Need some input, please....

Long story, try to make it short.  My sister was dx in Oct. 11% plasma cells.  She started on rev/dex in hopes to lower protein level for SCT.  She was doing well and protein dropped to .07. They started to proceed with SCT tests, etc.  Insurance wanted a second opinion which she did.  That doc recommended a CT because he questioned enlarged lymph nodes and spleen.  After scan those areas were fine however they found 11cm mass on left kidney.  She had to stop rev/dx to have surgery to remove it which was done on May 6th.  It was found to be stage 3 kidney cancer.  She was off meds for 3 weeks than went back on....in late June she discovered she had a blood clot in calf and had to go off meds again for about two weeks.  In this time with going on and off meds, her protein level has peeked up to 1.1.  She got a phone call today from transplant coordinator stating that they are proceeding with SCT and testing.  She goes on August 17th for tests, August 28th for another biopsy and they estimate she will begin harvesting process on September 16th. 

 This has happened so fast!  I thought her protein level should be as close to 0 as possible.  If its at 1.1 and they start process that means she stills has cancer cells. 

Has anyone had good result of complete remission with a protein level of 1.1?

We are scared and confused.  Any comments appreciated! 

Thanks and God Bless,

Danielle

Is your sister seeing a specialist? If not, I would suggest she does before she has a SCT. I had 30 to 40 percent plasma cells based on special stains study and an m-spike of 0.9. I went on dex/thalomid for little over 4 months and then went to a specialist for a transplant. My m-spike was down to 0.2 but he just wants to wait to see what the disease does because I really have no symptoms. So, presently I am not on any medication. There are drugs available today that can control this disease without a transplant that may or may not put you in remission.

Yes, she has been seeing a specialist since October.  The protein level (is that the M-Spike) was 3.5 at that point.  As of this May, it was at its lowest 0.7.  Her doc said that some people never get to 0. 

She really doesn't and didn't have symptoms except that she was always tired.  She has been anemic for several years and I guess they say that is a way MM presents itself sometimes.  She has had several blood transfusions this past year as a result of her amemia and being on revlimed. 

 

From what I've been told Danielle, we can get down to a 0 reading, however that mearly means that the instruments that we have today can only read to this level.  I don't want to sound negative, but thats what the medico's have told me.  I feel that with all the new medications available today, we are finding that the paraprotein readings are dropping like stones rather than drifting down like feathers.  But in all honesty, after 6 years of monthly sometimes weekly blood tests, I can't tell you what my reading is at any given time -- its only the reading from the test that tells me how high, or low, my paraprotein (M spike) actually is.  Oh, I know that the paraprotein level will impact on all my organs and can ultimately kill me, but I believe we get so fixated on the numbers that we sometimes forget how to live. We focus on blood test to blood test, always fearful of the outcome -- how high has it gone, is it worse than last month?  What will this mean, now or in the future.  Not that we shouldn't care, don't get me wrong, but by being treated we are constantly trying to reduce the destruction of the paraprotein -- we shouldn't let our worry also destroy us should we? The paraprotein reading can be influenced by so many things, it can fluctuate from day to day, time to time -- and to base how we feel on this number is not in our own best interest.  Listen to your body -- and do what it is telling you.  I find that when I wake up on a beautiful sunny day I immediately feel better than I did on a grey dull day, and its only the weather that has changed!!  The smile comes to my face and spreads to my entire being and has nothing to do with my M spike!!  Having to visit the doctor every month for 'the blood test' so that I can get another prescription makes me focus always on that measurement and its only been recently that I've been able to really not care what the results are going to be.  Its after midnight here and I'm falling asleep as I write so I'm going to close for now.  I hope that I have been coherent enough to get my message across.  Enjoy everyday as it comes, especially when you are not in pain. Don't spend time worrying about your M spike on a daily basis -- I believe in only worrying about things that you have some hand in being able to change.  Good luck with this Danielle -- its taken me 6 years to get to this point, but then if I'd listened to the first doctor and believed him I'd have been dead long, long ago!  Best wishes to you, Cath