Calling all triple negative breast cancer patients in the UK
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Hello Helenlouise,
I did know that with TNBC there are three receptors that are mentioned and to be TNBC you are ER-, PR- and HER2-.
I had a friend who was triple positive and so was ER+, PR+ and HER2+. After the standard treatment she had to go on Herceptin injections. Herceptin can cause heart problems but so then can chemotherapy drugs.
What I was asking was where the HER2+ had shown up in your body with the metastases.
You have been through so much and I do hope all will go well with you.
Cancer cells do mutate so it would seem you never know what can happen.
As for nail varnish, I remember clearly that the oncologist said it was not allowed during treatment. I have never worn it so it did not bother me. I have read that nail varnish can cause fungal nail problems.
What will your full treatment be now? I am sorry if you have already written this in previous posts but I am so busy at the moment.
Wishing you all the very best.
Love.
Sylvia xxxx
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Sylvia - good to hear from you - hope you are seeing improvements in Raymond's health. Thanks for popping in!
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Hi Helenlouise,
Definitely no manicures or pedicures, but nail varnish wasn't a problem according to the nurses at the chemo suite. Apparently some women wear black but I managed to find a very dark maroon which would have looked quite chic had I been more practised at painting my nails without going all over the edges. I was the only one icing so it raised a few eyebrows - and smiles. I would definitely do the same again. Good luck.
Gill xxx
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Hello Sylvia,
I guessed you'd be run off your feet caring for Raymond. I hope that he's making steady progress. I also hope that you have visits from the district nurse when needed, as visiting the surgery would be a bit of an ordeal at the moment.
Take good care of yourself Sylvia. Give Raymond my best wishes.
Love,
Gill xxx
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Helenlouise, it's a whirlwind, the cancer journey you're on! You have been through a lot and now to be diagnosed with HER-2 is just another chapter, I guess. You certainly bear it all with good grace, and it is lucky (in a wierd way) to have developed a tumor of a type that has a successful treatment. You know what I mean, I don't want to sound flippant. I am very glad you are feeling upbeat about it.
When I was being treated with chemo, I developed neuropathy after my first bout with Taxotere. So, belatedly, I ordered a pair of the (ice) slippers from Amazon.. They were nice, made of a gel material, and I wore them right out of the freezer. I still have neuropathy however and sometimes wonder if it would have made a difference if I wore them before the first chemo. The Center I was treated in did not recommend them. I tried the regular ice too, but my feet froze. The slippers are cold, but not unpleasantly so.
It sounds like you'll be starting in a few weeks, hope you have smooth sailing!
Love, Mary
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hi Adagio
My shoulder is much better, I think. However, last week after a therapy session i developed a painful neck. I have had a massage and an adjustment (bone-cracking), but I think I will be limping across the finish line when I see the doc in about 10 days. I haven't done therapy for a week because of neck pain but am starting back up, hopefully I will pass her inspection.
The card game we are playing now is Pinochle, we have a lot of fun. The group is changeable, but mostly men, some of whom take things quite seriously. The rest of us are more relaxed and enjoy besting them!
I'm glad your cough is gone, good luck with next scan. Ground glass opacity sounds awful , I hope that is gone too. I hope this Covid19 shakes out soon too, but the vaccine will take a while to develop. I feel somewhat grounded by it also, and I hate that feeling.
Where will your trip take you?
Love, Mary
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hi all, thanks for the tips. I have gone from er- pr- her2- to er- pr- her2+ which as Sylvia said is a change in the tumor. This result was from latest biopsy on skin Mets. Previous biopsy did show low her2 + but it was still classified as TNBC. So I think it may have been mutating at that point. If that correct terminology. Areas of progression are some underarm nodes left and right, left ribs 4 f& 5, left intercostal muscles & a Mediastinal node. Inconclusive on some uptake in the bowel. Whilst my tumor burden is said to be low the Melbourne team explained priority with skin Mets is systemic treatment. As the cancer is in the lymph system important to treat whole body. I am very fortunate as this can be treated with standard / targeted therapy that has a high success rate. I am much better placed than I was, that’s for sure. No trial which is a relief. Will definitely be icing as I already have some neuropathy in toes from last IV chemo. Will try buy some booties and gloves or maybe make them with some gel packs. Last time I was doing chemo they weren’t offering ice. You have to ask. I think some centers may have been sued with people getting frost bite. Will ask about polish. I was told no last time.
Take care all.
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Hello everybody. Good to know that all are well despite the covid-19. Already arrived in Colombia I hope it is not very drastic. We have enough with the corruption in our government that they are now calling for the withdrawal of the United Nations office for human rights.I have been tired and go to the office for a short time. I am rearranging a website that I created in my head but a designer made it to support the young students of the university.
The web is: Apoyoemocional.univalle.edu.co
I think we are very short in supporting young people in these difficult times. Good and there is also a lot of support for people like us who go through these endless treatments, mutations, complications and .. old age.
Now we will have to prepare to support people who have been and will remain in quarantine for many months.I still don't know how you can support people in quarantine yet.
Sylvie, good that Raymond is improving, that you have the visits of the nurse at home and that they do not have to move to receive treatment and indications.
Helenluise I trust that this new diagnosis does not reduce your energy and positivism.
Mary, I hope your neck and shoulder pain are getting much better every day. adagio that good to hear from you.
and Gill you have become a great support for this group. a huge hug for all and my best wishes
Abrazos
Marias
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Hello Marias,
It was so nice to hear from you and to know you are still coping. You have been through so much that it will take a long time to get back to normal.
Thank you for that website you have created. I shall try to have a look at it.
Raymond is making progress but it will take several months of recovery.
Abrazos
Sylvia xxxx
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Hello everyone,
Thank you for keeping the thread going with such care and enthusiasm.
You may all want to have a look at the March 7th edition of New Scientist magazine. There is an article in it entitled An Evolution in Cancer Treatment - Rapid adaptation has helped cancer resist our best treatments. Now it may be the key to toppling the disease. Claire Willson reports. It is a most interesting article. It would be good to know your comments.
I am still very busy here but managed to sit and read this article yesterday.
Love and best wishes to all.
Sylvia xxxx
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Hi Mary,
Hope your shoulder is continuing to heal and that you're managing to avoid the many coughs/colds/sore throats that are around at this time of year. COVID-19 continues to infect more people here, but not a huge number and it hasn't yet found its way to Norfolk. The Bishop, thinking ahead, has prohibited the sign of peace during Mass and the wine is now for priests only. At yesterday evening's Mass there was a large bowl of water and soap placed to one side of the altar for handwashing by priests before giving out Communion hosts. The host to be placed in the hand only. All seemed very sensible to me.
Apparently COVID-19 has caused people to empty the shelves of baked beans, pasta, hand wipes, paracetamol and loo paper. We did the weekly shop on Friday and the shelves were full except for hand wipes and loo paper. I simply don't understand the loo paper stockpilers, I've probably missed something though. Baked beans have been rationed by at least one supermarket as from today! So, all is a little mad here and the supermarkets are making an absolute fortune. It's an ill wind........
You will probably have had the Mass to celebrate your aunt's life by now. I hope it went well and that you enjoyed meeting up with all your cousins again.
Take care.
Love,
Gill xxx
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Hi Marias,
I'm sorry that you're feeling so tired. Even so, you've managed to create a website to support young students. Support for the young is much needed, times are difficult everywhere it seems. In Britain our University students are often left without emotional and psychological help and the suicide rate has risen. A University education has become very expensive here and students are stressed out by the debt. Along with this, lectures have been cut short and students are expected to work by themselves for much of the time, so it can be very lonely and depressing for them.
The political situation in your country sounds frightening, especially if it's withdrawing the United Nations Office of Human Rights. Many nations ignore human rights these days. All these power crazed men in so many parts of the world!
Good luck in finding a way to help those people quarantined by COVID-19. In the meantime, keep safe yourself.
Love,
Gill xxx
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Hello Sylvia,
Thank you for the information about Claire Wilson's latest article on cancer treatment. I don't buy 'New Scientist' any more and of course we only have access to the first part of online articles unless we subscribe. The main library in Norwich will have a copy, I'll see if I can visit later this week.
I do hope the weather down in Exmouth warms up so that Raymond can spend at least some of his recovery time sitting out of doors. Keep well both of you.
Love,
Gill xxx
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Hi Sylvia
I did look up the New Scientist article you mentioned but found it to be cut off, as Gill said. There were some interesting articles, interesting enough that I checked out a subscription and found it to be quite expensive and it comes weekly. Since I already have too much to read I won't subscribe but if I see it in a magazine stand I may buy a copy now and then. I have not been to the library all winter because last time I was there I noted some people sneezing and coughing as they used the library's computers, and the magazines had all been much handled. I do think going through chemo made me much more of a germaphobe than I was before, not that I am a phobic house keeper but i figure these are my own familiar germs! I took a friend to a large superstore yesterday and tried to keep track of every surface I touched but quickly gave up. It was only an experiment, and I decided the only solution would be to wear gloves, and constantly change them. I am not going to do that, but will be as careful as possible in this year of a novel virus.
I am so glad Raymond is getting better, does he talk about the whole experience? It sounded frightening on so many levels. Its so good that he is safely home.
I am off to another therapy session, next week I have 6-month check-up with doc to be evaluated. Fingers crossed!
Talk to you soon, love, Mary
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Hi Maryjv,
I was just wondering how your weekly taxol treatment was going. You seem to have sailed through everything so far, I'm hoping this will be the same. Keep us posted.
Love,
Gill xxx
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hi Gill
Our church routine is the same as yours now. The wine is not being offered, (I never took it anyway) and the Sign of Peace is voluntary, although I never knew it was a mandate. I never cared for the hand-shaking, since the same people doing the peace sign were, about 15 minutes later, standing outside of church discussing their neighbors' foibles with much gusto.
I think you answered your own question about why people are frantically stocking up on toilet paper when you said that beans were another product being stockpiled! An ill wind indeed! Just kidding, I noticed that yesterday at the big box store, toilet paper and paper towels were all gone, and not to be restocked for days. Strange though, when the smaller stores down the road still had lots of the paper products. I also don't exactly understand the stockpiling of bottled water that is going on, since a possible quarantine for covid19 doesn't exactly correlate with no electricity to pump tap water. Oh well, just the latest Crisis! Our State now has 1 confirmed case, a lady who just came back from Italy. Which begs the question, what about all the other plane passengers?
Anyway, stay well, and I am off to PT. Love, Mary
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Hello ladies! Sams club in SanAntonio def out of toilet paper and other cleaning essentials! Reading all of your wonderful post and hoping everyone continues fighting this battle.. I just completed taxol #3 feeling numbness on fingertips and hands fallin asleep at night...my counts are low right now...my MO says we will stop chemo soon if the side effects progress 🙏❤️ next phase surgery
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Hello Maryjv,
Cleaning products are very low here too, I keep my stocks of soap and cleaning materials up anyway, so I'm probably alright for a few weeks.
A lot of patients do develop numb fingertips and toes. I was one of the lucky ones. I iced, but don't know if this helped. Hope your counts improve enough for your chemotherapy to be continued. I was told by my specialist nurse that the first dose of taxol was the most important one.
Love,
Gill xxx
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my MO informed me that 90% of treatment was AC, taxol she referred to as “icing on the cake” her concerns are irreversible neuropathy and quality of life...taking it one day at a time 🙏❤️ Glad to hear the first taxol is the most important!
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Hi Mary,
Toilet paper, baked beans, ill wind, why didn't I think of that? Michael and I are travelling to Nottinghamshire this weekend for our granddaughter's second birthday. There are now seven cases of COVID-19 in Central Nottingham and one case at Loughborough University where my son-in-law lectures. We still plan to go, but will check on the situation beforehand. I was looking forward to Spring and the end of the cold/flu season just a few short weeks ago.
Agree with you about the sign of peace, doesn't improve some people's behaviour at all - especially when it comes to the Cathedral carpark it seems. We've always been told not to drink from the chalice if we wear lipstick, I do, so I don't. Always thought it was unhygienic.
I was told by my physiotherapist that after mastectomy, shoulder exercises should be continued for the rest of my life. I wonder if the same applies following your shoulder surgery? If I stop exercising for more than two or three days my left underarm becomes quite painful.
Nothing much happening here, coronavirus has taken over from the latest exploits of Boris Johnson /Harry and Meghan, as the population's topic of choice. Wish something cheerful and uplifting would happen.
Keep well,
Love,
Gill xxx
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Hi Maryjv,
You have a very sensible MO. Quality of life is massively important to most patients and peripheral neuropathy is difficult to cope with on top of all the other side effects. As you already know, chemotherapy usually works extremely well on triple negative tumours. I didn't know that taxol was just the 'icing on the cake', my doctors told me very little and there wasn't much time for them to answer my questions. I found this thread to be a really good source of information, the rest I googled. Will your surgery be put forward if you discontinue chemo?
Best of luck.
Gill xxx
Gill xxx
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I go back on Monday...the numbness and the hand falling asleep is horrible but trudging along! I have moved my my apts with my plastic surgeon and surgical oncologist for next week and will determine next steps soon...staying positive and praying for these taxol treatments have been effective! 🙏❤️
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Hi, Maryjv
Glad you are moving along through the routine pretty smoothly, except for the neuropathy. It happens often with the Taxotere/Taxol. I have it too, although the strange feelings in my feet (numbness, tingling, stinging) are much better than they were; what is still with me is a weakness in my upper legs. I hope yours goes away in time and doesn't bother you too much if it doesn't.
Love, Mary
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Hi Gill
Your wish for something cheerful and uplifting is still not coming true, seems to be getting worse. Now we have a travel ban on EU travelers, as of last night. The President declared this, I'm sure on the advice of Dr. Anthony Fauci, the chief doc on the case who specializes in Infectious Diseases. I read that EU infections are set to get to a much higher count. As I'm sure our count will too, this virus seems to pass around quickly.
Yes, therapy at home is recommended for at least 6 months after being released from guided PT. And probably better to do long-term. I did not do therapy properly after mastectomy because of my husband's health problems, and maybe that's an excuse and I didn't take it seriously because it wasn't presented to me as a serious need. My PT Therapist told me that now mastectomy patients are sent to therapy and instructed in how to go forward with it. I mention it because my tight pectoral muscles (probably because of mastectomy) have been an issue in my recovery.
Stay well Gill! Love, Mary
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Hi Helenlouise,
I was wondering when you start your chemo? Everything seems to have moved very quickly for you so I'm guessing that it will be soon. Hope the side effects are much less than last time and that the icing helps.
Best of luck.
Love,
Gill xxx
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Hi Mary,
Yes, our coronavirus count is steadily rising. Only 10 deaths to date and they were older people with comorbidities. The UK has moved from the 'containment' phase to the 'delay' phase, but apart from some panic buying life goes on pretty much as usual. One comedian, has dubbed this as the UK moving from the 'miffed to peeved' phase. I think John Cleese thought that one up to describe Britain's security levels during terrorist attacks. There's some talk of cancelling sports fixtures also 'losing loved ones before their time' from our esteemed leader, other than that we just have to 'keep buggering on' as Churchill would say. I think everyone here on the thread is well used to 'buggering on' so we're well prepared.
I really think our mastectomy patients ought to be sent for physiotherapy after mastectomy. Mine was included in the price of my private surgery. I think the NHS just gives patients a leaflet. I got on well with my physio after the initial shock of meeting her. She was a large muscular, jolly hockeysticks lady with a no nonsense look. However, she was so funny and good humoured that I enjoyed every minute. I'm not saying that all doctors, nurses, physios should be comedians, but a sense of humour works for me.
I can't remember if I mentioned that we had planned on travelling up to Nottinghamshire for my granddaughter's birthday She'll be two. Anyway, our daughter has banned us! Apparently it's too risky especially as there's coronavirus in Nottingham and also her two little superspreaders running around as well as her seeing patients every day. I'm so disappointed, but I suppose it's the sensible thing to do 😇
Keep on with the exercise and stay well.
Love,
Gill xxx
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Hello Sylvia,
I do hope Raymond is continuing to improve and that you are taking the time to rest. I read that Devon is a hotspot for Coronavirus, though the number is still extremely low. I know that you'll be well prepared as far as it's possible. Hospital visits for Raymond, if planned, may be a worry though.
Keep well both of you.
Love,
Gill xxx
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hi Everyone
Hope u are all well? Cruise and trip to the Uk has now been postponed (was due to go in 3 weeks) due to many borders being closed. We have been madly setting up fever clinics and fielding the media driven frenzy that comes with this influenza like illness. I’ve been working 12 hour shifts talk to GPS and attending a never ending supply of meetings to work on contingency plans for the area as well as try to complete an epidemiology unit for uni.
It was interesting to note how the UK differs in its approach to the rest of the world in try to contain this virus and coping with the media driven frenzy in stockpiles of loo paper and hand sanitizer. All I can say to u all is there is a light at the end of the tunnel. The death rate for this virus is low. It seems to be severe for the elderly and the immunosuppressed and most people are recovering. Men are disproportionately affected and those men over 65 seem to be more severely affected than women. Children under 10 are not developing severe disease. Most cases are also positive for flu a and b.
Those of u who are on chemo take extreme care. Do not frequent mass gatherings and practice social distancing at all times. The northern hemisphere has been through winter which is a plus! Less risk of coughs and colds. I have all of the info produced in Australia and seem to be talking at a multitude of forums for GPs as well as answer calls from our health direct lines.
Let me know if u want some of the hyperlinks uploaded to review. Try and enjoy ur Sunday and stay well!
Much love
Kat
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Hi Kath,
I think many of us here will be grateful for your down to earth, sane COVID-19 information. The tabloid press has been working hard on hyping up the panic which has resulted in panic buying and the spread of misinformation. Our national strategy, informed by Chief Medical Officer Chris Whitty has not gone down well with WHO or the public. Changes to policy were announced by Boris Johnson yesterday which may include 4 month isolation for the over seventies. Schools are to remain open.
GPs have been developing their own strategy for safeguarding their staff and patients and many practices are closing down pre-booked appointments and replacing them with phone calls. Patients who feel that they must see a doctor face to face will be triaged. Most surgeries around here are doing this as is my daughter's surgery, though her on-calls are a concern. The UK Government is not prepared and the NHS simply doesn't have the resources.
I'm sorry that your much looked forward to cruise has been postponed. It looks as though you're going to be very stretched for the next few weeks or months, so you will need your holiday when everything calms down. Good luck with completing the very useful epidemiology unit at the same time as having wall to wall meetings!
Any links or additional information you have would be very useful.
Keep well.
Much love,
Gill xxx
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Sorry to hear of the cruise cancellation Kat but better to be safe for now!!! I am on weekly taxol, go back tomorrow for #4...this has been tougher for me than AC! Seems to be really impacting my vascular system.. nose bleed, aggrevated hemmoroid, neuropathy. Will discuss with MO tomorrow; also gonna ask about STD since my counts are low and I work in a dialysis center. Praying for everyone to be safe and that we can al get through treatments during this pandemic!🙏
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