Hello new to the group

Hi Bobbet03

I feel for you and your husband I have been fortunate since diagnosis in June in that I have had no bone issues apart from a small lesion on my spine, treatment started very quickly to treat and strengthen bones and i was placed on a trial called RADAR. The trial failed me 5 days before stem cell harvest. 

My Myeloma was discovered by accident when I went through private medical to get kidney stones removed that I had had since early February 23. The consultant urologist called me 2 days after I went to give pre meds to inform me that he could not operate due to an issue with my bloods. My GP called me 10 minutes later to ask me over for blood tests, on the monday I got a call from the hospital asking me to come in the next day my 66th Birthday to tell me the bad news. MRI, CT Scan, bone marrow biopsies were planned and as I say treatment started very quickly.

It is such a complicated cancer with none of us having the same symptoms, it affects us all very differently.

My advise is to make a list of questions for the consultant, do not rule any questions out even if they sound silly, use the Myeloma UK site which has some excellent literature which is downloadable or you can get booklets delivered. Macmillan has also got a very good selection and can offer various grants, counselling etc. Maggie's centers are very good with lots of help and just to pop in for a cuppa and blether, partners and family are all very welcome and they can sign into Myeloma Uk and Macmillan  dont forget if you or your husband feel you need a good rant go ahead and have it.

I wish your husband well with his treatment and please look after yourself.

Steve 

Hi  Bobbet03       like Alamo ( Steve)  has written,  we are all so different,  i am  66 male,   MM diagnosis also on my 66th  Birthday from random blood tests,        i think  they obv  want to fix husbands spine first,         since  diagnosis   i have had  4 cycles of DVTB  a blend of Chemo  and immunotherapy injections and tablets at home,  Stem cell harvest took place   2  weeks ago,     and Stem cell transplant   has been put back 1 week until the 24th  due to a slight heart flutter,  they picked up on ECG,   the Bone marrow  biopsy,  whilst not  painful can give some patients some discomfort,   if offered  Gas/Air mix   you could   have him  take that,    i drove to mine and then drove back home again,  this was really  to confirm the diagnosis,   the    treatments work,       the advice from   Alamo  is  good,  great support on this forum   and also in the written word,         the  future is not bleak   with a very good    healthy living  prognosis  with  ongoing checks post  transplant,       Kevin  

Thanks Steve for the info I’m all for discussing & sharing but not my husband I think forums like this can only be helpful as people share their experiences & give insites that we might not be aware of, thanks again.

Bobbet

Hi Vespa,

Thank you for your reply I’m very grateful for your information I’m confused about the stem cell treatment though what is this? I’ve heard no mention of it,maybe early days since diagnosis but what is it for, should we mention it to the specialist? I suspect they will come on Monday for the biopsy maybe they will say more then but if we know about this we could ask. Once again thank you

Bobbet

HI  again,    i am no  expert,  but i think    the Bone marrow Biopsy, MRI   scans  and blood tests build up a picture at what  stage the  MM is at   in the body,  DVTB   abbreviation  is  https://www.myeloma.org.uk/understanding-myeloma/treating-myeloma/initial-treatments-for-myeloma/       over   4-6 cycles,   each cycle lasts 24 days,   with a few days  break in-between,     the  treatment is normal as an outpatient,   with   injections  in the abdomen,  and  expect to visit the hospital   2-3 times per week,  i  had to have blood  samples taken every monday,  and treatment  in the  hemotoglogy   department      tuesday and friday,     over these cycles the  Consultant saw me  after  each cycled and shared the   blood test results with me,       i took  various  preventative medications at  home,     antibiotics,      etc etc,  and of course Thalidomide  tablets at home every  evening,     after 4 cycles i was deemed suitable for stem cell harvesting,   which  is  totally painless but   please   get some info from Macmillan and blood cancer.org         i  do think  this is still,  as you say  Early days on the diagnosis,     i have some hip  lesions,  which varies between pain,  and      aches,          i hope this information is good for you to understand,    and wish you both well,  and the carer  also needs a lot of support,  not just the patient      !!   kevin

Hi again,

My husband had his bone marrow sample taken today & was given the RADAR forms for the trial. I’ve brought them home to have a look at but on reading them it seems the treatments offered are not all available on the NHS if you don’t participate in the trials, am I reading this correctly? We were told he’d be having chemotherapy so now I’m slightly confused does everyone have a stem cell transplant even if they are not in the trial? It might be that he’s not suitable anyway but after reading the information sheets I’m not sure I’m entirely happy about some points they haven’t explained it fully to him I feel.