Myeloma

Hi Animac and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your partners Myeloma diagnoses.

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.

There are a few active members at the moment (both patients and family) 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.

You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and provide support for all the family.

Always around to help more or just to chat.

HI  Animac,    i have  Multiple Myeloma,   diagnosed in June/july 23.   When through some easy  treatments  called DVTB   with local  hospital  injections in the Haemotology  department,,  and some home meds to support the cycle    of   28 days,  for  4 months,  with a small gap in-between,    then  Stem cell transplant in Feb this year,   slow recovery,       with   loss of weight,       pain in some limbs and     support from  wife and family,   not  painful at all,  but certainly     discomfort            now   on the last  2 cycles  with monday blood tests,  its all about the blood checks,     as Thehighlander   says,   reach out the   the Forum and Macmillan  they are wonderful,  and Mike  gives very sound advice,  and he has  been on a Big journey,    easy to say,  but a positive attitude  is still helping me,  and the love of my family and grandkids,       all the Best   Vespa   aka  Kevin

Hi Kevin Vespa good to hear from you…… a question I have always thought and never asked…… have you a Vespa?….

I used to have a Vespa scooter in my younger care free days.    Red.   White coach lining.     Good fun in the dales.  

Thank you so much for replying to me, my partner is at the beginning his treatment, he starts his first round this Wednesday. It's the same treatment as Vespa has received by the sound of it. Thank for the information it all helps at the moment 

Thank you Vespa I'm sorry that you have Myeloma as well, I'm very new to this and am really worried about saying the wrong thing on this forum, I'm clumsy with my words sometimes. I believe my partner is going to start the same treatment as you.

He is in quite a bit of pain at the moment, and is recovering from a nail and pins in his upper arm, they also found old fractures in his lower spine and now has pain in his sternum and legs, so may more damage to his bones ..we don't know, I am cross that we were dismissed by our GP for months before his diagnosis... Put down to arthritis with no tests to prove it, take care of yourself and tnk you for replying

Yes.  I had 4. Blood tests for a son condition. First.       Diagnosed as.  Scabbies      Then my doctor got on it.    And then incredible fast track.     M. R. I.    X. Ray.  Bone marrow check.   Ten appointment