I’m a newbie on here…but not to Myeloma. I had a stem cell transplant (own cells) in November 2018, so seven months on, I’m still experiencing tiredness / low level fatigue.
Is this ’ normal’??, as I am made to feel it is not by the Specialist Nurse.
Thanks in advance for any replies.
Hi Cazzie, a great big welcome to our community forum, I find it interesting and supportive and I hope you will too. My reply is not a medical one as I have found we are all very individual, special people with complex histories treatments and personally I do not feel there is a ‘normal’. But you know how you are feeling and you and your body have been through a lot physically and emotionally and sometimes I find I need time for my body to process and build back up. These are my personal thoughts. However the Bloodwise support line is there for you on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm but you can get in touch whenever you want and leave a message - they say they will get back to you within one working day. Please keep posting how you are and how you are feeling as we are all here to support each other.
Dear Cazzie welcome to the forum from a fellow myeloma patient, I did not receive a transplant but meet many people at clinic who have had the procedure and their recovery is very variable. We are all unique in how we react to any of these treatments and it’s unfair to compare yourself to other patients. I have had extensive chemotherapy and had minimal side effects but fellow patients have suffered much more whilst having identical treatment. If you feel there is some underlying medical reason why your recovery is slower than expected please insist on getting your doctor to run more blood tests to be sure nothing has been missed. As you will be well aware myeloma is a very challenging disease and being kind to yourself is an absolute necessity. Always here to help in anyway. Alfie female 55
Erica, thank you so much for your kind words and reply.Your words have made me think and realise I need to listen to my body and respond accordingly.
Thank you Alfie for your welcome and quick reply to my question. Your words have made me feel better and I realise that I need to listen to my body and seek other medical opinions.
Dear cazzie, please keep us updated on your progress, we are here to support you, especially from the emotional point of view as we all know from experience the stresses and strains of having a blood cancer. It’s really a journey rather than a destination and you shouldn’t travel it on your own if you don’t want to. No one will judge you here no matter how you are feeling, so feel free to express yourself whenever you feel ready to share your thoughts and fears and hopes for the future. Best wishes alfie
Hi Cazzie, welcome to the forum! I’m sorry to hear you’ve been made to feel like it’s not “normal” - it can be! Anthony Nolan have a great PDF on fatigue post transplant, https://www.anthonynolan.org/sites/default/files/Managing_Fatigue_After_A_Transplant_Anthony_Nolan.pdf - you’re not alone!
Hi Cazzie. I am surprised that your specialist nurse doesn’t feel that your fatigue is normal. I had my own stem cells transplanted in March 2009, followed by RT 3 months later. I had also undergone 2 operations and several regimes of chemo for aggressive, relapsing HL. My consultant smiled and said that it was early days when I was complaining of not being able to do things 18months later. I think each case is different, as each of our blood cancers presents and is treated uniquely.
You also have to factor in whether you have family commitments, or have started back to work, how much more housework you have started to do…You are the one who knows your body best. Be kind to yourself and don’t overdo things. Best wishes
Thank you for your response. I have taken heed of your advice . Regards.
Dear cazzie, have been doing a bit of research and found this very interesting article from Anthony Nolan about recovering from a transplant and thought you might find it helpful. It covers both mental and physical recovery which I think are equally important. Let me know what you think . Best wishes alfie
Thank you, thank you,thank you.
I have read the article :'re Mind…recovery from SCT.
I was pleased to read about post SCT, I related to many things and after reading felt reassured that I was not making my ‘feeling and symptoms’ up!
At my next clinic appointment, I will discuss these issues and refer to the article.
Hi Cazzie, welcome to the forum. It sounds like you’ve been given lots of great advice already, but I thought I’d add a bit!
My son is 9 months post treatment for ALL so a different situation to you (no SCT), but I think the emotional toll it has taken on him (he’s 6) and the rest of us is probably just as tiring as the physical impact and I’m sure it’s normal to expect the same for anyone who has been through something as big as cancer treatment. Wishing you all the best and I hope you find the forum helpful. Lisa x