Calling all triple negative breast cancer patients in the UK

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  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh,

    Thank you for your lovely photographs. The buildings all look very interesting and you, your husband and daughter make a very nice family. I can see a tinge of sadness in your face and I hope this will slowly disappear.

    Enjoy the rest of your holiday and make the most of every day.

    Sending you fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Kath,

    I was glad to know you are feeling not too bad and that you are enjoying having your grandson to visit. Keep looking forward. Your AC chemotherapy will soon be over. You are getting through this.

    Thinking of you and let us know your next date for chemotherapy.

    Fond thoughts.

    Sylvia xxxx

  • lilyp6
    lilyp6 Member Posts: 130

    Hello Everyone,

    Thanks for your kind wishes about treatment. For the newly diagnosed, it's probably good that we get more info about our diagnosis these days, but sometimes I get overwhelmed with it, and I definitely "pick and choose" how much I want to know. One thing that I looked up very briefly was the reason for the Carboplatin. Here is what I got:

    Adding carboplatin to paclitaxel in the neoadjuvant setting for triple-negative breast cancer significantly improves pathologic complete response (pCR) rates.

    That is basically what I have been hearing from my oncologist. From that I understand that our doctors want to maximize response on the front end of treatment, for obvious reasons, and that's good enough for me for the moment.

    Sylvia, Thanks for clarifying about the medullary classification. I actually have IDC. I enjoyed your description about "arriving exhausted," from your travels, but having to visit everyone. That's exactly how I feel with chemo. Everyone wants to see me, and that's the one thing I usually cannot provide. You are correct that my next AC is scheduled for 9/20. I will certainly try some ginger tea this time.

    I had a visit on Tues with my oncologist's PA this week. I was past my worst SE's from my treatment on 8/30, but not feeling my best. I had planned to work all week. Between my pulse rate and my previous low white blood counts, she urged me to stay home, rest, and watch for (vague) signs of infection, that might not even include a fever. Of course I knew about the AC nadir, but didn't connect it with my blood test and the fact that I was now rock bottom in terms of immunity. That was worrying, but I stayed home as directed. My pulse seems fine now, and I'm hoping for a good blood test tomorrow, and yes - getting 2 more giant syringes full of poison this Tues. She said the Neupogen is quite a production the way it's administered, so I'm hoping to avoid that and stay on schedule.

    She had some good advice about the Emend, which is given in the IV, and meant to help with nausea. It hasn't impressed me at all, so she said that I should ask for Aloxi instead. Maybe I'll have an easier time with that.

    She also said that since my numbness is in one foot, it's unlikely that it's caused by chemo, which tends to give that kind of trouble bilaterally. Her guess was that it was simply a pinched nerve, so I'm working on it from that direction.

    Wouldn't it be nice if there was more of a dietary integration component to all of this so we could more precisely understand the timing of the beneficial things we want to eat and drink? We can ask, but we do get a lot of conflicting advice. I know there is definitely "blanket" advice in the orientation that we get that doesn't necessarily apply in all cases. I agree that the medical team doesn't get trained in this, so they just don't really know.

    I hope everyone is feeling upbeat today. As always, I'm happy to see the traveling, the recovery, and most of all, the advice that helps us fill in the gaps that our doctors can't.

    Pam

  • maryna8
    maryna8 Member Posts: 1,832

    HI, Sylvia,

    Thanks for your encouragement and understanding, it is so appreciated. I think I make the mistake of thinking I "should" be better by now, physically, mentally, emotionally. When I find that's not true, I tend to go into negative territory and have thoughts that I will "never" feel better. Add to that trying to adjust to my husband's illness and death and it feels like such a load on my shoulders at times. I bought a small book called "The Cancer Survivor's Companion". It is pretty good, it contains testimonials from a lot of cancer survivors and reading it makes me realize again that we all share the same thoughts, fears, emotions, and that we have to be patient with ourselves. We all have different timetables. It also has helpful tips for small things we can do to help ourselves through the process of recovering.

    I find myself feeling physically a bit better the last few days, I am wondering if the sinus infection was helping to bring me down, I think I had it quite a while and since I had no fever with it just I just assumed it was chronic misery. I have another packet of pills to start at the end of the week, and then I am finished. There are lots of allergens around here at the moment, ragweed being the prominent one, doesn't help! Since that treatment and my last visit to the acupuncturist there has been an improvement in my energy level.

    Like you, I would hope others here would read the Chris Woollams' newsletter, but I also realize sometimes there is just too much information for people to absorb. I post a few links, and that way if anyone wants to look at it further it's available to them.

    I am not sure about causes of dementia, one view talks about "sticky" plaques building up in the brain. I don't know about loneliness causing it, I suppose if one has no stimulation it could aid to developing it. There was a lot of dementia/Alzheimer's on my dad's side of the family, he died at 68 before he had a chance to get it. So my siblings and I are a bit paranoid about it. Woollams' says that Vitamin D helps ward it off too, although so many people around here who have it are old farmers who spent their lives outside in the sunshine, what does that tell you? Not much, just brings up more questions. As the experts say, Research is Ongoing!!

    Don't know what to think about the Brexit situation. sometimes it feels we win a battle, then the other side refuses to acknowledge it and just keeps working to bring it down. No matter the will of the people.

    Our leaves are not yet falling but are still thick and green. We have had so much rain that summer-like humidity just continues. I guess Mother Nature will get caught up eventually.

    I will talk to you soon, thanks for everything, dear friend.

    Mary

  • maryna8
    maryna8 Member Posts: 1,832

    Hi, Hanieh,

    Wow, it looks like you are seeing some amazing things, so much history. Sorry it's cool and wet, but then when I think of Russia that's how I think of it, at least it's not snowing! I am excited you are to go to St. Petersburg, there you will see the Hermitage Museum, in what used to be the Winter Palace of the Tsars, I think built by Catherine the Great, or the Tsar before her. I read somewhere that there are so many artifacts in the Museum that if you saw them all it would take 11 years! Just think of how much was probably destroyed in the Revolution of early last century, it would probably fill another museum. If you like tragic stories, you would be interested in the story of the last Tsar and Tsarina, Nicholas II and Alexandra and their children, a very gripping tale.

    I think travel is just the most wonderful thing, to take your mind off troubles and woes, nothing better. Enjoy yourself, and keep taking pictures!

    Talk to you soon, love, Mary

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Pam,

    I do hope everything will go well tomorrow when you have your next chemotherapy treatment. I am sure we shall all be thinking of you.

    I do understand how overwhelming all this can be for the newly diagnosed. Yes, you do need information, but get the basics first and concentrate on that. On diagnosis you need to know your receptor status, the size of your tumour, the stage of your tumour and the grade. You also need to know what kind of breast cancer you have. I would hope that most people reading this thread would already have these details or from reading the thread would know to ask for them. You need to know whether any nodes are affected.

    All this is quite enough to take in as it is all part of a new world for you.

    You need to know what the treatment plan is, whether you need chemotherapy and whether you will have it before or after surgery. This usually depends on the size of the tumour. You will need to know about surgery and whether it will be a lumpectomy or a mastectomy that is suggested. Finally, you will need to know whether radiotherapy is planned. With all this you can start your treatment and will find that you are kept busy during all of this.

    What you do not need to know is any doom or gloom!

    You are right, Pam, to pick and choose what you want to know.

    I was very interested in what you had to say about carboplatin. We have to remember that a lot of us went through treatment before platins were used and we still got pCR. However, if this extra drug does help that is all for the better.

    I can understand that after chemotherapy treatment you need to be quiet and peaceful and are not really up to having people around and using up energy talking to them, I do remember I just wanted peace and quiet.

    I do hope some ginger tea will help this time. Let us know how things go.

    I would think it is very hard trying to go through treatment and combine it with work. These toxic drugs really compromise our immune system and we are really very fragile and vulnerable. It is a time for a lot of TLC.

    I do hope you have an easier time tomorrow and that the anti nausea medication that is in the drip will keep you free from any nausea or sickness. Make sure you drink plenty of fluids to keep hydrated, take the medication you are given for the first few days after chemotherapy, rest as much as you can and tell yourself you are going to be fine. Try to eat small nutritious meals to keep your strength up and stay away from all situations in which you might pick up germs or infections.

    With reference to eating, I was told to stay away from raw foods such as lettuce and seafood during treatment, for fear of infection.

    I may be cynical but when it comes to food and what is good for me, I tend to trust myself. I think the medical establishment is slowly coming round to admitting there is a connection between healthy eating and fighting disease. It has been a long time coming.

    Wishing you all the very best.

    Fond thoughts.

    Sylvia xxxx

  • Amanda10
    Amanda10 Member Posts: 66

    Hi Sylvia/all

    Just popped on to see how everyone is.

    Hanieh your photos of Russia look fabulous, my daughter has always wanted to go there. I'm very sorry to hear about your friend .. Such a beautiful young girl .. So sad .

    I wondered how often everyone is having appointments? Mine was every 6 months and mammogram every 12. My last appointment I was told it's going to be every 3 months , this is good be also scared me a bit . A lady I know from Wales who was diagnosed withTN the same time as me isn't seen at all !!!! Unless she has problems. I was just wondering how it is for everyone else.

    A big thanks again Sylvia for keeping this thread going you are an amazing lady

    Love AmandaHeart



  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    I was glad to see you back on the thread. Just try to take things easy. Remember you are recovering both from your own breast cancer and the death of your husband. That is a lot to deal with. In addition, you are running a home all by yourself and that is difficult too. I have a neighbour here in his eighties who is having a very difficult time and is still devastated after the death of his wife three years ago. He probably talks to Raymond and me more than anyone else in our complex, but he is desperately lonely and yet does not want to mix much with anyone.

    That book The Cancer Survivor's Companion sounds most interesting. Tell us about some of the tips in it.

    I was glad to know that physically you are feeling a bit better. I would think that the sinus infection has not helped. Here in Exmouth people seem to be very affected by allergies, despite the fact that we are told the sea air should do us good. We are also victims of ragweed. Raymond suffers badly from allergies and they seem worse since we moved to Exmouth. He can wake up in the morning and suddenly start sneezing and that is set for the day. I am not an allergy sufferer, but lately I have started to feel a bit sniffy from time to time. We are very careful about any toiletries and cleaning products and keep everything to a minimum. I think most of the time people are suffering from the greenery all around us. It is strange because we should not be affected by nature. Right now the huge sycamore trees at the back behind our complex are shedding their leaves in masses and they are all dry and dusty. The little leafy seeds are horrendous. Spring and autumn seem to be the worst for allergies.

    Let us hope that people on this thread are reading Chris Woollams' newsletter. It is useful even if only bits of it are absorbed. I have been reading them and was especially interested in one article entitled "Antibiotics linked to obesity and type-2 diabetes. Is there a link between antibiotics use and diabetes?". Research shows that repeated use of antibiotics seems to alter gut bacteria causing obesity and leading to type 2 diabetes. This is especially the case for young people. The antibiotic Tylosin had the most dramatic effect on research with mice. Amoxycillin led to an increase in bone growth and height. The researchers observed that both antibiotics significantly disrupted the gut microbiome and the immune system. I think this should give us all food for thought. It is good this research is coming out because it just backs up what Chris Woollams has been saying for ages about the importance of a healthy gut.

    That is about all for tonight, Mary. I shall write more tomorrow.

    Thinking of you and sending much love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Amanda,

    I was glad to see you popping in. I agree with you about Hanieh's photographs of Russia. It looks like a very interesting country.

    I was interested and curious in that you said about your post treatment appointments. As far as I know, in the UK, and at least speaking for my own, my post treatment appointments started with three-monthly ones. They alternated between seeing the oncologist and the consultant breast cancer surgeon. After about two years the appointments went to every six months and again the alternated between the breast cancer surgeon and the oncologist. I always saw the actual oncologist and not a stand in, whereas with the breast cancer consultant surgeon I quickly went to seeing her assistant. After a few years the appointments went to once a year and it was with the oncologist. It was after about five years that I was discharged from the breast cancer surgeon. My oncologist kept me on with yearly appointments until I had reached ten years and she then thought I could be discharged. I think it is unusual to be kept on for ten years, but I was glad to be kept on. Whether this was anything to do with having been TNBC I do not know. The women I know around me were all hormonal positive and were discharged after five years, but then kept on for a bit longer on tamoxifen or something like Arimidex. I know there was talk of extending the tamoxifen and Arimidex to ten years instead of five, but I do not know whether this has happened.

    During the ten years I had mammograms every three years.

    How long ago is it since you were diagnosed? It would be helpful if you could put your details under your posts so that we all have a reference to your date of diagnosis, your type of cancer, your receptor status, your size of tumour, stage, grade, nodes affected. You also need to put your surgery, your chemotherapy regimen and amount of radiotherapy. It keeps us all on track when we are responding to you.

    You should just ask your oncologist and consultant why they have gone from six months to three months. It could be that they made a mistake in the beginning by starting you on every six months.

    Different hospitals probably have different post-treatment check ups. You cannot really compare Wales and England. Although we are all under NHS it is all very political. At the bottom of it all is probably money. We are supposed to be a United Kingdom, but in effect we operate as four different countries.

    If I were your friend in Wales, I would be asking why I am not getting any check ups.

    Let us know how you get on but always remember to speak up and to be your own best advocate.

    Thank you for your kind words about the thread.

    How is work going now?

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    I am out of time at the moment, but will post as soon as I can. I heard on the radio this morning that Microsoft now wants to get involved with curing cancer and reckon they could do it in ten years. They mention something about cancer being computational.

    Whatever they do I hope it is better than their software.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Michael,

    I have missed you on the thread lately and i was just wondering whether all is going well with you. I do hope so.

    Have you been following the Labour Leadership election? I have watched all of it but am tired of it all now. Everything seems such a mess. I think we need a General Election.

    I do hope we hear from you soon.

    Sending best wishes.

    Sylvia

  • maryna8
    maryna8 Member Posts: 1,832

    Sylvia,

    Here is the link to the article you heard discussed on the radio re: Microsoft and cancer.

    http://www.telegraph.co.uk/science/2016/09/20/microsoft-will-solve-cancer-within-10-years-by-reprogramming-dis/

    Mary

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    Thank you for your post. I shall look at it tomorrow.

    I hope you are having a better week.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Rhond,

    Thank you for your PM. I do hope the information I gave you will help.

    You are welcome to come and join us on the thread.

    Wishing you all the very best.

    Sylvia xxxx

  • honeytagh
    honeytagh Member Posts: 447

    Hi Sylvia, Mary, Amanda and all

    Mary what a good knowledge of Russia and its history you have.

    I hope your sinus infection has got better by now. I was sorry to hear you were suffering from it.

    Amanda, I strongly recommend you to visit Russia. It's really fantastic.

    Moscow is a modern city yet has kept its traditional architectural style which is really amazing. Saint Peterborough, on the other hand, is completely historical, never has let anyone touch its pure historical architecture. It has been made of several islands with many bridges and fantastic buildings.

    Last night, we went to another folklore dance. There, I saw many tourists from different countries like England, Spain and Holland. There are also many Chinese here. In the middle of the show, some dancers came to the audience and picked some people from different countries to go to the stage to dance with them. Guess what! One of them was my daughter. We were really excited and it was a very enjoyable experience for my daughter. She danced with them as if she was one of the group. At the end of the show, a lot of tourists came to us with admiring words and expressions. It was really pleasing.

    Today, we visited the Hermitage museum. The beauty of the Hermitage can't be expressed in words. It belonged to the Catherine the great and the many shows from different countries one of which was Iran.

    I would like to post some pictures which show a touch of the beauty of this city.

    Some buildings here:( I took these pictures in the bus)


    image


  • Clauclau
    Clauclau Member Posts: 11

    Hi Sylvia, Mary and everybody else in the thread...

    I have been away for awhile. Actually, since the end of August which took me a couple of days to read and catch up.

    So a little bit about what is going on with me lately:

    1- I had my birthday fundraising party on 8/28 and we raised $1,500 for the breast cancer cause. I am now deciding if it should donate it to the Breast cancer. Org or if I should send it to the cancer society. Org. What do you think? Are they the same?

    2- I will put some pictures of the event later since I love pictures and I thought it would be a great way to get you all acquainted with my friends here in CA.

    3- the next day after the party I had my 3rd AC infusion and I went down for the entire week with nausea and fatigue. I have 4 types of medication for nausea but only Lorezapam seems to work ( and of course, it puts me to sleep! )

    4 - one day I woke up with my right arm very heavy and numb. The right side of my face was tingling and feeling of pins and needles,some small burning sensation around the eyes, mouth and nouse ... So I called my doctor and I was told to go to the ER - Which I responded it promptly.

    5- I ended up having a CT brain scan because I am not allowed to have MRI - I still have the tissue expanders and they have a metal port inside! Results came negative for strokes ( which is good news!j) I am sorry to hear that one of the girls in this thread had a real minor stroke. I hope you feel better. I had several doctors following up to what might have happened to me and the neurologist said it was most likely a Thoracic outlet syndrome which led me to do physical therapy.

    6- next step was to add some physical therapy to regain range of movements and to minimize the interference of the nerves on my arms/ face - mainly at the right arm. For some reason , after 2 months of BMX surgery I did not regain my right arm movements completely, and after the ER visit I decided to have some professional advice. For example, t-shirt is still not an easy task for me. Only buttons shirts... But I wasn't too much worried about it. After 2 sessions of physical therapy I feel much better now. 👏🏻👏🏻👏🏻👏🏻👏🏻

    7- last week I saw my PS and I said I was ok with 450cc of filling . Well, he said he needs to fill up a little more to allow replacement on the same number. I am sure he knows what he is doing, but I couldn't resist the joke " men don't really listen what we say, and he is probably thinking like a men right now! 😂😂😂😂 it sure put a smile on my face ( and some heaviness on my chest ) after leaving his office

    8- my PS asked me again about radiation therapy. I have consulted several sources from people who had it and people who didn't have it. Since I was board line on the issue ( and yes, my MR suggested just because it was a triple negative) , I am insisting on NOT pursuing radiation after chemo. I am willing to deal with life changes and other non conventional treatments I may need to go in orderto avoid radiation. It's an extensive program. Please remind me later to disclose here. It was designed by the homeopathic Doctor that I mentioned before. I am taking a break from him right now... It was too much to absorb while on chemo treatment ( and don't forget, he asked me to go fasting for 48 hours before my next infusion .... That part I skipped !) there is no way I will be starving before chemo...so I will continue my natural treatment after chemo is over ;)

    9- just had my last AC infusion yesterday and I feel less nauseated today. I am still resting in bed, but feeling less noxious than prior weeks after chemo.

    10- got already all my schedule for taxol. There will be 12 weeks starting in October which brings me to December!

    11- I am looking forward to 2017!

    Well, I am tired now. I need to grab a bite. It was nice to reconnect with you all. I am sorry it took me Awhile to write a few notes. On the bright side, I read most of the articles and links. I also hope that Microsoft can help scientists with finding a cure for cancer.

    Sylvia, next time I will give you all information about my alternative Doctor. He prescribed me 2 books to read... Need to find out where I put his notes ! Ouch....

    Have a Wonderful rest of your day!

    Love ,

    Claudia ( Clauclau)

  • Clauclau
    Clauclau Member Posts: 11

    imageimage

    My fundraising wig party!

    Note: everyone is wearing a wig!

  • kathseward
    kathseward Member Posts: 380

    day 6 and first day off Dex today! Soooo hard! Really down! Keep think only 1 more AC to go then halfway there. Wish I could shake this fea

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Rhond,

    Thank you for your PMs. We shall all be most welcoming to you on the thread and we shall help you all we can.

    I was glad to know that you have now been able to ascertain that you are definitely triple negative (ER-, PR-, HER2-). Do not read or take any notice of all the doom and gloom about triple negative. Be positive about triple negative. Everything is a bit of a shock and frightening with a diagnosis of breast cancer, no matter what the receptor status. You need to try to relax and get your information about your treatments so that you know where you are going. As I said, it is not unusual to have neoadjuvant chemotherapy treatment (chemo before surgery) to try to shrink the tumour and make surgery easier.

    As you can see from all the people on the thread there is life during your cancer treatment and afterwards. There are all ages here and all different countries.

    Let us know how you get on today and if you have your chemotherapy drugs sorted out.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Hanieh, Kath and Claudia,

    Thank you for your posts. I shall be answering later on today.

    Mary, I still have to look at your link and I am still studying all the Chris Woollams information.

    Best wishes

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Henieh,

    Thank you for the beautiful photographs you are sending us of Russia. How are you managing to put them all together like that? I think Russia is a mighty country and I have a great love of the classics of Russian literature. My favourite authors from the past are Tolstoy and Dostoevsky. Have you read any of their great works?

    I was most interested in what you said about going to another folklore dance. You must have been very proud to see your young daughter dancing.

    Tell us all about your visit to the Hermitage museum.

    I hope this visit is giving you some relaxation and peace of mind.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Claudia,

    It was nice to have you back on the thread and to know that you have been able to catch up on all the posts.

    I was interested to know about your birthday fund raising party and I am amazed that you raised $1,500 for the cause of breast cancer. It would be a really lovely gesture if you decided to donate that money to breastcancer.org, as they are doing a really amazing job and we are all here benefiting from it. I cannot believe all the people going through these threads and all the different threads.

    Thank you for the lovely photograph of your wig evening. Like you, I love to see photographs on the thread as I think they cheer us all up.

    I was so sorry to read about the trouble you had after your third infusion of Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide) = AC. I think we all suffer from tiredness and fatigue after each infusion, but I would have thought that by now the experts should have nausea under control. After all, it is in the drip with the chemotherapy drugs and patients are given anti-nausea medication to take home with them to prevent all this. I was surprised that you had to have four types of nausea medication to try to deal with this and that only Lorazepam worked. Lorazepam is an anti-anxiety and sleeping pill so it must have knocked you out. Doxorubicin is a very toxic chemotherapy drug and the most common symptoms are nausea, vomiting, loss of appetite and hair loss. It belongs to the same group as epirubicin. When I was going through treatment I asked my oncologist what the difference was and why she had chosen epirubicin. She told me it was less harmful on the heart. Who knows where the truth is? I was fortunate, I suppose, never to have any nausea or vomiting. As you know from the thread, I used ginger throughout my treatment. I was told to make sure I had breakfast before setting off for the hospital for treatment, even if it was just toast and eggs. Do you go through your treatment on an empty stomach?

    Are you making sure to keep well hydrated?

    I was very concerned that one day you woke up with your right arm very heavy and numb and with the right side of your face tingling and with a feeling of pins and needles, as well as a burning sensation around the eyes, mouth and nose. That must have been very frightening and you did right to call a doctor and get to ER.

    I am so sorry to know that you had such a bad time.

    At least it is good news that your CT scan came up negative for strokes. Can you explain to us what the neurologist called a "thoracic outlet syndrome". I have never heard of this.

    How are things going now with your arm movements? I hope things are improving.

    When you had your double mastectomy (bi-lateral surgery) were you shown how to do exercises straight away? The morning after my right mastectomy I had a visit from a nurse who showed me stretching exercises to do immediately. Did you have any problems with lymphoedema in the arms? Sometimes this happens and you need to attend a lymphoedema clinic to be diagnosed with this and to be shown exercises and manual lymph massage.

    Did you have your reconstruction surgery at the same time as the double mastectomy or if not how long after it did you have reconstruction?

    Have to go. More later.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Claudia, again,

    I am sorry for the interruption, I had a visitor.

    I was wondering why it is that you do not want radiotherapy. Standard treatment usually is surgery, chemotherapy and radiotherapy. Radiotherapy is a lot easier than chemotherapy and does not last as long. I had three weeks of radiotherapy and you have to go every day of the week and then a rest at the weekend. The treatment itself is very short. Radiotherapy was explained to me as the last part of the treatment and is done to mop up any stray cells that are lurking around. When I had finished this I had an excellent pathology report and was told that I was NED (no evidence of disease). This is the best result you can have from the medical team's point of view. They will never say you are cured.

    I do not think that radiotherapy is confined only to those patients with triple negative receptors. I have quite a few friends who had ER+. PR+, HER2-, with small tumours, who had lumpectomies and radiotherapy but did not have to have chemotherapy.

    Can you explain to us why you are so against radiotherapy? It is good for us all to know.

    What are you planning to do when you have finished chemotherapy?

    What natural treatments are you thinking about? If you are certain about this, you might want to have a look at Chris Woollams' information on Cancer Active website. You can sign up to his newsletter. He believes in integrative cancer treatment - orthodox, complementary, and alternative. You can even have via Skype a personal prescription with him.

    Let us know about the programme on which you are thinking of embarking.

    I was glad to know that you are not feeling so nauseous after your last AC infusion. Keep drinking fluids and get as much rest as you feel you need.

    I can understand you are looking forward to 2017. It is not that far away.

    We shall all wait to see what Microsoft comes up with.

    I am looking forward to reading about your alternative doctor and all the information. I shall be very interested to find out about the books as well.

    Take care of yourself.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Kath,

    I wish I knew how to lift your spirits. I was sorry to read that you are feeling down. Try to look forward and on the bright side. Tell yourself "look at me, I am nearly at the end of AC and things are not that bad". You are going to get through this. Look at Claudia. She has just finished AC and has had a bad time, but she is getting through. The two of you will be going through paclitaxel (Taxol) more or less at the same time, so you will be able to compare notes, you in Australia, and Claudia in the US. You were both diagnosed this year and more or less at the same time. We are going to get you through this. Pam, in the US, is also going through this. You are not alone. Here we have three women all going through chemotherapy and you are going to come out the other side.

    Try to relax and do anything you can to throw away negative thoughts.

    Sending you fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    I just wanted to let you know that I have read some of the link. It is all very interesting and we shall have to see what happens. It is going to take ten years anyway! Goodness only knows what the world will be like then!

    Thinking of you.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Kath, again,

    We also have Chris here in England UK going through chemotherapy. The drugs regimen are almost the same with Chris having epirubicin instead of doxorubicin. All of you having cyclophosphamide, all of you having paclitaxel (Taxol) and two of you having the additional carboplatin.

    It will be a great day when all of you finish your chemotherapy journey and I hope you will celebrate then.

    Thinking of you.

    Sylvia xxxx

  • honeytagh
    honeytagh Member Posts: 447

    Hi Sylvia

    When I was at university, I used to read lots of Russian masterpieces, yet as time passed on and I got engaged in the world of teaching I got farther and farther from the beauties of the literature world. But walking in the historical streets of Saint Peterborough, was like walking in a live historical novel. This trip was really educational.

    Hermitage museum has gathered the world's masterpieces of many artists and it sure needs days and even weeks to enjoy part of its beauties. With all the pictures of such great artists as Leonar do Davinci and all the beauties of the architecture and the great views of all the windows there, you can hardly understand the passage of time.

    Here are some more pictures of the city and the night scenes .

    By the way, I have an app on my cellphone by the name of Layout by which I make these pictures.

    image

    image

  • honeytagh
    honeytagh Member Posts: 447

    To all my dear friends here who are in the middle of the treatments :

    As you see there is a great life after all these and your good days are awaiting you. Just try to keep your faith in all the good things that are going to happen to you.

    You are all in my thoughts and prayers.

    Love

    Hanieh Heart

  • kathseward
    kathseward Member Posts: 380

    thanks Sylvia try hard! Almost halfway there and it's comforting to know everyone is there ! Only 1 AC to go thank goodness! They wanted to put me on antidepressants but I don't want to do that! I just need to enjoy each da

  • kathseward
    kathseward Member Posts: 380

    thanks hanieh! It's very hard isn't it? Ur pics of Russia are amazing