CancerCompass message board discussion started by Bubbs33 on 1/6/2008 http://www.cancercompass.com/message-board/message/all,19424,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am looking for some insight from those who have been there.The background:My Dad was diagnoised with MM after a pathological break in his arm and a battery of tests.  Since then he has been on pamidranate to strengthen his bones, Revlimid and Dex 21 days on 7 days off, through surgery had a cobalt/titatium rod inserted in his upper leg to prevent another pathological break.  He is now on his 4th cycle of chemo.  His hemoglobin has been so low that he has had more transfusions than I can count.His para-protien started at 56 and now is 26. His calcium was too high, now it is too low.  His hemoglobin continues to be in the 80 range...best was 96 before surgery and worst was 76.  I understand transfusions are required when it drops below 85.His white blood cells are low.He currently has a cold and urinary infection.  Two months before diagnosis he was 270lbs. At diagnosis he was 246 lbs.  Mom was able to get him up to 250 before the surgery.  Post-surgery, and with the infections he is now down to 229 lbs.  He is so weak, he sleeps 20 hours a day. Has no energy to eat or interest in eating.  Last week he dropped 6 lbs in 7 days.The doctors say he is responding well to the chemo (but may have to stop if his counts get too low - I think they are talking about white blood cells and hemoglobin).  They are not concerned about the weight loss and want him to walk more.Is this just a stage or the start of a slippery slope?  Note up until the pathological break in his arm in September - he was active, running the house, doing gardening on a 1/2 acre of land. Insights are appreciated. Bubbs33 Sun, 06 Jan 2008 00:00:00 GMT You will have to start asking questions like :Should he be takng Thalidomide/dexamethosone,or should he start Revilmid/dex or Velcade?  Is he a canidate for Stem Cell transplant.MM is an incurable disease.  There is several good treatments going on right now.  He should be seeing a good cancer doctor.  Weight lose usually happens with any cancer but doesn't have to be that way.  Try to figure out a good way to keep the appetite up, once in remission they will feel like eating again.Take care,Anita my dad Sun, 06 Jan 2008 00:00:00 GMT It does sound like he is responding to the medication, but is also having some significant side-effects. It does however sound reasonable that the doctors want to continue with the treatment and monitor his HGB and WBC levels. As long as they can keep those two from bottoming out  and the cancer is being reduced it is working.I also agree about the walking. This is very important with MM patients. It helps strengthen the bones and oxygenates the system which helps fight the cancer. It's very hard to get motivated to do this when you are so tired, but really work to get him out and moving if at all possible.Regards,Craig Persel  photog Sun, 06 Jan 2008 00:00:00 GMT Photog and My Dad:Thanks for the words of encouragement. I try to stay positive (especially in the presence of my dad and his grand kids).  Unfortunately, the negativity of others can wiegh me down and then I start to doubt my perspective.  Cheers and wishing everyone a healthy and happy new year!   Bubbs33 Sun, 06 Jan 2008 00:00:00 GMT Being a caregiver is a tough job. No doubt about it. I feel that most of the time my task is to be a 24/7 cheerleader. To take anything negative and turn it into something positive. That said ... you really have to take care of yourself so you can take care of the other person. That's a hard one for me and I've had to start seeing a psychologist 1-2x per month just to get a better perspective on things, receive some feedback and learn to keep life in balance.Take care.Craig  photog Sun, 06 Jan 2008 00:00:00 GMT  On 1/6/2008 Bubbs33 wrote:I am looking for some insight from those who have been there.The background:My Dad was diagnoised with MM after a pathological break in his arm and a battery of tests.  Since then he has been on pamidranate to strengthen his bones, Revlimid and Dex 21 days on 7 days off, through surgery had a cobalt/titatium rod inserted in his upper leg to prevent another pathological break.  He is now on his 4th cycle of chemo.  His hemoglobin has been so low that he has had more transfusions than I can count.His para-protien started at 56 and now is 26. His calcium was too high, now it is too low.  His hemoglobin continues to be in the 80 range...best was 96 before surgery and worst was 76.  I understand transfusions are required when it drops below 85.His white blood cells are low.He currently has a cold and urinary infection.  Two months before diagnosis he was 270lbs. At diagnosis he was 246 lbs.  Mom was able to get him up to 250 before the surgery.  Post-surgery, and with the infections he is now down to 229 lbs.  He is so weak, he sleeps 20 hours a day. Has no energy to eat or interest in eating.  Last week he dropped 6 lbs in 7 days.The doctors say he is responding well to the chemo (but may have to stop if his counts get too low - I think they are talking about white blood cells and hemoglobin).  They are not concerned about the weight loss and want him to walk more.Is this just a stage or the start of a slippery slope?  Note up until the pathological break in his arm in September - he was active, running the house, doing gardening on a 1/2 acre of land. Insights are appreciated.Dear Bubbs;I am presently on Rev/Dex/ Velcade, 14 days on, 7 off. I will be starting my tenth cycle tomorrow. To date, I have had no side effects. But my research shows that the Rev and Vel tend to cancel out each others side effects. My blood counts have been low also. I received two units of blood late July. Also a dose of Aranesp in early August. Since then my reds and whites have been somewhat within the normal range. Usually lower end. But that's the nature of the disease and the treatment. I have had no chemo to date but am scheduled for some in early Feb. 08.I am on Zometa to help strengthen my bones. Last day of my cycle.My question to you is why are they giving your Dad chemo? A high calcium level is the nature of the disease. And also a sign the Drs. look for. If his calcium level is now low, I would presume that the pamidranate is doing its job of letting the bones absorb the calcium. I take a calcium supplement every morning to keep my calcium level in the range. My belief is that if the meds take calcium from the body to strengthen the bones you have to have the reserve there for the bones to benefit. Speak with your Dr. regarding taking a calcium supplement. With low white cell counts, you must protect your Dad from infection. Nobody, absolutely nobody, goes near him with any colds, flu, etc. He's fighting a tough enough battle, tell the family and friends to stay away.I believe the loss of appetite is from the chemo. As well as the chronic sleeping. The body needs to recover from the radiation. However, I do believe that a little exercise will help more than hurt. Our bodies were meant to move. Have you seen Jack LaLane on T.V. lately. The guy's 90 y.o.!I also do not believe your Dad has started down the slippery slope! He's hurting from the chemo and the meds. His body is doing what it's expected to do: Conserve energy, rest and recover. But your body needs fuel to regenerate itself. He has to consume food. Not eat, you can juice it, drink it, I.V.,etc. But he must fuel the engine!I again would want to know from the Drs. why the chemo? Are they preparing him for a SCT? Does he have lesions or a tumor somewhere? Are the meds not working well enough?Stay positive! They're making bigger steps everyday with this disease!Take care;Kevin  K. C. Sun, 06 Jan 2008 00:00:00 GMT I think she is referring to the Vel/Dex as chemo.Another potential medication is Procrit (Eprex in Canada). My wife has been taking weekly injections and it has really helped with keeping her RBC, HGB, etc. rising steadily even while taking Velcade. I would check with your father's Dr. about it.I 2nd Kevin about keeping away from people with colds, etc. My wife has a low-normal WBC, but very quickly caught a cold from a visitor. I immediately had her on C and Zinc, but it still took her a good week to get over it. Also, like Kevin said, eat well and walk as much as possible. It helps. Regards,Craig  photog Sun, 06 Jan 2008 00:00:00 GMT Dear Bubbs;Something I forgot to mention last night, what are your Dad's M-Spike and IGG numbers? The spike should be 0.0 in normal people and the IGG's should range from 700-1600. I reread your post and my response and apologize if I misunderstood chemo and trust I didn't create too much confusion. The chemo I'm scheduled for is called High Dose Melphelan. Take care;Kevin K. C. Mon, 07 Jan 2008 00:00:00 GMT