Calling all triple negative breast cancer patients in the UK
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Hi, Sylvia
You really did some digging to find Sam52 and her posting history. I do hope she is okay and busy with life. I tried a little bit to find Val and see if I could tell what part of the Carolinas she lived in, if you followed it you could see we had a hurricane in that area which has caused massive flooding. I did not find her location, but really haven't had time to do a lot of looking.
You ask how I am doing: I am doing quite well, I think; except since I returned from my trip and the worries about my brother I have just been very tired. Last night I attended a child's birthday party, was home early, and just dragged myself to bed early. Better today, but I think the mental stress gets to me, I haven't really had to deal with that to this degree since my husband was so ill. Once again I have that feeling of hopelessness, in this case about my brother, that there is nothing I can do to help. My brother is better, he appears almost normal, but has intense pain in his neck that right now is only controlled by opiates. He was reluctant to take them, but double-dosing with them is the only way he can function right now. Therapy starts today, his daughter (the nurse) and I just wonder if we should be taking him elsewhere, there are docs a couple of hours away who do advanced nerve surgery. So we are thinking about a second opinion, but really don't have the first opinion yet, not until next week when he sees the spine surgeon who saw him in the hospital. The pressure is that there is a window of time, 6 weeks to 2 months, with an injury like this. We understand that after that any improvement is doubtful. Next week will about 3 1/2 weeks.
I have seen Binny4's name too on the lymphedema site. I thought lymphedema was primarily from the lymph node surgery, and the disturbance that causes in the flow of lymph, I suppose chemo can aggravate that?
To add to confusion about lymphedema, I saw part of a TV show last night about a woman who had lymphedema surgery. She was grossly overweight, almost 600 lbs. She had to lose roughly 100 pounds and then a surgeon removed a big flap of skin that hung from one thigh, about 25 lbs. worth. To me what he removed looked like fat, but they called it lymphedema. About 4 lbs. of fluid also ran out. After that the woman was supposed to lose another 100 lbs and then have weight-loss surgery. I did not finish watching but went to bed, not sure how it all turned out.
I am having an ultrasound on my legs next week, because I am going to see the vein doc about a week later for a consult. I have been having slight swelling and pain in my ankles, partly it seems like the neuropathy pain; I would like to find out what an ultrasound will tell about the state of my legs. I also have a lot of leg cramps, even though I try to keep up with minerals and massage. Leg cramps can also be a part of neuropathy, I would like to see what I can find out. I would rather do something than just progress to venous ulcers, that is a miserable thing, my mother-in-law had a small ulcer that wouldn't heal. Compression stockings are good if you can bear them, since chemo I have developed an allergy to the elastic in some of them, and the ones I am not allergic to are so tight they cut off my air, I can't bear tight clothing. Acupuncture helps the ankles too, I saw that doc yesterday and my ankles are in good shape today; sitting for long periods with feet down seems to be the worst thing for them.
I must close for now, will talk again soon, love,
Mary
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Incidentally, does anyone else find themselves, on explaining their situation to people, saying, 'I've got breast cancer', while pointing at their breast in case the other person doesn't know where that is?
Susie
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Hello Mary,
The hospital was just amazing, but very expensive. A treat in any other circumstance!
I was given an injection of radioactive isotope a couple of hours before surgery. During the operation the surgeon uses an instrument that picks up the radioactivity and lights up the lymph nodes, making the sentinel lymph node easier to find. As the injection is around the nipple, not actually in it, it's not something anyone would look forward to. However, I was given numbing cream and didn't feel a thing.
Was interested in what you've written about lymphedema. It's all very confusing. I had thought that only a complete clearance of lymph nodes caused real problems, seems that I'm very wrong about that.
Hope there's a positive resolution to your brother's injury. I'm sure that you could do without the worry.
Gill
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Hello Gill (Rosiecat),
I was glad to know that you had your surgery and that you now have that behind you.
As I have said before, you are quite welcome to stay with us as you do have the triple negative receptor status. There are many different kinds of breast cancer and anyone is welcome to join us for support and information. There have been people on here with hormonal receptor status. Whatever kind of breast cancer we have, and whatever the receptor status is, the standard treatment is surgery, chemotherapy and radiotherapy, with very little variation. Post treatment is different because those with hormonal breast cancer will have oral anti-hormonal medication, tamoxifen and/or drugs such as anastrozole, depending on whether they are pre-menopausal or post menopausal. The drug anastrozole (brand name Arimidex) is known as aromatase inhibitors.
It is a great pity that the NHS is having so many problems. Everything has become too overwhelming for this wonderful system that was brought in in 1948 but has not been sufficiently funded or staffed to be able to come with a much more complicated and expensive treatments.
Please let us know what your histology results are.
I was told that breast cancer surgery is not considered major surgery and that came from my breast cancer consultant/surgeon. I was told it would last about 45 minutes. She told me hip surgery and hysterectomies were considered major surgery. I had no pain either and no problems, but I think some patients may have problems with anaesthetic. We are all different.
Many thanks for the information about the injection prior to the sentinel lymph node removal during surgery. I did not have anything like that unless it was done in the operating theatre before surgery. I do not think I had anything like that but I just know the surgeon removed seven lymph nodes and just the sentinel node was positive.
The most important thing after surgery is to do exercises to keep the arm moving. I had a physiotherapist come to see me the day after surgery and showed me how to do exercises.
I know the NHS used to do a blue dye injection to look at nodes, but I did not have it.
There should not be anything confusing about lymphoedema. It is a common long term side effect of cancer treatment. It has not had much publicity in the past, but it is getting quite a bit now. I think the possibility of lymphoedema should be mentioned to all breast cancer patients before treatment. You can learn all about it in a book entitled Let's talk lymphoedema. I did mention to Mary a booklet that I read recently entitled Breast cancer related lymphoedema by BSN Medical. It makes sense to read it. Look at their website.
I do hope that all of you are reading the posts from everybody else on the thread, otherwise you are not picking up on all of the information.
In that booklet there is a list of risk factors and they are as follows.
Lymph node surgery
Radiotherapy
Post-operative drain
Wound infection/cellulitis
Cording (axillary web syndrome)
Seroma formation
Advanced cancer
Obesity, weight increase
Trauma in an "at risk" arm (venepuncture, blood pressure measurement, injection, chemotherapy)
We now know that the taxane drugs, paclitaxel and docetaxel, cause lymphoedema. This is my own added bit and it is in the book I mentioned.
Lack of exercise
On this chart there is also a list of early signs and symptoms and complications.In this booklet it says that lymphoedema can be one of the most dreaded and unfortunate outcomes and that currently there is no cure for this chronic condition. It further says this creates a very distressing and upsetting situation where patients having survived breast cancer are forced to live with a lifetime risk of developing lymphoedema.
I must admit that my own experience of lymphoedema has not been bad at all. I developed it shortly after I had finished treatment, had two sessions with a lymphoedema nurse, chose not to wear a compression sleeve, was discharged from the nurse and had no problems until eleven years later, when it came back. I think mine was triggered by a flu jab, even though that was done in the left arm and not the right arm where I had had the breast cancer etc. I am dealing with it well and it does not bother me at all and I carry on using it normally. Nevertheless, I do hear lots of women are being very badly affected.
You might want to look at some of the threads on the Lymphoedema forum.
I would think that with breast cancer surgery it is very easy for the lymph system to be permanently damaged, even with a lumpectomy.
Wishing you well.
Sylvia xxxx
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Susie,
I think I do remember doing that pointing gesture back in the earlier days, usually when sitting around in the Cancer Center waiting for an appointment and chatting to other people with various kinds of things going on. One man pulled his shirt up over his head and showed me a very large hole in his upper back where he had had skin cancer removed. I did not go that far as to pull my shirt up!
Mary
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Hello everyone,
I am posting a definition of what breast cancer lymphoedema is from the booklet by BSN Medical, www.bsnmedical.co.uk. The definition is as follows:
Lymphoedema results from a failure of the lymphatic system. Consequences are swelling, skin and tissue changes and a predisposition to infection. It most commonly affects the lower or upper limbs, but may also affect any part of the body and is classified as either primary lymphatic, or secondary lymphoedema.
Lymphoedema that develops during or following breast cancer treatment is a secondary lymphatic condition.
If anyone else has had the pre-surgery treatment that Gill had recently, before her mastectomy surgery, it would be useful if they would post in and let us know.
I do hope you are all managing out there. Helen, Susie, Gill, and Cocooncat, keep looking forward with your treatment and Flora and Ellen, I hope your mums are both doing well.
Moth, are you about to start on the second part of your journey?
Monica, what is happening with you now?
Mary and Kath in Australia, you seem to be the only two now of all the group that finished treatment to be posting regularly. Thank you for staying on to help others.
Wishing everyone well.
Sylvia xxxx
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Hello Mary,
Thank you for your post. Yes, I did do a good search to look for sam52. It was so interesting to read the posts back in 2009 between us on the forum Not diagnosed with a recurrence or metastases but concerned, in the thread High blood calcium. I think it is important to try to keep it going because, when you have been diagnosed with breast cancer, and are found to have high blood calcium, it is important to know whether you have this due to metastases to the bones or due to an over active parathyroid gland, which also leaches calcium out of the bones into the blood. This is important because of a possible connection between breast cancer and an overactive parathyroid gland. If it is the parathyroid gland, you need a parathyroid hormone blood test to diagnose parathyroid disease.
That is why it is also important to try to keep Sam's thread, Parathyroid disease and breast cancer, in the forum IDC (invasive ductal carcinoma). I have just bumped both threads up and found a post on both.
Like you, I do hope Val is alright with that raging hurricane. It has been in the news quite a bit here. We are now getting storms.
I was glad to know that you are doing well and that you are just tired from your trip and from your brother's accident. It will do you a lot of good to have some early nights and plenty of sleep. I do sincerely hope your brother will make good progress and I hope you can manage to be optimistic about the outcome. I do hope you get to the bottom of what caused this accident.
You will see that I have written some more information about lymphoedema. It can be caused by all three of the standard treatments for breast cancer and it can appear anywhere in the body. The lymphoedema forum is busy but I think it would be so much better if there was just one thread dealing with it. I tend to look through and concentrate on those where I see Binney4. I saw that she has done over 8,000 posts and that she joined bc.org in 2004. I am not sure if everything has been in lymphoedema.
I shall be very interested in how you get on with the ultrasound, and what happens when you see your vein doctor later.
I have my own theory about problems with veins. Having read that book about venous eczema I cannot see there is any cure to this by doing things with the veins. It seems to me that since we are told the problem comes from the valves in the vein not closing, and that this results in pooling of blood around the ankles, the only solution seems to be find a way of making the valves close. I cannot see that compression stockings are the solution. Of course, if you elevate your legs the blood will go up towards the heart, but as soon as you stand up the faulty valves make it go down again.
As I have said before, I read that the lymph system and the veins are close in the body, so if you damage either system you probably damage both. I think my lymphoedema has caused the vein problems. I am not wearing any compression at all.
I was interested to know that acupuncture seems to do you some good.
You are dead right, that sitting for long periods with feet down is the worst thing to do. I am doing all sorts of exercises for both the arms and the legs.
That is about all for now. Thank you for being so supportive on the thread.
Love.
Sylvia xxxx
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I had the blue dye contrast for my lumpectomy in February. I think it's considered essential these days.
Susie
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Hello Susie,
Yes I've heard about the blue dye and asked about it. Apparently the injection of radioactive isotope and the use of this tool to light up the nodes during surgery, means the blue dye is no longer needed.So no more blue skin to put up with.So much seems to be happening in the world of breast cancer, at long last.
I posted about your last comment, but it seems to have disappeared somewhere. Yes I do point to my chest when telling people I have breast cancer. Probably start pointing to my non-existent left one now, just so they're clear! When I say non-existent, a breast care nurse bought me a whole bag full of beige 'softies' and we chose 3 that looked closest to my size, (small!), don't think I've laughed so much in weeks. Anyway, all is well on the chest front now. Also bought a really good mastectomy bra at M&S in a racy colour and it actually came VAT free. There's an upside to everything.
Love,
Gill
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Hello, everyone; it has been a very long time since I have checked in with you. It has been a very busy summer with lots of coming and going, and computer breakdowns to add to the mix. I hope that all is well with you and say welcome to new visitors to this forum. All is well here; as of August 18, I am still NED for cancer; my tumor markers were back up to where they were in April, though they were down a bit in June after repeat scans. So, though they were back to April values, the MO has decided that maybe that is "my normal". We will seen what happens when the next scans are done in mid-November; interestingly, I will get those results exactly one year to the day after I started radiation therapy. Though I consider that my cancer "was gone" as of my lumpectomy date in July 2017, the MO goes with October 30 as the "anniversary" as that is the first time she saw me.
We have had LOTS of damp weather and cold temperatures (at 2C with a "real feel" of -4C here today), which is so unusual for September here and, after a very dry summer where the farmers were mourning the lack of rain for their crops, now they are frustrated with all the rain over the last two weeks which is hindering them from getting their crops off. Unfortunately, there is nothing they can do about it.
Will let this do for now, and will be back soon; must do some reading to catch up with you. Have a great Fall. Hugs!!!
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Hello Nancy,
It was nice to see you back on the thread and I was glad to know that all is well with you. Keep up the good work.
The weather here is very similar to that in Canada. We have gone from a long, hot, dry summer in the south of the country, and now we are getting rain, but certainly for Exmouth, we need it in buckets!
There are quite a few new people on the thread now - Monica in the US, CocoonCat and HelenLouise (Helen) in Australia, and SusieW5 and Rosiecat (Gill) in the UK and Flora and Ellen are both in the UK and posting on behalf of their elderly mums. Mary and Kathsward (Kath) continue to be dedicated posters.
Keep in touch and I hope you will manage to catch up with all the posts.
Fond thoughts.
Sylvia xxxx
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hi everyone
Hope all is well. Got through my mammogram on Friday with no problems. See my surgeon again in 12 months and the onco in January. Happy that that is over for another 12 months but not sure how I feel! May have 6 monthly bloods but a little scared to do that yet.
Still lots of aches and pains but stretches Pilates and dry needling slowly helping. Still have very dark days and worry with each ache and pain but taking each day as it comes.
Off to Malaysia and Thailand in a month which I'm really looking forward to. Uni is full on and the pharcology and pharmokinetics unit that I'm doing is very intense.
Sylvia the quadravalent flu vaccine u have in the UKand the trivalent strong vaccine for over 65 is the same as the one used here in Oz with great success with over 14 million doses given out in the public sector. We are seeing a late influx of flu B though.
Stay well everyone
Much love
Kat
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Hi, Nancy
Good to see you here again, so glad all is well with you and your scans are good. I hope you feel quite back to normal.
I think there is some confusion when our cancerversary date will fall, I chose the date of diagnosis, that seemed to be the predominant date chosen.
Our temps are also cooler, but we are not down as low as you are yet. I hope we can have a longish fall with moderate temps, so tired of the extreme heat of summer. We have also got some rain, it was very welcome after a long dry spell.
Come back later if you can, talk to you soon, love,
Mary
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Hello Kath,
I was glad t know that all was clear with your mammogram. That is behind you now.
I do hope you will have an enjoyable time in Malaysia and Thailand. Please try to send us some photographs of your holiday.
Stop thinking about breast cancer and concentrate on your studies at the university.
Thank you for the information about the flu vaccinations.
I am wondering what the difference really is. Is there really an immune booster in the over 65s vaccine? Why is it three for one group and four for the other? Please excuse all my questions. That is the way I am!
Love.
Sylvia xxxx
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Hello Kath,
I was glad t know that all was clear with your mammogram. That is behind you now.
I do hope you will have an enjoyable time in Malaysia and Thailand. Please try to send us some photographs of your holiday.
Stop thinking about breast cancer and concentrate on your studies at the university.
Thank you for the information about the flu vaccinations.
I am wondering what the difference really is. Is there really an immune booster in the over 65s vaccine? Why is it three for one group and four for the other? Please excuse all my questions. That is the way I am!
Love.
Sylvia xxxx
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Hello everyone,
It's now six days since my mastectomy and the removal of a few lymph nodes. Not had any problems at all until earlier today when I felt under my arm and realised that I'd lost all feeling. Not a major issue in the great scheme of things and I'm aware that this somtimes happens. If anyone here has experienced this, could you tell me if the feeling is likely to return at some point in the future?
To end on an upnote, Summer has returned to Norfolk. Lovely mild sunshine, blue skies and just a slight breeze. A lot of wildlife activity in the garden and surrounding fields, with the rabbits scurrying about, the deer eating everything in sight and the pheasants chasing one another enjoying the sunshine just as much as I am.
Love,
Gill
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Hello everyone,
It's now six days since my mastectomy and the removal of a few lymph nodes. Not had any problems at all until earlier today when I felt under my arm and realised that I'd lost all feeling. Not a major issue in the great scheme of things and I'm aware that this somtimes happens. If anyone here has experienced this, could you tell me if the feeling is likely to return at some point in the future?
To end on an upnote, Summer has returned to Norfolk. Lovely mild sunshine, blue skies and just a slight breeze. A lot of wildlife activity in the garden and surrounding fields, with the rabbits scurrying about, the deer eating everything in sight and the pheasants chasing one another enjoying the sunshine just as much as I am.
Love,
Gill
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The 65+ flu vaccine has an extra 'booster' to galvanise the immune system into helping fight off flu. This is after two years in which the jab hasn't been very effective in older age groups.
We under 65s are getting protection against one extra strain because there isn't an 'enhanced' version of the 4-strain one.
I had my flu jab on Thursday. I think the 65+ one is about to be rolled out.
Susie
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Hi, Sylvia
I think you were lucky to find out about your parathyroid, I don't think that's something I've ever heard about except for you telling us. I don't think it's commonly tested for, and it seems to be a hint that there's something else going on in the body.
I saw my brother this morning and I thought he looked really good, (normal, really) and he said his pain was quite a bit better, he has backed off the pain pills. I am really glad about that, I was concerned about the pain being long-lasting, it's just an unknown when dealing with spinal cord, nerves, and disk injuries. He sees the Spine Surgeon tomorrow, for a follow-up visit. This doc did not recommend surgery, but he is down on paper as the admitting physician when my brother was sent to the Trauma Unit. Therapy started for my brother today too, I will be interested to hear how that went. I am feeling much better about the whole situation now.
I think I have seen Binney's name on other threads, she's been around this forum awhile. I was reading the list you posted of risk factors for lymphedema and it's mind-boggling, amazing that I never heard of lymphedema before I had cancer. I suppose this is one of those things that you don't really think about till you are older: simple math would say the older one becomes, the more likely to have a condition, or a surgery etc., that might cause the beginnings of lymphedema.
I did see the vein doctor today. I told the nurse and the doc that I was there for a consultation, and was not going to commit to treatment today, that was all fine. It was quite interesting, this doctor explained things much better than the previous doctor had, and answered every question I had. He spent at least an hour with me. He even explained why it was that when the previous doc injected above my ankle in 2016, it caused pain in the area for a year. It is because the location where I was injected, is in very close proximity to a nerve, and sometimes when these vein procedures are being done, a nerve is impacted and he said it happens and there is no good way to protect against it. That was one of my major concerns, would doing further treatment on my bad veins just cause me more pain? The answer is: possibly, no way to predict. There is never an easy answer it seems, no black and white. My ankle pain, and swelling is all explained by varicose vein disease, and he admitted the neuropathy is in there too, aggravating things. What is odd to me is that my thighs, and my right calf, were considered "finished", as far as treatment went. While I am aware that the vein issue never goes away for good, it seems very odd that on ultrasound, the left calf seems to be doing much better than the right! Both ankles are equal in how they feel to me. If I sit too much with my legs down, or do too much driving they will both hurt and swell a bit. And actually the whole of both legs will ache until I elevate them or move them. The varicose vein symptoms are: aching, tiredness, fullness, leg cramps, and so on. I have every symptom listed, but don't know if further treatment will cause more problems because of my wide-spread neuropathy. If you have questions, let me know, I am still digesting all this. If nothing else, I think I have met a very good vein doctor!
You are spot on with your theory about problems with veins. Even by doing all the sessions recommended, they tell you that it is not permanent. (My comment always is "neither am I!") Compression stockings can work, but who could wear those things all day every day, not a pleasant thought. I do not wear them, I have tried on an airplane and found them so uncomfortable I couldn't relax. They are required for a week after every session, if one has the treatment. When I did have treatment before, I wore the thigh-high hose, since chemo I can no longer wear those because the material that holds them on the thigh breaks me out in an itchy rash.
Just talking about all this is making me leary of trying any more treatment. Thank you!!
A bright spot: I do not have DVT (deep vein thrombosis), I have 2 friends that have come down with this and are on blood thinners, probably for life.
And, at least I have my acupuncture doc!
Talk to you again soon, love, Mary
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Hi Sylvia
No there is no immune booster in the trivalent strong vaccine. It just covers the 3 strains that people over 65 are more susceptible to and 4 times as strong to give a better immune response. The under 65 is quadravalent And includes the Brisbane strain! I have enclosed two urls for u to have a look at:
https://www.tga.gov.au/media-release/2018-seasonal...
https://www.tga.gov.au/aivc-recommendations-compos...
Hope you enjoy the read? Our flu season was much milder this year but I hear you are heading for a record cold snap.
Much love
Kath
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Hello
I wanted to update you on my mother's (sadly horrific) experience with chemo so far.
This is not in any way sensationalist - and hopefully not too anxiety-provoking to those about to embark on the journey,as I think my mother's is an unusual case.However, I believe in telling things how they are- also, for those for whom chemo has not been plain-sailing, rest assured you are not alone.
My mother is now half-way through cycle two, and has been hospitalised about 6 times in the last four weeks:
She had a major allergic reaction to one of the anti sickness drugs; on the second cycle this drug was removed, but she then experience a fairly major allergic reaction to the other anti-sickness drugs. Both were rather terrifying.
She had 5 days in isolation in hospital for neutropenic sepsis and , in the second cycle, has had three spikes in temperature, necessitating a spell in hospital for a day each time.
But the worst was 5 days ago when she started having terrifying heart-pounding and was rushed to A and E with a dangerously rapid heart-beat. She was told she had chemo-induced atrial fibrillation and has been put on beat-blockers and blood thinners. Although she was coping with everything before then, the heart episode was frankly terrifying for her, and she has been very weak and breathless since.
I have been there for almost all of these episodes-taxi driver and hopefully reassuring companion-and it has been quite horrible seeing how increasingly shaken she has become.
We had an emergency appointment with her oncologist yesterday. She (the one) was very disappointed with how everything had gone ("This was not the plan!" she repeated several times) and has said it would not be sensible for my mother to continue on the AC regime. She said the heart damage caused so far may or may not be permanent-but certainly it would not be advisable to go on with a drug that has so clearly upset the heart.
She is keen for my mother to have a bit of time to sleep and recover a bit, and then will consider going straight onto the taxane regime. Although-as you all know-the taxanes are not without their side-effects, she said they are easier on the heart.
We of course feel a mixture of disappointment and relief at this juncture. Disappointment that things weren't easier and she will only have completed half of the recommended AC but relief that something that has caused her so many problems is now being discontinued.
We are worried that the heart-damage wrought already may be permanent. This has not been explicitly stated, but we of course worry. However, we know that heart treatment is very good these days-and half my mothers' friends are on beta-blockers for "organic" heart problems - so she is not too too concerned about being on these.
I'm sorry not to be able to tell a more straightforward story but this is a forum for people to share whatever experiences they have had-and get support for those-as well as to offer hope that others may have an easier time of it.
Throughout all this, I cannot fault the care and attention of the Oxford Cancer Triage team-and we are are very grateful that my mum and I live only 10 and 5 minutes' away from the hospital!
As a small positive to throw into this rather wretched picture, my mother hasn't been sick once, despite being taken off two of the three anti-sickness meds!
love to all
Flora
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HI Flora,
So sorry to hear about your mum's terrible experience. She does seem to have been unusually unlucky. Having dealt with major health problems with my own (late) parents, I know how hard it is for the children too. There was a long period when I flinched every time the phone rang, wondering what new crisis I had to deal with.
It sounds as if you are both staying very strong throughout this ordeal and I'm glad that the medics are responding quickly to all your concerns. Being near the hospital is, as you say, a plus point, when you think of all the patients who live in the middle of nowhere and may have a 100-mile round trip for each appointment.
Thinkign of you both.
Susie
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Hi, Flora
How horrible for you all these last weeks have been, it must be so frightening for your mom. I do know what you mean, I also had a hard time with chemo, but have hesitated going into detail for fear of frightening others about to start treatment. But the majority of women do not have all these problems, it's a roll of dice.
How odd that your mom was allergic to the anti-nausea drugs, but turned out not to need them at all! The neutropenia I understand well, I was also put in hospital because of it. The reaction of her heart to the meds is just awful, I hope and pray her heart function returns to normal and will not continue to bother her.
I'm glad she will rest and recuperate, and then you say she will move on to the taxane drug. It is possible that drug won't bother her, many people find it more tolerable than the AC. I kept having my dose of Taxotere cut because of the side effects I had from it, so unfortunately we never know how we will react to these drugs until they are in our system.
May I ask how they decided she was allergic to anti-sickness drugs since all are given at same time? Or perhaps she had it before the chemo drug?
My heart goes out to your mom and to you, I hope she has a good rest and is feeling stronger for the next phase of this treatment. Thanks for sharing your story, and do give her a big hug from me.
Talk to you again soon, Flora.. Love,
Mary
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Hi, Gill
My BC surgeon told me that when she did mastectomy, nerves were cut as well as skin. Sometimes the nerves are only damaged, but sometimes they are permanently shut down. In my case, I do have feeling under my arm, but the skin over the breast area has tingles, shooting pains and feels numb at times too. I have a feeling it's permanent for me. But you are only 6 days since surgery, so things will evolve quite a bit over time. There's really no way to predict what nerves will do.
Glad you are having such nice weather!
Mary
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Hello Flora,
I was very sorry to read the terrible experiences that your mother has had during her chemotherapy. You are right to describe these in all their reality. This helps others to be informed and to think carefully about every aspect of treatment that they are offered. Your mother's case may not be that unusual. I have read of lots of cases on this forum where people have had a very nasty time during chemotherapy.
It must have been awful for your mother to have been hospitalised about six times in the last four weeks.
I cannot imagine what it must have been like to spend five days in hospital for neutropenic sepsis.
How awful it must have been for her to have been rushed to hospital with chemotherapy induced atrial fibrillation and that she now has to be on beta blockers and blood thinners.
I do hope your mum is slowly recovering, as she must be so traumatised by all this.
We all know how toxic chemotherapy is and the toll it can take on patients. I do remember very clearly that my oncologist told me from the outset that she was going to have to poison my body in order to treat me. She told me that I would be starting with EC (epirubicin and cyclophosphomide). She said that epirubicin (Ellence) was less harmful on the heart than doxorubicin (Adriamycin) but I took that with a pinch of salt because they are both the same group of drugs.
I am assuming that your mum had an ECG before treatment and that her heart was normal. It is good that your mother has been taken off the AC regimen. As for heart damage, if it is damaged, how can it repair itself?
How does your mother feel about continuing chemotherapy with a taxane? As you say, we all know the side effects of docetaxel (Taxotere) and paclitaxel (Taxol). We know that they cause lymphoedema and neuropathy in the hands and feet and probably much more beside. If your mum does decide to go ahead I would think she needs a good bit of time to recover.
My oncologist told me that the taxane drug had caused the neuropathy in my feet and that it was permanent and that has been backed up by my GP and two podiatrists. It is also known that the taxane drugs can cause lymphoedema. You might want to read the recent book by a well known consultant in one of the London hospitals, Let's talk lymphoedema.
There is a new book that has just been published, entitled The Complete Guide to Breast Cancer – How to Feel Empowered and Take Control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan – Expert doctors and breast cancer survivors. It is brand new 2018 and came out just three days ago. I pre-ordered it, have just received it but have had time only to glance through it. I think from the bits I have read it is a must-read for all of us. I noticed in the chapter on chemotherapy it says that surgery gives you the greatest chance of a cure and that chemotherapy is used to reduce the risk of a recurrence. It further says that before recommending chemotherapy your oncologist will consider your general health and lifestyle. It says that for older patients your doctor needs to make sure that you are fit enough to cope with it and that the benefits outweigh the risks.
I can understand how difficult and stressful all of this must have been for you and I speak for all of us on our group when I say you have all our sympathy and support and say please take great care of yourself. I know how hard it was for my husband when I was going through all of this, even though I feel things went smoothly for me, but there were ups and downs.
That is about all for today. Let us know how things progress.
If we can help in any way, please come and let us know.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your interesting post. I shall answer later as I have done a long post to Flora.
Thank Kath for your post and I shall answer later on when I have had a bit of a break.
Love to you both.
Sylvia xxxx
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Hello Flora, again,
This is something else that might be of use. Reading this new book "Most chemotherapy regimens now include a taxane (third generation chemotherapy). If you have a BRCA mutation or a triple negative cancer, you will probably get a platinum-based agent."
You might like to ask about Carboplatin and Cisplatin.
Would immunotherapy drugs be of any use?
Thinking of you.
Sylvia xxxx
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HI Mary,
In the UK the anti-nausea drugs are administered before the chemo.
Susie
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Dear Mary, Suzie and Sylvia,
I was so touched to read your replies to my message, and that you didn't mind my telling things exactly as they were.
Mary-I'm sorry that you clearly had such a hard time on chemo too,and that you too had neutropenic sepsis. As we speak, my mother has just been taken in again because neutrophils are low and she's spiking a temperature, so it looks as though she will be kept for several days in hospital on IV antibiotics-as happened last cycle. Actually, we are relieved as the last few days have been a nightmare of to-ing and fro-ing, even though we both live so close!
As to how they knew she was allergic to the anti-sickness: both the first cycle and the second, the reactions happened the evening AFTER she had had her chemo and started taking the anti-sickness drugs. Apparently, if you are going to react to chemo, it happens pretty much as you are having the infusion. The first reaction was a "classic" dystonic reaction to the drug beginning with "m"-sorry, name escapes me. The second was a less dramatic -and much rarer - reaction to the drug beginning with "o". She has been kept on steroids as she had to take these before ten years' ago and didn't seem allergic to them then, so docs are assuming they are ok.
Susie-Thank you. Yes I think she has been pretty unlucky, particularly with the heart issue and the allergic reactions, but I know from the nurses' reactions that she is certainly not unique in experiencing these.
Sylvia- you are right that we are going to have to think very carefully about the taxanes too, and I think the only way we are probably going to be able to try them is after a break and then with her staying in hospital while she has the first dose.
Your ideas about the "platin" chemo and immunotherapy are good ones. We have another consult with our oncologist on Friday so I will ask her about these. It is comforting to know we live in an age of options, even if these options aren't always attractive!
Thanks for the ideas about books too.
Re: her heart. We don't really know-in fact haven't really dared to ask- if the heart damage is already likely to be permanent. What actually happened is that, after 8 hours of crazy pounding, my mother's heart did actually stop by itself, and then, an hour later, the doctors offered her beta blockers. We don't know whether this is a good sign. To be honest, neither of us has the headspace to think about what we can do about her heart right now. All we do know is that Dr L's advice- that the heart, once upset, shouldn't be put under any further pressure -sounded good! And Dr L did stress that further chemo might cause long-term heart damage. I'm not sure if she was comparing this to "now" where it's less likely to be long-term- if you see what I mean. Maybe she was being deliberately opaque as she didn't think my mum could take much more bad news...
Anyway, thank you , thank you to the wonderful band of Triple Negative warriors!
We'll keep you posted on what is decided re : carrying on with chemo generally.
And sometime I must tell you about the interesting Healthy Eating workshop I went to at Maggie's. Getting my mother to eat at all and put on weight is my main preoccupation re: food at the moment!
Hope Ellen's mum's doing ok
Flora x
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Hi Flora,
So your mum was allergic to the oral anti-sickness drugs you take for a couple of days after chemo, not the ones they put into your veins before chemo?
Susie
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