Light chain myeloma D-rd protocol. Anyone has experience on this?

Hi Carlos DBe546f0 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

I've searched the group to see if there are any previous posts which mention the MAIA protocol but drew a blank I'm afraid. Of course, that doesn't mean that nobody else here is on it, it could just be that they haven't posted about it yet.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Hi Carlos DBe546f0 

Thank you for sharing your experience. I just wanted to say I am sorry to hear about your recent diagnosis and wish you all the best with your treatment. 

I was diagnosed in October. Took 4 cycles of Dara VRd (Maia plus Velcade / Bortezomib). I am scheduled to have autologous SC transplant in March.

I recognise the symptoms you mention, particularly the Dexomethasone. It does get easier as you get to know the illness, the medicine and your body better. I hope the worst is already behind you.

The combination of the illness and the chemicals in your body can be quite tough on the mind. Remember to be compassionate with yourself and patient with those around you. Time expands when you are going through a traumatic experience like this, but others won’t experience it at the same intensity as you, no matter how much they care about you.

I hope everything goes well with the rest of your treatment.

Rooting for you…

Many thanks skipper for taking the time. It is quite a shock. For some reason the young one in oneself thinks one is immortal and death is something that happens to other people. This is a good catch up that the cycle of life is how naturally life spans. ️

Hi Carlos.

Like Skipper88, I had the same as you, plus Velcade / Bortezomib, back in 2023 (I have been in remission since then).

Dexamethazone is notorious for causing sleeplessness. I can suggest CBD oil to help reduce that, by squirting a few drops under the tongue before you go to bed. I still couldn't sleep so well for a night or two after the Dex, but it did make a difference for me.

I also had an erratic heartrate occasionally during treatment. This was especially unnerving as it was only a couple of years after being diagnosed with two heart conditions (both nothing to do with myeloma and I have been cured of one of them). The heart rate issue did settle down.

Lenalidomide can cause mood changes. That could be related to the obsessiveness that you mention. Alternatively, you have been through the shock of a myeloma diagnosis, and that can be enough to affect anyone's mental health!

I found that I became tearful in the evenings. It felt 'artificial', in that there was little/no emotion behind it, so I put it down as caused by Lenaldomide. My way of dealing with it was escapism, watching TV (specifically repeats of The Six Million Dollar Man ) or watching stand up comedians on Youtube.

All of this are memories from 2023. Since then, I have had everything from holidays, to family celevrations, to exercise, music concerts / festivals. In short, enjoying life.

I don't know if any of this helps, but please remember that you will get through this, and that you are not alone!

Hi Chicken, for sharing your experience! being myself approaching the end of the 2nd week I can sEE there is a pattern that I am already recognizing. I am taking 20gr weekly of dexa. I read that some centres reduce this to 12mg after a while. Did you have the same dosis all the treatment? The CBD oil is a v good tip. Thanks. Did you get it from the NHS? CD

Hi Carlos,

I had 20mg of Dex on chemo day and took another 20mg the following day (so twice each week). The dose stayed the same until remission. In remission, it was slowly reduced over the last couple of years. Even now, I get 4mg of it on the day (once every 4 weeks) that I get my Daratumumab injection.

On CBD oil, I buy a spray from Holland and Barrett called "Love Hemp" (this is not an ad for them ). I only learnt that it could help after about 8 months of getting by on next to no sleep (maybe 2-4 hours were typical at night plus a daytime nap). From the very first night, the sleep was blissful, except the first night or so after taking Dex (it still helped then but was less effective).

Thank you, wow, 40mg weekly sounds paramount. You must to be a young soul to endure that. I with 75-76 find dexa the hardest drug to cope with @ 20mg. Thank you for the H&B tip. Will certainly follow your advise. Stay well   W gratitude. Carlos

Carlos, you are right about my age: I am in my fifties. A bit young to get myeloma, although some on this forum have been diagnosed in their thirties ).

Plus side: yes, I can handle relatively tough treatment, though subject to a dodgy heart and low platelets. I have also bounced back in the sense that I do some pretty gruelling exercise again.

Minus side: I had to semi-retire, due to fatigue and brain fog. It has also been a lot for my family and I to go through. They have been so supportive. 

Thank you for sharing. Myself, I don’t seem to be handling well the cocktail. I was on my treatment day today and although they went ahead with the Dara infusion, had to have a bone marrow booster and suspend the lenalidomide till I have a F2F on Friday to tailor the doses. My neutrophils just were too low.

Yes, I remember the booster (G-CSF). My neutrophils were sometimes low (below 1.0). 

If you have taken some injections home to self-inject, don't forget to keep them in the fridge.