three weeks of this, so fifteen days plus boosters. Do you know how many weeks you will be having? I had no side effects from this of which I was aware.
It looks as though your next job is to get through radiotherapy and get on to the eribulin trial. Let us know what happens about the CMF trial plus Avastin. It sounds as though that might be quite taxing. We must all remember that these drugs take a toll on our bodies, especially our immune system.
I can understand your reluctance to take HRT. I am surprised that it is still being prescribed. Our experts tell us that the benefits outweigh the risks. I have a neighbour who developed hormonal breast cancer after being on HRT for ten years. She is convinced that it caused her breast cancer. I also wonder about fertility treatments. The sister of one of my sisters-in-law developed hormonal breast cancer about three years after fertility treatment which produced twins. What happened with your sister and her breast cancer? I think it is probably better to suffer the normal effects of menopause rather than try to stop them by artificial and what I consider to be unnatural ways. I do wonder as well what birth control pills are doing to women's bodies.
Congratulations on taking up a walking programme, even though your knees and feet hurt. They say no gain without pain! Have your knees and feet suffered from chemotherapy? I usually like to walk, but have not done much these past months because I developed plantar fasciitis under the heel of my left foot. It has been painful and is only just beginning to feel more normal after six months.
We on the thread are all thinking of you and wishing you well on the next part of your journey. I hope anyone reading this thread that has experience or information about eribulin or the chemotherapy CMF plus Avastin, will post and share all that with us. This is what our thread is about.
Sylvia.
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Hello bak94
Thank you for your post to the thread. It was really interesting to read. It was nice to hear from another person dedicated to animals. Your animals must keep you very busy. Since I am a town girl, who was born in London, and spent the first twenty years of her life there, I was so interested to know about your animals. What a kind person you must be to have rescued those animals and given them a better life. Do you have quite a lot of land for your goats and other animals? I was intrigued to know that you have five parrots! They must be very entertaining. You must be kept very busy with your chickens. I can understand how entertaining it must be watching all the animals interact. Like you, I have no children. I have five nieces, one nephew and one great nephew. I also have the son of one of my friends, whom I looked after quite a bit when he was a baby. He is now fifteen, but we have remained close. I have watched them all grow up and I think they keep you young at heart. I am sure that the children in your life must have a great time with the animals.Thank you for your appreciation of the thread. I was so glad to know that your Abraxane treatments are going very smoothly so far, and that you have had no side effects from the Zometa (zoledronic acid). I understand from my reading that Abraxane is proving to be successful in breast cancer treatment. I understand that it is like Taxol (paclitaxel) but that it is solvent-free, whereas Taxol is solvent-based. I also understand that Abraxane can be administered by injection in thirty minutes. I do not know what difference solvent-free makes, but think it might be less toxic.
It sounds as though you have really caring chemotherapy nurses and that they do everything they can to make you more comfortable and lessen the side effects.
It looks as though, in both our countries, access to drugs is always dependent on cost. It should not be like this. Thank you for letting us all know that Abraxane is more expensive than Taxol and that is why it is not probably standard treatment. I remember all the battles here just a few years ago that women had to obtain Herceptin for HER2+. The women won those battles by going to court to obtain the drug. I think there were also battles here not so long ago to get Taxotere (docetaxel). Now, I think it is standard treatment here for primary breast cancer. When I have looked up Abraxane, it does say it is for metastatic breast cancer, but it looks as though now they are using it for primary breast cancer.
Remember that we are all thinking of you on this thread and wishing you all the best. Good luck with the Abraxane and good luck with the Avastin, which I think you are starting today.
I was wondering how old you are, as I am trying to note down ages to see how they average out, because we are all told that TNBC affects younger women. Have you any theories about why younger women are being diagnosed with TNBC?
Sylvia.
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Hello Bernie
Thank you for your post. I was sorry to hear that you have not been feeling so good since you had chemo 5. The experts tell us that the chemotherapy treatments do build up and that we feel worse and worse as the treatment progresses. I do hope that you will be able to get number 6 out of the way and that your cold will not delay it. You will feel ecstatic after that last treatment is over and you will soon pick up.How are you coping with your husband away? I remember that your mother-in-law was coming over to Ireland from England to look after you during your last treatment. Do you have someone to support you this time? I remember that you said it is very isolated where you live. I cannot remember whether you have any children.
Look after your self and keep posting for support.
Sylvia.
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Hello mccrimmon324 (Heather)
I just wanted to let you know that we are all thinking of you and that we are wishing the end of treatment for you. As I said to BernieEllen the tiredness does apparently build up. Take it easy if you have to go to work. Keep looking forward. You have just two more treatments to get through.How is life in Florida? I have friends who are on a three week vacation in Florida. They have e-mailed me to say that they are having a wonderful time, but are suffering from the heat! They have said thank goodness for air-conditioning, since they have been having temperatures of 90F.
Sylvia.
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Hello everyone.
I hope you have all started the week off as well as can be expected. Please post to support those who are having a difficult time. Any little bit of information or words of comfort are important.I was wondering how suze35 was getting on and how the drugs that she is taking are affecting her. I think that she is on Avastin, so she will have information on that for others on the thread. I think, also, that she is taking Xeloda and Ixempra. As far as I remember, not many of you are taking these. If you are viewing, suze35, please let us know how you are.
I would like to thank our American friends for their great contribution to this thread.
That is all for today.
Sylvia
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Thanks everyone for your thoughts. This is a quick post before I have second round of, now lets see my 4th chemo regime, really hope this does something, although at the moment pain is getting worse not better. Still am giving it one more round.
Bak94
Re the Parps it sounds like the US has dropped them altogether but for what its worth(I know it may not be an option but I think (cant promise) but in case it helps I think the Royal Marsden in Sutton, England is still running one, Olaparib, phase I, same trial might be availble in Spain Barcelona as a Phase II but not absolutely certain, I had looked into when I thought I was BRCA but I was not. Good Luck.
Josephine
Good Luck with the scans.
T
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Sylvia, I am 44. I was 36 when diagnosed with my first breast cancer.
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Thanks mccrimmon and sylvie, starting to feel better now. Was so tired just slept. Hubby is home at the minute so i'm being well looked after. I don't have children but my my niece moved over from england when she was 16. She's 24 now and all grown up. Living about three miles away - she's the daughter i never had.
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Hi to all and thanks to all of you that wished me good luck with scans yesterday. Was pretty awful for different reasons. First canula failed, and second canula which worked was probably in a vein too small as the vein collapsed so most of CT scan fluid accumulated like a tennis ball in arm, had second canula for bone scan that worked a treat, but could not do normal bone scan as I could only lie flat for five minutes before every met in my rib and spine gave out (or the healing proceses!!) docotor had to come to suite and reorganise scanning procedure. Took almost three hours as I had to sit up!! Anyway see palliative care doctor tomorrow to try and sort out my pain minus gettin the side effects and scan results from Onc on Friday. Have any of you had your port used for scan's Apparently fluid is too viscous and is put in under pressureso that it might explode? the valve in the port? personally I think it down to expertise and confidence. Most often mine is done by very nice competent but not very brave technicians, but not the docs? Good luck to all of you, will be interested to seemy results on Friday and strangely not fazed about new activity if that is so, just need to sort out this dreadful pail I have (getting worse). Have to go, blurry vision with suns? opiates again
J
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Hello TEK2009
I was sorry to read that your pain is getting worse and I do hope that your fourth round of the chemotherapy regime will bring some relief. If I remember correctly, you are on carboplatin. Is there anything else that you can try?It seems such a pity that the PARP inhibitors are not readily available. I think all the trials are too long and slow and there needs to be a way to speed things up. Although my information is that the PARP inhibitor, olaparib, is undergoing therapeutic trials for the treatment of cancer in patients with BRCA1 or BRCA2 mutations, I have also read that PARP inhibitors work well with TNBC.
We are all thinking of you TEK2009 and sending you our best wishes. I hope you can find some pleasant things to do to take your mind off the pain.
Sylvia.
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Hello bak94
Thank you for letting us know your age. Keep letting us know how you are getting on.Hello BernieEllen
Thank you for your post. I was glad to know that your husband is home at the moment, so you are being well looked after. On chemotherapy a person does need a lot of support and rest. I remember reading about setting up a group of friends and relatives if possible to help out with practical things, like bringing a meal if you do not have the energy to prepare it. People do want to help. I was glad to know you have a niece to help you as well.
I was glad to know that you are staring to feel better.
Hello josephine_
Thank you for your post. I was sorry to hear that you had a bad time with your CT scan on Monday. It is bad enough having to go through all of this when things go normally, but to have extra problems must be really exhausting. I was glad to know that the cannula for the bone scan was fine, but again sorry to hear that you could not have a normal bone scan because you could not lie flat for long enough. It must have been unbearable to have a procedure lasting three hours.
I do so hope that you have had a better day today and that your palliative care doctor was able to sort out your pain care and side effects. I hope you will have good news on Friday from your oncologist.
I do not know anything about ports being used for scans, but I hope that, if anyone reading this thread has any information or experience, they will post and let us know. Every bit of new information that we acquire is so important.
Once again, josephine_, all of us on this thread are thinking of you and wishing you well.
Take care of yourself and let us know how you get on.
Sylvia.
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Hello everyone
I have been reading about so many brave people on various threads and my heart really goes out to them about what they are enduring. It makes me hope that progress can be speeded up to defeat this horrible disease. In the long term I do not think the solution is with all these poisons we have to take. Somehow this disease has to be prevented. If this cannot be, and some of us have to go through the treatment for primary cancer, I think it is essential that the experts find a way quickly to prevent recurrence and metastases.I thought I would post a bit of information that I came across this week about how breast tumours can be blocked. Apparently, scientists have discovered a molecule which blocks the development and spread of breast cancer. This molecule, which is naturally occurring, hooks on to a cancer-causing protein and prevents it from working.
Scientists have identified a molecule known as Thiostrepton, which stops a protein called FOXM1 from working. Apparently, breast cancer cells show increased levels of FOXM1.
It attaches to certain areas of DNA and in so doing turns on genes which regulate the growth and division of cells, producing tumours. It then causes those tumours to spread and it even triggers the growth of blood vessels to supply the tumour with nutrients.
Apparently, the discovery of this molecule will enable researchers to create molecules which mimic Thiostrepton, but are even more effective at blocking the effects of FOXM1.
Apparently, FOXM1 is a proto-oncogene. A proto-oncogene is one that can mutate into an oncogene. An oncogene is a gene that causes cancer.
http://en.wikipedia.org/wiki/FOXM1
Another snippet of information is that survival rates have been improving for thirty years and this due to more targeted treatments. We have to be encouraged by this, but I still feel that too many people are being diagnosed with cancer in general and that progress is too slow, given how short a human life-span is.
Apparently, there is a new drug for the deadly skin cancer known as melanoma. The name of the drug is ipilimumab. It is claimed that this is transforming the lives of certain patients. This is an immunotherapy drug, also called Yervoy.
That is about all for today. It is quite chilly in Exmouth and we have some long needed rain.
Sylvia.
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Syliva do not know how you find the time but its great.
I am jealous that you are in need of rain we have way too much and it seems to move ahead of me, I probably should have come down your way, you would of had rain for sure.
T
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Josephine
Sorry about all the trouble I went through the canula problem last time I had a scan so know how horrid that is. Also you mention the blurry vision do you know which drug is causing that? I am getting a bit on my near sighted vision and I used to have perfect sight.
All the best for you results.
T
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Hello TEK2009
Thank you for your post. The weather changed here yesterday and we had some well needed rain. My husband and I had gone from Exmouth to Sidmouth just to relax and we were surprised at how cool and windy it was. We were walking back from the shops in Sidmouth to our car when it absolutely poured down and we got drenched. When we got back to Exmouth it was pouring down as well. I do not remember if you have said what part of the UK you are in, but I know all regions have had a lot of rain, except the south west, which is usually very wet.Thank you for your appreciation of our thread. When I decided to start this thread I knew I would dedicate myself to it. I have been like that all my life. I have to do things properly or not at all. I was like this all through school etc. I remember when I was about eight that one of my teachers was always telling us that if a job was worth doing it was worth doing well. It has stuck with me all my life. I wanted to have a thread that would help patients step by step with their treatment and help and support them with all their fears and anxiety. I make it a priority to keep the thread going and research any queries that come up, at the same time as keeping a look out for any new information. Without all this I feel that cancer can be a very lonely and frightening journey.
Look after yourself.
Sylvia.
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Hello everyone and especially suze35
We are all supporting you as you continue your Avastin and Xeloda treatments. I hope you can get your white blood count up. I wish you good luck with your scans in September. Keep looking forward.Sylvia.
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Thank you so much Sylvia for your good thoughts. I've been a bit quiet recently, the new drugs are causing some depression I think, and I'm in a little funk. But I'll pull out of it as I usually do. I echo TEK, you do such a wonderful job here with this thread, I really enjoy reading it. I'm also feeling some scanxiety, now that they are scheduled. Time for the Ativan!
TEK - I'm keeping everything crossed that this chemo regimen works for you. Have your doctors talked about adding Avastin? It is my understanding that it was approved in the UK for metastatic BC. Best wishes to you!0 -
I have my first avastin tomorrow. What should I expect Suze35? It will be my 3rd abraxane. I have had very little side effects so far, and had my first dose of zometa last week.
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bak - honestly, my first Avastin was nothing. I felt no symptoms or anything. They infused it over an hour, and that was it! So far, I've had three, and my nose is a bit dry and my BP is slowing trending up (120/90 today), but that's it. I'll probably go on a beta-blocker soon - my MO will put me on the one that has shown to reduce BC recurrence rates in preliminary studies, kill two birds as they say. The doctor will check your BP every infusion, and look for protein in your urine. I got my own BP cuff, and knew it was going up when my head started to get funky - spacey, slight pressure/headache, etc.
That was a book, sorry! You likely won't even notice the Avastin. Me and my nurse joke that the bag should be diamond studded and the drug the color of gold, lol. Good luck!0 -
Hi bak, I have had in excess of 12 avastin infusions (still ongoing) and no side effects (as far as I could ascertain). I do not whether you agree Suz about the side effects?. There are potential side effects such as hypertension (hence they measure your bp each time) and also kidney function and you have to give a urine sample each time which they check before you have the infusion. As you probably know avastin is a monoclonal antibody targetted against VEGF (vascular endothelial growth factor). VEGF is a cytokine whose levels are increased at sites of hypoxia (low oxygen tension) and the effect is angiogenesis (new blood vessel formation). Fast growing tumours have to continually make new blood vessels so they are good targets. Avastin drug will target new blood vessels (not established blood vessels), so will have effects on this process. For example the process of ovulation and the formation of the Corpus luteum involved angiogensis, and avastin will affect this process.
But it is a great drug and unlike chemo has a specific target!! In the US (but also in the UK) it is not approved for BC generally, but a sub group (like us) with potentially fast growing tumours are likely to have benefit. I had a tumour in the lung (could see it by bronchoscopy) and it bled easily (evidence of angiogensis). Avastin together with Taxol zapped it. Hope this helps
F
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sorry Suz, repleid to Bak before I saw you response. Agree about the dry nose though. Also Bak they cover the infusion bag with a black pouch as the drug is light sensitive (not sure why that is) but hey!
F
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Hello everyone
I just wanted to say that I am so pleased to see some of you interacting. The latest information from you about Avastin (bevacizumab) is valuable to me and everybody on this thread, because none of us knows when we are likely to need it and it is so useful to know about in advance.My understanding is that there is also another anti-angiogenic drug called Nexava (sorafenib) which inhibits signalling from the VEGF receptor through tyrosine kinase inhibition. It is used for the management of advanced renal cell carcinoma and liver cancer. I do not know if it is used for breast cancer.
I do hope that Avastin will continue to help all of you on it. Please continue to post and relate your experiences.
All of these drugs that are now being used, after the ones we have all got used to after an initial diagnosis, [Cytoxan (cyclophosphamide), Pharmorubicin, or Ellence in the US, (epirubicin), Adriamycin (doxorubicin), Taxotere (docetaxel), Taxol (paclitaxel)], will affect people differently and it is good to know these effects. Newcomers also have to get used to more strange names, in addition to the ones they are already trying to learn. We have to bear in mind that any newly diagnosed people reading the thread will have entered a new world of strange drug names and strange terms. That is why I often repeat things and with the drugs I try to put the brand name with a capital letter and the chemical name in brackets after it, without a capital letter.
Sylvia.
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Hello BernieEllen
I was just reading some of the other TN threads and saw that you finished your chemotherapy yesterday. Well done. You have got through your six month ordeal. You said you had noticed a couple of small lumps and a rash. If I were you I would get them checked out as soon as possible. Did they just appear yesterday or were they there before? You said, also, that you had to see the doctor on September 6th. That is twelve days away. If you are concerned that is a long time to wait without peace of mind. I can only say what I would do and I would try to see the doctor before.Hope you have a good weekend.
Sylvia.
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Hi friends
CT and bone scan results today, after which I went to work!!. First decision that my onc and I made was to pull the Avastin (despite all I wrote, ). I suspect benefit is only seen in combo with Taxol (or other chemo) and I had this for the first 5 months. Basically firends my increased pain everywhere is associated with new activity ...........in so many places!! I have stopped counting.. Bone mets include femurs, and right pelvis (hence sciatica) and a partially crushed/fallen/ whatever........... 4th thoracic vert (no wonder I could not lie still!!) plus lots of other stoff including new activity in lungs but (for me as a newbee in this organ) two mets in the liver. As you can see ladies I have lots to think about, will text again when I have my head around this and what our plan is to be. Some comfort now, is that I am so in tune with my body................. bone mets sometimes do not hurt at all but these do
bw to everyone and apologies for being so personally focussed, but I prefer this thread to the stage IV stuff (guess I am still in denial, but absoluely believe I am going to conquer this!!)
J
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Thanks Slyvie, hubby has arranges a big BBQ for tonight, so haven't said anything to him yet. He has been so good to me. will go the hospital on monday
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josephine, sorry to hear about the progression. did your doc mention what the next step will be? I can't believe you work! ALthough it is probably what helps keep us somewhat sane at times! My heart goes out to you.
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Bernie, thinking of you. Hopefully the rash is just something heat related or just an annoyance and when you wake up it will be gone!
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