Treatment options

Hi Carlos DBe546f0 I see your post has as yet not had a reply but I am sure that some of the group members will pick up on it.

Hi  Carlos,     i think that  your treatment plan is quite new ?      i guess i followed the route of DVTB  and then Stem cell harvest and Transplant,   i hope that  the MM  can be   halted   and i need to go research myself as some of the treatments you list i have not come across,    stem Cell transplant  recovery  is a tough journey,   i   am now  68,  and 66 when  diagnosed,  and leading a good life,  and if your treatment can avoid Neuropothy,   then  that is great,   as its probably my only  bug bear post treatment,  and       damage to never endings through the aggressive treatment plan,  but sill very much worth it,   i am prescribed  Pregablin for the neuropothy and it works most of the time !           positive    attitude and good support networks helps   so much and may you knock   this AKA  Vespa !

Hi Carlos, 

I too have no real knowledge of the treatment you mention I'm afraid. 

Just to add that I was diagnosed in Jan 2020, aged 63, several rounds of DVTB chemo, and then a Stem cell transplant on August 2020. Been in remission since -  thank good ness.  The only lasting side effects for me are lack of stamina (could be age related too as I am now 68) and peripheral neuropathy which really can be a bugger at times. Night time worst , also prescribed pregablin, although it doesn't always work to keep it at bay. Like another reply you have had. 

So yes, if you can avoid the PN, somuch the better. Good luck.

Nigel 

May I ask what doseage of pregabalin you are on?  My GP has recently swapped to this for me from gabapentin. But it doesn't always work for me. I am on 50mg twice a day. Not sufficient I don't think?

Thanks, Nigel

Hi,

I have peripheral neuropathy in my feet even though I am in remission and the only 'chemo' that I am on is a maintenance injection of Daratumumab every 4 weeks. I suspect that the neuropathy is permanent.

Anyway, my doctor suggested vitamin B6. He proposed 150mg a day, which is an enormous dose. I researched, and more than that can be counterproductive (actually causing neuropathy) and can cause nausea. I therefore take 'only' 100mg, which is enough to do the job in my case.

You can get B6 from a health food store or chemist. It is a bit pricey (£15 - £20 a bottle) but you could ask your doctor to prescribe it if finances are tight.

Thank you Vespa and Nigel. Appreciated, Last time I was with the consultant, she recommended to consider start treatment and gave me a bunch of brochures about different combination of drugs. As mentioned my concern was the side-effects known as peripheral neuropathies I am 75 as mentioned, and read from the chat GPT.that as per my age, I am not eligible for transplant the best combination was the D-Rd (Daratumumab + Lenalidomide + Dexamethasone). These drugs are within the brochures that I was given so I’ll be able to to consult with the doctor whether I can undergo this one and what her opinion is about it

after my research I don’t think that it is a very new combination, rather that it is  for older guys like me.  Carlos

Hi. Nigel.   I am prescribed 2 x 50 mg per day     I take in the morning before dog walk.    And 2 about 3-4. Pm.     When it comes back with vengeance!      I was informed take more if the pain persists as I am no where near the maximum level.  So I do take two again just before bedtime. But not every day      Kkevin