Calling all triple negative breast cancer patients in the UK
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Hello Sylvia and everybody,
Have been skulking round the forums briefly most days, but there's been so much info on this thread and the other TN threads that I needed time to process it, especially as I've a lot on my mind regarding my own situation and decisions that I'll have to make in the future. The good news is that I had my 8th (and last) cycle of chemo yesterday...feeling hyper today as I usually do as a result of the steroids, before the 'crash' tomorrow evening...however the knowledge that this is the last one has made me feel I can cope better this time, although I do feel a bit concerned about the rest of the journey.
Saw both my bs and onc last week..the surgeon feels we should go for a mastectomy because of awkward place tumour was in, beneath nipple, (has shrunk considerably and not palpable, but will have another ultra sound before op to see exactly how much it's shrunk; after first 4 sessions it had shrunk more than half..should have gone down further since then.)He will also be removing a number of lymph nodes for testing, and if he sees signs of enlargement, or scarring will remove as many as he can, if I understood properly.We discussed options for reconstruction,(can't immdeiately as have to have rads as well) but I've thought it through very carefully, and have decided am also going to have a bilateral mastectomy, as I know I'll feel much safer, although both doctors told me that I'm as likely to get a new lump in my left breast as any other woman who hasn't had bc...But I just feel much more comfortable with this idea, and I know that I'd also be happier being symmetrical..The bs will go with whatever I prefer, although I think he thinks I'm being rather drastic, and says I can think carefully about it as I won't be having sugery until the first week of October as he's going to be away in the last 2 weeks of September. In my notes my onc only had the fact that I am triple nagative, but not the exact percentage negative, or number, as apparently the line is drawn by the radiologist, who then defines patient as TN..so am going to have to try and chase those figures..not sure I'll manage but will certainly try, although the idea of taking tamoxifen unnecessarily doesn't appeal to me much.
For those of you who have been through this I'd like to know what kind of follow-up care you had after you had finished all the treatment...for example, how often did you see your onc at first, in my case I will not be having mammograms/ultra-sounds, but I imagine I'll be examined, did you ever have Pet, or CT scans, etc, and if so how often? My onc seems to think that there isn't much point in having Pet/CT scans, as these do not improve the prognosis in case of mets, but is this really the case?
I apologise for this post being all ME ME ME when so many of you are going through an equally hard, and in some cases much harder time... I think moving on to the next stage, while wished for, is also quite stressful and I can't help wondering, what next?
Thinking especially of you TEK and Josephine, but also best wishes to all of you on this thread, take care, spoil yourselves as much as possible and do things you enjoy...
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Hello everyone
I have been reading all your very interesting posts and am so glad to know that you are supporting one another.Thank you Suelynn for your post and for joining us again. Thank you for the compliments about the thread. We are all working hard to make this thread a place of support and sympathy where everyone can get information and hopefully some peace of mind.
We all hope that your mother will make progress on the clinical trial for bicalutamide. I was glad to know that she is doing pretty well after just a week. If anyone does have any information about how this drug is working for women on it, please let us know. The trade name for bicalutamide is Casodex.
Best wishes, Suelynn, to you and your mother.
Hello bak94.
I was very interested in what you said about your doctor's nurse and the fact she had said that in their office most breast cancer patients had been put on Zometa for the past ten years to prevent bone mets with great results. It leaves me wondering how they are measuring the results. Have they got a number of patients whom they put on Zometa (zolendronic acid or zolendronate) and a number of other patients whom they do not put on it? Do they then tally up the numbers and find that those on the drug do not go on to have mets to the bones and those that do not have the drug do go on to have mets to the bones? I feel a bit sceptical about this. As far as I know, these bisphosphonate drugs are used to treat bone mets once a person has it, to relieve symptoms and to prevent bone fractures, and is administered intravenously.
Here, in the UK bisphosphonates are commonly used to treat osteoporosis. I was offered them to treat my osteoporosis, but I refused to have them, because of the awful side effects and because I read that they make your bones more brittle. I have a cousin who has been taking them for osteoporosis caused by steroid medication and it has caused her to have an inflamed oesophagus and gastritis in the stomach. Two doctors in the past have told me that bisphosphonates are horrible.
The other trade name for this drug besides Zometa, is Aclasta.
I do not know what to say about treating TNBC with hormonal medication. I have read somewhere that way back when, everybody with BC was given Tamoxifen. This was probably how they progressed with TNBC by questioning why Tamoxifen worked for some women with BC and not for others. In the past, women were probably diagnosed with breast cancer, given surgery and radiotherapy and then, later, chemotherapy, and then later drugs such as Tamoxifen, with little or no explanation.
I hope this information has helped a little. You will have to make the decision about whether to take hormonal treatment for the 3% ER. As Josephine said, she took Tamoxifen, just in case.
Hello Josephine.
Thank you for your post. I was very interested in what you had to say, especially about a new anti-body for BC, denusumab. Is it available or is it in trials?
I was very sorry to know that you are experiencing pain due to your bone mets, as pain is so wearing. I am keeping my fingers crossed that you will have good news on July 22nd.
Hello TEK2009.
I was so sorry to know that you are experiencing pain on the carboplatin and that the increased morphine took such a heavy toll on you. I was glad to know that you are feeling better after reducing the dose.
Thank you for your information about the hormone androgen. The more targeted therapies available for BC and other cancers, the better. This seems to be the way of the future. Keep questioning your consultant about what new drugs are available or in the pipeline and what trials there are.
We are all thinking of you TEK and sending our best wishes your way.
We are thinking of all of you who are having a particularly hard time with treatment.
All for now.
Sylvia.
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sorry mistake..TN diagnosis made by whoever does histology of biopsy, not the radiologist.
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Hi Tek and others on this thread
the opiate intolerance was not easy for me to detect, and was through a process of deduction; made easier because I was off chemo and the one thing I was fortunate never to have with chemo 1st or 2nd time round was nausea or vomiting. At 4.30am one night (as you do) I searched google to find these side effects. They are currently being dealt with by more anti emetic drugs, and by switching to slow release opiate (the syrup which gives immediate release causes the allergic response and more side effects). I did not get on with the morphine derivative I was given when I was in hospital at Xmas; it made me feel spaced out. The pallative consultant switchedmy pain killers to opiate derivatives. The trick is to be able to control pain and not get side effects. I was also rather keen not to get addicted to these (although I have only taken them over the last eight months when needed). My onc said with cancer patients this is not an issue. I guess we have more things to worry about. I agree with you though Tek on how we are encouraged to take these drugs. My husband is also rather keen and I think that I am a much nicer person when not in pain, as pain makes you crabby!! However, for all of you on this thread, it may be that in the future you will be on some sort of pain relief (and they are brilliant dugs removing both pain and anxiety) but chronic use should be monitored carefully. The problem we have is that we are on so many different drugs. Any one out there have a cure/treatment for siatica? I have pain down to my calf referred from trapped nerve I guess in spine. Not necessarily related to cancer though. Any suggestions welcome. I am buying a heated pad, which seemed to help when I was at the clinic (moving it around the leg and back). All for now
J
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Hello Maria_Malta
Thank you for your post. I can understand that you needed a bit of a break, as all the information can get a bit confusing. Like you, I tend to read some of the other threads and always have a look at the active topics, but do not often post as I find it confusing. I find it easier to keep to one thread.I can understand that you have a lot on your mind and that you have important decisions to make. With my own mastectomy I did not really have a decision to make. My consultant surgeon told me that I needed a mastectomy and I went along with her decision. Whatever the size of my tumour had been I would have wanted a mastectomy for my own peace of mind.
The good news for you is that you have put chemotherapy behind you. The rest of the treatment should be a lot easier. It looks as though your chemotherapy was very successful. After your surgery, if it follows the same pattern as mine, you will have a visit from the physiotherapist the next day to show you some exercises to do to try to avoid problems with your arm, such as lymphodema (swelling). I also had seven lymph nodes removed with surgery and only one was affected, the sentinel node. I was in hospital for five days, and allowed to come home once all the drains had been removed. I did have a bit of swelling in the arm, and did attend a lymphodema clinic for a couple of times. I was offered a sleeve, but refused to have it. I did my exercises, had a couple of extra physiotherapy sessions, and had no further problems.
I do not know what to say or advise about having the healthy breast removed as well. I think I could not have done that at the time of my own surgery, because I think I was in too much emotional upheaval at the time. With hindsight I think I might have had the healthy breast removed. It is hard to know what to do. Even without both breasts, you can still have recurrence on the scar lines or mets. I suppose you can probably have new primaries occurring elsewhere. This is the awful aspect of this disease. You do not know where cancer cells are in your body. I can only say go with what makes you feel comfortable. At least you have a good period of time to make up your mind.
If I were you, I would not worry too much about the percentages with the hormonal status. The most important information that we need at diagnosis is whether we are triple negative or hormonal and what our HER2 status is. Before the arrival of the anti-clonal antibody Herceptin I was told at the hospital that to be HER2+ was worse than to be HER2-. I think the most common diagnosis for breast cancer is ER+, PgR+ and HER2-.
You asked about follow up care after treatment. Here in the UK I had physical check ups every three months for about the first two years, alternating between seeing my oncologist and seeing my breast cancer consultant surgeon. After two years this went to every six months. I am still doing this and I shall see the consultant in October and the oncologist in April 2012. The check up is just a physical one on the site of the surgery, the healthy breast, under the arms, around the neck and often across the stomach. I am always asked how I am feeling and whether I feel there is anything not quite right. I have asked about all the scans and blood tests and have been told that these are done only if something looks wrong. Please remember this is treatment under the NHS. If you are having private treatment here in the UK, it is probably different. Since the end of treatment I have also been having two-yearly mammograms but I think that may go to every three years very soon.
I must admit that I sometimes wonder about these check ups and what could be going on in my body. I do have concerns about metastases. I ask myself how do you know what is going on in the early stages. We urgently need something to prevent these metastases. That would be the big breakthrough for breast cancer and other cancers.
Try to relax now and to keep fit and healthy in preparation for your surgery in October.
Sylvia.
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Hello Josephine
Thank you for your information about opiate intolerance. I am sure it will be of great help to anyone reading this thread who is dealing with the pain of metastatic breast cancer. I do remember my own brother dealing with disseminated adenoma cancer taking the opiate in syrup form. Pain is very wearing so if it can be controlled without horrible side effects, such as nausea and vomiting, that is so much better for the welfare of the patient. I can understand that you and TEK are being cautious about how much you take of these opiate drugs. It must be difficult trying to manage the pain and how often you take the pain relief. The medical establishment is very keen for everyone to take drugs. I remember, when I was in hospital for five days after mastectomy surgery, that the nurse came round quite often offering pain relief in the form of paracetamol. I think we were offered up to eight of them a day. I consistently refused them because I had no pain and I noticed that the nurse wrote down on my record that I had refused pain relief!TEK and Josephine, you are in my thoughts and I am sure in those of everyone else on this thread.
As for sciatica, Josephine, I understand from people I know with pain from the sciatic nerve, that it is really awful. Most of them seem to take ibuprofen, but there may be something stronger. According to information on the internet, sciatica is not a medical condition in itself, but is caused by something else. Heated or cold pads often relieve this kind of pain, but you have to know what kind of pain it is and where it is coming from before you know whether to use the hot or the cold.
I hope this is of some help.
Sylvia.
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Hello janjaker31
I hope all is going well with you and that you are not suffering too much from your chemo. It must be very difficult going through all this again. There are plenty of people here to support you, so please do not hesitate to post.
Sylvia
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Hello again Maria_Malta and others.
After I had finished posting I thought of a few other things that I should have mentioned. After your surgery in hospital, and before you go home, or, in my case, on the day I was getting ready to go home, you should have a visit from the breast care nurse to help you adjust to wearing your bra with a prosthesis or prostheses. A nurse came to see me with a supply of "softies". These are soft pads to put inside your bra and wear until there is enough healing to wear a proper lightweight prosthesis. In the UK these are usually made a company called Amoena. The NHS supplies the softies and the prosthesis free of charge. I wore the softies for quite a long time, as I could not adjust first of all to the prosthesis. After surgery, at some point, I had an appointment with my breast care nurse, who measured me up for the prosthesis. My understanding is that the prostheses are guaranteed for three years. When I felt that I needed a new one, I got in touch with the hospital and arranged to go to pick a new one up. I think if you want extra ones, you will probably have to buy them, as you do with the wigs supplied for hair loss during chemotherapy.As for the possible problems with the arm after surgery, I think it is a good idea to have at least one appointment with the lymphodema clinic, as the expert nurse there can show you, not only exercises, but how to do your own manual massage to keep the lymph moving. It is quite a soothing massage, but you have to know how to do the strokes in the right direction. I did this quite easily with my hand, but then bought a brush, made for this purpose, at the pharmacy, and I found this even more effective.
I hope this will be of help to you and others on the thread.
Sylvia
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Jan: We had a few threads going here on Metaplastic, but they have become rather quiet lately....we do have a great facebook page though, you should join us there, too. Metaplastic BC is a rare subtype, I was diagnosed in 2008. If you want to join us over at facebook, here is the link:
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Hello everyone
I was just wondering how many of you post on facebook. I and friends of mine had some problems on it and we all closed our accounts. I was persuaded to join by friends and relatives and did so rather reluctantly. I did not discuss anything of consequence on it. I was not happy to discover one day that facebook had got into my personal address book and had indiscriminately disclosed the names there and started sending invites to all my private contacts. I thought this was not acceptable.
I cannot say what the health threads are like on facebook and would like to know if any of you have opinions about it.
Sylvia.
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Hi Sylvia and all,
Thanks for all the info and suggestions..very useful...I think I'll only be kept in hospital here for a maximum of 2 nights, that is if there aren't any complications...Regarding follow-up care, although so far I'm being treated under our NHS, I do also have a private medical insurance which should cover any scans my onc might ask for me to have once I finish surgery and radiotherapy, ..the impression he gave me however, is that if there is no obvious reason, or indication, then he believes there isn't any point in doing these. I had a bone scan and a CT scan at the beginning of my treatment which were clear, and once all my treatments are over, he seems to think that apart from examining me on a regular basis I should just carry on with my life and only think about scans if there is reason to believe that there is something new...I must say this does make me feel somewhat insecure, but as my sister (she's a nursing tutor) said how does one decide how often to do this, every year? every two? all rather random I suppose.
I think suddenly having to face life on one's own, ie without treatment is a somewhat scary idea, especially as I think we feel we are somehow a bit more in control when we have a definite schedule to follow and a direction.. suddenly being set free from that must be quite disconcerting.
As I've just had my last chemo (yippee!), I'm not having to take the Nivestim shots (many take Neulasta) to stimulate white blood cells, so I should be able to see whether my side effects are less tough, although on Taxotere I seem to suffer mostly with exhaustion rather than aching bones...strange though that no one cycle was ever the same.
Since I have about 8 weeks to wait before my surgery my husband and I are going on a short holiday in the first week of September, to the Ligurian coast in Italy, going to a national park called the 'Cinque Terre', five villages on the sea, surrounded by high terraced fields growing vines with footpaths everywhere, and virtually no cars. Planning to get back some measure of fitness and intending to walk and swim as much as possible, in preparation for the onslaught of surgery.
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Hi to everyone. We did our Boobs n Balls cancer run to raise funds for our Solace care unit. Donegal to Waterford over three days on the motorbikes. Feel like i've been kicked by a mule but it was worth it. Last chemo next week. Hugs to all
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Hello Bernie_Ellen
I just wanted to say congratulations on completing the cancer run. I shall be thinking of you next week when you finish your chemotherapy. Since you have had your surgery I suppose you will be getting ready for radiotherapy. Keep well.Hello Maria_Malta and everyone.
I just wanted to give a bit more information about looking after you arm after surgery. It is important to avoid insect bites,scratches , sunburn etc as you can get infections. I was told to keep my arm covered if possible.
I hope you have a good holiday with your husband.
Sylvia.0 -
Hello everyone
I thought I would post a bit of information that I have just found about bisphosphonates. These drugs, as I have already said, are used to treat osteoporosis. Early trials seem to suggest that women with breast cancer who took bisphosphonates after surgery had a small but significant improvement in survival. I must admit I do not know how this works. My understanding of bisphosphonates in relation to osteoporosis is that they build up bone density. Are we to understand that bisphosphonates also prevent metastases to the bones? If this is the case, then I cannot understand why it is not being offered as standard practice. Have any of you in the UK been offered bisphosphonates as a way of preventing spread to the bones?
Apparently more recent trials with a new more potent drug, which goes by the name zoledronate, and which is given every few months as a fifteen minute infusion, have confirmed that this drug improves survival.
Results are awaited from further studies. If a benefit is confirmed, this drug will become standard treatment for certain groups of women.
Having found this information I can understand the post from bak94, which said that a certain surgery in the US had been giving bisphosphonates (zoledronic acid or zoledronate) to breast cancer patients for ten years. I wonder whether they were given the mentioned infusions or whether they were given oral bisphosphonates. These are not easy to take, as they can cause heartburn.
I do not know if this has been happening in the UK.
I have again read somewhere about the diabetes drug, metformin, being used for breast cancer and being quoted as being good for TNBC. Are any of you being prescribed this or know anything about it?
All for now.
Sylvia.
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Hello Sylvia
Hope you don't mind me 'butting in' as I am not TN, but I thought I would relay my efforts to get Zometa (zolendronic acid).
Originally, the research was done with PREmenopausal women, who took an aromatase inhibitor (having had their ovaries either removed or 'zapped' to make them menopausal) and then were given twice -yearly infusions of Zometa.This combo showed some effectiveness in preventing progression to mets in the bone. Subsequently, the combination was also investigated with postmenopausal women, but did not show such a great advantage.
I was interested in getting Zometa, even though I had not had a great experience with Fosamax, but neither my oncologist, nor my endocrinologist would prescribe it.The endo actually asked me why would I want to be treated with such a 'filthy drug', when it had quite serious potential long-term side effects? They both concurred that the place for zometa was in treating bone mets.I was quite disappointed as this had been my plan, but after researching the potential side effects of Zometa, I am more resigned to doing without.
Hope this information is of some use.
Sam
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Hello Sam
Thank you for your post. Of course I do not mind your posting here. Everybody is welcome, as the more information we have the better and whether we are TNBC or not, most of the treatment is the same. I know that you are very well informed. As someone, ten years away from diagnosis, you are an encouragement to all of us.
I was interested to know that originally the research had been done with pre-menopausal women, who had been made menopausal, put on aromatase inhibitors, and then given twice yearly infusions of Zometa (zoledronic acid, zolendronate). Thank you for making clear that it was this combination that showed some effectiveness in preventing progression to mets in the bone. I am assuming that this meant there was another group of women who were getting just the aromatase inhibitor and that they progressed to bone mets.
I cannot see why this drug, which had apparently shown some effectiveness in preventing bone mets in younger women made menopausal and on aromatase inhibitors, could not be offered to menopausal older women on aromatase inhibitors. This seems to be discriminatory.
What your endocrinologist said about the drug backs up what my medical team said about bisphosphonates in general. I have heard nothing bad things about bisphosphonates. The one that is in general use for the treatment of osteoporosis appears to be alendronic acid (brand name Fosamax). This is taken orally once a week and causes all kinds of side effects. People that I know who are taking it hate it.
Does anyone know the difference between these two bisphosphonates? One is alendronic acid and the other is zoledronic acid. That is Fosamax and Zometa. Why would one be used for just osteoporosis and the other as a possible prevention for mets to the bone?
Hope all is well with you, Sam.
Sylvia
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Hello everyone
I was just thinking that if Zometa has proved effective only in young women with induced menopause and on aromatase inhibitors, which means they were diagnosed with hormonal breast cancer, it probably means that Zometa might not be of any use for preventing bone mets in TNBC. We need to know if there have been any trials with this drug for women with TNBC. We also need to know whether at the mentioned surgery in the US who exactly was getting Zometa.
What I do think is important is that all of us going through treatment for BC, of whatever kind, should have a DEXA scan to see if we have developed osteoporosis because of our treatment. Even better would be to have a DEXA scan before treatment to see whether we have osteoporosis as an existing condition before treatment, as the treatment could possibly make it worse.
All for today.Sylvia
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I am so confused about zometa. I am premenopausal and will have my ovaries out because of my brca 1 positive status, so maybe zometa will benefit me. My doctor seems convinced that I should take it, and he really does keep up with all the studies and goes to many of the conferences, so I do trust him. Some of the serious side effects scare me and I wonder how he is going to get around the insurance issues, as it has not been approved for prevention in the US.
As far as metformin, my doc is one of the doctors doing a trial and said it is still investigational and did not recommend it for me just yet. It seems zometa is still pretty investigational also with more side effects, so I don't know why he will support one but not the other. He seems to have had good results within his office with zometa and prescribes it alot, but has not done complete studies. Maybe I should ask him about numbers and stats of those who have taken zometa.
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Bernie Ellen, well done for the run and GOOD LUCK for your last chemo...had my last one on Friday... tired but so relieved!!!!0
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Hello bak94
I can understand your confusion about Zometa (zoledronic acid). You seem to fit into the category of women that sam52 mentioned in her post, in that you will have induced menopause by having your ovaries removed because of your BRCA1 status. I assume that your doctor will be giving you an aromatase inhibitor (Arimidex), together with the Zometa, as this was the combination that was used in trials. It is good that you feel that you can trust your doctor. It might be prudent to have a good discussion with him about the side effects. I cannot comment on the insurance issues with regard to drugs that have not been approved for a specific use, in this case Zometa as a prevention for mets to the bone. All you can do is get every piece of information you can.
We all wish you luck with whatever you decide to do.
I was interested in what you said about your doctor's comment on metformin. I wonder what kind of breast cancer this is being investigated for.
I have been looking up bisphosphonates on the internet and found a list of all the bisphosphonate drugs, how they work and what they can do to you. I have posted it here, as I thought it would be good to have a list of these drugs in our minds. For zoledronic acid it has two brand names, Zometa and Aclasta. For Zometa, it says that it is prescribed mostly to cancer patients and it is used to treat abnormally high levels of calcium in the blood. High levels of calcium in the blood can indicate metastases to the bones, but not always, as my own case shows. I had high levels of calcium in the blood, on diagnosis, and it was thought that I might have metastases to the bones, but it turned out that this high level of calcium was caused by an over active parathyroid gland, which was cured through surgery.
Aclasta apparently is a more all-purpose form of Zometa, and is administered through an injection into a vein or through IV.
http://www.weitzlux.com/bisphosphonates-list_1962560.html
That is all for today.
Sylvia0 -
Thank you for the information Sylvia. I do seem to fit into the group that may benefit from Zometa. I looked up the side effects and they do worry me a bit but they will keep a close eye on me. I had my first Zometa today, so far so good, I will keep you posted. It seems chemo can cause bone loss by knocking out the ovaries, and I am having them removed as you know anyways. So it is important to keep my bones strong, my nurse said that helps prevent the cancer from getting in there and attacking the bones. She did not mention it preventing other distant mets as some of the earlier studies suggested. My thoughts are still out on the ai's and tomaxifen. Definitely waiting for my final pathology after my bmx to make any decisions about that. The 3% could have been from just regular breast tissue so it needs to be rechecked before I make any decesions on that.
I am bummed about the parps because they seem to work for brca positive women, so why can't it be available? Do you think that will change? I was hoping to do a parp after my surgery and rads, but if all the trial are closed now that puts that idea out. My doc is not to thrilled with the results of the parps, but I will have to go over that with him again, pointing out the brca thing tomake sure he takes that into consideration if it ever becomes available again.
I can't sleep! It is 3 am here in Seattle. I only had 10 mg of decadron with my treatment today. My mind is going a million miles a minute! Maybe it is a se from Zometa? I feel good though!
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Oh, I don't have high blood calcium. It sounds like one does not want to take zometa for more than 3-4 years. I think my doc did mention taking it for 3 years. I will ask again. I really need to record or take notes. We bounce from subject to subject with info flying in all directions!
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Hello bak94
Thank you for your post. I do hope that the Abraxane you are taking and the Avastin that you will be starting soon will prove successful for you. You do have to have quite a lot of Abraxane, twelve sessions, so I hope everything will run smoothly. How often are you having them? It is good news that the ac worked well for you, even though it was the second time round. I have no idea where the truth lies about whether it is alright to have the same chemotherapy treatment second time round. You hear conflicting stories, but it seems to have worked for you.
I think you are right in deciding that you are stage 3. Everything that I have read and been told is that you are stage 4 when you have distant metastases, that is to the brain, bones, liver or lungs.
I hope everything will go well with the Zometa. I was glad to know that you had had your first dose and that all is well. Please keep us posted about your progress. I do agree that it is important to keep bones strong during all chemotherapy treatment.
You have a long journey ahead with surgery and radiotherapy after the chemotherapy treatment. I do hope you are managing to keep in good spirits and to keep looking ahead with optimism. It must be so difficult having to go through all this again.
I cannot understand why more progress is not being made more quickly with the PARP inhibitors. Trials seem to be long and slow. My information from this country is that PARPs are currently undergoing clinical trials but show great promise in patients with breast cancer who are BRCA1 or BRCA2, and also in patients who are triple negative. Do you know anyone who is getting PARP inhibitors in your neck of the woods or are they at the trial only stage?
I think we all have to remain optimistic in our journey with breast cancer and remember that in most major breast units research into finding better ways of treating breast cancer is going on all the time. At the moment there is no current treatment that results in a cure for all patients, so doctors in these units are continually looking for new ways to treat breast cancer. This is done mainly through clinical trials. I suppose that if all other treatment becomes exhausted you have to find a way of getting on a trial.
We are all thinking of you here and wishing you the best. Did you happen to read the post on Tns from flautalee, whose cancer has come back after eleven years? It makes me realise that, although we try to live normally after treatment, there seems to be no guarantees and no permanent peace of mind.
Sylvia.
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Hello everyone.
This thread has gone very quiet and there are no postings from any newly-diagnosed patients. I hope this means that there are no new patients, or that, if there are, they are coping and would seem not to need the support of this thread. Since I regularly read the other TNs thread there seems to be a lot of new cases in the US. I cannot quite make up my mind what is happening.
I hope everything is going well for TEK and Josephine and I hope that Josephine gets good news tomorrow from her CT and bone scan. I hope that Maria_Malta and BernieEllen are enjoying some relaxation after finishing their chemotherapy treatment. We have not heard from Karen3 in a while, but hope that all is OK and that she is enjoying her school holidays.
We all hope that everything is well with the American women who regularly post here, gillyone, suze35, who is having a challenging time, christina1961, and mccrimmon324. We would love to know how all of you are. To suelynn, we hope your mother is making good progress.
I hope you are all enjoying what is left of summer.
Sylvia.
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Hello everyone!
Sylvia,
I have been back to work since my mastectomy and even working on the weekends! Yesterday I did my first volunteer dog transport since my treatment began February 28 2011. I am on an email list for dog and cat transports. The animals generally come from high kill animal shelters in the southeast US, are quarantined for two weeks and given their shots by a pulling rescue, then travel to the northeast or midwest to a receiving rescue or a screened adopter. There is a transport coordinator involved who sets up the chain of volunteers and we each drive about 100 miles from stop to stop with the animal(s). It is a very rewarding experience and I have really missed it. Yesterday's companion was a golden shepherd mix with black muzzle and eyebrows. She was very sweet and friendly. She stayed in the back of my car for the most part, looking out the windows. Everyone on the journey shares photos and videos and it was amazing to see the latter videos where she was responding with so much returned love after a day in which she met almost a dozen different drivers, each of whom gave her positive attention. I was only her second driver and she was much more subdued. It felt very good to get back to my normal life.
The second opinion oncologist I saw still gives me a 50% chance of recurrence with the Arimidex, so I am seriously considering participating in a clinical trial to possibly reduce those odds. There is a study within 200 miles of me that uses CMF chemotherapy at a reduced metronomic dose with Avastin. The study involves the chemo for six months and treatment with Avastin goes on for 2 years. CMF is really what I want for more chemo. There has been reference on another TNBC board about an Italian study which shows benefit from adjuvant CMF chemotherapy following neoadjuvant anthracycline based chemo with partial response. I have read this particular study referenced, but cannot find it anywhere. There is a study local to me using Halevin or Havelin (I always mix it up) - it is erubilin I believe - for the same purpose of enhancing outcome after partial response to initial chemo.
Josephine, I hope your results are good tomorrow.
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Hello Slyvia, I'm still lurking about. In between my 4th and 5th treatment. Think I'm just wanting to get Chemo over with. I'm tired of being bald, tired of feeling sick, this terrible taste in my mouth etc... Guess I'm feeling sorry for myself lately. I'll snap out of it this week, I'm sure. I think you mentioned something about Flutalee on another TN thread that her cancer had come back but I believe she's posted that it is a new primary and not related to previous diagnosis.
Hope everyone is doing well.
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Hello Christina1961
Thank you for your very interesting post. I was so glad to know that you have bounced back from your mastectomy and getting into your normal routine. Being back at work will help to take your mind off things. I was very impressed with what you are doing as a volunteer with animal rescue. I can tell by the way you have written that you love this work. It must be very fulfilling.How are you getting on with the aromatase inhibitor Arimidex? Are you suffering from any side effects? I was puzzled that your second opinion oncologist has said that you have a 50% chance of recurrence, even with the Arimidex. I did not think that oncologists gave patients percentages of risk of recurrence. I thought that when diagnosed with primary breast cancer, a patient went through treatment with a neo-adjuvant chemotherapy, surgery, radiotherapy and then on to hormonal treatment if the tumour was hormonal dependent. The chemotherapy often takes place after surgery and before radiotherapy. Am I correct in thinking that you are not going to have radiotherapy? It is usual to have this to mop up any remaining cancer cells, or are you taking the Arimidex while you are waiting to have the radiotherapy?
I do not know how old you are but aromatase inhibitors such as anastrazole (Arimidex), exemestane (Aromasin) and letrozole (Femara) are usually given to post-menopausal women. These drugs act by inhibiting the action of aromatase, an enzyme that promotes the conversion of testosterone to oestradiol. They reduce oestrogen levels which can be helpful in the control of oestrogen-dependent tumours. Because of their role in reducing oestrogen, those taking them will get symptoms of oestrogen deficiency, such as the hot-flushes associated with menopause, as well as nausea, vomiting and headache. I know that these drugs can cause osteoporosis.
I was interested to know that you are thinking of perhaps taking part in a study using CMF chemotherapy at a reduced dose, with Avastin. Have you spoken with your oncologist about more chemotherapy?
I have never heard of the drug Halaven which goes by the chemical name eribulin. I have just Googled it and there is quite a lot of information about it with reference to breast cancer. I do not know whether it is being used in the UK. We always seem to be behind the US. The reference I found is: http://breast-cancer.emedtv.com/breast-cancer/halaven-chemotherapy-information.html.
There are so many different drugs around now that it can get very confusing.
All the best and keep up the good work.
Sylvia.
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Hello mccrimmon324.
Thank you for posting. Your chemotherapy treatment will soon be over and you will feel the relief that we all feel when we finish this most difficult part of our treatment. I can understand that you are fed up with feeling bald. This is perhaps the most distressing side effect of chemotherapy treatment. I know it upset me more than anything else. I found that my hair grew back pretty quickly once the chemotherapy stopped. I can understand that you are fed up with feeling sick and having a bad taste in your mouth, but it will soon all be over. I think we all go through periods of feeling sorry for ourselves, but we do get over this and have periods of feeling normal, even when going through treatment.You are right about Flautalee on another TN thread. When I said that her cancer had come back, I did not mean to mislead. I read her post very carefully and knew that it was a new primary after eleven years. I did not mean that it had come back in the sense of recurrence. I thought her post would be of particular interest to bak94, who also had a new primary diagnosed this year after being in the clear for eight years.
Keep looking forward.
Sylvia
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Sylvia,
Thank you! I really do enjoy helping animals - I have found it extremely rewarding. For years I felt building my small business was the most important thing but in the end even though I have pride in my work, it was not very emotionally rewarding. I wanted to feel like I was really helping.
I am not comfortable with the 50% risk of recurrence - I was much happier with the 25% risk and cannot understand how two oncologists can have such a dramatic difference of opinion. I left a message for my oncologist last week and am waiting for his return call to discuss both trials. I am taking Arimidex and will continue no matter what trial I go into to. I go for my radiotherapy staging tomorrow and should start about a week later. The trial with erubulin can apparently run concurrent to the radiotherapy but the other trial begins following radiation. I am 50 and had very regular periods prior to chemotherapy but my periods did not return so that is why I am on Arimidex rather than Tamoxifen. I've had some joint pains and hot flashes but the hot flashes seem to already eased. I have had hot flashes for about two years anyway, and was very determined not to touch hormone replacement therapy as my sister developed extremely estrogen dependent breast cancer following 17 years of HRT. My hot flashes don't really bother me. Luckily, I have not had nausea from the Arimidex because I had horrible nausea with Adriamycin. Moving about seems to really help the side effects of the Arimidex. I have forced myself to start back on a walking program even though my knees and feet hurt. After a couple of weeks, it seems to be getting better and is limited to when I first get up after sitting for prolonged periods of time. If it reduces my chance of recurrence at all I am all for it!
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Christina, that is really cool what u do for the dogs! I am an animal lover too! I have 4 dogs, 3 of which were from a pet shelter, 2 cats, mamma kitty was a rescue and was already pregnant:( I found homes for all the kittens and kept one, 5 goats, 4 of which were rescued from an empty house (they had no food or water and were very skinny), 5 parrots, 3 of which people did not want anymore and 16 chickens. Well, ok, the chickens weren't rescued, they provide us with eggs that I share with neighbors and friends. My house is very comical! Watching all the animals interact! My dogs don't even bother the chickens much! The cats stalk the chickens, but they don't attack. I don't have children of the human variety, so I think I substituted with animals! I have to borrow my great niece and nephew because i love children too! They have a great time with all the animals.
Sylvia, as always you have provided much info! Just know that you are much appreciated! My abraxane treatments are going very smoothly so far, and I had absolutely no se from the zometa. The chemo nurses are great! They did a slow infusion to help limit side effects. They also wonder why abraxane isn't the standard treatment instead of taxol, but agree that it is mostly an insurance thing because abraxane is much more expensive. I hope it is working! I will have a scan after 6 treatments. My treatments are weekly. If there is shrinkage I will finish up with 6 more treatments and then off to surgery.
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