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Calling all triple negative breast cancer patients in the UK

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Comments

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Nancy,

    Thank you for your last post. Metformin seems to be in use for breast cancer prevention, as far as I know. I remember quite women on the threads were saying they were taking it.

    I do hope you will not have to wait too long for the results of your scans. Waiting is always an anxious time, but try to switch your mind off and just get on with enjoying life.

    Here in the UK I do not think that checking blood markers for cancer is standard practice. My oncologist certainly did not believe they served any purpose. They probably vary just like blood pressure.

    Take care.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    Thank you for the very colourful photographs. I do hope you are enjoying your holiday. I hope to hear from you soon.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Pam,

    Thank you for your post. It sounds as though you have been having a very busy time.

    I do hope you will have good news about the two bumps along your mastectomy scar.

    I often wonder as well whether we would be better off not knowing too much, as it just makes us anxious and stressed. We just need to know the details of our treatment plan and I think we may be going into too much information and asking about things that are too complicated for us and that we do not really understand or can misinterpret.

    I remember when I was first diagnosed that my breast cancer consultant was surprised and impressed when I wrote her a letter with all the questions about my treatment before I started it. She said most patients just wanted to get treated and did not want to know anything. I think that may have changed a bit now, but I am not sure.

    Congratulations on that weight loss. It is true that 14 pounds equals 1 stone. Nowadays most weight here is done in kilos.

    Where exactly are you going in Ireland and Scotland?

    Thinking of you. Have a good week.

    Love.

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 295

    Sylvia, hello. I was rereading your comment about my info and perhaps I can find a way to correct it. My excisional biopsy last July 14th turned into a lumpectomy. The surgeon hadn’t expected to find anything. So the DCIS and Tumour were found at that time, but I didn’t get results until August 16th, and it was September 8th that I was told of the TN status. I had my lymph node removal on September 13th, but didn’t get the final status on that until October 14th. When I finally got the call to go to see the radiation oncologist, they told me that I was almost too far out for just starting radiation therapy on November 20th, and I wonder if that is why the medical oncologist is redoing CT scans and adding CT scan of the brain. Still no date for the scans. The MO said to call her on the 14th if I don’t have a date by then. Guess it is just a waiting game

  • adagio
    adagio Member Posts: 713

    Pam - wishing you the best regarding the bumps on your incision line. Hoping the results are nothing to worry about. So glad to hear that you are going to Ireland and Scotland - you will have a grand time. We did the Wild West Coast of Ireland last year and it was fantastic - wonderful hiking, amazing scenery, wild winds, barren land, sheep everywhere and super narrow roads - a bit hair raising at times. I have been to Scotland once only in my youth and I do not remember much about it all - I went to Edinburgh.

    I was interested to read about Father Gregory Boyle and the work that he does with disadvantaged people - I think it takes a very special person to do that type of work.

    Congratulations on the weight loss - it must feel good to have clothes fit better. Losing weight takes a lot of discipline and it seems like you have lots of that.

    Have a great week.

  • adagio
    adagio Member Posts: 713

    Maryna - those flowers are stunning and you look fabulous. Hope you are having a fabulous time, and we look forward to a few more photos when you get the chance. Look after yourself.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Nancy,

    Thank you for your post. Thank you for all that information. You really have been through a difficult time since diagnosis.

    You had to wait far too long between each consultation and I think it is about the same here nowadays. Here in the UK I think the system is overloaded. Back in 2005 everything seemed straightforward. I was the one who delayed my treatment but when I consented everything went smoothly. I had my six months of chemotherapy and then three weeks later I had surgery and then not that long after I had my three weeks of radiotherapy. After that I had my regular check ups alternating between the breast cancer consultant and the oncologist. This was every three months for two years, and then every six months for a few more years. At five years I was discharged from visits with the breast cancer consultant but continued for five more years, once a year, with the oncologist and then was discharged.

    I had a CAT scan, a bone nuclide scan and an ECG before all my treatment and then at the end of it.

    I also had a few mammograms during that ten year period, but not more than three. After treatment I also had a DEXA scan and discovered I had developed osteoporosis.

    I had an excellent pathology report with no visible evidence of cancer (NED). I have been fine since, with no major problems.

    I do hope all will go well for you with these scans. Make sure you do call your MO on May 14th and that you can get your scans as soon as possible.

    I have been reading through some of the other threads and am appalled at the number of young women being diagnosed with TNBC and breast cancer in general. There is something very wrong. I am wondering what is causing this early appearance of breast cancer and wondering if the birth control pill is a factor. I know that it is a risk factor with breast cancer, according to what I have read.

    It is a Bank Holiday here this weekend and we are having a heat wave and setting records. It is supposed to be 28/29C today in certain places. Our weather seems to be so extreme now.

    Sending you best wishes.

    Love.

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 295

    Sylvia, thanks for sharing. I have read that TNBC is on the rise and have to wonder why. I do not fit the criteria; the only possibility would BRCA mutation and I don't know my mother's history. I wish there was something I could do to bring the markers down. Today I feel great, working outside, rearranging furniture. I do not feel like a sick person. I am wondering if the brain CT scan is worth taking the risk. Part of me just wants to say, let whatever happens happen. I would have thought the MO would want to wait a couple of months, then do more blood work. At the same time, this might be my only chance to get these scans, although the chest/abdomen/pelvic CT will be the second one in 6 1/2 months. Certainly, my GP wouldn' consider CA15-3 of 30 worth doing the scans. Firtunately, all the costs are covered. If I end up in chemo before we reach our Pharmacare deductible, we will likely have to pay for the chemo drugs. I hope it doesn’t come to that.

    Hope you are having a great day.

    Hugs.

  • honeytagh
    honeytagh Member Posts: 447

    Hello Sylvia, Mary,adagio, Pam, kath and Nancy

    Sylvia, your flowers are fantastic. Thank you for sharing them. I'm so happy you have been healthy all these years. I believe the choices you made, your life style and the diet you have taken have all helped in your complete recovery. Stay many more years healthy and happy.

    Mary, your pictures were also nice. The best part was the picture of you. You are lovely.

    adagio, your trip to New York seemed great. Travelling is always refreshing and rejuvenating.

    Nancy,Pam and kath I hope all your tests and scans be excellent and clear for ever and we always hear the good news of your health here.

    Today is my 12th out of 16 radiation therapy. Everything is good and I have regained my moods. At times I have some scares but listening to Dr.Bernie Siegel on YouTube, has helped me a lot.

    My hair is still growing slowly. But it's very enjoyable to watch .


    Wish all of us the best days to come.

  • 53nancy
    53nancy Member Posts: 295

    Honeytagh, nice to meet you. I hope the rest of your radiation course goes well, and that your side effects will be few. And I wish everyone a wonderful day

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Nancy,

    Thank you for your latest post. It is so nice getting to know you a bit better.

    As for the rise in TNBC, this is probably due to the number of young women being diagnosed, which I think must have gone up quite dramatically. When I was diagnosed at nearly 63, I was told that was quite rare and that it usually affected much younger women. When I asked about genetic testing for BRCA1 and BRCA2, I was granted an appointment with a genetic nurse and that appointment lasted about 45 minutes and I had to answer lots of questions. At the end of it she told me that it was very unlikely that I had these faulty genes and that she would not be referring me to a genetic consultant. At that time the cost for such a test was about £3,000, so I do not know whether the NHS was rationing the referrals. I did not fulfil the criteria for qualifying such as close family relatives with breast cancer. My mother did not have it I do not have any sisters. My maternal grandmother died at 75 of metastatic breast cancer, but that does not count. I have just three female cousins on my mother's side but I am the only one so far that has had breast cancer. What interested me was that those cousins are the children of my mother's brothers and I am the only female cousin that is on the female line going from grandmother to my mother to me.

    I think there is also more TNBC perhaps in older women who have had hormonal breast cancer and been put on long term tamoxifen to prevent recurrence. I have read a few times that with long term tamoxifen you can end up with TNBC.

    Try not to worry about those markers. Remember my oncologist told me they were meaningless and that she did not do them.

    I was glad to read that you are getting on with a normal life and that you do not feel like a sick person. I did not feel ill when I was diagnosed with breast cancer, did not feel ill during treatment and still feel good and normal all the time. I have been more fed up with the lymphoedema in my right arm and the saga of the mole removal.

    Is it possible for you to get a second opinion? A brain scan seems rather drastic and CT scans do expose a patient to radiation. I am not a doctor so it is hard to know what to say. It is interesting that your GP would not consider that CA15-3 of 30 worth doing scans. At the hospitals these days they seem to do all these scans without hesitation.

    I do hope you will not end up having to pay for chemotherapy drugs, because they are hugely expensive. What is the exact amount of the Pharmacare deductible? It is horrendous having to pay for chemotherapy drugs.

    Try not to worry and if you want more peace of mind do not hesitate to ask for a second opinion.

    My diary tells me that Monday May 21st is Victoria Day. I always enjoyed that day because it was the great planting day and I loved the gardens that I had during my days in Canada.

    I am just sorting out planting in the grounds in the apartment complex here. The weather is so up and down that it is problematic.

    That is all for today.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh,

    Thank you for your post and I am so pleased that you enjoyed the flowers. Thank you for your very kind words. Raymond and I both do our very best to stay as healthy and active as possible. We do believe that a healthy diet with a mixture of healthy food and staying mentally and physically active helps a lot.

    I am so glad that you are nearing the end of your radiotherapy. Will you have a celebration with your family and friends?

    It made me so happy to read that you are in an upbeat mood. I know from your posts that you have a good sense of humour and that you are a strong young woman.

    I know that going through treatment and living with all this takes a lot of strength and that there are ups and downs, but you can do this.

    I do not listen to Youtube but I would be interested to know what it is with Dr. Bernie Siegel that has helped you such a lot.

    I was glad to know your hair is still growing slowly and I know what you mean by saying it is enjoyable to watch. It will not be long before you have that healthy hair back again.

    Keep happy, Hanieh, and enjoy every day. What is happening with your teaching these days?

    That is all for now.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hola Marias,

    We all miss you on the thread and we do hope you are well and have finished all your treatment. if you get this message, please pop in.

    Abrazos

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 295

    Hello, Sylvia; thank you for your post. Here in Manitoba, they do not start mammograms on women who are under the age of 40. I did have one at 38 because I had found a lump, but I fought for months to get it, And I only managed it because my doctor was away and the one who was filling in made the appointment. It was not an area of concern. I have a niece who just turned 44 and her doctor does not think she needs a mammo. There is a history of breast cancer on her mother’s side and She told me she was going to fight for one this year. Getting another opinion would be very difficult, unless I was willing to travel to the US, and we simply cannot afford it. Neither can we afford alternative treatments. I consider myself very lucky that my MO is willing to do these tests. But I do believe this experience is in God’s hands and there is a purpose I do not understand. Even if it means death sooner rather than later, it might help someone else in their struggle.

  • lilyp6
    lilyp6 Member Posts: 130

    Hello Everyone,

    I am happy to say that my surgeon took the time to email me and let me know that the biopsy on mastectomy incision bumps showed that they are scar tissue. If she hadn't emailed me, I would have waited until Thursday to hear that, so I'm very grateful.

    Sylvia, thanks for your kind wishes. I am not surprised to hear that you were a very informed patient at the beginning, and throughout your treatment. On our trip, we will be based in Dublin and Edinburgh, but visiting other places as well. I'm going to try to keep it low key so we can actually get some rest, too. It has been a very busy time, with one more dentist appointment between me and our vacation time.

    Adagio, thanks so much for your good wishes. Your trip to Ireland sounded and looked wonderful. I'm sure we'll visit it more than once. If I had my way, we would spend a month or more in each place. That part of the world is like an antidote to the Southern California desert landscape.

    I'm glad to hear that you were interested in the work of Father Gregory Boyle. He's a fascinating man who is turning lives around, and I highly recommend his live appearances.

    Hanieh, it's so good to hear from you. Thank you too for the good thoughts. Hold on until you get to that number 16, and hold on to that good mood. You will start to feel better physically soon, and I'm so glad.

    Nancy, I recently had a scare with my CA 15-3 tests that amounted to nothing to worry about. I believe that several factors influenced my numbers, from shoulder injuries to heartburn. I concentrated on reducing my inflammation in every way that I could. I had also stopped taking CBD oil, and I started taking it again. I'm still not convinced that there is any value to the test. Now my numbers are fine, and I hope yours will be soon, too.

    Marias, I want to echo Sylvia and let you know that we wish you well and hope to hear from you when you are ready.

    Cheers,

    Pam

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Nancy,

    Thank you for your post. I suppose that all we can do is deal with the medical system in the best way that we know how. In the UK, with the NHS, I decided long ago that my body belongs to me and I shall make the decisions about it and accept the responsibility for any consequences.

    You mentioned mammograms. Routine mammograms start here at age 50 and end at age 70. They are not done before age 50 because the breasts of younger women are more dense. I would also think that if you started younger and ended at 70, having a mammogram every three years, that would be a lot of exposure to radiation.

    It seems that in your situation you will have to wait for the scans, have them and then wait for the results and hope for the best. I just wish you well.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Pam,

    I was glad to read that the bumps on the mastectomy incision are scar tissue. That is good news and means that you can go off on your holiday with peace of mind.

    I do hope you will have an enjoyable time in Ireland and Scotland and that you will be able to have a time of discovery and rest. You certainly lead a very busy life.

    It is good too that you will have your dental treatment behind you.

    Thinking of you and sending best wishes.

    Love.

    Sylvia xxxx

  • 53nancy
    53nancy Member Posts: 295

    Sylvia, my scans are booked for May 25th; wish it was sooner, but don't mind if the results come back quickly.


  • honeytagh
    honeytagh Member Posts: 447

    Hello Sylvia

    Thank you so much for all your kind words. I have started taking all that can help to protect my body such as tumeric with black pepper, ginger, flax seeds, propolis and lots of fresh fruit and vegetables. Also, I drink 2 to 4 glasses of warm water early in the morning one with fresh lemon juice. This is a Japanese way of detoxing the body. These are all I can do to help myself in addition to trying to stay calm and peaceful. Also, I try to be in more in parks to enjoy fresh weather and the beauty of the nature.

    Sylvia, today is my friend's last chemo session and after she gets better, I would like to celebrate the end of treatment together.

    Last week was teachers day here and my students did a lot. They are so sweet.

    Love

    Hanieh

  • honeytagh
    honeytagh Member Posts: 447

    Pam,

    You made my day. I'm so happy you are healthy and can have a joyous vacation. Stay healthy and happy for ever

  • honeytagh
    honeytagh Member Posts: 447

    image

    These are some recent pictures of me.

    P.S. I have gained weight but my doctor believes it's just because of taxtore and I will be back to my normal weight in a few months.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Nancy,

    That is good news about May 25th for your scans. The time will soon go round. Try to switch off and keep busy.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh,

    Thank you for your post. It seems that you are doing everything possible to help yourself.

    I think the glasses of warm water is an excellent idea and the lemon juice is good for detoxifying.

    Staying calm and peaceful will help your immune system and getting out in the parks will do you a lot of good.

    I think that is a very good idea you have to celebrate with your friend when she finishes her chemotherapy and you finish radiotherapy.

    What a good idea to have a teachers' day and I am sure your students showed their appreciation of you with great praise.

    Keep up all the good work and the mood of optimism.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello again, Hanieh,

    It is such a pleasure to look at all your lovely photographs. You all look very lovely in the one of you and your students. I do like the flowers. I like the photograph of you and your family and I must say your daughter looks quite the young lady.

    I saw that you mentioned that you had put on weight. Patients seem to either put on weight or loose weight. I have not heard of weight gain because of taking taxane drugs but the weight gain is often due to steroids and sometimes to being less active. Some patients loose weight and I would think this is due to not having much of an appetite and the stress and worry of the whole breast cancer journey. I was very lucky to stay my normal weight throughout. I do know that with hormonal breast cancer and going on tamoxifen or aromatase inhibitors, there are all sorts of problems and for tamoxifen weight gain seems to be a problem.

    I was wondering when your birthday is.

    Thinking of you.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello CocoonCat,

    Thank you for your post and for popping in to say hello. You will get a warm reception here as we all realise what you are going through from our own personal experiences.

    First of all you must tell yourself you are going to be fine and remain optimistic throughout. As someone who is approaching thirteen years since diagnosis, I have always remained positive about being negative. Do not believe all the scaremongering that goes on about being triple negative. You will get the same standard treatment as other breast cancer patients, that is surgery, chemotherapy and radiotherapy. After that is finished there are no drugs to take as those with hormonal breast cancer take, but I see that as a plus. Your immune system is free to build up again through healthy eating, physical and mental activity and a positive attitude. You can do this.

    I was wondering how much chemotherapy you have done so far on AC and whether you will then be having a taxane drug. How are you feeling so far? I do hope all is going well for you.

    Do not worry about having a positive node. You do not mention how many nodes were positive. The chemotherapy treatment should deal with all this.

    It is good that you are taking pleasure in small things and that plants are bringing you pleasure. Get out in the fresh air as much as you can.

    We all believe in healthy eating here and there are pages and pages of information about food and nutrition on this thread. We believe in the Rainbow/Mediterranean diet with plenty of fruit and vegetables, oily wild fish, extra virgin olive oil, nuts and seeds and keeping away from dairy products, especially cows' dairy. It is important to stay away from sugar, junk foods, processed foods and alcohol.

    You probably have your own ideas about all this and will do your best like the rest of us do.

    Thinking of you and sending best wishes.

    Sylvia xxxx

    ps During chemotherapy, keep well hydrated, get plenty of rest, be strong and keep looking forward.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello CocoonCat,

    Thank you for your interesting post. I was glad to know that you tolerated AC very well and I am sure that keeping very well hydrated helped with that. I was interested to know that you had had AC every fortnight instead of what was a standard every three weeks. Since you had the AC every fortnight, it was probably a lower dose and this seems to be better tolerated. I know that a lot of women on this thread have said that having a taxane drug, Taxol or Taxotere, was easier on them than having it every three weeks, which is what used to be done. I had six months of chemotherapy with every drug being every three weeks.

    I also drink plenty of green tea and have done so for nearly thirteen years now. I also have white tea from time to time. Most of the time I have decaffeinated green tea, although I do like the ordinary green tea and especially the leaf variety. Although green tea is low in caffeine, I seem to be sensitive to caffeine.

    As you say, AC is not that bad, except for hair loss.

    I do hope all goes well with your twelve doses of a Taxol/carboplatin combination. It seems now to be fairly routine to add carboplatin to the chemotherapy treatment. Before it was just Taxol or Taxotere. Do you know why it has been decided to add carboplatin. I know that carboplatin is the generic name for this group of drugs and it is often sold under the brand name Paraplatin.

    I think for newly-diagnosed patients, the names all get a bit confusing, as sometimes the generic name is used and sometimes it is the brand. I usually use the generic name because that is what my oncologist always used. For example, she would say docetaxel (brand name Taxotere) and paclitaxel (brand name Taxol).

    I can understand that you would not mind another round of AC because you have tolerated it so well, but the oncologists like to use different ones because they belong to different groups and probably act in a different way. For example, AC, which is doxorubicin and cyclophosphomide, belong to different groups. Doxorubicin (brand name Adriamycin) is known as a cytotoxic antibiotic and cyclophosphomide (brand name Cytoxan) is an alkylating drug. I am not sure how they all work differently, but the aim os to shrink the cancer.

    I do hope you will tolerate Taxol and carboplatin well. Just keep on drinking like you are doing, gentle exercise, looking forward and eating healthily.

    You should be told what the possible side effects of these drugs are and what can be done to minimise them. If you are not told, do not be afraid to ask. Forewarned is forearmed.

    I think patients are usually told how many positive nodes they have. I was told I had just one, which is known as the sentinel node. The breast cancer surgeon may remove some non-positive nodes just to make sure all is clear, for example my surgeon removed six non-positive ones. I think the fewer nodes you have removed the better it is for side effects, such as lymphoedema, which is a common side effect of surgery, chemotherapy (especially the taxanes) and radiotherapy.

    It sounds as though you are already making that effort to eat healthily. The Mediterranean/Rainbow diet is the one that probably gives the mosy balanced way of eating.

    I think you must have been reading about the importance of having a healthy gut. It is very much the topic of conversation these days. We have discussed it at great length here and anyone here following Chris Woollams of Cancer Active will have read a lot about it. Healthy bacteria is important. I eat a lot of plain, unsweetened yoghurt with live culture but I have soy yoghurt, Sojade organic. I do not touch any cows' dairy because I asked my breast cancer consultant about what she thought might be one of the causes of breast cancer, and she said dairy products because of the growth factors in them. It is important to get these heathy bacteria and you need a combination of probiotics and prebiotics.

    I know that a lot of those that have gone through this thread have found cutting out sugar quite difficult. It is probably easier to cut down gradually, but we do read that sugar feeds cancer and we need to cut it out of our diet. The trouble is that sugar is everywhere. You just have to do your best. As adagio from Canada says, if you can do 80/20 in your diet and leaving a little way open for 'forbidden' treats, that is not a bad achievement. I am lucky because I do not like anything sweet.

    It is frustrating when you are feeling healthy, fit, happy and not stressed, to get a diagnosis of breast cancer, but it seems to happen to a lot of us. I was told I should not have breast cancer, given that I was healthy and slim, but I had it.

    I do feel concerned that so many young women seem to be getting breast cancer and especially with triple negative receptors. Do you know what kind of breast cancer you have? The most common is invasive ductal carcinoma (IDC).

    That is about all for now. Take care and have a good weekend.

    Best wishes.

    Sylvia xxxx

  • LoveAndLight88
    LoveAndLight88 Member Posts: 70

    Hello Everyone !

    How are you all doing ! I hope you are all happy and doing well.

    Im so sorry for not being as active as I was, my grandfather passed away and was helping mum get through that, my brother then had to leave for work which left me to take care of mum and dad so its just been a little overwhelming ! Haven't forgotten any of you, my mother constantly asks me how the lovely ladies of BC org are doing. Pretty sure she scolded me for not logging in enough.

    Sylvia, I read that you had a rash, I'm very happy that cleared up for you! How are you doing with the Lymphedema? My mother has been experiencing alot of swelling in her upper left arm where they removed lymphs during her lumpectomy, her onco recommended physio. Its still bothering her though, i hope yours has settled !

    Hanieh, Im SO happy you finished chemo and you are nearly done with radiotherapy. You have powered through this journey like a trooper and i cannot be anymore happier for you. Hair will grow back once all these treatments are over. The important thing you are healthy !

    Pam, I was thrilled to read that the bumps were only scar tissues! I can't imagine the anxiety of constantly having to wait for news. Now you can look forward to your well deserved vacation !

    Mum has 7 taxols done now, she was supposed to have 12 treatments but her onco is happy for her to only do 10 as she's experiencing too much joint and teeth pain. Her onco explains this won't effect the effectiveness of the treatment plan as 9 is normally the recommended dosage. However she feels that mothers side effects are not settling so she's happy for her to 10. fingers crossed shel be done in 3 weeks.

    She has found taxol very daunting and harder than EC. I see that her temper flares so much on taxol, she constantly has joint and bone pain, but all in all she's ok, she gets out more and is more awake... As for me i felt EC was harder on her because she was constantly fatigued, in and out of hospital, chemo crashing all the time.

    Her onco lowered her steroids by half the dosage in her pre meds, thats made a significant ( good ) impact on her also. She was prescribed vitamin b6 supplements to help with her joint paint which helped her tremendously.

    She has lost 95% of her hair and lashes however she still has bit of her eyebrows left. We've just had to get creative with turbans and scarves which look lovely i might say.

    On week 5 of chemo - her doctor did not give her the taxol treatment as her liver enzymes were very high, so they gave her the week off so the body recoups. Apparently its one of the side effects of taxol.

    All in all she is doing ok and powering through. She sends everyone her love and thinks of you all !

    Also- Mum FINALLY did the genetic BRCA blood test. She was extremely hesitant to do it, Its made me incredibly anxious also, but lets pray its negative. We get the results back in 4-5 weeks.

    Hope everyone has wonderful Monday.

    Kindest,

    Sarah x


  • kathseward
    kathseward Member Posts: 380

    Hanieh you look beautiful! You are such a gentle soul! You have done this journey so well

  • honeytagh
    honeytagh Member Posts: 447

    Hello Sylvia, Mary, Sara,Kath and all

    Yesterday I finished my radiation and I'm done with my second round of treatment. I feel somehow tired of all the treatment but feel happy that it's over. I'm thinking of reducing my working days to two days a week. My oncologist is extremely against working at this stage and he told me to stay as far away from stressful situations as possible.

    Sara, I happy your mom is to finish her treatment soon. I can feel how hard it has all been to your mom and also you. But better days are awaiting you. By the way, I have lost most of my eyebrows after treatment. It's so distressing.

    Kath, you are so sweet. My best wishes go to you for your lifelong health and happiness.

    Love

    Hanieh

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh, Sarah and CocoonCat,

    Thank you all for your recent posts. I have read them all but have not had time to answer them. This has been a very busy week for me. I just wanted to say, Sarah, that I was very happy to see you back on the thread. I shall answer as soon as I can.

    Thinking of you.

    Love.

    Sylvia xxxx