Calling all triple negative breast cancer patients in the UK
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Hello everyone,
I am just posting to say that on December 20th I shall have reached 11 1/2 years since diagnosis. I like to post this news to encourage you all, the newly diagnosed, those going through treatment and those post-treatment. You can all do this.
Keep strong and positive.
Best wishes.
Sylvia xxxx
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Yay Sylvia, congratulations. You are my inspiration. I am sure you will live long and happy with your dear husband. You are very thoughtful and kind thinking about those living in poverty and how you wish your government should do more for them. I share the same thought for my country. There's just so many people now with very limited resources and our world is fast deteriorating. And you're right about governments spending for wars. I can sense it. I wish a new habitable planet will be discovered soon for the sake of mankind.
Ok, we have to erase those negative things and live each day with gratefulness for whatever we have. Let's just try to be happy for our remaining life.
Talk again soon,
Gina
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HI, Jacklin,
Sorry I didn't respond sooner to your post, I just saw it. How funny you were in Aruba the same time me and my sis-in-law were! We might have passed each other and not known. Although we were on Eagle Beach at the Bucuti-Tara, we did come up to Palm Beach, we ate at the Aqua Grill and looked at the Marriott I think, there were some huge hotels up there and all seemed crowded. Bucuti-Tara is small, adult only, and quiet. People that work there are so nice. But I thought it took way too long to get through airport when we left!
Sorry you are having all the snow, we had ice, followed by a little snow (which actually made it easier to drive), but mostly just cold, bitter cold. Ready for that to move out.
It almost seems like a dream that just last week I was overheated ha!
In answer to your thumb question: I can't say I have had problems with thumb, but I have had many other assorted aches, pains, tingles, etc. Some I had in a minor way before, but worse now. My GP lays it at the feet of chemo, which caused neuropathy, which causes only foot pain if you're lucky. If you're not lucky, then you have all-over pains. You may have developed some arthritis in your thumb too.
Talk to you later
Mary
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Sylvia,
Congratulations on reaching tomorrow your 11 1/2 year mark! That is hope for us all. For me next month it will be 3 years since I found the lump in my breast, it took another week or so before I got the official diagnosis in February 2014.
This next February will also mark 2 years since my husband has been gone, I can't quite believe that one either.
It is so very cold here the last few days, it is supposed to warm up gradually over the next few days. It is 2 F this morning, which converts to -16 C. But the sun shone yesterday for the first time in over a week!
Thanks for being here for all of us!
Talk to you soon,
Love, Mary
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Hi, Hanieh,
It's so nice to see pics of your pretty face again, glad you got to go on a trip North but it looks very cold too. I hope you get your car purchase done, it is a shame you are forced to pay so much in taxes to buy the car that you want.
My trip to Aruba was wonderful, but it seems almost unreal since it's been so cold here since I got back. Oh well, good to know that somewhere people are playing in the sunshine, I have to admit that somewhere inside me I like the 4 seasons, I like seeing the greening-up in the spring, and the occasional deep white snow in the winter. I do not care for the temperature extremes we have, the very hot and humid in the summer, and the bitter cold in winter; but it's all part of the package.
I guess you are still very busy with school and family, I hope you are feeling very well. I am not sure where you are in your school year.
Talk to you soon,
Love, Mary
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Hi, Gina,
I am doing my best to enjoy my life I have now; going through the cancer and treatment, and caring for my husband through his illness and death has made me very conscious of how quickly things can change. Now if there is somewhere I want to go, or someone I want to see, I make every effort to do so. I have found I like to have a trip somewhere in the not-too-distant future to look forward to, like dangling a carrot in front of a donkey perhaps! Thanks for thinking I am a spunky traveler, I don't feel old at 64, I just have a few more limitations than I had before, and have to learn how to deal with these things.
While I was in Aruba I didn't like seeing the Christmas decorations that were put up in buildings, and all the Christmas trees. It reminded me of how much Christmas prep I had yet to do, yesterday I was at home and played Christmas music all afternoon, finally I am ready to hear it. But I'm still not finished with the things I need to do. This week will be very busy! I have done a lot of online shopping since I have been back, I feel for the drivers who are delivering all this stuff, they are really feeling the pressure.
Gina, don't worry too much about all your Christmas prep, people who love you will understand about your situation this year, and will understand that you are not in shape to do everything you usually do. It is important that you stay as well as possible, and I'm sure they all want that for you too.
I hope you can have your treatment on the 21th as planned.
Lamis, I do hope your mother is doing better now, I am not sure what innohep is but I hope it does the trick.
Will be talking to you all again soon, Mary
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Morning Mary,
Thanks for responding to my post, I thought perhaps I shouldn't have posted when there were no replies.
Yes, it's hard to believe it was only a week ago that we were so warm. It is quite possible that we walked by each other on the beach, as funny as that sounds. We drove by Bucuti a number of times, in fact, I stayed there several years ago before the current renovation! Small world isn't it?
It's very, very cold here today but thankfully we're told it's the last day of the cold. It's -21C and then a wind chill on top of that. The nice thing is the sun is out so it looks beautiful outside, the snow is still 'clean' and white so the albedo (reflection) requires the use of sunglasses in our living room which faces south.
I'm off to have surgery on my thumb now. Actually I find that I"m more nervous about this than the BMX, which in my mind doesn't make any sense. Maybe because it's my dominant hand he's operating on. Chemo, the gift that keeps on giving - I truly believe this is from the chemo, along with the neuropathy. I'm now almost 10 months post-chemo and the pain in my hands and feet hasn't changed one bit. I suspect it'll be with me for the rest of my life. Maybe it's so that I'm reminded daily to be thankful for the life that I have.
Much strength for each day Mary. You are coming up to an anniversary of your husband's death, and there are reminders as you celebrate Christmas too. I will be praying for you, for strength and courage for each day and for comfort too.
Congratulations Sylvia on 11-1/2 years!! How encouraging for those of us behind you. Thank you for all your posts, you're so articulate and take the time to respond to each person, thank you.
Wishing you all a wonderful Christmas.
Jacklin
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Hello Gina,
Thank you for your post. Thank you for your very kind words.
You are right that our world is fast deteriorating and I think that if we do find a new planet, where life is possible, we humans will mess it up!
I follow the news very carefully and find so much of it very depressing. The news we get from the Middle East is all about conflict and killing. Will there ever be peace again in countries such as Syria, Iraq and Yemen? What is the point of completely destroying places such as Aleppo? Will these places ever get rebuilt? Will the children ever recover from such trauma?
I do not like the way my own country has behaved and I do not like what we are becoming.
I think that everybody has the right to a decent life. We get only one life and it should not be lived in hardship, worry and fear. Too few people have all the wealth and too many people live in a constant struggle to make ends meet.
I do hope you get through your FEC this week and that you will not feel too badly over the Christmas holidays.
The weather here in the UK does not sound too promising. It has been dull and cold all day and the weather is set to deteriorate towards the end of the week. We are approaching the Winter Solstice on Wednesday December 21st, which is the shortest day. I do not like these long winter evenings.
The schools, colleges and universities have broken up and already everything seems quite manic. Christmas seems to last two weeks here and things will not get back to normal until about January 5th and then there will be weeks and weeks of January sales.
I do enjoy hearing from fine people from different countries on this thread. It does open up the mind.
I wonder how Mary is getting on, back in the cold and preparing for Christmas.
Take care.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your congratulations. It seems a long time ago since I was diagnosed but if I cast my mind back my cancer journey is still so clear in my mind. There is no doubt that it changed my life. I had never been ill, so it was quite a shock.
How time flies by. It is incredible to think that it will soon be three years since you were diagnosed. Keep up the good work.
It is unbelievable that next February will mark two years since your husband died. I think you have coped very well.
I do not envy you your cold weather, but, at least you got a bit of sunshine yesterday. It seems as though here in the south west of England the sun has deserted us and the forecast is not good. There is no doubt that a bit of sunshine lifts the mood.
The other day I found a snippet of news in one of the newspapers. It was all about how "Stealthy breast cancer cells can spread and hide in vital organs even before a primary tumour has developed, or so researchers show".
There was not much in the newspaper snippet but I found a bit more in the JerseyEveningPost.com on line. You may want to have a read of it but you might want to leave it until after the festive period is over.
It is all about how the cells remain dormant for long periods of time and then awaken to trigger metastatic cancer. Apparently some 5% of women with breast cancer around the world have a disease that has metastasised or spread in the absence of an original tumour. How this happens has not been understood until now. Under normal circumstances, a cancer has to progress to an advanced stage before breaking away from the site where it first appeared. Research identified two genetic "switches", one turned on and the other off, that helped early breast cancer cells to travel to the lungs and other parts of the body. Once at their destination, the cells remained quiet until another growth was activated. Have you read anything like this before?
It made me think of my elder brother, Ken, who died on October 21st 1995, three weeks after being diagnosed with cancer that had spread to the liver and pancreas. He was 56. On his death certificate it was written, death from disseminated adenoma, primary unknown. Everything went so fast that we were all in shock. Tomorrow is his birthday.
Are you spending Christmas at home with visitors or are you going away?
I am still following all the news from the US. Hillary Clinton seems to have disappeared from the scene.
Here in the UK Brexit does not seem to be making progress.
I am wondering what has happened to Michael.
I have just received my latest free copy of Vita magazine, issue 30, Winter 2016/17 from Breast Cancer Care. It looks interesting. On the cover one article is Life 30 years on from breast cancer, another one is The day I was diagnosed as triple negative, and another one Managing FATIGUE and everyday life.
Let me know if you manage to read them. Remember they are available on line.
The McMillan website is another useful and reliable source of information.
Keep in touch.
Fond thoughts.
Sylvia xxxx
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Hello Jacklin,
It is so nice to have you posting on the thread. What a pity you and Mary did not meet up in Aruba, but you both seem to have had a great time.
I do hope everything goes well with the surgery on your thumb. I can understand your nervousness about this.
I do hope the pain in your hands and feet will gradually improve a bit. It looks as though neuropathy is a long term side effect of chemotherapy. I still have it in the feet but most of the time it does not bother me too much. It is definitely caused by the taxanes.
Thank you for your congratulations on my 11½ years since diagnosis. I like to post the months as they go by to motivate and encourage others. If I can do it so can everyone.
Where are you in the US? I remember the cold weather from when my husband and I lived in Canada for 17 years, in Montreal, Ottawa and London, Ontario. I remember temperatures of -35C on occasions, but often it was very sunny and I used to enjoy shovelling up the snow or using a small snowblower. We did look forward to the Spring Thaw!!
Sending you fond thoughts.
Sylvia xxxx.
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Hello Val,
I just wanted to say that we are all thinking of you as you go for a mammogram check up. Please let us know how you get on.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia, Mary and all wonderful TN ladies,
Just got my blood results, and it's a go signal for my 3rd and final FEC infusion. But there's a question i would like to ask my MO. I have been having itchiness and has now develop rashes on my back. I took Claritin for it because it worked before but now, the rashes persisted. I have been peeing a lot lately and yesterday i found out that my creatinine level was elevated, to normal high. I researched a bit on the internet and found out that my kidney may already be affected by the chemo drugs. My next infusion is in two days. I will try to drink lots of green tea and maybe chamomile tea also to try and lessen the creatinine, but this worries me. I already texted my MO, but she did not reply, must be busy.
What advice can you give me?
Gina
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Hello Everyone,
I received a pCR from my surgeon this morning, and I'm thrilled. I'll meet with my MO to determine next steps before the end of the year. I am definitely encouraged by your wonderful years since diagnosis, Sylvia.
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Good news are coming in for the TN ladies early this Christmas season. Valstim got an all clear sign from her radiologist too. Congrats lilyp!
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Happy Dance for lilyp!
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Gmmiph, hahaha!! Thank you. I'm wishing everyone the best news as possible as well.
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Gina,
Hi, that has got to be one of the funniest happy dance team I've seen, weird and wild!
As for your kidneys, they have a real job to do getting rid of all the strong toxic drugs we are given, I suppose they are stressed right now. Since they are proceeding with your treatment, the MO must think it's an acceptable range. My husband died of kidney failure, not from chemo! But I am very familiar with the kidney tests, the creatinine, and the BUN. His creatinine would climb up to 5 and 6 sometimes. I am not your doctor, but I am guessing she is thinking that yours is an acceptable number, and that the tests will return to normal once you finish. Let us know what happens next!
Talk to you soon, Mary
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Hi, Pam,
Great news on your PCR! That is a awesome way to kick off the holday season!
When I commented on your drains, I was thinking mastectomy only, but you are doing reconstruction so you will have a longer road. I think it is a good choice when you are young, (I don't really know your age, I am going by your picture) I chose not to do it because I wanted the fastest recovery possible. My husband was ill, and I had to be the nurse as well as the patient. You have a husband to help you, and you will do great. Might as well look at it as a positive, you are getting new perky boobs in the New Year!
Congratulations, Pam!
Talk soon, Mary
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Hi, Sylvia,
I agree about the cancer diagnosis changing one's life, since then I divide events into BC (before Cancer) and AC (after cancer)! I have quite a few physical reminders of it, and I think the most daunting is the mental side of it, the fact that it's always in the back of my mind and I have to work so as not to let it affect my decision-making too much.
I think coping with my husband's death was made easier by being with him 24/7 as his illness progressed. I saw the daily events and realized that he just could not go on anymore. He wanted to live, but living had become impossible for him, and he died. I still miss him for sure, I was dozing in a chair the other night, and I saw that he and my old cat were in the room with me. I was so glad, and then I woke and they were gone, I had a cold, lonely feeling for a bit.
Our cold weather is breaking, we are going to warm up a bit, probably through Christmas. It's funny, but my sinus condition seems to like it better when the temp is cold and crisp and stays that way. The fluctuations of the temperature seem to make my symptoms flare.
As to the article in the Jersey Evening Post you mentioned, it sounds like a alien horror movie. Invaders hiding in one's body until they decide to attack! But I suppose it is the stem cells? They are in our body all the time, and the chemo is supposed to attack and destroy them all, but that doesn't always happen. The ones that are not destroyed then lurk in the body until the trigger (whatever that is), is flipped and they turn on. I am not sure I am understanding about there not being a primary tumor at some time? Are you saying that it could be cancer in the lung from the breast without there ever having been a breast tumor? Does sound odd, and you're right, I don't want to think about it right now!
Sorry about your brother; if that had happened today, 22 years later, perhaps there would be more known about the cause of his death. That is very fast illness progression! I had a dear brother die quickly too, in 2012. He was acting very strangely for a few weeks, doctors didn't know what to think and referred him to a neurologist. To shorten this story, we could not wait that long and I took him to the Emergency Room one day, he was in the hospital one month and deteriorated rapidly every day, losing another piece of himself until he was in a coma. For weeks he was tested for everything possible and tests came up dry. Unknown to us, the neurologist had also sent lumbar spine samples off to be tested for a very rare disease and it came back finally positive for the markers for CJD, Creutzfeldt-Jacob Disease. It is a fatal brain disease that quickly eats holes in the brain, and there is nothing to be done about it. It is a still mysterious illness, his version was called sporadic, which means they have no idea why it happened. There is also a genetic version, that would have been even worse because it would have affected the entire family. Very strange the things that can happen to any of us, that is why I have decided to do all that I can to enjoy my life to the best of my ability.
I will continue this long post a little later!
Mary
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Hi, Sylvia,
I'm back to finish this post. I will be home for Christmas Eve, my children (husband's kids) and families will be here, then later on in the afternoon, we will all go about 10 miles and join our extended family (husband's side), for the evening. I usually stop and pick up a cousin/friend who doesn't get around very well and bring her along. I will have to break away and go to church at 7:00 PM because it is a big night for the choir. On Christmas Day my cousin/friend and I go to a friend's house and visit with them in the afternoon. My side of the family is not as usual, one of my nieces is pregnant and due any minute and can't travel, and another niece broke her leg. It is a very bad break and she will not be operated on until 12/22. She broke the leg on 12/11, but it was so swollen they couldn't do anything with it but wrap it up and send her home to rest and ice. We will do a small bit of celebrating at some point but I couldn't say when. It all sounds exhausting when I type it out!
We don't hear much of Hilary these days, they tried recounting votes in a few states but it didn't help her. The latest thing has been people trying to coerce electors to change their votes, but the electors in the 50 states voted yesterday and they voted for Donald Trump. It wouldn't have mattered if they didn't, the vote would then have gone to the House of Representatives and they would have voted for him. So now tactics have changed, they are saying all kinds of things such as they will refuse to call him President and so on. I hope he has good security, there have been many threats, but I suppose all Presidents and leaders have those.
I think Brexit is being quietly battled behind the scenes, no matter what the people wanted!
I hope Michael is okay, hello Michael!
I will try to check the Vita magazines out after Christmas, I am afraid I'm in the throes of Christmas angst! Presents, food, presentable house, I used to tell my husband I wanted to run away for Christmas, but I would check and it's always the most expensive time of the year to travel. Oddly, the week I went to Aruba is usually the cheapest time, I guess because most people are busy getting ready for Christmas during that week.
I also haven't looked for Chris Woollams' post in a while, I bet I have one somewhere in my inbox.
I will talk to you later, dear Sylvia!
Mary
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Hi Mary,
Thank you for the good wishes and the compliment! I'm 48 years old - not young at all, but ultimately planning on reconstruction. We'll see how things go. The most important thing to me is to be as safe as possible, and the cosmetic concerns can come later.
I never was able to post much, and now I'm back at work, so it will be even less. But I'm still here, reading and hoping the best for everyone. I hope you have a warm and wonderful holiday with your family.
Cheers, Pam
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hi everyone. Taxol no 9 this Friday. Has been a really bad week. Fevers nausea and a dry tickly cough that won't go away! Fatigue is building up and I'm having a bit of trouble with nausea again. . Settles the day before taxol is due! Only 4 to go!
Interesting news in Australia this week. It seems the Garvan institute have made a massive break through in the treatment of triple negatives. They are now able to turn off the protein
MCl -1
1 which is a cancer spreading agent whilst treating with Dasatiinib and the results have been dramatic. Stop the cancer in mice abruptly . Clinicalal trials to start within the next five years hopefully soonerp which should have huge implications for tnbc
Cheers
Kath
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Hello Gina,
Thank you for your latest post. I was sorry to read about the problems you are having. You really do need to discuss them with a qualified medical person such as your oncologist. There is no knowing what may happen when a person is on such toxic drugs as the chemotherapy ones. On the thread we are not supposed to give advice, as we are not qualified. Your oncologist will be able to tell you about the rash. I would think that while on chemotherapy and in the hands of an oncologist, you would need to get explanations from that person and ask before taking any other medication.
I do hope that you have had answers to your questions by today and I do hope that you have been able to proceed with your final FEC. Please let us know what goes on today and what answers you get about rash and creatinine levels.
Remember to drink lots of water during your chemotherapy and especially in the first few days to flush out toxins. Water is better than anything else for keeping hydrated and flushing out the system. Do not overdo the green tea, as it does make you urinate a lot.
We shall all be thinking of you today and wishing you the best.
Best wishes.
Sylvia xxxx
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Hello Pam,
Congratulations on your pCR. You must be feeling good.
Let us know how you get on when you meet with your MO before the end of the year.
I am glad that I can be of encouragement to you.
Take care.
Best wishes.
Sylvia xxxx
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Hello Mary,
I agree with you about how we now divide our life into before and after cancer. There is no getting away from that. The mental side is indeed very wearing and not something that you can convey to those that have not been through it.
I can understand how you miss your husband. I think you have coped with the loss of your husband very well.
I think these weather patterns going up and down are not very good for us and bring on sinus headaches. The weather is the same here in Exmouth, sometimes really cold and damp, and sometimes spring-like. I think the plants in the ground are very confused. The people of Exmouth seem to take it in their stride and the sea front is always busy, except when it is raining.
I do think the article is about cancer being in parts of the body, before primary cancers form as a tumour. If I remember correctly, it was stated somewhere that this discovery would turn the idea of metastatic cancer on its head. It is hard to comprehend, but I do remember reading in the past that cancer was a systemic disease and that the medical establishment just chose to name a patient's cancer after where a tumour decided to settle.
I was very sorry to read about your brother and the CJD. It was all in the news in the UK some years ago. It was somehow connected to cows and got passed onto humans. It was also discovered in cows that started to behave strangely.
I do agree that we never know what is going to happen to us during the course of a day and so we should just enjoy the moment. This can be quite difficult given all the problems going on in the world today. Goodness knows what is going to happen to Europe with all the problems of terrorism.
That is all for now.
Best wishes.
Sylvia xxxx
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Hello Mary, again,
Thank you for your post. Your Christmas sounds like it will be a very busy one. I hope you enjoy it all.
I was interested in what you said about what is going on in the US with reference to Donald Trump and votes. Like you, I hope he has a good security team. It is the same with Nigel Farage here. He has had four years of death threats but I think he has done a lot of good and we would not have had the Brexit referendum without him. I do think we need a general election because we have a Prime Minister who has no mandate from the people.
Let me know when you can if you have anything from Chris Woollams. I have not received anything.
Enjoy your Christmas.
Sylvia xxxx
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Hello Kath,
Thank you for your post. I was sorry to read you are having a difficult time. I do hope all will go well when you have treatment number 9 on Friday. Make sure you take your medication after your treatment and remember to drink a lot of water to flush the toxins out of your system. You should ask your medical team if they can give you something to ease a dry tickly cough, as this will make you tired, when you are already fatigued from the treatment. You are nearly there, so do not give up. Keep January 12th, 2017 in sight.
Thank you for the information about MCI – 11 and the drug Dasatiinib. We have had no news of this as yet in the UK.
We shall be thinking of you on Friday.
Best wishes.
Sylvia xxxx
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Hello Rhonda, ChrisAsh and Lamis (for mother),
Please let us know how things are going with you.
Thinking of you.
Sylvia xxxx
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Hello Val,
I am just popping into say that I am glad everything is OK and congratulations.
Have a good Christmas.
Best wishes
Sylvia xxxx
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Thanks so much . Yes I'm getting along well. I have a lot of weakness and soreness in my joints. Chemo aggravated my already existing arthritis.
Sending hello's to everyone and good cheer.
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