I Have Multiple Myeloma

 I have written you a private repley but Revlamid can work.  MM takes a lot of hard work to get into remission. natural diet, Lots of heavy medidtation, bio feedback.  Tumeric or Curry with Tumeric is excellent for helping in cancer but especially MM.  Green Tea, CoQ10. Radiation is only given as a pallative treatment to relieve pain or stop total destruction of bones, but when you are not making red blood cells and also low on white blood cells radiation can devistate.

YOu MIL is not uncommon as MM seems to be very hard to track, I had mine for a year or more and even when the blood work was abnormal and I told my doc it was dangerous he said I just can't see anything wrong.

Everyone is different but stay away from sugars and fruit, as sugar feeds cancer and fruit is full of sugar.  You can have limited fruit but try red fruits and no bananas. Potato has more potassium but is also carbohydrate.

All the best in your quest. You might want to visit this site www.polymvaxurvivors.com and also cancer treatment centers of America

www.cancercare.com 

On 5/25/2007 Becks wrote:

Hi - My name is Beckie and I am 44 years old.  I was diagnosed with MM after having high proteins for about 3 years.  I've been on the Revlamid Therapy with Dexamethazone for 5 months now. Apparently, I am very young to have been diagnosed with this disease.  My mother in-law died 2 years ago at 62 of MM - she went undiagnosed.  Do you think she had it for 20 years??  I am hoping remission will come soon - Any ideas as to how long I can live in remission?? Any one else on this Therapy?? How do you feel??  It would be helpful if someone could relate to what I am going through -  Anybody?? 

Thanks

Beckie

On 5/26/2007 Larryk2 wrote:

Hi Beckie,

I was diagnosed in Oct. 2002. I was 52. Found out I had MM because of physical problems - some plasma cells had clamped down on my left sciatic nerve. Took an orthopedic surgeon to spot it.  Did some focused radiation to zap the cells around the nerve. Worked well.  Then did 4 rounds of VAD to get the myeloma down a bit for an Auto SCT. Did that in late 2003.  Was not too big a deal for me.  Had about 3 years of 'under control' myeloma, but it started to come back in Jan 2007.  Feeling fine, but showed it self as physical problems again, on the other side - by the hip joint.  Had that irradiated.  Doing fine again.

<>Started Revlimid and Dex. about 4 months ago.  My 'light chain number' whatever that is, went from 72, to 45, to 18, to 9, down to 6.8, now at 9.  After the transplant it had hovered at about 20 or 30.  My ratio of light chains to Kappa is now at a 'normal' range of about 1.

I am tolerating the drugs well, and have not had any side effects.  There are some ups and downs with the Dex., but not bad.  I hope to be able to control this as a 'chronic' disease, and deal with the 'problems' as they arise.  No cure, but shoud be able to manage.  Attitude plays an important roll in general health, recoveries, and  the fight.

<>How are you tolerating the drugs ?   Your age is definitely on your side.  If I had it to do again - now - I would not do a SCT.  The new drugs are as effectiv, and unfortunately cost about as much.  

<>My Rx insurance covers all but $ 62.50 each month for the Revkimide, but it is charged by Celgene at $7000. per month for 21 pills.  Outrageous,  But it appears to work. The company claims that it 'only cost a few cents a pill to make, but they price it based on what alternative treatments would cost - like an SCT'.  Somewhat immoral. Oh, well I will stop beating my drum - I have been involved in this process a few years. 

I will send some good and healing thought your way and hope you have excellent results with you therapy.  Take Care.   Larry  

 

   

 

 

 

Hi Larry,

   Finally getting back to you. I am tolerating the Revlamid and Dex o.k., My oncologist changed up the Dex, doing 40mg once a week instead of 4 days in a row.  Maybe I won't crash now, I'll start 25 mg Rev again on  Friday. I will be going to the doctor Tuesday for the blood work for the RX and getting my IgG level results.  I started at 9746 in Jan, and it was down to 4404 in April (normal is 400-1400?) So I am responding, just not as quickly as I wanted to.  My biggest problem is the anemia.  I need a shot every other week of Aeranesp because my hematocrit never goes over 36. I'm thinking I am more tired from the anemia than the chemo, but how am I to know??  Are you getting Zometta IV's ??  I get an IV once a month to strengthen my bones - there is no test telling you if it is working or not, but doctor says it seems to help with any bone lesions or fractures.  I asked him if I REALLY needed it- he said yes for at least 2 years. So I will continue - So why did they do your auto-sct so soon?? I asked my doctor when he would want me to do one, he said when I start coming out of remission. I asked if I could just do Rev & Dex again and he said it is a possibility.  Do you know if you can have more than one SCT? Will you be able to have another?? How long were you out of work? Are you able to work now?   Let me know... 

About your insurance, I have Federal Blue Cross Blue Shield, except i'm on Cobra for now, They pay 90/10 so that is good except $440 month premium  I am screwed when my cobra runs out unless I go back and work for the Fed. Government, because now I have a pre-existing illness and am un-insurable for a year with another insurance company.. Just another thing I have to ponder.  Hope you are doing well...  I'm off the drugs for my 7 days and I actually feel almost normal, this last 21 days seemed to drag on...  But I'm good...

Hope to hear back from you -

Beckie

Beckie,

you emailed me back in May, when I posted my older sister Denys was diaganosed in August of 2006.  How are you doing.?? 

Denys didn't respond the the Revilimid or the Stem Cell Transplant.

Currently she is in tremendous pain in all her bones.  She has been waiting for approval on Velcade.  We just found out that it looks like the insurance company won't cover it, because it is considered an experimental treatment.  She is going to the hospital tomorrow to speak with them about getting a discount or possible the hospital picking up the tab.  She is losing some much weight and tells me she has huge pain all over her body.  She has never experienced such pain. I feel awful for my sister.  I am returning as caregiver this Friday to LIttle Rock.  I am very scared, there isn;t one day that she isn't on my mind.   I Love her so much.  I truly hope and pray everything works out for my sister and also for you.

Susan

I understand what your going through. I was on tholidomide/dext for 2.5 years when I was on treatment.... felt like crap on treatment but it was worth it to find out I  am i remission and have been since 1/06. so be strong and be patient. rest but also try and keep busy with small projects and your family.

               all the best to you,   april  ( age 43)

On 5/25/2007 Becks wrote:

Hi - My name is Beckie and I am 44 years old.  I was diagnosed with MM after having high proteins for about 3 years.  I've been on the Revlamid Therapy with Dexamethazone for 5 months now. Apparently, I am very young to have been diagnosed with this disease.  My mother in-law died 2 years ago at 62 of MM - she went undiagnosed.  Do you think she had it for 20 years??  I am hoping remission will come soon - Any ideas as to how long I can live in remission?? Any one else on this Therapy?? How do you feel??  It would be helpful if someone could relate to what I am going through -  Anybody?? 

Thanks

Beckie

Hi, My Name is Edward 37 years Old, I was diagnosed with MM 3 years back. It started with a back pain.after few months I was paralized. My spine was operated. I was with Chemo for nearly a year. and with talix & dexa for about another 1 1/2 years. The desease was fully under controle. Now I am given Lenalid for another 3 months to check the process. Hope this will help.

Thanks

Edward