Thanks Stuart

Carol

Try try again!

Try again!

Hi Nicki

Yes SCT is a big decision, but I saw it as a gamble but one worth taking if you can be in remission and drug free for a few years. I know a patient at Ealing Hospital who managed 8 years from his first transplant, now wouldn’t that be fantastic? Really I had no choice but to do the SCT. 3 weeks after finishing CDT my paraprotein was…[Read more]

Hi Nicki…welcome!

I can’t help you with the Igm myeloma as I am iga lambda light chain which is also a more rare form of the disease. However I can give you hope. I am 15 days post stem cell transplant (SCT)and doing very well I feel. I am hoping for a long remission, but of course nothing is guaranteed in this process. I can say though if…[Read more]

Well done Richard! I came home last night- the doctors had a bit of a struggle ripping out the Hickman line and had to cut out the cuff in the end, so I have a stitch and am a bit sore. Now day 15 with very few restrictions on food…fruit and salad OK..no undercooked food, blue cheese, cold shellfish or takeaways. I have cooked and managed to…[Read more]

Hi Angela

I am home and happy, happy, happy!

Carol

Hi Angela

I wouldn’t rush to have Graham home just before he goes neutropenic, as they were my worst days with the oesophagus problems and diarrhoea!

I am going home today (day+14) right slap gang into the middle of London traffic with the tube strike.

Having said that it is now nearly 4pm and I have to have 1 hour of platelets before they rip…[Read more]

Forgot to mention the “dry mouth” issue also caused by mucositis….it is driving me crazy -oh and yesterday and this morning, my nose is dripping like a tap and my eyes watering. I think it is just my body’s attempt to start to repair the chemo damage, but it is annoying. It is sip,sip,sip endlessly and drip, drip, drip continuously…now you…[Read more]

Day +13 dawning! Everything is fine…no more mucositis in my oesophagus so I can drink and eat (not that I really want food). Neutrophils hit 1.2 yesterday after 2 Neupogen shots, so I am no longer neutropenic nor in isolation; still an occasional vomit but diarrhoea has cleared. Luckily I have had no infections, although an anticipated…[Read more]

Hi Liz and Kev

Well it is day +11 after transplant and I have had my 2nd growth hormone injection to shock my cheeky but shy new stem cells into action. Every day brings improvement now. I had a few rough days especially due to mucositis in my oesophagus….terribly painful but after all the ice debate I had no mouth sores so I believe the ice…[Read more]

Hi John

I completed CTD at end of October with high dose chemo for collection on 11 December and collection 23 December. Transplant was 22 January. But there was a delay in the transplant referral as the consultant was on holiday for 3 weeks and then of course Xmas intervened. I think it depends a lot on the availability of beds at your local…[Read more]

Bless you Eve, I do hope things work out but do go to seek that second opinion. I have read some miraculous stories on the Facebook Myeloma Support Group page from people who have had a second opinion, received new treatments and continue to thrive. Don’t give up hope!

Carol

Hi I read all of the research, but remain unconvinced about the curative properties of these.

Carol

I am 64 and in hospital at day 10 after stem cell transplant. I chose SCT as I hope to have some years of drug free remission, but it is a gamble…little is predictable in myeloma world.

After I completed 6 cycles of CDT successfully, it was only 3 weeks later that my paraprotein returned. If I didn’t do SCT I would have been moved straight…[Read more]

Hi David
How fabulous for you…I am so pleased…well done!

Carol

Thanks Tony….you give me hope! Today is day +10 after SCT and I am improving day by day. Today I received the first of 3 growth hormone injections that should kick start my stem cells. I am soooooo looking forward to a period off drugs. My goodness have they pumped me full of them these last few weeks? Of course you expect the melphalan…[Read more]

Hi John

You are on the standard NHS pathway as you weren’t randomised to receive Velcade through the trial. That pathway is CTD, which if successful puts you into the SCT line. Now I don’t know what happens if you refuse or delay the SCT, as I have elected to go straight to transplant and am now in Hammersmith Hospital London, 9 days post…[Read more]

Hi Jean

Still suffering through the side effects but they are manageable. Oesophagus slightly less painful today and I managed to eat ice cream his morning…first solids for 3 days! Seem to have conquered the diarrhoea finally with loperamide and dry retching is minimal. I have had 16 hours of saline IV and the threat of the antibiotic…[Read more]

Hi jean

I have just had an ultrasound and they tell me I have nodules on my thyroid and will refer me after SCT recovery….day +8 today and I am feeling rough! But I do wonder if the radiotherapy (10 sessions) I received for the centre of collarbone lesion may have started changes in the thyroid.

Carol