Revlimid beginning to fail?

[Nancy Bartholomew]

Hi everyone, I’m hoping someone out there can help set my mind at ease or at least tell me their experience with Revlimid. I was diagnosed in 2016 with MDS del5q, low risk, at the age of 62. I was on a wait and watch for a couple of years until my Hgb dropped below 10 and my hematologist at that time, said it was time to begin treatment. Revlimid is the protocol for my diagnosis. I was put on 10 mg for 21 days, with 7 days off. My body responded very well to the drug and after a couple of months my CBC had improved. The side effects were extreme gastrointestinal issues which really limited my ability to go out in fear of having an urgent incident away from home. Also, my sleep was very disrupted and suffered from night time leg cramps. I also bruise very easily. After being on the 10 mg for about 8 months the side effects became so severe that my doctor lowered me to 5 mg on the same dosing cycle. Fortunately, my blood work was stable and that was an option. The 5 mg dose was much more tolerable, but still has some gastrointestinal issues which have been helped by taking Holigos (a probiotic) and collagen in a smoothie daily. A year ago I was assigned a new hematologist/oncologist. After 16 months on this 5 mg dose my numbers have begun to slide for the past 3 months. I am beginning to feel tired and winded all of the time now as I watch my Hgb drop. I went in for an appointment the beginning of December and my doctor put me on a different regimen: 21 days on and 2 weeks off. On the 28th of this month I go for my first blood work on this regimen, so hoping I have stabilized or if given a miracle, that levels actually improve. I am so confused because I thought I would be put back on the 10 mg, but my doctor said that would make me worse.??? He wants me to try this for a couple of months and if there is no progress he wants me to have another bone marrow biopsy. He said he would be looking for progression of the disease to acute leukemia. Of course this has me terrified! I’m wondering if any of you have encountered my scenario before? I am praying that I am experiencing a hiccup and not a progression. Just wondering if doctor is jumping the gun…if there could be another alternative for me. I ask a lot of questions when I am in for a visit and I am not sure he appreciates my research. He told me that it seems like I have a lot of anxiety about this, and I said of course I do, it’s my life! I am with Kaiser, so I am not sure if I can have another opinion. I would appreciate anyone that has anything to offer to my situation. I truly have been blessed for all of the time on Revlimid when I felt almost like a normal healthy person! And I also have never had a transfusion. Of course our minds tend to run to the worse case scenario…. but I am really wondering where I am headed.

[Kevin Dugan]

I have had very good results with retuximab with no side effects. Ask your doctor about it.

[Nancy Bartholomew]

Thanks for responding Kevin! Are you diagnosed with MDS 5q also? I will look into and ask about retuximab….

[Tom Nelson]

I am also del5q. Diagnosed by Bmb. 77 years old, diagnosed 3+ years ago when Hg dropped below 10. Went on Revlimid 5Mg, 21 on and 7 off. After 1 1/2 months developed a rash and had to stop. Revlimid seemed to work and HG stayed above 10 for about 3 months. Have now been on Aranesp for 2+ years. Was getting a monthly injection when the hg went below 10. Have now progressed (regressed) to an injection every 2 weeks and the hg is averaging 9.2. Have maintained same level of tiredness for past 3 years. Blood/oxygen level is still good at 96/97. Have not had to have an infusion. Lowest hg was 8.2 after a cut/bleed out a year ago. Am leading an almost normal life.

• This reply was modified 3 years, 4 months ago by Tom Nelson.

[Kathy Stermer]

I am 62yo diagnosed in 2018 with del 5q and took Revlimid for a year with dose adjustments made due to changes in labs but never received any benefits from taking it. Bone marrow biopsies done periodically showed disease progression and was switched to Vidaza which also had zero effects after 6 months. A biopsy and being treated at a Center of Excellence is the best way to navigate this disease. I have been off all treatment for 15 months due to any viable options (clinical trial or transplant neither of which I want due to poor odds and extended time in hospital) so have had good quality just being transfusion dependent treating symptoms of fatigue every few weeks. Some have stabilization with treatments but disease progression is almost inevitable unfortunately. A biopsy is your best bet to see where things are.

[Kevin Dugan]

Yes I am. Revlimad did not help me. I developed AIHA. Then retuximab brought my levels back up above 11. No transfusions in over a year.

[Nancy Bartholomew]

Thanks Kathy, Tom and Kevin for responding. I am hopeful that there will be another treatment for me if the Revlimid is losing it’s efficacy. I guess I was just shocked hearing about the possible progression to AML. When I was first diagnosed 4 years ago the doctor told me since I was considered low risk, that my chances of progression to that were very slight. My husband and I are at a point where we were going to make some changes, like moving to a Del Webb. Since I don’t know where my health is headed, I guess we will stay put. I don’t like the idea of putting my life on hold, but maybe we should stick with the known at this point. Have you had to put some of your dreams on hold? If so, how do you psychologically reckon with it? Also, do you have any secrets for dealing with the constant fatigue?

[Kathy Stermer]

This disease can throw all sorts of curveballs at ya. No two people follow the same course. As my disease has progressed (given 6months 7 months ago), am still living each and every day to the fullest depending on how I feel. Every few weeks when I’m close to needing blood I go and get checked and get tanked up. The fatigue comes with the lower hgb and I’ve just learned to listen to my body and kick back when need be. Some things I can’t do anymore due to fatigue or because my plts are now in mid 20’s (no contact spots for me)I’m just thankful for all the times I did enjoy doing those things. As I’m just coasting at this time, whenever I fret about something, my doc reassures me and says, just continue to live your life as you’ve been doing. I’ve chosen a path of “just being” and so far working out ok. Knowing the shoe will drop one of these days but at least I’ve had time to prepare. Peace and best of luck to all dealing with this disease.

[californiagirl]

Hi Nancy, Sorry I’m so late to add to this question. I’ve been on Revlimid (5 mg, everyday) since 2015 for 5Q as well. I had the same severe side effects as you but was able to stay on the medication w/o lowering the dose or stopping. Revlimid can cause bile salt malabsorption that responds to bile salt sequestrants that allowed me to continue treatment. I had an immediate response to the Revlimid within the first 2 weeks and have been in the low normal range since. I also had an immediate response to the bile salt sequestrants within one day. This past year I’ve noticed my RBCs slowly dropping and was anxious, but the MD didn’t seem to be. He kept telling me everything is in the normal range. I go see him in a week and I’m hoping that the tests will show it’s gone up. I remain active, golf 1-3 x/week, and keep up with the grandkids. I stay busy and try not to think about it. There are times when I get a little depressed, but I try to stay positive and live out each day the best I can. Best of luck to you.

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