Just started treatment for myeloma

Hi  Orange and blue    there are few of us  on the Forum gone through the journey  like you,    i am   15 months post SCT   and   leading a good life,  in Remission,    i was diagniosed on my  66th  Birthday,    now coming close to my  68 th    like you i had    4 cycles of DVTB   a combo  of  injections and home tablets ,   with      1 blood test visit per week and  2 hospital visits for my  injections,      take a book,   some food  and be patient!    some of my  injections literally took   15 minutes,   in my  abdomen,   not all were chemo,   the  tablets  thalidomide at home are chemo     after   4- 5 months i went for Stem cell harvest,    this  involved sitting in a chair for  6-7  hours,  whilst they take blood from you,     harvest the plasma  and then  put  the blood back,  all in one action,   no pain at all,   they  took enough over 2 days to give 2 SCT   one goes in  back up for you,      a few months later  was my SCT  which did  involve the body conditioning   chemo Melphalan   then next day was the  Transplant itself,   this only takes about  30 minutes,      the  hospital recovery took me  10 days,  in high care,  and i think  we come back to that for you,   as this is the tough part and needs some   stay prep and mental prep,      a lot to take in there,  but i leave you this thought,     the  treatment  is cutting edge,   yes even on the NHS     i take tables  on remission  and it is worth the effort,      i could not have done this journey  without the support of my  wife and kids and friends,      please keep in touch on here,  other folks i am sure will post a reply to you,      you are not alone,   Macmillan  info packs are brilliant  and    easy to  read  with no big medical  jargon,    Kevin  AKA Vespa  

Hi sorry to hear about your diagnosis I was the same as you was diagnosed  in February 2024 was High risk started  a radar trial I am.ten months into post sct feeling good I get chemo once a fortnight and I am on tablets for 3 weeks and one week off . Hope this helps. 

Sorry meant to reply to orange and blue 

Orange and blue, welcome to the forum.

The treatment plan which you outlined is pretty normal. It may well get tough at times - there can be some pretty unpleasant side effects - but you will get through it.

This is a supportive forum, and many of us have gone through the process which you have started. Vespa has already given more detail. Please feel free to ask for more information and advice.

For myself, I am celebrating being in remission for 2 years, despite not having had a stem cell transplant (due to another health issue). I did have the rest of the treatment that you are going through. I currently take a chemo drugs most days and get blood tests and an injection every 4 weeks. Enjoying life!

Ok.  I understood 

Hi orange and blue I was diagnosed with Myeloma in March 23 had sct in November 23 and have been in remission for 18 months. My journey  was exactly the same as Vespa and yes the stem cell transplant was the hardest part. Really ill for 10 days but worth every minute.   I have a maintenance drug for 3 weeks on and one week off and regular blood checks.  Apart from back pain  I lead a fairly normal life.  Some things I can't do but you will know your limits.  And yes the forum has helped me.  Always someone to chat to.  Yes it's tough at times but I feel great and have a brilliant family and friends.  Sending you good wishes.. Bunky 

Hi Orange & Blue, I started chemo last Friday after watch  & wait since August 2023. Four cycles, daily meds, weekly subcutaneous injections and monthly bloods. The two more cycles and maintenance. My main issue is the dizziness, worse first thing but improves over the day. I’m guessing this is the thalidomide. Would anyone know if the symptoms get worse with each treatment or do you build up a bit of resistance to it? Many thanks

Hi GW2  I also got dizziness but was never sure what caused it with so many other things happening   Mine went as quickly as it turned up.   I focused on diet.   Water  and REST !      Sometimes I ft a bit of a fraud but you know dep down it’s serious. Others on this forum helped me a lot.       I was a bit fearful of the chemo before transplant but knew it was needed to kill off any remaining cells.     It is truly worth the effort and the incredible passion of the staff in hospital hat support us.  Amazing people.    Kevin ️

Hi Vespa, thanks for that. Yes, I’ve gone from a three cappuccino girl to three litres of water a day, it definitely clears the brain a bit. The forum is a great support, doesn’t stop the anxiety but it helps to know the path through others experience. ️

Thankyou so much for your reply and all the useful information.  I really appreciate it,it's good to hear from someone who gets it and you don't have to try and explain what you don't really know yourself. Thanks Sue