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Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
I was diagnosed with myeloma this time last year at the age of 33. I have undergone radiation to attack the two masses that developed around two vertebrae, ova harvesting, 5 cycles VRD, spinal surgery, auto stem cell transplant and now I’m no maintenance chemotherapy revlamid. I am so far in remission. I would like to get in touch with people who were diagnosed with myeloma in their 30s or younger to share experiences of treatment, remission and relapse. How can I do this?
Welcome to this corner of the forum. We have a range of members on the site, although as I’m sure you are aware, diagnosis under the age of 40 is extremely rare. I was 36 when diagnosed (now 41) and I am aware of a couple of people diagnosed in their 30s and one in their 20s who infrequently come on this site. I think it is a tough diagnosis when the average age of onset is 70 because a lot of the literature and support is tailored to an older population. On the plus side though, I did find that, as an unusual case, I did seem to get special attention from the doctors and nurses - not sure if you had the same?Anyway, welcome to the forum, and I hope you feel free to share your experiences here. Just so that you know, there is also a diagnosed at a young age part of the forum Diagnosed at a young age, which you might want to try, although it is for all cancers, not just myeloma.
All the best
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Thanks Greg for your reply.
I am very well looked after both here in Malta, my home country and in the UK where I went for the bone marrow transplant. I am extremely grateful for their support. Given the covid situation at the moment I am in touch with my Maltese consultant via email.
I have outlined my experience with myeloma so far in my profile and am available for anyone who would like to ask me anything about it. I do not mind talking about it
I do have two points I wanted to ask the younger readers of this group:
Firstly, have you been able to achieve remission? If so how are you getting along? Are you taking maintenance chemotherapy, lenalidomide/revlamid?
Secondly, to both the men and women who have undergone chemotherapy and maybe also a bone marrow transplant as a result of myeloma, did this effect your fertility? I am currently post menopausal and just started hormone replacement therapy. I am wondering/hoping that this is just a phase since its been 5 months since the transplant. It would be great to have other people's experience in this regard.
Take care and stay safe everyone
I achieved remission following induction therapy and then had a tandem transplant to consolidate it. Maintenance therapy is not routinely given in the UK so I have been treatment free for over 4 years now. I can’t comment on the fertility question unfortunately. I already had 3 young kids when diagnosed and we’d made the decision to stop there. I really hope someone will be along soon with some more knowledge in this area.
That’s great Greg and encouraging to hear of people in remission. I’d like to hear of my such cases.
In terms of fertility, my husband and I would have liked to have children but so far it seems unlikely given I’m post menopausal. Prior to induction chemotherapy I underwent process of ova harvesting and 2 eggs were successfully harvested so odds are not in my favour. Maybe someone else in the group has feedback in this regard.
Stay safe Greg and thanks for the support you offer on the Macmillan community groups.
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