My Regimen is changing.
Starting Wednesday Darzalex Faspro and Kropolis IV infusion 30 minutes. No more oral meds as they stopped working. I feel scared, hopeful, sad and anxious.
I have Light Chain IgG Kappa Multiple Myeloma.
Please share your comments and side effects as well as how the medications helped to make the numbers go down how quickly. I know this is no easy fix. Two years in the process. Do you feel better taking the above mix. PS they are also adding me back to 20… read more
Susan, you are not alone in your plight! Have you joined The Lukemia Lymphoma Society? They have several programs to help people like us who need help getting to and from appointments. They also have monetary help for you. I have received some cards for transportation, gas cards and help money when things are getting tight! There are a number of good programs out there to help us! They also provide several programs to help in educating people about some drugs and their side effects! I am praying for your drugs their side effects and your downtime from work! Remember GOD knows what we need HE is able to look past what we see and help us monetarily! Remember to speak to HIM ! HE promises to never leave you or forsake you! Please, don’t be afraid to ask someone! Many people want to help they just don’t know how until they are asked!!!
I'm on dara, Revlimid, and dex. Dara monthly, Revlimid 21 days , 7 off. When I started in 2020 the dara was weekly, Revlimid 25 mg, dex 20mg. I plunged into remission in two months. I had some awful muscle spasms, which lessened as my dosages lowered. My current dosages are Revlimid 10 mg, and dex 12 mg (weekly). I also receive monthly injections of Neulasta. I take loratidine (Claritin) daily, partly for allergies and partly to combat spasms, which can be side effects of Revlimid, dexamethasone, or Neulasta. My key numbers have been "so low as to be almost immeasurable" according to my hematologist at Mayo.
There’s also methlyprednisolone at one fifth the strength of Dex but it may not be strong enough for the Induction phase. I was on it for a short period during maintenance but after 6 weeks I chose to discontinue it. No help and a few problems.
Hi Donna - No sure yet. I think they were in tandem. She went to a hospital in Kansas and stayed 3 months for her initial treatment. Returned to her home in Virginia to receive routine treatment from my Doc. We spoke for 45 minutes the other day to get to know a bit of each other’s story. From what I gathered, she not on any meds for many years and just gets annual checkups. I asked if she knew if her immune levels are normal - she guesses they are and plans to look up older Labs. I met with my Doc a few days ago and asked if my immune levels will return to normal now that I’m off meds - he doesn’t think so. It makes me wonder if the newer meds like Velcade and Revlimid are permanently destroying the immune system. I hope to learn a lot talking with her. She speaks at events about her experience to help others with MM. She hopes to learn plenty from me - we’re at both ends of the spectrum. I’ve been fortunate to seek out and use the latest meds and testing methods and I’ve questioned the “standard of care” to my benefit. My nurse is 30 years in oncology with my Doc. She felt she was advising me with my best interest in mind (to get my SCT now) but my choice to postpone gave Darz the time it needed to finish what it started. Also the three studies I read said C3 Curcumin (4g - 8g) was effective at killing MM. I’ve taken 4gram C3 Curcumin daily once I was diagnosed last Oct.