Calling all triple negative breast cancer patients in the UK
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Hello all
Happy Easter .
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Hello Sylvia,
Sorry to hear that you're still suffering the after effects of that dreadful bug. Being ill over such a long period of time was bound to impact on your overall health. I do hope that your eye soon clears up and that the warmer weather helps.
I'm going to do some research on the benefits of colloidal silver and the use of silver in medieval medicine generally. It will be interesting to see your perspective when you've given colloidal silver a fair trial.
You mentioned delaying breast reconstruction until I've healed fully. I've decided that reconstruction isn't right for me, a long surgery for something that doesn't really bother me. I just thought that my surgeon would probably want to discuss this when we next meet. However, I telephoned my oncology specialist nurse and she told me that the appointment would be in a year's time. No ultrasound scans or mammogram on the right side have been offered and my surgery was seven months ago. I have no intention of accepting this, so it seems that I'll have another battle on my hands. I will have no further appointments with the oncology team at all. A friend who lives near St Albans and has triple negative breast cancer said that she felt completely abandoned after her treatment was over. Aftercare appears to be better in London and in hospitals not sinking in debt. A real postcode lottery.
You asked me about the repurposed drug being used in metaplastic breast cancer trials. It's L-NMMA. According to Dr Jenny Chang, director of the Houston Methodist Cancer Center, 1 in 5 metaplastic cancers have a high expression of RPL39 and iNOS. In mouse trials she combined L-NMMA with Pembrolizumab to stimulate the immune system to detect and attack cancer cells. Human trials began in 2017. This combination has already been successful in some patients with non-small cell lung cancer and malignant melanoma.
A one in five chance doesn't seem much, it isn't quite the golden bullet we're all waiting for, but it does offer hope for the future. Research is moving very quickly at last. I do know of a patient living with late stage malignant melanoma and the treatment has halted his cancer. His melanoma is now a chronic condition controlled by his medication. It would be interesting to see what the future holds for him.
Wishing you and Raymond a peaceful Easter, with plenty of sunshine.
Love,
Gill X
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Hello, Gill,
I'm shocked at your being abandoned by your oncologist after treatment is over. I'm seeing mine every 3 or 4 months because she's presiding over the Add Aspirin trial for West London, but I'd still be seeing her once a year even without that.
Plus, I've been told repeatedly that I can contact my breast nurse any time if I want to see either oncologist or surgeon for any concerns. That's how it should be. My breast is still changing, even six months after radiotherapy. My oncologist told me that I would eventually understand what was 'the new normal', but it isn't easy. I would think there were lumps and bumps if my surgeon hadn't given me a full manual examination less than three weeks ago and declared himself very happy with it.
Ah, well, nobody said it was going to be easy. Almost every time I go to Charing Cross or Ealing Hospital, I see someone with no legs, which I would find much harder.
Happy Easter. I've been trying to find a nut-free Egg for my great-niece who has allergies but I find I've left it too late. She will have to settle for a hug on Sunday. She starts school in September, just days after her 4th birthday, which seems so young, but has at least got into her first choice. Well, not her first choice obviously.
Hope you are having the same fantastic weather we're seeing in London.
Susie xxx
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Hey Jags,
Same to you!
Thought of you this when my daughter and I photographed the local 2109 Holi festival on Sunday. Here are a few of the many photos we took. Hope you enjoyed your Holi festival as much our area participants did. I asked that powder not be thrown on us to protect our camera equipment.
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Today is the 1st anniversary of my 1st chemo session. That year's gone quickly.
Susie
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The bluebells.and wild phlox that grow on the riverbank on the farm road
Happy Easter!
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Dear all,
Wishing everyone a happy Easter. Special thoughts for those undergoing treatment or about to undergo treatment.
As ever, I'm playing catch up but will reply very soon.
Love,
Gill X
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Hi Mary,
The riverbank and farm road must be idyllic at this time of year.
Here the bluebells have flowered in the garden and in the woods just in time for Easter. The squirrels are out in force digging up the lawn along with the rabbits, moles and cats. I have no idea why I still call it a lawn. Meanwhile, the deer have made a start on the herbaceous borders and flowerbeds. Give up! It's Spring and I'm going to sit back and watch.
Happy Easter to you and your family.
Love,
Gill X
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Hi Helenlouise,
I'm so sorry you have all this hanging over you, though your oncologist seems to be moving quickly. Fingers crossed for a negative biopsy result.
From your posts here you seem to have a very strong and positive spirit and I'm quite certain that will be a significant benefit.
Enjoy the Easter holiday.
Gill X
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Hi Susie,
Amelie Chocolat and Hotel Chocolat state whether their Easter eggs have nuts. Expensive though! Perhaps your great niece could have a belated (and much cheaper) egg as compensation for such an early start at school.
If I find any lumps or bumps I'll have to go to my GP who'll refer me. This would probably be much quicker in the end. Feel shortchanged though, particularly since metaplastic comes back quickly and often. Might be simpler just to pay for an ultrasound in a couple of months.
Feel a bit pleased with myself for ducking neuropathy. It might never have happened to me in any case, but that hasn't stopped me from telling anyone who will listen about sticking my feet into a washing up bowl full of frozen peas.
Congratulations on your first chemotherapy anniversary. I've just eaten some chocolate as I'm celebrating on your behalf.
Enjoy the sunshine.
Gill X
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Hello, Gill,
What a coincidence as I have also eaten some chocolate.
I can't believe that you have to go via your GP if you have any concerns. This is just wrong.
They say that neuropathy is permanent but I do feel that mine is improving as the months go by.
Susie x
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Hello Gill,
Thank you for your latest post to me on the 19th.
I do wonder what is going on at your hospital with reference to post-treatment. I do not know really what is happening at the RD&E hospital in Exeter, where I had my treatment and whether they still have the three-monthly check ups for a couple of years, and then on to six monthly for another couple and then yearly. It might be that cost cutting is going on there as well. I do know one person here that had a three-monthly check up after being diagnosed just before Christmas, but I think she had only surgery.
I cannot understand why you have not had the scans, and ECG that I had when I finished all my treatment.
I was glad to read that you are going to be assertive and demand to know why nothing is happening for you. I had an appointment with my breast cancer consultant and oncologist together after surgery, chemotherapy and radiotherapy to tell me that my pathology report was good that I was NED (no evidence of disease).
Do you have anything like FORCE. It is something that was set up as a charity in the hospital grounds of the RD&E and you could go there all through treatment and for as long as you wanted afterwards. They did counselling, and all kinds of complementary therapies for patients and carers. It was in a lovely modern house with a nice garden and you could get drinks etc. and take your lunch there. It is still going strong.
It is not right that treatment and procedures are not uniform across the country.
I have looked up information about L-NMMA. I could not find this drug anywhere in my medical books, not even under the name of tilarginine. I found what it says the drug does very interesting and how it binds to and inhibits iNOS. Are patients now being told that they have this in their tumours and that it is associated with poor survival in TNBC? I read something from BioMed Central that you might want to look up if you have not already done so. It was quite technical to read but it did say, under Conclusions, "Considering the effectiveness of L-NMMA in decreasing tumour growth and enhancing survival rate in TNBC, we propose a targeted therapeutic clinical trial by re-purposing the pan-NOS inhibitor L-NMMA, which has been extensively investigated for cardiogenic shock as an anti-cancer therapeutic".
Have to go now. Talk later.
Love.
Sylvia xxxx
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Hello Sylvia,
I asked about having an ECG after treatment but was told that these are not done now as any damage to the heart from chemo- or radiotherapy is over the long term, making the arteries more likely to fur up. Ditto scans, presumably.
Susie
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Hello Gill,
I had to stop my post yesterday because of an unexpected visit from a friend.
With reference to the targeted treatment we were discussing, it does not sound like an easy journey with a combination of this drug and chemotherapy.
I am trying to find the time to get through a book that I am finding most interesting. It is entitled How Britain Really Works – Understanding the Ideas and Institutions of a Nation, by Stig Abel. It really shows up what a mess the country is in and how it is always a muddle-through society. On the cover the Sunday Times says "An intelligent and clear-eyed account of much that goes on in our country".
So far I have read with great interest the Introduction and chapter 1, Economics, chapter 2, Politics, chapter 3, Health and I am about to start on chapter 4, Education. There are 8 chapters in all, plus and Epilogue. The chapter on Health is excellent and starts with "The pre-history of the NHS" and there are various other headings to each part of the chapter: The history of the NHS, A short history of NHS scandal, The scale of the NHS, How does the devolved health service work?, The cost of the NHS, other models of health care, Health care models in other countries, Health care performance in other countries, Health of the nation, Taxing and behavioural change, Inequality of health, Mental health problems, Weight of numbers, The problem of social care, The politics of the NHS, and Today's NHS. This chapter goes from page 99 to page 135. It is all easy to read and I think it is essential reading.
I do hope you had a good Easter Sunday and enjoy Easter Monday.
I am still taking the colloidal silver water that I bought, but I do not know how I shall be able to ascertain whether it has worked or not. It is a bit like my breast cancer treatment. I was given a poor prognosis at the time in 2005, because I was not hormonal, and yet I ended up with a good pathology report and NED and here I am heading towards fourteen years since diagnosis. Since I delayed my treatment for many months and took advice from a well-known herbalist, who was connected to Cancer Active and icon magazine, and took artemisinin (wormwood) and astragalus for the months until I started orthodox treatment, I shall never know how much they helped. The same goes for the homoeopathic treatment that I took from diagnosis and for five years. It was my breast cancer consultant surgeon who referred me to the Royal Bristol Homoeopathic Hospital. I took oral Iscador all through my orthodox treatment and for five years. I addition I had once consultation with a private nutritionist and much what she recommended I was already doing, but I did add green tea and bitter apricot kernels, which I have been taking ever since 2005. I shall never be able to know how much this all helped. I must point out that the nutritionist and homoeopathic consultant did tell me they thought I should go ahead with the orthodox treatment and use all the rest as an adjunct. The herbalist at the time would not treat patients once they had started orthodox treatment. His clinic still functions but I do not know what the policy is now.
Please keep in touch and let us know how you progress.
Love.
Sylvia xxxx
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Hello Viewfinder
The pictures are lovely and colourful just like Holi. Yes I did enjoy playing Holi and having fun with friends. Hope you had a nice Easter.
I am saddened by the attack in churches in Sri Lanka and the innocent people killed.
Love
Jags
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Hi Adagio
It does sound as if your husband and my brother suffered the same injury to the spinal cord, not a break but a jolt, a big shock, a bruise. Yes, it takes months to overcome, and I'm glad therapy is helping your husband. My brother is, for all intents and purposes, almost fully recovered. I say almost because although he is back to doing all the activities he did before, there is a very subtle difference. I think he, and your husband, both had a very narrow escape from having a much worse outcome, I am very happy for both of them. It has been 8 months for my brother since his injury.
My days are filled with both pain and small triumphs. This morning I am typing with two hands! Yesterday I put shampoo on my head in the shower with my right hand! These are exciting events to me, although my right arm is already tiring of typing, I will probably go back to left hand soon ha. I am 6 weeks past surgery now, so the therapy exercises are now more painful, but at least are producing some results. I have a long way to go, therapy-wise, but people do it all the time, I suppose. Funny, my surgery was the day after Ash Wednesday, and the 6-week mark was Holy Thursday, and then I could remove my big arm sling. Some kind of meaning there, I think hmmm. We only had Easter Mass at our small church where I sing, and Had to go to neighboring church for Holy Week Masses.
I believe your mammogram will be fine, it sounds like you are living life well and one good thing is that the mammograms seem to go faster every year, they keep making small improvements.
Good to hear from you, and happy Spring!
Love, Mary
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Jags,
I too am saddened by the attack in churches in Sri Lanka and so many innocent people killed.
The state of the world saddens me. There is so much hate in the world and I wish it would stop! This verse comes to mind "Do not be overcome by evil, but overcome evil with good."
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hi everyone
Hope u all had a great easter. Been snowed under with two units for uni which are very heavy. Advanced research and clinical assessment. Taking each day at a time and still have lots of aches and pains but slow and steady. Have been try to keep an eye on my thyroid which is slowly getting better. Mind stiI’ll Goes to that dark place with everything different I see but try to manage that . Drs app in May and I’m Getting stressed about it already
Just a few pics from
Our bush barby st Easter
Much love
Kath
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Hello Kath,
It was good to hear from you and thank you very much for the lovely photographs.
I can understand how busy you are with your university work and I am sure you will be successful with that. I am very interested in what you are doing and it is all so important.
You are right to be taking one day at a time. It is quite normal to be anxious about any aches and pains. We all know that if we are really concerned and anything lasts too long, we need to get it checked out for peace of mind.
Is your thyroid under or over active? The thyroid is so important in the working of our body so we have to keep a close look at it.
I do hope all will go well when you have your doctor's appointment in May. Try not to get stressed and focus on the fact that doctors are there to try to help us.
Do you know anything about the new mammogram machine, build in France, designed by an all women team, and the machine is called Pristina. I have just been reading about it in a French magazine. It is worked by patients themselves using a remote control and can apparently detect micro-calcifications smaller than a grain of salt. It does much more as well.
Keep in touch.
Love.
Sylvia xxxx
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Hello everyone,
I do hope you are all having a good week.
As you can see from my posts to Kath, I have been reading about a relatively new mammogram machine that was built in France by GE and was designed etc. by three women to make mammograms less frightening for women, because women in France were not going for their mammograms for various reasons. Please see what I said to Kath about the machine. It is called Pristina. I was reading about it in the French magazine, Paris Match, where there is a photograph of it.
Having read the article I than looked online and found an article dated November 26th 2017 by Tomas Kellner, entitled Engineered by Women for Women: Colleagues Band Together to take Fear out of Breast Screening. This machine is called Pristina and if you Google Pristina you can find details.
On another matter, I have been asked whether it is normal to have pains in the breast while going through chemotherapy before surgery. Please post if you have experienced this.
Are any of you doing or have done any complementary or alternative treatments during your cancer journey?
As you know, I did various things and I am great drinker of all kinds of green tea. I drink mainly Clipper tea, bags but especially leaf tea. Sencha green tea is also excellent. I also drink the green tea known as gunpowder tea.
Are any of you taking medicinal cannabis? I have not tried it, but I see this product everywhere in natural food stores and Holland and Barratt. I do not know much about it as an anti-cancer agent.
To any newly diagnosed patients, please do not be afraid and please do not nervous about joining the two main threads for breast cancer with triple negative receptors. You will learn a lot from all the women that have gone through this cancer journey.
I hope all of you have a relaxing weekend.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Thank you for your last two posts - interesting as always.
I feel quite certain that the lack of post-treatment checks here is down to cost cutting. I had hoped that following scans etc, I would be told that there was no evidence of disease. After aggressive chemotherapy I would have thought that I'd have been offered an ECG, especially as I'm 64 years old. I feel sure that my GP will help with this, just as she did when I needed chemotherapy She has a very strong patient focus. I have to wait for an appointment as she's by far the most popular GP at our very oversubscribed surgery.
The chemotherapy unit in Norwich is next to the Big C Centre. I've visited several times, but I'm not aware of anyone offering advice regarding treatment or aftercare for cancer patients. Exeter seems to be way ahead of many hospitals in the UK.
Ultimately, I do think all triple negative cancer patients will be tested for iNOS. Whether they are given all the facts is another matter. Asking for your pathology report following the biopsy and again after surgery is essential. Personal research is vital - transparency can be an illusive concept for some NHS doctors. I'm assuming that most patients want to know the facts, inevitably there will be some who would prefer not to know.
It's frustrating, but inevitable that those using herbal and homoeopathic remedies in addition to orthodox cancer treatment and for years afterwards, cannot know what works best. More (unbiased) research over time into herbal treatments is needed. There is also a need for doctors to be honest regarding the limits and possible dangers of orthodox medicine and interventions.
I've ordered a copy of of 'How Britain Really Works' from Norwich Library. Stig Abell was formally Managing Editor of the Sun, which made me think twice at first. The fact is, Britain isn't really working at all any more - unless you're disgustingly wealthy. I'd say that the rich have never had it so good. I'm not at all surprised that Abell devotes so many pages to the NHS. Our Health Service is now at the end stage of it's life. It's absolutely worth fighting for and I still believe it could be made to work, but not under this Government. The outsourcing of NHS services has been disastrous both in terms of cost, efficiency and patient care. Hospitals built by PFI are drowning in debt, as predicted. It's all about the money and never about the people.
To finish on a happier note, I hope the sunny Spring weather has reached Exmouth.
Take good care of yourself and of course, Raymond.
Love,
Gill X
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I'm a fan of Stig Abell (can't imagine what he was doing at the Sun) but didn't get very far with his book. My problem with non-fiction is that the authors seem to start with a summary of their thesis, then deliver their thesis, then sum it all up again, by which time I am snoring.
Susie
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I'm the opposite. I can't wait to see what happens next in a novel, so after the first or second chapter I read the end. Ruins it every time. Non-fiction is much less frustrating.
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Dear Flora,
I'm sorry that your mother still has some nausea and taste issues after her final treatment. I still had slight nausea until a couple of weeks ago. My taste is not quite as it was, but it's good enough.
Your mother has certainly not had an easy time and I can well understand why you were worried about where her bouts of sepsis might lead. The only symptoms that I was aware of was a high temperature and shivering with cold. I don't think that I took sepsis very seriously as I was so focused on beating the cancer. C.diff was a real horror, but took my mind off cancer, every cloud......
I do hope that your mother's atrial fibrillation can be dealt with. I seem to remember Tony Blair having his A F treated successfully. That was several years ago. It would certainly be worth investigating when your mother feels well enough.
I've been told by friends that recovering from chemotherapy can take quite a long time and it's still early days for your mum. I think I'm only just beginning to understand what adjusting to the 'new normal' really involves. My last chemotherapy was on February 28th.
Glad to hear that you've finally shaken of the flu.
Take good care of yourself and your family. Best wishes to your mother.
Gill X
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Hi Gill,
I'd say at least two months before your taste buds are completely back to normal, maybe three, but it will happen.
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HI, Sylvia
I have been busy, and have also been trying to get some reading done, I have been looking over Chris W's post on Cannabis, titled "Cannabis: Hope or Hype." I'm afraid it leaves me more puzzled than before. To hearken back a bit; when I was young I did smoke (illegal) pot for a while occasionally, stopping when it began to make me feel uncomfortable and paranoid. I knew nothing about it except that almost everyone I knew also smoked it occasionally and some people did much more than than that. Now there are States here where growing it and using it are legal, although Federally it is still illegal. In my State it is still illegal, although a Medical M. Bill has passed, and the non-THC CBD oil is being sold everywhere. I have no idea how to tell if one is buying the real thing or a little bottle of canola oil! I feel uncertain about the whole thing, is the use of Cannabis with THC legal in the UK?
Next I skipped to Chris's #10 post, which has in it a link to "Comprehensive review on Immunotherapy". I have linked to it, it's rather interesting since we hear so much about this these days.
https://www.canceractive.com/article/comprehensive-review-cancer-active-immunotherapy
There are more of his posts, interesting. Covering Prostate cancer, Fish oils vs Plant oils and more.
I am still plugging along going to therapy, and doing prescribed exercises at home 2x daily. Improvement is very gradual, arm is somewhat more flexible but weak, still not allowed to work on strengthening. No weight-bearing of any kind. We have been having very frequent rainy-weather systems move through, with nice clear days here and there. I have become very sensitive to this, when the barometer starts to drop my body starts to ache all over, today is such a day.
I am behind on posts, I am very glad that Gill is so much better, and hate to see that Helen has more worries. I will try to catch up and post a bit more too. Still one-handed for the most part, but sometimes 2.
Talk to you again soon
Love, Mary
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Hello Gill,
Thank you for your post of yesterday. I have had a very busy week but I shall try to catch up with everything tomorrow, Saturday, when I hope I shall have some more time to myself.
I do hope you will enjoy the book I mentioned. I have taken quite a liking to Stig Abell and I cannot imagine how he was ever Managing Editor of the Sun, which is a dreadful paper. I got to be aware of him when I watched an interview on RT and I was very impressed with him. On another occasion I saw him on one of those television programmes where journalists and others review the press. I think all politicians should read this book, but it might be above them!
Love.
Sylvia xxxx
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Hello Susie,
I was glad to read that you are a fan of Stig Abell.
Have a good weekend.
Love.
Sylvia xxxx
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