Calling all triple negative breast cancer patients in the UK
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Hi everyone,
Spent the day with my daughter and my grandkids yesterday.Parker wanted to wear a hat like Grandma!
Have a nice weekend!
Rhonda
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Gmmiph, when I had my first bc, it was not TN and I took tamoxifen. This time being TN , it was not on the table for me as a treatment.
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rlk58 what a cute picture.
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Hello Marias,
Thank you so much for sending those amazing pictures of the Cordillera Occidental. They are absolutely awe-inspiring. These mountains in different countries make us realise how small we are. I have not seen such scenes since my husband, Raymond, and I drove through the Canadian Rockies in Western Canada. I cannot imagine what it must be like to look out onto such scenes every day.
I am certainly going to have a look at the video you have sent and I am confident I shall be able to understand it.
I do hope we can have some interesting conversations about the way countries are run. The UK is not completely run on state lines. Much of the good work of 1945 has been undone through various Conservative governments and Tony Blair, who turned the traditional Labour Party, which we now call Old Labour, into New Labour. People who work for the state here and that includes all those working in the NHS, all teachers and university lecturers and all the staff that goes with the universities, all those people working for the state as social workers, probation workers and so on and so forth. They all pay taxes, just as people do in the private sector. Here in the UK there was mass nationalisation in 1945 and all the railways, and all the utilities were all put under the state, as were the coal mines and steel industry. Most of those have slowly been put under private ownership and are a fiasco now. Profit and greed is the name of the game and what ordinary people are now paying for these utilities are scandalous. Water companies are among the worst, not to mention the telephone companies. I am a great believer in state ownership. Most of our now privatised industries are run by big foreign companies. I am so glad that I went through the education system and the university system when it was something of which to be proud and there was a system of grants.
I believe that businesses should have a moral conscience and pay taxes according to their means. Under globalisation companies in the Western world have gone abroad to get cheap labour or else they have brought that cheap labour to Western countries and put their own people out of work. Brexit was voted on in a referendum mainly due to this.
Keep well, Marias, and keep looking forward.
Fond thoughts.
Sylvia xxxx
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Hello Gina,
With reference to your post, I think you may be looking at too much information.
The information that you have put on the thread about tamoxifen etc. will apply to women who have been diagnosed with hormonal breast cancer, either ER+, PR+ and HER2-, or ER+, PR+ and HER2+. They will automatically be put on tamoxifen for years post treatment or depending on age one of the aromatase inhibitors, such as Arimidex. Yo have been diagnosed with triple negative, and, as I said before, these low numbers in the hormones are, as my medical team told me, negligible. When I was first diagnosed, the consultant told me that having negative receptors meant drugs such as tamoxifen were of no use to me and that after chemotherapy, surgery and radiotherapy, there would be no other treatment.
You are the only person that can decide what you want to do. Just make sure you know the side effects of the drugs that you are being offered.
If I were you, I would read the book I mentioned recently, The Cancer Whisperer. The English is easy to understand and the book inspiring.
I came across it quite by chance in a bookshop and then I saw a feature about it in the Health pages of the Daily Express last Tuesday January 31st. I am trying to find the time to read it. I have read some and know that I shall read it to the last page.
Wishing you a nice weekend.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
Thank you for your post and I was glad to know that you had got through the first week of radiotherapy with no real bad side effects, other than fatigue. That is good news. Make sure you take care of your skin. What did it feel like being away from home? Did you find the days long since the treatment does not take that long.
It must have been really good for you and your husband to meet up and to have a nice weekend together.
You will need to be patient with the aches and pains from Taxol and give your body time to recover and get back to normal. The treatment will have knocked your body for six. As for the peripheral neuropathy in the fingers and feet, I do not really believe there is any cure for this. Somehow we have to adapt. I know my feet always feel better after the podiatrist gives a light massage as she rubs in foot lotion. I do wonder whether reflexology would help. If anyone has any ideas, please post in.
If that were me, I would stay off things like the UK risk recurrence calculator. I do not believe in this and I think such things will just give you more anxiety. I do not believe that risk can be calculated as we are all individual and our body is not a chart. Just tell yourself you are going to be fine, that you are going to get to the end of your cancer journey and back to a normal life. If you had a printed out risk chart, what would you do with it? All you can do is try to eat healthily, have some exercise, minimise toxic toiletries etc. and try to relax and minimise stress. You need to keep the stress hormone cortisol at bay. Worrying about charts will just increase it.
Sending you fond thoughts and hoping all will go well next week.
Sylvia xxxx
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Hello Rhonda,
Thank you for sending in that nice photograph of your grandson, Parker. It is good to know that you are getting on with life with your family. Keep up the good work.
Fond thoughts.
Sylvia xxxx
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Hello Val,
I saw your post to Gina and was just wondering how long you were taking tamoxifen for. The reason I am asking is that I have read in the past that taking tamoxifen long term can result in a person ending up with TNBC.
Wishing you well.
Sylvia xxxx
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Hello Maggie,
I certainly agree with you about the beauty of Colombia.
I was so interested in what you said about your being a Research Fellow in Dementia. I think we need as much research into dementia as we can possible get. It is probably the worst disease that a person can end up with. Will you be researching the different kinds of dementia, such as vascular dementia and Alzheimer's? This must be a very motivating work and I can understand why you want to get back to it.
I can understand the worry you have about your son and of course about his two little boys. I do hope everything will come right in the end. Life is very difficult and complicated now and I think lots of people are getting too stressed out. I do hope your grandsons will enjoy their day at the Motor Home Show in Glasgow.
I was interested in what you said to Mary about the fact that you are going to take gabapentin for neuropathy. I must admit I have never heard of this but I am going to look it up. I do have neuropathy in the feet and my oncologist told me it was definitely due to the taxane drug, docetaxel (Taxotere). It must be the same for paclitaxel (Taxol). She told me there was no cure and that was back in 2006. My GP told me the same, as did two different podiatrists. The neuropathy does not bother me too much. There is no pain but just a kind of stiff numbness under the sole of the feet. The first podiatrist I saw diagnosed the peripheral neuropathy by prodding all over my feet while I had my eyes closed and I felt nothing. Last year, I had the second podiatrist, whom I see regularly, do the same test and again I felt nothing.
It is good that patients are now icing feet and hands to prevent this.
I do sympathise with all that pain and stiffness that you are going through. What have you been taking for this? I see so many people in the apartment complex where I live who suffer from general arthritis and related ailments. Devon is a very damp county and I do not think this helps. I am very lucky not to be suffering from this.
You must be so happy that your daughter does not have the BRCA mutation. Let us hope it is the same for your youngest son.
Do you know the magazine What Doctors Don't Tell You? I have been reading it for a long time. On the front cover for February, which I have just bought, the heading is How to prevent breast cancer. I have not had a chance to read it yet. I am reading the book I have mentioned on the thread, The Cancer Whisperer.
That is about all for today. Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I just wanted to wish all of you a good weekend. Make sure you have a relaxing Sunday if you have had a busy Saturday.
I thought you might be interested in a few bits of information that I got from the television programme Trust Me I'm a Doctor with Dr Mosley.
On this programme various theories are put to the test by using volunteers. One interesting feature was about sleep. I jotted down the following:
How much you sleep will affect how much you eat.
Sleep loss = a person eats more.
Eating habits are unaffected after a good night's sleep.
Good sleep needs to be about 7 hours. There is a hormone called ghrelin which is known as an appetite organiser.
They also tested whether doing exercise made you hungrier and tested the hunger level of the volunteers and how much they ate after exercise. Apparently doing exercise does not make you hungrier.
There were also tests about whether red wine was a benefit or not with reference to resveratrol. On the thread we should all know about resveratrol and its apparent benefits as an anticancer factor. It is found in red grapes and thus in red wine. Apparently the amount in red wine is very small and you would have to drink bottles and bottles of it to get any benefit, and of course we know that alcohol is a risk factor in the development of breast cancer. It was stated that to get any benefit from resveratrol you would need to take a supplement.
I know that these supplements are very expensive.
There was also a part of the programme about the importance of a healthy gut, and I think on the thread we all know that as well. They tested various probiotics and prebiotics which we need to consume in order to have healthy bacteria in our gut.
The winner for the probiotics was kefir which is a fermented milk drink. I do not touch any dairy products, but today I asked about kefir alternatives at my local natural food store, and was told there is a kefir product made from fermented coconut milk. The owner of the store is going to get some in, but I do not know the price.
The prebiotics that were the best are onions, garlic, artichokes and asparagus. I think they contain inulin.
At some point there was mention of leptin but I think that was to do with the part about sleep. I shall research it tomorrow.
Adagio, have a good time in Mexico and post photographs if you can.
Hanieh, I hope all is well with you.
Best wishes.
Sylvia xxxx
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Hi, Rhonda,
Your little grandson Parker is very cute, he didn't look too pleased at that moment about having his picture taken! How sweet that he wants to be like Grandma!
I am glad your genetic tests were negative. I don't know what could be making your upper chest sensitive. Perhaps nerve damage from surgery? Do you have a mediport?
Sounds like you are making your way through chemo, not too long to go. Hope it is not bothering you too much. We are all different in that respect, I think.
Have a good rest of the weekend!
Talk soon, Mary
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Sylvia
I took it for 5 years. It was considered experimental, and a trial when I took it 25 years ago. It was in my opposite breast. The biggest worry when I took it for long term was uterine cancer. So far so good.
In my opinion, if I didn't have to take it, I would not. I would be afraid it would possibly fuel TBNC. Since my 2nd dx was the opposite breast and 24 years out, they do not consider it a factor in my current cancer.
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Hi, Maggie,
Starting with the good news, how wonderful your daughter does not have the BRACA gene mutation! That is great news indeed; the 2 daughters in the family scenario I mentioned in my last post to you were positive for the BRACA mutation, and they decided to have double mastectomies and hysterectomies since they had already had 2 children apiece. I am very glad your daughter does not have to wrestle with those decisions.
As for the neuropathy; I do know what gabapentin is; it is the generic form of neurontin, which is a drug frequently prescribed for neuropathy. I was offered it early on, and tried it but decided to live with the symptoms I was having without taking anything for it. My neuropathy has evolved however, it started just in the feet, but has become somewhat system-wide. The more that I walk, the more my feet will tingle and burn, and my legs and right arm are bothered by it too, that is my surgery side. The worst symptom I have is weakness in my legs, and my GP told me there is no drug that will help with that. I can live with all the tingling and aching, but this weakness in my legs really affects my life and there's nothing I can do about it. If there was a drug I could take for that I would do it in a heartbeat.
I am very familiar with your shooting pains, I think some of your pain will die down as you get farther away from chemo; when I finished chemo I had horrible shooting pain all over my body. I couldn't drive, and couldn't carry a bag of groceries with my right arm. That did calm down after a while. I am sorry you are bothered by symptoms at night, my pains and tingles seem to be relieved once I lie down. Why is your mobility decreased? Is it pain or weakness? Please keep in touch with me about your neuropathic symptoms and if you take the gabapentin let us know how you do with it. I have looked for support groups for neuropathy around here but there are none, it is a frustrating thing to deal with. Sylvia is very lucky to only have it bothering her feet.
I didn't know you were working with dementia studies, if you will indulge me I will tell you about my family. I had 10 aunts and uncles on my father's side, of those 10 my family and I are positive that 4 of them had dementia, and perhaps Alzheimer's, and not sure about some of the rest. I have 2 aunts and 1 uncle on my mother's side, none have dementia. My father was 8 years older than my mom, and he was the baby, so on his side they are all long-gone. My dad died at 68 years old 35 years ago of a heart attack, and he did not have dementia. So at the time our relatives were still alive, we did not understand dementia, I know much more now, and my brothers and I are very aware that we are at risk of having it.
I do hope you can get things straightened out and get back to your work. It sounds very interesting.
Have a good rest of the weekend!
Talk again soon, Mary
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Hi Mary,I haven't had surgery yet but I am beginning to think my tenderness has something to do with carrying my granddaughter around.This Wednesday is my 10thTaxom and I see much doctor so I will ask her.I am so happy that I am almost done.Have you tried acupuncture for the neuropathy and pain?
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Sylvia, this is pic from our patio in Aruba. They were getting ready to take the group of chairs back out and spread them around we could step from our patio tile into the grass then the sand, then the water. Somewhere the sun is shining!
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Hi Mary,
That view looks so relaxing!Wish I was there! Enjoy!
Rhond
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Hi, Rhonda,
I wish I was there too! I was there in December, I just thought of it because Sylvia was talking of the long gray, rainy days. We have had a lot of gray skies too, and sometimes I stop and think about the places in the world where the sun is usually shining!
Talk to you soon!
Mary
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This is the north part of Aruba, very different. Uninhabited, all we saw were a few fishermen and wild goats!
this doesn't look it, but it's a high steep cliff they would drop a line over and pull up snapper.
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HI, Gina,
Thanks so much for my Happy Dance, I did it with you, did you see me? Actually, I look rather like the 3rd woman from the left! Made me smile.
I hope you are not stressing too much over this decision, I think Sylvia has given you good advice. When I was diagnosed I heard nothing about anything except that it was TN, and the MO said Tamoxifen would be of no use to me.
Hope all is well, dear Gina!
Mary
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Hi, Sylvia,
While driving home from Church this morning, I heard that Marine LePen of France is now calling for France to separate from the EU and calling for the return of the franc. I think the announcer called it Frexit, but I might have not heard that right. The movement seems to be spreading! But the wheels of government turn slowly, it's an unwieldy thing. Donald Trump has been moving fast; and you are right, national security is the most important job a president has. Our constitution says that loud and clear. The attacks on him are so toxic that I don't think it would matter what he did, the people that are against him will be against him regardless. One of their complaints is that he made disrespectful remarks about women 20-odd years ago, and yes, I have heard the remarks and they were in very poor taste. However, these are the same people who thought it was fine that President Bill Clinton diddled an intern in the Oval Office, not to mention all the other women! It is just crazy stuff. Another rant is that he and his party are anti-immigrant, that is blatantly untrue; trying to get a handle on illegal immigration is not the same as being anti-immigrant. I have begun tuning it all out to a degree, because much of it is so illogical.
I did not know that Nigel Farage has his own radio show, I will attempt to find it online. I find him to be a compelling speaker, I have heard him several times on a couple of our radio stations when he was over here before the Presidential election, and saw him on TV.
I am glad Theresa May is sticking with her positions, and wish her the best. That is quite a position to be thrust into so quickly after Cameron left. I had not heard that about Trump being afraid to go downwards, maybe he has some vertigo. It is ridiculous the way the media gets on one subject and worries it like a dog with a bone. As if there were no other news in the wide world!
I did decide not to post any more of Chris Woollams' post at this time, don't want to overload anyone. It is probably almost time to receive another post from him anyway.
I looked up "Cancer Whisperer" online and it looks very good. Amazon here only has it in hardcover, I will keep my eyes open for a copy. Will probably not purchase the hardback. Do you have Kindle or do you have the actual book?
You asked about my rotator cuff situation. I have an appt. to see the orthopedic surgeon on Feb. 24, I am going to tell him what has happened since I saw him a year ago, and he will probably do an X-Ray. I am tired of having pain with any activity, my Kayaking adventure in Aruba made it worse as well. I injured the shoulder during chemo, and when I had it checked I was told that all I needed was therapy. That proved not to be true, since it only got worse. At the time I was later checked and found to be worse, I was just not sure I would survive long enough to make surgery worthwhile, so kept dealing with it. Now I am having almost constant pain, and I am beginning to feel like I may live long enough to not want my shoulder to be a pain all the time! I'll keep you informed!
Yes, 3 years since diagnosis, and time does fly by these days! My husband died 2 years ago today, actually last night at 12 minutes after midnight.
Talk to you again soon, love, Mary
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Hi Rhonda,
I noticed you asked me about acupuncture, I do have acupuncture regularly. I like it very much. While you are having it done, and for about 20 minutes after, it is very relaxing while you lay quietly in a darkened room. As for results, my favorite part of it is what it does for my energy level. It is a very noticeable jump in energy that I have afterwards, and I find it amazing. He has started to needle me for neuropathy some of the time, but I can't tell that it does much for it. And it may be a cumulative thing, probably varies from person to person. I try to have the acupuncture done every 2 weeks, but sometimes it's every 3 weeks, and occasionally it will be a month in between. I prefer it every 2 weeks! My doc does the Chinese method of acupuncture, using the energy meridians of the body. I think you would like it.
Talk to you again soon, Mary
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Mary, is a beutiful place Aruba, I love your house!!
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Hello all of u, I find this video I lke to share with u.
Marias
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Hi, Rhonda,
One more quick thing and I have to go: are you rooting for the Patriots today? I am not a football follower but I am going to a small get-together. Mostly I will just eat! Many people here are rooting for the Falcons, only because they are underdogs.
Talk to you later, Mary
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Hi Mary,
I am rooting for the Patriots but am not a big sports fan.
I was born in Mass and lived there 10 years before movin
To upstate NY.I went to college in Mass-Northeastern and believe I influenced my daughter Rachel to
Go to pharmacy school in Boston because we always
Visited there.I prefer it to NYC. Have fun!Food is alwayd
An enjoyment!
Rhond
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Hi, Rhonda,
Congrats on your big Patriots win! It was a great game, loved the comeback, and Overtime!
I noticed in pics today that Tom Brady's mom is apparently battling cancer of some kind, the type wasn't mentioned in the article I read.
She certainly had a great day yesterday along with her son and family, good for her, and I wish her good results from her treatment!
Mary
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Hi Sylvia, Mary and All,
Thank you all for the interesting posts. I am sorry I was away for a couple of days to attend to some personal matters about my family and my job.
Sylvia and Mary,
Thank you for your sound advice on the tamoxifen issue. I still got about two months to think about it and I am still trying to read and learn some more over the internet and in the other threads of the BCO. I am still undecided because i have read a lot of pros and cons about using Tamoxifen.
Just last night, a very close and fellow cancer friend who is working in Dubai and who paid me a visit last December, told me thru a cellphone text message that she had to be rushed to a hospital because she felt severe pains and stiffness in her neck and shoulder where she had her left side BMX almost five years ago. She cannot move anymore! She consistently had problems with lymphedema all throughout after her surgery. She has been using Tamoxifen but because of her heavy work schedule, found little time to exercise and usually has to eat fastfood because of lack of time. I dont know if her lymphedema is related to her taking Tamoxifen. She lives close to a fellow Filipina but they are both very busy with work and seldom have time to see each other.
My friend said she had SEs with Tamoxifen including chemo fog, thinning hair, occasional insomnia, weight loss, bone and body pains. She is very disappointed with what she now feels after almost five years of Tamoxifen but the thing is she has not had a recurrence nor any new cancer primary up to now! Or at least not yet.
My heart is broken to hear her news. She has been very kind and concerned for me. I can just imagine her miseries living almost all alone surviving with just her strong faith in God, in a far away country with diverse culture and religion.
This news confuses me. Can i live a life of Tamoxifen filled with SEs? On the other side, the question is did Tamoxifen really prevent my friend from having a recurrence?
I thought everything after the chemo is gonna be easier but my conclusion maybe too soon.
Ok my post is already long and i will send it before it gets deleted again.
Gina
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Hi again Sylvia, Mary and All,
I'm back. I have browsed all your posts about cancer treatments, politics, vacations, experiences and everything. They're all interesting and it always entertains me to know life goes on, good or bad, happy or sad. I am just praying that with all these different things happening to us, may God continue to lift us up and keep us safe. He knows what's best for us.
I dont want to comment about politics. Just looking at the global news makes me think the world is about to end. Lol! Trump May Pen. Brexit, Frexit, Bshit!!! Our own prex, Duterte, some call him Dodirty! Lol! It's crazy!
Mary,
Thanks for the Aruba pictures. They look nice but why do the background all look rocky? Is Aruba all rocks and seas? I am just thinking. The beach resorts here in the Philippines usually have lush greens in the background. I love fishing! The Patriots won and Tom Brady is gorgeous!!! Lol!!!
Rhonda,
That picture of your grandson Parker is precious. So adorable! Wish you luck on your remaining treatments.
Valstim,
I didnt know you had a previous cancer dx a long long time ago. Wow! I am still scared about Tamoxifen or any of those AI's. I'll tell everybody of whatever i will decide later on. I am looking for options or alternatives, like a combination of Tamoxifen, AI's, healthy foods and supplements to compliment the drugs plus a good exercise regimen.
Kath,
It is good to know your DH is with you thru this rads therapy. Having a loved one with you is so important and a big moral booster. I dont know what i'd do without my DH. We even take our toddler son with us on my chemo. It's messy but it's fun!
Adagio,
I'm excited to see your Mexico pics. Relax and enjoy!
Hi to all the other ladies. I can't remember all the names and I'm afraid to browse back on the posts or my posts gets deleted. I think i already have a DePhobia (short for Deleted Message Phobia). Sucks!!!
Wishing all the best for everyone!!!
Love,
Gina
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PS
I have a question. How do you disable the autospelling function in the text editor here? It is causing a bit of a problem because i have to type over the wrong words which promptly come out as you type the beginning of words. Can anyone help me please?
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Hi, Gina,
I will start with your last question first, about the auto thingy on your phone. And the answer is......I don't know. I assume you are working with your smartphone when you post here? My Samsung phone does the same thing, it always thinks it knows what I am going to say; and often it does not. Makes me mad!! The good thing about it is it fixes typos, although sometimes the words do not end up as you wanted them! I don't know of a fix for it, I even had a tech-savvy teen-ager work on it. We got it turned off on a word or two, but then it came back on by itself.
I do my posting here on an old-school desktop PC, with a keyboard. It is great, I can bring up 2 windows side-by-side, have the post I am answering in one so I can refer back and forth, and my answer in the other. I have the spell-check turned off on it, since I am a pretty good speller. It lets me post long sermons without cutting me off. I do use my phone if I want to post a pic here, and I also have a tablet, which I use to post here when on trips.
So the short answer is, I don't know how to turn off your spell-check auto-fill, whatever it is; I still think there must be a way, but myself and a very smart teen couldn't figure it out. Do you have a laptop or a PC? I really like getting up in the morning, getting my cup of coffee and snuggling into my red desk chair with my mouse. Like I said, old-school!
Not sure what you mean about Aruba, I posted 2 pics. One was of the beach where we were staying, which was beautiful white sugar sand and turquoise blue ocean. That extended south and north of us. One day we went to the northern part of the island, which the government owns and keeps undeveloped. It has a very rocky coast and rough water, and little scrubby trees, but mostly just windswept. It is completely unlike the beaches to the south. And Aruba is a desert island, it gets very little rain in a normal year; so it is not the humid, jungle type of island.
I am very sorry about your friend who is living in Dubai. I am a little unclear about what is going on with her. Why can she not move? Is it the lymphedema, is she not looking after it? I understand it is only manageable with massage, exercise therapy, and perhaps compression. Has she had a cancer scare? I am not quite understanding why she was taken to the hospital, it sounds like she is working a lot, and maybe not getting enough rest. As we know, if you have a cancer that is ER+ (estrogen-receptor positive) Tamoxifen will block the estrogen, thus preventing you from getting another ER+ cancer. But it probably would not prevent you from getting a different type of cancer. I know several women that take it or one of the other similar drugs, it seems to give them a feeling that they are protected. And I suppose they are to an extent. I hope your friend can find an answer for her problems.
I also thought that once I was through with chemo I would quickly return to normal. I was wrong, and I am now a different normal. But you must remember, I am also probably 20(?) years older than you, and you will snap back better than me. I only wanted to say it is a gradual process to recover from the stress of what your body has been through. I guess that's why they call it a "cancer journey."
Yes, I completely agree, the world seems to be in turmoil, and the media love it, and keep things bubbling on the burner. I guess we're just along for the ride!
Talk to you soon, dear Gina. I don't think I knew you had a toddler, how does he like the long chemo treatments when he goes with you?
Mary
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