Is anyone here talking Revlimid? If so please share with me

Posted by packgb19 @packgb19, Jan 16, 2020

Today I took my 1st pill 20 Mg., please share your thoughts and how its working for you my friends.
Patrick from IL

Husband does. At first a little diarrhea. Goes away. 3 wks on, 1 week off. MDA patient, lical doc concurs. Coming up on 2nd yr, works great.

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Revlimid started helping my husband immediately – his hemoglobin and other levels increased within a week. But he developed a serious rash of welts over most of his body – an allergic reaction we could not control with Benadryl & Claritin. He had to stop Revlimid. Meanwhile his Neutrophils and White Blood Count dropped so quickly it was alarming. Oncologist put him on Levofloxican for 20 days. His WBC and Neutrophils are slowly climbing back up. Watch for all white cell levels, stay away from sick people, carry hand sanitizer, be careful! The upside is that if Revlimid works, the side effects are manageable.

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This month marks 8 years since I was diagnosed with multiple myeloma. I have been on treatment plans with Revlimid many times during my battles to manage the myeloma. I have also been on Pomalyst (which is very similar to Revlimid). I had very few side effects from Revlimid. Lower white counts and minor fatigue-absolutely no nausea, headaches, acid-reflux or severe side effects. My father-in-law has successfully stayed in remission from multiple myeloma for over 5 years by taking a low dose of Revlimid weekly. In December, I had to quit taking Pomalyst because it wasn't working on my aggressive cancer anymore. Revlimid was successful for a few years but now I have moved on to new approaches; CAR t cell therapy and Kyprolis, Darzalex, DEX trial. I hope Revlimid treats your cancer. Everyone with multiple myeloma reacts differently. I hope you have many years of Revlimid maintenance!

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My dad took Revlimid a number of years ago and had a bad reaction. So he had to stop. His multiple myeloma came under control with the help of daratumumab. Last year (2020) his M Spike was slowly increasing each month. We expected him to have less of a risk of a reaction this subsequent time of taking Revlimid. Unfortunately after a couple of weeks he developed a rash again. Not as bad as the first time. Had to stop Revlimid. Fortunately his M Spike is lower and stable now.

Has anyone else had this pattern? What did you and your prescribers end up deciding to do?

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@devehf

My dad took Revlimid a number of years ago and had a bad reaction. So he had to stop. His multiple myeloma came under control with the help of daratumumab. Last year (2020) his M Spike was slowly increasing each month. We expected him to have less of a risk of a reaction this subsequent time of taking Revlimid. Unfortunately after a couple of weeks he developed a rash again. Not as bad as the first time. Had to stop Revlimid. Fortunately his M Spike is lower and stable now.

Has anyone else had this pattern? What did you and your prescribers end up deciding to do?

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Sorry to hear your dad experienced the bad reaction again, @devehf. Can you explain why they thought he would have less of a reaction now than before?

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@devehf

My dad took Revlimid a number of years ago and had a bad reaction. So he had to stop. His multiple myeloma came under control with the help of daratumumab. Last year (2020) his M Spike was slowly increasing each month. We expected him to have less of a risk of a reaction this subsequent time of taking Revlimid. Unfortunately after a couple of weeks he developed a rash again. Not as bad as the first time. Had to stop Revlimid. Fortunately his M Spike is lower and stable now.

Has anyone else had this pattern? What did you and your prescribers end up deciding to do?

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@devehf Hello Dave. My name is Nancy and I am one of the Mentors in the Blood Cancers Group. I have taken Revlimid with Velcade and Dexamethazone with a switch to Darzalex in between. My experiences have been varied but in all instances I had side effects that definitely compromised my quality of life. I eventually discontinued it. But not before it took me into remission. The point probably is that everyone is different so we are fortunate research is producing more and more quality and effective treatments. And it sounds like your dad has caring professionals helping him navigate his options. I hope that you will come back and let us know where his journey takes him. Peace, Nancy

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@wycowgirl307

This month marks 8 years since I was diagnosed with multiple myeloma. I have been on treatment plans with Revlimid many times during my battles to manage the myeloma. I have also been on Pomalyst (which is very similar to Revlimid). I had very few side effects from Revlimid. Lower white counts and minor fatigue-absolutely no nausea, headaches, acid-reflux or severe side effects. My father-in-law has successfully stayed in remission from multiple myeloma for over 5 years by taking a low dose of Revlimid weekly. In December, I had to quit taking Pomalyst because it wasn't working on my aggressive cancer anymore. Revlimid was successful for a few years but now I have moved on to new approaches; CAR t cell therapy and Kyprolis, Darzalex, DEX trial. I hope Revlimid treats your cancer. Everyone with multiple myeloma reacts differently. I hope you have many years of Revlimid maintenance!

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With Multiple Myeloma we are all in the same boat experiencing different reactions to the newer medications. A battle that is worth to live by trying sometimes different combinations. Mine is currently Dexamethasone 20mg- Kyprolis – Revlimid 25 mg. In the fifth round my Lambda light chains are recalcitrant and delay meeting the igG.
wycowgirl307 you are though. Revlimid treats Myeloma and even more with a combo. Good luck

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Mom has myelodysplastic syndromes (MDS) with deletion 5q and started 5mg of Revlimid this week. One day on and one day off. She is having many side effects like nosebleed, gums bleeding, stomach pain, constipation, hard time sleeping, fatigue. Just wondering if any of you that take it may have started out the same but now manage it well?

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@anamoner1

Mom has myelodysplastic syndromes (MDS) with deletion 5q and started 5mg of Revlimid this week. One day on and one day off. She is having many side effects like nosebleed, gums bleeding, stomach pain, constipation, hard time sleeping, fatigue. Just wondering if any of you that take it may have started out the same but now manage it well?

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Hi Ana, welcome. I'm sorry to hear that your mom is experiencing such difficult side effects with Revlimid (lenalidomide). I moved your message to this existing discussion about Revlimid so that you can connect with fellow members like @devehf @pom @1nan @wycowgirl307 @5qdeletion @gmajudy, who have experience with this drug, either themselves or someone they care for.

Have you reported your mom's side effects to the symptom management nurse or oncologist? Have they offered any suggestions?

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@colleenyoung

Hi Ana, welcome. I'm sorry to hear that your mom is experiencing such difficult side effects with Revlimid (lenalidomide). I moved your message to this existing discussion about Revlimid so that you can connect with fellow members like @devehf @pom @1nan @wycowgirl307 @5qdeletion @gmajudy, who have experience with this drug, either themselves or someone they care for.

Have you reported your mom's side effects to the symptom management nurse or oncologist? Have they offered any suggestions?

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Thank you! Yes, we have left a message. Today was a better day. Thanks for moving my question to the most recent discussion.

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I 'had' M M. Diagnosed six years ago. Took Revlamid DAILY until two months ago. Now I have leukemia-ALL. Maybe the Revlamid should have had breaks in the use of it as seems to be common. I had no side effects that I noticed except for the current cancer that may be related.

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@stanmurray

I 'had' M M. Diagnosed six years ago. Took Revlamid DAILY until two months ago. Now I have leukemia-ALL. Maybe the Revlamid should have had breaks in the use of it as seems to be common. I had no side effects that I noticed except for the current cancer that may be related.

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@stanmurray Has your medical team told you the Revlimid is a contributing factor to the ALL leukemia? When a person's immune system is compromised in some way, other disease factors may raise their head.

I was diagnosed with active MM a year ago, and just started taking revlimid, three weeks on, one week off. At this time, no side effects except a mild rash on my lower legs, benefiting from cream and benadryl.
Ginger

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