In response to the first comment -

“HOWEVER, I don’t want want to urge people to not take maintenance meds …”,

I believe the above is Old News and I Do Want to Urge People to Get Off Maintenance Meds - If and Only If - When You Qualify.

Here’s the deal - Search for the ASH 2022 Presentation “MRD2STOP” and give the Video a view. The gist is “Get Off these MM Meds Once a Person Reaches MRD Negative”. They currently recommend Negative for two years prior to Stopping but Stopping is the Goal.

There’s also the MRD-SURE Case Study that came to the same determination. Additionally, see the Video from Dr Costa - “What to Do with MRD Results” (posted to HealthTree.org).

All of these have determined that long term use of MM Meds can have detrimental effects and once a person is MRD Negative, based on the clonoSEQ testing method, it is better to get off MM Maintenance Meds (when you qualify).

All the Best

I’m on darzalex fast pro maintenance since my stem cell dex steroids so far seems to be working my numbers are down and my dr said some have taken it long term

Hi Kim - Sorry but there’s no replacement to clonoSEQ and not all Docs are setup to use their services.

clonoSEQ is the only FDA Approved Next Generation Sequencing to analyze the genetics of a person’s cancer. It’s the only testing method that is accurate to 10 -6. That’s no cancer per million cells tested. The previous testing methods are only accurate to 10 -5 (none per 100,000 cells tested). Also the previous methods do not map your cancer’s specific genetics.

There’s an Article on this Forum that explains these very well and is easy to read. This is how I learnt about these testing methods.

Years past, people were deemed to be in remission and yet still had relapses. It’s now understood that the previous testing methods were not accurate enough and that the cancer cells that remained were not being measured.

Simply find a Doc that can test via clonoSEQ.

Yes , with Pomalyst and Revlimid I would feel great on my seven day break. Then as my cycle began I would slowly get worse every day and by the end of the 21 day cycle I would feel like crap. I have started taking Panacure C and a cbd oil with Frankensense and my side effects of the Promalyst have all but disappeared, my blood work is completely normal and I feel great. If you are interested in this treatment plan look up mycancerstoryrocks.com . There are some pretty amazing stories there.

Thank you again. I have my second opinion coming up. I hope they know about clonoSEQ if not I hope there is a similar test that can be used