Revlimid Treatment

Hi.  My name is Debbi and my dad was diagnosed with MM 8 years ago.  He went into remission and three weeks ago we found out that it has returned.  He started on Revlimid in combination with dexamethasone one week ago.  My dad will be 81 tomorrow.

One sign that started a month and a half ago was that he was losing a lot of weight and suffering from fatigue.  Since starting the Revlimid, he is only awake about 4 hours a day, exhibiting some confusion, and has lost another 6 pounds in 5 days even though he is eating fairly well in addition to drinking Boost.

Does anyone have any experience with this medication and the inital side effects of the treatment?  Is it normal for him to be tired t this extent and also losing so much weight?

I appreciate any help you could give me.

 

On 6/13/2007 Debbi wrote:

Hi.  My name is Debbi and my dad was diagnosed with MM 8 years ago.  He went into remission and three weeks ago we found out that it has returned.  He started on Revlimid in combination with dexamethasone one week ago.  My dad will be 81 tomorrow.

One sign that started a month and a half ago was that he was losing a lot of weight and suffering from fatigue.  Since starting the Revlimid, he is only awake about 4 hours a day, exhibiting some confusion, and has lost another 6 pounds in 5 days even though he is eating fairly well in addition to drinking Boost.

Does anyone have any experience with this medication and the inital side effects of the treatment?  Is it normal for him to be tired t this extent and also losing so much weight?

I appreciate any help you could give me.

Hi Debbie-

   I started on the Revlimid in January 2007. I will start my 21 day cycle starting tommorrow (25mg) This will be my 6th series. I also take Dexamethazone for 4 days straight (10 pills=40mg) in the morning and the Rev at night.  Is your father taking the Revlimid at night??  I take mine faithfully at 8:00 p.m. at night, and I am ready to fall into bed no later than 9:00. It feels like you've been in a hot tub too long.  Your fathers age and sensitivity to the drug may also have something to do with the sleeping part, they may need to adjust the dosage.  They check my blood every 2 weeks to make sure my white blood cells haven't dropped too low - I have only had 1 time that I needed to go off the drugs for 2weeks instead of the 7 days. 

 One of the side affects I do suffer from is loss of words.... I know what I am trying to say, just different words come out....  its really odd.  My husband gets a kick out of it, but after 21 years of marriage- He knows what I'm trying to say which makes it quite funny....  I explain it as though my brains mushy - can't quite make decisions about stupid stuff - But, when I am off for the 7 days, I think clearly again-  The Dexamethazone is harder on me I think - It messes with my emotions - and I crash after the 4 days on it...  My mind and heart goes fast, but my body can't keep up.  It makes me think I'm going a little crazy with nerves, and it tears up my gut and decreases my appetite-  I know it's all the drugs that make me feel the way I do.  I haven't lost any weight - (dang) I am tired and have to sit down more now - My stamina is not there - I blame it on the combination of being anemic and the drugs.

    When your dad was diagnosed, what treatment did they use??  I am 44 - and they want to do a stem cell transplant when I am in remission.  They said when your at your healthiest, it is best.  Not really sure when that will be.  My IgG level is down to 3069. Normal is 300-800. When I was diagnosed, it was 9746.  so the Revlimid is working for me. How has your fathers health been for the last 8 years??  The Doctor said I have had it for at least 3 years.  Do you think your dad has had this for 40 yrs? Not too many people my age - so I am hoping the future will be good with all of the new treatments.     

I wish your father a speedy recovery - And I hope he will start tolerating the drugs so his appetite will increase.  They may need to test his blood weekly or decrease the dosage amount - I do know its a nasty treatment, but it does work.  On another note, I haven't lost my hair, which is a blessing for me- I was more afraid of that than the cancer I think. 

Take care - my hopes and wishes are with you and your family...I'm not sure if any this helps you or not - but the side effects sound a bit similar..  Talk to you soon,

Beckie

 

On 6/14/2007 Becks wrote:

 

On 6/13/2007 Debbi wrote:

Hi.  My name is Debbi and my dad was diagnosed with MM 8 years ago.  He went into remission and three weeks ago we found out that it has returned.  He started on Revlimid in combination with dexamethasone one week ago.  My dad will be 81 tomorrow.

One sign that started a month and a half ago was that he was losing a lot of weight and suffering from fatigue.  Since starting the Revlimid, he is only awake about 4 hours a day, exhibiting some confusion, and has lost another 6 pounds in 5 days even though he is eating fairly well in addition to drinking Boost.

Does anyone have any experience with this medication and the inital side effects of the treatment?  Is it normal for him to be tired t this extent and also losing so much weight?

I appreciate any help you could give me.

Hi Debbie-

   I started on the Revlimid in January 2007. I will start my 21 day cycle starting tommorrow (25mg) This will be my 6th series. I also take Dexamethazone for 4 days straight (10 pills=40mg) in the morning and the Rev at night.  Is your father taking the Revlimid at night??  I take mine faithfully at 8:00 p.m. at night, and I am ready to fall into bed no later than 9:00. It feels like you've been in a hot tub too long.  Your fathers age and sensitivity to the drug may also have something to do with the sleeping part, they may need to adjust the dosage.  They check my blood every 2 weeks to make sure my white blood cells haven't dropped too low - I have only had 1 time that I needed to go off the drugs for 2weeks instead of the 7 days. 

 One of the side affects I do suffer from is loss of words.... I know what I am trying to say, just different words come out....  its really odd.  My husband gets a kick out of it, but after 21 years of marriage- He knows what I'm trying to say which makes it quite funny....  I explain it as though my brains mushy - can't quite make decisions about stupid stuff - But, when I am off for the 7 days, I think clearly again-  The Dexamethazone is harder on me I think - It messes with my emotions - and I crash after the 4 days on it...  My mind and heart goes fast, but my body can't keep up.  It makes me think I'm going a little crazy with nerves, and it tears up my gut and decreases my appetite-  I know it's all the drugs that make me feel the way I do.  I haven't lost any weight - (dang) I am tired and have to sit down more now - My stamina is not there - I blame it on the combination of being anemic and the drugs.

    When your dad was diagnosed, what treatment did they use??  I am 44 - and they want to do a stem cell transplant when I am in remission.  They said when your at your healthiest, it is best.  Not really sure when that will be.  My IgG level is down to 3069. Normal is 300-800. When I was diagnosed, it was 9746.  so the Revlimid is working for me. How has your fathers health been for the last 8 years??  The Doctor said I have had it for at least 3 years.  Do you think your dad has had this for 40 yrs? Not too many people my age - so I am hoping the future will be good with all of the new treatments.     

I wish your father a speedy recovery - And I hope he will start tolerating the drugs so his appetite will increase.  They may need to test his blood weekly or decrease the dosage amount - I do know its a nasty treatment, but it does work.  On another note, I haven't lost my hair, which is a blessing for me- I was more afraid of that than the cancer I think. 

Take care - my hopes and wishes are with you and your family...I'm not sure if any this helps you or not - but the side effects sound a bit similar..  Talk to you soon,

Beckie

 Hi, Beckie.  First of all I want you to know that you are in my thoughts and prayers.  I have heard that stem cell treatment works wonders for MM.  My dad is not a candidate for it because of his age. 

My dad was diagnosed in 1999.  I remember him starting with back pain about two years prior to that.  The doctor initially treated him with Oridian (spelling) and then two years ago switched him to Zometa.  My dad is diabetic and the Zometa was pushing him towards dialysis so they switched him back to the Oridian. 

About two months ago he started feeling really fatigued and had pain in his rib cage.  Four weeks ago he became dehydrated and was hospitalized for three days.  That's when they found out that he came out of remission. 

This morning he was fine and then all of a sudden after breakfast he became completely disoriented.  I rushed him to the ER and he was dehydrated.  His labs are stable except for his platelets being 90 and his BUN and creatinine are elevated again.  After IV therapy, he became oriented again and they released him because they felt he would be at less risk for infection at home than in the hospital.  Dad started Revlimid a week ago tomorrow and he is on 40 mg of dexamethasone every Monday.  He takes the Revlimid and Coumadin at 3p every day.  The good news is that since starting this new treatment his M protein is already decreasing.  Bare in mind that my dad is 81, has been on insulin since his late 40's, has high blood pressure, hyperlipidemia, retinopathy, neuropathy and kidney problems on top of the MM and he's still responding to treatment (plus the 35 lb. weight loss in 8 weeks).

You are young and I hope that you can have the stem cell done soon.   Keep a positive attitude, stay away from stress, get plenty of rest and follow your medication routine.  I'm an RN and the patients that I've taken care of that stay positive beat the odds.

 You are in my prayers.  Please keep in touch when you can to let me know how you are doing.

Debbi

 

Hi,

My husband is 45 and is being treated with the same combination of drugs that your dad is on.  They have had very good results with this drug combo but I will tell you that my husband has lost 45 pounds (he was a little over weight to start with though) in 4 months.  He is tired all the time as well.  Your father's age probably does not help matters.  Once they get the myeloma under control they will probably adjust the dosage and he will have more energy.  It is a tough disease but I have read a lot about treatments and the Revlimid, steroid combination is the best new thing they have to fight this crummy cancer.  We go in for a stem cell transplant this summer.  Good luck to you.

Michelle

Keep up the positive attitude!! My mother in law has had MM for 4 years, she has had two stem cell transplants, been on thilidimide, valcade, dexamethosone and now she has neuropothy in her hands and feet. The valcade was the best thing for the last 6 months, and now it has stopped working. She will be starting revlimid and I hope this works. She is at the point where she is ready to throw in the towel, I keep telling her that new things happen every day in the medical feild and not to lose hope or faith. Good luck to you and God bless you. Michelle

Hi Everyone on this message line regarding Revlimid!  I have now been on Revlimid for 11 months -- I started at 50mg then dropped in stages down to 10-mg every 21 days with 7 days off.  I do not take dexamethasone as I am allergic to steroids -- I found this out after I suffered two bowel perforations after heavy doses of dex.  Apparently, if you have ever had bowel problems before MM, the heavy doses of dex can cause all sorts of additional bowel problems.  But even without dex my paraprotein level has dropped from 90 to 8!!  And apart from some very minor side effects -- ie occasional loss of words, some loss of appitite, etc. -- this has been the best treatment I have experienced!!  As someone else has said, this disease is so individualised -- what works for one person may not for the next -- its about finding what works for you and going for it!!  I have nearly died three times, but in the nick of time something new has come along -- whether that was thalidimide or velcade or revlimid!  I hope that the same will be true when Revlimid no longer works for me!!  Hang in there everyone -- science is working very hard to make MM a chronic rather than a terminal illness.  Best wishes to you all,  Poppy