[spruce1954Participant]

I have Multiple Myeloma and have just relapsed, it has been 12 years since diagnosis, initially in 2008 I had 6 months of Thalidomide, Cyclophospamide and Dexamethasone, I then had a Stem Cell Transplant in 2009 which I came out of with a Very Good Partial remission. Once my body had recovered I was then put onto Thalidomide maintenance for 12 months and I have been in remission from then until today.

I have now been offered a combination therapy of Lenalidomide, Ixazomib and Dexamethasone. Is there anyone that has been taking this combination that could give me some idea of how they felt while taking it, the possible side effects and the outcome regarding remission. The consultant has sent me some paperwork to read on the combination, but I always like to hear about it from people who have taken it.

Many Thanks

Sue xxx

[susieParticipant]

Hi Sue
I am just about to start cycle 25 of RID and I have to say it hasn’t been too bad. The days I take the ixazomib I sometimes feel a bit yuk but nothing too bad.
If it wasn’t for this virus I’d be living a pretty normal life. It’s kept my myeloma under control and long may that continue.
I wish you the best, hope this treatment does well for you.
susie

[spruce1954Participant]

Thanks Susie, That’s a big help. I hope it works at well as it has done for you, fingers crossed xx

[janwParticipant]

Hi Sue

You certainly achieved a terrific period of remission following your Sct and a year of Thalidomide. I was diagnosed in 2010 and had my first Sct after 4 cycles of CDT and fortunately managed to achieve 5 years of remission. The second Sct in 2016 only gave me 18 months of remission, but then I started IRD in May 2018 which I’ve been taking for the last 30 months. It’s all tablet based which is good news with the current Covid issues and only requires a monthly trip to hospital for blood tests which are followed up by a telephone consultation with your consultant. Initially the doses for each 28 day cycle are usually 4mg of Ixazomib once weekly for 3 weeks, 25mg of Revlimid each day for 21 days and 40 mg of Dex taken once every week for each 4 weeks of the cycle. The doses are regularly reviewed as you proceed along the treatment with adjustments being made by your consultant when required.

My light chains were 3000 when I commenced IRD and they slowly reduced over a period of a year before becoming fairly consistent since then at around 20 – 30, which is much lower than my results following my 2 Scts. Initially I had quite bad nausea and vomiting during the first few cycles, but chemotherapy does tend to cause me nausea. Ixazomib can cause nausea for a day or more, but with me it’s 4 – 5 days of nausea after each Ixazomib tablet. However once the team found an effective anti nausea drug thankfully this is no longer a problem. The 25mg of Revlimid caused me fatigue, but this eased once my light chain levels were decreasing and my consultant felt the dose could be gradually reduced to 10mg. However 40mg of Dex per week was a nightmare for sleep, emotional upset and the usual crash after the boost in energy for a few days. When reduced to 20mg this helped and again when reduced to 10mg the side effects were much less and now that I’m on 4mg of weekly Dex this is fine with only one sleepless night per week. The other usual side effects for some people can be low platelet levels, reduced neutrophil levels and gastrointestinal issues. My platelets have dropped from my usual 160 level to around 60 to 80 and my neutrophils below 1. I take weekly Gcsf injections to boost the neutrophils and help the platelet levels which has worked well. For the first year I was badly constipated requiring laxatives and stool softeners, however now I suffer with no warning diarrhoea mainly during the 2nd and 3rd week of each cycle.

The first 6 to 9 months were the hardest for me when the doses of the drugs were at their highest and the side effects were difficult to cope with, however once my light chains continually reduced to a low level and the doses of the drugs gradually reduced then the treatment has been much easier to cope with. It’s the first time my myeloma levels have been consistently low, even after my two Scts my light chains gradually increased throughout my periods of remission. I still struggle with peripheral neuropathy (PN) in my right leg, but this was due to Velcade prior to my 2nd Sct. The IRD hasn’t increased the PN, but where the pain is located in my toes and foot, rather than up the calf. I still need plenty of tog rated socks, hot baths, hot water bottles, etc during the colder days/cold months.

I hope IRD works well for you.

Jan

[aburke53Participant]

I posted this very question about a year ago but go no response so I’m glad to see it here again.

I am 67 and had 6 months of Thalidomide, Cyclophospamide and Dexamethason and then a Stem Cell transplant in 2007. Then Vrlcaide, Cyclophospamide and Dexamethason and a second Stem Cell transplant in 2013. Both proved difficult to recover from but I managed to get back to a pretty good level of health and fitness and resumed a fairly active life style including hiking, gym, cricket, badminton and cycling so I Know I have been lucky.

In Jan 2019 I relapsed again and was put non a combination of Lenalidomide, Ixazumib and the dreaded Dexamethasome for six months. Blood counts recovered and all other tests seemed good. 6 months of Dex definitely made me feel very ill and I was not sleeping at all for 4/5 nights after taking it.

Since Sept 2019 I’ve just been on the Lenalidomide and Ixazomib which I am tolerating well and feel pretty good and was back playing badminton and back in the gym until COVID. I can see that I am operating at about 50% from before.

Does anyone have any idea how effective, long term, the treatment is without the Dex? How long can I expect this treatment to work for? Any help will be much appreciated.

[spruce1954Participant]

Thank you so much for the feedback on my upcoming treatment regime and your experiences, it does look like it is going to be a trying time to say the least. It seems as usual people are reacting differently to the regime, I just hope I will be able to find a happy medium.

[piersdudgeonParticipant]

Interesting forum. 18 months after receiving Thalidomide, Velcade and Dexamethasone treatment my wife has relapsed and been given the choice by her NHS consultant for 2nd-line treatment of either DVD (Daratumumab/Velcade/Dexamethasone) or Isatuximab/Lenalidomide/Dexamethasone. There are various things to consider in making the choice, but one major concern is not to let her choice now limit her choice for subsequent treatments after relapse. Be very grateful if anyone has any views?? She has been told that she won’t be allowed DVD after ILD, but may be allowed Daratumumab on its own.

These things seem to be in constant review, but it is difficult to make the decision without the experience that would inform it.

[aburke53Participant]

I have no experience of the DVD combination so I can’t really comment. The ILD, and now just IL, still seems to be working for me. However, you will have heard many, many times that we are all different and that our myeloma illness and individual reaction to drug regimes is all very personal and specific to each individual. I can see why it is such a difficult decision to make. I’ve always asked for guidance from the medical team and put my trust in them. Hope it goes well for you.

[piersdudgeonParticipant]

This is useful, thanks. There’s much written about the DVD experience, and you confirm what I hear elsewhere that ILD/IL is a good longterm option. If my wife can get over the COVID risk and take the DVD option first, which involves multiple hospital visits, then follow it with ILD when necessary, she’ll probably have the best that’s available right now. Her decision! Thanks again.

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