[spectralisParticipant]

I have multiple myeloma. I was diagnosed at the end of 2022. After having 5 cycles of chemo I relapsed a few months later. I then had two more cycles of chemo and then a stem cell transplant in November 2022.
I’m still waiting to begin either maintenance or systemic chemo. I could not begin maintenance chemo 100 days after the transplant because I developed two pulmonary embolisms.
The full body PET scan post transplant showed that my tumours had healed apart from a tiny suspect area in my leg. It was due to be biopsied but the CT scanner couldn’t find it so the biopsy couldn’t go ahead.
I’m now in limbo waiting for an MRI on my legs to see if the cancer has returned. It’s nearly six months since the transplant and I’m besides myself with worry. I just want to get on with treatment if it’s necessary.
What can I do to help the process along?

[davidainsdaleParticipant]

Hello spectralis

Sorry that you have felt the need to post on this forum and that you’ve not had a response.

I’m a support group leader here in the North West so have met quite a few myeloma patients over the years.

I’m no expert but I think that not everyone automatically goes on maintenance after a stem cell transplant.There could be a number of possible reasons. I had mine in 2014 and was drug free for five years. The maintenance regime seems to depend on whether you are part of trial or which induction treatment you had before SCT.

If you have responded very well to the SCT and your myeloma levels are very low this might be another reason why you are not on maintanance.

In any csse, I would have expected your consultant or Clinical Nurse Specialist to have explained all this to you. Similarly you should be having regular follow up appointments to monitor your bloods. It may be worth taking someone along with you at your next appointment for some support.

If you can’t get any satisfaction you could always ask for a second opinion.

Hope this helps.

David

[briggs-family1974gmail-comParticipant]

My husband just had sct (day22) and has had consultant appointment today. He’s being told he will go onto maintenance treatment after 100 days , nothing was mentioned about delaying it if numbers were still low. Is this an option as he would really love to be treatment free if that was possible
Which is why I’ve responded to your post here ?
We’re sort of in limbo atm too as he’s been told nothing of what’s to come or what to expect
Sort of expected more information during this visit but nothing of any importance was discussed.

[anne1Participant]

Hi

As I understand it (I may be wrong though!), maintenance post SCT is taking a daily tablet called Lenalidomide. It hasn’t always been given so it’s quite new and gives improved remission time. The haematology nurse called it Thalidomide’s ‘big brother’ as it’s the next generation. It still means people who take it are fairly immunosuppressived so have to be careful in terms of busy indoor places or being close to coughs and colds. Not sure if bloods need to be monitored, but let’s face it, can’t go near haematology without blood tests tbh!

Delighted your husband is on Day 22. I’m still going through assessment for eligibility for SCT and full of questions every time having treatment at hospital! The above, therefore is based on my queries rather than experience.

Thanks

Anne

[spectralisParticipant]

Thanks for all your replies. The plan was to start Lenalidomide 100 days post SCT but I developed two pulmonary embolisms a few weeks beforehand. So the Haematology Team decided to delay due to the risk of further blood clotting.
Subsequently I had two full body scans because I have non-secreting myeloma (doesn’t show up in blood tests) and a tendancy towards plasmacytomas in my soft tissue.
The MRI and PET scans showed that my tumours/lesions were healing well. But the PET scan showed a tiny, suspect area in my tibia. A CT biopsy a month later was unable to go ahead because the surgeon couldn’t find the suspect spot. It might possibly have been a cyst rather than myeloma but I doubt that knowing my luck.
Tomorrow I see the doctor and hope to find out what the plan is going forward.
I’m trying to find out as much as I can about my treatment options and I urge others to do the same. Don’t wait for your appointment if you have any concerns. Trust your own body and judgement regarding warning signs. Better to be safe than sorry.

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