Leukaemia CARE
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Getting there,!!

Almost 9 months since my stem cell transplant tho still breathless getting stronger and being more positive daily,!!

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Good news Topteam hope positive progress continues

UK Sparky

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Wonderful - I found after my transplant that each day was and still is a magical journey with new adventures and new learning. I have also learnt that if my body says rest - I do so immediately. Good luck in your journey.

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Stay strong it is an uphill struggle but it will get easier. Took me a long time to feel like me again but I did it. Stay positive and strong you can do it.

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Hi Topteam, it sounds as if it really is a day at a time, but as they say slow and steady wins the race. Take lots of care of yourself and keep posting, I find this site very supportive.

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Slow and easy that's best way.im 4yrs in from transplant still get days when I get tired but they are getting fewer now.so all the best and keep posative.

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Wow so inspirational, best wishes to you,!!

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Glad to hear that things are getting better Topteam. Stay strong, stay positive and take care

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Sounds like really good news. Here's hoping the improving continues. Wishing you all the best

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Wonderful Comments on here, wishing everyone all the very best, you are all so very inspirational and supportive, thank you, :)

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My problem is Myeloma, diagnosed 19 years ago and after 8 years watch and wait I had an autologous transplant 10 years ago. 2 courses of chemo have followed since but I keep pretty fit and lead a reasonably normal life, for a 76 year old. I do have some peripheral neuropathy which affects my balance but as Billy Connolly said “ a well balanced man is a man with a drink in each hand”.

Just keep positive and only do what you feel like doing and when you feel like doing it.

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Hi Topteam

Been away for a few days, hence the late reply. It is nearly 10 years since my first transplant and I cannot remember how long it took to get back to "normal" but I do remember the excellent advice that I was given at the time - take one day at a time and do not try to do too much too quickly. You sound as if you are getting there - good luck

Kleighton

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Hi Kleighton. You mention it is ten years since your first transplant - did you have a second one? If so what were the timescales in between transplants? What happenedto you to prompt second transplant? I ask because I have a friend who beat bowel cancer 10 years ago. He was diagnosed with ALL Leukemia prior to Christmas. He had chemo and went into remission then had a stem cell transplant about 4 months ago. Bloods were all fine 12 days ago. 8 days ago I saw him and commented that he looked so much better than I had seen him look in months. 6 days ago (only 6 days after blood test results) he was admitted to hospital whilst on a weekend break in Sussex, presenting with severe chest pains very similar to those that led to his Leukimia diagnosis. After two days he was transferred to a hospital local to his home and is waiting for a bed (5 days so far). in London hospital where he is being treated for Leukemia. Unfortunately in the meantime a bone marrow biopsy yesterday has confirmed Leukemia has returned, though what type is to be determined.

Obviously I recognise every person is different, and am trying to remain positive and hopeful, but can't help but think the cards are stacked against him. Hence my trying to find the good news stories on this site in order to try to remain positive and hopeful. I hope you don't mind me asking. I am a member of the PMR/GCA community on healthunlocked and have found their support invaluable on my PMR journey. Hence my reaching to this group to help me to understand what is happening to my friend to guide me on how best to support him and his wife. I am a forearmed forwarded type of girl!

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Hi Marilyn

The marker for my Myeloma is the para protein level and when the level rises above a certain amount there is a risk of bones becoming brittle and then I have to have tretament. My first transplant was in May 2009, the second in April 2014, then I had tablet chemo starfting in September 2016 and I have just started the latest round of treatment which is by infusion. In each it was because the para protein levels had gone above a certain level.

Hope that helps

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