I had my transplant just over a year ago, am now in remission and doing well on lenalidomide maintenance. I’m back to a full and active life, including going to the gym three times a week. So first bit of advice is to hold onto the hope that life will return to normal!
The harvesting process wasn’t too bad. I got backache from the GCSF injections and bone ache seems quite common. I took a friend with me for the harvesting because you’re hooked up to the machine for quite a few hours and need to keep your arms still. So she helped me with my audio book, talked to me and fed me sandwiches!
People’s experience of the transplant itself are very different so the best advice is to take one day at a time and trust the staff because they know what they’re doing and will get you through it! My experience was not bad at all. I had 2 or 3 days of feeling pretty rough with sickness and diarrhoea but recovered quickly and my appetite returned before I came out of hospital. Coming home after hospital is the best feeling in the world and, whilst I was tired and needed to sleep more during the day, I didn’t feel ill.
In terms of remission time I think it depends on lots of factors and it’s difficult for them to say so i don’treally ask. My understanding was average 2 to 3 years but I was told that being on lenalidomide maintenance drug can give on average an extra two years of remission. I’m on a Facebook support group where there are examples of people getting much longer remission times. My consultant said he had 250 patients who were currently 5 years in remission and some who were 7 years. One lady on the support group was 18 years in remission without maintainance drug or further treatment, but I think she’s an exception rather than the rule!
I wish you well. I felt anxious too but many of my anxieties proved to be unfounded . I hope it’s the same for you.
Glennis x
