CancerCompass message board discussion started by katjune51 on 7/17/2008 http://www.cancercompass.com/message-board/message/all,26157,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am new to this site.  My husband was diagnosed in January, 2003 but he was only being monitored until 3 weeks ago when he had an MRI and received a phone call from the oncologist that the mm had progressed and he needed to start chemo in preparation for a stem cell transplant.  Ironically enough my father was diagnosed in November, 2002 and at age 81 passed away in February.  My best friend was diagnosed last year and she underwent a stem cell transplant in February of this year.  I feel like I'm a jinx at times because everyone close to me ends up getting multiple myeloma.  My husband is on Velcade weekly w/Decadron the day of chemo and the day following for 12-16 weeks.  It will be followed by a stem cell transplant.  The doctor also wants him to have another round of chemo with a tandem stem cell transplant.  My husband has other health issues that compromise his immune system such as asthma and COPD.  Last year he was hospitalized with pneumonia three times and the year before twice.  Has anyone had a similar situation as far as a compromised immune system and also undergoing a stem cell transplant?  Any help you could give would be very much appreciated.  Thank you. katjune51 Thu, 17 Jul 2008 00:00:00 GMT From Anna,Hi Katjune, Dad had 2 stem cell transplants years ago.  He has had MM 10 years. Don't remember everything but they did chemo before each one.  He got sores in his mouth and his stormach stayed messed up.  Don't remember any other things with the transplants.  One thing that he's Dr. hadn't seen before was they ended up collecting enough stem cells for 5 transplants plants.  After the transplants he was in remission for about 5 years. He's not now though.  He had done Thalidomide, Velcade and now Revilmide. At different times.  They added Steriods each time I think.During all this he had to have his gall bladder removed.  It was dieased.  After that he started having a lot of bathroom problems. Which to this day he has.  He's also dealt with blood clots and dealing now with Dead Jaw from the bone strengthener. Now I'm not saying your husband will have any or all of this.  Everyone is different.  One thing I will tell you both is a good attitude helps.  Exercise is also recommended with MM. What ever he can do will help.How did they find his MM?  If you said I don't remember. Dad had nose bleeds. Which I think is a rare symptom. Not uncommon but rare.  Most people break a bone.  From the bones getting weak from the wholes.Oh yeah Dad was in the last 2 stages of MM when they told him. Keep us up on how things go.Your friend, Anna Anna9563 Thu, 17 Jul 2008 00:00:00 GMT Yes.  I had a compromised immune system before the diagnosis of MM.  I've had lupus since 1974 with kidney involvement twice.  My kidneys are only functioning at about 20%, so any meds for the MM have to be adjusted.  I also had two stem cell transplants (May '06 & Sept 06), had pneumonia twice since then and sepsis (which almost killed me).The only advice I can give is what I do.  Be careful with dirty hands.  Always wash before eating.  I wash them after coming home from driving.  Don't touch your face - eyes, nose, mouth. Try not to see friends/family if they are ill and that means a common cold too.  They should tell you so your husband won't risk the exposure.  Very young children carry a lot of virus's, so be careful in that regard also.  My doctor gives me Gamma Globulin.  It's a blood product that helps your immune system.  Sometimes it's difficult to get because of supply.  Some insurance companies will not pay for it and usually it will have to be precertified with insurance if they do pay.  It takes a couple of hours IV and is given once a month or so.  After having the sepsis I was happy to get this.  It's been a year and might be the time to stop.  I have to discuss with UAMS next week when I'm there.Asking your husband's doctor and nurses will help.  I get a lot of good information from the nurses.Hope this helps.Lois LoisA Thu, 17 Jul 2008 00:00:00 GMT From Anna,Hi again Katjune, Forgot to tell you before they told Dad what he had he had Pneumonia 4 times in 2 years.  That should have told us something was wrong cause before that Dad never got sick like that.  He's had it at least once his they told him he had MM.Your friend,Anna  Anna9563 Thu, 17 Jul 2008 00:00:00 GMT While my husband didn't have MM, he suffered for years from a rare blood disease called POEM's syndrome.  His health and immune system were totally comprised when he underwent his stem cell transplant in August 2006.  He had 40% lung capacity at transplant time.  I don't know where your husband is having his transplant, but I highly recommend the Mayo clinic in Rochester, MN.  Their BMT staff is top rate.  We met many MM patients in the ward where my husband was treated.  Best of luck! caregiver08 Wed, 23 Jul 2008 00:00:00 GMT