Calling all triple negative breast cancer patients in the UK
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thanks Gill, it is frustrating, this one-armed way of life; I think bald men with wives probably have a much easier time with this surgery.
To finish the article on submissions to NICE (from a member of their own submission team).
4. There is very good evidence that adjusting omega-3 and omega-6 levels helps prevent and treat breast cancer.
NICE: We are not covering omega-3 and omega-6 levels.
5. Review the effect of Vitamin C--delivered intravenously, liposomal or in normal capsules--to prevent or treat breast cancer.
NICE: We are not covering Vitamin C.
6. Review the effect of Vitamin K2 on prevention and treatment of breast cancer and DCIS.
NICE: We are not covering vitamin K2.
7. Review the ability of curcumin to destroy cancer cells and promote healthy cell function.
NICE: We are not covering curcumin.
Doctors here in US do not counsel nutrition or supplements well either; the larger hospitals have dieticians who counsel low-fat, low-sugar etc. My acupuncture doc does counsel on nutrition and supplements and he sells a line of these in his office. But only if asked, he is not pushy.
This latest issue of WDDTY is November.
Off again, this time to therapy session.
HOLA MARIAS! I hope you and your mom are doing better, at least you are together. Abrazos, ♡♡
Talk to all later, love, Mary
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Hello Sylvia,
Baby shampoo just makes matters worse in my case. I use a lot of conditioner, but the frizz remains. In the 70's this would have been fashionable, now I just look like an old lady. I have two wigs, so don't have to reveal the reality to the general public yet. I know that when we have cancer, hair should be the least of our worries. I doubt if there are many women who come to terms with hair loss though. I find my feelings all the more perplexing because the loss of a breast doesn't bother me at all.
Johnson performs so badly at the dispatch box that he now avoids it. He didn't turn up in Parliament yesterday, he used Twitter instead! I have lived through many Prime Ministers, but not one comes anywhere close to this individual for dishonesty. His contempt for the poor, the sick, for decency and for his marriage vows is breathtaking. Yet the majority of the public will vote for more of the same come election time. I despair.
Like you, I'm not surprised that NICE comes back with such negative responses. On a completely different tack, don't take the negativity as a given. For example, NICE guidelines are sometimes quoted by doctors, in order to avoid expensive treatments. I would strongly advise patients to read NICE guidance themselves before accepting that doctors are indeed complying with them. Also check treatment protocols in other hospitals. Patients in the UK don't have to accept the 'postcode lottery', find out if other hospitals are offering the treatment that you need and ask for your care to be transferred. I did this and while it was a complication that I didn't need on top of a cancer diagnosis, I did get everything I needed in the end.
Bright and sunny here.
Love,
Gill X
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Hi Mary,
Your email to Sylvia is full of useful information. I'm going to look more closely at the supplements.
Good luck with your therapy, mammogram and Oncologist appointment. Never a dull moment is there?
Gill X
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Taxotere and permanent hair loss
Hello everyone,
I was just having a look at Active Topics and I saw a thread entitled Taxotere and permanent hair loss in the forum Chemotherapy – Before, During, and After.
I was surprised to find that 6% to 10% of patients having docetaxel (Taxotere) suffered permanent hair loss. I was never warned about this but the message on there is to get informed and get an answer from your oncologist. Apparently, as I understand it, it is on the label of the drug but oncologists are still not telling patients before treatment about this possibility.
Apparently there are lawsuits going on about this.
Has this happened to anyone here?
My oncologist told me I was being given Taxotere rather than Taxol because it was less harmful on the heart.
It seems to me that if this can happen with Taxotere it might also happen with Taxol. They are both taxane drugs and sourced from the same kind of tree.
I do remember that my hair started falling out after the first three months of treatment with EC. When I started Taxotere for the last three months my eyelashes and eyebrows vanished. They did grow back.
After treatment I developed peripheral neuropathy in the feet and that has been permanent, but is not painful, just numbness. My oncologist told me that it was caused by the Taxotere.
Have a look at the thread. It is only one page and the title has a misprint and has hair kiss instead of hair loss!
Best wishes.
Sylvia xxxx
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hi everyone just had a couple of days in North Sydney. Went for walk in the am before work! Check out the scener
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My oncologist mentioned permanent hair loss to me after I had finished chemo. As I was leaving his office one day last year. He asked if my hair was my own and I replied no (as i was wearing my wig). He said that in some cases hair loss is permanent. This was definitely not in the extensive drug info provided before I started chemo. It was like it was news to him. My mother had alopecia and I was battling with mastectomy so I was not really phased by the news.
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Kath my sister in law lives in north Sydney :
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beautiful place just try to upload some pics and it won’t let me ha ha! Will try again in the a
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Hello Gill and HelenLouise,
Thank you for your posts to which I shall reply tomorrow.
Hello Kath,
I hope you manage to post your photographs. We all enjoy photographs on this thread.
I have been looking back at the posts through October and September and would like to say thank you to Mary, Gill, adagio, HelenLouise, Kath, Marias and pkville for your efforts through those two months. Susie was very active as well and it is sad that she no longer posts.
Jags56, Setara (Hasssina), and Ucfknights,
I was wondering how you three are doing.
Sanatbarbarian,
Thank you for a couple of posts. If you have any new information, please share it with us.
If I have forgotten anyone, please pop in and tell me.
Thinking of you all and sending best wishes.
Sylvia xxxx
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Hello helenlouise,
I think that all patients should be told about the possibility of permanent hair loss with these chemotherapy drugs. At least it is now out in the open and patients should carefully question their oncologists about it. I tend to think the risk is probably there with all of the drugs.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
I think we are all fed up with Brexit. Boris Johnson is manipulating the public and pretending to be on their side and it would not surprise me that he wins the next General Election, because there is so much ignorance.
I think that all patients diagnosed with breast cancer have to be their own advocates and question everything they are told. All decisions have to come from them.
Reading through some of the many threads I am very concerned about all the women getting diagnosed with breast cancer and all the drastic treatment they are going through. I found some drugs the names of which I had not seen before. One was atezolizumab (brand name Tecentriq). This is of course a monoclonal antibody. I saw a combination of carboplatin/Tecentriq. I did not read enough in detail to remember how these are being used, but there are just so many drugs. Other names that come up are Xeloda, Abraxane, and Halaven, brand name for eribulin. It all gets a bit muddled because they are not written in full to explain the generic name and the brand name. There should be more care with all of this. Xeloda is the brand name for capecitabine and Abraxane, which is the brand name for a form of paclitaxel. The number of drugs in treatment is frightening. In the end the patient dies of the drugs more than the disease. I have seen this happen to two of my friends.
That is about all for now.
Love.
Sylvia xxxx
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Hello everyone,
I am posting a page, from my BMA New Guide to Medicines & Drugs book, on Anticancer Drugs. This is the first page of three and explains everything very well. Unfortunately the print has come out on here smaller than in my book. You may be able to enlarge it on your computer screen. I am going to read the other two pages and then post them. We do need factual information.
Best wishes.
Sylvia xxxx
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These are the next two pages of the above article.
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it was a beautiful morning wallK Lang the promenade in Lavender Bay Nth Sydney!Best view!!!! I'm currently in Adelaide just finishing of the pharmacology unit! Got a distinction ! Whoo hooo! 4 subjects left and I have completed my Masters as a Nurse Practitioner!! Soo good to see my 3 grandsons!
Love
Kath
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Hello Kath,
Enjoyed the photos, especially your gorgeous, happy grandchildren. They made me smile. I'm also smiling because England beat the mighty New Zealand in the Rugby World Cup. 😊
Many congratulations on your distinction, you've worked so hard, well done!
Love,
Gill X
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Kath lovely pics of the harbor bridge. We have walked from north Sydney to the opera house bar many times. Usually get the ferry back
. It’s a great place to visit. So happy you posted and you had a good time.0 -
Hello Sylvia,,
I know what you mean about the confusing array of drugs now being used to treat breast cancer. Whilst, for the most part, I'm glad that I completed my treatment, I do have concerns about the impact on my heart. An ECG only gives a snapshot after all, so isn't really a measure to rely on. I do think patients should be better informed as to possible long term side effects. We can research the more obvious issues, but some side effects are far less common and more difficult to find online. Chemotherapy is a strong poison. Some of us may develop unexpected problems. Sepsis can occur and most of us are aware of this. My specialist chemotherapy nurse did discuss this with me prior to treatment. At the time, I didn't think to ask if this could occur after each infusion or if the Filgrastim would work every time, neither did I understand the danger of universal antibiotics if used frequently within a short time. As you know, I had sepsis on five occasions, universal antibiotics caused the good gut bacteria to die off while the bad bacteria caused C difficile and the Filgrastim took far too long to work. With insufficient white cells, antibiotics can't do their job. I wish people were more aware of the dangers. I should add that what happened to me is rare, the vast majority of patients don't have this kind of reaction - but it can and does happen. Had I fully understood the dangers, I would have ended my treatment before the final cycle - I understand that most of the benefits of chemotherapy are conveyed during the first few cycles, but I need to check on this to be certain. I hope I'm not frightening anyone who has recently dropped in to browse. All I really want to put across, is the idea that knowledge gives patients the courage to take control of their treatment. If you feel out of control or confused at any point, say so.
Boris Johnson and his chief advisor are becoming more outrageous by the hour. We now have a PM who has turned up at PMQs only twice and refused to attend an important Select Committee where he was expected to answer questions. Johnson has, however, made a 20 minute YouTube appearance to answer pre - submitted questions, selected to avoid any risk of telling the truth no doubt . I understand he uses Twitter to spread the word too. The press, or at least the large section that Michael calls 'the daily right to knows' is a Tory propaganda vehicle. I wish Corbyn would let Keir Starmer take over so that we had a fighting chance of recovering from everything that's happened.
Wet and windy here. Poor walking weather all week, so no trips to the beach to take in the fresh air.
Keep warm.
Love,
Gill X
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Hello Kath,
Thank you for posting the photographs. The bridge looks really impressive.
Congratulations on passing your exams and with distinction. I do hope the rest of your studies will go well.
You look very happy with your grandsons.
Take care and keep in touch.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post. I think we all know, or should know by now, that chemotherapy drugs are toxic and that there are a variety of side effects that will not do us any good. As for what has really happened inside out bodies, especially with the heart, as you say an ECG is somewhat artificial. I suppose a patient could put themselves into the hands of a cardiologist and have a battery of scans etc. but what purpose would that really serve except for giving you a lot of anxiety and worry. It is my own personal view for me that I would rather not know because there is not much to be done about it and I certainly would not want to go on packets of pills with more side effects.
I do agree that knowledge is a powerful tool but may also be very frightening to some. Patients must be informed of frequent side effects and it is up to them to decide whether they will have the chemotherapy or not. You cannot win really. If you have the chemotherapy and you have lasting side effects you will have to live with it and if you do not have it and there are consequences from that you will have to live with that too.
The information I pasted on here is a very useful read, but I was disappointed that the pasted result was in such small print, but Raymond assures me that it can be enlarged by zooming.
Have you done this and have you managed to read it? It explains a lot about the different chemotherapy drugs that are used as a regimen and how they attack the tumour in different ways.
I saw on the news on the television on France24 News an interview with a technical consultant who was talking about how they are coming up with new ways of detecting cancer cells in their very early stages. There was one way with a small handheld ultrasound machine connected to a smartphone that a doctor could put all over a patient's body and pick up early signs. What do you think of this? It seems to be that technology is trying to find a path to cure cancer or, as I cynically see it, putting you on drugs earlier and thus longer.
I am so weary of Boris Johnson and his dictatorial antics. On Monday there is going to be a vote on whether to have a General Election, but I bet it drags on and there is no conclusion. He is hiding something in that latest deal.
Do you think there will be another referendum and the question will be going with the latest deal or staying in?
Boris said that he would deliver Brexit on October 31st or die I a ditch! I bet he does not deliver on either of these!
What amazes me is that people are being taken in by Boris Johnson and the Tories are leading in the polls. I like Jeremy Corbyn and I think he is a decent man, but I do not think he can win an election. I quite like Keir Starmer but I am not sure he appeals either. What a mess everything is.
The weather here has been dull and wet with nasty winds but today it is calm and sunny, but the rain is coming back by Tuesday. I find that at the moment Raymond and I do not feel like walks.
That is all for now.
Love.
Sylvia xxxx
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Hello Sylvia,
Apparently last night's 'Dispatches' programme discussed the secret talks taking place between major American pharmaceutical companies and the NHS. We should be very concerned about this, as if successful these drug companies will provide NHS and over the counter pharmacy meds at an extremely inflated price. Many drugs will simply become unaffordable. So what might this mean for cancer treatments I wonder? How long will it take for the public to wake up to the real intentions of Boris Johnson and the Tories? You're right that neither Corbyn or Starmer will appeal to the public and Harriet Harman seems happier going for Speaker, although she did agree to be temporary PM if necessary. Our NHS will be sold off if Johnson and the Tories remain in power for much longer.
Thank you for the useful information regarding anti-Cancer drugs. Everyone on the thread should take the time to read it. Raymond is right, the small print is easily enlarged. Like you, I also look at other threads for information.
A few days ago I re-read the letter sent by the consultant at the London Cancer Centre to my breast surgeon. He suggested that my chemotherapy should either be Paxlitaxel or an anthracycline - taxane based therapy. Of course, I had ticked taxol (Paxlitaxel) on my profile instead of taxane (Docetaxel). I had Docetaxel, which seems to have morphed into Paxlitaxel in my chemo brain. Paxlitaxel was to be given weekly over 12 weeks and wasn't offered to me in Norwich, which was probably due to time/staff constraints. The cold caps were all booked out and there would have been at least a 5 week wait for one. In London I was told that my hair would grow back, though I knew that there was a small 1% - 2% chance that it wouldn't. I had no idea at the time that it stood at 6% - 10%. It wouldn't have made any difference to me as my hair didn't seem as important as the opportunity to reduce the chance of cancer returning. It appears from reading the hair loss thread here that women aren't being warned, despite hair loss information being provided by the drug company since 2015. Oncologists need to tell patients about the risk of permanent alopecia and hair thinning along with other side effects - informed choice.
Weather here is sunny and dry but too cold and windy to be anywhere other than indoors by the fire.
Love,
Gill X
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hello to all,
I have caught up on reading, I think. Kath, you look so happy with your family, and the pics of Sydney are great, I hope to get there one day.
Helen louise, has your hair come back by now? For me, my head hair has returned, but eyelashes and eyebrows are quite sparse. I have zero underarm hair. I wasn't told this either, just that hair would fall out and then return.
Sylvia, I am also able to read the posts about anti-cancer drugs. Quite an array. It's hopeful that these drugs actually cure some types of cancer, the box below that info about "curable cancers" has Breast Cancer as one of the cancers in which these drugs may produce "WorthwhileBenefits", I notice. Even though good results are not guaranteed, and I am left with lingering aftereffects, I would probably do it again if I was back there 5 years ago. There is nothing else really. I think good diet, clean water, activity, avoidance of strong chrmicals will aid in prevention but probably not in stopping tumor growth. From what I have read, I think that more natural, non-toxic foods and supplements would have to be taken in massive doses to actually stop tumor growth, and this has not been studied enough.
Today is my annual visit with oncology doc. I had mammogram last week, it was normal but radiology doc cautioned that my remaining breast tissue is very dense, and an MRI is recommended. I think this is something new, I think too many tumors were being missed by mammograms, and by recommending MRI, the way through insurance requests is eased. The malignant tumor I had 5 years ago was missed by mammogram, and a hands-on doc exam, so I am glad to see this MRI recommendation.
Tomorrow I see Orthopedic doc, and I think I will be set free of big sling. I will still have a ways to go with therapy (ouch) and not overusing arm. These last 6 weeks have been so difficult, this is a good milestone to reach tomorrow.
Gill, you went through so much with your bouts of sepsis and Cdiff. I thought of you often when I, over the last few months, watched a good friend go through her first chemo treatment for lung cancer and get a staph infection which had her in hospital for 3 weeks. Abut a month and a half later now, she is resuming some normalcy but is still weak. She has refused further chemo treatments even though further treatment is highly recommended for her. The nurses are still coming and packing her open wounds, from a malfunctioning port that I suppose was the cause of infection.
It is also gray and damp and quite chilly here, normal Halloween weather. Sunday our time changes back an hour, and it will be dark by 5 PM, and nobody likes this. Except perhaps vampires, who will be out for Halloween!
Off for now, love, Mary
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hi Mary
Good to hear from you. My hair has been back for some time now. Like you my eyebrows and lashes are thin. No hair under my arms but the dreaded leg hair persists, first thing to come back in fact.
Good luck with the MRI.
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Hi Mary,
Your friend doesn't seem to be recovering well from her infection. I can understand why she doesn't want any more chemotherapy, I had C diff after my final cycle. I wouldn't have accepted another cycle. It's a bit different for your friend as the infection is likely to have come from her port and that has been resolved. Maybe she'll change her mind when she's feeling less fragile, though she probably doesn't have much time to reconsider.
Hope your MRI gets done quickly with good results. I'd prefer MRI to mammogram. My Mammogram, 9 months before diagnosis also missed the cancer. My radiographer said that there looked as though I might have a cyst. I was never recalled and I wrongly assumed all was well. I don't trust mammograms but nothing else was on offer when I went for my annual check with the breast surgeon.
Looking on the bright side, the weather is perfect for Halloween here too. I'm not looking forward to any small people knocking at the door and hope the dark farm track leading to the house will be too scary to risk. My Grandson has told his mum that he wants to dress up as a ghost. She's delighted to be getting away with just an old sheet with holes for eyes. She's still working on the pumpkin.
Sending happy healing thoughts to your shoulder.
Love,
Gill X
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Hi Helen,
My hair looks thinner now than it did a month ago, but very little has fallen out. I would have had an impressive moustache by now if hadn't got the tweezers out on a daily basis. I'm not happy that my nose hair is making such an effort either.
Hope that you're enjoying work and finding time to sit in the garden.
Gill x
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helenlouise,
Ditto on leg hair, in the summer I use razor daily. Now that it's getting colder, I will be a slacker. Out of sight, out of mind!
Mary
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