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 Susan - Darz is really good, as the others have said. I had Darz+RVD. Darz with the Velcade shot was fine but Velcade by itself knocked me out for days (Thursday thru Sunday). I told my nurse if this is my new normal- Shoot me Now. I did get my Doc to let me take a low dose of Dex for Thursday to Sunday - it really boosted my energy. I normally only got it on Monday. I found it had to be very low dose. 1/2 to 1 mg and you have to ween off carefully. I started with 4mg, down graded to 2 mg and finally 1mg. They let me do this for six weeks. It took its toll on my muscles but it got me through a difficult time. My second Doc warned about long term use of Dex and that I should take something to counter it. I’ll find his notes and let you know. Ask your nurse and Doc for help - they’ll come up with something.
Don’t fret- they’ll find the right mix and take really good care of you.
I’ve started chatting with a woman who’s 21 years in remission. She’s local to me and had my Doc. Very old school - long before Revlimid and Velcade. Two transplants. Doing well and no ongoing Meds. If Docs can do that then, with all the new meds now, I’m sure you’ll be fine.
If you can - best time in the world to lean on relatives. They’ll be glad they chipped in.
If you think it’s going nowhere, reach out for a second opinion. I would not be where I am if I hadn’t. Could care less if anyone had hurt feelings - I was fighting for my life.
Hang in there - All the Best
I started Daralex in May of 2021 as part of a clinical trial along with 15 mg of Revlimid. Was taking Dara once per week when the trial started. It put my Kappa Light chain numbers into the low normal range after only one cycle. Don't be afraid Susan. There are so many great drugs out there now to treat us. Keep us posted on your progress. 🥰
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