12 months post stem cell transplant

Happy 1st Re-Birthday when it comes Kevin Vespa ….. our 4 granddaughters insist on a cake every year….. my next one will have 10 candles….. and I have been getting age specific birthday cards each year

SCT gives us the opportunity of a new life….. yes it can be different…… but it’s up to us to grasp the opportunity and live the re-birth to the full.

Hi Kevin 

I am now nearly 7 months post sct I am on a trial only have 2 cycles to go then I go onto maintenance treatment lenalodomide and isatuximab I feel great now getting back to new normal it has been brutal like yourself not what expected from retirement

but onwards and upwards we'll done to you

Christina aka kizi

Hi All.

Kevin and Christina, glad you are both doing well. Likewise for me I am in a new normal. In remission now for 21 months. Getting maintenance chemo. Also getting fatigued thanks to the chemo but much better than the alternative! Enjoying my new normal life. Exercise, reading, music, a bit of work, enjoying nature. Being with family.

Hi , lm in a similar place , diagnosed in dec 23 , rough 2024 really , few hospital stays due to bad reactions to the chemo and maintenance drugs then  had my sct in June 23 & being part of a trial lm now on cycle 5 of maintenance treatment , lenolidomide & maintenance drums evey day & hospital visits every two weeks for transfusion of a drug which helps my immune system target the myeloma ( which l can’t for the life of my remember the name of ) & not forgetting my bone strengthening drug once a month , lm feeling good in Myself but do worry what the future holds , at the moment the  myeloma seems to under control so decided to start living life to the full what ever that means

Hi “. Mandy’s bloke “. I hope. Mandy is doing ok with this also      Is the drug you get.   Daratumbaba. ?      And Zometa for bone strengthening?      I guess we all get you to thinking about the future with. M. M. As we all expect it to come back at some time.    We are on 1 st line of treatment.    There are still many options open to us if and when it returns.    Including another SCT.     I see thus stage as an opportunity to live the “ sweet spot “ if time.    Do the things you want to do.    Don’t out them off   I am going to Australia in May.  To see my sons and new grandchild.     I missed one of their weddings due to MM. but insisted my wife and. U. K son go.       I read what Thehighlander has gone through and find inspiration from this and others that have a life living with. M. M.     Not being morbid but my wife and I made a Will. Just to make things easier.       I will not let this disease beat me or control my life     It’s not easy.    Some good days and bad as we know.     I now have 3 grandchildren and I will be there to see them go to school       Please reach out to Macmillan pamphlets. Living with myeloma!     I vowed after asking once of my hematologist  consultant for a prognosis. Of     What to expect      And the new research and treatments for MM. are my positive hopes for the future!        I have a few mates who keep me centered and humorous comments and pub meetings.        Keep in contact with the forum   People will give you support.     You are not alone with this !    Kevin

I know you weren’t replying to me, but just thanking you for your reply. It’s really inspirational. I’ve just started my treatment so it’s nice to hear good stuff and from someone who is much further ahead. 

Hi everyone,  I had my stem cell transplant 16 months ago. Was really poorly for about 3 weeks but slowly recovered.  No side effect at all. I've been in remission just over a year and started to get my life back to my new normal. But with having a weak immune system I seem to pick up everything and I've been in hospital 4 times with chest infections and I am in hospital at the moment with 3 infections!!

Has anyone else experienced this. I'm so careful if I go out, I wear a mask and always use anti bacterial wash etc.  It's beginning to get me down. Just hope this isn't part of my new normal @

Hi Bunky although I have not been treated for Myeloma I have had 2 Allo (donor) SCTs for my 2 rare types of T-Cell NHL……. I am now 9+ years out from my last SCT and even now, I can easily develop infections.

SCT is a life saver…. but can also have a long term affect on our immune system….. in the first few years post SCT I was back in hospital 5 times (about 30 nights) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, and Neutropenic Sepsis x2…..

But my immune system has slowly improved…… but I do also have 2 sets of antibiotics on the shelf that I get on repeat prescription that my GP trusts me to use at the first shin of a chest infection starting…… these antibiotics with me on holiday and it’s a number of years now since I was in hospital due to chest infections.

The immune system is rather like an athlete….. so the infections you have had will be putting your immune system through its paces and will slowly help it to develop that protection you need.

Hi Kevin , thanks for the reply , yes l do take Zometa for the bone strengthening & l think the other is  Isatuximab via transfusion every two weeks , its  a monoclonal antibody that attaches to CD38, a protein found on cancer cells , Apparently this is only because l'm on the radar trial and this is not given on normal treatment paths .Its good to read theses forums and read how other people are copping who are further along than me in there myeloma battle . Thanks David