Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your latest post. I shall write in more detail tomorrow.
There are little bottles of CBD oil being sold here in Holland and Barratt stores and natural food stores. These are just sold over the counter and are very expensive. Apparently you just need a few drops. I have not tried them because I do not really know what they do, other than remove money from your wallet! The real cannabis is an illegal drug here, though I think some politicians want it legalised for medicinal use and I think, perhaps, for recreational use.
I shall certainly look up your link on immunotherapy again, but I am not that convinced about immunotherapy drugs.
I shall write more tomorrow as I hope to be able to remain free tomorrow morning.
Take care. Have a good weekend, avoid too many chores and try to relax with a good book.
Thinking of you.
Love.
Sylvia xxxx
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https://www.canceractive.com/article/the-difference-between-cannabis-and-hemp
I just didnt read enough, this clears up some confusion.
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Hello Gill,
Thank you for your latest post. I do agree with you that post-treatment checks are probably down to cost cutting and I think that patients will now need to push for any checks that they think they need. I think it is very important to get certain checks before and after finishing treatment so that you have an idea of how the surgery, chemotherapy and radiotherapy have affected your body. The checks that I had both before and straight after treatment were very important. I had a CT scan and a bone nuclide scan and these would show that the cancer had not spread. I also had an ECG which showed that pre-chemotherapy everything was fine with my heart. What I did not have and what I would now ask for would be a bone density scan (DEXA) to show the state of my bones and whether I had osteopenia or osteoporosis before my treatment, because we know chemotherapy and probably radiotherapy cause these. I had the CT scan and bone nuclide scan after treatment and all was clear, as was the ECG scan. As I have described before, I then went on to regular physical check ups for ten years. All of that is probably not happening now in the UK.
Side effects of treatment, such as lymphoedema and neuropathy, show up pretty quickly and there is no cure for these but there are lymphoedema clinics for treatment. As for neuropathy, I know of no treatment.
We do not know what other side effects will stem from our treatment over the years.
I do wish you luck with getting help through your GP.
As far as I know, pathology reports were not given to patients when I was going through treatment. I had an appointment with the oncologist and the breast cancer consultant surgeon and was told my pathology report was good and that I was NED. I was happy with that and even now I feel that I would not like to see it because it probably has a lot of medicalese!
I do remember a conversation with my breast cancer consultant after my first appointment with her. She was very surprised that I wrote to her after that with a load of questions ready for her to answer at my second appointment. When I went to that appointment she answered all of my questions and said she was very impressed with my letter, because most patients did not want to know anything and that they just wanted the treatment. That will not be the case now, I think, but you never know. There are a couple of women here that went through treatment recently and they seem to know nothing and not wanting to know anything. They both had hormonal receptors, but whether they know what that means I have doubts. They just know they are taking medication after surgery, but I do not think they know why. They did not have any other treatment.
I do agree that doctors need to be honest about the limits and possible dangers of orthodox medicine and interventions. I think patients today need to read the latest books about breast cancer treatment, side effects etc. For something like lymphoedema, which can be caused by all three parts of treatment, they should read Let's Talk Lymphoedema that I have mentioned quite often.
I am sure you will enjoy How Britain Really Works. I think it shows that everything is in a total mess and it will need some strong politicians and leadership to toss everything out and start again. Unfortunately I cannot see anyone of this calibre in any party.
I have to stop now as I have quite a few things to do and I want to get a bit of leisure time as I have a busy week next week.
Love from stormy Devon.
Sylvia xxxx
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Hello Mary,
I was glad to read that with the therapy your arm is slowly improving. It must be very frustrating and tiring.
Here in Exmouth the weather has been very changeable, going from summer temperatures to winter ones. Today it is raining and an awful storm is blowing. It is not a day for going out!
Somewhere in the posts I did comment on the last email from Chris Woollams. I do find there is too much information and it is hard to take it all in. I do admire him and I shall never forget how I picked up icon magazine at my first hospital appointment after diagnosis, read it and learnt so much. I have been reading it ever since but I do not think there are as many issues now, as most of it is on line. Reading that really guided me through my own treatment. I contacted the well known herbalist there and I started taking artemisinin (wormwood) and astragalus and corresponded with him. I also bought the book The Cancer Directory by Dr Rosie Daniels and read it cover to cover. I got to know about it through icon.
I need to stop now as I have things to do. I shall probably add bits as I think of them.
Thinking of you.
Love.
Sylvia xxxx
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Hi Slyvia, Gill, Mary and all,
Thank you for your interest. My husband and I met with MO last week to be told they still await the HER2 result. The first test was 30% positive for HER2 and he said he thought there was a good chance that I am still TNBC but won't know definitively until second test is back. So a tad frustrating that we are still waiting. Should know tomorrow. Either way it is more treatment with a view to managing. He has already scheduled the next set of CT scans for end June.
The surgical biopsy has left me with a wound that is slowly settling. Has been draining serum that has required new dressings each day. Nurse anticipates the stitches will have to stay in another week or two. I already have a few more nodule under the skin to the armpit side of my scar. MO said he wasn't surprised.
In the interim and regardless of the receptor outcome, we have decided a holiday is due. So we are looking at Japan early June. It ticks all the boxes: culturally different, not too far, safe and clean. It has been a desire for some time. I did business Japanese language studies as a part of a degree in the 90s, so have had a penchant for some time. So that is something to look forward to.
I am trying hard not yo spend too much time thinking about clinical trial in case I don't need to go there. The waiting as always is quite excruciating. Anyhow I started back to work today so that is something else to keep me busy.
Hoping everyone is doing ok and enjoying life.
Best wishes xx
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Hi helenlouise,
Waiting for test results is, as you say, excruciating. Most of us want to know exactly what we're up against and then just get on with the treatment. I'm so sorry that more nodules have appeared.
A holiday is definitely called for and Japan sounds just right. Very impressed that you did Japanese language business studies, not the easiest of languages, to say the least. You could certainly do with a break from hospital appointments for a while. We all need something to look forward to especially when life throws a few 'surprises' our way.
I guess that many of us on this very supportive thread will be thinking of you.
With best wishes,
Gill X
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Hello Sylvia,
Pathology reports were not automatically offered to me, I had to ask. I was told that they were not usually requested . I strongly believe that patients need to obtain pathology reports, they are certainly not easy to understand at first, In fact I needed to spend time researching most of my report - that's not for everyone. Appointment times here are very short, waiting rooms are overflowing and there is almost certainly an assumption that patients will not understand the medical technicalities of breast cancer or its treatment. I was not told how rare and aggressive metaplastic breast cancer was, neither was I properly advised about surgery and certainly not about chemotherapy. I also required my pathology report for my second opinion at the London Cancer Centre. Not everyone will want to see their report, but it can be useful to have it, even if you just put it into an envelope and keep it somewhere safe, without reading it.
Michael has just collected 'How Britain Really Works' from Norwich library. I shall start reading it this evening. As you point out, we have absolutely no one with leadership skills in Government. Moreover, the opposition is very weak and I'm no longer sure about what Labour stands for or who it represents.
Please don't reply to this, you deserve some leisure time and the opportunity to get on with other things that you you need to do this week.
Weather is cool and overcast in South Norfolk, no longer raining though.
Love,
Gill X
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Got the news today, my cancer is still TNBC. I was almost ready for more chemo and herceptin. But not to be. So now we wait for a tumour with adequate dimensions (on CT). Next scan booked for late June. I feel like my body is a time bomb! Hopefully something will show on a scan before I get symptoms.
I know that whilst I feel well I must make the most, enjoy and hope the next stage isn't a tumour in the brain. I feel disappointed and sad. For me but more so for my family. I think I am ok with my fate I just really want to avoid years of being terribly unwell and all that comes with that for everyone around me.
The trial that has been proposed is called Morpheus. I have done some preliminary reading but until we have a positive CT scan I won't be considered. It seems unfair but do I understand that they must have something measurable otherwise my case serves no purpose. So what the particulars are I won't know until then. I do know is that it is immunotherapy and an array of other drugs depending upon which arm of the trial you are allocated.
Whilst I am not surprised by the TNBC diagnosis I feel like I am living a dream.
As soon as the stitches are removed and have healed from the biopsy we will book our trip. Until then my focus must be the work in front of me (till end May) and our trip to Japan.
I hope everyone is staying well or battling best you can. Lots of love, best wishes xx
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Hello Helenlouise,
I have been reading your two posts. The first one was April 30th.
I must admit that I do find it a bit confusing that the first test showed 30% HER2+ and now it is not.
I was sorry to read that the biopsy has been causing problems that required draining serum. I was sorry to read, also, that nodules had been found under the skin to the armpit side of your scar. Are these nodules cancerous and if so I was wondering why they could not give you some radiotherapy to get rid of them?
This must be so distressing for you but be as positive as you can that all of this will have a good outcome.
I think you are quite right to organise a holiday and I am sure Japan will be a big adventure. I was very impressed to read that you did business Japanese language studies as part of your degree. Did you do a business degree?
We can all sympathise with all this waiting. It is such an awful part of the cancer journey that wears patients out and non-patients will never be able to understand.
Going back to work is a good idea as keeping busy can be therapeutic.
I am now reading your second post.
I see that you now know that your cancer is TNBC and that you will not need Herceptin, which is apparently very nasty and affects the heart. Why does being TNBC rule out chemotherapy?
It must be awful to be waiting for a tumour with adequate dimensions to show up on a CT scan. That seems to go against all we are told about getting an early diagnosis and treatment. Late June seems a long time to wait.
I was glad to read that you are feeling well and we all know that with this disease we have to take one day at a time. Do not allow yourself to have dark thoughts. Patients can live a long time with metastatic breast cancer. I have a friend who has been living for quite a few years with metastatic breast cancer to the bones. She has oral chemotherapy and sometimes infusion.
Concentrate on thinking about that holiday in Japan and live one day at a time and to the full.
Thinking of you and sending love.
Sylvia xxxx
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thank you, as always, Slyvia for your prompt reply.
To answer your queries, with HER2 they like to do two tests to confirm status. The second we were waiting for was ISH which is one of a few tests they can do to confirm the result. 30% on the IHC in borderline so the ISH was necessary as treatment with chemo and herceptin is not helpful unless the cancer is HER2 positive.
Yes the nodules are cancerous and diagnosed as TNBC. So chemo / herceptin is not thought to be productive. Especially as I have already had FEC-D regime Neo adjuvant and a 6 month course of xeloda post op.
I have already had two rounds of radiation to my chest (2013 & 2018) so the skin is now quite fragile, hence the wound exuding serum and not healing readily. Surgeon concurred today no more surgery to that area.
Yes I did a business degree, completing in 1992 with a major in marketing that included 2 units of business Japanese as an elective. I studied that whilst having our son. Language was an easy option whilst caring for a newborn. It will be so nice to finally visit the country.
The three month wait for CT is standard but if I have symptoms they will move it forward. So we wait but continue to live and enjoy until my situation changes. Essentially trial is my only option to do something.
I did ask my MO what happens if I do nothing and he said within 12 to 18 months I will become very unwell. As the cancer has recurred so quickly they assume it will continue to spread. I know this only his best estimate of my situation and anything is possible but I think whilst I am well I need to take the advice I am being given and go with any treatment they can offer.
It is good to share with others who understand how complex and trying this disease can be.
Thank you all for your continued support xxx0 -
Hello Gill,
Thank you for your latest post. I suppose how much you want to know about your breast cancer and what is in the pathology report is all very personal. Most people that I know around me that have been through cancer seem to know little or nothing, except what treatment they are having. A lot of them do not seem to know what chemotherapy drugs they are having. I do believe in being informed and I never stop asking questions.
It is true that appointment times are very short, especially the physical check ups after treatment finishes. It is also true that the waiting rooms are overflowing and I think there is a tendency for doctors to talk down to patients. I think from the beginning you have to show that you are informed and that you are going to be in control of what is happening to you. I do remember that when at my request my breast cancer consultant referred me to the NHS Homoeopathic Hospital in Bristol, my first appointment there was 45 minutes and the others about half an hour. I really thought the consultant there got to know me and all her reports went back to my breast cancer consultant at Exeter.
I was interested to know that Michael had collected How Britain Really Works from Norwich library. I do not think I would be able to get it from Exmouth library or even Exeter.
I shall be very interested to know what you think of it. I have managed to move on from the chapters on the Economy, Politics, NHS, and Education, to the Military. I just think this country is in a mess.
I do agree with you that we do not have anyone with leadership in the Government and the Opposition is not that great. I do not think we have had good governments since the 1945 Labour Government. The Blairites were just a load of Conservatives and a lot of them are now filthy rich. I do believe in social democracy but I do not think we shall ever get it in this country. I think Labour has abandoned the working class and keeps sitting on the fence when it comes to any decision. Tomorrow Raymond and I are supposed to be voting in the Local Elections and we do not like any of the candidates! Devon is not very progressive. We are supposed to know our place!
I do hope you are feeling much better and that you will continue to make progress.
I do hope that Helenlouise will not be kept waiting too much longer to know about treatment.
Take care. Regards to Michael.
Love.
Sylvia xxxx
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Hi Helenlouise,
I'm sorry that there's yet more waiting for you to cope with. Late June does seem quite a way off, though, as you say, it makes sense to wait for a positive scan. You're in a very difficult place at the moment and it must be so hard to endure
I can absolutely understand your 'time bomb' analogy and your concerns for your family - especially if there's a spread to the brain - all of this really is the worst case scenario though. Your very worst fear. As Sylvia has said, people can and do live for a long time with mets and they don't all feel dreadfully unwell either.
That you've come to terms with your (possible) fate, says a great deal about your strength of character. Hope your biopsy heals very soon, as you really do need to book that holiday and have a break from waiting for tests/scans/results. Easy to say 'live in the moment', but I guess that's all any of us can ever do once we've been diagnosed with this horrible disease.
Just keep on feeling well.
Very best wishes,
Gill X
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Hello helenlouise,
Thank you for answering my questions.
I was having another look at all your details and thinking what a lot you have been through.
I can see that you had a lot of chemotherapy and radiotherapy and so understand the limited options for your treatment. Do you think the radiotherapy has played a part in the skin metastases?
I was doing a bit of research to see if there was any way I could find information that might help you. You might like to have a look at skin metastases on the breast cancer care site. I just Googled skin metastases in breast cancer:
I printed off six pages here and found these pages very helpful and easy to understand.
1. What are skin metastases?
2. Symptoms of skin metastases.
3. Tests for skin metastases.
4. Treatment for skin metastases.
Types of treatments. Here I picked up on electrochemotherapy. This led me to
5. Electrochemotherapy (sometimes called ECT).
I read this with interest because I had heard of it but I did not really know what it was.
I was wondering whether this would be of any use to you.
"Electrochemotherapy combines a low dose of a chemotherapy drug with electrical impulses. It is given directly to the area being treated to relieve symptoms of skin metastases."
Studies have shown:
- Helps stop bleeding, broken skin (ulceration) and pain.
- Reduces the size of skin metastases.
"Using electrical impulses allows the chemotherapy to work in the treated areas only, with little or no effect in other areas."
There is a diagram and an explanation of how this works. I thought it was very clever.
How does it work?
When is it given?
How is electrochemotherapy given?
Side effects.
6. Support for living with secondary breast cancer.
It does state that Bleomycin is the chemotherapy drug most commonly used. Cisplatin is another chemotherapy drug that may also be used.
I have heard of cisplatin but I have not heard of Bleomycin.
Thinking of you.
Love.
Sylvia xxxx
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Hi helenlouise
You have been left in a murky situation, but I think you have made lemonade out of the big lemon life has given you. Going to Japan sounds like the perfect thing to do, I am picturing the beautiful gardens you will see.
Doing nothing doesn't sound like a good option I did look up the Morpheus clinical trial. I learned it will be tried on 7 or 8 different cancers, TNBC being one of them. I did not learn much else.
I am sorry you have to do the waiting game, I hope they will do interim checks between now and the CT.
You are certainly handling this with grace, I'm glad work and family are keeping you occupied.
Thinking of you and sending hugs to you,
Love, Mary
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Hi, I'm sorry I did not write to you before. some nodules have appeared in the right lung that did not exist in the last TAC of 2016. I am going to do one and thoracoscopic lobectomy on Thursday, May 9th. I trust they are not matastastic or another primary cancer.
Abrazos
Marias
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Hello Mary,
I was glad to see you back on the thread. How is everything with you?
Thinking of you.
Love.
Sylvia xxxx
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Hello Marias,
it was so good to see you back on the thread. I was so sorry to read that you are having even more problems. I do hope that the nodules in the lungs are not going to bring yet more problems for you. Please let us know how you get on next Thursday May 9th.
How have things been going with you? Have you completely recovered from everything to do with your thyroid glands? Are there any problems with reference to your breast cancer?
Are you still doing plenty of walking?
We get a bit of news about Colombia, but only with reference to what is going on in Venezuela.
Abrazos.
Sylvia
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Hi Marias,
I'm sorry that you find yourself in this situation. Waiting for investigations and then results is extremely stressful. At least you only have a week to go, so your doctors are getting on with it very quickly. In the meantime I expect that you have some difficult thoughts to cope with.Try to be positive - though I know that's much easier said than done.
I hope the week passes quickly and that all goes well on Thursday 9th. I'll be thinking of you.
Love,
Gill X
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hi everyone, thanks for your wishes, comments and suggestions. I have looked at ECT and asked my MO. It’s is not approved for use on humans in Australia at this time. Morpheus looks like the best option for me at this stage. Trying hard not to dwell on the pathway to the trial and focus on staying well.
Best wishes to all x
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Hi Sylvia
I am okay, getting ready to go to another therapy session today. Last week I told the therapist my main dislikes about this process of recovery. I had a painful weekend after doing a certain prescribed exercise which caused very sharp pain for the next couple of days.
1. The pain.
2. Always being afraid I have damaged something inside the shoulder.
2b. Not knowing exactly what I should and shouldn't have liberty to do without causing harm.
The therapist was able to move the offending arm in certain ways on Monday which caused the pain to go away by Tuesday. I suppose I am like most everyone else, just impatient with the long process' I dropped by a friend's house yesterday, he had the same surgery about 10 days ago. His wife is still helping him with showers, dressing, and whatever else. He was surprised that I had been doing all this alone for almost 2 months. I have decided that a perfect candidate for this surgery is a bald married man, they only need minimal grooming and the wife can help with everything else!
We have a family wedding this weekend, relatives from out of town are already here, it has been another busy week.
I see that Marias is back, good to see her, but sorry she is having yet another problem.
I will talk to you again soon, I think of you often
Love, Mary
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Hola Marias!
It is good to see you here, but I am sorry you have uncertain news.
I will pray the nodules in your lungs are nothing serious when you are tested on May 9. Do you have symptoms of anything? Have you been feeling well?
I hope you have had some good times since we have last talked. Have you traveled?
Take care, and please stay in touch, talk to you soon
Love, Mary
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Interesting article in the Times Magazine this morning (sorry, paywall, so can't link) with Victoria Derbyshire, who had hormonal breast cancer about four years ago. She said that it was 18 months before she felt able to go without a wig, which cheered me up as I'd been feeling that my 9-month regrowth was a bit feeble.
Susie
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here some news. Feom.venezuela.
https://www.facebook.com/1048989446/posts/1021710876560514...
Presidente of Colombia let that.soldiera frontera usa stay here un Colombia. They want to do what they did un Libia. Kill Maduro on the hands of Venezuela people
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Hi Susie,
That's a relief. I thought my hair was doing quite well at first, but I still have a widow's peak and an almost bald patch across the top. I wouldn't call it hair either , more like a weird sort of fur. I'd almost resigned myself to wearing a wig forever, although I only completed the FEC treatment in December.
Gill X
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Hello Mary,
Thank you for your post. I do hope you will be pain free soon. I do think that physiotherapy is too demanding sometimes. Back in 2006 when I had a bit of a puffy right hand and arm (a bit of lymphoedema) I had a couple of sessions of physiotherapy at the hospital and exercises to do at home and I remember how demanding I found them. I am a great believer in going gently and slowly at your own pace.
I do hope all goes well with the family wedding.
Love.
Sylvia xxxx
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Hello Susie and Gill,
I think 18 months sounds about right for hair growth after chemotherapy.
I remember that I wore my wig from November 2005, all through 2006 and then to about April 2007. I remember that in April that year I suddenly decided to go into town without the wig. My hair had grown back wild and curly! Please be patient. It will grow back.
Love to you both.
Sylvia xxxx
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Hola Marias,
Thank you for the link which I shall have a look at later on.
I am very interested in what is going on in Venezuela and keeping my fingers crossed for peace. South and Central American countries have suffered so much from colonialism etc. I think the world is in a very dangerous state.
I do hope you are feeling better.
Abrazos.
Sylvia xxxx
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Hello, Gill,
Yes, I have a widow's peak too. I am a widow, mind, so perhaps it's apt.
Just spent 20 minutes anointing myself with scalp treatments and 'nourishing' conditioner.
Susie
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Hi Susie,
Good news about eyebrows and lashes. All lower lashes are growing - I may have more than I started with. Eyebrows are coming back too. Nose hair is growing far too quickly and I've had to get the tweezers out - ouch! Moustache doing well.
Gill X
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Rosie, Susie, Sylvia
I had chemo starting in March of 2014. Lost all the hair everywhere while infusing the Adriamycin and Cytoxan, and then noticed that while doing the Taxotere I had fuzz starting to grow. The first time I went out wig-less was to a Christmas party in December 2014. It was very short and curly, and steel gray with strands of silver. It actually looked good, it has gone through many changes since.
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