Hello

Hi Talatoots88 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey you have been on.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well……. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT).

There are a few members in this group who have navigated the same path but you may also want to join and post the n our dedicated Stem cell transplant support group as there are others in this group who understand. 

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hello Talatoots88  I had a SCT on Sept 21.  It was a rough ride and very eventful but today I feel great and so very thankful. But I do get nights when I feel a bit anxious from all I went through. When people tell me l look great I take that compliment and think about how I looked post transplant. I am considered a very positive  person too but that was one big experience that you and I went through and really it’s still early days. Hopefully as time goes on our fears will lessen. There’s always this group chat here for you.  Every Best Wish

Hello highlander thanks for your message and info. Hope your doing well. 

Thanks for message mardan. It's nice to know hopefully I will start feeling better as time goes on.. everyone always says to me how well I look also, I'm glad they see that as I don't feel like it inside.... I'm getting through everyday as best I can and it is what it is.. stay positive! Hope your doing well. Regards 

Hi  Talatoots88 I am doing great....... 7 years and 8 months out from my second Allo SCT, turned 67 last Nov and living a great life 

Highlander so glad to hear your doing great!.. I will hopefully get to where you are one day fingers crossed .. take care

Just a question highlander... I haven't had my vaccinations as in childhood ones yet.. I'm not a big believer in vaccines anymore, I have my reasons... Did you get them? I'm in a dilemma because obvusly I don't want to get infection etc.. but then I'm afraid of vaccines now sounds silly to you I suppose but it's how I feel. I don't know what to do. Seems to me every conversation I have with myancer doctor and in reviews etc, first question is always have you had the vaccinations and sort of forceful too... I think why do they always ask that first?.. thanks

Hi Talatoots88 I most definitely did get all the vaccinations that I could have….. but not any live ones as I was not allowed to have them.

My vaccinations started a year post my second Allo SCT….. during that year leading up to my vaccinations I was hospitalised a few times for a week with Pneumonia and Neutropenic Sepsis a few times plus the RSV Virus…… 

Once I started and had all my vaccinations my infections reduced significantly. You have the immune system of a 9 month old baby and you know the challenges these little ones have in their early years….. but more so thinking about how vulnerable your ‘jest-washed’ bone marrow now is…… even if your blood counts are up dies not say your immune system is working…… it will not fight things like Pneumonia……. the last time I had Pneumonia it was a blue light job, there were no signs that it was developing, one moment I was fine the next……. I was in a very bad way….. since having my jabs no problems.

My simple view was….. I had went through a very challenging journey (see my full story in the link below) and there was no way I was going to jeopardise enjoying my new opportunity of life by not having a few jabs……that in themselves I had no side-effects from….. and I was going to do all I could to turn  my families stress levels down based on the episodes before my vaccinations…… but of course it is all a personal choice…… but as yet I have never meet a medical person who would recommend that route.