secondary cancer due to Rivlimid

[luke letourneau]

I have mds with -5q.I’ve been on Revlimid for two and a half years with great success and blood work looks good. I recently developed a small non aggressive spot of lung cancer and Squamous Cell Carinoma on two places on my Body. Does anyone have an experience with Rivlimid causing secondary cancers that can form as a side effect from the Revlimid.

Luke

[stacey]

Hi Luke,
I have MDS 5q- and have been on Revlimid, mostly 5 mg, since 2004. Since then, I have had papillary thyroid cancer (approx. around 2011) and had one mole removed awhile ago from my back which I think was basal type. Sorry to hear about your secondary cancers as well. I am thankful that Revlimid has worked really well for my blood levels over all these years, but it was not without a few negatives (like stomach pain as well). Best wishes to you.
-Stacey

[Mary Roth]

Stacey,I am so very much interested in the length of time you have been on Revlimid. I just started on 5mg for del 5q and amazed to hear how long it has helped you!!!

[Paula Voell]

Hi Stacey, I am also taken by the length of your Revlimid experience. I am deciding on whether to start this treatment. What were your initial effects and what other long term effects did you experience. How did you handle the cost of the treatment? I am a 79 year old woman and am currently in a 5-6 week transfusion regimen. What is your transfusion experience? Thanks for helping me out and I wish you continued success. Paula Voell

[stacey]

Hi Mary and Paula! Mary – sorry for the delay in getting back to you and saying hello.

I started taking Revlimid in 2004 when it was a not yet approved clinical trial drug, and I was given it for Compassionate use due to my age (33). Therefore, at that time, and until it was approved, I received it at no cost. I initially started at 10 mg in 2004, but it was lowered to 5 mg after about 6-8 weeks when my red blood cell count and Hemoglobin improved. I take the dosage every day with no days off. Every year since 2004 I have been on the 5 mg dose except when I went off of it to have children (mid 2006 to about 2010), then I resumed the Revlimid because my hemoglobin had fallen while off the medicine. Again, it took between 6-8 weeks for it to start working for me and showing a hemoglobin improvement.

SIDE EFFECTS:
When first starting Revlimid: Very itchy scalp (assuming due to old cell turnover), very few small patches of dry skin on arms and legs and dry skin on face, fatigue, constipation & stomach pain, Lower White Blood Cell count & neutrophil count (those continue to be at least slightly suppressed even after hemoglobin count improves), lower red blood cell count (until hemoglobin count improves), possible skin sensitivity to sunlight.
The Last few years: Same symptoms as above but ALSO occasional leg cramps at night, diarrhea alternating with constipation.

TRANSFUSIONS: I’ve had a total of 8 units of blood. 3 units when I was first diagnosed or just starting Revlimid; I believe the next 2 units were while taking Revlimid when my counts were only going down (in that 6-8 week window) before going up; The last 3 were when I had just given birth to my twins (not on Revlimid then).

COST: It was free to me initially. Now, I have Aetna Medical with CVS prescription insurance through my husband’s work (I don’t work anymore) with a several thousand dollar deductible. Bristol Myers/Celgene has a co-pay assistance program, which I sign up for every year. For me, it helps to delay the yearly deductible payment for a few months, because my insurance applies it until it runs out but then I still have to pay my deductible afterward. Other insurance plans may handle that differently. I know the Leukemia and Lymphoma Society also offers MDS copay assistance but based, I believe, on an income threshold. I think there is at least one other program out there that offers co-pay assistance for MDS patients.

FYI: Over the years, I thought there were at least 2 people on this board who have had an allergic reaction to Revlimid for some reason and had to discontinue treatment, but I have never had this issue.

Any other questions, please don’t hesitate to ask me, I’m happy to answer any.
I hope all goes very well for both of you.
-Stacey

[Paula Voell]

Hi Stacey,

thanks so much for taking the time to write this explanation of your experience with MDS/Revlimid. It’s so true that it is comforting to know that others have gone through serious issues with MDS and have survived and thrived. Congratulations, especially, for your children.
I am very much at the other end of life (at age 79) and my biggest decision is whether it’s worth getting into taking Revlimid, given potential side effects and the uncertainty of how it will be paid for. I understand there are grants, insurance, etc. but right now it’s not clear that I would be eligible.
I know I have to be the one to make the decision, but it’s good to know that I’m clearly not the first.
All the best, Paula

[Lee Warner]

Thank you Stacy and others for this conversation about Revlimid. My husband is age 80 with 5q deletion for the past five years, and initially had a severe reaction to Revlimid.

He was first treated successfully with Procrit injections once each week for two years until Procrit failed, with hemoglobin dipping to 7. Revlimid was Rx’d at 10 mg with severe reaction of welts nearly all over his body, primarily legs and torso, appearing within a few days; Revlimid was terminated of course. Then he was treated with Vidaza infusions five days a week for two years until that also failed and hemoglobin again fell to 7 along with seriously out of range platelets, ANC, MCV and others. And extreme, debilitating fatigue.

After Vidaza failed late in 2021 he had five transfusions, each was two units of RBC. Then his oncologist suggested trying Revlimid at 2.5 mg three times a week — along with a “cocktail” of Pepcid, L-Lysine, and Claritin to combat the rash. CBC levels including hemoglobin and WBC initially dropped but after 8 weeks, CBC readings improved with Hgb at 12. It’s been five months now, with Revlimid Monday, Wednesday, Friday at 2.5 mg, taking the “cocktail” with each Revlimid. Yesterday his hemoglobin was 12.7.

He has side effects, but they’re minimal so far: occasional gut pain, purplish blood spots on the whites of his eyes, rash on his forearms; and fatigue continues- it’s less debilitating than previously. But he is alive – he enjoys family gatherings, going out to visit people, very minor physical activity such as walking a little outside, and he’s always up for driving anyone so long as he can sit in the car.

I think when Revlimid fails, as all these remedies seem eventually to do, he can be sustained on RBC transfusions for some time. How long ? we do not know. Our understanding is that there are no remaining options.

Bottom line on his Revlimid experience: reducing the dose mg, going with three days a week, and combatting the rash can be effective.

If anyone here knows of treatment other than described above, posts about your experience are surely appreciated.

[stacey]

Lee – I am so glad your husband’s smart oncologist has figured out a combination of medicines to take with the Revlimid that helped with his severe rash. That’s very good news that his Hemoglobin is now at 12.7.

Paula- Thank you for the kind congratulations regarding my children. Not a single day goes by that I don’t thank God for them.

Take care and best of luck,
-Stacey

[Diana Blair]

Stacy et Al., who posted in regards to Luke’s post. I appreciate all the information. I’ve had squamous cell carcinoma on my face removed, nasal cell cancer on right arm removed- none of these do I relate to Revlimid – they are my lack of being diligent with sunscreen over the years.
Stacy, I understand where you have been. It took almost 2 years to get my definitive DX with MDS Del5q- went to Center of Excellence to get accurate diagnosis. I had 27 transfusions over period of18 months.. I was in iron overload. Started Revlimid 11/19 and have not had transfusion since 11/30/19. My hemoglobin is great at 12. I’m moderately immune compromised with decreased neotrophils and white blood count of 2(variable dependent on when labs drawn during my 21day cycle of Revlimid. I had rash for 2 1/2 cycles and had treatment with steroids, steroid ointment, andAtarax for severe itching. Rash disappeared and I’ve been able to stay in 5 mgm for 21 day cycles. I also take antihistamine twice daily. I’ve had usual effects of drug with bone pain, fatigue, weakness, insomnia, diarrhea nausea- all of these are variable dependent upon where I’m at in my22 day cycle- I call it my ” wall” and it usually hits toward last 5 days of my cycle. I simply rest, drink lots of fluids, take Tylenol when needed. Otherwise I’m doing really well- so far this spring I’ve been able to work in my yard for extended time, resting if I became fatigued. I have usual bruising that is not really harsh to me as my platelets have remained within fairly normal range. I’m so grateful for this drug as it has extended my life and I’m considered fairly low risk for progression at this time, so I truly am blessed with every day I have. It’s given me time with my great nieces and nephews which is so precious to me.

[Lee Warner]

Stacy, thank you for your long post. It’s so helpful to know experiences others with 5q are having. You are so fortunate, as are all of us (my husband is the 5q patient)- to have remedies that work!

I’ll be asking the oncologist about the relationship between Revlimid / itching / rash and antihistamines. My husband is on a regimen of L-Lysine with Claritin and Pepcid to control his Revlimid rash. It works!

Your description of bone pain, fatigue, and other side effects are similar to my husband’s. It’s interesting to me to read your analysis of side effects and your knowledge about how to manage them. The hematologist told my husband to stop taking 81 mg aspirin because of excessive bruising and potential bleeds. At the same time I’ve read many doctors now tell the general population not to take low dose 81 mg aspirin, as it may have no positive effect for heart issues.

Congratulations on your success controlling 5q. I hope we hear from you again. I also will post changes and information as we go along. I am so grateful for this forum!

• This reply was modified 2 years ago by Lee Warner.

[Mary Roth]

I am 66 and was diagnosed with del 5q a year ago and started on Revlimid 5mg, daily, 6 weeks ago. I live in Canada and was accepted for an assistance program that pays for it all. Otherwise, I wouldn’t have wanted to spend our life’s savings on me. I have mild rash on ankles and got betamethasone ointment for that. My skin is drier and I have flakey patches in eyebrows and hairline; I’m puting the ointment there, too. I have a new growth on face, and have plans to get things checked. Nausea was most noticible symptom, but, not too bad and seems to be a lot less, now. I had severe pain in one hip for a bit, X-ray showed nothing and it is better now. I can’t imagine what that was! My hemoglobin went down fast in January and I had one transfusion before starting Revlimid. I dislike being so tired! My white counts are so low and my hemoglobin is just above transfusion cut-off when tested at hospital. The internal medicine doctor said a transfusion may not help with the fatigue, anyway! I was disappointed to hear that! Anyway, I’m hoping that the Revlimid will start helping my numbers, soon.

Thanks everyone for writing! I appreciate reading this. I feel sorry that we’ve sort of gotten off topic from Luke’s question. I’m not that good with computers and can’t always figure out where to read or post!

[Lee Warner]

Mary, thanks for posting your experience. My husband also experiences odd pains and conditions that come and go, and he wonders if Revlimid causes these. Reading the list of Revlimid side effects, almost anything could be – or not.

We were told it’s typical for CBC numbers to be far off when first taking Revlimid – you’re at a full year now, with white counts remaining low. So that’s a long time; I thought numbers would typically come up after several months. My husband’s WBC ranges from 2.0 to around 3.0; we’re watching ANC too, among a lot of other CBC readings, and it’s also off. He’s at just about six months on Revlimid now.

The good news is that Revlimid very frequently works for 5q – that’s what the ocoolgist says. I hope you can work around the side effects and remain active. I guess we’re all looking for secondary cancer, always a threat. But hoping you can enjoy a good life – we are constantly reminded how fortunate we are that Revlimid is working.

Our best to you, and everyone on this forum. I am thankful for all your posts.

[Jack Allen]

Hi all,
I was diagnosed with MDS RARS,hemachromatosis and non alchohol steato-hepatitis in March of 2002. My ferratin levels got to 2500 due to substantial iron overload which caused my liver deterioration. I do not have Delq5.
I was told to get my affairs in order with the expectation of a sort life span. Obviously they we wrong since I am still here 20 years later, I am now 72.
As you can imagine I have tried virtually every drug and chemo offered to me.
One of them was Revlimid. I worked for me for about 2 years with 2 main side efeects.
1. It relatively quickly destroyed my thyroid gland. Fortunately they have pills to replace this function.
2. My WBCs, especially neutrophils went down very low. I had to take neupogen needles every day for some time and then Nulasta came along with a monthly shot. Easy peasy.
I am currently getting transfused one or 2 bags of blood a week
I was trying Luspatercept but its help was very minimal and my lungs are imflammed and damaged causing severe shortness of breath and very low O2 satuation.I and now being tested to see if I can qualify for home oxygen.

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