Calling all triple negative breast cancer patients in the UK
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Hello everyone,
It is Friday again and another week has gone sailing by. Here in the UK it is bank holiday weekend that we call Early Spring Bank Holiday. It looks as though the weather might be fine and relatively mild at 15 degrees in Exmouth, which means people will be out in force in their summer clothes!
I do hope the week has not been bad for all of you going through treatment and I want to say a special hello to our American friends Placid44 and Cynthie who are going through radiotherapy. We all send you our best wishes.
To our Canadian friends slv58 (Shari) and Sjesse12345, who are going through chemotherapy, I do hope you are not feeling too unwell. This treatment will come to an end.
We have not heard from 3wishes and I am not sure what is happening with you. I think you were going to have a test for BRCA1 and then a mastectomy. Please let s know how you are getting on. I am not sure which country you live in.
To Carolben in South Africa and who is going though chemotherapy again for mets to the lungs, I would love to know that you are proceeding well with your treatment.
A big thank you to those of you who have posted regularly although you have finished treatment. We do need you on board to be there for others.
To Michael, sam52, PeterandLiz and Sam_UK, I do hope you make the most of the three day weekend and to Sam_UK, I just want to say that I hope you are managing during this difficult time for you and that you will manage to enjoy the long weekend.
To everyone, please keep the thread going and do not be too shy to post and bring up any topics that you think need to be discussed. To the newly diagnosed, do not be afraid, take one thing at a time and deal with each stage as calmly as you can, diagnosis, kind of breast cancer, receptor status, node status, stage, grade, scans before and after treatment, treatment (surgery, chemotherapy, radiotherapy), short and long term side effects, and reconstruction if relevant. Do not be afraid to ask your medical team questions and apply BRAIN.
Wishing everyone all the best.
Sylvia xxxx
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Hello adagio,
Thank you for your post. I was glad to know you had an enjoyable visit to San Francisco.
I thought you touched on a good point about what to do when eating out.
I do find it is a problem in the UK and I do not eat out that much. The restaurants are certainly not leading the way here in the encouragement of healthy eating, as far as I am concerned. Most of them seem to be serving up the same food and I suppose it must be what most people want. The emphasis is on meat and poultry, served up with mountains of chips (French fries) and if there are any vegetables it is a token serving of peas (often canned). Fish is not emphasised much, except for fish and chips or fisherman's pie, which is full of dairy. We have loads of Chinese and Asian restaurants but I am not keen on that food. In the UK people seem to like full English breakfasts, roast dinners, especially on Sundays, and carvery meals with all you can eat food. There are vegetables but most of them have been adulterated with unhealthy dressings and sauces.
I was glad to know you like the seven rules to live by. I am sure you will try to stick to them.
I see on my diary that your Victoria Day is not far off and I do remember all the activity at the garden centres.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I thought I would let you know that I went for my six monthly check up at the hospital this afternoon and it was with my oncologist. I am relieved to report that, after a physical examination, she told me that everything was fine. She said she could not believe that I was almost eight years out since diagnosis and how well I had done after such a rocky start eight years ago. She told me that she would be very happy to keep me on for another two years until I reached ten years out. I told her I was more than happy to stay with her.
I now have to have check ups just once a year and that will be with her, my oncologist. After nearly eight years I have now been discharged from visits to my breast cancer surgeon. I have also been discharged from my endocrinologist, who is also my breast cancer surgeon. I am considered 'cured' from my hyperparathyroidism – over active parathyroid gland.
There was not much I could discuss with my oncologist about breast cancer with triple negative receptors, as treatment seems to be about the same as it was in 2005 except perhaps for chemotherapy every week, or every two weeks, rather than every three weeks.
I am posting this to encourage everybody and to tell you that you can get through this.
I was analysing my feelings before going to my appointment and can tell you that after all this time I still felt very nervous and on edge. My husband, Raymond, can confirm this. I have kept extra busy all this week to try not to think about the appointment. Last night I found I could not concentrate and had all kinds of thoughts running through my head.
This afternoon, before going to the hospital, we went for a drive along the seafront and I felt nervous in my stomach. I do not think I saw much of the seafront!! Sitting in the waiting room at the hospital I felt very cold and nervous. I was so relieved when it was all over.
I did ask my oncologist about my osteoporosis and asked whether it was related to my breast cancer treatment, because I have always been a bit confused about this. She said it was not related to the chemotherapy or radiotherapy and that it was due to the hyperparathyroidism and a natural consequence of ageing.
With reference to breast cancer treatment and the development of osteoporosis, she said that this happened in pre-menopausal women with hormonal breast cancer and was related to the anti-oestrogen treatment. I thought you might find this information useful.
She did ask me how the neuropathy in my feet was and I told her it was still there, but that I could live with it. She told me that it was definitely caused by the taxane drug, docetaxel (Taxotere). I assume you would get the same problem with paclitaxel (Taxol). Apparently there is no cure. As for the osteoporosis, I told her I was taking calcium and vitamin D and had added strontium citrate. She seemed fine with that.
On another matter, please read the latest e-mail from Cancer Active and what Chris Woollams has to say about Calorie restriction and improved survival times, The Ketogenic diet, Ginger and prostate cancer, Viruses and prostate cancer, High fibre diet restricts prostate cancer development, Cancer advice but not from John Hopkins, Beating cancer with chemotherapy and better drugs, Everything you need to know to help you beat cancer, the Rainbow diet and how it can help you beat cancer.
I shall probably post more when I have read all this in more detail, but do urge you to read them for yourselves, and post your comments so that we remain interactive. Remember to sign up for the newsletter, which is free, and then go to Cancer Active to get details of everything underlined in the newsletter.
Do not forget to read Junk Science. I have just read numbers 48, 49, and 50. I think the latest numbers are 51 and 52. These are truly fascinating and interesting. I am probably going to go to number 1 and read them all.
Apparently Junk Science has now been spun off from Cancer Active. You will find number 49 of particular interest as it has information about cancer in all aspects and how to deal with it, items one to eleven, followed by What Cancer cells feed on a) to e) and then further numbers twelve to sixteen. This is a wonderful summary of everything we need to know.
Please let me know what you think.
Best wishes.
Sylvia
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Hi Sylvia,
CONGRATULATIONS!!!! Good for you only having to go to your oncologist once a year - that is a big step forward. So happy for you, and I strongly believe that you have done so well because you adhere to such a healthy lifestyle. Your story gives me such hope - I am years behind you in terms of treatment, but I sure hope and pray that I will do as well as you have done.
I think I actually agree with your oncologist about chemo not causing osteoporosis!! I hope her response has put your mind at ease.
I admire all the reading that you do about cancer and its various treatments - I just never seem to get around to it. Although I have started reading "YOur Bones" and it is a good book indeed. I also got another one from my local library called "The Whole Body Approach to Osteoporosis" which is also a very good read. This book is written by a chiropractor who was diagnosed with osteoporosis in his mid forties - he talks a lot about the relationship between chronic inflammation in the body and osteoporosis. It is quite clinical and scientific,. If you can get hold of it, I would recommend it.
Enjoy your sunny weekend in England and take time to relax and just "be".
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Hi Syliva, Adagio and all,
Just wanted to check in here to say how much I've appreciated the information and support during these awful months since January. I felt pretty isolated going through this in a "foreign" country. Even though I speak German and they provide good medical care here, "their ways are not our ways"
. Sometimes those idiosyncrasies made me furious, but for the most part it was hilarious! I'll be following this thread for a while to come, as I'm very interested in using nutritional weapons to fight cancer. Thanks for all the tips in that regard, Sylvia, as well as your interest and concern for each one of us!
All the best and continued excellent recovery and maintenance!
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Hello adagio,
Thank you for your post. Thank you for your kind words and I am so glad to know that my story helps you. From your posts I know that you try to do all you can to help yourself.
It looks as though, judging by what my oncologist said, that the osteoporosis risk is for pre-menopausal women with hormonal breast cancer whose menopause is brought on early due to their treatment and the anti-oestrogen medication following standard treatment. I am quite annoyed about the fact that routine blood tests do not include checking the parathyroid hormone level, which means people can be walking around with no symptoms but have parathyroid problems causing calcium to leach from their bones. As they say, it is no good crying over spilt milk (soy, of course!) so I have to live with it.
I was glad to know you are reading that book Your Bones. It will steer all who read it away from any bisphosphonates.
Thank you for the title of the other book. I shall try to read it some other time.
Are you under the supervision of a rheumatologist for your osteoporosis? I have never been referred to one.
I continue to take the strontium citrate and have no ill effects.
Yesterday was a lovely day here and the seafront was absolutely packed.
Best wishes.
Sylvia xxxx
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Hello Cynthie,
Thank you for your post. It was nice to hear from you. I am glad that you found the support helpful on this thread.
I can understand the difficulty of undergoing treatment in a foreign country even if you speak the language. It is never quite the same as being at “home”.
Yesterday I was listening to something on the radio during which the health system in France and Germany were being praised and the suggestion was that our National Health Service should be more like it. I think the trouble here in the UK is that our health service is overloaded and is finding it increasingly difficult to cope. I think, because it is 'free' at the point of treatment, people here abuse it and forget that it is funded by taxation and is certainly not free.
Have you now finished radiotherapy?
I hope you will continue on the thread as it is important for others who have been through treatment to motivate others and support them.
Thank you for your kind words.
Did you learn German while living in Germany or had you learned it before? Is German taught in schools in the US? It is not taught much in the UK anymore.
Thinking of you.
Sylvia xxxx
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Hi Sylvia
My take on the Tamoxifen video was that all drugs have effects outside of their therapeutic profile and the video seemed to suggest that Tamoxifen may have an effect on TNBC. I recall when Retuximab was released that in was only for use in fNHL because it is the only Lymphoma that expresses CD20, the therapeutic target for the drug. However they started to use it for other types of Lymphoma and now it seems that it is used in all types.
I did read an article about the cost of drugs but I don't know the answer, there have been no antibiotics developed since 1989 because there is no profit to be made. There must be a happy medium somewhere.
I hope all in the UK and Ireland are having a nice relaxing holiday.
Michael
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Sylvia, it is very interesting to compare the strengths and weaknesses of each countries' health care efforts.
Germany's system seems to be very well run and provides good care for the vast majority of the population. However, if you earn over a certain amount, you must purchase your own health insurance and are considered "privately" insured. (We are so designated with our American insurance.) Private patients have a definite advantage in this system---we can see the top doctors, obtain a wider array of treatments. Also, many providers will only take private patients. But even "public" patients can choose their own doctors and certainly when it comes to something as horrendous as cancer, their care would be similar. The bottom line is: You can't have it all!
There's always a give-and-take, cost-and-benefit involved.The biggest weakness of German medical care from a patient's point-of-view is that we are treated like children. Of course there are exceptions (one of my ROs was very forthright and open in discussing my treatment) but overall the doctor is a revered, beneficent Parent who certainly Knows Best.
We've been in Germany for over 20 years and it's a great place to live, in spite of occasional rants about my radiation clinic. Germans are honest, direct and will do anything for a friend---they have totally rejected the twelve-year horror of Nazism and are probably one of the most peaceful populations on the planet these days. (The Scandanavians roamed the continent wreaking havoc for centuries, right? And now they offer peace prizes, haha!)
I learned German here, having studied French in school. In the US, three European languages are offered in schools: Spanish, French and German. In larger school systems, Russian, Chinese or Arabic might also be available. But the instruction is not very good in learning to SPEAK languages. And we don't have much opportunity to practice...
Radiation is over for me and I'm healing rapidly. So glad to hear that you've achieved one more recovery milestone!!
Cynthie
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Hello Michael,
Thank you for your post. It is always nice to hear from you.
I do appreciate your explanation of drugs, that were designed to target certain things, may be of use in others, although why this should be I do not know. However, it is a good thing if that drug can now be used for other lymphomas. I do hope you are doing well.
It is very worrying about no new antibiotic drugs being produced since 1989 because there is no profit to be made. It looks as though the drug companies have no social conscience and no concern for the sick unless they can pay. Are we all doomed? I have read recently that the latest drugs coming along for cancer will be too expensive and not allowed on the NHS because of NICE, who makes decisions solely based on cost. I think everything is being rationed and age discrimination is rampant in the NHS.
You might be interested in reading the information on the following link.
http://www.breastcancer.org.nz/news/bcac-news/SORBET-trial
The title is Trial looks at Tamoxifen for triple negative breast cancer.
I vaguely remember Liv mentioning something about this trial. It does say it is for women with triple negative metastatic breast cancer.
From reading this link, I discovered that women with ER+ breast cancer have different receptors.
Read the article and you will see that there is oestrogen receptor alpha Erα which is traditionally used to determine the oestrogen receptor status of breast cancer, and then there is the lesser known oestrogen receptor beta ERβ. Apparently some women with TNBC may express oestrogen beta but not oestrogen alpha.
It looks as though women with oestrogen receptor beta but not alpha had longer survival times when treated with Tamoxifen when compared with women whose tumours did not express either oestrogen receptor.
It seems to me that women with one of these receptors or both, should not strictly be diagnosed as triple negative. I am not sure how long these differences in hormone positive receptors have been known.
I do not know whether this difference in oestrogen status is the same as the distinction as luminal A and luminal B categories of hormonal breast cancer.
It looks as though you have hormonal breast cancer, luminal A, luminal B and/or HER2+ and then triple negative breast cancer.
Let me know what you think of the article.
I have also read in the past about the idea of manipulating TNBC to make it positive and then treating with Tamoxifen.
I do wonder whether all this is done to make use of cheap drugs in the same way that the pharmaceuticals are pushing statins on everyone and that doctors over-prescribed antibiotics.
Thinking of you and wishing you all the very best.
Sylvia.
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Hello everyone,
If you have been reading the latest posts between Michael and me you might be interested in the following link, which is about manipulating TNBC into ER+ and then treating with Tamoxifen.
The link is:
http://clinicaltrials.gov/show/NCT01194908
I have also noticed discussions on another thread about treatment for TNBC with copper depletion. The link is:
http://www.cleveland.com/healthfit/index.ssf/2013/03/copper_depletion_shows_early_s.html
All of us need to keep up to date with all the latest information. Please let me know what you think about all this.
I hope you have all had a good weekend and a good long weekend if you are in the UK or Ireland.
Linali (Lindsay) I have answered your PM.
Best wishes.
Sylvia.
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Hello again everyone,
I am not a doctor but I do get concerned about manipulating the normal process of the body and since I am forever asking questions about information that I come across, I have just looked up what happens in a person's body if you are depleted in copper. I already knew that copper is a trace element but is very important in the proper working of your body. I Googled and found the following link:
http://www.umm.edu/altmed/articles/copper-000296.htm
Your comments are welcome for all of these links and are needed to keep the thread interactive.
Best wishes.
Sylvia xxxx
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Hi Sylvia
I read the article about the Oz/Nz clinical trial but I am not sure I understand it.
I think NICE has brought a degree of uniformity to treatment but perhaps it has stopped doctors using their own judgement. Prior to my current treatment starting my consultant seemed to be going through a check list of tests etc. Presumably to meet the NICE criteria. At the weekend I was reading a consultants opinion about Janette's case and he points out in the letter the NICE guidelines but he says that "they are only guidelines and doctors are expected to and must use their own judgement."
As far as lymphoma is concerned the treatment protocol seems to be pretty standard worldwide apart from Japan. I don't think I see the same uniformity in BC treatment. In Janette's case, although she had clear nodes I don't understand why she was not offered radiotherapy. With such a high risk of relapse it would seem to me to be a no brainer. Who knows it may have done some good.
Michael
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Hello Cynthie,
Thank you for your most interesting post. I was very interested to know about the German health care system. I have read that it has a good record for cancer treatment. However, the German system, after your explanation, does not seem as equitable as I thought it would be. It really is two systems, one private and one public. In that way it is the same as here. We have private health care, which is very expensive, but allows you to get quick and privileged treatment. Patients may even be told under the NHS there is a long waiting list, but if they would like to pay they can get immediate treatment. A lot of consultants in hospitals work in both sectors. We do have a choice of hospitals now, but most patients want to be treated as close as possible to their homes.
I do agree that there has to be a certain give and take and a cost benefit involved. I have no complaints with the treatment that I have received on the NHS.
I think it is the same here in England. Patients treat doctors like gods and do not ask enough questions. They will not put themselves in charge of their illnesses. I took charge of my breast cancer from the very beginning and wrote and sent a letter to my consultant asking all sorts of questions. She seemed impressed with this and said it was very unusual and that most patients did not want to know anything and just accepted the treatment. I think it might be different now because of all the information available on the internet.
I was interested to know that you find Germany a great place to live. It does seem to do better than other European countries. In the UK we seem to be in a perpetual muddle and I think a lot of it is because our politicians will not accept that we are just a small island and that the days of exploitative and ruthless Empire are over.
I think the whole of Europe has been exploitative and ruthless in the past. I think 'we' were the worst.
I was interested to know that you learned German in Germany and had studied French at school. I did not know that German was taught in the US. At school I learned French and Latin and then Spanish. German was beginning to die out. In the UK now I think Mandarin is beginning to be taught. There is nothing like living in a country to learn the language.
I was glad to know that your radiation treatment is over.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for your post. I was interested in your comments about NICE.
I was very interested to know that you had been reading a consultant's opinion about Janette's case. How did you get hold of that? The NICE advice may be only guidelines, but they can make it a problem for doctors to prescribe drugs. I do remember all the women who were having to go to court to get Herceptin when they were HER2+. You also have individual PCTs who decide not to fund certain treatments. For example, I was taking oral Iscador during and post treatment and it was being prescribed through the Royal Bristol Homoeopathic Hospital with the approval of my breast cancer consultant. I had a rest from it as advised and then when I wanted to go back on it the PCT in East Devon would not approve it any more. I think that it was a pity because it is an immune booster and used in the treatment of cancer in Germany.
I was interested to know that the treatment for lymphoma is uniform worldwide apart from Japan. How do they treat it in Japan?
I agree there does seem to be some differences in the treatment of breast cancer. There are slight variations in chemotherapy drugs but not that much, certainly for primary breast cancer, of whatever type and of whatever receptor status, with the addition of Tamoxifen, Aromatase inhibitors and Herceptin, where applicable for hormonal receptors. Of course the taxanes now play a big part. The variations seem to be with surgery, lumpectomy versus mastectomy, and radiotherapy or not.
I agree with you that Janette should have been offered radiotherapy, especially because of her young age and the aggressive nature of triple negative. I remember my oncologist told me that chemotherapy is only a part of treatment, but it cannot cure. It is used often to shrink large tumours to make surgery easier. Surgery is very important because it removes the tumour and I was told radiotherapy is very important because it mops up any stray cells. It is quite possible that it would have helped Janette and it might have been advisable to have a mastectomy straight-away. It seems that sometimes it is difficult getting clear margins with lumpectomies. A neighbour of mine who was diagnosed about a year after me and whom I helped through her treatment, had to have two lumpectomies to get clear margins. She told me that at our hospital she was told that after two lumpectomies, if there are still no clear margins, you are advised to have a mastectomy. It seems it might be better to have a mastectomy first of all. She then had radiotherapy and she is still fine. She did not have any chemotherapy. She was just fifty at the time of diagnosis.
I think patients have to learn now to push for the treatment that gives them most peace of mind.
I was concerned to hear on the news the other day that more and more women under the age of fifty are being diagnosed with breast cancer. There has to be a reason for this.
I read yesterday that with TNBC which represents 15 – 20% of breast cancers, the proportion of metastatic TNBC is 30%. That is quite high.
I hope you have a good week, Michael. I have just read again the profile of Janette on the Janette Collins Foundation. It is such a sad story.
Thinking of you.
Sylvia.
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Good evening Sylvia
The consultant's letter I was reading from was obtained by her solicitor when she was considering taking legal action against the trust where she had her original treatment. The nursing care was appalling.
I cannot remember the details of the chemo combinations used in Japan; I have come across a couple of people who were treated there but their outcomes seemed equal to every where else.
I was due chemo today but my white counts hadn't recovered enough so it is delayed until Monday. I was asking my Consultant about a supplement that is supposed to help deal with Peripheral Neuropathy but as usual I think I managed to mislead him into thinking I was talking about curing cancer but one interesting thing he said was that they had found green tea stopped one of the drugs used to treat Myeloma from working. So I guess it is always a good idea to check before taking supplements during treatment.
I agree with you that there seems to be a breast cancer epidemic, probably a cancer epidemic going on. I have always had a theory that Cherernobyl is mainly responsible, but who knows.
Michael
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Hello Michael,
Thank you for your post. You always have such interesting things to say.
I think it is awful that Janette did not get good nursing care. This must have been very distressful and I am sure that an investigation would find it is quite widespread. Do you remember all the problems that Dulcie had? I still wonder what has happened to her. I also remember posts from others in the UK that were not happy about their care. It is bad enough to have a cancer diagnosis without having to put up with poor care.
I just wonder what we can do to stop it. Individually patients have to be informed and be one step ahead in their own care and treatment. I still think there is too much deference to the medical establishment. Patients have got to learn to speak up.
I was sorry to hear that you could not have your chemotherapy today because of a problem with your white counts. I do hope you will be able to go ahead on Monday.
I was interested to know what you said about peripheral neuropathy and a supplement to help deal with it. I have peripheral neuropathy in my feet. My oncologist told me again last Friday that it was due to the chemotherapy drug docetaxel (Taxotere) and that nothing could be done for it. I have mentioned before that I went to see a private podiatrist and got tested for peripheral neuropathy. She had me close my eyes and apparently prodded my feet with a needle and I felt absolutely nothing. She also told me nothing could be done about it, as did my GP. It is the only long term side effect from my treatment of which I am aware. It does not bother me most of the time but I am aware of a strange sensation in the feet.
I was most interested in what you said about green tea supplements. I do not take them, but I have been drinking green tea ever since diagnosis and all through my treatment. I drink a mug of Clipper leaf green tea in the morning, and Clipper decaffeinated green tea the rest of the day.
I do feel very concerned about the increase in the UK of more women under fifty being diagnosed with breast cancer. I am sure there are multi risk factors in their lifestyle and in the environment that is causing this. I also think lifestyle is the cause of women having their menstrual cycle as young as ten. The Victorians had theirs quite late in their teens. Yesterday I bought the Daily Mail and the Daily Express just to get the health pages, otherwise they are not my papers. I really like the Independent, the i paper or the Guardian. I have just been reading about the increase in lung cancer in non-smoking women, about which I shall post later. Apparently there is an article in the Express about alcohol and breast cancer, which I have yet to read.
I feel very frustrated when I keep reading on other threads about TNBC as though it is a type of cancer in its own right. It is a receptor status. Types of breast cancer are things such as IDC, DCIS, LCIS, Inflammatory cancer, Lobular, etc. They are divided into different receptor statuses such as ER+, PR+, HER2+, or negative in those statuses. I cannot understand how all this information is still getting mixed up. There seems to be, for example, a justification by those with TNBC receptors, to think that alcohol drinking does not play a part in their breast cancer, because it is not hormonal. I think the message that alcohol is a risk factor in breast cancer should have got through by now. We all know that there are many risk factors, but no one cause. When I see young women getting blind drunk I feel they are letting themselves in for health problems and I cannot see that lying in the street 'completely bladdered' as they say, can be fun.
I think I had better get off my soapbox. We certainly do not know the consequences of Chernobyl.
Very best wishes.
Sylvia.
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I've been lurking and reading on a few threads, not writing much. I feel like my life is, once again, on hold - have a cat scan tomorrow to see if the mets in my lungs have grown or remained the same. It's a big deal and I'm nervous, of course. So I kind of was waiting till I knew what was going on there before posting.
My big sister will be coming down for the appointment with my onc, where we'll discuss the results, that'll be only on Tuesday - quite a wait. I love it when she comes into docs appointments with me - she writes down absolutely everything that is said - can't tell you how many times I've referred back to her notes. I make notes before I see my onc, cos I kind of go blank and forget little things that could be important, and I get lists of questions from my sisters to ask too.
The Taxol chemo is getting a bit tougher - it hits me hard the first day, the steroids take me through the next 2 days, I crash on the 2 days after that, and am just totally exhausted. The nausea is well controlled, it's mainly the fatigue. But compared to my first chemo, this is seriously manageable.
I go to 2 yoga classes a week and walk on the beach, nice gentle exercise. I've started going to French conversation classes too! I may even take some ballroom dancing lessons, just for good measure. And of course, still the paragliding. We should all be doing all these things NOW, what are we waiting for? After being quite down for a little while, I woke up this morning with renewed joy at being alive, and that felt so good.
Thank you all for a really interesting and very informative thread here - I've learned so much.
Anyone hear from Liv? This cancer sucks, let's kick its butt!
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Hello Carolben,
I was so thrilled to see your post and just wanted to say hello and wish you all the very best for tomorrow. I do so hope that you will have good news from your scan.
I have had a busy and tiring day today so I shall post more tomorrow.
I have not heard from Liv and do wonder what has happened.
Fond wishes.
Sylvia.xxxx
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Hi Sylvia,
Another very wet day here so no gardening. There is a naturopath giving a talk at 10 30 at the centre so today is an ideal day. I have counselling at 1, it is a while since I have spoken to her.
On tuesday I had an appt with consultant radiologist to give me official result of bone scan.I wanted to ask ..where do I go from here to address the issues of pain and extreme tiredness. He suggested that I have further blood tests, most of which I had done a month ago. I do have appt with the pain consult 17th. I am disappointed that I just got a call from the breast nurse and was told that now because scan clear that its nothing to do with their dept.I needed to be able to discuss it with someone.
Just wondering if there are any other tests anyone has had, it is very worrying to feel like this nearly 3 yrs down the road.
BUT I am so happy that the scan is clear as I had thought the worst ....so maybe I do have a guardian angel.
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Hello Carolben,
Once again, thank you for your post. It was so good to have you back on the thread again. I can understand that you feel your life is on hold again, but all you can do is take one day at a time and try to get through whatever challenge there is for that day. Today the challenge is to get through the CAT scan. I saw that you said the CAT scan was to see if the mets in the lungs had remained the same or had grown. I certainly hope they have not grown, but was wondering can they have shrunk? I can understand how nervous you must be.
I am so glad to know you have your big sister coming to be with you when you see the oncologist to discuss the results of the scan. The wait until Tuesday will seem very long. When will these experts learn that waiting is an absolute torment? What you really want is to have the scan, the results and see the oncologist straight afterwards. It is good that your sister takes notes, because your mind can go blank. I know last Friday, when I saw my oncologist, and she was talking about my osteoporosis, she said something about a rheumatologist. I missed what she said but my husband picked up that she said something about what did my rheumatologist think about the strontium citrate I was taking. I have never been referred to a rheumatologist. I was in the care of my breast cancer consultant, who was also my endocrinologist, and I am now discharged from her, so I am wondering who is supposed to be taking care of my osteoporosis!!!
you are definitely right to prepare lists of questions to ask and to have them in writing, because it is so easy to forget what you want to ask on the spur of the moment.
How many doses of paclitaxel (Taxol) have you had now? I can understand how hard the first days are, but you are getting through this. I think we all know that the worst thing about all this is the fatigue. I think this can go on for a long time. The husband of a friend of mine, whom I encouraged through his prostate cancer, is very fatigued and I have told him that it is only months since he finished his treatment, so he will have to be very patient about his fatigue. He loves going to the gym but I think he is finding it very difficult and his hormonal medication is making him put on weight.
I am glad to know that you are finding your present chemo regime more manageable than the first lot.
I am sure the gentle exercise will be doing you a lot of good physically and mentally. I was most interested to know that you are going to French conversation classes. As you know, I used to teach French as a second language. It is a most beautiful language and I shall be interested to know how you get on.
Steady on with the paragliding! I see people doing all sorts of things on the Exmouth seafront and sometimes I can hardly bear to look.
I was glad to know that you are in better spirits. Please do not go through all this on your own. When you feel down come here and pour out your feelings.
I do hope Liv is alright. If anyone reading this post has any news of her please let us know. I have no way of getting in touch with her father, who sent me a couple of PMs, but they were through Liv, as he does not have a computer.
Wishing you all the very best. Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
Thank you for your post. It is nice to see you back on the thread.
I was interested to know that you are going to a talk by a naturopath at the centre today. Be sure to let us know how it goes. Let us know how your counselling goes.
I do hope you will be able to get some peace of mind with your pain issues and extreme tiredness. The tiredness could be the result of your cancer treatment. I have read that it can go on for years and that some people never recover. Do you think you could be anaemic and need some iron treatment? Have you had a blood test to see if your thyroid is under active, as that apparently can make you extremely tired and lethargic. As for the pain I would have thought that the experts should have got to the bottom of this by now. GPs seem to be fast becoming just people who refer you to a specialist, if they cannot match a pill to your symptoms. When it comes to cancer, I keep hearing tales of them missing your diagnosis.
Here in the UK it is a dull day and we have had a lot of rain during the night. It is still pretty cool and the weather is mixed, but that is England for you.
Please let us know how you get on today.
Wishing you all the very best and sending you fond thoughts.
Sylvia xxxx
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Hello everyone,
I have been looking through Tuesday's newspapers in the Health sections and thought you might be interested in looking up the following articles.
In the Daily Mail there was an interesting article about lung cancer, under the following heading.
“Why does lung cancer strike so many women who've never smoked?” by Rachel Ellis.
What caught my eye was the line which said non-smokers who live with a smoker have a 31% increase in developing lung cancer.
It also states that lung cancer in non-smokers may be due to a genetic susceptibility. Other risks are asbestos, radon gas (found naturally in the environment), solvents, diesel exhaust fumes and other people's smoke. Radiation for breast cancer is also a risk.
There is a lot more information and you might like to read the article.
Another interesting article was in the Your Health pages of the Daily Express on Tuesday May 7th. It was entitled “How much do you really drink?”. The article states that it is estimated that more than ten million Britons drink more than the safe recommended limits, and apparently alcohol related deaths rose by 20% over the past decade. The article points out that, if you drink regularly, even if you do not feel drunk, the chances of several types of cancer, stroke, heart disease and liver disease, all increase, as well as disturbed sleep patterns, low mood, weight gain and poor concentration.
The article states that, according to new research, even a daily drink raises the risk of breast cancer in women. According to Professor Mark Bellis, who is the director of the Centre for Public Health at Liverpool John Moores University, “there is a substantive amount of breast cancer associated with what is often called 'sensible drinking', when people do not even think they are taking a risk”.
There is a lot more inform in this article about how people go over recommended units and easy ways to cut down on your drinking.
http://www.express.co.uk/life-style/health/397517/How-much-do-you-really-drink
Also in the Daily Express on Tuesday in Your Health section, was an article entitled The Taste of Spring, and under it the lines “With the new season comes a crop of fresh produce which has astonishing benefits for body and mind”.
There is a list of foods with their nutrients and benefits. They include asparagus, watercress, radishes, rhubarb, cherries, sardines and lamb.
There is a small paragraph entitled “What's in the colour of fruit and veg” and it then lists greens, orange/yellow, red, white. The heading is Phytonutrients are the bio-active compounds in plants that supply their flavour and hue.
I know that all of us on this thread are interested in food and nutrition. I am sure you will be interested in this article.
http://www.express.co.uk/life-style/health/397524/The-taste-of-spring
Finally, there is an article about one woman's journey through ovarian cancer and there is a list of symptoms to look for.
On the same page there is a short article entitled Healthy Gums Key to Preventing Illnesses. For information visit bsperio.org.uk
http://www.express.co.uk/news/health/397503/Healthy-gums-key-to-preventing-illnesses
There is also a short article entitled Walk this way to live longer.
http://www.express.co.uk/news/health/397501/Walk-this-way-to-live-years-longer
I hope you will take the time to read some of this. Remember, it is up to us to take care of ourselves.
Hoping to hear from some of you.
Best wishes.
Sylvia
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Hi Sylvia and all,
We have had a couple of worrying days here mainly me more than Liz. She had no problem going shopping today but I stopped at home and worried!
Liz for the last 2 days has had a pain in her right side lower rib cage. We both thought it may be the cancer coming back.
She made an appointment at the doctors this afternoon (after shopping) He never examined her but did poke her in the ribs and back. When you hit the spot Liz does jump up and shout!
The doctor seems to think it is just a grade 1 mild rib strain so that is a worry off our mind but I am still not 100% certain but as the doctor said if it still persists for over another 10 days come back and he will get x-rays etc done.
I must say it has been horrible the last couple of days thinking it has come back, more for our 12 year old son who has problems with change. Our cat was run over 2 years ago and he still crys himself to sleep some nights thinking about the cat. we also cannot change things in his room as he does not like it. I can cope with what ever is put infront of me but really worry about him if anything should happen to Liz.
I have been cleaning all day keeping busy in the house as I have needed something to take my mind off it which Liz is pleased about. Looking at a few days holiday next week only to Butlins as we all love the swimming pool and Lazy river and they have some good offers on at the moment.
Peter
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Hi Sylvia,
How I wish that I had brought paper and pen with me as I cannot remember the names of all of the things that the herbalist spoke about.
Essentially it was what has already been spoken about..... sugar a big no no and carbs from grains that convert to sugar quickly. How important fruit and veg are and to keep the body as free from inflammation as possible and cells oxidised.
She mentioned silvestrol which is present in plants that is being looked into and also the theory that organic produce is beneficial because of natural phytomins????? not sure if thats what they are called. Anyhow they are the stuff that fights against disease and fungi in plants. The theory being that use of pesticides on fruit and veg mean that they no longer need to produce the phytomins ????naturally and we have been consuming more treated produce over the decades.This came up during a discussion why cancer diagnoses in general have increased so much. These are her theories but she did spend some time researching when she knew that she was coming to the centre.
We also had a discussion about use of any kind of supplements during treatment and it was stressed that it is so necessary to ask your doctors. One young girl could not take pro biotics, something that could be beneficial to others, because she was being treated for leukemia.
She had herbal teas for many other general complaints and I bought some salve for myself and some marshmallow tea and some bearberry tea for Kerry, it can help with cystitis.Aloe vera was used by some of the women too, to help soothe the throat and oesophagus after chemo.
It was felt by everyone that there needs to be a more joined up approach as many of the medical profession in Ireland would not approve or did not know about herbal or natural medicine. In other countries they do work in tandem.I know that this is only one persons theories and she did emphasis to always consult with your doctors.
It was very interesting and made me more determined to grow as much as we can.. weather permitting.
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Hello peterandliz,
Thank you for your post. I was so sorry to read that you have had a worrying time over the pain Liz has had in her right side lower rib cage. I know that we all worry over any strange pain or ache and tend to think the worst. Let us hope that your GP is right in what he has said and that it is a grade 1 mild rib strain. I can understand, Peter, that you still feel worried. If I were you I would insist on an x-ray in order to have complete peace of mind. GPs seem to miss a lot of problems and you do not want to take any chances.
I think all of us that have been through a cancer diagnosis can sympathise with what you have been going through. The awful thing about cancer is that we get through the treatment but then we have to live with the possibility of its rearing its ugly head again. I am nearly eight years out from diagnosis, and still have that worry. The fact that my oncologist is keeping me on for another two years makes me realise that she still thinks it could come back.
I can understand your worries over your twelve year old son. Children do not usually like change. They want stability.
I think it is a great idea that you are going to get away for a few days as that will help to take your mind off things. To which Butlins are you going? I hope you have a good time.
I appreciate all the support you give on this thread and how you have the time to offer sympathy to others. I thought you were really kind to Sam_UK. She has been silent for a while now, so I do hope all is well with her.
I have great respect for the people on this thread who, even though they have their own problems, take the time to support others. I hope you have a good weekend and send kind thoughts to you, Liz and your son.
Best wishes.
Sylvia.
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Hello linali (Lindsay),
Thank you for your post and for letting us know how things went at your centre.
There is so much information about that we cannot hope to remember it all. The most important thing is to have good nutritious and balanced meals. Your plate should emphasise fruit and vegetables, organic where possible, with some protein and carbohydrates. It seems to be that the information is definitely to avoid sugar and simple carbohydrates in order not to overload our body with sugar as we are told it feeds cancer cells.
Plant sylvesterols have been much in vogue lately and I have seen them in supplement form in my local health food store.
I think the word you are looking for is phytonutrients that are abundant in plant food.
I do agree that our food is being adulterated too much and I think that too much processed food, devoid of nutrients, is probably one of the reasons for so much cancer. We need to eat our food in as natural a state as possible. An apple is obviously more nutritious than apple pie! It is very important also to eat a lot of raw food as important enzymes are killed in the cooking process.
I do believe that we need a more joined up process, especially with cancer. This is why I respect Cancer Active and Chris Woollams so much, because he believes in an integrative approach to cancer. Doctors have blinkers on when it comes to anything except dishing out pills.
I have just received the first issue of icon magazine for this year (volume 10). It is the 10th anniversary of icon magazine and I have been reading it since I was diagnosed in June 2005. I would recommend you reading it. Did you know that icon means Integrative Cancer and Oncology News? This 10th anniversary edition has just about everything you need to know. These are some of the headlines.
Fiona Shakeela Burns tells of her two experiences recovering from terminal cancer.
Ten Years On. Mental stress and cancer, Depression, Mental attitude, Stress, Stress management.
There is a whole lot more in this magazine, including pages on breast cancer. I shall give more details when I have more time.
Keep well and have a good weekend.
Fond thoughts.
Sylvia xxxx.
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Hi Sylvia,
Thankyou for your kind words. I am on and off the computer all day normally doing nothing important so I am always happy to post if I think I have something worthwhile to contribute.
The worry at the moment has gone even though the pain is still there. These scares even though they are not nice I feel are important in our case (my case). It keeps it real and reminds me the importance to get out and do things incase it comes back.
Having said that we have found that its just nice sitting in the garden when the weathers nice or visiting places in our local area.
Peggy wrote something similar last week "The paradox of having a life threatening disease is that you find more joy in little things that you (speaking for myself) may have never discovered if you had never had cancer in the first place."
We are going to Skegness as it has a new tropical water park that has only now opened. Taylor our son loves swimming. £220 for 4 people for 5 days incuding food seemed to good to miss.
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Hello peterandliz,
Thank you for your post.
I do agree with your wise words and it is definitely important to live in the here and now and get on with each day. I do agree that the simple things in life do take on more importance and meaning when you have been faced with a life threatening illness.
I do hope you have a good break in Skegness and that your son, Taylor, will have a good time. I do not know a lot about Norfolk, but during the nine years Raymond and I spent in Essex, before coming to Devon, we did have some drives into Suffolk and Norfolk. We went to Yarmouth, Lowestoft, Ipswich, Norwich and Cromer, not to mention Sandringham. We quite liked Cromer but it was very cold. We may have driven through Skegness a long time ago. It is supposed to be famous for its fried Mars Bars, I think.
It has been a chilly weekend here in Exmouth and around Devon. I do not think next week is looking too good either. It has been very windy and when this happens all the sand from the dunes at one end of the seafront covers the pavements and roads. It is a real mess.
I have felt quite tired this weekend, so have not done a lot. I just felt I needed a lot of peace and quiet.
Wishing you, Liz and Taylor all the very best and a good break.
Best wishes.
Sylvia.
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Hello everyone,
As promised, here are the headlines from the anniversary edition of icon magazine. Here are the remainder of the headlines of Ten Years On. They are (as mentioned before, number 1 is Stress. Please see my previous post.):
2. The dangers of EMFs, Bionic Man?, Melatonin,.
3. Environmental Toxins, an inconvenient truth.
4. Localised Hyperthermia: Ablation or HIFU. Our top voted new cancer treatment of the last ten years (Background, The Treatment, The Politics, Ablatherm and other Cancers, A Real Breast Cancer Treatment Breakthrough, Next).
5. Increases in Cancer Survival – More probably due to the increased usage of complimentary therapies by patients.
6. The Directors of Your Good Health (1, The Microbiome. 2, They stimulate the production of your immune defences. 3, They are your first line of defence. 4, They release vital nourishment from your food. 5, They help you excrete toxins, chemicals and hormones. 6, They actually work with fibrous foods to reduce inflammation and kill cancer cells. 7, You harm them, you do not feed them properly. 9, You do not top up their numbers. 10, New-found importance in medicine. 11, Taking probiotics. 12, Recreate your super-body.
I hope you will take the trouble to look at all this information on line it it is possible and if you cannot find the magazine at your local hospitals or cancer support centres. It is well worth signing up for this magazine, especially this latest edition, which really sums up ten years of information and news.
One article in particular should be read by all. It is entitled 'Do British Women With Breast Cancer Still Get a Raw Deal? By Professor Karol Sikora, who is very well known.
I do not get much input a lot of the time from all this information, so I ask you once again for your comments.
We do not seem to have too many people posting who are actually going through treatment, nor those newly diagnosed, so I hope this is a good sign.
Best wishes to Placid44, 3wishes, sjesse12345, slv58 (Shari), and our good friends Carolben and Chatterbox2012 (Michael). Please let us know how you are getting on.
To all of you who have posted in the past, and have finished your treatment, I hope you are enjoying life and will pop in to say hello and support others.
I hope everyone has had a good weekend.
Best wishes.
Sylvia.
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