Father W/Stage 3Mm

Hi,

My father was recently diagnosised with stage 3 MM.  He is very symptomatic, anemic, bone fractures, and poorly functioning kidneys.  He started Revlimid about 3 weeks ago.  He takes the lowest dose and only every other day due to his kidneys.  He formed blood clots in his lungs last week.  They have regulated his blood and back on the Revlimid.  I am trying to get some type of feel for what this drug is going to do for him as far as time.  He is so week, not eating.  He says food does not taste good.  He is also very depressed.  Would love to talk to anyone who can give me some input on what my Dad is in for.

Thanks

Good Evening P. Daughter;

I, too, am stage 3. Been on Rev but with other meds also. Fortunately I didn't have the side affects many do.

I don't know your Dad's age but I feel getting the kidneys back to normal function is very important right now. They have to process the over abundance of protein he is producing. In addition to the meds I was told to drink LOTS of water. He must flush the kidneys constantly.

Also get him to eat. Whether he tastes it or not. The body needs fuel to function.

Take care;

Kevin

Go with Kevin's advice Praying daughter -- your dad does need heaps of water -- 3-5 litres per day, and food - even if he can't taste it. I've been on low dose Revlimid for 18 months and have faced both these symptoms, which in the scheme of things is very mild when thinking of side effects.  My husband Bob keeps 3 sealed drink cups of 500ml each next to me at all times and continualy reminds me to drink and he refills them 2 or 3 times every day.  With regard to food, he provides me with small 'nibble' plates of things which he feels I might like - toast, cheese, small bits of chicken or ham, pickles, pieces of tomato or boiled egg, sliced of apple or other fruits -- which he places beside me and neverr comments on whether or not I try to eat them.  But because he goes to so much trouble for me I do make an effort and I have been able to regain and maintain my wieght!!  Be there as a support for your dad -- help him along his journey and you will be surprised at how he will recover.  Best wishes to you both, Cath

Hi Kevin,

Thank you so much for you input.  My father will be 69 in July. 

Was a bone marrow transplant ever an option for you?  They talk about so many treatments, I always wonder how the dr. decides to start with what he has. 

You will be in our families thoughts.

Sue

Hi Cath,

Thank you so much for you input.  I am passing all of the info onto my mom.  She works so hard to get him to eat that she gets frustrated. 

Will keep you and your family in my thoughts,

SUE

Good Evening Sue;

"Was a bone marrow transplant ever an option for you?"

I am scheduled for an Auto on March 16. Heading to Philly on Monday to prep me for the "harvest".

I have been doing some research on Auto, Allo and Tandem SCT. Trying to choose the best one for my situation after the one scheduled in March. I have Chromo 13 deletion so it's pretty much a given that I'm going to relapse. It's this next one that I'm placing all my chips on!

I would also suggest that you inform yourself as much as possible about your Dad's future so that you and he can make the best tx. plan when speaking with your Dr. Don't let them decide what's best for you. Both of you decide what's best! You can only do that by understanding what is explained to you and offering suggestions that make the Drs. ponder.

Take care;

Kevin

Dear Praying Daughter,

 When my husband started having kidney problems, our family doctor put him on a med called Allopurinol - 300 mg - once daily.  It brought his creatinine level back to normal.  The med helps break down the proteins he is putting out through his kidneys.  It might be worth asking your doctor about, if high creatinine levels are causing problems with your Dad.

Best of luck!

Jan  (we'vebeenthere)

Praying Daughter,

Just a note from my last message, did you ask the doctor about allopurinol to improve kidney function?  The med is usually used for gout, but also works to break down proteins that are being put out in the urine as the myeloma cells die off.  In speaking with the myeloma hotline, they told me that they had never heard of using that med in myeloma, but our first oncologist put my husband on it during his first treatment with only dexamethasone.  Problem was that the dex didn't work as he expected so he took him off the allopurinol.  Family doctor put him back on it when rev was added to the dex as the rev/dex combo worked and he started showing high creatinine levels in his urine, due to the proteins being broken down in his urine 

My husband also has had blood clots in the leg that traveled to the lung.  He had a "greenfield filter" put in place to keep the clots from traveling from the leg to vital organs.  It has worked well.  He also had lovenox injections as oral blood thinners were hard to regulate given the fact that he had several infections and was on antibotics.  Antibotics can cause problems in regulating oral blood thinners.  He is now back on oral blood thinner and is doing well. 

Don't know if any of this will help you, but I hope it does.  Take care.

Jan