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Calling all triple negative breast cancer patients in the UK

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello everyone,

    here in the UK we are heading into another Bank Holiday weekend. This is the Spring Bank Holiday (what we used to call Whitsun). I see that in the US that it is a Federal Holiday – Memorial day.

    I hope you will find the time to post and tell us what you are doing.

    Sending best wishes to you all.

    Love.

    Sylvia xxxx

  • jags56
    jags56 Member Posts: 40

    Dear Sylvia

    Thank you for your sweet welcome.I am very impressed by the way you write and make others comfortable. Sylvia I am from New Delhi India.In June 2016 I got swelling under my left armpit.At first doctors just gave me some antibiotics but when there was no improvement they referred FNA test where it showed . Then this was followed by Pet scan and surgery.The stage is 2band the size of tumor is 4.2. one node is positive out of 34 removed. I had chemotherapy EC with three weeks gap and 12 taxol.I also had 28 radiation.All this started in June 2016 and finished in march 2017. It was a journey which could be completed with the help of my dear husband and my two daughters who supported me throughout.

    Here we have a close knit family.We all depend on each other.Iam not able to post my signature below due to some problem.I shall try to post it.Thankyou again for your kind support.



  • maryna8
    maryna8 Member Posts: 1,832

    HI, Jags66

    Welcome to you, glad you are here, and sorry you have a reason to be here. I'm glad you met Sylvia, as you can tell, she is very kind and knowledgable. This place has been a refuge for me for a few years now, and it saw me through some very dark days. None of us know what the future holds, but we all try to enjoy the present as well as we are able. It is the best feeling to talk to people who know how you feel.

    Are you feeling well now? I hope that you do. I feel the best when I am looking at new sights, but every bird has to land sometimes!

    I am glad you have a strong family that helped you through the process, I lost my husband 3 years ago and it's a different life when living alone.

    I'll talk to you again soon, Mary

    And it's great to have someone from India here!

  • jags56
    jags56 Member Posts: 40

    Hello Mary,

    It is good to hear from you. I have read some of your posts and have found out that you are very active on the thread and also helpful.

    Mary I am sorry about your husband. You are indeed a brave woman to live alone and fulfil all responsibilities by yourself. I salute you and your courage. Well now that I have finished my treatment I have to see the MO every three months. I have blood test, ultrasound and chest x-ray every six months and mammography every year. After treatment I have neuropathy in my feet and hands. I am not the same person as before . But now I have got used to it. During my chemo EC, Ihad very bad mouth sore and had lost my appetite and weight. Now I feel hungry and have put on weight.

    Mary the hospitals are full of patients of all ages .I don't know what is happening. I don't smoke drink or eat meat but still I got this disease, while there are so many people who take all this and still are ok. Talking about stress, who does not have stress. Even students face stress of examination ,unemployment etc. Will they get affected by it.About our lifestyle causing this disease.I don't think this can be the cause. How about small children who have yet not started their actual lives getting this disease. Well whatever the reason we should atleast have some cure without all the poison going in.Here there are many herbal doctors who think they have cure for it just for the sake of money. People go to them when they lose hope in every thing else.

    I am very happy to speak to you and find this thread very supportive. With best wishes

    Jags



  • LoveAndLight88
    LoveAndLight88 Member Posts: 70

    Is it normal to have strong pain under the right side of your rib, mum has been getting these waves of pain especially after she eats things like banana or low acid fruits.

    can't seem to find any info, might have to have her booked in for an ultra sound !

    x

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Sarah,

    I was sorry to read about your mother having some kind of pain. We are not doctors so we cannot really answer that.

    If it were me I would get it checked out. You could see the GP in case it is just indigestion, or contact the hospital and talk to your breast cancer nurse. It is better to take prompt action in case the pain is related to the chemotherapy etc.

    Take care.

    Love

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Jags56,

    I was interested to know that you are from New Delhi, India.

    Thank you for your details.

    I was surprised that you had had 34 lymph nodes removed with just one positive. What kind of surgery did you have?

    It is interesting that in India the same chemotherapy drugs are being used. It seems that the same drugs are being used worldwide. I also had EC, epirubicin and cyclophosphamide, every three weeks and then I had docetaxel (Taxotere) whereas you had paclitaxel (Taxol). They both belong to the taxane group of drugs. I had that every three weeks as well, but it looks as though you had weekly Taxol.

    It was good that you had help and support from your husband and daughters during what is a long journey.

    I do hope all is going well now.

    Best wishes.

    Sylvia xxxx

  • siddhivinayak
    siddhivinayak Member Posts: 45

    hello everyone...i have been here from almost 3 years but haven't posted here.I have been posting in several different forums.All these 3 years weren't easy at all.I had very big fears of life in all these years.

    Let me introduce myself.I am 42 years old and I am from Chandigarh,INDIA. I was diagnosed with TNBC IDC,3cm and 8/24 lymph nodes affected.

    I had lumpectomy then 8 cycles of chemo 4×FEC+4×Docetaxol.Then 30 rounds of radiation.After going through all this i am here.I have found this Community very helpful.I have been going through this with the help of all the BCO sisters.Thankyou

    Sid-

  • Valstim52
    Valstim52 Member Posts: 833

    Hello All

    So many pages to read for catch up. I’m doing well. My mobility is getting better. Been busy gardening, taking short trips etc. going on an Alaska cruise in August. We are avid cruisers. We were last on an Alaska cruise 10 years ago. I have some anxiety about the long gangway walk. I feel after we board the walking is selective and shorter. I’m building stamina now. I don’t want a scooter or cane, but will take either/or if necessary.

    My MO and I discussed how Xeloda is now standard after surgery for stage 2 and above TN in some cases.

    I have mixed feelings on this discussion.

    I wanted no more chemicals after my rounds of chemo. After rads, I felt so depleted, I personally felt in my case, the bad would outweigh a small percentage of good.

    I’m happy there are additional options becoming available for TN, but I worry about the future long term issues with’New’ protocols. Oddly my MO agreed.

    Val

  • honeytagh
    honeytagh Member Posts: 447

    Hello Sylvia, Mary, Sara, adagio and all

    Happy to see this thread so busy. It's so informative and friendly. There are some new members here that I would like to welcome. It took me half an hour to study these several posts.

    Sylvia, I m trying to get on with my life as much as possible. I should try to put cancer behind to move foreward which is not very easy. In two weeks I will have my first meeting with my oncologist post treatment. I'm not sure what his procedure for checkups would be. But I want to be less stressed than what I used to be previously. Life has its ups and downs and now after all these I would like to wish for better days. Things are not good in our country and people are suffering the increasing inflation. There are protests every where and a lot of people are risking their lives by these protests. I'm worried about how our children's lives would be with this brutal political system in which a small minority are ruling over the lives of millions and exploiting them. Life is never fair.

    Mary, so happy to see all your pictures. It must have been an amazing trip. The only thing that gives me true pleasure is travelling to different parts of the world. Now I can not do that because of all the treatment gifts.

    Sara, I hope things get better and better with your mom and you never see her sick again. I'm always happy that my mom is in good health as seeing her and my dad fine is a great blessing in my life.

    Cocooncat, my doctor believes reducing stress is the most crucial factor in healing and that's why he wants me to reduce my working hours.

    Val, I m so happy you are getting better and that you are expecting a trip.

    Adagio, it's good to do lots of gardening. It's so healing. I wish I could get rid of apartment life where I could have a chance to do my own gardening. Here we have a nice man in our neighbours who does all the gardening.

    Best wishes to all here.

    Love

    Hanieh

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Sid, Val and Hanieh,

    First of all, Sid, welcome to our thread and you have another compatriot from India in Jags.

    Val, I was so pleased to see you back on the thread as you are an important part of what I call our established group. I shall sit down later on and give a more detailed response.

    Hanieh, I was so pleased to hear from you and, the same as for Val, I shall give a more detailed response later on. I fully understand all that you have said and feel that our world is becoming a very dangerous place.

    To the person who PMd me, thank you. I shall answer on the thread and tell you how I have lived my life since my diagnosis in 2005, which will be 13 years on June 20th this year.

    Thinking of everyone and hoping to see you all on the thread to send out your support, comfort and personal tips to newcomers and all those who need us.

    Best wishes

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Val,

    I was glad to read that your mobility is getting better and that you are keeping busy with gardening and going on breaks of short trips.

    You must be looking forward to your trip to Alaska in August and you obviously enjoy cruises as your holidays. I am sure everything will go fine for you as you seem to have great determination.

    I was interested in what you said about your medical oncologist with reference to Xeloda for stage 2 and above after surgery for some cases of TNBC. I can understand that you have mixed feelings about this.

    I am just wondering what the purpose of this would be. It seems to me that more and more chemotherapy drugs are being put forward and this worries me, as these are very toxic drugs and do undermine the body. I have always been very positive about having been diagnosed with triple negative and was so glad that after the standard treatment of chemotherapy, surgery and radiotherapy, I was finished with treatment, except for the usual physical check ups, first of all three monthly, then six monthly and then yearly. I was glad not to be hormonal and not to have to go on tamoxifen and/or aromatase inhibitors such as Arimidex, for years, and with all their nasty side effects. I set about getting my body back to normal and hoping for the best.

    When I was going through treatment in 2005/6 the taxane drugs were relatively new and before that it seemed to be a regimen of AC or EC depending on which country you were in. AC was doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan). EC was epirubicin (Ellence) and cyclophosphamide (Cytoxan). These are the older groups of chemotherapy drugs, along with methotrexate (Maxtrex or Metoject) and fluorouracil (5FC).

    To these drugs have now been added the taxane drugs, paclitaxel (Taxol) and docetaxel (Taxotere). These drugs seem to have very bad side effects and I know from my oncologist that they cause neuropathy in the hands and feet and I have since read that they cause lymphoedema.

    To all of these drugs they have now added platins, carboplatin and cisplatin.

    Lately I have been hearing about Xeloda. I do not know too much about this except that it is the brand name for capecitabine. From my reading I know that it belongs to the group of chemotherapy drugs known as antimetabolites and that it is in the same group as fluorouracil and methotrexate. Do you know much about it?

    I can understand that you wanted no more chemicals after your rounds of chemotherapy and then radiotherapy. I think sometimes patients find that radiotherapy seems easier because it is over quite quickly. It is, nevertheless, just as toxic.

    I do wish all the negative publicity about breast cancer with triple negative receptors would stop and that patients would stop frightening themselves by looking on the internet. Frightening yourself serves no purpose, except to cause stress, which is something you absolutely do not need.

    I think we should all be a bit sceptical about filling our bodies with more and more drugs. We all have to make our own decisions.

    That is about all for now. Please keep in touch and take care of yourself.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh,

    It is lovely to hear from you and many thanks for your kind words about the thread. It is good that you caught up with the past posts as this makes sure that you get all new information and become familiar with new people.

    I know you will do all that you can to get on with your life and not give too many thoughts to cancer. You have come this far and you will go further.

    I do hope all will go well when you have your first check up appointment with your oncologist. I know it is difficult, but try to go relaxed. Here these check ups were physical ones to make sure everything was smooth across the chest where surgery had been performed, that there were no lumps in a good breast if one still remained, and feeling under the arms and around the neck to make sure everything seemed normal with the lymph nodes. There were regular appointments made for mammograms or ultrasounds if it was felt necessary. It would be of interest to me and the group if you have anything different to this in Tehran.

    I did not have any CT scans or bone nuclide scans other than those I had before and after treatment.

    I had one DEXA scan which revealed that I had osteoporosis, caused by the cancer treatment but also from an overactive parathyroid gland.

    I would recommend all women to have these DEXA scans and if they have high calcium levels in the blood, to get that checked out to see if it is due to parathyroid problems or something else.

    I do keep up with the news a lot, so I do know a little, only what we are told, about what is happening in your country. I do not agree with putting sanctions on countries, because that affects only ordinary people and not those that are calling the shots. I know that lots of people, in different countries, are worried about the future of their children. There seems to be no end to worry for ordinary people. Here in the UK we are in a mess, because the government is messing around with Brexit and is not carrying out the result of a referendum that we had almost two years ago. I know that relatives with young children worry about them.

    You are certainly right that life is not fair.

    Keep happy, Hanieh, enjoy your days with your husband, daughter, parents and other relatives. Live one day at a time.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Sid,

    Welcome to our thread. Thank you for all the details about your treatment. I was glad to read that you had got through all this.

    I was also glad to read that you had found bc.org very helpful.

    How has life been for you post treatment? How have you been doing when you have had check ups? How are you feeling now? What are your thoughts on your cancer journey?

    Best wishes.

    Sylvia xxxx

  • maryna8
    maryna8 Member Posts: 1,832

    HI, Sarah

    I'm not advising either on your mother's under-rib pain, however, some years ago I had a liver condition that has since cleared up. I learned a bit about my anatomy through that. Under the ribs is the liver and gallbladder, and slightly below and toward the center is the pancreas. Below that is a lot of duodenum and colon. Dull pain there can be due to many things, and one of them is simply as Sylvia said, stomach upset or even constipation. I would ask the doc about it and go from there. I also learned that the liver itself has no feelings, but it is in a sack and if it becomes enlarged it will press on the sack and cause a dull ache.

    Hope your mum is doing well today!

    Love, Mary

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello CocoonCat,

    Thank you for your post. I am out of time but shall respond as soon as I can.

    To the lady who PMd me, I have not forgotten you and will answer on the thread.

    Best wishes to both of you.

    Sylvia xxxx

  • maryna8
    maryna8 Member Posts: 1,832

    Hi, Siddhivinayak

    Hope I got the name right! Welcome to you, I hope all is well with you now.

    You have been through a lot as have all of us here and we know how you feel, though we all have our different stories. I'm glad you find comfort here, as I do.

    Does it seem to you as if many people you know have this disease? It seems so to me, and I wish we could learn where it is all coming from.

    I will talk to you again soon, Mary


  • SusieW5
    SusieW5 Member Posts: 345

    Sorry not to have been in for a while. I have had two 3-week cycles of chemo (FEC) now and am feeling very well so far. One more to go and then taxoterel for three cycles. I'm given injections to do at home for 8 days after each day in the unit which will help to keep my immune system strong. I think this is probably fairly new? It's the same drug that people with HIV take and it stimulates new white blood cells. I was catching up on your posts, Sylvia, and agree with something you said about not wanting to know too much. I read the list of side effects for the injections and wished I hadn't, but don't seem to have had any of them.

    Do people generally find taxoterel harder than FEC, or easier, or much the same?

    The hair is 90% gone and last week I bought a wig which I like so much that I intend to keep on wearing it after my hair grows back. Friends say it's taken years off me as it's my youthful red hair and not the grey-beige of recent years.

    I am getting out much as usual to theatre, cinema, art galleries etc and try to take a walk in one of the local parks regularly. I do have periods of serious yawning but don't feel lacking in energy so far. I know that it's early days.

    Does it sound weird if I say that I am finding the whole experience very interesting? Having been healthy all my life (63 next month), I thought I would be terrible at being properly ill but it turns out I'm not.

    Incidentally, I was horrified to learn on the very day of the Irish referendum that women who become pregnant during chemo there are taken off it until the child is born, even if that means their cancer has become terminal. The lack of humanity!

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello CocoonCat,

    Thank you for an interesting post and I am glad to know that I can be helpful.

    I can only say, again, that, if I were you, I would stay off the internet. It was not something that I used when I was diagnosed. I was not really that interested in computers and much preferred to get my information from books. At that time triple negative breast cancer as a term was not much used here in the UK. I was merely told that I had IDC breast cancer, that it was not hormonal, that tamoxifen was of no use and that therefore the prognosis was not good. I did my own research through a book entitled The Cancer Directory by Dr Rosie Daniel and went on from there.

    You have to forget about TN and just say that you have breast cancer, that it is not hormonal, but that you will get the same standard treatment of chemotherapy, surgery and radiotherapy. After that no nasty hormonal medications and that you are free to get yourself strong and healthy again after the toxic treatments and get on with your life. Learn to be positive about having negative receptors!

    I know how difficult it is to deal with a breast cancer diagnosis after being healthy for a long time. I had never really been ill until I was diagnosed with breast cancer not long before my 63rd birthday. Friends and family were all shocked and said they considered me the most unlikely person to get breast cancer. The word cancer haunted me in the beginning but I just learnt to get on with it.

    Please try not to get obsessed about lymph nodes. Any positive ones will be dealt with through chemotherapy, surgery and radiotherapy.

    I am not sure how many lymph nodes there are under the arms. The oncologist will probably be able to tell you. One of the ladies from India mentioned having had 34 removed. That seems a lot. I thought there was a way of telling how many lymph nodes were positive by doing a blue dye test, but perhaps that is no longer done. If I were you I would not go looking for statistics. You are not a statistic and I have read different opinions about whether node status makes a difference to long term survival. If I were you I would not fill my mind up with information that makes you worried and anxious.

    You must learn to take one day at a time. At the moment you are going through chemotherapy which is the longest and probably most difficult part of your breast cancer journey. Block out everything else and get yourself through this.

    You have finished AC so now concentrate on your Taxol and carboplatin and tell us how you get on and how you feel etc. The aim of chemotherapy is to shrink the tumour, but not necessarily to have it vanish completely. Concentrate on the fact that chemotherapy is systemic.

    I would be interested to know how you cope with carboplatin.

    We all experience that shock and fear on diagnosis and before we get settled itno treatment, but the chemotherapy keeps us busy and we somehow get along.

    I do hope you get good news from the BRCA1 and BRCA2 results.

    Like you, I was terrified about having surgery and of being in hospital. It was the worst part of my journey. I was fine all through neo-adjuvant chemotherapy, because my husband was with me and I knew I would be going home. I remember asking one of the nurses whether surgery was always necessary and she told me that it was. At that time I was in hospital for five days and I found it very long, but somehow I coped. Focus on the fact that you will be under anaesthetic while everything is being done and that, when you wake up it will all be over. There is no reason why you should not ask if your partner can stay with you the whole time.

    I am going to have to stop now but I shall continue tomorrow about pre-existing conditions and nutrition.

    Take care. Stop worrying and be positive.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello SusieW5,

    It was a lovely surprise to see you back on the thread. I shall answer your post tomorrow when I have more time.

    Love.

    Sylvia xxxx

  • marias
    marias Member Posts: 265

    Hello, how are all of you? I hope you are very well.

    I am getting better and better. I am very sorry not to be in contact as often as I would like.

    I went back to work again on first of May. in April I was on a trío on the Atlantic coast. Cartagena Santa Marta and in a beautiful place called Palomino at the foot of the Sierra Nevada mountain. Range of Santa Marta.

    I trust each one of you is better I'm improving I'm recovering my physical part was pretty damaged by inactivity for so long I have more strength in my arms in my legs I walk more than 6000 daily steps so I feel increasingly stronger I feel like traveling and I feel as if I have been released from a prison where I was to catch a lot of time and I will go to Europe from 14 June to August 28 So it's going to be a good trip I hope you are very well every day a hug.

    I'm 55 years Noe. My friend s do a sorprise party.


    image


    I had a follow-up mammogram and a shadow came out. Then I had an ultrasound. I still do not know what is to be observed for 4 months.
    So after being in exams and doctors I want to fly. forget that I am sick and travel know.




    image

    My bestia wishes to all of You

    Abrazos

    Marias



  • jags56
    jags56 Member Posts: 40

    Hello all,

    Sid it's nice to know you. Chandigarh is a beautiful city. Even I was scared first when I was diagnosed. But with help of family I am trying to move forward in life. Where did you have your treatment? Hope you are fine now.

    Hanieh I have read some of your posts and seen the photographs. You have a beautiful family and you look very sweet. You are right in saying that stress is not good. Being a teacher is not easy and requires hard work .l hope that with positive spirit you will be able to fight this disease and lead a normal and stress-free life with your family.

    Hello Cocooncat. Even I had a lump under my arm which was not painful but uncomfortable. At the beginning I took antibiotics but later found out it was cancer .During surgery they took out 34 nodes and only one was affected.Dont worry about the node involvement.Chemo will take care of that. After my surgery I did not ask the doctor many questions because I was ignorant and did not know much about the treatment. I took one day at a time and being ignorant I took my treatment without knowing how it was going to be done or what side effects I shall face. Now I am happy with my family and try not to think about it.I have my regular check ups and follow my doctor's instructions.

    Best wishes

    Jags





  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    What a lovely surprise to find a post from you this morning. I was so happy to hear from you and to hear all your news.

    It is wonderful that you are getting better and better. We have all been concerned about you.

    It must have been good for you to get back to work on May 1st, and it must have been a great holiday for you in April before returning to work.

    I can understand how you suffered physically from all your treatment and inactivity for such a long time. You are certainly doing a lot of walking and I am sure that you will be getting strength back in your arms and legs.

    I am sure we can all understand that feeling you have of being let out of prison. It is something that I definitely felt after treatment and the years of check ups.

    I do hope you will enjoy travelling and I am sure it will be very therapeutic for you. It sounds as though you are going to have a nice long stay in Europe. Where exactly are you going?

    Congratulations on your 55th birthday and thank you for the photographs.

    Keep up the good work.

    Abrazos.

    Sylvia xxxx

  • siddhivinayak
    siddhivinayak Member Posts: 45

    hello sylvia..The life has not been easy after the diagnosis.As i told you earlier i have been going through different fears in my life.Even slight pain anywhere in my body reminds me of cancer.But i am here thats a big gift to me from god.I want to see my children grow up.I have two little daughters 9 and 16 and a 22 year old son.My children are my strength.

    Hello Maryn8.Yeah you have got it right.Nice to meet you.Yeah all the BCO sisters were like a ray of light for me when i was diagnosed.I was feeling alone in that journey until i came here. Thank you all BCO sisters.

    Hello Jaggs.Chandigarh is really beautiful also known as CITY BEAUTIFUL.I got my whole treatment from PGIMER chandigarh.Staff is very helpful in this centre.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello CocoonCat,

    I was interested in what you said about pre-existing conditions. All we can do is think they may have contributed to the development of breast cancer and we can if we want research them seriously and get medical opinions. It is unlikely that any one thing causes it.

    There is research about an overactive parathyroid gland and a connection with breast cancer. I had no idea that I had an overactive parathyroid gland and probably might never have known if I had not developed breast cancer. My oncologist discovered that my blood calcium level was high and that can signal that cancer has spread, but my CAT scan and bone nuclide scan were clear in this respect. She decided to do a parathyroid hormone blood test (PTH) and that was very high and an overactive parathyroid gland was diagnosed. This often accompanied by high calcium levels in the blood. An overactive parathyroid gland leaches calcium from the bones and causes osteoporosis. The only solution and cure is surgery. I had a Sestamibi scan which showed a non-malignant adenoma on one of the four tiny parathyroid glands. I had surgery, and this was removed in 2009, when all my breast cancer was well behind me. Everything normalised after that. I discovered bc.org in 2009 by accident when searching for information about hyperparathyroidism and breast cancer. Research does not seem certain which comes first or whether there is a common factor causing both. My breast cancer consultant told me the parathyroid problem had preceded my breast cancer.

    I think if it were me I would be very curious to know whether the autoimmune conditions you have could be connected to the breast cancer.

    I am very open minded about a vegan diet and think it is probably very healthy, but we have to make up our own minds. For me I like to have some oily fish, wild salmon, a little wild haddock and some cold water prawns on the shell. I do not eat meat and base my daily nutrition on fruit and vegetables, organic where possible. I also have raw nuts, seeds and pulses and beans. This makes up the bulk of my diet. I have Alpro almond drink, unsweetened, and organic soy yoghurt with live culture. I also have prunes for iron. I steer clear of sugar, alcohol and dairy products. I do not eat masses of bread, but quite like olive bread. I also have organic eggs.

    Since diagnosis, nearly 13 years ago, I have drunk green tea and eaten bitter apricot kernels. I have no problem eating the kernels and usually have 10 a day with a mug of green tea. They can be ground if desired, but I eat them whole and find them easy to chew. I found out about them when I saw a nutritionist back in 2005. I have always eaten healthily.

    As for my own diagnosis of breast cancer, it could well have been the parathyroid problem but I think stress played a part as well. One cannot imagine what stress can be doing to the body. I am very good now at knowing when I am stressed and I try to deal with it.

    There are all sorts of risk factors, according to orthodox medicine, such as having your periods very early, having a late menopause, not having had any children, having the first child late in life, having close family relatives with breast cancer, and so on. You just have to go through all these and tick the boxes where relevant. I think being on the birth control pill is also a contributory factor.

    That is about all for now.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Brooke,

    To answer your question. I have not had any kind of scans since I finished the standard treatment of chemotherapy, surgery and radiotherapy. I had a CT scan and a bone nuclide scan before and after treatment and an ECG before and after chemotherapy.

    After treatment I just had physical check ups on a regular basis, starting every three months then six months and then yearly. I started by alternating between the oncologist and the breast cancer consultant. I was discharged from the breast cancer consultant after five years and from the oncologist after ten years. During that time I sometimes had a mammogram.

    I was very happy to be free form all of this in 2015.

    your oncologist is right to say that you have to live your life and look forward. With cancer there are no guarantees, whatever we do. We know the cancer can come back but we have live normally and do everything in our power to stay healthy. We need to eat healthy food, stay away from processed and junk food, and keep to a simple diet. We need to keep physically and mentally active and to avoid negative stress. A lot of the way we should be living is common sense.

    I hope this helps.

    Best wishes.

    Sylvia xxxx

  • marias
    marias Member Posts: 265

    Hello everyone.
    Silvia as you followed your arm I trust it has improved completely.
    My trip will be initially to Spain 14 days I will be in Madrid Seville and Granada.
    Then on June 28, my mother, my sister and nephews, picked me up in Oslo. and I will go with them and her husband to take a tour of Sweden and Norway.
    back to Colombia I will sell for Barcelona.
    So I trust everything goes well. and the film of hospitals and illness mixed with fun and recreation.
    tomorrow I have an appointment with the surgeon and the next with the doctor oncologist who gives me the chemotherapy. and in the first days of June with the gastroenterologist to review what happened to me in the vesicy and with the endocrine for the thyroid treatment.
    so I'm going to be somewhat entertaining ...
    a big hug
    Marias


  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Susie W5,

    I am sorry that I have not been able to get to you today, but I shall catch up with you as soon as I can.

    It has been a frustrating day today with the GP messing up my prescription for compression sleeves. It is now two weeks since I ordered them and tomorrow I have to start all over again and pick up a new prescription.

    I hope to have some quiet time tomorrow and catch up on the thread.

    I can say that it is difficult to say which chemotherapy drugs are easier to tolerate than others. We all react differently. I feel perhaps that the older drugs, what they call first generation, such as doxorubicin, epirubicin, cyclophosphomide, methotrexate and fluorouracil, may have been a bit easier, but others will disagree.

    I get concerned that new drugs keep getting added. People were surviving on thos original drugs, but when I went through my treatment taxanes were added. These cause neuropathy in the feet and hands. My oncologist told me this and that there was no cure.

    They also cause lymphoedema.

    In my case, they gave me a terrible taste in the mouth and caused my eyebrows and eyelashes to disappear.

    I have to end now but I shall try to write more tomorrow.

    Best wishes

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Marias,

    Thank you for your latest post. I shall reply tomorrow.

    Abrazos

    Sylvia xxxx

  • marias
    marias Member Posts: 265

    Hello!!

    During the time I was not connected I want to tell you that I was not swimming or walking doing Nordic walking.

    I was very tired all the time and could not for example raise a jar with water. I was so tired that I could not lift a pot with one hand or a dish with only one hand, everything touched me with both of my hands.

    I think the new treatment given to me by the thyroid with the Eutirox 150 mg for every day from Monday to Saturday and Sunday gives me 125 has improved my physical condition and also the mint.

    Abrazos

    marias

    Las fotos son en la sierra nevada de Santa Marta . Qué tal estas raíces

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