[ukejParticipant]

I recovered well from my sct in March but in July I developed Shingles which was most unpleasant and knocked my energy levels right back. Apparently it is advisable to stay on Aciclovir in order to prevent viruses such as shingles getting a hold.
I started on 10mg lenalidomide in September and was fine for the first month, but then my appetite started to wane. I am 2 weeks into my 3rd cycle and have had to stop taking it as I have no appetite at all, my heartrate has increased and I am breathless at the slightest effort. Before lenalidomide, I was enjoying long walks and had started swimming again. I am waiting for a call from my consultant to see if he has any suggestions but,for me, quality of life is a priority.
Has anyone else experienced these problems and are there any alternatives to lenalidomide?

[ukejParticipant]

I had my SCT in March and will be starting on 10mg Lenalidomide next week. I have recovered well post transplant so have been feeling a bit apprehensive about starting on the Lenalidomide. My consultant told me that it would be an ongoing treatment .There was no mention of it ever being changed. It is reassuring to know that the drug is well tolerated. Thank you. I am interested to know the experiences of others who are on Lenalidomide.

[ukejParticipant]

I had my stem cells harvested, although only enough for one transplant as the pre harvesting procedure has been changed to only 5 days of growth hormones.
I am now waiting for a transplant date.
However, since before my last cycle of conditioning chemotherapy ,which finished over two months ago, my paraprotein levels have been so low that they are not measurable. I assume this means I am in remission although no one has said this to me.
My dilemma is a) do I go ahead with the transplant or delay until my paraprotein levels begin to rise?
and b) should I be concerned that they have only harvested enough cells for one transplant?
I am due to speak to my consultant next week and would welcome any suggestions/questions I should ask him.

ukeJ

[ukejParticipant]

Thank you Mulberry, that’s very helpful. I’ve spoken to my consultant today and, unfortunately, he informed me that because of Covid there is a long waiting list for harvesting and transplants as these have been suspended and there is no timescale for their resumption. He told me that once my current cycle of chemotherapy has finished I will then be monitored every 6 weeks to keep an ‘eye on’ paraprotein levels. If they start to go up I’ll be given another course of chemotherapy. There are several of us in this position at my local hospital so it is likely I’ll be waiting a very long time as the capacity at St James’s, Leeds for SCT’s is limited. It seems that the NHS is not really working for people in our situation.

[ukejParticipant]

I’m a 71 year old female who was fit and active prior to diagnosis and chemotherapy. I was considered suitable for a transplant and referred to St James Hospital, Leeds. I have had excellent treatment at my local hospital and my consultant told me yesterday that I have had an ‘excellent response’ to the chemotherapy cycles so have just started my last one (7). I have been referred for harvesting of my stem cells but am concerned that because Leeds suspended treatment during the first and current lockdown, my harvesting might be delayed. Does anyone out there know how long harvesting can be delayed after the end of the last cycle? I am really anxious to get on with it now that I know I have met the criteria. Is anyone else having this problem?

[Author]

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