[zoliParticipant]

Hello MM friends,

This is my first posting on the Forum although I have found so much supportive information on here since my husband was diagnosed with Aggressive MM back in April. Once the initial diagnosis had sunk in, (I guess like many he thought his back, rib and shoulder pain was due to his 64 years and physical work so it took a while), he then began his first line of treatment which was VDT and we were encouraged by the subsequent blood tests showing everything was going to plan. Feeling optimistic he continued this line for 4 cycles of the planned 8 treatments until the dreaded numbness in the hands and feet set in. As this condition worsened over the weekend he was told to first stop the Velcade and then the Thalidomide as it was too risky. He then went onto his 2nd line of treatment which was Cyclophosphamide. Still feeling optimistic a timeframe for a Tandem SCT was discussed and as his PP levels were in the acceptable range it was all systems go. Then followed the pre-procedure routine Bone marrow test and blood tests which showed his levels had shot up again so it’s back to the drawing board as such.He’s now on his 3rd line which is Revlimid and Ninlaro. I can’t help feeling this is such a blow for him, (and us too of course), as we seem to be using up the designated life lines fast! The consultant and team are excellent although I can’t help feel there was more negativity this last time as he’s used up one of the valuable remission treatments already before his planned first SCR. This combined with the fact the numbness may well be another side effect deeming this treatment unsuitable, (I don’t want to jump the gun of course but we weren’t really prepared for the setback from the VDT), it’s really hard to feel positive just now. We won’t know for a long while if this new treatment is working and the transplant is still on the cards if it does. I’m desperate for some positive news from anyone who might have experienced a similar treatment plan so far.
Thanks for reading.
Jo

[shaun3Participant]

Hi Jo,

I’m so sorry to hear of your husband’s diagnosis. It takes some time to come to terms with – for all of you no doubt. I was diagnosed in Mar 18 aged 52 following a bad back plus a cold tht just wouldn’t go away. All very similar and common symptoms for MM. I had three lines of treatment before ASCT; VTD, IRD and Cyclophosphamide too. It took about a year for those treatments to get my paraproteins down to a level when I was able to undergo ASCT. ASCT was in May this year and I’m currently in Complete Remission about to undergo Allogeneic Stem Cell transplant this week.

I suffered a little with numb feet and hands (I’ve got a peripheral neuropathy in both my feet) but as time goes by the feeling comes back and affects me less. I worked throughout and can’t wait to get back to work again in a few months after recovering from Allo. I’ve remained very fit and active.

I’m no doctor but it seems like MM affects people in different ways and there’s no single way to treat it. I’ve read quite a lot and the accepted wisdom (from the USA mainly) is 4 rounds of VTD (or similar) followed by ASCT. But tht wasn’t my experience and I eventually achieved CR. There are new drugs coming online all the time so I’m sure they’ll find the right combination to bring your husband MM under control so tht he can undergo ASCT.

Wishing you both all the best Jo, stay positive and strong.

Shaun

[zoliParticipant]

Hi Shaun,

Thank you so much for taking the time to respond.It’s so helpful to hear the good news stories out there and it’s encouraging to know there’s plenty of hope. Like you he’s tried to remain fit and active and fortunately he’s also been able to continue working which has been a huge plus.
We both wish you every success with the Allo and a continued long and healthy remission.
Best wishes
Jo & Steve

[tmcintyreParticipant]

Hello,

My husband was diagnosed in December 2016 and followed the same route as your husband – 6 cycles of VTD which gave excellent blood results but bone marrow biopsy showed his levels were still the same., 2 cycles of Cyclophosphamide followed by Ninlaro and Revlimid which got him ready for SCT which he had in January 2018. After the recovery from SCT he was put back on Ninlaro as maintenance. Revlimid was not started again as he developed a rash at the end of his last cycle before SCT.

A few months ago he was told he was in complete remission. Unfortunately this month he was told that his light chains were rising again. His specialist nurse has been looking after him but the next appointment will be with the consultant to discuss the next course of action. His nurse has been saying something about a new analyser and everybody’s results showing higher levels so hey ho, we don’t know whats happening.

He does suffer with numb feet and slight tingling in his fingertips which can also be attributed to his Type 2 Diabetes which he was diagnosed with this year. He has put on a lot of weight and isn’t very active and its a bit of a battle to help him with his diet .

The latest results have pulled him down but on the upside his kidney/liver functions are all good and we are hopeful that a tweak in his treatment will help keep the light chains down.

Wishing you all the best,
Teresa

[zoliParticipant]

Hi Teresa,

Thanks so much for taking the time to share your husbands and your Myeloma journey. It’s really helpful when it comes to remaining positive to hear other people’s stories.
I understand too the challenge of battling to try and help with the diet, and sometimes it’s hard to know how to help.
Wishing you both all the very best and I hope we’ll be sharing plenty of positive updates in the coming months.
Best wishes
Jo & Steve

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