Calling all triple negative breast cancer patients in the UK
Comments
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Rosiecat - so sorry to hear about the tough time you are having with Taxol. My relationship with Taxol was most unpleasant - and in the end I only had 70% of the recommended dose. You seem to be having a much worse time, and I truly wish you better days soon. I will be curious to hear what your oncologist suggests in terms of completing your treatments or whether they will reduce your dose?
Hope you see improvement very soon - take it easy!
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Maryna - March 7th is not too far away!! I have a friend who had the rotator cuff surgery after breast cancer and she was glad that she did - it was not easy for her, but she was relieved to be free from the ongoing pain of the torn ligament. You have suffered a lot with your shoulder and if the surgery helps then it will be well worth the inconvenience and discomfort of the surgery. You are a strong person with a positive outlook on life, so that will be a big help during your healing process.
My husband is very slowly feeling a little better - the outstanding issue is his left arm and hand which is not doing so great - and I am hoping that with time and eventual rehab (it is still too acute to start physio) he will have as good an outcome as your brother, We are waiting for an MRI to check out the spinal cord - he has considerable pain, but finds the drugs upset his stomach a lot - so he is trying to go without (as of today) and using lots of ice instead. We will see how that goes?
Wishing you peace of mind as you prepare yourself for the upcoming surgery - I wonder if you will still be able to use the computer with the sling on? I guess just one hand and much slower! Look after yourself, Mary.
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Sylvia - so relieved to hear that you and Raymond are slowly improving. And it is so great to read your ever encouraging and informative posts again. Please take care of yourself.
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HI, Adagio
Thanks for the encouragement! I need it, I am freaking myself out a bit thinking about all the things I'm going to have a hard time doing after surgery. Living alone is making it hard. I have someone to stay with me the first 2 nights, after that will probably be hit and miss. Not exactly sure what to expect, trying to plan ahead anyway. Many things I will be able to do, but very slowly. Oh well, won't have much else to do anyway, right?
I'm glad your husband is progressing, my brother's recovery was gradual as well. The part of the spinal cord he injured affected the arms and legs the most, slowly the feeling and function came back. He also had a lot of pain for a while, he didn't want to do the pain pills but it was a necessity. Now he has no pain at all 6 months later. He recommends the physical therapy, and now that he is so much better he continues on his own with treadmill and weights. I wish your husband the best results, he had a very scary accident!
Take care, love
Mary
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I live alone and actually preferred that after surgery. My brother-in-law and nephew insisted on coming over and cooking for me when I got home from my lumpectomy but I was feeling so wiped out and massive, painful bruising was developing and I couldn't wait for them to leave, after which I collapsed, fully-clothed, on the bed!
People mean well but I'm like a wounded animal, who likes to be left alone when I'm ill or in pain.
Susie xx
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Susie - I know exactly what you mean about wanting to be left alone, I am very much that way a lot of the time. I think that is OK as long as we can ask for help when we need time
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Dear Mary
My best wishes for your surgery.l know you are strong and everything will go well.
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Hello viewfinder,
Thank you for your PM. Of course I perfectly understand.
Keep us updated when you can on your sister and you take great care of yourself.
Love.
Sylvia
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Hello everyone,
It was good to see you all chatting with one another.
I wanted to send best wishes to Nancy53 in Manitoba, Canada, and say I hope all is well with you.
To Loveandlight (Sarah) in London, UK, if you are still looking I hope all is well with your mum and that you are also keeping well.
Love.
Sylvia xxxx
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Our Dear Sylvia
Thanks so much for popping in. I was saddened to read you were taking off from the thread... I hope you change your mind, for selfish reasons.
You have been a beacon for me on this trip I and so many have been forced to take.
I'm fine, going on my 4th year since dx. Ailments? ofcourse my arthritis is debiliating.
I am enjoying life, each day at a time.
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Hello Val,
It was so nice to hear from you and thank you very much for your kind words. It makes it all worthwhile to know that the thread has helped people.
I shall never really leave the thread but I am going to try to have a bit more free time to myself. The thread has become so much a pert of me over the years and I have found it very enriching to talk with so many different people from all over the world. This thread and Calling all TNs has been so constant over the years.
Congratulations on your fourth year anniversary since diagnosis.
I think for all of us the best way to live is to take each day as it comes and enjoy it to the full.
Yes, there are side effects from the treatment, but we all manage to cope.
Please keep posting and take care of yourself.
Love.
Sylvia xxxx
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Is this new news?
This Mayo Clinic article from their newsletter is dated March 1, 2019. You have to subscribe to read the whole article. I am not a subscriber.
However, the first few paragraphs speak about the promise of the hormone estradiol (Estrace) for treating triple-negative breast cancer.
"Recently, Mayo Clinic researchers found that the hormone estradiol — available in drug form as Estrace — may have a new use in a certain subset of women with triple-negative breast cancer."
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HI, viewfinder
I had not heard this before, thanks for posting.
I think this would be great if this would help, but if it's necessary to check the genetic makeup of the tumor I don't see how it would work, unless one has a tumor. If it can be discovered in a blood test that would be doable. (I didn't subscribe either, so didn't see the whole article.)
When I was diagnosed I was using Vagifem, 1 tablet twice weekly. It is for post-menopausal women who have trouble with vaginal atrophy, and I believe it is another form of estradiol. I was told to discontinue it immediately. Now I see there are different schools of thought on that, some doctors think it is perfectly safe for post-menopausal women to use hormone in this form, others are still abiding by the FDA warning of no hormonal drugs, at all, for anyone after BC diagnosis. The doctors who find it a positive thing to prescribe think it is more possible to affect women who have had hormonal receptor positive BC, but are not even sure about that anymore. I did ask my oncologist about it, she said it was okay with her if I asked my Gynecologist for it at my annual gyno appointment, and then had only a very light dose. In the meantime I am supposed to be trying other non-hormonal options; I have done that but I have found none of them to be of any lasting value.
Talk to you later,
Love, Mary
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Hello everyone,
After a very difficult start to the week, I've decided that I will complete the Taxol. Tomorrow's my final treatment and I'm fully prepared for the consequences. In the end, I want to know that I've done my very best. The dilemma has always been that metaplastic cancer carries a very poor prognosis and is generally chemotherapy resistant thus the maximum dose is given at three weekly intervals. This is often avoided in women of my age as the risk of heart damage is too great. My GP tested me for high cholesterol and high blood pressure many years ago as she'd noted my family history. Statins and BP medication have worked so well in protecting my heart.
I intend to answer your posts and thank you for your support.
For anyone about to undergo or undergoing treatment, please don't worry about having the same reaction as me. Apparently my very healthy body has fought the poisons tooth and nail, turning me into a battleground. Triple negative cancer responds extremely well to chemotherapy and if I'd been allowed to choose (!) I'd go with TN every time. My experience shouldn't be considered the norm and it's not a good idea to compare.
Just hope to get my sense of humour back soon. I've become quite snappy with Michael lately and he doesn't deserve it. Like Susie, I often feel the need to be on my own until my body heals itself.
Thank you for your positive thoughts and prayers. Mary, thank you for lighting a candle for me. I remember everyone on the thread in my prayers. As I haven't been able to attend Mass for a while, Michael has acted has surrogate candle lighter.
Much love,
Gill X
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HI, Gill
I just wanted to say I'm glad you made a decision, and are okay with it. May this infusion be much easier, fingers crossed!
Love, Mary
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Hello Gill,
Knowing that it's the last cycle will help, I hope. I remember having the bad taste in my mouth again and the sore throat and thinking, well at least it's the last time.
Cancer is hard for spouses and other close family members. They are so afraid of losing you and feel so helpless that they may fuss infuriatingly, or they may withdraw into their own depressions. I'm sure Michael understands if you're not all sweetness and light.
Susie xx
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Hello viewfinder,
I read your post with interest. I am going to post a page from my BMA book of medications etc. so that you can read about estradiol. which comes under many different brand names and is certainly not a new drug. It is certainly not anything that I would contemplate taking.
On the thread I have always said that I have always been positive about being negative in receptors. After I had finished my standard treatment and had reached NED I was very glad not to be on any kind of drug and was free to build up my immune system through nutrition, physical and mental exercise etc. I was so glad not to have endure the five to ten years of nasty anti-hormonal drugs that those with positive receptors had to go through.
Of course drugs make money and there will always be a search for more and more and drugs and re-targeting old drugs.
In the past I have read about researchers wanting to try to change triple negative receptors to positive ones and treating them with anti-hormone drugs. In the past I have also read about patients on anti-hormone drugs ending up with triple negative. It is all a bit Frankenstein as far as I am concerned.
I am wondering what the subset of patients is.
Wishing you and your sister well.
Love.
Sylvia xxxx
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Hello Gill,
I just wanted to send you best wishes that all will go well tomorrow. At least it is the last infusion and you can concentrate on strengthening your immune system and getting back to a normal life.
As Susie said, it is very difficult for the loved ones of cancer patients to deal with all this and they will have a lot of fear and anxiety. Raymond was of enormous help to me through all my days of cancer journey and for all the years after that during check ups.
During treatment, patients often need time to themselves and those close to them also need time away from the patient. From the beginning of my treatment I accepted the offer from the oncologist to have Hospiscare nurses visit me, even if it was only for chats. I also encouraged Raymond to join a group of carers at Hospiscare and to go to their meetings. It was good for both of us.
Thinking of you and telling you to remember to drink plenty of water and to keep looking forward with optimism.
Love.
Sylvia xxxx
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Hello Mary,
I bought the March edition of What Doctors Don't Tell You with the front page entitled The food that reduces your breast cancer risk by 64%. I have just looked through the magazine but have to go back to read it all in more detail. Mushrooms and the vegetables of the cabbage family, especially broccoli have been said to be important in the prevention of breast cancer for many years. However, there are no magic bullets in my opinion.
I have also received the latest email from Chris Woollams and have ticked off certain parts to look at in more detail.
1. How to stop cancer progression? - Cheap compounds that can increase your survival.
2. Research says this compound slows progression of Alzheimer's and dementia - Reducing the progression of dementia.
3. An amino acid to reduce blood pressure and heart attack risk - Amino acid in foods reduces blood pressure, heart attack risk.
6. This month's Cancer - Overview - the truth about melanoma and skin cancer.
That is about all for now. We are getting some very strange weather here with weather that is too mild for February.
Thinking of you.
Love.
Sylvia xxxx
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With reference to carers, if you have a Maggie's near you, then they are there for family as well as patients. When my husband was dying of oesophageal cancer, I accompanied him to relaxation sessions there. I know that husbands and wives would be welcome, maybe while their better half is in the chemo unit, for a hot drink and a chat.
Susie xx
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Hi, Sylvia
I thought the article that followed the big front page on WDDTYwas a bit disappointing, as I said before, I'm sure we all know that the cruciferous vegetables are good for us, as are mushrooms. But I ate those things before I developed BC, too. Perhaps not enough of them, the experts might say! I do like the magazine, I like the largish print, and find most of the articles interesting.
I do find Chris Woolams's posts on repurposing old drugs interesting, it causes me to remember that while I was going through BC treatment, my MO and nurses at Cancer Center recommended taking Loratidine (Claritin). I questioned why, and they said it just helped generally, they did not offer a good explanation. I learned from another patient it was also supposed to help with the leg cramps that often happened after receiving the Neupogen (filgrastim) injections. I did take it sporadically. I also had very runny eyes while on Taxotere but it did not help with that, even though its' main purpose is supposed to be helping with allergy symptoms. A nice thing about Claritin, it has few incidences of side effects according to reports.
The compound that slows progression of dementia/Alzheimer's in another post is found in meats, and also taken as a supplement. It is acetyl-l-carnitine. There is info in this post apparently from an old study (1991) that shows people who did take this supplement (unknown dose) showed a large increase in their slowing the progression of disease. I suppose it was not interesting enough results for pharma companies because it is probably also a cheap compound, since it is a 28-year old study.
The amino acid to help with lowering blood pressure and heart problems post is next, it is l-arginine. It is also found in many foods, such as pulses (legumes), white meats, soybeans, peanuts and pumpkin seeds, and chlorella and spirulina. There was also a link under that article about Vitamin D. Many pages on Vitamin D there, including this one on "2 Studies show importance of Vitamin D with Triple-Negative Breast Cancer.
ttps://www.canceractive.com/article/two-studies-show-impo...
I wish he would post dates on the studies he mentioned, hopefully they are somewhat current.
Much more to comment on, be back later.
At least you have mild weather, here we are getting freezing rain this morning, there are many accidents happening as people try to get to jobs on icy roads. Schools have been cancelled again.
Love, Mary
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Hi Sylvia,
Thanks for you reply about estradiol. Unfortunately, this site doesn't let you enlarge inserted graphics like most forums do, so I downloaded it and can enlarge it on my computer but the text is a bit fuzzy.
That's a very interesting point about not wanting to be on any kind of drug long-term.
I had to chuckle when you used the term "Frankenstein." I needed a good laugh because I had a very bad night (anger, crying) after reading my sister's upcoming schedule that she texted me.
She's already had two surgeries and some chemo treatments. She had extremely bad body and bone pain for several days, couldn't sleep at night, but the pain is finally subsiding.
Her oncologist told her she will need more chemo, then a third lumpectomy, then radiation!
Why the heck don't they just give her a mastectomy?!!?? Won't it spare her from going through some of this?
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Hello viewfinder,
Thank you for your latest post.
I know you are going through a lot of anxiety as your sister goes through chemotherapy and all of here can understand that. I am glad that I managed to make you laugh. I think that laughter is very good medicine and that it is in short supply in our very dangerous world.
I was sorry to read that your sister is having bad bone pain. I know from this thread and various posts that the Neupogen drug to help boost white blood cells does have this side effect. Let us hope the pain goes away soon.
I must admit that I was really surprised to read that your sister's oncologist is speaking of a third lumpectomy. I really have never heard of this. I know from a neighbour here that she had two and was in the clear, but she was told that if the second lumpectomy had not been clear it would have had to be a mastectomy.
I do hope you will be able to find something relaxing to do through Friday and the weekend. You need some relaxation. I do not know if you like gardening but I find it very therapeutic. I have not done any in the past months but I was reading up about doing certain jobs in the garden as a way of tidying up after our autumn and winter. It says that a little bit of gardening will energise you and lift your spirits. Do whatever you enjoy. If you want to look at some real 'nuttiness' have a look at the way our archaic Parliament works. It is complete chaos and the best pantomime in town. They just drone on and on about nothing really and last night they were having votes on amendments connected to Brexit. It was an unbelievable sight and so embarrassing. I was comparing it to the no-nonsense, business like atmosphere in the American corridors of power in the questioning of Mr Cohen. We do need to modernise here. We need a Republic.
Do you do a lot of reading? If so if all else fails read an enjoyable novel.
Thinking of you.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post.
I have spent some of this afternoon reading the Chris Woollams email sections in detail. Because of this I have all that you have said about the various sections fresh in my mind. I was very interested in the article on antihistamines and the importance of arginine-rich foods for their production of nitric oxide.
I was also very interested in the section about acetyl - l - carnitine and how it can reduce the progression of Alzheimer's or dementia. As you know, I do not eat any meat or dairy products so that made me wonder, but I do eat regular amounts of North Atlantic prawns on the shell. From time to time now I do eat some French goats cheese. I buy the French log type.
This afternoon I have also read the complete article, An overview of melanoma and skin cancer - symptoms, causes and treatment alternatives. It is all very interesting.
Throughout everything that I have been reading the importance of vitamin D is emphasised, but I think we all know that. I have taken 4,000 IU almost daily since about 2004.
I also read the overview of immunotherapy drugs - comprehensive review Cancer Active Immunotherapy.
We cannot print out all the details of these articles so anyone that is interested should join up to Chris Woollams' regular emails.
I do hope you have a good end of week and a relaxing weekend.
Love.
Sylvia xxxx
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Thank you Sylvia for the enlarged graphic.
I guess, to be honest, I'm going through the anger stage of the five stages of grief. I'm just going to let myself be angry for a time but not let it linger.
I do watch Sky news live via my Roku player. The way Parliament conducts itself fascinating to me. They shout a lot. However, I don't think anything could be more nuttier or embarrassing than the Cohen circus that went on yesterday. I watched most of it until it turned my stomach and had to turn it off. In fact, the entire way congress is acting totally embarrasses me!
Yes, I will be busy this weekend. Starting this Saturday through Monday is my sister's association's 2019 Fall Market. I do the social media for it. Forgive me if I previously mentioned it, but someone sends me pictures with captions from the show by email (which is held in Portland, Oregon). I edit and upload them to Instagram and Facebook. I love photoshopping photos and creating graphics. This is the first time my sister is going to miss a show in I don't know how long.
I am going to call my sister and ask why a third lumpectomy is recommended instead of a mastectomy.
I do hope everyone has a lovely weekend!
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HI, viewfinder
I am curious too, why the docs would recommend that your sister have a 3rd lumpectomy instead of a mastectomy.
I hope you have an enjoyable weekend doing the graphics for the Fall Market!
Love, Mary
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Hello all,
Gill, I will be thinking of you today as you have your third Taxol treatment. You have obviously weighed up all the different factors and made a balanced, considered decision, and one supported by your oncologist.
I do hope you can gain some peace of mind once it is done, knowing that you completed the prescribed course.
And I do hope the physical symptoms gradually abate.
Mary, I wish you luck with your rotator cuff surgery. I hope it will relieve the pain you’ve been having.
Nothing that compares in any way to the above, but I’m still in bed after four weeks of full-on flu and chest infection. The children have also been ill on and off during this time. I have been shocked at how hard one can be hit by flu! Definitely getting the flu jab next year.
The positive to this is that I have discovered-and become addicted to-BBC’s Call the Midwife! Have any of you seen it? It started five years ago and is still running, but this is the first I have seen of it.
It is quite wonderful- dealing with all the dramas that accompanied birth in the 1950s( unmarried mothers; shotgun weddings; forced adoptions; outbreaks of TB and typhoid in the crowded East End) in an honest and humane way. Difficult scenes are interspersed with heart-warming stories, and all set against a backdrop of the cosy, reassuringly old-fashioned routines of a nunnery where nuns and midwives live and work together, serving their deprived community. Highly recommended and good escapism..
Love to all
Flora x
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Hello all,
Flora - I have watched all the Call the Midwife and it is truly an escape and a bit addictive but also eye opening. Especially interesting for me since I am a British trained midwife and I worked as a community midwife although many years later than the bbc's series.
Sylvia - I went to see my doctor (new one) yesterday to ask for a bone density requisition and she obliged. I once again got the rundown on how important the drugs are for osteoporosis - she recommended Prolia and said it was not a bisphosphonate - so my goal is to do the reading on this before I go back to her to discuss the results of the next test which will be in April or May.
Sylvia and Maryna - I have been reading about repurposed drugs on preventing recurrence of cancer, and am currently reading a book called "How to starve cancer" by Jane McClelland from London, England. It is a very large book and she goes into great detail about cancer pathways and what fuels (glucose , fat , protein , glutamate) the different cancers . She talks a lot about various supplements and older drugs which help block the pathways of the cancer. While she claims that chemo kills the cancer cells, it does not touch the stem cell which is what carries the cancer . The book is technical in many ways, but she also tells her own story which is quite fascinating. I am only one third through the book. The work she has put in to treating her cancer is huge, Have you heard of Care Oncology Centre? I have also bought Sophie Sabbage's recent book called Lifeshocks, but have not started to read it yet. This is more about how our various life experiences impact on our journey with cancer.
My husband had an MRI yesterday to see if there is any spinal cord injury. He is very, very slowly improving although still suffers a lot of pain and numbness/tingling in the left hand and arm and has minimal use of it.
Best wishes to all going through treatment - it is a tough struggle, but it passes - look after yourselves and let others do it too.
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Mary and Sylvia, my sister clarified her text to me the other day. What she is going to have is a re-excision.
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