CancerCompass message board discussion started by GAMBLER1 on 4/27/2008 http://www.cancercompass.com/message-board/message/all,23469,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am new to this web site but have found it very helpful.  My wonderful husband was diagnosed with multiple myeloma (Stage 3) in January 08.   He is taking Revlimid three times a week and has seen some improvements in Protein counts.  I am told this is very good.  He has had lots of side effects such as blood clots in his legs and lungs.  He is now on Lovenox which seems to be working as expected.  The other problem he has is loss of blood.  I haven't read about this problem from any of you.  I am curious if this is common.  He has had to have many transfusions.  He had 2 pints on March 17th and had to have another 2 pints on April 7th.  However, prior to this time he went 6 weeks and needed 1 pint.  This worries me.......can anyone give me some insite about this?   He also had the rash over his entire body except for his head.  After a month the rash has dissapeared.  Thanks for your concern.     Gambler 1   GAMBLER1 Sun, 27 Apr 2008 00:00:00 GMT  On 4/27/2008 GAMBLER1 wrote:I am new to this web site but have found it very helpful.  My wonderful husband was diagnosed with multiple myeloma (Stage 3) in January 08.   He is taking Revlimid three times a week and has seen some improvements in Protein counts.  I am told this is very good.  He has had lots of side effects such as blood clots in his legs and lungs.  He is now on Lovenox which seems to be working as expected.  The other problem he has is loss of blood.  I haven't read about this problem from any of you.  I am curious if this is common.  He has had to have many transfusions.  He had 2 pints on March 17th and had to have another 2 pints on April 7th.  However, prior to this time he went 6 weeks and needed 1 pint.  This worries me.......can anyone give me some insite about this?   He also had the rash over his entire body except for his head.  After a month the rash has dissapeared.  Thanks for your concern.     Gambler 1  Dear Gambler 1,So sorry to hear of your husband having myeloma.  His sounds much like what my husband went through the first few months after we found out he has myeloma, in June of 07.  I'm not sure that blood "loss" is what is happening, but rather the myeloma does not let the body build new blood cells the way you and I can.  Low blood counts are a big part of myeloma.Here's what our doctors did:  checked to see if his vitamin B-12 level was low, which it was, so they started him on B-12 shots.  One shot daily for 10 days, then shots once a week for one month, and now he takes one shot a month.  Shots work faster that oral B-12.  They did in depth iron studies and gave him one synthetic iron transfusion (simular to a blood transfusion).  Because he has had a heart attack in the past, his hemoglobin MUST be kept above 8, to lessen the stress on his heart.  He was having blood transfusions each week (2 units at a time) for a month.  He was also put on Procrit shots, one shot a week for one month and now one shot every two weeks, to bring and keep his counts up.  Our oncologist uses Procrit as she feels it brings the counts up faster than other meds of this type.My husband also has blood clot problems and was on lovenox.  A Greenfield filter was placed to stop the clots from traveling from the legs to vital organs and he was able to go back on oral blood thinners.  I see that you said that your husband takes Revlimid three times a week.  My husband also takes Revlimid, but takes it daily (25 mg) for 21 days, then stops taking it for 7 days, and then repeats the cycle.  He also takes Dexamethasone (40 mg) one day a week.  Revlimid is usually given in cycles like my husband is taking it, is there a reason your husband takes it three days a week?  If he is having reactions to it, it does come in lower doses.  When my husband first started taking Revlimid, his creatinine went up, which shows kidney problems.  Our doctor put him on a med called allopurinol - 300 mg - once daily.  It helps break down the proteins that build up in the kidneys when the myeloma cells die and are shed through the kidneys. Allopurinol is a gout medication, but it works well in this situation, too.  I have to warn you though, your doctor may question why you are asking about allopurinol, but it really does work to bring creatinine levels back to normal.I hope this helps you.  Once they got my husband on B-12, Procrit and got the creatinine levels down, he felt much better.  It took a couple of months, but he hasn't needed transfusions since August of 07.  The Revlimid and Dexamethasone has worked well and he is in near complete remission at this time.  Do take care and keep us posted.  Our thoughts and prayers are with you.Jan (we'vebeenthere)     wevebeenthere Sun, 27 Apr 2008 00:00:00 GMT  Good Morning: Sorry You husband is suffering. "webeenthere"has given you wonderful advice. I would add that the reason for the blood loss is as follows.  Multiple Myeloma interferes with the production of Red and White Blood Cells. These are made in the bone marrow. As the bone marrow cannot produce the needed daily blood cells, the HGB keeps dropping hence the low blood count or as yout put it, Loss of Blood.Blackstrap Molasses is a great blood cell builder and is natural so along with the B Vitamins, Procrit etc that were recommended in the last post, this can really help. You might want to consider adding Epicor to your husbands supplements.  I t is a natural immune system booster. Anytime you can boost the immune system, it will help with the production/function of the bone marrow and takes off the stress.  I wish you both well and trust things go well for you. mmsOn 4/27/2008 GAMBLER1 wrote:I am new to this web site but have found it very helpful.  My wonderful husband was diagnosed with multiple myeloma (Stage 3) in January 08.   He is taking Revlimid three times a week and has seen some improvements in Protein counts.  I am told this is very good.  He has had lots of side effects such as blood clots in his legs and lungs.  He is now on Lovenox which seems to be working as expected.  The other problem he has is loss of blood.  I haven't read about this problem from any of you.  I am curious if this is common.  He has had to have many transfusions.  He had 2 pints on March 17th and had to have another 2 pints on April 7th.  However, prior to this time he went 6 weeks and needed 1 pint.  This worries me.......can anyone give me some insite about this?   He also had the rash over his entire body except for his head.  After a month the rash has dissapeared.  Thanks for your concern.     Gambler 1    mmsurvivor Mon, 28 Apr 2008 00:00:00 GMT Dear Gambler 1,I need to correct a statement from my first message to you.  I told you that my husband's hemoglobin had to be kept above 8 because of a past heart attack.  The doctors actually keep his hemoglobin above 9 to cause less stress on his heart.  Take care.Jan (we'vebeen there)    wevebeenthere Mon, 28 Apr 2008 00:00:00 GMT