Relapsed after Stem Cell

Hello Paul!

Unfortunately, MM is known to come back, even after SCT, after a couple of years. Were you on medications to prolong remission after your SCT? I understand it can be very stressful. Try to enjoy your life as much as possible. When is your next check-up? I hope you stay fine as long as possible. About the holiday, see if you could arrange it earlier, so that you don't have to worry about the treatment get in the way.

Hey Lizzie thanks for your reply

I knew MM was coming back but I must admit I was hoping for longer in remission. I was not on any drugs at all

I am on quarterly check ups now, my next phone chat is in May so I may know a bit more then but I suspect I will need to wait for another biopsy to get a clearer picture

I'm afraid that we can't actually bring the holiday forward but also the issue is we have no idea how long it will be before 2nd line treatments start, it could be weeks or it could be years

Hi Paul,

I understand you feel disappointed about having such sort remission period. It must be a shock. 

However, the fact that you were not given any medication to prolong the remission period was a faux pas from the doctors. I've heard that revlimid (not chemotherapy medicine) is the most preferred medication post STC. If I'm not mistaken, it recently got approved in the UK,but many abroad had been taking it since years ago.

So, when time comes after your second chemo treatmentnt (which I hope that it will be successful), discuss with your doctor for maintenance treatment so that your results last as long as possible. 

Keep strong,

Lizzie

Hi Paul,

My husband was diagnosed when he was 43 and relapsed there and half years after his first SCT he had a second in 2015 which lasted 2 years, both times he had some form of maintenance treatment. We have had several wait and see periods which are immensely stressful  but he now 10 years down the line and undertaking his fifth line of treatment.

My advice, don’t worry about where you might be in relation to treatment, plan and book your breaks so you have things to look forward to. If you wait to see where you are with treatments you may not plan or do anything. 

We have been to America, toured Canada, Cruising, motorbike tour around Europe and other less exciting holidays. We take advice from his consultant and travel depends on how he is feeling, to date we have not had to postpone or cancel anything because of treatment. 
We are now planning a tour around the UK and thinking about holidays further afield for 2022/23.

I hope you get some news about when you will start treatment but all the time you don’t need it, that’s a good thing take advantage of it. 

wishing you all the best, take care

Hey Dancer,

Thank you for your reply it's great to hear from people in the same situation.

Could I ask how your husband is doing physically? Has the Myeloma done any damage to his bones etc or is he still fully mobile?

Also, did you take out insurance for your trips for the Myeloma?

Hi,

Hubby has remained quite active but fatigue does get the better of him at times. This last twelve months he rebuilt an old Golf…albeit slowly and over the first Lockdown redesigned a d fitted a new bathroom…again slowly but he did it all.

He has spinal , rib and hip bone damage but that hasn’t directly affected mobility, more affect form side effects of drugs, he just needs to be mindful of it really and bigger things need some planning. He’s a lot slower than he was which he finds frustrating.

Travel insurance for Myeloma was not covered, however everything else was. As an example, on one of our America trips he got pneumonia which required hospital treatment..insurance paid for that. Our travel insurance is through our bank.

Hope you are remaining well