Calling all triple negative breast cancer patients in the UK
Comments
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Hello Peterandliz,
Thank you for that very interesting post about omega-3 supplements and a link to aggressive prostate cancer. I think this will come as a shock to lots of people as they really have been pushing omega-3 as a wonder cure for everything. This always happens. They push supplements and certain foods as miracle workers, then change their minds and these products become villains. I think we need to get our nourishment from food but the trouble is a lot of our food is grown in depleted soil and then often over-cooked. Another problem is that by the time it reaches our tables it is not that fresh and may have been stored for weeks on its journey to us.
I do agree that scientists have no real idea what causes cancer except that it is connected to our modern lifestyle. Surveys can prove anything they want to prove and they end up frightening us. In the end you have to make up your own mind what you feel is best for you and hope for the best. The other problem is that a product is pushed for its health benefits and then everyone concludes that more must be better and so it is taken to excess. I think we need moderation in everything, a good variety of food, some physical activity and keeping away from toxins as much as we can without becoming neurotic.
I do not know what to think but there seems to be a constant battle going on between orthodox medicine and the supplement industry. How do we know whether it is the omega-3 fatty acids in the supplements or the fillers in the supplements that is causing the problem? I have read many times that there have been many deaths from orthodox medication but none from vitamin supplements. Whether that is true or not I do not know. In all of this research it would be interesting to know who funded this research and who employed the scientists.
It has been a much cooler day here and I have felt so much better for it. It looks as though it might be hot again tomorrow.
It is a pity that the Norwich hospital has not increased in size for fifteen years but good to know they are building a new building especially for cancer sufferers. It is sad that this has to be done but I think we are going to see more and more cancers. At the RD&E in Exeter the oncology department has expanded considerably and I could hardly recognise it as the place where I was treated in 2005.
It is a terrible situation to be in when you have cancer and are on a waiting list for treatment. Your friend needs treatment immediately. I do blame successive governments for letting so many people into the country which is now overcrowded and hospitals, schools, housing, transport etc. is being affected.
It is good that you have the Big C charity at the hospital where people can go to talk about what is happening to them. In the grounds of the RD&E there is a beautiful modern house where FORCE a cancer charity functions. It is a beautiful and relaxing place to go and nothing like a hospital setting. FORCE stands for Friends of the Oncology and Radiotherapy Centre, Exeter. Raymond and I went there often just to sit, have a cup of tea, chat with people etc.
The cancer will remain under the name of the primary cancer even when it spreads to distant organs. Some people seem to get this mixed up. If you have breast cancer that has spread to the lungs then you have stage 4 or metastatic breast cancer, not lung cancer. Let us hope your friend will get some good treatment. Doctors are not always right in their prognoses.
I hope all goes well with Liz's ultrasound scan.
Enjoy your weekend.
Best wishes.
Sylvia
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Hello PeggySull
Just popping in to say please let us know if you get the test.
Fond thoughts.
Sylvia xxxx
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Hello Debra,
Thank you for another interesting post. I shall answer in more detail tomorrow as I am running out of time. I did read that you do need to increase your vitamin K if you are taking vitamin D, they interact with each other. You get vitamin K in cabbage and other foods of that family. If you eat a balanced diet and eat carbohydrates in moderation I cannot see that you can go far wrong.
I shall post more tomorrow.
Thinking of you.
Sylvia xxxx
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Carbs in moderation ... I'm not sure if mine are in moderation, I sure hope they are!. I use MyFitnessPal to map out an ultra low fat diet. But when you plug in a small % for the fat, it increases the protein and carb categories. :-) So my thing has been mainly focused as this: low fat, 2 brazil nuts a day (they have selenium), veggies, fruit, whole grains and protein, but not overdoing it on the protein. Carbs come in under veggies (orange potato plain) and steel cut oatmeal, whole grain crisp bread, and a few unsalted organic pretzels. So I do have carbs, but when I do, they are whole grain, or slow carbs. Never white.
Sylvia, your picture just makes me smile. It almost looks like you are typing, since you are sitting with such good posture and your hands in your lap. Now, if you had a laptop under your palms in that picture, it would look you were typing to us. For some reason, when I see your picture I really feel like I'm right there watching you type to us. LOL Hard to explain .... but meant fondly!
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Hello Debra
Thank you for your post. I am sure you are doing fine with your nutrition. It sounds to me as if you are on a very healthy diet and doing all you can to keep well. Be careful with the ultra low fat as we do need fat in our diets. We need healthy oils such as olive, avocado and canola oils. What we need to avoid is saturated fat and transfats that are found in a lot of unhealthy food, such as that in cakes, pastries, biscuits, crisps and chips and processed foods. I think the secret is to keep away from junk food and not to have too much in the way of animal foods, especially things like bacon and sausages that the Brits seem to eat a lot.
Your diet sounds similar to mine, fruit and veg, whole grains and some protein. Remember that the experts tell us that potatoes do not count as vegetables. I tend to have some fish, carrots, broccoli, some cooked tomatoes for lycopene and flavour and then a grain or some beans or pulses. That would be a typical cooked meal for me. I also like salads mixed with something cooked, such as asparagus and/or mushrooms.
As I said, I think you are on a very healthy diet.
I am glad my picture makes you smile because smiling is good. I am not typing. When I type I always sit at my desk. I do like to keep a good posture, even more since I was diagnosed with osteoporosis. This diagnosis does worry me and I do all I can to keep good posture and eat a calcium rich diet.
I am glad that we all feel close together and that is the beauty of a small thread. I have found all the women that have posted in the past have had a great interest in nutrition and healthy foods. I really feel that they are all trying their best to keep this awful disease at bay. In fact, the women that I know here in my immediate surroundings that were diagnosed with breast cancer all looked fit and healthy. As my consultant said that in healthy women the immune system can get lazy and you end up with cancer! That is something that I found hard to accept.
Keep up the good work. I think you seem very up to date with all the latest technology. I have just very basic skills.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia,
Liz and I watched the channel 5 programme this morning. We are going to try half of what they suggest drinking fruit and veg juice with fish or chicken and salad. Only problem is Liz does not eat much fish. She will eat pink salmon out of Tesco's but hates smoked fish or any fish that tastes of pond water! So that leaves salmon, cod and haddock?
We bought 3 fresh fish a few years ago off the fish market in Turkey while on holiday. We took them back to our apartment and cooked the first one on the barbeque. Liz said it tasted of sea water so we gave the other 2 to some Turkish people living next door.
We both love chicken so at least thats better than red meat. We want to see if the healthier lifestyle makes a difference to Liz's aches and pains. all this is after our 5 days in Devon next week were it will be fried bacon and eggs for breakfast a carvery for dinner with cream tea's inbetween.
Lovely weather here today. Very hot going round Liz's friend today as she is having a house warming party but under a bit of a cloud because of the bad news and we are the only guests that know at the moment.
Hope everyone haves a lovely weekend.
Peter
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There is controversy on the Omega-3 supplement. I remembered reading about it in a couple of books I have, but the book where I was able to find it the quickest just now, I have included an excerpt from that book. I have also just downloaded another nutrition book last week, and will see if it mentions the Omegas.
Excerpt as follow:
"You need fact in your diet to build and maintain many parts of your body, including cell membranes, cholesterol, steroid hormones, and prostaglandins. ... The manufacture of prostaglandin is largely driven by the fats and oils we eat. Therefore, it's important to eat the fats that keep our prostalglandins in proper balance. Eating too much red meat tends to increase the prostaglandins that are pro-inflammatory, which means that they increase vasoconstriction .... platelet aggregation ... and cellular proliferation, along with supressing the immun system ... The oils that you get when you eat fresh vegetables and fish tend to be anti-inflammatory .... control cell proliferation and enhance the immune system." Source: What Your Doctor May Not Tell You About Breast Cancer How Hormone Balance Can Help Save Your Life, J. Lee, M.D., D. Zava, Ph.D., and V. Hopkins - pp. 290-291
It then went on to say that fresh unprocessed fats, in general is healthier. They also mentioned two additional books to read to find out more about this: Dr. Mary Enig's book Know Your Fats and Andrew Stoll, M.D.'s The Omega-3 Connection.
On the following page, 292 it mentions that too much omega-6 fats found in unsaturated oils, such as corn and safflowers and accelerate the promotion phase of breast cancer by enhancing formation of prostaglandins, which may increase free-radical-mediated DNA damage and stimulate cell proliferation and higher free estrogen levels.
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Hello peterandliz,
Nice to hear from you and I was glad to know that you and Liz watched the Channel 5 programme. I shall be interested to know how you get on trying a bit of the nutrition programme. Are you going to juice your fruit and veg? If you can eat salmon, cod and haddock, that will be fine. These are the three types of fish that I tend to buy and I buy them in Tescos but in the frozen section. I always but the packets of wild salmon. They have some very nice salmon at the moment and it is £3.25 for four pieces. The fresh fish at the counter in Tescos is now all farmed. I also buy boxes of haddock and cod at the frozen section. They cost £4.50 a box for four pieces.
I tend to poach them and then serve them with lemon juice, but often with some organic hummus. Fish is quite good if you have some halves of tomatoes fried in some olive oil and served with them. All the fish that I eat comes from cold water oceans which is supposed to be the healthiest fish.
Good luck and you deserve credit for trying.
I hope you have a good time in Paignton. It will probably be very busy.
I hope all goes well at the house warming party and that everyone will rally round your friend if and when she tells them. If I were her I would do my best to take one day at a time and not dwell too much on the prognosis. We never know what can happen with cancer. We know of people who have been told there was no hope and who are still alive years later. If that were me I would be researching like mad to see what the best available treatment is and pushing to get it.
I have not been out yet but saw this morning that the Independent has an article about cancer, so I hope to get to read that.
Wishing you and Liz all the very best.
Sylvia.
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Hello Debra,
Thank you for taking the trouble to download some information for us about fat etc. What the excerpt says about fat backs up what I have read and what I believe. Fat of the right kind is very important in your daily diet and low fat diets can be unhealthy. I am sure the fat from oily fish is good for us, but again we should not go overboard. The oil in nuts and seeds is also very good for us. I eat these on a regular basis. As for oils, you need a mixture of 3, 6 and 9.
I hope you have a good weekend.
I was wondering which part of the US you come from.
I have just started reading a book by Patrick Holford. He has written so many books, about thirty, and they are full of useful information. The title of the book is The 10 Secrets of Healthy Ageing and it is written by Partick Holford and Jerome Burne. It is further titled How to live longer, look younger and feel great. There is a free online Bio-age check which looks interesting.
Fond thoughts.
Sylvia xxxx
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Hello sam52,
I am just popping in to say hello and hoping that things are not too bad with you. I shall post more later as I want to tell you about the response I received from a letter I sent to my GP about a blood test for checking bone density. I shall post the details when I have more time.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia,
Just a quick post as it is already 11.20pm.
I have been very taken up with things to do with my father and will post more on that later.
I look forward to reading what your GP has written regarding a blood test to check bone mineral density.
London is sweltering and the allotment needs constant watering.But it is a welcome change from the wet Summers of the last two years.
With love,
Sam x
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Hello sam52
It was lovely to hear from you. Are you now on your summer break or do you still have a week to go?
My GP replied to the letter I sent about trying to monitor my osteoporosis. I was asking about a blood test known as CTX. She replied that she was not an expert on osteoporosis but that she had researched CTX and found that it was not widely used and that to her knowledge was not available on the NHS locally. She further said that her understanding was that there was some evidence that CTX might be useful, but because it had not been statistically significant, it was hard to know whether the test was reliable.
She concluded by saying that she had sent my letter to one of the rheumatology specialists at the Royal Devon and Exeter Hospital for an opinion.
What do you think of this? I shall let you know what happens.
I do hope the situation is not too bad with your father. It is so very difficult as parents age. I am not looking forward to getting old.
I am finding the very hot weather most debilitating and shall be glad when it gets a bit cooler. We do need rain.
I hope to hear from you soon.
Love.
Sylvia xxxx
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Hello everyone,
I am posting about the headline in the Sunday edition of the Independent on July 14th. On the front page there is a picture of what looks like a cancer cell and our natural killer T cells attaching to it.
The headline on the front page is “Cancer – a cure just got closer*” “*Thanks to a tiny British company”. “Exclusive Report page 4-5”. The * refers to T cell therapy on which there is a short article within the main article. If you can get hold of a copy of the newspaper I would strongly recommend reading it.
On page 4 there follows an exclusive by Steve Connor, Science Editor, and the title is “Big pharma meets small lab – and the result could change lives of millions”. Beneath this it says “ A revolution is brewing on an English business park as scientists harness our natural born killers – the T cells – to target malign tumours”.
The link is:
There are some good illustrations to show how this works.
Some key words to help you in this article are – research on cancer immunotherapy – using the body's own immune system to fight tumour cells. Apparently this small company known as Immunocore believe they may have found a way so that cancer patients in future may be able to fend of their disease with their own defences.
Of course, this is all probably a long way off, five or ten years!
There is a lot more to the article, so please try to read it.
I find it encouraging to read that “all the pharma companies have come to the realisation that immunotherapy may hold the ultimate key to cancer. It is the missing link in cancer treatments that can give cures”.
Another week is beginning and the heatwave in the south of the country is set to continue. I hope that you will all have a good week.
To Michael, what do you think of this article in the Independent? Are you glad it is cooler in your neck of the woods?
To adagio, what do you think of the letter from my GP?
To Carolben, we have not heard from you for a while. I do hope you are not too ill.
To peterandliz, I hope you have a good week.
To linali and Mumtobe, how are things in Ireland?
To PeggySull, hope all is well with you.
To InspiredbyDolce, thank you for your PM. I shall respond later today.
To scouser47, let us know how you are getting on.
To Sinfullyd, have you made any progress since your last post?
Wishing you all well.
Sylvia.
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Good afternoon Sylvia
I have read the article and found it interesting. The action of the drug seems very similar to the monoclonal antibodies and it is interesting that Genentech, the developers of Rituximab, are getting involved with the company. I suppose the problem is that all this is so many years off and we cancer patients, family and carers want solutions now.
Today in NI it is quite overcast. There have been riots in Belfast and frankly a good downpour is one of the few things that puts an end to trouble.
Best wishes
Michael
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Hello Michael,
I was so glad to know that you had read the article. It is important for us all to keep informed and exchange views.I had noticed that the drug mentioned is ipilimumab, and it has one of the typical endings of monoclonal antibodies.
As you say, we want them available now. The good news about all this is that the new approach may be useful for metastatic breast cancer and others.
I have been watching all the news about the trouble that has broken out with the marches.What do you think about them? Are they really necessary?
Do you have any special plans for the summer?
Wishing you well,
Sylvia.
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Hi Sylvia,
Drove down to Torbay this morning. Have had a lovely day in the hottest outside swimming pool we have ever been in and the weather has been amazing. Had a walk along the beach and pier this evening. Liz spent nearly 2 hours in the pool as well and even with factor 50 suncream on she has got slightly burnt but not sore.
The weather gets hotter as you know over the next 3 days.
These are memories our 13 year old will never forget if the cancer comes back. If it does not then he will still have these memories so either way in our opinion we are doing the right thing. His education can be caught up with an extra year at college if needs be.
Regards Peter
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sylvia - I am impressed that your doctor took the time to research the test for you, and that she wrote to you and she sent your letter on to another physician. That is all very good in my opinion. Please keep me up to date as to what happens next.
I am not familiar with the CTX test, but I just googled it and from the small amount of reading I did - it seems that it is most commonly used to monitor people who are taking biphosphonate drugs. So perhaps if you (or myself) refuse to take the drugs for osteoporosis we might not meet the criteria for the test. CTX tests have been around since the 90's, so it is not a new test - I wonder why it is not utilized more!! I will ask my doctor (G.P.) about it when I next see him. I am not looking forward to our next meeting because he will want me to explain to him why I don't want the drugs. Yikes!! Still not ready to deal with this - just enjoying my freedom from chemo and radiation and lab work.
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Adagio, where about will you be travelling in South Africa? Hope you'll be able to get to a game reserve? We do have a beautiful country here! I hope you're having a ball!
Sylvia, you have been a huge source of information on this thread and have done a great job, and I thank you for that - your replies to each individual and the amount of time and effort you put into the thread is huge, and I know it's helped a lot of us!
I had a lower dose of chemo last week as my wbc had dropped quite a lot, and this week is my week off, so I'm having a much easier time of it.
I had a lump in my groin that was a bit worrying - my onc did a fna on it last week, and it's just a cyst - no malignant cells - whew, that's a relief.
I'm laying low at the moment - avoiding groups and closed rooms full of people etc, keeping warm - I just want to avoid any bugs at this stage of the game. I only have 3 more sessions of Taxol to go - next week and 2 more - the last one should be August 6th. Then I'm taking a chemo holiday!!! No more treatment for the rest of the year, hopefully it won't be necessary anyway. I'll have another ct scan at the end of August.
I'm going to fill in where I worked while my replacement goes on leave. I'll do 2 weeks, afternoons only. That'll be around the end of October. I'll be in Israel for +- 2 weeks from the middle of September, and Christmas with family in Johannesburg. So my year is planned, and chemo is not part of that plan!!
Anyway, of course I'm hoping that the nodules have stayed the same size, if maybe, maybe they didn't shrink some more, and that'll be remission.
So I'm being careful and looking after myself during these last few weeks of tx, just want to see it through with as little trouble as possible!
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Carolben - I will be in Stellenbosch for a week, (my husband will be working at the University there) then we will go to Cape Town for a week. Unfortunately I don't think we will make it to a game reserve unless you can recommend anything relatively close (and worthwhile) to Cape Town or Stellenbosch. We don't have time to go to Kruger Park or Port Elizabeth - plus I don't really want the extra travel involved - I am quite happy exploring the Mother City and the Winelands. I would appreciate any suggestions on "must see or must do" in Cape Town.
Glad that you are on the count down for your chemo and that it will soon be in the past. I am sure enjoying the freedom from labwork, chemo, rads etc. Thank God I feel very well and able to do some travel.
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Hi Sylvia,
Just a quick post and will do longer one later.
My sister is coming on a visit that was last minute so lots to do and 3 fund raisers this weekend.
An interesting article was posted to my facebook page from journeying beyong cancer, it suggests that people who have a diagnosis of cancer can suffer from PTSD. Something to do with the brain and chemicals and reactions.
I found that I could identify in some respects as it seemed after treatment finished that I became fearful of things that were normal before. Irrationally sometimes. Driving in particular was one thing and just a state of apprehension around alot of every day stuff. I havent gone over it in detail but will try to link it . Would love to hear your thoughts on it.
Must go pies to bake and flowers and herbs to pick
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Hello Debra
Thank you for your PM. I was glad to know that you liked what you saw of Exmouth on the web cam. It is a nice seafront and is a very popular family holiday resort. The children love the sand and dunes.
Best wishes.
Sylvia xxxx
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Hello peterandliz
I was glad to know that you are now in Torbay and having a lovely time there. You are certainly getting some hot weather.
As you say, whatever the future may bring, your thirteen year old son will have some happy memories.
There will not be much going on at school this week.
With nearly two weeks of exceptionally hot weather Raymond and I are feeling rather tired. According to the news on the radio this morning, this heatwave is taking its toll and apparently there have been over 700 deaths so far. It looks as though cooler temperatures are not on the horizon. There is certainly no rain coming, either.
We enjoy the cooler temperatures of the early morning.
Are you staying put in Torquay? It is not a place we know that well, as it is always rather busy. We tend to go to Exeter if Exmouth gets busy and do go regularly to Budleigh Salterton and Sidmouth. Exmouth is very busy because of the Sandy Bay holiday camp which increases the population by about 18,000. We also have Ladram Bay holiday camp a short distance from here.
Wishing you all well.
Sylvia.
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Hello adagio,
I shall certainly keep you up to date about what happens next about the CTX test and what the consultant at the hospital thinks. Of course, with orthodox medicine, there is always the same mantra about medication or systems not being tested with trials. However, I am cynical enough to believe that trials can be slanted to prove what is wanted to be proven. Recently I was reading that drugs are often trialled on young healthy people, even though they are to be used on more elderly people who are often on other kinds of drugs so you do not know the interaction. I saw this week that metformin was in the news again and this time it was about how it might be useful in preventing Alzheimer's disease. We thus have a cheap medication that is going from treatment of diabetes to use in prevention of breast cancer and now Alzheimer's.
I do not know what to say about the CTX test. Probably the UK will be behind Canada. What I have learned here is that it pays to question and ask about things. I do not think doctors here are used to patients questioning what they are proposing, but this could change because of all the information on the internet. It was only this year that the GP mentioned strontium. In the past, over eight years, I only ever heard about bisphosphonates from the 'experts'. One said there is nothing to lose in trying them, and two others said they were nasty. With the GP she mentioned strontium only when she realised I was never going to take bisphosphonates. Here I am, I am not having bisphosphonates, I am not going to take strontium ranelate, so I am by myself taking strontium citrate 680 mg in two tablets every morning, and later on calcium citrate, magnesium citrate, soft gel vitamin D3 and vitamin K.
it will be interesting to see what your GP says about CTX, but if it can be used to monitor those taking bisphosphonate drugs I cannot see why it cannot be used to monitor what is happening with the bones of those women with osteoporosis and not taking bisphosphonates.
I think your doctor should understand that bisphosphonates have serious side effects and that is a good enough reason for not taking them. I happen to think they do not work if all they do is stop new bone from forming and produce a build up of old brittle bone. Do not be afraid to fight your corner.
Enjoy your freedom from the busy time of going through cancer treatment and enjoy every day. Have a good holiday in September.
Fond thoughts.
Sylvia xxxx
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Hello Carolben,
I was so glad to hear from you and to know that you are soldiering on. Thank you for your very kind words about the thread. Such words are very encouraging and make it all worth while.
I do admire you for the way you are getting yourself through your chemotherapy treatment and I am glad to know that your medical team is proceeding with caution and that you had a lower dose of chemotherapy last week because your white blood cell count was low. Are you having injections to boost the white blood cell count?
I was glad to know that the lump in your groin turned out to be a cyst. I can understand the anxiety you must have had until you had that fine needle aspiration that produced good news and a sense of relief.
I was glad to know also that you are doing all the sensible things that we have to do when going through chemotherapy and your words are a good reminder to all newly diagnosed patients to heed carefully the advice they are given from their medical teams about what to do and what not to do during chemotherapy treatment. We all know that chemotherapy is a major part of the cancer journey and usually takes up about six months of the cancer journey and is the most challenging. Patients do need to avoid being in crowded places and do everything in their power not to pick up infections. I avoided supermarkets and busy town centres, not to mention doctors' surgeries and I did not have people with colds etc. anywhere near me. You cannot be too careful. I also made sure I got my flu injection and pneumonia injection as advised by the medical team. I was also told to avoid salads and seafood for the duration. I think this all paid off.
Hang on in there, Carolben, as these three sessions of Taxol will soon be behind you. Which day next week are you having your Taxol treatment? Count those days, just nineteen and then you can have some respite.
It looks as though you have the rest of the year mapped out. You will have your trip to Israel to which to look forward and then a family Christmas in Johannesburg. With some part time work also in your plans, chemotherapy better keep out of the way!
Take care of yourself and know that I am thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
It was nice to hear from you. You must be thrilled to have your sister coming for a visit, so I can understand you are busy, especially with three fund raisers in addition.
I have read about post traumatic stress syndrome and can understand how patients who have a diagnosis of cancer can suffer from it. I am no expert but of course the mind and body are intricately woven and I would think that the one will affect the other. When we are stressed we produce the stress hormone cortisol and my understanding is that this is very bad for us. I clearly remember my visit to the GP to get the lump in my right breast checked out and my GP saying that she was pretty sure it was breast cancer and would refer me to the hospital. I went into a stunned silence, even though I was expecting the diagnosis, and my inner body seemed to shake and my head ached. It was all shock going through my body just to hear the words and those words continued to reverberate in my head for a very long time. I think that you do have a great sense of loss of confidence after a cancer diagnosis and you pick up over time but never completely feel like your old self. In fact, knowing what we know about cancer and how it can pop back in your life any time, is it any wonder that we never completely recover. I shall try to do some more reading about PTSD.
Pop in when you can. You always have something interesting to say.
Thinking of you.
Sylvia xxxx
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Hello everyone,
I hope you have all had a good week and that those of you going through treatment are coping well.
I wanted to say a special hello to sweetheartinTN. I was so sorry to read that you had been diagnosed with TNBC at the young age of 27. I read that you were starting chemotherapy on July 10th and I was wondering how you are feeling. I do hope things are not too bad.
To LintRollerDerby, another young person of just 36, congratulations on being two years out from diagnosis.
To DanaMarie80, another young person at 32, just diagnosed with TNBC. I was wondering you are coping and how your treatment is going.
To two of my fellow Brits, scouser47 and Sinfullyd, I was wondering how things are going with you.
Best wishes to everyone.
Sylvia.
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Hello everyone,
With reference to the posting by linali recently I have just been reading up about Post Traumatic Stress Disorder and have found it all very interesting. The most clear cut and easy to read seems to be the link on breastcancer.org. You might want to have a read of it and post your comments or talk about the symptoms and recommendations for dealing with these symptoms. You may have some ideas and tips of your own. This seems to be one of the latest discussions as on Radio 4 this morning they were talking about the shock and trauma of a cancer diagnosis.
http://www.breastcancer.org/treatment/side_effects/stress_disorder
I also read a news item this morning on breastcancer.org about a new recommendation for post-menopausal women at high risk of breast cancer to take an aromatase inhibitor as a preventive for breast cancer. Apparently this is a new idea. High risk women cane already take Evista or tamoxifen as a preventive.
Of course we all know these will only be useful for preventing hormonal positive breast cancers.
My question is how does anyone know which type you will develop? You could do all this, with all the side effects and end up with non-hormonal breast cancer!
Any comments are welcome. Please have a look at this news item.
Friday is here again. The heatwave continues here. I am sure we shall have a hosepipe ban soon.
I hope everyone has a good weekend.
Best wishes.
Sylvia.
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I got a new gynecologist whom I love. He thinks outside the box. He did the CA 125 test and I came out 17. Anything under 37 is good.
He also prescribed Metforim and I'm going to start with 500 mg. once a dayand work up to the clinical trial dose of 850 mg two times a day. He will be monitoring my liver functions(which he tested right away) and is having me watch for muscle pain as there is a risk of lactic acidosis.
Fingers crossed that this drug will help prevent recurrence along with the diet and exercise.
The best things about the new gyn aside from his open-mindedness was his humility and humanness, and warmth and sense of humor. I feel lucky to have found him!
Peggy0 -
Hey Sylvia, didn't have any injections for wbc, Neupogen. I had 2 last year with the rough AC chemo. They did them in my belly and I don't remember having any bad reaction to them. My count is not low enough to warrant the injections, which is good, just that it fell quite drastically after the first 2 chemos of the last round. I'm sure that after this week's rest from chemo they will back up again.
I go for chemo on Tuesday mornings - that's right - 18 days and it'll be done - wow, that's not long!! Thanks for pointing that out, Sylvia!
I read the bc.org article on PTSD, which was interesting. I've always said that chemo brain starts when you hear the words "It's malignant" or "it's spread". It's the total shock. I was diagnosed 14 months ago and my whole life changed in that instant. Part of my brain seemed to shut down and my head has not been right since. I would wake up each morning after I was told it had spread, look out of the window to see if the sun is shining and this voice in my head would yell "you've got cancer!" Great way to start the day.... That doesn't happen anymore, for which I'm so grateful. I do find I'm still a bit fixated by the whole cancer story - it's kinda the focus of my attention right now?
What has helped me is that I've not been sick from the cancer per se - the treatment has almost taken me out at times, and once the treatment is done, the body gets better and stronger again. I keep telling myself this, I'm lucky to be asymptomatic right now, so it's just the chemo making me sick. I can handle that a lot better because I know the chemo is finite.
Been watching The Ashes and they've been talking about the heatwave you are having there - I love the heat, but it can take it out of you. We've had an easy winter so far - little rain, a few cold days, and lots of sunny ones, and even a small 3 day heatwave where the temps went up to 28 Celcius, which was a bonus!
Peggy, so pleased you found a gynae you connect with and trust - it's so important to have that kind of relationship with our doctors, and doesn't always happen. Good luck with the Metformin, there has been a bit written about it lately, hope it will help. What is a CA125 test? I'm happy you got a good result from it in any case.
Have a lovely weekend all
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Carolben, as I understand it, the CA 125 is a blood marker for ovarian cancer and may give some clue as to whether BC related tumors are growing as well. I wanted to have a baseline number soon after treatment as I'm too old for insurance to pay for BRAC testing. I had a 17 score and they only get concerned if it's over 34. Onc doesn't believe it helps (nor does breast surgeon). they say by the time test shows problems you're already symptomatic. So went to gyn, whose wife has had BC.
Thanks for your comments.
Glad that it's the chemo and not the cancer that's making you feel sick. Chemo is finite although when I was having it it felt like forever. Now a hazy memory that I hope will happen for you soon.
What are The Ashes? Available in US?
Hugs,
Peggy0
