Hi Érica , @Bees , @Nichola75 , I had a consult with my lovely consultant -
In Tuesday he’s so gentle and respectful . My treatment has changed . I start a new regime next week and on a new drug . My stem cell transplant is a long way off if ever … my light chains are busy again . I’m okay just physically not as dextrous . I had an MRI yesterday . I hate those tubes they slide you in … but we found feet first (rather than head first ) is best for me 
. The new kitchen is looking brill and a joy to work in and can sit on a wheeled stool and unpack dishwasher , much more space and better organised . Still a few more bits to tweak and a massive throw out of pots and utensils . Anybody want a large Dutch pot 
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Hi @Mayo57 I can feel your lightness in your post that your stem cell transplant is a long way off, if ever.
Yes, MRI’s are not nice are they, feet first sounds good to me.
As for your new kitchen it sounds wonderful and your wheeled stool the icing on the cake.
Where and when did we accumulate such gigantic containers???
We downsized in 2013 from a house to a flat and it was the best thing we ever did and I culled then.
Now I have just taken everything off the top shelves of the kitchen cupboards to stop me going up step ladders, so another cull, I will trump you with a great big, very heavy, old slow cooker and a hostess trolley, vintage 1970’s !!!
Oh. I can just picture you on that wheeled stool whizzing around.
Look after yourself
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Hi all hope everyone is well.
Im 11 weeks post transplant now. Bloods are good and doc says she is happy I am where i need to be. Waiting on chimerism results in next week or so.
My q is for anyone who has had transplant how long has the fatigue lasted? I have to nap every afternoon as I am exhausted. I do a few bits around the house and go for a walk with the dog but am definitely struggling with the fatigue. I am 47 and prior to transplant my days would have been very busy. Im not looking to get back to that but i would like to feel that my energy levels were climbing a little or is that too much too soon?
I will ask my doc at next clinic but was just wondering if anyone could share their experience.
Many thanks
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I think you have to remember @Ashob that you and your body have been a lot emotionally, medically, physically and practically.
I think it is baby steps, and it sounds as if you are doing well with a few bits around the house and going for a walk in the fresh air with the dog, it takes a long time to build back up after a transplant.
See what your doc says next week and please let us know.
I await other’s experiences.
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Hi
Pleased to hear you’re doing well. Just think back to what you were like when you first got home, that makes me realise how far I’ve come.
I found I needed an afternoon nap until after my day 100 appointment but then I began to have days without one, I’m over 6 months post transplant now and can’t remember the last time I needed a nap, but I don’t get up very early in a morning! I don’t think I have the stamina I had and have to break up tasks with little sit downs!
I’m feeling really well but still having fortnightly bloods and appointments. Hope you continue to improve x
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Thanks Erica maybe im expecting too much too soon!
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Thanks @Suey you are so right when i think back to how I was when i came home and that was 7 weeks ago. I have definitely improved since then. Thanks for that x
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Hi @Ashob, thing to remember is everyone is different. If you feel the need to have a nap have one, there’s no right or wrong. A woman who had her transplant just before me would fall asleep waiting to go into clinic. I didn’t feel tired after mine but did try until the 100 days to try and limit what I did physically. The hardest thing was eating. I’m sure once you get nearer and past the 100 days things will improve. Hope you keep getting stronger
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Thank you Muzza yes hopefully once i get past this 100 day mark energy levels will improve.
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@Erica . Such fun now …. I keep thinking ‘what can I cook ?’ 
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Hi @Mayo57,
I hope that your new treatment regime is going well.
That’s such a brilliant idea about going feet first into the MRI scanner. I wonder why they don’t do that for everyone? But even so, I didn’t even know it was an option for combatting claustrophobia.
Enjoy your lovely new kitchen 
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Hello @Ashob,
So pleased to read that you’re 11 weeks post transplant now. Fatigue is frustrating! I think our bodies maybe tell us how much sleep we need as long as we try and exercise when we can as well. I’m 2+ years post transplant and I feel quite energetic most of the time and very rarely nap in the day but like @Suey, I don’t get up terribly early. Its that early morning time (around when I used to get up for work) that I seem to fall back into the most deep and comfortable sleep!
I hope that day by day you will feel a bit stronger and that your doctor will be reassuring at your next clinic appointment.
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Hi Ashob,
Like coast girl I’m 2 years post transplant and generally my fatigue levels are minimal. I do however had odd days where I feel completely drained…it’s not a tiredness I experience more of a brief spell of complete physical and mental fatigue. I think this is due to all I’ve been through mentally and physically since my diagnosis.
On these days I take things slow and now try and listen to my body, something I never did pre cancer. I think if you need a nap then have one, there’s no right or wrong as we are all so individual. I’m trying to live my best life despite these ‘niggles’, that’s how I like to view them…I feel I’ve been given my life back so I am going to try live it to the fullest. Just pace yourself and gradually your strength and stamina will build. Take care xx
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Hi Erica and everyone on here. I haven’t posted for ages while I recovered from Covid and have been suffering with a bad back.
Had MRI scan and I have 2 fractures at the base of my spine. I have now had a PET scan and I now have myeloma which is devastating to me.
My stem cell transplant is now gone and I’m in great pain. Only got these results last Friday
Obviously I’m very worried about my whole health outcome and don’t know what to expect. My leukaemia team will now take a back seat and let the myeloma team take over. I suppose I will meet them soon now that I have been given this news. Would be nice to hear your thoughts and input. Hope everyone is well and getting better, much luv Gary xx
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Oh @Bees I expect you are feeling devastated, recovering from Covid, which probably really takes it out of you, and now firstly to find that you have 2 fractures of the lower spine (and I certainly know about that and the pain you must be in) and secondly that you have myeloma.
There is information on myeloma on the Blood Cancer UK website Myeloma | Blood Cancer UK and on the Myeloma UK website Understanding myeloma - Myeloma UK
There are quite a lot of people on our forum living with myeloma and posts about it.
Please let us know how you get on and be very kind to yourself you have had a great shock.
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Good morning @Bees. It sounds like you’re having a really rough time, both physically with pain, and the diagnosis of myeloma and understandably, you are feeling the way you do. It’s so much to process. As @Erica has said, use the support line if needed and be kind to yourself.
I hope you get an appointment soon so that you can discuss next steps. In the meantime, please keep posing. We are all here for you X
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Hi @Bees you really have been through the wringer. I was diagnosed with Myeloma nearly 5 years ago by the same symptoms of back pain (in my case a vertebral fracture which meant I couldn’t walk). I hope that your Myeloma team are able to come up with a plan soon and give you some reassurance. The pattern of your treatment will be fairly similar to what you’ve had previously ie potentially radiotherapy for the back, followed by chemo and transplant. I hope you’ve got plenty of people around you supporting you though I know it must be so awful to get this news after everything else. And of course we on the forum and the Blood Cancer Support Team are heare if you need to talk.
Hello @Bees,
I’m so sorry to read your post. Having one cancer diagnosis is seems quite enough and to get another one is no doubt such a shock! And Covid on top of all of that…
When you say your ‘stem cell transplant is now gone’, do you mean you can’t have another one? I’ve used up both of mine (autologous SCTs for Multiple Myeloma) and my paraproteins have recently had a little spike so I have been busy looking into what kind of treatments might be ahead of me when the time comes.
One hopeful thing about Myeloma is that there are many new treatments and trials of treatments out there and I think you can have up to five lines (planned sequences) of treatment although of course I’ve no idea how your history of leukaemia interacts with this. I’ve had rib fractures and spine & neck lesions and have found that the treatment helped me a lot with the pain of these. I hope that your medical team will soon find a way to reduce your pain levels.
@Erica has mentioned Myeloma UK. Myeloma UK have a new service called the ‘Peer Buddy Programme’ where you can have six sessions (by telephone or Zoom) speaking to a trained volunteer who has myeloma. The organisers will try to match you with someone who has similar experience e.g. maybe they have a volunteer who also has both leukaemia and myeloma?? I’ve no idea how rare this is although I have heard of it once before. But even if not, perhaps it might be a good way to get your head around a new disease from someone who is also living through it.
Peer Buddy service - Myeloma UK or phone the Infoline 0800 980 3332 for more details if you think this could help you.
I hope that you will be able to find a way through navigating this new situation and of course there are all the great resources here on BCUK as well.
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Hi Summertime Lynn. Chris. Erica Nichola and everyone else. Forgive me if I have not named you all. Well…,… I’m sorry I went off radar but things didn’t go well really from day one. I won’t go into all the details but I was discharged after 6 weeks and re admitted 3 days later. I spent seven months in hospital with 6 ICU admissions and it was all due to sepsis. The just couldn’t find the source of infection. Seemingly my consultant had never seen this before. BUT… I am still here to tell the tale. I hope to give hope to others that no matter what’s thrown at you … you can get through it!! I thought about you all often and hope that you are all doing ok. I really don’t want to worry anyone waiting on a Stem cell transplant as I was maybe a one off…. I feel so well now and even though it was rough, I would do it again. ( hopefully that won’t happen ). 
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Gosh @Danmar you had really gone through the mill over the few months.
You and your body have been through so much that I expect it will take you a long time to recuperate.
Slow and steady wins the race and celebrate the little wins
Please keep posting how you are and be kind to yourself
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