MM an introduction

  • 15 replies
  • 50 subscribers
  • 681 views

Hi, I was diagnosed with MM on 12th December and have recently received my first 2 treatments. I am in the Canary Islands  where I have lived for the past 17yrs. I use the Spanish health system. On visiting my consultant prior to the 1st weekly treatment he told me because I was you ng at 67yrs old that he was placing me on an immunotherapy course of treatment and not chemotherapy. My plans are to continue this treatment until March when they will harvest my bone marrow then grow the good cells with the intention of having an SCT in June. There is a slight language problem he speaks good English and I can fill in with my spanish.he seems an excellent young consultant. All the staff in the day hospital are tremendous with various degrees of English spoken they make you feel special and after the 1st week all knew who I was my name where I was from etc from the receptionist to the nurses and doctors. I am on several drugs but some of them appear to be used for chemotherapy  so when on immunotherapy does a certain amount of chemo take place. After my 1st treatment I was sore,the pain is in my spine but had headaches and felt sick. However after my 2nd treatment all that has gone away at the moment. This article is only to introduce myself and I hope to post more relevant details later. Onwards and upwards, and how I feel at the moment couldn't be more positive.  In my position it is brilliant that I could join your forum, as I appreciate from my point of view details can get lost in translation .Thanks

  • Yes on a weekly basis before treatment, I wait for approx 90 minutes while they analyses blood, I go for breakfast in cafe, the get the treatment last week I was also given several anti sickness drugs before injection in stomach and arm.  Still feeling good

  • Hi Inspired Lad of Pelham,

    I was diagnosed with MM In June  23 like many of us by accident. I have been fortunate if possible in that my MRI showed one small lesion on L2 in my spine, I was offered to go on a RADAR trial which after 5 months failed me, I am now on DVD and showing promise after 3 cycles week 2, Got a phone call with stem cell transplant team on Monday from Aberdeen RI and am hoping to get provisional dates for harvest and transplant.

    I was full of anger at the cancellation of my harvest and transplant as i thought things were going well, It didn't help my wife booked a hotel in Edinburgh for 4 days as was told to allow 3 days for harvest. I had 5 days notice of the cancellation i was raging and still am, this worries me if it should happen again.

    I wish you well with your treatment in sunny Spain and i have to say a bit jealous as it is getting cold here now.

    Take care mate.

  • Hi, so infuriating, they give a date for a reason. I have just completed 3rd week of Daratumumab and Bortezomid injections. I had a PET scan 2 days ago and I hope my consultant can give me details on my visit next week. I have blood and a full 24hrs urine test every week which is analysed before treatment. Although my initial dates for harvesting were given as March I have no confirmation since. Hopefully the PET scan will assist.  Just feel extremely tired most of the time now and say tomorrow will be better.  Stick in the the harvest will happen it's just a blip.  But it's good to let your frustrations out.  Take care and keep positive 

  • Regretfully the tiredness and fatigue does not go in a hurry, I try to spread my day out but usually around 3pm thats me for the day, i will get some housework done as my good lady holds down a full time high profile job and we cannot afford for her to get unwell. Get a bit of exercise taking my dog for 3 to 4 mile walk most day. I am without doubt feeling a lot better since going on DVD and for the first time since diagnosis not needed a blood transfusion for anemia, had 15 units from June until mid December. Breathlessness is almost gone.Just pray now that the treatment continues to do its good work and numbers keep going in the right directions.

    Take Care 

    Steve

  • HI  to  both  Alamo and inspired lad of Pelham,   Like Alamo  mine was MM  diagnosed in June 23,      had 4 cycles of the DVTB   and last week  Stem  cell harvest,      transplant planned for   17/1/24       4 cycles of  treatment got my    Calcium levels   down from 34  to   12      not had any treatments now for 3-4 weeks,       hip pain and Nurepothay and my bug bears   now got a bit of a heart flutter,  which was not present before treatment started,    Fatigue by 3 pm  is the same for me,       and rest       Kevin   good luck to both  of you