CancerCompass message board discussion started by ozy31 on 5/1/2008 http://www.cancercompass.com/message-board/message/all,23643,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ This is for Jan (webeenthere) My husband had plasmacytoma and went into multple myeloma inMarch of 08,  We just finished the revlimid, 28 days with dex once aweek, 20mg.  So far only an extreme hyper personality and can't sleepand seem to come down to earth.  Except this week, he is only takingthe 20mg.dex.  Can you tell me how old your husband is?  My is 77 yrs.and doing fairly well.  He is being treated by a hematologist at the MayoClinic.  Where are you being treated?  If you don't mind telling more about your experiences, that would be great.Thank you,ozy (a newbee to this disease)  ozy31 Thu, 01 May 2008 00:00:00 GMT  On 5/1/2008 ozy31 wrote:This is for Jan (webeenthere) My husband had plasmacytoma and went into multple myeloma inMarch of 08,  We just finished the revlimid, 28 days with dex once aweek, 20mg.  So far only an extreme hyper personality and can't sleepand seem to come down to earth.  Except this week, he is only takingthe 20mg.dex.  Can you tell me how old your husband is?  My is 77 yrs.and doing fairly well.  He is being treated by a hematologist at the MayoClinic.  Where are you being treated?  If you don't mind telling more about your experiences, that would be great.Thank you,ozy (a newbee to this disease) Dear Ozy,My husband is 58 years old.  In April of 07 he had a nose bleed and went to the emergency room.  Blood work that day showed a hemoglobin of 10.  Our family doc started him on iron.  In May of 07 he was admited to the hospital with a bad headache and blood work then showed his hemoglobin had dropped to 8.  Our family doctor started running tests and found myeloma.  At that point he had no bone involvement showing on the full body xrays.  He was started on Dexamethasone, 40 mg, daily for 4 days, then off for 3 days, then dex for 4 days, then off for 3 days.  He did that for one month, with no improvement.  The doctor then started him on Revlimid, 25 mg, 21 days on the med and 7 days off, plus he takes dexamethasone, 40 mg, one day a week.  This combination has worked well and he is in "near complete remission" at this time.  About six weeks after we found out he has myeloma, he started having back pain and they found he had compression fractures of the T- 6 & 7.  He was fitted with a brace for his back and wore that for about a month, his back healed and so far he has had no more problems.  He also had 2 plasma cell masses in his abdomen, but they are gone now, due to the Revlimid and dex.He is being treated in Kearney, Nebraska and also at the University of Nebraska Medical Center.  Our experiences are quite different from other myeloma patients in that my husband has many other health issues.  He has had B-cell lymphoma, he has Crohn's disease, he has a clotting disorder, he has had a heart attack (4 years ago) and in the middle of trying to deal with myeloma, he had to have emergency hernia repair.  In the beginning, he was getting 2 units of blood a week (for about a month) to keep his hemoglobin above 9, to ease the stress on his heart.  He now takes procrit shots, 40,000 units, every two weeks and vitimin B-12 shots once a month.  Those meds have helped keep his blood counts up.  He also gets Zometa in an I.V. every 4 weeks to strengthen his bones.  There are many people on this site that have used natural products that have helped them with their myeloma.  We have to be very careful and research natural products, because of my husband's Crohns and the blood thinners he takes, so our experience is mostly with prescription meds.  If you are interested in natural products, I'm sure there are many on this site who will be glad to help you.  I thought I had found the ideal natural product in curcumin (curry powder) until my research found that it is also a blood thinner and should not be taken by those taking blood thinners.  The people on this site are great and have way more knowledge than I have.  They are very willing to help and share their knowledge.  They have really helped answer a lot of my questions.  You husband's hyper activity may be caused by the dexamethasone.  My husband is the same way on the day he takes dex.  Your doctor should be able to help with that, if you ask.  Let me know if there is anything else I can help you with.  Take care & God bless.Jan      wevebeenthere Thu, 01 May 2008 00:00:00 GMT To: Jan (wevebeenthere) Thanks for your prompt reply, boy have you ever been there.  We are solucky that so far no major events of real pain or hospitalizations.  It isgreat to know there are people out there that can help with their ex-periences.  We are getting our revlimid thru the Veterans Health Careif there are other veterans out there.  Jan:  Keep your chin up and know we are thinking of you.  ozy31 Fri, 02 May 2008 00:00:00 GMT Dear Ozy31,Sorry to hear about your husband, but it sounds like he's doing pretty well, all things considered. My dad was diagnosed with Multiple Myeloma this past November -- and is 77 also. He is Stage III with much bone involvement/damage, but about six months into this now, happy to say he is doing much better. I am so glad you just mentioned that about Revlamid and the Veterans Association. My dad was a vet long ago and i was just recently looking into getting him additional coverage thru them as a back up, i have the applications almost filled out and am rounding up the required paperwork, etc. (i was worried about him being turned down at first, because i read in the booklet that for the past few years, due to high demand/so many vets, they can no longer take anyone that is in the lower categories -- but he has two purple hearts, so i think that is going to be his saving grace). Anyway, his treatment is currently Velcade - he is just starting his 4th cycle/round of it, and thankfully, the cancer is still responding to it. However, i have been worrying about the time when one day he may go on maintenance, or when the myeloma comes active again, and he might have to go on Revlamid or one of the other crazy-expensive medicines -- which are completely unaffordable for him even with his medical insurance/coverage... but i'm so glad to hear you say that the Vet Assoc. is covering his Revlamid. Do you know if they completely cover it, or does he pay a large co-pay, etc?  Any info would be appreciated.  Thank you & best of luck!   DebJr Sat, 03 May 2008 00:00:00 GMT  On 5/3/2008 DebJr wrote:Dear Ozy31,Sorry to hear about your husband, but it sounds like he's doing pretty well, all things considered. My dad was diagnosed with Multiple Myeloma this past November -- and is 77 also. He is Stage III with much bone involvement/damage, but about six months into this now, happy to say he is doing much better. I am so glad you just mentioned that about Revlamid and the Veterans Association. My dad was a vet long ago and i was just recently looking into getting him additional coverage thru them as a back up, i have the applications almost filled out and am rounding up the required paperwork, etc. (i was worried about him being turned down at first, because i read in the booklet that for the past few years, due to high demand/so many vets, they can no longer take anyone that is in the lower categories -- but he has two purple hearts, so i think that is going to be his saving grace). Anyway, his treatment is currently Velcade - he is just starting his 4th cycle/round of it, and thankfully, the cancer is still responding to it. However, i have been worrying about the time when one day he may go on maintenance, or when the myeloma comes active again, and he might have to go on Revlamid or one of the other crazy-expensive medicines -- which are completely unaffordable for him even with his medical insurance/coverage... but i'm so glad to hear you say that the Vet Assoc. is covering his Revlamid. Do you know if they completely cover it, or does he pay a large co-pay, etc?  Any info would be appreciated.  Thank you & best of luck!  Hi Deb Jr.Sorry to have taken so long to get back to you.  Because my husbandhas been on the VA program for about 5 years, we called from Mayo and they said they would cooperate with VA.  Revlimid costs the gov about$8,000.00 per month but we get it for the usual $8.00/month.  So far wehave not seen any bills for it.  The dexamethasone is also $8.00/mo.  I am sure if your dad has purple hearts and that means he was in combat, you will not have any trouble getting him on the VA health program.  We have to go once a month to the nearest facility that is allowed to dispense this new drug, as I understand it, the clinics are not allowed to dispense it yet.  It is rather dangerous for pregnant women so there is a lot of precaution taken to make sure it is not exposed to pregnant women which is not a concern for us or your dad but it could be for a younger man.  There are some side effects but not as many as I thought, just some fatigue which is normal for this drug,  The dexamethasone make him hyper on the days he takes that and also make his sugar levels go up, he is a diabetic also.  Good luck finding and getting approved for this drug if necessary, our VA doctor says they are hoping this drug is a home run for people with multple myeloma.Doing great so farozy31 h   ozy31 Mon, 19 May 2008 00:00:00 GMT  On 5/3/2008 DebJr wrote:Dear Ozy31,Sorry to hear about your husband, but it sounds like he's doing pretty well, all things considered. My dad was diagnosed with Multiple Myeloma this past November -- and is 77 also. He is Stage III with much bone involvement/damage, but about six months into this now, happy to say he is doing much better. I am so glad you just mentioned that about Revlamid and the Veterans Association. My dad was a vet long ago and i was just recently looking into getting him additional coverage thru them as a back up, i have the applications almost filled out and am rounding up the required paperwork, etc. (i was worried about him being turned down at first, because i read in the booklet that for the past few years, due to high demand/so many vets, they can no longer take anyone that is in the lower categories -- but he has two purple hearts, so i think that is going to be his saving grace). Anyway, his treatment is currently Velcade - he is just starting his 4th cycle/round of it, and thankfully, the cancer is still responding to it. However, i have been worrying about the time when one day he may go on maintenance, or when the myeloma comes active again, and he might have to go on Revlamid or one of the other crazy-expensive medicines -- which are completely unaffordable for him even with his medical insurance/coverage... but i'm so glad to hear you say that the Vet Assoc. is covering his Revlamid. Do you know if they completely cover it, or does he pay a large co-pay, etc?  Any info would be appreciated.  Thank you & best of luck!  Hi Deb Jr.Sorry to have taken so long to get back to you.  Because my husbandhas been on the VA program for about 5 years, we called from Mayo and they said they would cooperate with VA.  Revlimid costs the gov about$8,000.00 per month but we get it for the usual $8.00/month.  So far wehave not seen any bills for it.  The dexamethasone is also $8.00/mo.  I am sure if your dad has purple hearts and that means he was in combat, you will not have any trouble getting him on the VA health program.  We have to go once a month to the nearest facility that is allowed to dispense this new drug, as I understand it, the clinics are not allowed to dispense it yet.  It is rather dangerous for pregnant women so there is a lot of precaution taken to make sure it is not exposed to pregnant women which is not a concern for us or your dad but it could be for a younger man.  There are some side effects but not as many as I thought, just some fatigue which is normal for this drug,  The dexamethasone make him hyper on the days he takes that and also make his sugar levels go up, he is a diabetic also.  Good luck finding and getting approved for this drug if necessary, our VA doctor says they are hoping this drug is a home run for people with multple myeloma.Doing great so farozy31 h   ozy31 Mon, 19 May 2008 00:00:00 GMT