Calling all triple negative breast cancer patients in the UK
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Hi there,
To be absolutely honest I was so ill throughout I think the chemo was Docetaxel and was supposed to have 6 sessions but as I said was so ill that my body only managed 4 and yes I did have radiotherapy over a period of three weeks , every day. This didn't bother me at all. From the chemo I have peripheral neuropathy, parden my spelling! Very difficult to talk with family and especially my lovely husband , he is wonderful but head stuck in sand (so to speak) and never mentions the C word. My children have been very siupportive but as you say, think once treatment is finished that's it! Never mention it again. As though it never happened. I am not the sort of person who likes discussing things with strangers. So keep very much to myself. Only problem is that every little niggle of pain sends me into panic mode. Has it come back? I only have mammo every 12 months?
Regards Dinwidx
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Hello Dinwidx,
I was interested to read that you have peripheral neuropathy as a result of your chemotherapy. I have that as well and it is the one lasting side effect from chemotherapy, which, on the whole, I got straight through with just fatigue. I know from my oncologist that peripheral neuropathy is a side effect of the Taxane group of chemotherapy drugs, either docetaxel (Taxotere) or paclitaxel (Taxol). I asked my GP about the strange feelings in my feet and she said it was peripheral neuropathy and there was no treatment for it and no cure. I also went to see a podiatrist some years ago and she in fact tested me for it and said it was definitely peripheral neuropathy, and that there was nothing to be done. Last year I saw a different podiatrist and she said the same thing. Have you been told anything can be done about it and how would you describe the feeling? I know that diabetics suffer from neuropathy in the feet and I wonder whether this is the same?
I think all the women that have gone through breast cancer treatment say that the months of chemotherapy is the worst and they describe a whole load of side effects. We all suffer from hair loss but others have sickness, vomiting, diarrhoea, constipation, headaches, redness in the hands and, of course, some have neutropenia. It is all very individual.
On the whole it is probably not of much use to talk to family members about cancer because, if they have not been through it they cannot understand. It is much better to join a thread like this, or join a local support group or go for counselling. I think you have to decide what suits you best. What you do not want to do is bottle up all your feelings.
I think family members and friends are probably very frightened when they have to experience a loved one going through cancer treatment. It is a very difficult time for them and some may choose silence as a way of getting through it. It is always difficult being on the opposite side of someone going through treatment. If you think of someone going through this disease and you have not been through it yourself, but watching from the outside, you will understand how difficult it is. I have watched family members going through this, both before and after my own diagnosis and I found it easier to deal with having been through it myself. I watched one of my older brothers slowly dying of cancer and I was really terrified.
I am sure your husband and children gave you the support you needed but now that you are through it they probably feel it is all done and dusted.
We all know on here that feeling of panic at any pain or unusual feeling in our bodies. Somehow we get through it, carry on normally and then start to feel panic and anxiety as check up time comes around. Then there is the enormous relief when we are told all is fine.
I was surprised that you have been having mammograms every twelve months. I have had them just every two years. How are your check ups going?
I think we all have to learn to live every day to the full. It will be ten years on June 20th since I was diagnosed and I have been having regular check ups with the oncologist and breast cancer surgeon since then. I had my final check up on May 1st this year, was told all was fine and that I could be discharged. It felt good to hear those words but I am now having to adjust to being on my own. You are not told you are cured, just to get back to your GP if you have concerns and then through the GP back to the oncologist.
I do wish you all the very best and I hope that cancer will sink into a dark corner for you. What are you doing this summer? Are you in the UK?
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
I have suffered from peripheral neuropathy and a couple of months ago I decided to see if there are any natural remedies. I discovered Alpha Liposuction acid and B-100 complex and do far so good. Both are available from Holland and Barrett. See: http://www.nhs.uk/Conditions/Peripheral-neuropathy...
Michael
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Hello Michael,
Thank you for that information and the link. I was most interested to know that you said you have suffered from peripheral neuropathy. How long have you had this for and do you feel you are getting any benefits from the supplements you are taking? I noticed you have written alpha Liposuction, but i think you mean Alpha Lipoic acid. Do you think these supplements are helping?
I have been taking vitamin B 50 supplements for some time for general health, but I shall get some B 100 today. I shall have a look for the Alpha Lipoic acid as well.
It is a nice sunny morning here in Exmouth but there is a cold nip in the air.
I have just been listening to the news on Radio 4 and AM. There is so much that is depressing. I cannot believe all the greed and corruption. I have just heard that a locum doctor, one of the highest paid, was paid £470,000 last year! This is atrocious. There seems to be greed and corruption everywhere.
It looks as though we are going to get stitched up over the referendum on the EU.
I was most dismayed about the news on corruption within charities and those running them taking the donations for themselves, not to mention the news about charities such as Oxfam pressuring the elderly to give donations.
What do people want all this money for?
Do you have any news to make me feel better about the human race!?
Wishing you all the very best.
Sylvia
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Hi Sylvia
God save me from predictive text and spell checkers. I dare not tell you some off the messes they have got me into. Yes I meant alpha lipoic acid. I have had pn for about four years and I do think the vitamins are helping.
I don't know anything about the corruption you mention. I tend to follow Irish news, so on the whole, I am pretty out of touch with day to day stuff in the UK. I Will watch the six news tonight.
I remember my mum telling me that when she was about 80 that a woman called at the door collecting for Help the aged and my Mum got angry with her and told her that she should be giving her money not the other way around 😃
Michael
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Hi Sylvia,
Yes live in the Uk, Derbyshire to be exact. Was treated at the Christie in Manchester and was told that mammogram every year for 5 years is the norm. The neuropathy is in hands and feet and was prescribed Amitriptyline for the pain. I also have to spray my mouth with artificial salivia as my salivia grands were also affected.Yes, I do understand about family, the problem with mine is that none of my family has had cancer of any kind, thats including sisters , brothers etc. My eldest sister is now 84 and fit as a fiddle!! So I think the shock has been greater for my children to understand, they are all wonderful including husband and I suppose I am lucky to have such wonderful people fighting my corner , so to speak. Not made any plans regarding holidays as yet. I think we will be staying in the UK this year. Usually go abroad for a week or two but can't cope with the airport, waiting around etc. I have just got new job in local hospital, receptionist. Fours hours a day, haven't started yet as waiting for CRB check to come through. Looking forward to that and I am sure that when I do start I wont have time to sit and mope!!! It's just nice to pop on here and express my feelings with other people who understand . Just writing this has made me feel better!!
Regards Dimwidx
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Enjoy!
Sylvia
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Hi Sylvia / everyone
Hope you all doing great and enjoying this bit of sunshine . Sylvia the flowers are beautiful .
I got the results from lump biopsy today. They are fat necrosis thank goodness . I am due to start rads on 22nd of June for 3 weeks. Is anyone else going through rads at the mo ?
Congrats on getting a new job dimwid. Four hours is just nice . I was working 8.30 til 5 I'm hoping to cut my hours a bit when I go back .
Xxxx Amanda
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Hello Michael,
Thank you for your post. I do understand about the predictive text and how the computer jumps to conclusions about the words you are going to use. As for the spell checkers, it gets a bit problematic as for a lot of words we have American and English spellings. On our computer we have opted for the English dictionary.
Yesterday I bought the B-100 complex and I shall try them. Naturally each part of the B vitamin complex has much bigger doses here compared to a bottle of normal B complex supplements. As for the Alpha Lipoic Acid, I did buy a bottle. I discovered that you could get it for about half price if you bought the monthly health magazine for women, produced by Holland and Barrett. It had a voucher in it. In fact the magazine has quite a lot of good deals.
I am thinking of returning the bottle of Alpha Lipoic Acid to the store because having read the label I see that the first ingredient is maltodextrin, which is an artificial sweetener and has a high glycemic index, just like high fructose corn syrup, which seems to be everywhere in processed food and one of the reasons people are putting on so much weight. It does say on the label that you should consult your doctor if you have or had diabetes before taking this product, as it may enhance insulin activity and affect your blood glucose levels. I am not a diabetic, but having had breast cancer I avoid sugar or sugar substitutes like the plague.
http://fitnessfortravel.com/is-maltodextrin-bad-for-you/
http://en.wikipedia.org/wiki/Maltodextrin
I have looked up information about alpha lipoic acid and cannot find a specific link to treating chemotherapy induced peripheral neuropathy. Do you have any links? You might be interested in the following link that I have found and which lists research on drugs that may be useful, but they seem to be mainly for dealing with pain. I have no pain but just a feeling of numbness in the toes and soles of the feet and a feeling of roughness and stiffness.
http://www.neuropathy.org/site/News2?id=8563&news_iv_ctrl=1101
Since, apparently, over 40% of patients end up with PN it is a quite important side effect of chemotherapy. Apparently, not only do the taxanes cause it but also the platins.
I do hope you get to listen to some of the UK news information and I would be very interested in any news from Ireland. I hope that linali (Lindsay) in Ireland will be back with us soon and keep us up to date. She was going off the France so might still be there.
I did chuckle about what your eighty year old mum said to the person collecting for Help the Aged. We obviously need more people like your mum.
At the moment I am following the Labour leadership contest. We have Andy Burnham, Yvette Cooper, Liz Kendall, Mary Creagh and Jeremy Corbyn. I have ruled out the first three here, the first two are too much associated with the past and the Blairites, Liz Kendall is not for me. It remains to be seen how the other two do. First and foremost Labour needs to decide whether it is a democratic socialist party or Tory-light like Blair.
Wishing you all the best.
Sylvia
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Hello Dimwidx and Amanda10,
Thank you for your posts. I am going to take a break and shall reply later on.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Just a quick reply. Here is the link where I found about Alpa Lipoic acid
http://www.drweil.com/drw/u/ART02717/Neuropathy.ht...
Coincidently just after I started taking it I was taking part in a nutrition study for the health agency and was visited by a nutritionist who told me that Alpha Lipoic acid was a good supplement to take.
On the B-100, do not be alarmed by any change of urine colour.
Michael
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Hello Dimwidx,
I was interested to know that you live in Derbyshire. It is not a part of the country that I know but I am told it has some beautiful scenery. I have a neighbour here who was born in Derbyshire.
I was also interested to know that you were treated at the Christie Hospital in Manchester, as it seems to have an excellent reputation.
It looks as though hospitals have variations in treatments as at the RD&E (Wonford) where I had my treatment. It was every three years unless there was a problem and then another one was given with an ultrasound as well. Now that I have been discharged I cannot go to the breast care unit at the hospital but have been told just to turn up at the mobile unit when it is in Exmouth. I do not think I shall be doing this as I was never really happy to be exposing my breasts to radiation. There is a lot of negative news about mammograms.
I was sorry to read that you have neuropathy in the hands and feet and that you have to take something for the pain. You are the first person that has mentioned that your saliva glands were also affected. I am not surprised at this because on the thread many women have mentioned problems with their mouth, such as ulceration and very dry mouth. This is because chemotherapy affects fast growing cells and this is why we have loss of hair from the head and elsewhere on the body. What do you have to spray in your mouth? Has the artificial saliva got a brand name? I know that you can get products for dry mouth to see you through chemotherapy. The products are Biotene. When I was first diagnosed they were not easy to find but I think they are now more readily available. I have seen them in Boots.
I can understand how difficult it must have been for your family to cope and understand your diagnosis of breast cancer when no other family members had been affected. That is quite lucky because the experts tell us that one in three of us will be affected by cancer during our lifetime.
I do hope you find somewhere nice in the UK to have a holiday. There are some beautiful places, but you can not depend on the weather.
I was interested to know that you had got a new job in a local hospital as a receptionist. I shall be very interested to know how you get on. I hope it is not too busy and hectic. As you say, it will take your mind off cancer.
I was glad to know that you feel better for writing on the thread. I think that being able to do this is an essential part of our cancer treatment and excellent therapy. At least on here you can say whatever you like and you know that we shall all understand.
There are two nice women on the thread from the north west. We have Suewirral and Jackpot (Gill). They have both been through a lot and if you look back over the posts you will find their stories. They have been quiet for while and I hope they are enjoying the summer months, but will soon come back to us. Gill and I like to find people that make us laugh. One of these is John Bishop and I know Gill is a great fan. The other is Karl Pilkington and it was through Gill that I got to know his programmes and watch them on the television. The first series was An Idiot Abroad, which was hilarious but profound. The latest one was The Moaning of Life, equally funny and equally profound. There is to be a second series of the Moaning of Life, so I shall look out for that.
Fond thoughts.
Sylvia xxxx
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Hello Amanda,
Thank you for your kind words about the flowers.
I was so glad to read that you had good news about the lump biopsy and that it turned out to be fat necrosis. It is so good to post news like this because we all know how much we worry about anything unusual that is found. Information like this is important because it helps others.
There is not long to go for your radiotherapy, so your cancer journey will soon be at an end.
I do not think we have anyone who is posting going through radiotherapy. Most of the posters have now finished there treatment but when this happens we usually get another group of newly diagnosed women starting to post. We have had lots in the past but may not get as many with so much information now readily available. I still think it is good to join a thread or a local group because you do need that social interaction and no one will understand a cancer patient more than another cancer patient. We did have a man named Tom (Breastcancerhusband) who posted a lot as his wife was going through breast cancer treatment. She was also expecting a baby. She had the baby and was going back on chemotherapy. I would think by now she would have had her radiotherapy as well. I hope all the family is well and happy and that Tom may get in touch with us sometime soon.
Please keep in touch and if you want any information about what to expect about radiotherapy let us know. You will get an appointment to have a the area to have the radiotherapy mapped out on your body and you will be put on a prototype of the real radiotherapy machine to do this.
It would be usful if you could post your details about your breast cancer below where you post. Have a look at mine to see what to do. It makes for easy reference when responding to posts and avoid mixing you up with someone else.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
Thank you for the link about neuropathy which I am going to read.
I was most interested to read that you had taken part in a nutrition study for the health agency and was visited by a nutritionist who told you that alpha lipoic acid was a good supplement to take. You do get involved in the most interesting things! Are you still doing polls?
Thank you for the warning about the B-100. I did know about this but it is good to be reminded, as I had forgotten about this.
Reading up about alpha lipoic acid I got the impression that the supplement was good as a pick me up after strenuous exercise.
I am off to try to do some reading in the lounge, but I bet as soon as I get settled, the phone will ring!
Keep well and keep in touch.
Best wishes.
Sylvia
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Hello Michael,
I thought you might be interested in the following links for sources of alpha lipoic acid.
http://www.webmd.com/vitamins-and-supplements/life...
http://healthyeating.sfgate.com/food-sources-alphalipoic-acid-1552.html
Best wishes.
Sylvia
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Hi All
Its been a while since my last post! Life has been quite manic with a new born and a toddler and of course a darling wife undergoing chemo!
I'm pleased to say that my wife has now finished chemo. She completed four rounds of FEC (3 weeks cycles) and 12 weekly rounds on Taxol with a 4 week break to give birth. She tested negative for mutations in BRCA 1 and has a variant in BRCA 2 that is not pathogenic and was not the cause of her cancer. So that's it. Treatment is over and done with, she will have a reconstruction at some stage, but for now the doctors consider her to be NED and she has made the transition from breast cancer patient to breast cancer survivor. God only knows what the future holds now, but we are going to take each day as it comes and try to put the fears out of our minds and enjoy our young family.
I personally want to thank everyone on these boards that has offered words of love and support. Its amazing how complete strangers in cyberspace have helped so much with their kinds words. I'm going to try and post when I can and keep you lovely ladies (and gents) up-to-date with the latest research and offer my own support where I can.
Having just watched my wife go through something at the age of 33 that I never imagined would happen has been hard, but she has got through this and so will those of you going through this now. Stay strong and don't let it beat you.
Lots and lots of love, hugs and prayers to you of all. My thoughts are with all of you.
Tom
xxxx
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Hello Tom,
I was so glad to see you back on the thread, as I have been concerned that we have not heard from you. Of course, I did understand that you were probably very busy with a newborn baby, a toddler and your wife going through chemotherapy. I was so glad to know that all was well with everybody.
It must be a huge relief to your wife to have chemotherapy behind her and to know that she is negative for BRCA1.
I was interested to know that she has a variant in BRCA2 that is not pathogenic and was not the cause of her breast cancer.
Congratulations to your wife and of course to you in getting through all of this and to your wife for going from cancer patient to cancer survivor. You must now try to put this behind you, look forward to life with your young family and live each day to the full.
Is there any reason why she was not given radiotherapy to finish the journey?
Thank you for your kind words to everybody here. It is good to know that we can all help and comfort one another. We all have to be a beacon of hope, shining out towards the future.
I do hope you will manage to stay with us and post when you can. It is such a gift to have someone like you on board with all the information that you can give us. It is good to have you and Michael on board with us, as two outstanding contributors.
I can imagine what a journey this has been for you with your young wife going through all this.
How is your project coming on?
Sending you and your family fond thoughts.
Sylvia
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Hi, Sylvia
I wanted to let you know I saw my breast cancer surgeon and the orthopedic doc. The BC surgeon looked at my small seroma and said it wasn't bad and I could either do nothing or she could go in and remove the fluid pocket and put in another drain tube for a while. She does not think it will reabsorb without that, as I was told at first. I think I will do nothing at this time, although it is uncomfortable at times. i asked her about the redness on my scar, and she agreed with the oncologist that it is not caused by cancer. Also like the oncologist, she doesn't know what causes it to get red and then fade. It seems to be paler in the morning and redder as the day goes on.
The orthopedic doc said I am a good candidate for spine surgery but I declined, it doesn't bother me enough to do that! He also said he could do an orthroscopic surgery on my rotator cuff, which is only partly torn, but he hesitates because after all the tumult of death and disease he thought the long recovery might be too much for me at this time. I agreed, and he suggested putting a steroid shot into the shoulder. I was hesitant, but then said okay with trepidation. They did warn me that the first couple of days would be a bit painful, just because of the shot itself. And they did not warn me how very painful the shot itself was, it was a bad little time span and a lot of bad words came out of my mouth! It's not too bad today, I will let you know more in a couple more days. The BC surgeon also asked if I would consider reconstruction on my breast, which would get rid of my fluid pocket while building a breast. If I were 20 or 30 years younger I would definitely think about it, but at this age of 62 I would rather be active as I can instead of having surgeries and recovering from them. Unless of course, they are absolutely medically necessary. Sometimes I think a lot of Medicine is a guessing game, we go for answers and there don't seem to be any without going to extraordinary measures.
Your flowers are beautiful! Thanks for posting them........our weather went from cool and rainy to very hot with nothing in between, it's almost shocking how hot it is so quickly. It is supposed to cool off with some rain this weekend. At least the farmers are getting to put up some hay while the sun shines.
Amanda, so glad your lump has turned out to be harmless. What a worry that must have been for you, it is just cruel sometimes. I did not do radiation, my onc doc thought I didn't need it. Then he retired, and the radiation doc studied my case and said maybe I should. Then he consulted some other docs and they decided it wasn't necessary in my case. I was having lots of arm and shoulder pain at the time and they said the risk of more distress outweighed any benefits. I will probably always wonder if I should have had it.
Tom, it's so good to see you back and to hear that your wife and baby are doing well. Wow, your baby had to go through a lot before birth, that's amazing.
Dimwidx, welcome to you. You are in a good place since you have that darn reason to be here that we all share. Looking forward to seeing more of you.
Sylvia, hope you and Raymond are doing very well and it isn't too hot and noisy at Exmouth.
Best wishes to all
Mary
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Hi Sylvia
Thanks!! It certainly has been an insane 9 months, but we're glad to come through it. She is obviously still very tired and her hair is yet to grow back, but she is feeling sharper, the chemo brain appears to have gone and there are signs of strength coming back. But as all ladies know so well its a long road back from chemo. Being young will help her though.
I'm obviously doing all the night time feeds and letting her sleep, which actually has been quite nice, I'm bonding really well with my son!
So the BRCA 2 variant was in the intronic part of the gene - basically genes have bits called exons and introns. The exons contain the bit that codes for the protein:
i.e. GCTGCTGAagtagctaGCATGTCATgcccgatgcagtgGGGGGGcccttGGGGGGG - the letters in bold are the exon sequence and the letters in lower case are the introns
When the cell wants to make a protein (i.e. BRCA2) it looks at the gene and take the exons out and joins them together to give the final DNA that the cells needs to read to make the protein. For my example above this would become:
GCTGCTGAGCATGTCATGGGGGGGGGGGGG - this is now the what we call the coding DNA (cDNA) and the cell reads that to make your protein.
If you have a mutation in an exon, when the protein is made it might end up not being made properly and hence causes problems.
My wife's mutation is in the introns (so on my example the lower case letter that don't form part of the final coding sequence). These can cause problems. They can affect how the cells cuts (or splices) the exons out of the whole gene. In my wife's case her variant causes a very slight variation in how the exons are cut out, but not enough to result in mutant protein being made.
Thankfully this means she is spared from having her other breast and ovaries removed. I will of course get my daughter and son sequenced.
The decision not to give radiotherapy: the doctor said that the benefit to her was too small to risk it. It would have been close to her heart and he also said that if the cancer does come back they would like to have it to use then. Interestingly she has been put at low risk of recurrence. According to the team, the fact she is lymph node negative, no vascular invasion, small tumor, highly circumscribed and the meduallary-like features give her a highly favorable chance. I just hope and pray that they are right. The thought of losing her these past 9 months has torn me to bits, don't want to go there again!
The research is going well. I am trying to shift more attention to breast cancer. Will keep everyone posted!
There is lots of new stuff out there though. Some data presented at the San Antonio Breast cancer symposium last December from a group In Germany showed amazing survival rates for triple negative patients. They were quoting three year survival rates of 100% for stage 1 and 93% for stage 2. One of the oncologist I have started working with thinks that the actual preparations of chemo drugs and the regimes are now so well optimized that TNBC is not the beast everyone thinks it is, indeed his comment was that its "aggressiveness is its downfall."
Lots of love to you and everyone else!
Tom
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Hi Again Sylvia,
The med I take for lack of saliva is called Benzydamine , take as a spray , as and when needed. Mostly in the morning as tongue is usually stuck to roof of mouth :-). I am interested to know what people on here take as supplements as I don't take anything . My taste buds have all but disappeared, so food is rather lacklustre and I only eat to keep up energy levels. My daily menu consists of toast for breakfast with coffee, maybe some strawberries with plain yoghurt for lunch and dinner can be anything from a plain salad to just a blueberry muffin!! Not very healthy I know, so that is the reason I am looking for ideas as to what supplements are good to keep up energy levels and also help in keeping this awful disease at bay. Do homeopathic remedies do any good?? Last time I had meeting with oncologist in February did ask this question but she looked at me as if I had two heads!!! Not very helpful :-( Dimwidx
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Hello Mary,
It was nice to hear from you.
Thank you for letting us know about what is going on with you. There is always something to think about. With regards to the small seroma, I can only say what I would do as we are not supposed to give advice. I would leave it alone.
I think the less messing around with anything after finishing standard breast cancer treatment is what I would want. I have left well alone after a mastectomy, chemotherapy and radiotherapy.
I was glad tl know that the redness on your scar is not caused by cancer, according to your breast cancer surgeon and oncologist. I still think, that if that were me, I would want to know why it is red, fades and then comes back. In a way it sounds a bit like the redness that can come and go in the hands after treatment, but I do not know if that applies to a scar line. It seems as though we have all sorts of little symptoms appearing from time to time after treatment. When I was going through chemotherapy my face used to get very flushed and then it would disappear. After treatment I did not have it any more, but, even now, the palms of my hands will sometimes go red.
I think you have made the right decision with your orthopaedic doctor. I have heard too many horror stories about post operative surgery on the spine. I know a few people who have ended up worse off after the surgery. As for arthroscopic surgery, my brother had that done on one of his knees and it was alright for a time but then he was in pain again. Before that, he had had a few steroid injections which also just worked for a time. I understand that these injections are painful, so I hope you get back to normal soon.
Your BC surgeon seems to be very keen to do some kind of surgery, but then that is how surgeons earn their living. I did not ask for reconstructive surgery and made it clear from the start that it was something I would never contemplate. Again, it is quite invasive to the body and I would be forever concerned about what it is stirring up, and it is a lengthy procedure, even more so if you have it done at the same time as a mastectomy. I needed a mastectomy, but even if I had been offered a lumpectomy I would have still wanted a mastectomy in order to feel more reassured that everything had been cleared.
I do agree with you that medicine is a bit of a guessing game. I read a long time ago that medicine is not an exact science and I do believe this to be the truth. I am rather wary of all doctors and tend to make my own informed consent over everything. My GP knows that she cannot talk me into anything. I do not take any medication. I see too many people who are on a cocktail of drugs and I do not think they are doing them any good. The no-no's for me are statins, bisphosphonates, steroids, metformin etc. etc. As my tag line says – Let your food be your medicine and your medicine be your food.
I was glad to know you enjoyed the flowers that I posted. The grounds around our apartment complex are quite extensive, so we have a good variety of plants.
Raymond and I are well and keep busy making sure everything is running smoothly in our apartment complex.
Keep well, keep optimistic and keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Tom,
I can really believe how insane everything must have been for you over the past nine months, but you have come through it and must now keep looking forward.
I can understand that your wife must be exhausted.
Hair does take sometime to grow back. Mine took quite a few months to get back to normal. I finished radiotherapy in July 2006 and was still wearing my wig at Christmas that year. I think it all depends how confident you feel about going around with very short hair. It will take time to get over tiredness and strengthen the immune system. There is no hurry.
I was very interested in your explanation about genes and exons and introns. All that lettering reminds me of a line that has gone wrong on the computer!
I understand, now, why your wife did not have radiotherapy. Because she is young, it is good to have something in reserve.
You and your wife must now look forward to a happy life with your young children and as time goes by cancer will go into the background.
I was glad to know that your research is going well and that you are trying to shift more attention to breast cancer. That will be very useful to all of us on the thread.
It is good news that survival rates are improving for triple negative. I have never really believed all the doom and gloom about triple negative. I think it was based on the fact that after standard treatment there was no preventive medication available, such as tamoxifen and the aromatase inhibitors such as Arimidex and Aromasin. I have always felt glad that I have had nothing like this to take. I have always felt positive about being negative!
I would love to know why triple negative breast cancer affects mostly younger women and why women are now getting cancer at a younger and younger age. I would also like to see more emphasis on prevention and less on more and more drugs. Chemotherapy is lethal and leaves lots of women debilitated and with lasting side effects.
In your statistics, you did not mention survival rates for stage 3. Are there any statistics for patients with stage 4? Some seem to live for a long time and others die fairly quickly. Do you have survival rates for hormonal breast cancer with and without HER2+? My friend and neighbour in her fifties had triple positive, from which she was in remission for a couple of years and then it came back and she died within a year. I think she must have had every drug available during that year and I think her body just packed up. She was slim, healthy and fit, but she still did not make it. Another woman, much younger, also HER2+, has survived for about eight years with stage 4. Again, she was fine for a while, even had a baby, and then it came back. Her little boy is now eight, but unfortunately she is now in a hospice and is in a very bad way. It shows that being triple positive is no guarantee.
I am wondering how Carolben is getting on. We have not heard from her sine the beginning of May. She went through her triple negative on this thread and was in the clear. The cancer then spread and she has been very unwell. I do hope she is managing to survive. Again, she was fit and healthy and took care of herself.
Take care, Tom, and have a good relaxing weekend.
Fond thoughts.
Sylvia
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Hello Dimwidx,
Thank you for that information about how you are treating the lack of saliva in your mouth. I do hope this will disappear as time goes on.
As for your interest in what people are taking as supplements, I do hope they will post to let you know. There is lots of information on this thread about supplements, nutrition and a healthy diet. You might want to look back at some of the posts. It is important to remember that it is more important to have a healthy diet than to take supplements. You need a balanced diet based on the Mediterranean diet or Chris Woollams' Rainbow diet. He has a book out with this title. You need to base your diet on a variety of bright coloured fruit and vegetables, organic if possible. In addition to these, oily fish, such as salmon, is recommended, along with nuts, seeds, pulses and beans. Nuts and seeds should be raw and unsalted. You should stay away from processed and refined foods as much as possible. These are white bread, white pasta and white rice. Eat instead whole foods such as wholemeal bread, wholemeal pasta and whole grain rice. Important fruit include berries, especially blueberries, and important vegetables include broccoli and all the green vegetables of the cabbage family. Stay away from dairy foods because of the growth hormones in them, and do not eat meat in excess for the same reason. Drink alcohol only in moderation.
This is the kind of daily nutrition that I have. In the morning I have some wholemeal toast with healthy peanut butter (no sugar), and a bowl of mixed berries (blueberries, raspberries, blackberries and strawberries). I vary these during the week and include grapes, cherries and kiwis. It is important to get a variety and to have mixed colours. I also have, stretched out through the morning, a glass of unsweetened, calcium enriched, vitamin enriched Alpro Almond milk, and sometimes the same with coconut milk. Sometimes I have soy, unsweetened and calcium enriched Tesco milk. I also include soy yoghurt, plain, calcium enriched, Tesco Free From yoghurt and alternate it with Sojade plain unsweetened soy organic yoghurt (live culture). I steer clear of all dairy products and meat. My main meal in the evening emphasises vegetables, cooked and uncooked.
I take some supplements but they are mainly ones to treat the osteoporosis that I developed during chemotherapy. I take Solgar Bone Support supplement, Solgar Vitamin D soft gel capsules and Dr Best Strontium supplements for strong bones. I do not take the things for osteoporosis that the medics recommend and that you can get on the NHS. They push bisphosphonates which I would not touch.
In addition to this, I just take a multivitamin and mineral supplement from Holland Barrett.
I do hope your taste buds will revert to normal. How long post treatment are you? I know that the taxanes (Taxol and Taxotere) can give a metallic taste but this should stop as soon as you stop taking them. If I were you I would try to get a more balanced mix of food during the day. You will find that a balanced diet will give you energy more than any supplements. Free range or organic eggs are supposed to be good for energy, so if that were me I would be having some eggs for breakfast with the toast or some nut butters. B vitamins are supposed to be good for giving energy, so a supplement might help initially.
As a anti cancer possibility, I have been eating bitter apricot kernels for ten years and drinking Clipper green tea, either decaffeinated, pure green tea bags, or leaf green tea.
I had to chuckle about your asking your oncologist about homoeopathic remedies. Orthodox medicine is not interested in anything other than orthodox treatment. I took homoeopathic remedies alongside all my breast cancer treatment. They were prescribed by Dr Elizabeth Thompson at the Royal Homoeopathic Hospital in Bristol, where I went regularly for five years from diagnosis. I was referred to her by my breast cancer surgeon in Exeter. All my treatment by Dr Thompson was referred back to my breast cancer surgeon so she knew exactly what I was doing. That surgeon referred patients to Bristol. I had homoeopathic treatment from diagnosis and at each stage of my standard treatment, surgery, chemotherapy and radiotherapy. The main thing had was oral Iscador for five years and everything was funded by the NHS. There is lots of information about all of this in my past posts.
That is about all for now. Have a good weekend.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia and everyone
I just want to share the great news that my mammography came clear.I know it's too soon to judge but I would like to enjoy the thought of having a full recovery .
I pray for all to send the happiest news on this and other threads while less and less people join .
Sylvia your flowers are so beautiful that I can feel their calm and peace even through their pictures .
Wish you all the best
Love
Hanieh
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Hebe, flowering evergreen.
Rhododendron, flowering evergreen.
Ceanothus, flowering evergreen.
Peace rose.
Best wishes to all.
Sylvia
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Hello Hanieh,
I was so glad to read your great news that your mammography was clear. I think we all understand that feeling of relief when everything is clear.
The thread is very quiet at the moment but I do hope people will post to share your good news.
You must always look on the bright side and tell yourself you will keep surviving.
We do not have many patients going through treatment at present but still plenty viewing. Triple negative breast cancer is so much more out in the open now and it could be that patients are more informed.
I am so glad that you enjoy the flowers that I post. I have posted a peace rose this time, which I really love and it is the first bloom of this year. I also love blue flowers, like the ceanothus. What kind of flowers do you have in Iran?
I am just five days away from June 20th, the day I was diagnosed ten years ago.
We all need to be here for Amanda, who starts radiotherapy on June 22nd.
Sending you best wishes.
Sylvia xxxx
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Hi Sylvia,Thank you very much for your informative reply. I have never been advised by any doctor/oncologist to eat organic foods/nuts/fruit etc.It will be 2 years this October since I finished treatment, so 20 months ago. I am definately going to try the bitter kernels you recommend and also try and keep to a good daily diet. According to the oncologist at my last visit , she more or less stated that the dry/no saliva was permanent as is the neuropathy!! I do drink lots of still water and chew gum as that seems to ease the effect. Only in the morning is it a real problem as tongue is usually stuck to roof of mouth and need to drink a large glass of water to release said tongue!! Off to replenish my larder with healthy alternatives.
Much thanks dimwid
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Oops, forgot to ask Sylvia. Where do you get your apricot kernels from.? According to one website one must only take 2 kernels per day. Is this correct? Regards Dimwidx
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hi Sylvia / everyone
So pleased your mammogram was clear Hanieh. Every scan is a worry for us all.
I love your flower photos Sylvia especially the rose it is beautiful . You definite have green fingers .
I've had my radiotherapy mapping and will start treatment next week. There is a trial at the hospital at the moment. It allows patients if they wish to be more involved in the treatment. Apparently I will put 3d specs on and be able to see the mapping etc and area to be treated. I thought it may be interesting so decided to give it a go.
Hope everyone else is doing ok and enjoying this lovely sunshine .
Amanda
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Found this really MOTIVATING fb page for us survivors....Follow it!
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