Calling all triple negative breast cancer patients in the UK
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Hi, Gill
If my memory serves, you had a treatment on Dec. 30th, how did that go? If I am wrong, sorry, I have trouble keeping up with what I am doing myself. Sylvia is the ace at keeping all of us straight.
After I was diagnosed with TNBC, it seemed there was a rash of BC diagnoses among women I knew, most of them were of the DCIS variety, and all were the E+ type. Many of these women had no chemo, some had radiation, most had surgery, mostly lumpectomies. I felt alone still, I then and now have only known one other woman with TNBC, she has already passed on, she was Stage IV when diagnosed, I believe. She did not tell me that, I gleaned it from finding out that she had lung mets when diagnosed. She did not seem to be very aware of anything going on, she just did as the docs said and went on as long as she did. I gained my knowledge online and on these boards, but when diagnosed was just a deer in headlights, stunned and shaken and scared to death. I didn't question anything. I had many questions later, and found that my doc didn't know all the answers either. He retired on the day of my last chemo. In hindsight, he either did things satisfactorily or I got lucky, since I am almost 5 years past diagnosis, although I am still very aware there are no guarantees of total immunity.
I did take hormone replacement tabs for many years on the advice of my gyno, I had an early hysterectomy and I worried about BC, but she always said the benefits of HRT outweigh the tiny risk of BC. Well, here I am. Another question nobody can answer, did the HRT help cause my BC? I'll never know for sure.
All righty, I better get on with things, talk soon,
Love, Mary
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Hi Mary,
The plan was that I would have my first Paclitaxel treatment on the 30th, but this was cancelled because of the sepsis and low red cell count. My Oncologist has now settled on January 10th. However, Michael has begun 2019 with a cold and throat infection which he's trying hard not to pass on to me. If any infection shows itself in my blood test on the 9th, treatment will be delayed again. I just want to get on with it now that I'm halfway through.
From everything I've read about TNBC it rarely returns after five years clear, no guarantees as you say, but a very good reason to be optimistic. You've been unlucky with side effects, so I guess they're a constant reminder. Thinking about side effects, I've been meaning to ask about your knee, did the injection work?
I don't see how HRT would cause breast cancers that are TN. We are constantly told by the medics that HRT does more good than harm. Not sure I believe them and I'm very nervous about messing with my hormones. If I'd had an early hysterectomy I would no doubt feel differently. Women's health is such a balancing act, definitely a design fault somewhere.
I knew absolutely nothing about metaplastic BC, never even heard of it. My surgeon told me that I probably knew more than he did. There is research, but most of it doesn't stand up to much scrutiny. I have no idea why anyone would just accept BC treatment without researching it and asking questions. I don't think I could ever just have stuff done unto me on the basis that the doer was a Doctor. This site and this thread particularly have been so good at showing us the experience of people. Mostly very down to earth and honest about the side effects of treatment. I still think that the long term impact of peripheral neuropathy and lymphoedema are played down by the Docs. You, Sylvia and others have done much to enlighten me!
Hair on head is still growing back very slowly, wonder if Paclitaxel will make it fall out again?
Well, time to throw a few more logs onto the stove and think about lunch for the invalid.
Love,
Gill X
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Hi Susie,
Good luck with the eyelashes. If my eyebrows haven't bucked their ideas up by this time next year I'm going to treat myself to a light eyebrow tattoo. My eyebrows were dark, but don't want to be forced into hiding if it goes wrong.
Gill X
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I've been told it's okay to post something like this in this forum. Let me know if not and I will remove it.
maryna8, I totally agree when you say about having no faith that the Democrats in the House of Representatives.
For the first time in my long life I am afraid for America, and not because of Donald Trump, who I did not vote for in the primaries. He's a bully but doesn't deserve the continued harassment and digusting vulgarities. He has done and is trying to do more for this country than many politicians have done in a long time.
Trump's list: 289 accomplishments in just 20 months
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Hello viewfinder,
I am responding to your post of January 4th and have made a note that your sister is having her second lumpectomy surgery on January 8th.
I have never heard of Acutonics but I have heard of some kind of acupuncture that is done without needles. Whether this is the treatment with tuning forks and is called Acutonics, I do not know. Mary has had acupuncture treatment so she will probably be able to tell us.
On the thread we can only really speak from our own personal experiences with our breast cancer treatment, so I can say that my medical team, before I started my chemotherapy treatment and to whom I mentioned that I was taking Iscador prescribed by a homoeopathic consultant, to whom my breast cancer consultant surgeon had referred me, said it was fine to do this but that I should only take oral Iscador and not have as an injection. The fear from injections was infection.
I have made a note that your sister will begin chemotherapy in late January.
Remember in all of this to look after yourself as well. It is not that long that you had radiotherapy and not that long since you started on anastrozole (Arimidex).
How are you doing? Are you keeping a check on your bones with reference to osteoporosis? Have you had any bone density scans (DEXA) to detect bone problems?
That is all for now.
Best wishes.
Sylvia xxxx
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Hello Gill,
I am answering your post of January 4th.
With reference to HRT I think that in the past this was given out quite freely. The medical establishment does not seem to worry about side effects, because they always have something to help with the side effects and all drugs have side effects and there are no exceptions. I think that there is not enough consideration about mixing up drugs. It is good that you were told never to consider taking HRT. I believe, like you, that hormones are not to be messed with. Reading about drugs I am often concerned that some of them seem to be targetted on stopping natural procedures in the body, which I cannot think is right.
You mentioned that you have hypertension and high cholesterol. Are you taking drugs for these? I know that doctors seem to be wanting to medicate everyone over the age of 40 to deal with these two problems, or so-called problems.
I was glad to know that Michael laughed at my brother's TWATAADSA word.
As for the pie and mash, I was talking to my only remaining aunt recently. She is 85 but very lively and young at heart. She told me that the green liquor is parsley and that it is hit and miss whether you can get good pie and mash. She also told me that you can buy frozen pie and mash in the supermarkets.
As for jellied eels, she told me they are delicious and have just one bone in the sections and that the jelly has no taste. She also told me that you can get hot stewed eels.
None of this is for me. I am not that far off from being vegan and think this seems to be a trend. However, I do not like the militant vegans who are going out protesting and attacking farms. That is not the way to go.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post of January 4th.
I do hope you have a nice time in the US Virgin Islands.
I was sorry to read about your woes with your car and I do hope all your bathroom work etc. will soon come to an end.
It was interesting to read what you said about the dog who could sniff out high blood sugar.
When I watch the world weather forecast and the temperatures I always look at St Louis, Missouri, to get an idea of what is happening near you.
The population of Exmouth, Devon, is about 40,000, so it is quite small, but for a lot of the year this is ballooned by the local holiday resort, which can take about 18,000 and increasing. It is called Sandy Bay. We also have tourists coming in all through the year, especially retired people who come in by coach and stay at the hotels on the sea front. Exeter, which is about 12 miles away, has a population of about 150,000. It has a huge hospital called the Royal Devon and Exeter, which is also a university hospital and has an excellent reputation. It also has Exeter University, which is connected with the hospital. My younger brother did almost all of his career as a lecturer in French at this university. He was the Marcel Proust expert.
The weather here is exceptionally cold at the moment.
I am always interested to know about politics and current affairs in the US. I think your country and my country is going through some very difficult and muddled times. In your country the Democrats, having taken control of the House of Representatives is now spending its time attacking Donald Trump, instead of concentrating on helping to run the country, which is what they are getting paid for.
In our country, the whole of Parliament is wasting time on Brexit and the two main parties, Conservative and Labour, spend their time attacking each other.
Just like in your country, where Donald Trump is demonised all the time, Jeremy Corbyn is demonised all the time here.
I think that here we need a General Election and need a lot of fresh faces, as some MPs have been in power too long. To use a Donald Trump expression, we need to clean out the swamp in Parliament and get rid of this 'let them eat cake' attitude that they have to ordinary people who are struggling to make ends meet.
That is all for now Mary. Raymond and I wish you all the very best and I thank you sincerely for remaining so loyal to our thread.
Love.
Sylvia xxxx
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Hello Gill,
I was reading your January 6th post to Mary.
I was sorry to read that Michael has a cold and throat infection. I do hope you do not catch it and that your paclitaxel (Taxol) chemotherapy will go ahead on January 10th.
With reference to HRT, I think it is now accepted that it is a risk for breast cancer. Remember, that breast cancer, like other cancers, is multi-causal, so we can tick boxes if we want to add up our risk factors, but it does not really serve any purpose. Some of those risk factors may have been beyond our control.
We also have to remember that because we have been diagnosed with breast cancer with triple negative receptors, it does not mean that HRT can be ruled out as a risk factor. I remember very clearly that my oncologist told me that within a person's body cancer cells can be mutating. Because of this she told me that my breast cancer may not have started off as triple negative but could have mutated.
My own personal opinion is that I do not believe that HRT does more good than harm. I had no problems with menopause. It was a non event for me, but I have a neighbour who was left on HRT for too many years, had breast cancer in 2001 and is still surviving, and she put a lot of the blame squarely on HRT.
I agree with you that peripheral neuropathy and lymphoedema are played down by the doctors. I think medical teams have to be straight with patients and tell them all the possible side effects of their treatment.
That is about all for today.
Love.
Sylvia xxxx
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Hello viewfinder,
Thank you for your latest post. As I have said before, it is quite alright to post about anything you like on this thread, as I think it is very important for us not to identify ourselves through breast cancer. We may have been diagnosed with breast cancer but we have our own individual identity, views, beliefs, likes, dislikes, and so on and so forth. I firmly believe in free speech and how we have to make sure we use it. We cannot let political correctness encroach on free speech.
I looked up the link you sent and looked at it briefly and can see all the campaign promises that have been kept by Donald Trump. It is quite impressive and as far as I have experienced quite unusual. In this country, it is very common for campaign promises and manifestos to be broken. Politicians here seem only to be concerned with short term and their eyes are always on the ball for what to do to get re-elected. This shows up in the Brexit referendum and all the nonsense we have had to swallow for two and a half years since we had a referendum on whether to stay or leave the EU. There was no mention of a deal. It was just stay in or get out. Since then we have had variations on a deal when no deal was ever mentioned when we voted. We have had since then hard deal, soft deal, medium deal, perfect deal, reasonable deal, even medium rare deal! After the referendum we should have just got out and celebrated independence day. Most of the politicians have been wobbling all over the place.
I have been reading various threads over the past few weeks and have got concerned about some of the comments about breast cancer treatment with particular reference to TNBC.
I have been reading about chemotherapy before or after surgery. I do not think there can be hard and fast rules about this. We are all individuals, our breast cancer is individual and the oncologists will no doubt decide what it best for patients. Of course, patients may disagree and are free to ask questions.
When I was diagnosed having chemotherapy before surgery seemed to be largely based on whether a tumour was large. Mine was large, 6+ cms and I was told that I would have six months of chemotherapy first in order to shrink the tumour and make surgery easier. To me that seemed like common sense. One good thing about this as well was that the tumour was regularly measured during those six months and it could be seen whether the tumour was shrinking.
As for surgery, I have read in the past that when you have surgery there is a risk of spreading the cancer cells, but I think that could possibly apply whether you have surgery first or after chemotherapy. There might still be cancer cells left after your chemotherapy. I was certainly told that the three weeks of radiotherapy that I had, after chemotherapy and then surgery, was done to mop up any stray cells.
I do hope all will go well for you and your sister for 2019. Please keep us up-to-date with everything that goes on. If there is anything that is of particular interest to you, especially with reference to breast cancer, please let us know.
This is the $64 million question: Will Donald Trump hold out until he gets funding for the wall?
I thought you would like to know that Nancy Pelosi has been on our screens a lot since I said that I knew of her but not much about her. I still do not know a lot about her, except that she does a lot of talking!! That applies to a lot of politicians. The equivalent here is the House of Commons Speaker, John Bercow. He is much maligned but I find he tries to be fair and trying to control the House of Commons is on a par with trying to control a football match!! He is quite short but they call him Big John. He has been accused of bullying women but I do not know if that has been proven.
That is about all for now.
Love.
Sylvia xxxx
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Hello Susie,
I have been reading your posts about hair and nails, eyebrows and eyelashes. I found all of this for me personally as quite a slow process. I did not lose all of the hair on my head, but it was quite slow growing back and it was quite a time before I felt confident enough to go out without my wig.
As for my eyebrows and eyelashes, I did not lose them until I started the second three months of my chemotherapy treatment with docetaxel (Taxotere). They did grow back but the lashes are not as long as they were and the eyebrows are finer.
As for nails, I did not have much of a problem. I did not lose any, but a couple of toenails went a bit brown but soon became normal.
When I see women on television these days I get the impression that their eyebrows are false, what do you think?
I hope all is well.
Love.
Sylvia xxxx
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Hello Sylvia, Mary and all.
I've been quite busy the last few months, helping with the care and joy of my baby granddaughter. She is now 5 months. I watch her on Mondays and Fridays. Such a joy.
I've been battling arthritis in my hip that comes and goes. My knees are fine wtih my cortisone shots but nothing helps my hip. It hurts only briefly when standing and then once I'm walking it goes completely away. But starts all over again when I sit. More of an annoyance than anything.
As for HRT, I wish I had not taken it. It would be one of those things that I could definitely feel did not cause my breast cancer. You can only feel certain of this if you don't take it. HIndsight is 20/20.
I've a lot to catch up on this thread. To those of you that have been having crisis during chemo, stay the course it will get better. I was hospitalized a couple of times during my chemo. I'm now going into my 4th year NED. During those early months I didn't think I"d get here.
My eyebrows are back, but not with the usual bushy growth. The same with my eyelashes. The hair on my head was completely back after a year post chemo.
Big hugs to all and may this year bring us peace and most of all, free from cancer.
Val
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Hello Everyone,
As a woman of 63 I saw a period when HRT was supposed to be the best thing since sliced bread, then not to be touched with a bargepole and, no doubt, back again. My GP didn't recommend it and as I was already on a statin and medication for high BP, I was happy with that, although I had a difficult menopause.
An eyebrow tattoo is an interesting idea, Gill. I might look into that. Hope your next treatment is able to go ahead next week.
Sylvia, I didn't know that false eyebrows were a thing. How do they stay on? I only noticed a few years ago that my eyebrows had gone completely white and were thus pretty much invisible and started using eyebrow pencil.
Susie xx
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Yes, Sylvia, my sister begins her chemo late January and has her surgery next Tuesday early evening (Seattle Time). Radiation follows chemo.
She and I had a good talk yesterday, and she really is overwhelmed with work for her upcoming show. Not knowing how she will feel at the time of the show makes her hustle now. Fortunately, she has some good staff that will run the show if she can't or if she can do it only on a limited basis. Her show is in early March. I've helped her a couple of times in the past (yes, I flew to Seattle; though the show is actually held in Portland Oregon and we drive there.
I'm compiling a list of everything she might need during chemo. I've read dozens of articles and the more I read the more I add to the list. I may post it in a forum to get input from others to see is I have everything covered.
I'm doing fine; no side effects from Anastrozole that I know of, though I feel tired a lot but some of that can be attributed to age and the weather (we've had non-stop rain for the better part of three months; the sun shining only very ocassionally.
I'm not sure about Brexit and all the controversy surrounding it. I was in Finland around the time they decided to join the European Union and, later, adopt the Euro. Sweden refused to change their currency though the did join the EU. I've never understood why they wanted to join the EU because, to my way of thinking, they were giving up a good part of their sovereignty.
I don't really follow the EU that much so I don't know how it's working out for the other countries. But I think if the UK wants to leave the EU, they should be allowed to do so without undo interference from other EU members.
btw, I never realized people living in the UK are subjects, not citizens.
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Hello Sylvia,
I can well believe your aunt when she says that pie and mash can be a bit hit and miss. I've always had a deep suspicion of any shop bought or restaurant made pies. Puff pastry is a very effective camouflage for a multitude of sins. Your aunt obviously enjoyed jellied eels, but I doubt if I'll ever be tempted.
I eat very little meat, but do still eat fish. Even so, I think a vegetarian diet is healthier and I intend to return to it over the next few months. Michael is not so keen, but she who does the cooking calls the tune.........
I've been reading a lot about the vegan diet of late. It does seem that many people are now committed vegans and get all the nutrients they need. In the past, nutritionists and medics pushed meat as the best sources of protein and iron. Nuts are cheaper, healthier and cruelty free. Almonds are rich in iron, I also eat cashew nuts.
I don't like the behaviour of the more militant vegans either. The rise of the rent a mob mentality here and in the rest of Europe is disturbing - whatever their cause.
I take Atorvastatin, 40mg and Candesartan, 4mg. Despite a healthy diet, the bad cholesterol kept on rising. My blood pressure has been stable since taking Candesartan. However, I've needed to check it daily since chemotherapy began as it sometimes falls. When this happens I don't take Candesartan until the following day after another BP check. Our GP surgery is very careful with statins. I do know that some surgeries seem to hand them out far too freely and without justification.
I hadn't realised that breast cancer cells could mutate into other types. I've wondered about it though after reading some of the cancer stories on other threads. For example, more than one type in the same breast or in the other breast at the same time. I had just put it down to coincidence or sheer bad luck.
As for stick-on eyebrows, I wouldn't dare. Surely they must be obvious? I can spot false eyelashes easily enough and have never worn these either. I did buy some many years ago, but never took them out of the box - and this from someone who admits to being fairly frivolous at times. I guess I'm more conservative - (definitely small 'c' ) - than I thought. I shall look at this more closely after treatment is out of the way. Might be time for a change!
That's about everything for now.
Love,
Gill X
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Hi, viewfinder
As Sylvia says, we are free to post what we want here. What I usually choose to do is touch lightly on the areas of politics, mainly because things are so polarized in this country and I don't want to put off someone who might be coming here for support. That being said, the list of accomplishments by the President is quite something and also is something that will not be seen on the nightly news shows! And yes, it is unusual when a politician actually keeps his promises, nobody expects it. Also as Sylvia said, UK is having much the same sort of thing going on, many politicians posturing instead of doing anything useful. To think we have to pay these people salaries, sweet perks and then nice retirements!
Although I do have acupuncture regularly, I am not familiar with Acutonics, although I suppose tuning forks are used to give the same effect as the tiny needles, or perhaps they are used along with the needles. I do know that sometimes electrodes are applied to the needles once they are inserted, my doc tried that but I did not handle it well! Perhaps checking with her oncologist is the best thing to do.
I see your sis is having surgery tomorrow the 8th, I wish her the best of outcomes.
Talk to you soon, love,
Mary
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HI, Sylvia
I want to thank you and Raymond for your enduring friendship and generous spirits, and for making this thread possible.
Sis-in-law and I will go to the city this afternoon and spend the night since we have a very early morning flight. I have been fighting a sinus issue/quasi-cold/not flu since last week, probably caught because of all the close contacts with people over the holidays, and also I often have trouble with the wild fluctuations in the weather. I did check with my doc last week, because of upcoming trip. He gave me one of his special shots, which is mostly steroid, with a touch of antibiotic. The steroid gives some energy and helps with congestion, I suppose I will go though I am not 100%. Doc thinks once I am in nice, warm, stable weather I will feel much better. In the meantime, I am packing and making quite a mess of it, but the nice thing is tonight I will be in a room and can throw unnecessary stuff in the car and leave it.
I still have no diagnosis on my other, ailing car, I am afraid it might be serious.
As to the remodeling of the 2 rooms, I don't have much patience with it all, I'm afraid. My contractor called last night asking questions I thought had been answered last week. At this point I just want it finished and the details are not seeming very important. Not my cup of tea!
So you live in a good-sized city and are quite close to a large one. That makes things convenient. I like living rurally but it does seem to require a lot of driving. Cars are important here! Very nice to be so close to a very good hospital.
As to HRT, I can't go back in time and undo it, but I do think I was left on them too long. I did question it every year, and was always reassured that they were so beneficial. I think hormones are powerful things and affect more than we know. My problem was that I had constant bleeding because of non-cancerous tumors on my uterus. Instead of doing a lengthy surgery to remove them, the surgeon removed the whole thing. In hindsight, it would probably have been better to do the surgery and leave the uterus, which also has a lot of reasons for being where it is.
Politics, yes. I am leaving for a sunny isle, so will probably pay no attention to it for a week or so. And probably won't miss much. I do find it amazing that so much has happened, as in viewfinder's list, that most know nothing about because the "news" is just repetitive junk for the most part.
I am off, and will check in while gone, wish me good health!
Talk to you soon, my friend, love,
Mary
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Hi, Susie and Gill
I have thought about the eyebrow tattoo too, mine are quite sparse since chemo. I have checked it out, the esthetician makes tiny cuts in the brow, and then dye is put on to sink into the skin. Sounds painful to me, I haven't got up the nerve yet. My sis-in-law has the tattooed eyeliner which looks very good. She puts on temporary eyelashes, or has them put on before a trip. The upshot is that when she wakes in the morning she looks great, I look like a plucked rabbit, because I am unadorned and have to add any embellishments later.
I don't think I could be without a little meat and fish. There are days when I don't eat any, and it's fine, but eventually I get a very hollow feeling that is only satisfied by very dense protein. Nuts just don't do it. I can eat lentils and split peas well, but the legumes are very hard for me. I like them and I can eat small amounts, but I really can't tolerate enough of them to satisfy my protein needs.
Gill, my hair started to come back while I was on Taxotere. Apparently it is easier on follicles than A/C.
I better get busy, talk again soon,
Love, Mary
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Hello Val,
Many thanks for your recent post. I can understand how busy you must be with your new baby granddaughter.
It seems as though so many people are dealing with the pain of arthritis in various parts of the body. Have you had the hip checked out to see if there is any osteoporosis? I vaguely remember reading some time ago about a connection with chemotherapy and later developing arthritis.
Take your time catching up on this thread, but it is worthwhile doing as the posts are always interesting and informative.
Thank you for sending your words of encouragement to those going through treatment. Those words are very important.
That is all for now. Take care and keep well.
Love.
Sylvia xxxx
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Hello Susie,
As for eyebrows, I do not really know what women get up to. Not that long ago, in a Superdrug store, I saw a section had been set up where a young woman was doing something to women's eyebrows that was called threading. I do not know if that is what Mary is describing.
I noticed in your post that you said you are taking statins and a medication for high blood pressure. I was wondering how long you have been on them and whether you have had any side effects. I know that the medical establishment seems to want anyone over 40/50 on both of these medications. They seem to change the numbers as well. I do wonder about this. Cholesterol is made in the liver and blood pressure varies all the time. Where are these numbers plucked from and who thought of good and bad cholesterol? It is a bit like Brexit. The Leave vote won the referendum and leading up to the vote it was leave or stay, but suddenly someone started up Hard Brexit, Soft Brexit etc. The last one I heard was Smooth Brexit!
I hope you are having a good week.
Love.
Sylvia xxxx
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Hello viewfinder,
I was interested in your latest post of January 6th.
I was wondering about the list you are compiling with reference to your sister's chemotherapy treatment at the end of January. What exactly are you putting on that list? It would be interesting to put it on this thread and the TNs. These two are the most long lasting threads and get a lot of views. I would be very interested in reading it because the only way we progress in all of this is through information. My own view on getting through chemotherapy is that you must make sure you keep well hydrated, take rest when you feel you need it and have gentle walks, keep strong and keep looking forward, even when you have upsets. Eat healthily, avoid raw foods and shellfish, because of the fear of infection, stay away from other people with colds etc., keep away from public transport and crowded places, keep away from GPs surgeries, full of sick people! These are a few of the things that I did.
What kind of articles have you been reading?
I think a good book that people could read as they go through treatment is one of the very latest, entitled The Complete Guide to Breast Cancer – How to Feel Empowered and Take Control by Professor Trisha Greenhalgh and Dr Liz O'Riordan, 2018 – expert doctors and breast cancer survivors.
I have just bought a book entitled Snowball in a Blizzard – The Tricky Problem of Uncertainty in Medicine by Stephen Hatch, first published 2016. "Like a conversation with a doctor you would trust with your life" - Ray Tallis.
Brexit continues and it is such a muddle.
That is all for today.
Love.
Sylvia xxxx
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Hello Gill,
I think with our nutrition it is important to enjoy our daily food and not to make it a chore. I did read once that we should not make major changes in our diet when we are going through cancer treatment, but I am not sure I agree. I just think you need to make the changes slowly. I think we all have different needs. I have not eaten meat or poultry for many, many years, but I do feel the need to eat some fish, but I only have frozen wild salmon fillets and North Atlantic frozen haddock fillets. I do have some frozen whole North Atlantic prawns for iodine, but the set of regular daily nutrition is fruit and vegetables, nuts and seeds, beans and pulses and soy yoghurt and soy drink (unsweetened).
It is best to let Michael do what he feels he wants to. Raymond and I are are lucky that we both want the same nutrition, especially as I am cooking it! We do have tempeh and sauerkraut, but these are an acquired taste.
That is about all for today.
Love.
Sylvia xxxx
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Hello Mary,
I hope that by the time you read this you are relaxing in some nice warm climate and that you can forget the repairs to your farmhouse and your ailing car.
Brexit drones on and yesterday and today Theresa May has been hosting drinks parties in Downing Street to try to buy off MPs who have said they are going to vote against her proposed Brexit deal. The vote will be by Parliament on January 15th and she is expected to lose. Never say never. I do think it is a bit much that taxpayers' money is being spent on drinks to buy votes.
That is all for today. Enjoy your break.
Love.
Sylvia xxxx
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Hi Sylvia,
Below is the list I sent to my sister. It's nicely formatted but I am not sure how it will look because the site formats poorly, if at all. If anyone wants a formatted copy that they can print out (word or pdf format), pm me with your email address and I will send it. My browser of choice is Chrome, but when I spoke about this problem with the mods, they said to use Firefox, so that's what I'm using for this post.
I've spent hours researching and putting the list together but I've never been through chemo so the list is not based on personal experience. For those who have been through chemo, please let me know if I've left anything out and if you have items that should be added to the list. I hope it is helpful.
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CHEMO TIPS
The following are some suggestions I gleaned from cancer articles and participants in the breastcancer.org forums. Check with your doctors about some of the meds taken orally, etc..
If your breast surgeon hasn't mentioned lymphedema, ask if you will eventually get some education about it.
Ask oncologist about: Peripheral neuropathy
Ask about Claritin (which many take because it helps with pain during chemo)
Tylenol (painkiller) or Ibuprofen (ask your oncologist which is preferred)
Bring to Chemo treatmentBring water and snacks including a small sandwich to chemo treatment; a blanket; laptop, phone or book. Don't drink too much water before treatment so you don't have to go to the bathroom too many times.
People recommend wearing slippers around the house, not going barefoot
Oral hygiene- Biotene mouthwash - helps prevent/treat sore mouth
- Extra toothbrushes (extra soft bristle)
Miscellaneous items
- Two thermometers (since tracking temp matters) - digital thermometers may be easiest.
- Lip balm
- Medical gloves (for those who help)
- Kleenex
- Squirt bottle to keep by the toilet (perineal irrigation bottle, eg Medline Cleansing Bottle available on Amazon)
- Flushable moist wipes
- Purell-type hand-sanitizer - non-scented
- Clorox Disinfecting Wipes (for bathroom)
- Sunscreen (SPF 15+)
Moisturizers - use on hands and feet every day
- Unscented such as Aquaphor
- Or Eucerin Healing Repair
Nausea - patients advise preventing nausea rather than trying to treat it once it happens
- Anti-nausea meds - pill that dissolves in mouth (under tongue)n- Get RX from doctor
- Avoid anti-sickness bands
- Keep small bucket or small plastic bags handy
Dehydration
- Drink lots of liquids, especially water
- Popsicles, sorbet and Italian ices
- Ayr Nasal GEL
- ACT dry mouth (or similar) lozenges such as Oracoat Xylimelts (these and other things can be ordered on Amazon if you can't get them locally)
- Some people ice hands and feet if needed
Constipation - these cancer meds can do a job on your stomach. I can't emphasise enough to get this stuff!!
- Eating fiber days before chemo can help prevent/lessen constipation. If the doctor says okay, take Miralax or equivalent day before
- Fleet mineral oil enema
- Glycerine suppositories; hemorrhoid suppositories
- Colace, Miralax or Senekot-S
- Foods: activia yogurt, walnuts, pecans, almonds, dried apricots, prunes, prune juice
Recommended for diarrhea
- Imodium
For Caregivers
- Give contact numbers of doctors/oncologists (daytime/nightime) to caregiver(s). Make sure you fill out and sign an appropriate document authorizing caregivers to speak to your doctors.
- Keep place as germ free as possible, especially bathroom
- Note to caregivers: Rather than asking what symptoms a person is experiencing, check if there's anything you can do to help.
Breast cancer freebies: https://breastcancerfreebies.com/
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The Chemo tips actually formatted pretty well, not perfect but at least it formats in Firefox. I'll have to use Firefox if I want to format in this forum. It even looks okay when I check the post in Google Chrome.
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Excellent additional tips, Sylvia. I will update the list after I see if other people add additional tips. As you can see, my emphasis was on things to get and a few questions to discuss with doctors. But I think some points on general care during chemo would be beneflicial.
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Hello, Sylvia
I have been on statins and BP meds for simply ages -- I'd be surprised if it's less than 15 years. I've never had any problems with them though I have friends who've tried statins and given them up, claiming al sorts of side effects. Occasionally additional claims are made for the miracle qualities of statins, which I guess we have to take with a pinch of salt.
I think that threading is a way of plucking eyebrows, which is the opposite of what I want.
Susie xx
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Argghh, I just wrote a really long post to you all and managed to delete it! Forgive me for summarising!
Happy New Year to one and all!
I wanted to get involved in some of the interesting discussions that have been filling the pages of this thread recently.
On vegan-ism. Surely many aspects of this "new" trend towards meat/dairy-free eating are to be applauded - but everyone comes with their own worries about certain illnesses, often based on what has been prevalent in their family, and, in that respect, I'm not convinced that going dairy-free would be best for me. My grandmother died young of bowel cancer, and this has always been the cancer than my dad's side of the family has been most concerned about. Research suggests that dairy has a protective effect against colorectal cancer(and in fact pre-menopausal breast cancer) although it is not clear if this is due to something specific in the milk or the high amount of calcium. I was directed towards the following link by an epidemiologist friend.
https://www.wcrf.org/dietandcancer/exposures/meat-...which I found interesting in what it says about meat and dairy. If the men in my family had a strong history of prostate cancer, I might think differently about milk.
Strangely, the report does not have too much to say on jellied eels! (I have eel occasionally when down in Aldeburgh - I rather like it actually!)
My understanding (which may well be erroneous) is that dairy milk is the most bioavailable form of calcium (i.e. the most easily absorbed in the body), and so it is good for people with osteoporosis. Again, this is something that runs in my mother's side of the family and I am thus concerned about for myself.
It is indeed hard to unpick all the convoluted strands that make up dietary advice! I guess the worst thing we can do is become too stressed about it all - and , surely, eating more fruit/veg/legumes/nuts/seeds must only be a good thing. I must try harder on this front!
Anyone considering eyebrow tattoos, you might want to google Micro scalp pigmentation for eyebrows. It is a sort of "medical" tattoo: but much less painful and invasive than normal tattoos.
MSP is mostly used for scalps,and I have had it done to camouflage the parts where my hair is thinning (I've always had very fine hair, but it has got noticeably thinner since having my children). It basically gives the impression of "hair just starting to grow in the hair follicles" and has helped to lessen the contrast between my hair and pale scalp, thus making it look thicker overall. I think it would work very well for sparse eyebrows, and may recommend it to my mother if hers do to grow back well.
My mother continues to do well on the paclitaxol-she is just much more tired than normal and gets a bit of bone ache from time to time. She has just completed her 6th infusion.
I've been suffering with a rather embedded sinus infection for about 6 weeks now, so haven't been able to help my mum as much. That said, she hasn't really needed much help. Any advice on sinuses? Antibiotics haven't worked and am now reverting to "at-home" remedies: resting more, steaming and drinking as much as possible.
Gill- good luck with your next round of chemo, which starts on 10th I think (but don't worry too much if it delayed. Over the course of my mother's chemo, there have been a number of delays,and the oncologists have always said it does not really affect the efficacy of the drugs).
Anyway, thank you as ever to all the nice people who keep this thread going. I will pop in from time to time..In the meantime, I hope you can all keep your heads down amid this Brexit craziness and enjoy the first snowdrops and aconites that are starting to appear..
love
Flora x
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Hello, Flora,
Glad to hear that your mother is doing well. Was the sixth her last cycle? Six cycles does seem to be the norm for BC. I heard a woman in the Chemo Unit one day say that it was her 27th cycle! Don;t know what type of cancer she had. I advise people that if they're going to get cancer then they definitely go for breast.
Happy new year.
Susie xx
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Hello Flora,
I was glad to read that your mum is doing alright on paclitaxel (Taxol).
As for vegan diets, I think people should be left to decide what they want to do. What we do not want is vegans out on the streets or on people's farms waging warfare on those who do not agree with them.
We have enough information about how important fruit and vegetables are, along with nuts, seeds, pulses and beans, as well as whole grains. We are also told that oily fish is good for us. In the West it seems that in general diets are too high in meat, poultry, dairy and especially processed foods with little nutrition in them and not much fibre. It is up to each individual to decide what they are going to eat. I do not eat any meat, poultry, dairy foods or junk processed foods, and the only animal foods I have are some wild fish and prawns. On this thread over the many years we have discussed nutrition, the Rainbow/Mediterranean diet and really have decided that a little bit of everything in moderation is probably alright.
When it comes to research we have to be careful about who is financing it and we have to remember that the meat and dairy industries are mighty powerful.
I have not eaten any dairy products for a very, very long time. I do remember a conversation I had with my breast cancer consultant surgeon/endocrinologist back in 2005/6 and she told me that she thought dairy products were one of the probable causes, risk factors in breast cancer. She said it was all to do with hormones and growth factors (IGF) in cows. It makes sense because milk is made for calves, not humans.
It is also a well known fact that there is no osteoporosis in countries where dairy is not consumed and that when people come to the West and start on dairy products they tend to have breast cancer and osteoporosis.
I have read in the past that the calcium in the milk etc. from cows is not absorbable by humans.
It is up to us to make our own decisions and live by them. I would not take the calcium carbonate that is what seems to be prescribed on the NHS. Calcium tablets need to be made up of various other things, such as vitamin K, vitamin D and magnesium, or these need to be taken with the calcium. I happen to think there is a link between prostate cancer and breast cancer. They are both hormonal.
As I have said many times, each of us has to do what we think is good for us but not preach it to others.
After chemotherapy I think that you have to give the body time to recover and this can take time. Eating a healthy diet will help your hair and nails to grow back, and I would think that trying to avoid negative stress would also help.
That is all for now.
Love.
Sylvia xxxx
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Hello Sylvia and Susie,
Susie- my mum has had 6 out of 12 planned Paclotaxol infusions. The original plan was to make it up to 9 and then take a view from there.
Glad your hair (and life generally) is starting to get back to normal.
Sylvia, I hope I didn’t come across as being preachy about diet. I am in no position to preach, as I am the first to admit that I am thoroughly confused re dietary advice. I visited three different dieticians on my mother’s behalf and found they disagreed more than they agreed!
That said, I just wanted to suggest that we all approach the subject of diet with our individual preconceptions and health concerns.
When bowel cancer was my main concern, I used to look into nutritional advice about that( dairy seems to come out well here even if meat doesn’t).
Now triple negative breast cancer is of concern, I look into that, but since there seems to be little specific advice, I focus on upping my mum’s fruit and veg intake - this being something I can usefully do for her. I cook a lot of veg stews and curries-something which has been pleasurable and educational for me( who was previously a bit of a meat and 2 veg type cook!)
The point I was making about approaching dietary advice with one’s own particular health concerns was driven home very clearly to me during a conversation with my mobile hairdresser!
He’s a smoker( about ten a day) and I asked him why he still smoked when he seems so health-conscious in so many other ways( is teetotal and seems to exist off raw broccoli!) He replied” I don’t want to get Parkinson’s”. I was amazed at his answer, but he went on t say that smokers are half as likely to get Parkinson’s as non-smokers. We looked this up and indeed this is the case!
Of course, in my opinion (and I’m sure many others) this does not trump the many known risks as regards cancer/heart/lung disease, but it does show that things are never black and white. My hairdresser’s preoccupation, through his family history, is Parkinson’s, so that is what he chooses to focus on whenever following dietary/smoking advice( though I suspect addiction plays its part too!)
All very interesting anyway... what will we discover next?
Hope everyone’s well
Flora x
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