My oncologlogist has had me on Revlimid 25mg (7days on, 7 days off), dexamethasone 20mg and Velcade injections every two weeks. I am curious if anybody else is on all three. I spend 6 months in Illinois and 6 months in FL. My FL oncologist seems to think all three is a little unusual but is reluctant to overrule the Illinois oncologist. I went through a successful stem cell transplant 9 years ago and was considered to be in a higher risk staging rating at the time. Would love to hear anybody in⌠read more
Hi I received 6 months of quad induction therapy RVD+D and reached full response remission Oct 2023. Now on 1 shot per month of Daratubamab maintenance. So far so good đ
Don,
Wow your maintenance is the same as my initial treatment, except my velcade was an infusion, 1st weekly, then after several months, bi weekly then once a month. Revlimid was a lower dose than yours, cut back initially because I had a bad reaction the first several doses.
Then an SCT after 8 months of infusions.
I am in remission with no detectable disease after a bone marrow biopsy 3 months after the SCT. I had Daralex fast pro injections along with the Dex steroid for one year, monthly for maintenance.
Then in October of 2023 I was given a drug holiday. Iâm still on it and my blood is checked every 3 months. I asked my oncologist/hematologist in October if he was putting me back on maintenance just to keep it tamped down and he said no not unless I show signs of relapse.
This disease is the cause of 2 severely broken/shattered upper arms, both my femurs were very weakened before this was found also. I never knew I had this until I broke my arms in a fall. I was 65 and thought I was doing well in spite of two artificial knees, one artificial hip and severe arthritis and pain issues since I was in my late 30-s. I worked hard most of my life.
Now I have severe neuropathy from the velcade and revlimid, I hurt but I love God for giving me more time. I love my family. I walk most days and can do a lot on a work bench still even though my legs and arms hurt. Iâve modified my diet too as sugar free and low carb as I can get it. I still drink an occasional beer but do not drink hard alcohol anymore since my transplant. The funny thing is I had one or two shots of whiskey and water all throughout my chemo period. I told the doctor and he said as long as youâre moderate. I have modified since the transplant to a glass of wine most evenings. I take a long list of supplements including curcumin 4 grams, D3, garlic, magnesium, cranberry and others. My prescriptions are just mobic, omezerole, gabapentin and bystolic for BP control.
I get the light chain bloodwork done every 2 months and they are in the normal range.
I have not relapsed. I had my Sct done 9 years ago. This is a maintenance program they have me on to keep me in remission. My oncologist says I have Trisomy11, monosomy13 with deletion of P53 witch apparently puts me in a higher risk category.
My maintenance is 10mg Revlimid 21 on 7 off. Daratumumab (Darzalex FasPro) monthly injection and 15 mg monthly of Dexamethasone. I took Velcade during the 16 week indoctrination period every week with the above.
After the ASCT Iâm in âremissionâ and MRD negative.
I donât know why some people get monthly Dara and some people get monthly Velcade. Perhaps itâs the kind and risk one has. I had IgG Kappa light chain. Now the doctors say all of my chromosomes have repaired themselves (no additions, no deletions, no translocations).
So weâre hoping to be in remission for 8 years (lol) as long as this keeps working.
I wouldnât override any regimen now if itâs working. Youâre lucky youâre a snowbird. Looks like we in Philadelphia are going to get whacked with 3 snow storms in the next 2 weeks totaling 23 +/- inches. Oh boy!