Calling all triple negative breast cancer patients in the UK
Comments
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Hi, Susie
I see you've started the radiation treatments, good luck with all that. Sorry about the arm pain you are having, just try to think someday this will all just be a memory. One that you probably won't want to think about!
Do you like the Aquasize? Does that have to be doctor-prescribed? I think I need to do that this winter, if I can find somewhere to do it here, this area is not big-city, we are lacking a lot of things.
Only 17 treatments to go, you are making progress!
Later, love, Mary
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Hi, Helenlouise
I have heard about the side effects of Xeloda before, as when you mentioned your fingertips cracking. My husband at one time had his feet break out in big blisters and the only thing that worked was urea cream. His condition was not caused by Xeloda, we were never sure why he had this. I am glad you have found some good cream to treat with.
I am sorry about the issues you are having, but I think your attitude is great! You will be finished with it all in time to enjoy spring is another way to look at it. I know the low neutrophils probably make you quite wrung-out, and the radiation burns are painful, I feel for you and I'm sure we are all with you in spirit.
Hang in, talk later, love
Mary
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HI, Sylvia
I had 9 hours sleep last night, feel better today. I was incredibly painful yesterday, and sure enough, we had a cold front pass through last night. I always forget to factor that into pain occurrence, it seems to make a difference because of the barometric pressure. I don't think I'm crazy, my acupuncture doc says he has several patients who tell him the same thing, he believes! Today the pain is localized to knee, and lower back mostly.
I had a dream last night and an old boyfriend appeared in it, who I hadn't thought of in years. When I woke up I was thinking about it and I realized that the man in the dream was actually Kit Harrington, an actor who appears in "Game of Thrones." (I'm pretty sure you don't watch it, since it is a fantasy/sci-fi/drama series on TV.) It's fine with me, since he may have helped me have a nice long sleep!
It's good you posted the info on radiation, since Monica, Helen and Susie are doing radiation now. If I missed anyone having radiation now, please forgive. If you recall, I did not do the radiation treatment, so missed out on all that fun. Flora's mother is having some rest before continuing treatment, and Gill is waiting for a second opinion next week. Nancy52 has opted out of chemo so is moving on with her life, she did post not long ago however. I do wish we could hear from Hanieh. Adagio seems to be always busy with family and travel, I'm sure she is fine.
I am not sure I mentioned this but while on Alaska trip we met a lot of Australians. Two Australian gentlemen in particular were very charming, and friendly to the point they gave us a phone number to call when we arrived in Sydney, Australia if we take our trip there! One of them turned out to be a research physician, and his area of interest is TNBC! I thought that was quite a coincidence, and he seemed quite congratulatory on the fact that I was standing near a mountaintop in Alaska. He asked how far I was from diagnosis, and I told him my dates, and he said that was very good.
I think I will end this hodge-podge of a post, and get on with things. Talk to you again soon,
Love, Mary
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To all:
This was in my in-box today: an article about how to help symptoms of radiation treatment problems.
https://thetruthaboutcancer.com/prevent-radiation-...
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Hi Mary,
Most gyms with a pool have Aquacise classes. They are very popular at my gym, so much so that I have to be on my toes to get booked in each time.
Radiotherapy much better this afternoon: seen bang on time and out before the arms got too sore. 4 down, 16 to go.
I had a kaftan in the early 70s, full length one. I must have looked a sight!
Susie
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Susie
That cartoon is awesome, and probably true! Made me laugh!
I checked today at the gym I go to sometimes, they have a small pool but it is doctor-orders only. I would have to join a different gym with a regular-size pool that offers these classes. I have been told by orthopedic doc that is about the only exercise I can do regularly, because of knee problems and neuropathy weakness. So far I have just been walking but it is painful after doing as much as I like. Also my legs go weak because of the neuropathy ugh. I suppose another solution is to ask the ortho doc to prescribe aquatic exercise then I might get in the small pool at my gym.
Congrats on getting another radiation done! Woohoo!
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Hello Mary,
With reference to the Alzheimer's series that you mentioned, I think this is probably Ty Bolinger. I think it is good that the emphasis was on lifestyle, diet, exercise, sleep etc. I think this is the basis for all chronic diseases and things in life that we can control to a certain extent, but there are environmental factors that are much more difficult.
I do tend to switch off when any type of drug is mentioned and new wonder drugs are mentioned. I do not like the idea of that injection mentioned for Alzheimer's, as I do not believe in magic bullets. These drugs are all great money-makers for the drug companies and they will have side effects.
I was glad to know that your brother was able to drive to your house. I agree with you that his recovery will take time.
Take care.
Love.
Sylvia xxxx
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Hello Monica,
Thank you for your post. I read it with great interest and was glad that we are picking up from our last posts about lymphoedema. I do like to keep everything in order with the posts and not leaving loose ends.
I think it is a really good idea that you are attending these sessions.
Thank you for posting pictures of the exercises that have been recommended. I have looked at them carefully and they tie up with advice I got from a private lymphoedema therapist. I was very lucky to be able to phone her as soon as I saw the swelling in my hand and arm, just two days after having a flu injection in the other arm. I knew her a little from the charity FORCE in the grounds of the hospital I attended in the past. She told me exactly what to do and what not to do. I did have one consultation with her which I found very useful but it was expensive, so it was a one off for me. I waited a long time to get my appointment with the NHS but I was satisfied with what happened at that appointment. The exercises I have been told to do are much the same as those you have posted. It is important to do them slowly.
Thank you for posting the picture of that proper measuring tool. I have been trying to find one online that I could buy in the UK, but so far no success. I have been measuring with an ordinary tape measure. My right arm is not that much different to the left arm and remains constant whether I wear the sleeve or not. I am much happier without the sleeve and have hardly worn it in the past four months. I do the exercises and I also do the manual lymph massage. I find this massage very useful. Have you been shown how to do it?
I have an appointment at the NHS lymphoedema clinic in Exeter on October 16th. I am thinking of asking to be discharged. My swollen hand normalised almost immediately and the arm is not that swollen. It all got a bit complicated because of the mole surgery. I think the problem mole was probably caused by the radiotherapy.
I do hope you will soon be able to walk without the boot. This neuropathy condition as a result of cancer treatment is quite strange. My feet are numb, and the podiatrist says there has been no change. I find it odd because if I do happen to tread on anything on the floor, even a couple of seeds, I can feel it. I feel nothing when the podiatrist has me close my eyes and prods the soles of my feet.
I suppose we just have to get on with peripheral neuropathy and lymphoedema. It is the price we pay for cancer treatment that has kept us alive.
All is well with me here in Exmouth. We are still having very little rain, which is most unusual. I do not particularly like autumn, as I see it as the messy season with leaves falling about everywhere. I was glad to know you are enjoying the autumn weather in Northern California.
I saw an interesting programme last night with Dr Mosley about back pain. He had about 100 or so patients with back pain, and they were told they were trying out a pill that would bring relief from the pain. They were told some would have the real thing and others would have a placebo. In fact they were all given placebos. After three weeks they all came back to relate what the pills had done for them, and were told that they were all placebos. Before this about 70% had said they had experienced no pain. That just shows you! It was all about how the brain can produce its own pain relief, which is much more effective than any pain killers! I did not know quite what to make of it. Dr Mosley and his group of doctors are serious authentic doctors. He has written quite few books and has had lots of programmes. He cured his own diabetes and has shown how to do this. He has done a very interesting programme about alcohol and the damage it does to the liver.
That is all for now, Monica, but many thanks again for a most informative post.
Love.
Sylvia xxxx
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Hello Flora,
Thank you for those tips about food. I think most of them would be already known. The most important is to get a really good mixture of fruit and vegetables. Seeded grapes have been quite difficult to find, but last year I was able to find them easily at my local supermarket. Apples of whatever type are an important prebiotic and so important for a healthy gut. Antioxidants are widely available in all sort of fruit and vegetables. I eat mushrooms very regularly and get all different kinds. Kiwi fruits are supposed to have more vitamin C than citrus fruits and I do buy them. I must admit I have not tried eating them with the skins on. I tend to buy organic ones and it is the same with carrots, which I often eat with the peel on, as I do potatoes. I do wonder about mushrooms on the window sill. The best source of vitamin D is a little bit of sunshine. As for mushrooms I often buy the little brown ones and it says on the box they are rich in vitamin D.
I think that with your mum it is best to let her decide about her chemotherapy. She is on the receiving end. All chemotherapy drugs are toxic and will have side effects, whether short or long term.
Take care of yourself.
Love.
Sylvia xxxx
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Hello Mary,
I am still trying to catch up. I have one more of you posts to answer plus the one with the link that is addressed to all of us.
I shall try to answer it later today or during the weekend.
Love, Sylvia. XXXX
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Hello Helen (Helenlouise)
Thank you for your latest post. I shall try to answer later today or during the weekend.
Love.
Sylvia xxxx
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Hello Monica,
I was just looking back through your details and wanted to make sure that we all know who is doing what. Are you still doing radiotherapy or have you finished? I thought that Helen and Susie were the only two now doing radiotherapy.
Love.
Sylvia xxxx
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Sylvia,
Just wanted to clear up a few things re: the series on Alzheimer clinical trial.
The series on Alzheimer's was not done by Ty Bollinger, it was just in the same format as his series. The drug that the doctor said is going to start testing on humans is not considered a pharmaceutical, but a neutroceutical (sp), meaning it is made from a natural substance. It supposedly will have minimal side effects, but that remains to be seen in humans. It is made from astralagus or a plant closely related, I believe. Sorry, I was not taking notes. This was a research MD who has done extensive Alzheimer's/dementia research, Ty Bollinger is not a doctor. The different parts of the series were interviews of some docs and some "experts".
I do know that just because a drug is made from a natural substance it can still have side effects. (example: taxotere made from the yew.)
Monica is finished with radiation treatments, I misunderstood a post and got it wrong.
Talk soon, Mary
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Hello Mary,
Thank you for your latest post. I still have your previous one to answer and the one with the link.
Thank you for the explanation about Alzheimer's/dementia research.
As for Ty Bolinger, yes, I know he is not a doctor, but I think when he does his programmes his information comes from doctors etc. Raymond and I did have a lot stuff land in our emails, from Ty Bolinger, that were all about vaccinations.
It is true that lots of drugs are made from natural substances, but once they are converted who knows what happens? I think I am right in saying that aspirin came from the willow tree and as you say the taxanes are made from the yew tree and an immune booster, such as Pycnogenol, came from the Maritime Pine Bark.
As for astragalus, it is old and well known as an immune booster. I had it in the past in powder form within a capsule. You could either swallow it or empty it into a cup and make it as a tea.
If you have the name of the programme about Alzheimer's I would not mind having a look at it.
You know I always appreciate and respect anything you have to say.
I have to go out now, so I shall try to catch up later.
Best wishes.
Love.
Sylvia xxxx
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Sylvia
I cannot copy the link here, it's possible that one could go to awakeningfromalzheimers.com and get to the series. It is necessary to put your email address before you can do it, which will then probably bring you a flood of mail, although it looks like it might be easy to unsubscribe.
Anyway, they say the entire series will be re-shown this weekend, then that's it. I did not see all of it, what I saw was touting proper nutrition, exercise etc. The last episode is the one that really caught my interest, and I did hear most of it, the doctor answering questions is Dr. Michael Fossel. The interviewer seems a pleasant woman too. Apparently this weekend you can pick whatever episodes you want to watch.
Not sure if it will work for you! Good luck with it, I know you are busy with a lot of things, and then it's also time for some downtime on the weekend. If there is really anything to it, I guess we will hear about it, the doc in the interview seemed very confident and said it would be a shorter trial than normal.
Later, love, Mary
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Hello Helen.
Thank you for your latest post. It was interesting to read about the Moo Goo skin milk cream. I do hope your skin will heal nicely.
It must be difficult having radiotherapy treatment and Xeloda at the same time, but at least the radiotherapy is behind you and you can concentrate on getting through Xeloda. You have been through such a lot.
Are you being given any Neupogen injections to help with low neutrophils? What is being done about the cracking on the fingertips and tingling in your arms? The tingling could be peripheral neuropathy.
It is true that February seems a long way off, but, as you say, we just take one day at a time.
Sending you very best wishes.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post on October 4th. I think it is important to post all the information we can on radiotherapy because it is dangerous treatment and patients tend to think it is easy because the treatment is so quick, but, just like chemotherapy, the side effects build up as treatment goes on and there can be long term side effects. I think some of the most important information about radiotherapy is on Cancer Active and it is always updated. I found the in depth sheets on radiotherapy (20 ways to improve your radiotherapy experience), the ones on chemotherapy (10 ways to improve your chemotherapy success and reduce side-effects) as well as the ones on immunotherapy (Comprehensive review Cancer Active immunotherapy) really useful and informative.
I know that we follow all these emails but I do not know if others have subscribed and are following all this information. I think it is far better than just looking up things on Google.
I have been thinking about monoclonal antibody drugs and immunotherapy ones in that the drugs often seem to have the same word endings!
It has sometimes been difficult following the different treatments with the group, because some people have not put their details under their profiles. I think there should be a more simple way to do this, as some people find it complicated.
At the moment it seems that Susie is going through radiotherapy, Monica has finished, and so has HelenLouise, who is now doing Xeloda. RosieCat (Gill) is trying to get some chemotherapy treatment. As for Flora, her mum is resting from chemotherapy and Ellen with her 81 year old mum has not been in touch for a while. I do hope I have got all this correct.
I have doubts about whether we shall hear any more from adagio, Marias, Hanieh, Gina and Val. I think they may all have moved on.
I saw on several threads an interesting post from a man from Korea, posting on behalf of his wife. She is TNBC, metastatic, has had different drugs, some of which I have never heard of, and I felt I could not be of any help.
I was very interested in what you had to say about that Australian doctor. Keep hold of that phone number! It would be so useful to know what he thinks about breast cancer with TNBC receptors!
When Raymond and I went on that Inside Passage trip, many years ago now, I was intrigued when I went on deck and found myself face to face with a real live Texan, complete with hat, jeans, boots, spurs and the accent!
It is Saturday, and here I am trying to catch up with the posts. I am trying to take weekends off, because weekdays are busy. I have so much to do as a volunteer director here and Raymond does a lot here, too. We have both been directors in the nearly seventeen years since we moved in retirement (ha, ha!) to Exmouth, Devon. It is raining here today and I am so glad!
That is all for now.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for the link about radiotherapy. I have just had a quick look and it looks interesting. Raymond is going to print out the 10 pages here so that I can look at it away from the computer. I do not like sitting at the computer for long and it is very bad for not only eyes but also posture.
It will be interesting for me to compare this information with the information sheets I have printed off from Chris Woollams.
All the news here is about the Judge Kavanaugh. What do you think? It is also all about Brexit. I think Theresa May is about to cave in to the EU bureaucrats. What an embarrassment she was at the Tory Conference. I do wish there could be some more gravitas and seriousness in this government.
I was so upset to learn of the death of Charles Aznavour. He was one of my favourite singers, along with Edith Piaf.
That is all for now, except to say that I still have your latest post with which to deal.
Have a good weekend.
Love.
Sylvia xxxx
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Hello Susie,
Love the cartoon. Showed it to the husband who now thinks he has a valid excuse to give up on the healthy eating, no sugar diet I've landed on him.
You seem to be whizzing through the radiotherapy. Hope the side effects are few. Maybe the arms have given up fighting and will start behaving themselves.
Gill X
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Hello Gill,
It is getting a little easier (touch wood). I also got the very welcome news that I don't have to have another CT scan next week to plan the boosters in week four. They've decided they can continue with the existing one.
5 down, 15 to go.
Good luck tomorrow.
Susie
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Hello CocoonCat,
It was nice to see you on the thread and I just wanted to wish you all the best with your radiotherapy treatment. Keep looking forward to the end of October when it will be behind you.
Thank you for the explanation about your stage.
Try to take one day at a time and try not to worry. You will get through all this and get back to a more normal routine.
Love.
Sylvia xxxx
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Hello Sylvia,
I was interested in your list of the possible causes of breast cancer on page one. Like most people with cancer I can't help analysing what may be behind mine. I'm deeply suspicious about the vast number of chest xrays I had as a child. Aged ten, I was sent to an orthodontist who fitted a brace to pull together the teeth in my upper jaw. Every two weeks he did an xray to see how well it was doing - he could easily have just taken a look, as orthodontists do today. The low dosage, xray used to look for cavities nowdays had yet to be invented. My large xray took in my skull and upper chest area.I've wondered for many years why this awful man took such a risk with my health when it just wasn't necessary and no-one else seems to have had this experience.
You also noted that you'd found that statistically more African and Hispanic women were diagnosed with triple negative than those from other parts of the world. My research shows that while the incidence of metaplastic breast cancer is extremely low in most countries, American women of African ethnicity and Hispanic women have a higher incidence. Most of the serious research studies are from the USA and the most hopeful is from the Methodist Hospital study in Houston. Trials are in the second year and look very hopeful. The aim seems to be to switch off the cancer and treat the disease as a chronic condition.
I too have looked at mistletoe extract and noticed that it's still in use. To date, I haven't taken anything extra other that turmeric with black pepper.
There was an awful lot of effort on your part, in pushing this thread forward, especially in those early days. I became very engrossed in Josephine's story which sadly ended on page 19. What an inspirational woman she was. As you say, most will have moved on and have survived triple negative. It would be good if they dropped in from time to time though.
I did find Dulcie on the metaplastic site, which seems to have fizzled out. She was in poor health before being diagnosed with cancer and had mets.I did send a private message to someone who had been a regular poster but had dropped out for a while and we've become friends. She has survived metaplastic cancer with the help of heavy chemotherapy. While she does have a few side effects, she enjoys life to the full and even worked during chemotherapy. Her support and the support from this site have been critical. The medics, it seems, do not always have the information that they ought to have. This has come as quite a shock to me.
I'll sign off now as the house, garden and cats are crying out for some attention.
Love,
Gill X
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Hi Mary,
I remember flower power so well. I loved it. At last we could cobble anything together and look the part. The swinging sixties were far too expensive for me. I wore a long orange kaftan with a hood. Bought it off the market for small change and I still suspect that it was made of curtain material. Also wore a flower in my hair, long necklaces which I made myself from tiny beads ( made a small fortune selling these at school) and walked around with a gormless expression on my face, hoping it came across as love and peace. Oh the fun we had and it cost nothing.
I'll let everyone know what happens on Monday.
Love,
Gill X
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Hello Susie,
Congratulations on the good news. End of treatment in sight now.
I'll let you know what happens tomorrow.
Gill X
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Hello cocoonCat,
So pleased you dropped in to update us.
I do think it's a great relief to have a contingency plan, it saves so much time. Like you, fingers crossed that it won't be needed.
Interested in what you've said about staging. My Surgeon told me that he doesn't take too much notice of stages and I've noticed on this site, often a stage 3 does just as well as an earlier stage. Don't dwell on it too much - I know, easier said than done. Please don't worry about not noticing the cancer earlier. In no way is that, or any part of your disease, your fault. I've lived healthily, never smoked, only the odd glass of wine and here I am. It all seems a bit arbitrary and very unfair.
Keep on keeping on, take each day as it comes and try to include some quality time, a walk, a special meal perhaps. I usually buy a new lipstick, earrings or a scarf when this cancer beast is getting me down. But then I'm very, very frivolous.
Good luck. Sending you positive thoughts.
Gill X
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Hello Mary,
With reference to your past post, Raymond tracked down the series and signed up.
I have not had time to look at anything yet, as I have been busy and do not know where the weekend has gone. I shall try to look at the last part of that video series this evening. I do think that all types of dementia are the worst thing that can happen to anyone. I have been around people with dementia and it is heartbreaking.
I think I am up-to-date now. I do hope other people in the group are taking the time to track down some of the information that is being provided on here.
Raymond printed out some sheets for me entitled Geroscience. It is about Dr Michael Fossel on telomerase therapy in cancer, Alzheimer's and more. I have not had time to read it yet. I did read some years ago about telomeres and how they shorten as you age. This is not a good thing, apparently.
I do hope you will have a good week and I do hope all of those going through treatment will do well and keep looking forward.
Thinking of you.
Love.
Sylvia xxxx
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Hello all,
Thank you for comments and replies, Mary, Sylvia and Cooncat
. I am not having any specific treatment for low neutrophils, just extra time off Xeloda to allow my body to recover. The tingling is interesting and intensifies as I take the chemo then dissipates once I get to the rest week/s or has so far. I have some peripheral neuropathy as well so I find opening things difficult and have been told to avoid any repetitive actions with hands and feet. Things like jogging or chopping masses of vegetables can bring on the hand foot syndrome that Xeloda is known for. Some recommend urea cream but I have nurses and doctors say any cream will do the trick just keep moisturised.
Cooncat my medical oncologist didn't think my radiation oncologist would allow me to proceed on the Xeloda but he said why not! Let's see how it goes. I think I was lucky I had an extra week off the chemo and that got me through. Apparently the chemo can intensify the burning and I must say I am fairly burnt, mainly above my clavical and I have a nasty exit burn on my upper back (where the radiation has gone through my body). Hopefully I don't blister.
I have noticed some minor swelling in my forearm so am using a compression bandage (provided by the physio). My axillia is very red from overflow of radiation to the chest wall. This can bring on lymphedema. Fingers crossed that doesn't happen. We are doing lots of manual lymph drainage in an effort to keep everything moving as it should.
Sometimes it feels like there so much going on with treatment and other times I forget I am even having treatment.
It's great to have this place to talk the nitty gritty.
Lots of love and best wishes to all xx0 -
Hi Sylvia
Interesting reading isn't it ?Sorry about being not being able to open the other link I must not have copied it correctly. I've included another one below which are the national communicable disease guidelines for Public Health Units and they are very comprehensive. I have good days and bad days here still although my mood is improving as the weather warms. I'm still very achy and tight and get muscle knots and cramps regularly which take me down that rabbit hole but learn it to cope a little better with them now. Try to be logical! Aches and tightness worse when I sit for too long at a computer or drive too far!
Try this link for flu vaccine. There is some interesting info re influenza. There is some good info there htwww.health.gov.au/internet/main/publishing...
Have input up some pics of my daughters new dog Bentley ha ha. At a bush barby with us Hpe everyone is well?Much love
Kath
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Hello, all
I've just signed up for this free, online course on food as medicine. I thought some other people might be interested.
https://www.futurelearn.com/courses/food-as-medici...
Susie
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