Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio,
I was just looking through the active topics and I saw a thread entitled
Itching , rash 5 years after rads??.
I read some of the posts and thought you might be interested.
Best wishes
Sylvia xxxx
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Hi Sylvia,
I said in my last post to you that I would be back to comment on the later post from you to me. Your post was mostly about Mammograms, and you were referring to my story about the women I knew with DCIS tumor who were rather aggressively treated. I thought the same. My DIL had no chemo, radiation, or Tamoxifen; and yet had a full mastectomy with reconstruction. At the time, she and my step-son were not very interested in what I had to say, but leaned on the advice of another friend, whose wife also had a DCIS tumor and had no treatment for it except for a full mastectomy with reconstruction. They both went to the same respected Cancer Center, so I kept my mouth shut once I realized they had chosen the path they wanted to take. So far everyone is doing well, which is wonderful. They are young (40s) women with children and busy lives.
I wonder too, and possibly I agree with your friend the nurse, who thinks that a DCIS tumor is a pre-cancer. My aunt died in her 80's, she had a DCIS tumor when in her 50s, she just had the lump removed with no other treatment. She died of pancreatic cancer, but her children were told there was no connection to the Breast Tumor of 30 years earlier.
I also noticed the Chris Woollams post, have not made my way through it yet. I went to 2 funerals this last week. The lady who died was 73, and died while cleaning house. The man who died was 61 and keeled over while working in his yard. Both with no known illness, just sudden death.
I will comment on the second link you posted, have not fully explored the first link. The second link refers to a study being done on a new hope for TNBC. I always wonder at the accuracy of the descriptions of TNBC; is it really that TNBC is so much more aggressive, or is it that there is no treatment that specifically deals with it, as there is with ER+ BC? Perhaps it doesn't matter, it seems to be the way that TNBC is reported. The article states the following:
"A unique cell surface protein found on triple-negative type breast cancer cells called JAG1 is a promising new therapeutic target for this hard-to-treat and highly metastatic type of breast cancer, according to researchers at the University of Illinois at Chicago." The article goes on to describe the mechanics of how this drug works, it is going to be tested next on mice that have been given human TNBC tumors. Poor mice, I hope they somehow know we appreciate all this. I'm pretty sure this drug would be given in addition to chemo and radiation, if it worked with no ill side effects it would be great, but I am realizing that there don't seem to be any drugs without side effects. It's interesting that the study is being done by the Dept. of Defense.
As far as the causes of cancer, poor diet and bad food and bad habits. I know so many people who are overweight, and don't exercise and so on, some of them have health problems but not cancer for most. It continues to be a mystery, and you and I will continue to try to figure out the whys and wherefores. That being said, I also know too many people who have, or have had, cancer of some kind.
I will talk to you later, I need to catch up with posts.
Love, Mary
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Adagio,
I'm glad you like the purple hellebore, I'm sure your cream-colored hellebores are beautiful too. I love them, they are such hardy plants and have often surprised me in mid-winter with a flower.
in answer to your comments on the knee MRI: I was told I'm not a candidate for knee replacement, I suppose because the arthritis is not severe enough yet. The meniscus and ACL tears are sometimes repaired with orthroscopic surgery but apparently the surgeon had no interest in doing that surgery on me, and I know there is a good chance of it being unsuccessful. I certainly don't want to make it any worse. The tendinopathy will be a constant, I think. I don't know what could be done about that. I'm sure you are right about degenerative changes being part of the problem, but part of it happened, or exacerbated, on that day about a year ago when I was doing a particular exercise with the therapist. I do so regret I attempted that particular exercise past the point of pain. My knees caused me no problems before that day.
Re: mammogram and follow-up. I see the MO every 6 months for a check-up. It is very short usually, she does a manual examination of the whole chest and neck area, and asks questions about my general health. Do I have any new or unusual pain? She listens to my lungs. She does not take any blood for Labs, she says my GP can do that. Unless there is something she is concerned about, I should say. If I have any new pain she will order an MRI or some such scan. I am at 4-year mark, I am not sure how long these visits will go on. She does order a mammogram every year, even though the tumor I did have was not seen in a mammogram I had 3 months before diagnosis in 2014. I am not sure annual mammograms are valuable with fast-growing tumors. Some years before BC, I had a mammogram and it picked up something in my left breast. I had a stereotactic biopsy, and it turned out to be only a calcification, that was scary too. It's too bad the mammogram can't tell the difference between malignant and non-malignant! I have very mixed feelings about mammogram safety and efficiency, but so far I have gone along with the doctor's orders, it is very brief with only one small breast to scan, but a clear test does not give me a magical feeling of safety!
Spring is late, my truck's windshield has ice on it this morning, one of these days!
Talk to you soon, love, Mary
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Hi Hanieh
I'm glad your daughter is enjoying the English lessons. As I have started to travel around the world I am always surprised at how many people speak English. In Aruba the children learn 4 languages in school, Dutch, English, French and the Aruban language, Papiamento. Other countries too seem to stress language learning much more than we do here.
I think I am a bit messier than you and Sylvia. I tend to pile up magazines, papers and books because I really do mean to get to them, but somehow often don't. I have to regularly clear away clutter, and it is a good feeling when I get it done.
I will be interested to see the results of your BRACA test. May I ask what are the pills that the doctor prescribed for your hormone levels?
Your hair should be coming back in soon, I thought the hair growth was rather entertaining as it came back in. My hair came out gray, silver and quite curly. I liked it, but now it is much the same as it was before, partly wavy and partly straight. However, the gray is almost all gone, and my natural color is not bad at all. Dark blonde shading to brown. Your hair will be back to its' former glory, but it will take a while to get back to that length. Try to enjoy it short as it grows out, you may surprise yourself and like it!
I am sorry about your brother, I do hope he gets to spend time with his children regularly. It's very important for everyone.
Hanieh, I will talk to you again soon, you are so often in my thoughts, and I'm glad you got a vacation!
Love, Mary
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Hello Mary,
Thank you for your latest post. I realise that I still have an earlier one to answer and I shall try to get through it this week. I keep having disturbed days when I have no time to sit and be peaceful. As for your latest post, I am going to try to answer now.
I do believe that treatment for breast cancer may be getting too aggressive when it is not necessary and that bilateral mastectomies and reconstruction may just be too much. This is my own opinion and other women have to make up their own minds. This DCIS seems to be getting treated very aggressively and may not be necessary. It is almost a case of throwing everything available at breast cancer just because they can. They also seem to be forever looking for more and more drugs to throw at patients.
You might be interested in reading the thread Success Stories in the forum Surgery, Before, During and After. I found it very interesting to read these stories of women who just had surgery years ago and have lived to a ripe old age. It got me wondering about all the patients getting lymphoedema today after surgery and what they did about it. It seems to me they probably had some swelling and it just went away.
I know that my friend, the nurse, was often being told that she had DCIS and she has never had any treatment. She is adamant that it is pre-cancerous. On the other hand her friend, a nurse, with DCIS, insisted on having surgery. My own breast cancer consultant, so I am told, said she did not need the surgery but did it because the person was adamant she wanted it.
What is interesting is that I looked up the definition of DCIS with reference to melanoma skin cancer and it definitely says that it is a pre-cancerous state.
It must have been a sad last week for you going to two funerals.
The way both of these people died is the best way to go. It is better than lingering on with no hope. I would think there probably was something undiagnosed going on in their bodies.
I have just read the link entitled Department of Defense grant to test promising treatment for triple negative breast cancer.
I too have doubts about quite a bit of this article. First of all I think all breast cancer is aggressive and that one sort is no sort is no worse than the other. With TNBC all the doom and gloom is because there are no drugs to put patients on after the standard treatment that we all have of surgery, and/or chemotherapy and/or radiotherapy. To say that it is hard to treat is not very encouraging to patients, given that TNBC responds to the standard treatment just as well as any other breast cancer. What they really mean is they are desperately looking for drugs to put us on for ten years like they do the hormonal patients with awful drugs like tamoxifen and aromatase inhibitors. I have underlined on the paper "a small drug molecule that can block JAG1".
I have also underlined "JAG1 is a promising new therapeutic target for this hard to treat and highly metastatic type of breast cancer".
I do not believe it is hard to treat or any harder than any other breast cancer, and metastases may be more common because TNBC appears to affect younger women, so has more time to come back.
I think we need some statistics on how many women are getting hormonal and how many women are getting TNBC. We need the ages of these women and at what rate the metastases occur. In my own life I have had a friend with triple positive breast cancer have metastases after a short time and dying from that in a relatively short time as well. She was given so many drugs that I just cannot believe it. The other person I know had hormonal breast cancer, but HER2- and the cancer came back and spread after 13 years despite being on tamoxifen etc. She is doing alright but not often free of taking drugs.
I have also underlined "has received a three year $1.17 million Department of Defense grant to develop this new therapy to treat triple negative breast cancer". That sure is a big motivation!
There is mention of African-American women being most likely to develop TNBC. Should they not be trying to find out why African-American women are developing TNBC? Again, we need some statistics. We need different statistics for the different age groups of African-American women and we need to compare them to the same statistics for white women. We also need to know about Hispanic women.
I have an issue with "typically treated with aggressive chemotherapy or radiation". Reading through our posts we all seem to get, basically, the same combinations of chemotherapy drugs.
The mention of "notch signalling pathway" is somewhat complex for me to understand, as is "notch decoys".
I did, of course, notice, that all this is being done on mice. Well, as we know, we are not mice!
It states that it did not cause gastrointestinal toxicity in the animals. I wonder what it did cause?!
I also picked up on "a new, more advancer JAG1-inhibiting notch decoy, optimised for use in humans" and a bit further on "we believe the JAG1-notch decoy will have fewer side effects than aggressive chemotherapy, radiation or other notch inhibitors. Most importantly this therapy MAY block metastases to new organs which would substantially reduce breast cancer mortality".
My question is, are they saying more patients die from TNBC than others with hormonal?
Like you, I believe this drug would be added to chemotherapy and radiation and I do not believe there are drugs that have no side effects.
Like you, I find it odd, rather than interesting, that this research is being done by the Department of Defense!
I still believe that the only cure for cancer will come from prevention.
I think we can sum up the causes of cancer as being mainly due to our modern way of living and it is a mystery why seemingly healthy people get it and those that fail every aspect of healthy living do not get it. I shall always remember the first time I met my breast cancer consultant that she said I should not have breast cancer. When I was officially diagnosed she said it was a poor prognosis because she could not give me tamoxifen. I think that says it all.
I need to take a break now. I shall look back later to your other post and to the first link and deal with that.
I hope you get to look at your Chris Woollams email. I am giving it a miss this time, as I am just too overloaded, but I shall be interested in any comments. I also have some information to post about an article that Raymond found in his E&T Magazine, issue 3 April 2018.
Another interesting thread under the forum Lymphoedema is Lymphoedema Guidances. I found it very interesting.
I can tell you that I am fed up with the wound on my arm and the lymphoedema arm in general. I have spent a lot of time on the phone this morning trying to find out the result of that second biopsy. I found I got nowhere and I do think the NHS has major problems, be it at the hospital or at the GPs surgery.
That is all for now.
Love.
Sylvia xxxx
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So, I saw my oncologist today for the first time. Seems very young for a consultant but that's just old age creeping up on me. I didn't find that she explained things very coherently, so I was constantly having to butt in to get her to clarify. The other thing was that I had no sense that she saw me as a person, rather than just a pathology, which is not ideal; the breast surgeon was brilliant, talking to me like a friend, someone he cared about. Well, no worries: I won't see that much of her once I'm handed over to the chemotherapy nurses next month.
What are other people's experiences of their oncologists? I still remember the consultant my husband had who broke the news to us that his cancer was terminal in the most insensitive way imaginable. Yes, we need highly skilled doctors, but let's not forget the bedside manner!
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Hello Mary,
I am sorry that I was not able to get back to you sooner but it has just been one of those days.
I have been looking at your post of March 22nd. You mentioned that there must be a different name for the electrode therapy that your acupuncture doctor used. I would be interested to know it if you find out.
I was interested to know that you had been looking at a map of Devon. Yes, it is true we are not that far from Dartmoor National Park and it is a truly beautiful and awe inspiring place.
Like you, I also have enjoyed the stories of Sherlock Holmes and I particularly like the Hound of the Baskervilles.
Cornwall is an interesting county and an ideal setting for the novels of Daphne du Maurier. It is quite isolated and I could not live there but I have enjoyed trips there.
I think that lymphoedema is caused by damage to the lymph system by surgery (not necessarily cancer surgery), chemotherapy (the taxane drugs) and radiotherapy. It is under diagnosed and patients are not warned about it before treatment. I do not think drugs will be the answer to a damaged lymph node.
The Raynaud's syndrome is a bit mystifying to me.
I shall be interested to know what you think about the link to information about Foundation One.
I just saw on the TNs that Xeloda is going to be used as part of standard treatment for TNBC. That is yet another drug with all its side effects and I do wonder where this will end.
Thank you very much for posting the photograph of your beautiful flowers. We need these photographs very badly to keep us all in a good mood.
Love.
Sylvia xxxx
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Hello Mary and everyone,
I am posting a little bit of information about the article that my husband, Raymond, showed me in his E&T Magazine issue 3 April 2018. The title is "Golden Shot at Cancer Cure".
Tiny lumps of gold are being used to minimise the side effects of chemotherapy, and to tailor cancer treatment to individual needs, and melt tumours with a sudden blast of heat.
There is a lot more detail in the article in the magazine. The link is:
https://eandt.theiet.org/content/articles/2018/03/golden-shot-at-cancer-cure/
Best wishes to everyone and I hope you all have a good week and a happy Easter Weekend.
Sylvia xxxx
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Hello Val,
I just wanted to say congratulations on getting a good report for your latest check up.
Keep up the good work.
Love.
Sylvia xxxx
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Hello SusieW5,
I was sorry to read that you did not seem impressed with your oncologist. I think it is very important for a patient to have a good relationship with their oncologist, as chemotherapy treatment is a very long process and you need to be with a consultant with whom you feel at ease and have confidence in.
It is also very important that your oncologist explains everything very clearly and that you understand what you are being told so that your consent for treatment is fully informed consent. You are about to have very toxic drugs put into your body. You need to know the exact names of the drugs that are going to be used and why they are being used. You need to know the regimen of the drugs. One of the most common combinations used is EC plus T. This is epirubicin (brand name Ellence) plus cyclophosphamide (brand name Cytoxan) and a taxane drug, such as docetaxel (brand name Taxotere) or paclitaxel (brand name Taxol). There are other regimens but the ones mentioned are standard.
I have noticed that carboplatins are also being added.
Do not be afraid to ask as many questions as you want.
Unfortunately there are so many patients being treated in the NHS that you often do feel just like a number.
I was glad to know that you did like your breast cancer surgeon. It seems he has more people skills.
You will see the oncologist or her registrar during your months of chemotherapy treatment. You will see one of these regularly.
Are you going to have your chemotherapy every week or every three weeks? Have you been told the side effects of chemotherapy treatment?
Are you going to have cold cap to avoid hair loss or try to avoid hair loss?
Some women ice their feet and hands to avoid peripheral neuropathy.
Please make sure you are well informed before you start your treatment.
If we can help in any way to give you more information please let us know. Remember we are here to support you and get your through your treatment.
I do understand what you mean by doctors need bedside manners.
Wishing you all the best and keep in touch to let us know how you are getting on.
Best wishes.
Sylvia xxxx
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Hello Ladies,
It has been 3 months since I last posted. Thank you Sylvia for always remembering me. I was reading the thread from yesterday and haven’t finished reading yet from where I left behind.
My work and family commitment took a front seat for the last 3 months. I was working 3-4 days in a week and about 9.5 hours each time. For morning shift I start at 6 am - 3.30 pm then afternoons shift is 2.30 pm - 12 mn. On non-working days I was busy with the Little One.
We just came back from a trip in Australia last 9-19 March. My DH visited relatives in Melbourne then we also went to Brisbane and Goldcoast as I visited my friend there as well.
This week I am on break, I was busy looking for a full time job that will not require me to work too early or too late. I just signed a contract today and I will be starting next week.I decided to do full time because I find that when I am working I don’t think too much and I sleep well.
Adagio and Kath, I read that you both have itching and crawlers. I do have that same problem as well. In 1st week of Feb I had bad case of hives attack and it affected all over my body. I couldn’t sleep at all. The medicine the doctor prescribe didn’t give much comfort. I tried putting lotion all over my body and didn’t help as well then in desperation I tried olive oil and it works. I was able to sleep peacefully and the inflammation subsided. So from then on I splatter my whole body with olive oil and even the occasional crawlers doesn’t bother me now. Maybe you can try and see if it will work for you.
Regards to Pam, Mary, Hanieh and Marias.
Best regards,
Lou
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Hi, Sylvia,
I am well informed as I kept asking questions to find out what I needed to know and steer her back from her rambling. I did feel that a woman who had little confidence or who was intimidated by doctors might have come away baffled, but luckily that isn't me. I shall continue to ask questions whenever I need to. I have booklets about the chemotherapy drugs and shall ask for the cold cap. It'll be every three weeks so dragging out all over the summer.
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Oh, dear. Now I've read the booklets about chemotherapy and the cure is sounding much worse than the disease. My oncologist says that having chemotherapy before radiotherapy increases the survival rate by 11%. Okay, that's far from negligible. But with a history of Alzheimer's in the family, I am especially concerned by talk of cognitive damage which, and I quote, 'Usually improves over time'. Usually? If surviving breast cancer means precipitating a decline into dementia then No Thanks.
I would really love to hear from anyone with triple-negative breast cancer who refused chemotherapy because that's the way my mind is going tonight. I can see myself swinging back and forth over the three weeks before I'm due to start and could do with more data.
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Hello Sylvia, Mary, adagio and all
Right now I'm having my last injection and somehow I have mixed feelings about it. I'm happy for the end of treatment. Yet a feeling of worry is also with me. Based on the massive search I had on the internet I will try to take all the good food that can help with TNBC including bee propolis, black pepper and tumeric, apricot kernels, cotten seeds, wheat germ powder, lemon, green tea, ginger and and so on.
Sylvia, no doctor is able to answer why so many people are being diagnosed with breast cancer. But a lot of them recover very well without any recurrence. In two weeks I will go for Brca testing. I hope everything goes well. My doctor is also in favor of a low dose radiation as my tumor was big. He also believes as my renowned surgeon failed to diagnose my recurrence early, there is no need to go for checkups to him any more and he will do the checkups every 3 months. My only big deal is to stay calm and hopeful.
adagio, thank you so much for your kind words. I really enjoyed spring cleaning but as you know you can not enjoy clean house permanently and it needs cleaning every day or every other day.
Mary, try to avoid things piling up in your house as much as possible as it can block the flow of positive energies in your house according to feng shui which Im very much in favor of.
My trip to North was really wonderful and I was really refreshed. I hope this last injection doesn't bother me much and I manage to overcome its fatigue, depression and other side effects easily. By the way, there is a fuzz of grey and white hair on my head. I desperately want my hair back as soon as possible.
My husband is a little down as yesterday he hit the car against the garage door. He opened the door with the remote earlier than he was ready and when he wanted to come out of it the door was closing. He didn't even pay attention to the sensors alarm. I can't figure out why but I'm sorry that he feels so down.
Some pictures of my trip to the north.
It's me right now on my last chemo session.
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Hello Sylvia, Mary, adagio and all
Right now I'm having my last injection and somehow I have mixed feelings about it. I'm happy for the end of treatment. Yet a feeling of worry is also with me. Based on the massive search I had on the internet I will try to take all the good food that can help with TNBC including bee propolis, black pepper and tumeric, apricot kernels, cotten seeds, wheat germ powder, lemon, green tea, ginger and and so on.
Sylvia, no doctor is able to answer why so many people are being diagnosed with breast cancer. But a lot of them recover very well without any recurrence. In two weeks I will go for Brca testing. I hope everything goes well. My doctor is also in favor of a low dose radiation as my tumor was big. He also believes as my renowned surgeon failed to diagnose my recurrence early, there is no need to go for checkups to him any more and he will do the checkups every 3 months. My only big deal is to stay calm and hopeful.
adagio, thank you so much for your kind words. I really enjoyed spring cleaning but as you know you can not enjoy clean house permanently and it needs cleaning every day or every other day.
Mary, try to avoid things piling up in your house as much as possible as it can block the flow of positive energies in your house according to feng shui which Im very much in favor of.
My trip to North was really wonderful and I was really refreshed. I hope this last injection doesn't bother me much and I manage to overcome its fatigue, depression and other side effects easily. By the way, there is a fuzz of grey and white hair on my head. I desperately want my hair back as soon as possible.
My husband is a little down as yesterday he hit the car against the garage door. He opened the door with the remote earlier than he was ready and when he wanted to come out of it the door was closing. He didn't even pay attention to the sensors alarm. I can't figure out why but I'm sorry that he feels so down.
Some pictures of my trip to the north.
It's me right now on my last chemo session.
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Hi, Sylvia
Finally, as I type this I look out the window and things are getting green, the lilac bushes have tiny green leaves and the forsythia have yellow flowers. I still have rosebush pruning to do, but it's always raining lately.I will see my acupuncture doc today, and ask him the name of the therapy he used on my knee with the electrodes.
Yesterday I went back to see my original orthopedic doc, to show him the MRI of my knee, and ask if there truly was nothing else I could do. The other doc I saw for my second opinion was so dismissive and offered no solutions, so I thought it was worth one more try. This doc of yesterday's visit decided I should try the Synvisc injection into my knee, it is "a gel-like mixture made from a substance called hyaluronan, that comes from the combs of chickens. Hyaluronan is a natural substance found in the body, and found in the joints." It was actually suggested to me by my acupuncture doc some time ago, but the second-opinion doc never mentioned it. So, once again I am optimistically trying something, at least it is not a steroid mixture, we'll see what happens. If it works, the results could last for 6 months to a year. It has been around for many years, but is still an expensive treatment. Doc said since I am on Medicare, he wasn't worried about it being approved, apparently the insurance companies are willing to try a lot of things to keep us seniors off opiates! There is such a problem with abuse of opiates that they are going to crack down on Medicare recipients getting them. Doesn't seem to me that seniors are the main abusers, but what am I, just a cog in the wheel.
I agree with you that drugs won't fix an injured lymph node. I was wondering though, if something could be done to stimulate the movement of lymph somehow other than massage and garments.
I don't understand the Raynaud's syndrome either, I understood it is a autoimmune condition. I saw a neurologist after chemo finished and he tested me for all immune diseases and I came back negative. Perhaps I had near-frostbite at one point, I don't know. I don't even know if that's a possible cause.
I did check out the TN posts on Xeloda being used in conjunction with the other treatments for non-metastatic BC. Apparently it is also a neuropathy cause, so they are hesitant to use it in some cases where the cancer hasn't spread. I think it is regularly used in treatment of metastasized tumors.
I have not gotten very far in the Foundation One site, there is a lot of information there and I find myself out of time too. I will try to get back to it when I can.
I have to go for now, and will talk to you later.
Love, Mary
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Hi Lou and Hanieh,
Good to see you both, I will be back later, I have a busy day. I have to go out in the rain again!
Mary
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Sylvia
I did check out the article Raymond found in his magazine, about the gold nanorods. I think it would be good if they could find some way to treat cancer besides more drugs, however I don't see how these gold nanorods could stop more tumors from forming if cancer is metastatic. I'm sure we will hear more about it, still early days!
Mary
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I notice that most (all?) of the women posting on this forum have grade 3 cancer cells, as do I, which makes me think that this is normal for Triple-negative. Does that sound right?
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Hi, Susie
I think that's right, Grade 3 seems to be the norm with Triple-Negative.
Also I did see your earlier post about being afraid to do the chemo, because it sounded worse than the cancer. I wish I could say I disagree with you, but I don't. However, it is doable and many people have no ill effects. I have seen a few people on this site, Triple Negative BC, that are not doing chemo. But the very large majority do chemo because there is no other drug offered to treat it.
I also saw your post about your oncologist treating you in an impersonal way, I can sympathize with that. My onco is a very beautiful young woman, who is very businesslike. She is said to be extremely competent, I inherited her after my onco retired on my last day of chemo. She is not a warm and cuddly person, but I guess that's okay. I don't spend much time with her now, and hope I don't have to in future! Are you in UK or USA? I saw my first oncologist quite a lot while I was doing treatment, Sylvia could tell you about the routine in UK. I think it would be better if you felt more comfortable with your oncologist.
I believe you are starting your chemo next week, I wish you the very best, and please do come and tell us about your experiences.
Talk to you soon! Mary
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To all,
I saw this link on another thread, thanks to Hope for posting. I thought I would pass it on here.
https://tnbcfoundation.org/state-of-the-art-tnbc-treatment-brochure
It's long, but it sounds interesting.
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Thanks for your kind words, Mary. I'm in the UK, in London. Perhaps I was being too hard on the oncologist. We'll see how it goes on our next meeting, which is due on April 11th. It'll be at least two weeks before I start chemo, probably more like 3. The wound has closed but there seems to be a touch of infection in it and I've started a course of antibiotics for that. On reflection, maybe it's best to expect the worst from chemotherapy; that way you may be pleasantly surprised!
Meanwhile, I spoke to my GP yesterday and have started with an anti-depressant which I found effective in the past and which I hope will take the edge off things over the next six months.
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to all
Little green leaves in background, lilac.
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HI, Hanieh
I think we all know how you feel about the end of treatment; on one hand, it feels wonderful because now you can get on with your life. On the other end, it's a bit like being set adrift in a dangerous sea. I couldn't wait to be finished, but then realized that I felt like I was no longer fighting against it. You are right to continue the fight by eating the things you have learned are good for you, and bad for cancer. Also these good things will help your immune system get healthy again.
So next you will go for BRCA testing, I hope it is negative. And then I see your doctor is recommending a low-dose radiation treatment. It seems like you have much more confidence in this doctor, that can only help.
Thanks for your advice on being tidier, having too many things lying around is a bad habit and this morning I paid for it again. I opened the refrigerator and out fell a small bowl of soup, had to clean the floor. Then I went to get a hammer and a suet feeder fell on my head! I guess it's better than the hammer falling on my head!
I have been reading a little about feng-shui, apparently my bedroom is set up well for the most part, but the head of the bed is under a window. That is not good, but with the way the room is built there is no other way to set the bed. Also the bed sits on a platform, which does not allow the flow under the bed. Not sure what to do about that, I really like my bed!
I'm glad you had a good vacation and are refreshed, and glad your hair is coming back. Get ready for surprises for a while in how your hair grows!
Sounds like your husband was thinking of something else as he tried to exit the garage, these things happen. I'm surprised the garage door didn't stop itself?
Thanks for the pictures you posted, you are such a beautiful family!
Talk to you again soon, love Mary
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Hello Lou,
It was so nice to hear from you and to know that you had not left us.
Thank you for the lovely photographs. They let me know that you seem well and happy and getting on with your life.
I do understand that you have work and family commitments. You were certainly doing long shifts!
I think that after finishing your breast cancer treatment you had earned your trip to Australia.
I do hope you will enjoy your new full time job.
Keep in touch with us and pop in whenever you can.
Love.
Sylvia xxxx
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Hello Susie,
Thank you for your post on March 27th. I am busy trying to catch up.
Reading about the side effects of chemotherapy can be frightening but you can get through it and I am sure you will just like the rest of us. We all have different experiences when going through chemotherapy. I think I went through it more easily than a lot of women seem to and I really only experienced fatigue. Of course, I did start to loose my hair after the first infusion, but I did not have the cold cap treatment. I asked my oncologist about it but she said she was against it because of the risk of infection. However, more and more women seem to try it, but it seems that it is not always effective.
Although I had no side effects as I went through treatment, I had effects that came on after I had finished all my treatment and the permanent one seems to be peripheral neuropathy in the feet. My oncologist told me it was definitely caused by the taxane drugs, so whether a patient is given Taxol or Taxotere, there is no difference. I have seen my GP, and different podiatrists and they have all diagnosed peripheral neuropathy and said there is no cure. This neuropathy is not the same as the one caused by type 2 diabetes.
After treatment I also had a short bout of lymphoedema but it went away quite quickly. It can be caused by surgery, again the taxane drugs and also radiotherapy. Lymphoedema causes swelling in the arm on the side of where the cancer was or in chest area. Unfortunately it has come back twelve years after treatment and I am hoping to get rid of it even though we are told it is a chronic state.
During treatment I had no problems with low white blood cells or low red blood cells or any problem that meant I could not go on to the next infusion.
I think you just need to go one day at a time and not worry too much about what has happened to others. It is all very personal and I think a lot depends on your state of health when you begin treatment.
Women on the threads here do mention having "chemo brain" during treatment, meaning they feel their cognitive skills are not as good, but they do recover. I can understand your concern about this.
I think we all have to make our own decisions about the treatment. I know that for me I was very hesitant about all of the treatment and I delayed for many months, but I would not do this again. I delayed in order to see a homoeopathic doctor to whom my breast cancer surgeon recommended me. That doctor advised me to have the orthodox treatment but she said would help me at each stage with homoeopathic treatment. She did this and among other things prescribed me oral Iscador (mistletoe) for five years.
I also saw a nutritionist doctor privately and she gave me lots of notes about nutrition, most of which I was already following. On that list was green tea and bitter apricot kernels and I have been drinking the tea regularly since then and eating the bitter apricot kernels. She also told me to have the orthodox treatment.
Do let us know what you decide to do.
Wishing you all the very best.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post of March 28th. I am slowly catching up on the posts.
It is a strange feeling when you finish treatment, but it is good to have chemotherapy behind you and to be able to concentrate on getting strong again and building up your immune system.
It is now important to have a healthy diet with a good mixture of different food in order to get the different vitamins and minerals into your body. Most important is a healthy mixture of fruit and vegetables, especially green vegetables, along with oily fish, some seafood and organic meat if you are eating it. As for fish and seafood, you need cold water ones and not farmed fish etc.
I was interested in all those products that you are taking and was wondering how you take them all. Like you, I have green tea, root ginger and bitter apricot kernels. Most of all I depend on natural food, such as fruit and vegetables, especially blueberries, broccoli and all members of the cabbage family. I eat mainly wild salmon, North Atlantic prawns on the shell and plenty of nuts, and seeds (organic almonds, Brazils, walnuts) and seeds that I grind up and use as a base for soy yoghurt. I also have unsweetened Alpro almond drink. As you know I steer clear of meat and dairy products.
I hope you saw the chart that I posted recently which states that about 30% of cancers are caused by lifestyle. We can only do our best with nutrition, exercise and avoiding stress and hope for the best.
I think medical efforts to find a cure should be based on prevention and not more and more toxic drugs.
Doctors do have a list of risk factors, which I have posted many times, but, as they say, the risk factors have not necessarily caused the cancer and some of those risk factors we cannot avoid.
I do hope you will have good news from your genetic testing. Remember that only about 5% of women with breast cancer have these faulty genetic genes.
Let us know whether you decide to have the radiation.
Thank you for the lovely photographs.
I see that you have been with us now for three years. It has been so educational having you on the thread and I always remember how I was reading some other threads, saw your name, thought you seemed a bit lost, and invited you to join us. Since then you have become like one of the family and I think Mary and I feel that especially, as does adagio.
Stay with us, take one day at a time and never give up hope. I do hope your husband has recovered from his little mishap. It happens to us all.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post of March 28th. I am still trying to catch up. Wednesday was a most frustrating day for me and I could not settle to do anything on the thread.
Yesterday I felt really tired after Wednesday and I did not get to do very much. I was glad to see that you had been keeping everything going smoothly on the thread.
It is true that nature is starting to come alive again, but, as you say, it will not stop raining in a lot of countries, including the UK. It has been a most dreary time here for the past six months.
I was interested to read what you said about your knees and having a Synvisc injection into them. I must admit I have never heard of this but it could be the UK is far behind.
I have heard of hyaluronan. It is what we call more commonly hyhaluronic acid. I do hope this will work for you.
I think opiates are being prescribed a lot here for all sorts of pain when it used to be kept for the severe pain of terminal cancer. I think seniors in general are being prescribed too much medication in general.
As for lymphoedema, I think the most important thing is to keep the arm moving and use it as normally as possible.
Like you, I have read some posts on the drug Xeloda and I do not like the sound of it at all and I do not like, either, the continual use of more and more drugs. It seems for chemotherapy treatment we started off with the oldest drug, doxorubicin (Adriamycin) and then cyclophosphamide (Cytoxan) along with drugs such as methotrexate and 5fu (fluorouracil). About the time I was diagnosed in 2005 the taxanes seem to appear and I remember that they may have not been routinely given. I was told I would get them. Little did I know how much damage they caused. All the publicity is about how effective they are. Now we seem to have the carboplatins and Xeloda, and they seem to have horrible side effects. As you said, Xeloda is another cause of neuropathy. There is much talk of Xeloda on one of the threads in the triple negative forum.
I cannot really understand what Foundation One is.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
I wanted to say thank you for the photograph of your lovely flowers and the green shoots peeping through from outside. I shall be so glad to get back to doing some gardening in the grounds here. I have not been able to do much in the past six months, as the weather has been awful, nothing but rain, not to mention the snow episode and I am just going to carry on gardening as I have done in the past. Spring is so late here in Devon this year.
The news is always dire here and we seem to go round in circles. It is either the Russian double agent story or Brexit which is not really the Brexit we voted for, Donald Trump, Vladimir Putin, Jeremy Corbyn and Nigel Farage. The Establishment is out to get them just because they are not happy that the referendum result went against them and they do not really want to carry out the wishes of the people. Because things did not go their way, they are seeing fraud everywhere and Reds under the beds!
That is all for now.
Love.
Sylvia xxxx
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Hello Susie,
What Mary said about most TNBC tumours being mostly grade 3 is true, but some of them are grade 2. I do not think this makes any difference with treatment.
I think with TNBC most have or had in the past gone through chemotherapy, but this may be changing because of how toxic they are.
In London you have access to good hospitals so you can always get second opinions.
Wishing you all the best.
Love.
Sylvia xxxx
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