Newly diagnosed

Hi Dunaway and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about diagnosis.

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 living with an incurable blood cancer.

I also totally understand the Stem Cell Transplant (SCT) journey as I have had 2 Allo (donor) SCTs the first in June 2014  with the second in Oct 2015 and it did the job for me…… yes it was hard work but worth it.

There are a few active members at the moment so let’s look for them to pick up on your post. Do 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.

There are a few members in this group who have been through SCT but we do have a dedicated Stem Cell Transplant support group where from folks from all the blood cancers including Myeloma support each other of the SCT journey.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

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, 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.

Hi Dunaway,   please forgive this copy and paste from  yesterday,  but it will give you  a bit of an insight of some of the things to come,      not so much advice,  as      what happens,  we are all different,    and  i am just about to come to end of Cycle  3 for MM DvTB     which is going well  at the moment,  

paste 

  i hope you were given some fact sheets on the drugs medications ,  i also walked out of the hospital with steroids and the plan for cycle 1 started the following week    each cycle is  24 days,  i  visit the hospital  3 times per week   Monday always bloods,  dont miss them,  with no blood tests you may not get the treatment,    Tuesday   treatment,  Friday  treatment        all Subcantanuoius  abdomen  injections,       day  1 of  the cycle is a 15 minute IV   drip with  one drug,    the   game changer  is the use of the NON  Chemo drug Daratumumab (Darzalex®)  with Stroids taken at home before the injections and then also the next day,    this is  works with your own immune system to attack the Milemona DNA  

like you the team of nurses and the Consultant Haemotogist   are great,       i am 66 male    got the news on y  66 the birthday and my retirement day,  for fast track Cancer,   MRI  X RAY  BONE MARROW BIOPSY yes  MM    confirmed,    so the plan was given to me,  some in plain English a lot from the SCT  nurse     i have my SCT  lined hip for early 2024     please dont be afraid,  the treatment works,  my blood test are in a good place right now,    the side effects drugs you will take home     need managing   in a diary,  and get a good   head  thermometer for recording temperature,  i have a  Sepsis plan in place from the Hospital   god forbid i need it,  but it gets  fast track A and  E  within  1 hour of admission,  so an important document,         insomnia  is my   big problem  and for the first time i have  had to take a pain relive stinger than  Parcetoml,  due to a recent  slip  on my arse,  which  does not help any MM   patient  with weak bones,   hope the  rant  helps you,  i am the same   journey,  and   take care to care for your carer,  they are probably just as freighted as you are    Kevin  and of course best