Myeloma

Hello people....  I have myeloma and am on session 5 of Velcade as, after consultation with my myeloma specialist,  decided not to have a stem cell transplant.  I wonder if anyone is in a similar position and how they are  getting on with their treatment.  

  • Hi Ushella, I was diagnosed with myeloma in October 2016 and started chemo immediately. I was on CTD, 6 cycles of induction, which finished in Feb 17. I'd said to my consultant that I didn't think I could handle an transplant quite early on and it was never mentioned again.

    I was one of the lucky 13% who achieved complete remission after induction.

    Because I had a fist-sized plasmacytoma in the left pelvis, I had 10 days of radiotherapy. Finished that in March 17.

    During chemo, I was very ill, unable to even wash my face, I had so little energy. Chemo itself wasn't too bad, except for swollen legs and feet and extreme fatigue but for the last 2 cycles the effort of it all became onerous. I also got peripheral neuropathy which still affects my feet and legs, to the extent that I'm still on slow-release morphine. I also have to take additional oral morphine sometimes because they often feel worse at night.

    In June 17 I was rushed to A&E because of abdominal problems where I became incontinent (bowel). Had to have emergency surgery with only a 65% chance of waking up due to sepsis. My sigmoid colon had died and had to be removed and I'm left with a stoma and a fistula, basically 2 stomas, and have to wear 2 bags. The apparent cause of all this was radiation colitis, a known side-effect of radiotherapy to the pelvis.

    About a month ago I had to have the stoma re-done as it was closing over due to scar tissue. Unfortunately this seems to be happening again and I'm seeing the surgeon on Friday. I have to try and keep it open until then which means dilating it daily.

    Have blood tests on Thursday prior to my monthly infusion of biphosphonates. Blood tests will also tell me if I'm still in remission.

    That's all I can think of for now. I'm not able to comment re your specific induction regimen but if you've any questions about anything else I'll try to help.

     

    Best Regards

    Taff

  • Thank you so much for replying. You have had such a rough time, I cannot imagine what you have been through. I shall be thinking about you on Thursday & hoping remission is still in sight. My journey is somewhat less harrowing. I've suffered with backache since falling backwards down the stairs in 2009. X-rays revealed all ok so I didn't think anything of it. Last year it grew worse - I had to sit down after walking for 20 mins or so. Anyway, whilst on a cruise in January, my back went into spasm. I recovered a day later but had backache when being in the same position for any length of time. Then I got ill and was admitted to the cruise ship's hospital with pneumonia and influenza. Discharged after 5 days. This holiday was supposed to be a holiday of a lifetime - cruise for 2 months ending up in Australia. The 23-hour flight back to the UK was horrendous. Upon return, to the doctor who prescribed painkillers. Many more visits ensued - morphine was prescribed & and MRI. It was the radiologist who indicated Myeloma could be a possibility since I had 7 fractured vertebrae. My GP referred me to hospital under the 2-week referral scheme and I was diagnosed in June this year. i arrived home that afternoon and 15 minutes later received a phone call requesting I go into hospital immediately as my kidneys were only working at 4%. To say I was stunned would be an understatement! I was in hospital for 4 weeks, had 3 x dialysis, swollen body, couldn't get out of bed unaided etc etc. Upon discharge I continued chemo at home. The reason I didn't go for stem cell was due to my age plus the back problem which continues to this day. My consultant validated my decision but said if I really wanted it, she would not oppose . Yesterday I was informed my paraproteins are now so negligible that they cannot be recorded - good news. Kidneys now ok - good news. Light chains not so good news - but I've yet to get my head around exactly what they are. Google my next step! My treatment has been exemplary - the outreach service for chemo and bone strengthening Zometa is marvellous - so much better than traipsing to hospital every time. I am feeling very positive at the moment which is why I'm responding now - I know tomorrow will bring sickness and fatigue as it's always the day after that side effects kick in. Still - I'm still on Planet Earth and will weather whatever comes my way. Once again, thank you for sharing your story. Kind wishes Ushella [not my real name!!!]
  • I was lucky kidney-wise. I've never been a drinker of water and when my kidney markers showed a problem starting I received fluids in hozzy and started becoming a water drinker. Function quickly returned to normal. I still struggle to drink but manage aboutt 2 litres a day plus coffees and soups. Have to especially careful with hydration with having stomas.

     

    Regards

    Taff