Fatigue post stem cell transplant

Hi Alfie

Thank you for your reply, I had transplant 6 months ago and physically am doing well, energy levels good. My hair is very slow in growing back and that bothers me more than maybe it should? But the anxiety is a real issue which I need to get on top of somehow.

Liz

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Dear Lizzie, having read your previous posts and profile it’s easy to see why you would have anxiety. The shock of receiving a aml diagnosis and beginning treatment straight away followed by a transplant would be very overwhelming for anybody. It’s only now you are in recovery that you have the time and energy to process everything you have been through. It’s like you’ve been in a battle and now your trying to make your peace with the enemy (the aml) how long this takes will depend on the individual and you should not put any pressure on yourself. I lost all my hair during chemotherapy and it has grown back slowly but now resembles a proper haircut and I have decided to keep it short as I find it quite liberating. Given the seriousness of my own illness ppcl myeloma it’s a miracle I’m still here and my hair regrowing is a sign that where’s there’s life there’s hope. So hang on in there, anxiety can be reduced with the right help and we here on the forum are here to support you on your journey. Best wishes alfie.

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Hi there and thank you all so much for your messages and support it means so much.

It sure is a rough old ride! You are all amazing and give me so much hope :blush::+1:

Liz x

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Hi, we are all here to support each other as we are likely to be the ones who really understand what each other is going through, those fears, thoughts and feelings, let alone the treatments and side effects. I find people in the outside world, including some family and friends, do not know what to say, say what I feel is the wrong thing or tell me how well I am looking when I feel terrible inside. Even without treatment my hair has got so much thinner, one nurse said to me that as the weather in this country does not usually have real extremes, your body says I am using all my energy and strength fighting this disease that something has to give like your hair and being able to fight infections etc. No idea about that theory. Don’t forget we are here for you on your rough old ride.

Hi Lizzie, have you ever thought about counselling or emotional support to help you with your anxiety? It’s understandable that post treatment & transplant you feel more worried and anxious than before. Have your friends and family been supportive?

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@Robson Thank you for sharing your experience, I am sure it will be really helpful and validating to others. You mention about taking things slower and listening to your body - was this advice given to you, or did you learn this yourself over time?

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Dawn,
It took me 4 years to understand my GVHD (read: my immune system) and to realise how everything is in delicate balance within me.
Sufferers walk a tight rope, with the wind, heat, cold, fatigue, bacterial and viral infections always threatening to knock you off.
There can be little doubt that GVHD is a disability - no I don’t like that word - a serious condition. Not visible like losing a limb or perhaps as debilitating, but more catastrophic in consequence long term. But if you ask an amputee how he feels about his accident and subsequent disability he will (hopefully) tell you how he feels incredibly lucky to have survived. Ask me the same question and you will get the same answer to a factor of 10.
In our case the key to our survival is to recognise the threats before they occur and then deal with them without delay if they do. Sitting back and letting nature take its course, like I did in my last life is no longer an option.

Sorry I’ve gone on a bit again but I do wish I hadn’t had to learn all this the hard way!
However CAR-T cell therapy should make a SCTs a thing of the past, so with a bit of luck nobody else will need to learn this - and that will be very good news indeed.

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Hi Robin thanks for your words that so clearly chart your experiences and self learning. I certainly agree that having a blood cancer is a journey of self discovery, personal insight and hopefully learning, although in my case often the hard way. Yes, I feel lucky to have had this opportunity but also wish I hadn’t. Please keep posting your insights.

Don’t apologise for a long and insightful post, I greatly appreciate hearing your experience and I know others will have found it useful too, and reassuring to know they’re not alone. Your description of life with GVHD as being like walking a tight rope is a very good, helpful analogy.

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Hi everyone,
Just a query, has anyone experienced hair coming out again after transplant? I am 6 months post and hair really not growing as it should and even coming out again?? I’m so devastated as every time I look in the mirror I just see this sad person and what Iv been through! Just want to look like my old self?

Liz

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Dear Lizzie, although I did not have a transplant I lost my hair taking doxorubicin chemotherapy, I found during the first 3 months it grew back back very unevenly and slowly, six months on I would say I have full coverage but it grows more slowly than before. Did you have long hair before transplant, as I expect it’s more difficult to adjust if you did. I have decided to keep my hair short now as it is curly now and I had a Bob before. I have read that in a small number of people hair regrowth can be slower than average, maybe it’s time to see a trichologist to put your mind at rest as stress is sometimes attributed to hair loss and you may be caught in a viscous circle of slow regrowth and anxiety. I would talk to your gp for advice about the best way forward. I hope this helps. Best wishes alfie

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Hi Alfie thanks for responding, my hair was thick and in a bob prior to chemo, I now have hardly anything at sides and very fine fluffy hair about half inch on top and back of head. My consultant thinks it’s very unusual ( great!) and has referred me to dermatology.
I know I should stop obsessing over it but it’s hard.
Best wishes Lizzie

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Hi Liz. I had hair loss 3 times during my treatment for Hodgkins Lymphoma, during chemotherapy, after SCT, after RT (which was 3 months after SCT). My hair came back dark and curly at first, and I loved it, but now it is straight again. I found wearing headgear uncomfortable and hated the wig, so went out bald and proud. My youngest also loved to massage my head when he was working on the computer near where I sat. I don’t know whether the combination helped. Best wishes Louise

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Thank you Louise for taking time to respond.
I massage castor oil in ever night and stopped wearing wig while ago as felt weird in it!
I’m hoping that eventually my hair will grow properly it’s just strange that it’s taking such a long time which is unusual.
Best wishes Liz

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Hi again. I also used baby shampoo for quite some time. Try not to stress as this works against you in so many ways. I am pretty sure it will grow back, but like time taken to recover, we get impatient after being ill for so long and just want to get back to a ‘normal’ life (and that’s a misnomer because nothing is ever the same again) Enjoy life Louise xx

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