Calling all triple negative breast cancer patients in the UK
Comments
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Hello Flora,
I was wondering how everything is going with you and your mum. I do hope that you and your family had a good four days in Wales and that you feel better for the break.
I do hope all went well with your Skype consultation with Dr Elizabeth Thompson.
Sending you best wishes.
Love.
Sylvia xxxx
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Hello, Sylvia
I feel that I've been very lucky with chemotherapy, having maintained a more-or-less normal life throughout. The Taxane has been harder than the first three cycles but still perfectly manageable. I know that many women find the treatment a nightmare so am grateful that it hasn't been for me.
It's gone by more quickly than I imagined, but then when I knew I was going to be having almost four months of chemo, I envisaged four months of me prostrate with exhaustion and vomiting!
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HI, Sylvia
I did have a look at the articles you posted. Very interesting to see the prices, and I can't offer any help there, I'm afraid. The insurance I had at that time was considered very good, and I never saw a bill except for my first visit. That was $260, and I think once I committed to the treatment it was reimbursed. Your prices may be in line, I can't say for sure: our prices are much inflated, but then the final amount the doctor finally gets is always less than he/she initially asked for. Now I have Medicare, so I do get a report on things each month.
As for the treatment itself, you are right, it is a lot of visits. They will start with the consultation, then an ultrasound before anything else. My ultrasound was performed by a technician, not a doctor. But then studied by the doctor. Then another consultation for results of that, and then you decide whether to proceed. If you proceed, I can tell you what I had. I had the laser to remove (dry up) the great saphenous veins, which are the veins that supply the varicose veins. If they are not removed the varicosities will quickly return. I had one thigh treated, and then the other thigh.. After the saphenous veins were removed I had injections over many visits, and again part of my leg each time. After each treatment I would have to wear support hose ($100) for about a week. At this point I was diagnosed with TNBC and everything came to a halt. About 2 years after chemotherapy ended I went back to have the calves of my legs finished, once again I had to have an ultrasound since too much time had passed since I was there. I had the right lower leg done, once again I had injections but the treatment had changed. Since I had already had the saphenous veins done, I moved right to the injections. Instead of having several small injections in right lower leg, I had 2 large ones at the same time, one a little above the mid-calf, and one above the ankle. The ankle site was very painful afterwards and was so for about a year, and has affected the ankle area since with a very slight swelling at the injection site. I have not been back to that doctor, when I complained about the pain later he was very dismissive. I questioned the larger doses, he said that was the new protocol. But he was quite rude and impatient. So I told myself to forget about the other lower leg, and I had until the nurse I liked called and said she was working for a different doc, and I was welcome to come in and have the other lower leg checked out and check out the whole area at the same time. Haven't been there yet, that comes up in later August. And yes, they have scheduled another ultrasound before the consultation; they run it from the lower pelvis to the ankle on both leg.
The first doc did tell me that varicose veins will usually come back no matter what you do; and I do have some new visible varicosities. The ultrasound I am going to have before my consult will tell what is going on underneath. I notice that Dr. Whiteley says that if the procedure is done properly, by the proper surgeon, it is a permanent fix. I was not told that it was permanent, but that it would have to be watched and re-treated over the years. I was also urged to wear the support hose at all times, but that I cannot do. I wore them when I was supposed to after treatment, but there is no way I could wear them all day every day.
So, in synopsis, as far as the price, it does sound expensive but it also sounds like an impressive place, and doctor. I can't really compare price since I don't know how much my treatment cost. The treatment regimen of Dr. Whiteley is all certainly spelled out for the patient, with every step explained. It sounds like the place to be if one wants to get into doing this treatment. Are you considering it?
I have had a busy week, but then ever since I've been back from Europe it's been very hectic, it seems. Our cool spell is over for now, and our hot dry weather is back, I'm sorry to say.
I will talk to you again soon, love, Mary
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Sylvia,
I think I missed a couple of questions from you. You asked whether I considered what I had to be the minimalist treatment. I don't think so, the minimalist treatment would be just injections in the veins without the laser treatments on the great saphenous veins, from what I was told. I don't know if the vein stripping is still done, that sounded awful.
Yes, you are right, nothing is really done to the valves as far as I know, so perhaps that is why it is not permanent. Although Dr. Whiteley seems to say that if treatment is done properly it is permanent. A lot of questions, I will try to get some answers.
Mary
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Hi, Ellen
I am so sorry your mother and you find yourselves in this situation. I would say that usually with a TNBC diagnosis chemotherapy is part of the treatment, but I'm sure the docs will work with you and your mother to choose the best path. Chemo may not be the best path for her, it can be rigorous. But if you read much on this thread and others, you will find that many people go through chemo with few side effects, it's very individual.
I hope all the scans come back negative, and things go well for your mother. Come back here and tell us about it, someone is always here!
Mary
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Hi, Pam
Thanks for thinking of me, and for reminding me of ELO. After reading your post I went on youtube and found a list of songs and played some of them, good stuff! They were inducted into Rock n' Roll Hall of Fame in 2017, I try to watch that every year. This year's Hall of Fame ceremony included the induction of the Moody Blues, another of my favorite bands that incorporates symphony music into their songs. I still love their albums, every one is a story, one song leading into the next. I'll keep my eyes and ears open for the Wembley ELO concert.
Talk soon, love, Mary
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Hi, Monica
I am so sorry that the fires have exploded across your state, things do sound very bad, I hear several firefighters have lost their lives and there is much property damage. I heard an "expert" say some time ago that California has the kind of climate that is amenable to wildfire, and one of the problems now is that so many people move into the areas that are prone to fire because the weather is so wonderful there on the whole. I have read that some of the fires have been started by arson or careless campers, another was caused by a car stalled on a road, and some are lightning-ignited. It sounds as if the air quality is very affected by all this, the fires must be horrendous to send the smoke for that distance. I hope your state gets some very big rainfall soon.
The water exercise sounds good, I am going to check that out later this fall. I hope I can find a place to go and do that.
Take care, Monica, I hope your radiation treatments breeze by, I would think the aloe vera gel would be very good. I know it helps with sunburn.
Talk to you soon, love,
Mary
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Hi, Hanieh
It's always good to hear from you, and you look as beautiful and radiant as ever.
Congratulations on your test scores, I knew you would do well, your English is very good. You are the top of the class, hurrah!
I don't blame you for wanting to leave your home country, Iran seems to me like a very restrictive place, and the leaders do not seem to have the interests of the people at heart, to say the least. Canada is a big, beautiful country, which part are you thinking of going to first?
You have not commented on BC, so I am assuming all is good on that front, and you are so busy with your new pursuits that it is out of your mind. I admire you for taking up French, I admire anyone who speaks more than one language fluently.
You are still in my candle-lighting each Sunday, I light one candle for you and Marias, and one for all the rest of us. We have had some turmoil in our small church, the church hierarchy has decided our church would be downgraded to a chapel and be almost closed, with no Sunday service, there was a big to-do over that and now they are in meetings with members of the parish to perhaps work out a compromise. This is blamed on a shortage of priests to take care of all the parishes, but I am one of the people that doesn't want to be blended into a larger group and lose our identity completely. It has caused many bitter feelings.
So keep in touch, Hanieh little sister, and I wish you the best of luck with all the things you are pursuing now.
Talk to you soon, love, Mary
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Hello Monica,
I am just popping in to say that I am thinking of you and wanted to send my best wishes as you go through radiotherapy. Please let us know how you get on and give any tips to help others get through it.
Love,
Sylvia.
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Hello helenelouise and Ellen,
I was wondering how you were both getting on.
Love,
Sylvia.
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Hello Mary,
Thank you for your latest post. Thank you so much for that very detailed account of the treatment that you had for your vein problems. I worked out from reading all the details about Professor Mark Whiteley, and the way he treats venous reflux, that the minimally invasive surgery will require repeated visits. I shall not be following up this treatment because it will be horrendously expensive and require long drives to one of his clinics. As I said before, I have been told the NHS does not treat any problems with varicose veins unless venous ulcers develop. I shall try to take care of my stained areas with moisturising and hope for the best. I am not surprised the NHS does not do this treatment as I think it would go bust with the cost.
Thinking carefully about it all, I cannot see how this treatment can cure everything because the problem is with the valves in the veins that do not close and thus send blood down to the ankles instead of sending the blood up to the heart.
I shall be very interested to see what goes on with you when you return to the clinic.
It looks as though insurance based health care has some merits, provided you can afford to pay the premiums. With the NHS which was a wonderful system when first introduced in 1948 with the idea of treatment free at the source, but paid for largely by taxation. Today it cannot really cope. There is too much demand, not enough funding and perhaps quite a lot of abuse all round. All the procedures have become very complicated and/or expensive. I have nothing but praise and admiration for the front line staff, but there is a lot of bureaucratic waste. I had excellent treatment for my breast cancer treatment and have no complaints at all.
I do not think the venous reflux treatment is a cure, not if the valves are still not working.
It is a good thing that the powers that be have got rid of the stripping of veins treatment. That treatment sounds truly horrendous.
I do understand what you mean by a busy week. I seem to wake up each morning and write out a long list of things to do. I rarely get to the end of that list. I have books and magazines to read, but cannot seem to get to them.
Like your weather, our heatwave is back and I am dreading it. We have not had enough rain to sort out the grounds here.
I am now looking at your second post.
You are right about the treatment. It is probably injections but what is being injected into those different parts? What sort of chemicals?
Like you, I was so glad to see our Hanieh back on the thread. I do hope she will be successful in her quest to go to Canada. I think if I were her I would try to go to Ottawa, Ontario, if she can stand the cold. If not, Vancouver, British Columbia, is very pleasant and might not be so cold. I would steer clear of Toronto,Ontario and Montreal, Quebec, because they are too big and might be overwhelming. I am sure Hanieh will stay with us and let us know what happens.
She did not mention anything about the genetic test results, but I think she is still waiting for them.
I do hope Marias and Gina will be able to get access to broadband and let us know how things are going with them.
I do hope we shall soon hear from adagio, 53Nancy, CocoonCat, Jags and Sid. We have not heard from them in a long time now. I hope helenlouise and Ellen will stay with us.
Do you ever look at the forum Moving beyond cancer on here? It can be realxing. I have been looking at the thread Gardening anyone? in this forum. There are some beautiful photographs to look at. I have also been looking at the thread Booklovers' club in the same forum. I found it interesting but did not know many of the books. It is not about books on cancer, but a way of escaping cancer. You might enjoy it. The books I have to try to find time to read are all non-fiction.
I thought about you the other day when I was in a bookshop and just happened to see a paperback about the king of Scotland who never was. I did not look carefully enough so do not know whether it was non-fiction or historical. I know you like books on the past monarchies of the UK.
That is about all for now. Take care and have some relaxation time.
Love.
Sylvia xxxx
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Dear gang!
Thank you to all for asking about me and how we've been getting on. I so appreciate your thoughts.
Hello to Ellen...we are in a similar situation. I am on here on behalf of my mother, who is 73 and was recently diagnosed with triple negative breast cancer, so I understand some of what you're going through. You will probably still be in shock - I know I was for about 3 weeks following the news. I found it very hard to function then, but now, 6 weeks or so so on, we both feel a bit more purposeful.
My mother's tumour turned out to be smaller than originally thought and hadn't spread the lymph nodes, though we are still under no illusion that this is an aggressive cancer, given to returning and spreading (but that doesn't mean it definitely will of course).
I guess you are at the stage where you are still finding out about what you're dealing with-presumably waiting for results of CT scans etc. I do hope of course that your mother's cancer is still at the primary stage. If not, don't despair as my understanding is that there are still treatment options.
RE: chemo in older women. Well, this has been a big issue we've had to deal with. In our initial consultation, my mother was advised to have no treatment since "she was over 70 and breast cancer treatment is one of the more aggressive types". I was not happy with this: having done a lot of research, my understanding is that chemo and radiotherapy are all that doctors really have for this breast cancer subtype and that almost everyone seems to have it, unless there's a very good reason not to.
We sought second and third opinions and they both said that, since my mother is relatively fit and well, she should definitely consider chemo. They also said that, even if she couldn't tolerate it very well and had to stop, any little bit she did manage would be of benefit in reducing the chance of the cancer returning. I wonder if that's something you could ask about with your mum? Could the doctors "try it out" on her, with the view that they would stop if was clear she could not tolerate it.
I know nothing about the different chemo regimes and how differently aggressive they all are, but , looking into the chemo room at our hospital appointment yesterday, there must have been women of 80, 85, even 90 having it. And my friend's mum, who's 85, is currently having chemo for a rare stomach cancer and lymphoma. She is very fit for her age.
I hope this might be helpful. Whether it is or not, I really wanted to say that I feel for you-and really do "get" your situation. My father, though still alive, has advanced dementia and is really in a very bad way (he does not live with my mother but is cared for at home by his new(or newer) partner) and I feel as though I only really have one active parent. Now I face the possibility of not having even that, and it is a scary thought.
Do you have children? I have four, and am very grateful for them at times like these.
I hope you have lots of support around you to help make these hard, hard times a little bit easier. I do find this forum really helpful-the support may be "virtual" but everyone here seems so warm and supportive and just "gets it". Anyway, I wish you all the best, Ellen.
I will report back on our consolation with Dr Thompson soon, Sylvia. It was very interesting.
Susie-wow, you are finishing chemo really soon. That is brilliant! And I'm so pleased you have been able to live a fairly normal life through it. Although I do understand that being cast adrift from the chemo and active treatment can be hard in some ways, I guess it must be good to have got to the end of a hugely daunting procedure, and I hope you've got some really lovely things set up for when you've finished. Swimming will clearly be one of them!
I'll check in again very soon
love to all
Flora x
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Hi Fiona
Thanks for the update. Your mum is so lucky to have you. My mother's final years were spent in care and nursing homes with Alzheimer's. I'm more afraid of that than I am of cancer.
Yes, final chemo next Friday. I shall be having three weeks radiotherapy in September or October and that will be that. It's been an interesting few months! Having never had a day's serious illness in my life I always thought I would be terrible at being properly ill, but it turns out I'm not.
Went into Charing Cross this morning to get my PICC line flushed and thought I saw Sheila Hancock in the foyer. It's 30 years since she had breast cancer. She's still working in her 80s and an inspiration to us all!
Susie
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Hi Sylvia and all,
I had BMX with level 2 lymph node dissection on the affected side (left) on 23/07, spent 5 days in hospital and home. Both drains removed whilst I was in, thankfully, as I didn't want to deal with those at home.
Must say I was quite distressed leading up to the operation. Having the best part of 20 weeks (whilst doing chemo) to think about my decision was not good for me. So my initial reaction to the op was: thank goodness it is finally done! I was very relieved.
My recovery so far has been good. The past few days I note the numbness on my left side is giving way to soreness. Whilst it's not great to be sore I would rather that than no sensation. The incisions are even and healing well. I was surprised the surgeon has not used stitches but glue and steri strips. I have no plans for reconstruction at this time.
Looking forward to having the dressings removed on 07/08. That is when I will also get the pathology. I am not concerned about the results as I can't see my treatment plan changing; once healed radiation to the axillia and clavical. Having completed radiation in 2013 I am not stressed about having to have it again.
Would love to hear from anyone who has had or is going to have mastectomy.
I hope that each of you are doing well wherever you are in your journey. Thank you Sylvia for being so inclusive, informative and thoughtful.
Best wishes - Helen
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Dear Sylvia,
Thank you for thinking of me. Radiation treatment is going good so far. 4 down, 11 to go. I am not feeling any side effects yet. I am reading that I may feel fatigue and have skin issues in the weeks FOLLOWING treatment, so we will see. The doctor and nurses at the center I’m at say every patient is different as far as side effects go.
The treatment itself is very simple. Even though I have to go every day (Monday-Friday) for three weeks, from the time I park my car to the time I return to my car, is no more than 15-20 minutes. The hardest part is the 45 minute drive each way to the center.
Besides applying aloe Vera and calendula cream to my breast several times a day, I have continued to drink lots of water. I got into that habit during Chemotherapy and think it can only help to keep my breast skin hydrated. So I carry around a liter bottle of water and refill it 3+ times a day.
I hope all is well with you and you are feeling better in this heat.
Monic
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Hi everyone,
Thanks for your supportive messages. We saw the oncologist yesterday and she has a bone scan today. Mum is stage 3 at the moment pending bone scan results. The CT scan was clear at this time. She has a 50% chance of the cancer coming back with just radiotherapy and a 37% chance of it coming back with the chemotherapy treatment. She is refusing to have chemo - she says there are days when she doesn't feel well as it is let alone having to go through all that treatment on top. I am going to have to respect her wishes and to be honest I can completely understand why she has made this decision. The oncologist said it mums choice - they recommend chemo but she does not have to have it if she doesn't want to.I am scared but think I will just have to make the most of her whilst she is here. We are just now waiting for the treatment dates to come through - they have also put her on a bone tablet.
Will keep you posted and best wishes to you all. Ellen. xx
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Hello Flora,
Thank you for your latest post.
I was glad to see that you had introduced yourself to Ellen, given that you are both here for your mothers.
This conversation about more elderly patients and whether or not to have chemotherapy is very interesting. I think whether to have it ultimately must be the decision of the patient. I think a lot depends on the state of health of the patient and whether they have chronic illnesses and whether they are on regular medication for these illnesses. Whether we find chemotherapy treatment relatively without problems is very personal. I think that the first thing is to recover from the shock of a diagnosis of breast cancer and both the patient and family and friends will be in shock.
Chemotherapy is a long and quite difficult journey.
I had six months of treatment and had it before surgery. I did not feel ill and carried on as normal, but of course I had retired from work. I just felt tired and rested if I needed it. As for the chemotherapy drugs used, and how they affect us, is very individual. I had EC (epirubicin and cyclophosphomide) and had no problems, except for the hair loss and that can now be avoided or attempted to be avoided by the ice cap. For the last three months of my treatment I had T, which was docetaxel. Again no major problems but I did lose my eyebrows and eyelashes and developed a metallic taste in my mouth.
It does seem that patients are having more problems with the taxanes (either docetaxel or paclitaxel).
We should be under no illusion that chemotherapy drugs are toxic and there are long term side effects.
I would think the older you are the less able your immune system might have trouble fighting everything.
We know that chemotherapy drugs can affect the heart, and that the taxanes can cause lymphoedema, as well as peripheral neuropathy in the hands and feet.
I have someone that I know here who was diagnosed with hormonal breast cancer at 92 in July this year and has had surgery, does not want chemotherapy but will have radiotherapy. She is amazing for her age but it remains to be seen how the cancer will now affect her.
I shall look forward to hearing from you about your consultation with Dr. Thompson.
Let us know what your mother gets as her chemotherapy regime.
I was looking through the different forums recently and came upon a post where somebody was talking about a more gentle chemotherapy regime and it was a combination of methotrexate, cyclophosphomide and fluorouracil. Cyclophosphomide always seems to figure and the others are used from time to time but I am not sure why. It could be that they do not have the same toxicity as epirubicin, doxorubicin, paclitaxel and docetaxel.
Keep looking forward and keep in touch.
Love.
Sylvia xxxx
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Hello Helen,
Thank you for your post. I do hope you are recovering well from your bilateral mastectomy. I can understand how you were thankful that the drains were removed in the hospital. It was the same for me when I had a mastectomy of the right breast. I was in hospital for five days and at that time they liked you to be in hospital until the drains ran clear and could be removed. It seems different here and patients are sent home more quickly, often with the drains.
I can understand your distress as you waited for surgery while you were doing your chemotherapy first. I was really distraught about having a mastectomy and being in hospital, because I had never been ill. I kept hoping that I would not need surgery, but the chemotherapy nurses told me that surgery was always done. I really hated being away from home.
Keep an eye on any numbness and/or soreness.
I did have stitches but they were self absorbing.
Did you have a visit from the physiotherapist while you were in the hospital? I had one the day after the surgery and she showed me exercises to do to keep the arm on the move. I was also told to sleep with my right arm resting on a pillow that I had to put at the side on me.
The possibility of lymphoedema was not mentioned to me but of course I now know that exercises etc. are important to try to avoid lymphoedema. You should ask about all this.
Please let us know if we can be any further help and support.
Love.
Sylvia xxxx
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Hi Helen,
Glad you are recovering from BMX, I find it very interesting that you got to stay in the hospital for 5 days. When I had mastectomy, I had surgery in the morning, woke up in the afternoon and was still under the anesthetic's effect for the rest of the day. I was also given an oral pain med that kept me awake, I was restless all night and got very little sleep. At 7:00 AM the next morning a therapist came in and showed me the exercises I would need to do at home, then they brought me breakfast. I wasn't even finished with that when they came in with discharge papers and said it was time to go. By 8:30 AM I was in a wheelchair and being taken out, with drain inserted and handsful of papers I had to figure out. I felt I was given the bum's rush. I would have been happy with even one more night of care! I suppose they think if only 1 breast is removed that's not necessary, I was in no shape at the time to do a lot of questioning.
When I got home my husband was in bad shape and the Home Health Nurse was with him. She told me 5 minutes later he needed to be taken to the hospital to have his lungs cleared out, since he was having trouble breathing, and she would take him there. She waited till a friend came over to stay the night with me and then out the door they went! What a night, I took double pain pills and slept till 4 AM when my friend woke me and said it was time to empty drain for the first time, according to schedule.
I did not have reconstruction either. My remaining breast is small, so it's not as if I feel lop-sided, although I do miss the other breast esthetically. My surgeon wanted me to have the recon, she suggested I have the other breast removed and then recon just to be symmetrical. She also said there was no reason in my case to remove the other breast medically. I did not have anyone to be with me every day while I recovered from the double BMX. As I said, my husband was ill at the time and would not have been able to help me. I know quite a few people who had the double recon, it is a long recovery and one needs quite a lot of help at home.
I am glad you are finished with your treatment and wish you a speedy recovery and no future problems!
Talk to you again, love,
Mary
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Hello Monica,
I was so glad to know that your radiotherapy is going well and that you are now four down and eleven to go.
I think the radiotherapy treatment probably builds up just like the chemotherapy treatment does. I think fatigue is quite common. You also have to take great care of your skin and I know that you are doing just that. I had no problem with skin issues but I did have a bit of redness after treatment finished. I got it checked out and I was just told to keep moisturising.
I think it is a good idea to keep well hydrated.
As you say, the actual treatment does not last very long but I did find it tiring going in for treatment five days a week. In June/July 2006 when I was having it done, there were major road works on the roads from Exmouth to Exeter and we were having a heatwave.
I was told not to use Dove soap during the radiotherapy. I was using unperfumed Dove at the time, so I switched to Simple soap and have used it ever since. I was told not to use the Dove because it has metal in it. I was also told not to use talcum powder for the same reason. I have never used it anyway.
I am fine but not happy that the heatwave has come back after about a week of cooler temperatures.
Keep posting and let us know how you get on and if you learn of anything new in the radiotherapy treatment.
Love.
Sylvia xxxx
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Hello Ellen,
Thank you for your latest post.
How did the appointment with the oncologist go? Did she tell you what kind of breast cancer your mother has? Invasive ductal carcinoma (IDC) is the most common. Did the oncologist mention the size of the tumour that has been removed? It sounds as though it was quite big to have been put down as stage 3.
Breast cancer with triple negative receptor status is usually grade 3. These are the details that patients are usually given – kind of cancer, receptor status, stage and grade.
It is good news that the CT scan was clear.
I am assuming that the bone scan that she has now had was a bone nuclide scan to ascertain whether there was any spread to the bones. I had this scan and the CT scan, both before and after treatment. You are radioactive for a while after the bone nuclide scan.
The other scan for the bones is a bone density scan (DEXA) to see whether you have osteopenia or osteoporosis in the bones. It is a good idea to have a DEXA scan before and after treatment. This way you can tell what effect the cancer treatment has had on your bones and whether the bones have deteriorated. This is a simple scan compared to the bone nuclide scan.
I do not like the idea of all these percentages. They introduce worry and anxiety into the patient's mind and the patient already has enough of this with the diagnosis. It is a way of pushing chemotherapy, but that is my own personal opinion.
None of us knows what is going to happen to us during the years after we have finished treatment.
As for chemotherapy, I think it is more useful to explain to a patient that chemotherapy is systemic (going to all parts of the body attempting to kill off cancer cells), whereas radiotherapy is localised on the chest area and under the arm inan attempt to kill off stray cells there.
The important thing is to let your mum make her own decision about chemotherapy treatment, even if that is hard for you.
It is the quality of your mum's life that is important.
I do wonder sometimes about how they seem at the hospital to bring in age, but the age seems to change. I was nearly 63 when I was diagnosed and I was just told I needed chemotherapy before surgery to shrink the tumour (six months of it) and then a mastectomy and then three weeks of radiotherapy with boosters included in that. I was happy with that but it still took me time to decide to start it.
You are right to decide to just make the most of every day. Live it to the full with your mum.
I do hope you will get the treatment dates without too much delay. I do not think you have told us which country you are from. I somehow feel you may be a fellow Brit. There seems to be quite a wait for treatment sometimes, but I hope this will not happen.
I was interested to know that they have already put your mum on a bone tablet. Would this, by any chance, be a bisphosphonate, something like Fosamax?
Take care and look after yourself. This must be a very difficult time for you as an only child. If you feel you need more support there are always cancer organisations that are there for the patient and the carer.
Thinking of you.
Love.
Sylvia xxxx
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Hello Sylvia and Mary,
Thank you both for replying. Mary I am sorry to hear of your very short hospital stay and your husband being ill and hospitalised upon your return home. How horrible for you both. I had to insist on staying, my surgeon too would have been happy for me to go home day two also! I knew I wouldn't have coped at home.
A physio did visit me in hospital, Sylvia, and gave me a one pager on exercises, which I have been doing, although I have reduced the number or times as I have become sore. I went to see a physio a few weeks before surgery to ask about how to prepare and how to recover and avoid lymphedema.
I feel more sore now than I did a week ago. But I am not as numb. So I suppose I am feeling the real injury I have sustained. I just hope I haven't over done it or there are problems with my healing. Thankfully I see the surgeon Tuesday. I hope that removal of the dressing will make my chest and underarms feel better. I have swelling on each breast and I can feel the fluid when I move which is somewhat disconcerting. My right breast and arm (the prophylactic side) is healing well and I almost have full range of movement already so I suppose this makes my left side appear worse.
Wishing those of you in treatment a speedy recovery xxx0 -
Hi Sylvia, thanks for your post - yes it is a bisphosphonate but can't remember the name - will find out. Mum knows that the radiotherapy is local and chemo is systemic - she is fairly bright but does put herself in a bubble. She is vey independent and quite vain (despite her age), so to lose her hair would be unbearable. My friend has told me about turmeric capsules so I am putting her on them to see if they help - every little helps !! Best wishes to you and all the lovely ladies on this forum - cancer is truly awful but we must deal with it as best we can. xxx
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Hello all,
Ellewebs (Ellen) - it sounds as though your mother has made her decision, and , at 81, the risk/benefit ratio is probably a bit different to my mother's - and my mother's would be different to someone ten years' younger than her, and so on. Even in my mother's case, there was one doctor who thought the risks were too great, although the subsequent two doctors overrode this.
And with a 50% chance that your mother's cancer will come back, she may well be in the 5/10 for whom it doesn't. I do know of one lady who had TNBC twenty years' ago (before TNBC was really separated out from other breast cancers) who only had a mastectomy and no other treatment and never had it come back. Don't know anything about her age/stage/ nodal status, but it is good to be reminded that some women are cured of this by surgery alone.
I guess that all either of us can do is try to enjoy our mothers while we've still got them around,and hope(and it is not a groundless hope) that that is going to be for a while to come.
Sylvia: thought I should report back on our consultation with Dr Elizabeth Thompson. It was by Skype as my mother didn't have the energy to go down to Bristol.
Generally, we liked her and found her attitude towards medicine refreshing in that she really does consider the whole person and not just the disease. My mother and I are both fairly conventional in our attitude towards medicine, and felt reassured that there was nothing particularly "hippy" or "new-agey" about Dr Thompson (of course she is an NHS oncologist and palliative care expert as well as a homeopathic doctor, as you yourself had told me).
She did recommend Iscador during and after chemo as well as a homeopathic treatment called natrum carbonicum. My mother was very concerned that it might interact with the chemo agents; Dr Thompson said she didn't think it would and that, out of her patients who had asked their oncologists if they could use it, 9/10 of the oncologists were happy with the idea. However, she did say that she was keen my mother shouldn't feel caught in a conflict between her, Dr T, and her Oxford oncologist. She added that, if the oncologist turned out not to be keen, she could see us again after chemo and maybe discuss the use of Iscador then to boost the immune system.
When asked about supplements, she said that, generally, it really was better to get nutrients from food rather than supplements, and that maybe my mother should consider eating more curries rather than taking turmeric. She added that curries were also good for lowering blood pressure (not that my mother has problems with that actually).
She advised against eating processed meat and refined sugar.
We saw our Oxford oncologist, Dr L, the next day and she wasn't entirely happy about my mum taking the Iscador during the chemo as she said its safety record had not been proven, and that, although she did have patients who had taken it after chemo, she has not personally treated anyone who had taken the iscador during it. She seemed happier with my mum taking turmeric, even the supplements, as people often eat a lot in their diets anyway.
I think my mum is now leaning towards not taking the Iscador during chemo, but maybe carrying on with the turmeric. She will probably revisit the Iscador afterwards.
Interestingly, my Swiss friend, whose mother had breast cancer (spread to nodes but not TNBC I think) 5 years' ago, said that she has been taking Iscador ever since her diagnosis to boost her immunity. In Switzerland, as in Germany, it is clearly used commonly alongside cancer treatment. I do wonder whether, if we had lived in Switzerland, our conversation with the oncologist would have gone differently. So hard to know about all these things!
Ellen - is it worth you looking into Iscador for your mum at all, particularly because you won't have the issue with it clashing with chemo? Might at least be worth a consultation with Dr Thompson in Bristol? (via Skype if easier). Although Dr Thompson said she mostly prescribed it to help with chemo side-effects and boost immunity, she also said there is some evidence that it can extend survival (though the studies that have suggested this have not been of sufficient "quality" to allow the treatment through the NHS drug gateway).
A general question to everyone: did anyone take aspirin during chemo? My mother is convinced enough about the benefits of low-dose aspirin to start taking one a day, but does not know whether it's contraindicated with chemo?
Right, I've really gone on and on!
I hope everyone's well. Our British heatwave continues, and it feels like the end of the summer holidays rather than the beginning, with the fields parched and the blackberries already ripe!
I hope Sylvia and Mary can get some answers re: the leg staining issues you're both having.
I hope Susie is feeling ok about ending her treatment at Charing Cross and re-entering "normal" life, whatever that may entail. Lots of good things hopefully!
Flora x
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My younger sister, 28 was diagnosed with triple negative breast cancer 9 months ago. She received a trial drug but had to stop due to the side effects. She then went on Carboplatin/Taxol for 10 weeks, saw improvement. Then she went on AC (doxorubicin/cyclophosphamide) for 8 weeks. She underwent a left side mastectomy where 55 lymph nodes were removed, 33 that had cancer. She is still recovering from the surgery but will undergo radiation very soon. I've been reading about vitamin D being beneficial to help stop the metastasis of TNBC in mouse models. Also, I read research about Luteolin injected mice that suppressed TNBC at 10-20mg/kg. I understand these are mice studies but am curious if anyone has any experience with these two compounds and TNBC.
We live in California. Looking for any advice.
-Thanks
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HI Flora,
Thanks for the update. I still have radiotherapy to do before re-entering normal life. I have, however, asked Breast Cancer Care for their 'Moving Forward' pack. While, I have found the experience of having breast cancer and being treated for it interesting, I feel very positive about getting back to normal!
Susie
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Hi Flora - thanks for your reply - never heard of Iscador but will investigate. So lovely to have so much support and care on this forum. Ellen. x
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Hello everyone,
I am posting a few recent photographs of some of the shrubs and flowers in the grounds where I live. It has been very hard keeping them in good shape with all the heat and lack of rain.
I do hope this will be a good week for everyone.
Best wishes
Sylvia xxxx
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Hello helenlouise,
Thank you for your latest post to Mary and me. I shall reply later on in more detail.
Hello ellewebs (Ellen),
Thank you for your latest post. I shall reply in more detail later.
I am interested to know why your mum has been put on bisphosphonates.
With so many different people it would be helpful if you could put your mum's details under your post, so that we do not get mixed up with other posters and so that we can have a look at the details each time. If you do not do this we have keep going back to former posts to remind us of the details and treatment.
Hello Flora,
Thank you for your recent post. I was interested in what you said about Dr Elizabeth Thompson. I shall reply in more detail later. For the moment all I can say is I really liked and respected Dr Thompson. I was with her for five years, had quite a few appointments with her and felt that she had really got to know me. I took Iscador before, during and after all my treatment. Dr Thompson worked with my breast cancer consultant, who referred me to her and referred other patients. How much the oncologist joined in I have no idea. She would have known as they worked as a team but I did not discuss this kind of thing with her, even though I got on very well with her. Oncologists believe in 'their' drugs and nothing else.
I shall write more later. Just make sure that your mum does what she wants.
Give her my best wishes.
Hello bryce99,
I was so sorry to read about what your younger sister, at 28, is going through.
I do hope she is making good progress. We shall do all that we can on the thread to help and support both of you. We do not give advice, because we are not doctors, but we have lots of experience, knowledge, tips and useful information, but especially lots of sympathy, comfort and support.
I shall write more later when I sit down to answer the other posts. I was surprised that your sister has had 55 lymph nodes removed, 33 of which had cancer. Did she have a large tumour?
I think a lot of us on the thread take vitamin D regularly. I certainly do and have been doing so for 13 years. Lots of cancer patients have been found to be low in vitamin D.
I do hope someone will post in about Luteolin. That is a new one on me.
Take care of yourself and your sister.
Best wishes to everyone. Enjoy your week and enjoy each day to the full.
Love.
Sylvia xxxx
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