CancerCompass message board discussion started by jglan on 1/22/2008 http://www.cancercompass.com/message-board/message/all,19985,0.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/ Hi, I am new to the post and looking for any answers. My Dad is 66 and was just diagnosed with MM. 3 months ago we were mountain biking, swimming in big waves, and were a very active family and he seemed to be very healthy. In the last 4 weeks he started to get severe back pain which started the tests that led to being diagnosed. Well, we found out that 90-95% of his plasma cells are MM and he has one bone lesion on this sternum and 2 on different vertebrae. Because of the advanced stage they quickly started him on Valcade, Dex and Zometia along with Morphine and Vicodin for his back. Can anyone help with advice to relieve his back pain? The medication does little to help and he has a really hard time sleeping at night. I think that if we could get this under control it would really help him battle this disease. My other question is, what are his chances of bringing his MM % down and controlling this disease? We have read up a lot on MM and hear stories of people living years, but also of people dying in months. The number seems almost unbeatable and we are very scared. Any help or advice would be greatly appreciated. jglan Tue, 22 Jan 2008 00:00:00 GMT Had same problem: oxycontin 3 times in 24 hours and morphine every 3 and your doc can advise to go 4 oxy in 24 hours. Heat wraps did wonders for me.  My spine had lesions on every vertabrae and pain was something I could not describe...Did not take it all away but helped. I purchased at Wal Mart those wrap around body heat wraps you see on tv for bad backs and I left it on 24 hours before I needed another one. Hope this helps. Been there done that.  MMSOn 1/22/2008 jglan wrote:Hi, I am new to the post and looking for any answers. My Dad is 66 and was just diagnosed with MM. 3 months ago we were mountain biking, swimming in big waves, and were a very active family and he seemed to be very healthy. In the last 4 weeks he started to get severe back pain which started the tests that led to being diagnosed. Well, we found out that 90-95% of his plasma cells are MM and he has one bone lesion on this sternum and 2 on different vertebrae. Because of the advanced stage they quickly started him on Valcade, Dex and Zometia along with Morphine and Vicodin for his back. Can anyone help with advice to relieve his back pain? The medication does little to help and he has a really hard time sleeping at night. I think that if we could get this under control it would really help him battle this disease. My other question is, what are his chances of bringing his MM % down and controlling this disease? We have read up a lot on MM and hear stories of people living years, but also of people dying in months. The number seems almost unbeatable and we are very scared. Any help or advice would be greatly appreciated.  mmsurvivor Tue, 22 Jan 2008 00:00:00 GMT Hi jglan~~  Getting pain under control is one of the first steps once diagnosis has been established.  I initially had a couple of radiation zaps to my spine which immediately reduced the back pain.  Then they started me on codine/ordine/etc. tablets, none of which really worked but they did give me constipation.  Then I was put on the durogesic patches and these have been my saviour.  It was started at 25mg every 72 hours - the patch was changed every three days.  That was not enough, so after a few days I was put on 50mg, then it was upped to 100mgs.  Now after 4 years of gradual incriments, I'm on 300mg every 48 hours and this works.  It enables me to live a fairly normal lifestyle with occasional top ups of Ordine 10 when I have to make a long journey by car.  Many people shy away from pain medication, and feel that they will be classed as addicts, but when you are taking this stuff for cancer pain there are no 'high's' and it really does work to control only the pain.  Listen to what the pallative care doctors and nurses advise and you will find that they truly support  people taking regular pain meds so that they never get into extremely painful situations.  They advise that it is easier to control the pain continuously rather than trying to bring an horrendous pain situation under control!  I certainly agree.  I have five crush fractures in my spine and leisons on all my bones, including my skull, but I can sleep at night and rarely wake in pain.  Discuss this with your medical people and I'm sure that they will agree.  Good luck to you all, Cath poppy/cath Wed, 23 Jan 2008 00:00:00 GMT Generally speaking, MM is not a cureable disease with the possible exception of a stem cell transplant.  Because the SCT has a high mortality of its own, especially in the elderly, it is rarely an option.  Early treatments are often effective but the disease usually returns.  So it is a constant battle using different drugs to fight recurrences.  I agree pain control is essential for quality of life.  If the vertebral fractures are bad surgery (kyphoplasty) may be an option. Oncrx Wed, 23 Jan 2008 00:00:00 GMT Do you honestly believe that MM can be 'cured' with a transplant?? I have never seen any proof of this and in fact have been told that regardless of the treatment, there will always be Myeloma in my system - even if it can't be measured by the prevailing measuring options -- and that because of this it is imperative to continue treatment to keep me 'stable' with regard to my paraprotein level so that my other systems will not start to fail.  Basically it is my understanding that myeloma can not be cured and that real 'remission' does not occur with this form of cancer -- is this correct?  poppy/cath Wed, 23 Jan 2008 00:00:00 GMT Yes, I do.   Allo-SCT may be curative for 10-20% of patients with refractory multiple myeloma and a larger proportion of patients who are transplanted early in their disease course. The key is the allo transplant and the intense pre transplant treatment.  Again, this is not for everyone.  Generally useful in patient under 65 who are healthy and where the disease has been caught early.  Unfortunately, thats not mant patients. Oncrx Thu, 24 Jan 2008 00:00:00 GMT Thanks for responding Oncrx.  Can you please explain to me just who you are and what your role is here on the MM message board?  Many thanks, Cath poppy/cath Fri, 25 Jan 2008 00:00:00 GMT  On 1/24/2008 Oncrx wrote:Yes, I do.   Allo-SCT may be curative for 10-20% of patients with refractory multiple myeloma and a larger proportion of patients who are transplanted early in their disease course. The key is the allo transplant and the intense pre transplant treatment.  Again, this is not for everyone.  Generally useful in patient under 65 who are healthy and where the disease has been caught early.  Unfortunately, thats not mant patients.Good Evening Oncrx;How early do you mean? And does it matter at what stage their Dx is? I understand that Stage I is not as severe as Stage III, but will the effect be the same on the MM?Would you also describe what you mean by the intense pre transplant treatment? What is the normal routine prior to the "harvest?"Thank you;Kevin   K. C. Fri, 25 Jan 2008 00:00:00 GMT  On 1/23/2008 poppy/cath wrote:Do you honestly believe that MM can be 'cured' with a transplant?? I have never seen any proof of this and in fact have been told that regardless of the treatment, there will always be Myeloma in my system - even if it can't be measured by the prevailing measuring options -- and that because of this it is imperative to continue treatment to keep me 'stable' with regard to my paraprotein level so that my other systems will not start to fail.  Basically it is my understanding that myeloma can not be cured and that real 'remission' does not occur with this form of cancer -- is this correct? Good Evening Cath;My research tells me that this is what makes all cancers so difficult to cure. The fact that the cells multiply so darn quickly. Even if the Drs. miss just one, give it some time and you're back to being in the hospital.However, with this new drug MAPATUMUMAB or FUCOIDEN causing apoptosis (programmed cell death) perhaps this will be the answer to those cells that escape the traditional chemotherapy. We can only hope!Take care;Kevin   K. C. Fri, 25 Jan 2008 00:00:00 GMT  There have been some studies that suggested earlier transplants led to better results.  Other than that, I dont think the stage really matters.  The prep for transplant has typically been HD chemo and TBI.  Very hard on the body which is why older patients are often not candidates.  Studies that looked at reduced intensity preps tended to show better tolerence but no increase in survival.  The tandem autologous, reduced intensity allogeneic transplant regimen looks very promising in terms of low mortality and high response rates.  The point is that SCT for younger, healthy MM patients is an option that should be explored.  I agree that in the absence of a SCT, MM is not really a cureable disease.   Oncrx Mon, 28 Jan 2008 00:00:00 GMT Hi,  My husband has had multiple myeloma since June of 2007, he was 57 at the time.  He has been through the same things as your father.  For his back pain, he was fitted  with a custom made back brace through Orthomedics in Kearney Ne.  This brace was molded and made especially to his body.  He was unable to take strong pain medications due to other health issues and surgery was not an option because of the compromised bones issues with myeloma.  He used the brace for about a month and it really helped the pain.  After a month he no longer needed the brace.  For myeloma,  his doctor started him on revlimid 25 mg, an oral medication taken once daily for 21 days then 7 days off then start the cycle over.  He also takes low dose dexamethasone 4 mg, also an oral medication, 10 tablets once a week.  Our family doctor said that he had never seen proteins as high as my husband had when he started treatment.  He has now been through 6 months of treatments and is in remission.  When the treatments were started, his creatinine went up due to the fact that his body could not break down the m proteins fast enough.  This can lead to kidney failure.  He was started on allopurinol 300 mg once daily to aid the break down process and his creatinine went back to normal.  Hope this helps you.  Ask your doctor about this information.  Maybe it will help your father. wevebeenthere Mon, 28 Jan 2008 00:00:00 GMT  On 1/28/2008 wevebeenthere wrote:Hi,  My husband has had multiple myeloma since June of 2007, he was 57 at the time.  He has been through the same things as your father.  For his back pain, he was fitted  with a custom made back brace through Orthomedics in Kearney Ne.  This brace was molded and made especially to his body.  He was unable to take strong pain medications due to other health issues and surgery was not an option because of the compromised bones issues with myeloma.  He used the brace for about a month and it really helped the pain.  After a month he no longer needed the brace.  For myeloma,  his doctor started him on revlimid 25 mg, an oral medication taken once daily for 21 days then 7 days off then start the cycle over.  He also takes low dose dexamethasone 4 mg, also an oral medication, 10 tablets once a week.  Our family doctor said that he had never seen proteins as high as my husband had when he started treatment.  He has now been through 6 months of treatments and is in remission.  When the treatments were started, his creatinine went up due to the fact that his body could not break down the m proteins fast enough.  This can lead to kidney failure.  He was started on allopurinol 300 mg once daily to aid the break down process and his creatinine went back to normal.  Hope this helps you.  Ask your doctor about this information.  Maybe it will help your father.Good Evening WBT;Reading your post re: your husband was like looking back at my Dx. and Tx. The only exceptions being I'm slightly younger (49) and I also take Velcade injections and my Dr. had me on 14 day of 21 day cycles.How high was your husband's numbers at Dx? From what you're describing he was probably Stage III. This drop to remission is quite remarkable in this time period! Very good news! Was he offered a stem cell transplant? What is he taking now? Any maintenance therapy? They can reduce the Rev/Dex/Vel to lower levels just to maintain the lower numbers.Take care;Kevin  K. C. Mon, 28 Jan 2008 00:00:00 GMT  On 1/28/2008 Oncrx wrote: There have been some studies that suggested earlier transplants led to better results.  Other than that, I dont think the stage really matters.  The prep for transplant has typically been HD chemo and TBI.  Very hard on the body which is why older patients are often not candidates.  Studies that looked at reduced intensity preps tended to show better tolerence but no increase in survival.  The tandem autologous, reduced intensity allogeneic transplant regimen looks very promising in terms of low mortality and high response rates.  The point is that SCT for younger, healthy MM patients is an option that should be explored.  I agree that in the absence of a SCT, MM is not really a cureable disease.  Good Evening Oncrx;"HD chemo and TBI."High Dose Chemo but what is TBI?Do you have any statistics to support the survival rates vs. the mortality rates for the younger patients?Thank you;Kevin  K. C. Mon, 28 Jan 2008 00:00:00 GMT  On 1/28/2008 K. C. wrote: On 1/28/2008 wevebeenthere wrote:Hi,  My husband has had multiple myeloma since June of 2007, he was 57 at the time.  He has been through the same things as your father.  For his back pain, he was fitted  with a custom made back brace through Orthomedics in Kearney Ne.  This brace was molded and made especially to his body.  He was unable to take strong pain medications due to other health issues and surgery was not an option because of the compromised bones issues with myeloma.  He used the brace for about a month and it really helped the pain.  After a month he no longer needed the brace.  For myeloma,  his doctor started him on revlimid 25 mg, an oral medication taken once daily for 21 days then 7 days off then start the cycle over.  He also takes low dose dexamethasone 4 mg, also an oral medication, 10 tablets once a week.  Our family doctor said that he had never seen proteins as high as my husband had when he started treatment.  He has now been through 6 months of treatments and is in remission.  When the treatments were started, his creatinine went up due to the fact that his body could not break down the m proteins fast enough.  This can lead to kidney failure.  He was started on allopurinol 300 mg once daily to aid the break down process and his creatinine went back to normal.  Hope this helps you.  Ask your doctor about this information.  Maybe it will help your father.Good Evening WBT;Reading your post re: your husband was like looking back at my Dx. and Tx. The only exceptions being I'm slightly younger (49) and I also take Velcade injections and my Dr. had me on 14 day of 21 day cycles.How high was your husband's numbers at Dx? From what you're describing he was probably Stage III. This drop to remission is quite remarkable in this time period! Very good news! Was he offered a stem cell transplant? What is he taking now? Any maintenance therapy? They can reduce the Rev/Dex/Vel to lower levels just to maintain the lower numbers.Take care;KevinK.C.,The numbers that I can find right off hand are total protein UR 2139 from 24 hour urine and serum protein of 12.7.  HGB in the 8 range.  He has not ever taken velcade.  As for a lower dose of revlimid/dexamethasone, we don't have an answer to that.  The medication is so new that the studies have not gotten to that point yet.  We hope to find out when we see the Omaha doctor in the near future.  They are talking about a stem cell transplant.  I know that they will want to harvest stem cells while his counts are good, but that is as far as we have gotten.  He has a lot of other health issues that we have had to deal with besides the myeloma and this has really been a roller coaster ride trying to get to this point.  I can't find a lot of information as to when or if the rev/dex dose is ever lowered.  Don't know if that has ever been done.  His meds right now are rev/dex, allpurinol, and zometa (every 4 weeks).  If you find any information about lower dose rev/dex, I'd like to see it.  Good Luck!      WBE    wevebeenthere Mon, 28 Jan 2008 00:00:00 GMT KevinSorry about the abbreviations.  TBI= total body irradiation.  I think this article is a good review.  Under "summary",  the authors mention the possibility of a cure with STC in appropriate patients.  The tandem transplant study showed a complete remission rate of 51% although the study was small.  Anyway, exciting stuff and I think more to come in this area of MM.http://professional.cancerconsultants.com/current_oncology.a Oncrx Tue, 29 Jan 2008 00:00:00 GMT Don't give up on having a stem cell transplant because of age!!!  My husband had one at age 72.  Your dad sounds like he has been in good health up til now.  Contact Duke University in Durham, NC.  They look at overall health rather than just age. Nelle Thu, 07 Feb 2008 00:00:00 GMT  On 1/28/2008 wevebeenthere wrote: On 1/28/2008 K. C. wrote: On 1/28/2008 wevebeenthere wrote:Hi,  My husband has had multiple myeloma since June of 2007, he was 57 at the time.  He has been through the same things as your father.  For his back pain, he was fitted  with a custom made back brace through Orthomedics in Kearney Ne.  This brace was molded and made especially to his body.  He was unable to take strong pain medications due to other health issues and surgery was not an option because of the compromised bones issues with myeloma.  He used the brace for about a month and it really helped the pain.  After a month he no longer needed the brace.  For myeloma,  his doctor started him on revlimid 25 mg, an oral medication taken once daily for 21 days then 7 days off then start the cycle over.  He also takes low dose dexamethasone 4 mg, also an oral medication, 10 tablets once a week.  Our family doctor said that he had never seen proteins as high as my husband had when he started treatment.  He has now been through 6 months of treatments and is in remission.  When the treatments were started, his creatinine went up due to the fact that his body could not break down the m proteins fast enough.  This can lead to kidney failure.  He was started on allopurinol 300 mg once daily to aid the break down process and his creatinine went back to normal.  Hope this helps you.  Ask your doctor about this information.  Maybe it will help your father.Good Evening WBT;Reading your post re: your husband was like looking back at my Dx. and Tx. The only exceptions being I'm slightly younger (49) and I also take Velcade injections and my Dr. had me on 14 day of 21 day cycles.How high was your husband's numbers at Dx? From what you're describing he was probably Stage III. This drop to remission is quite remarkable in this time period! Very good news! Was he offered a stem cell transplant? What is he taking now? Any maintenance therapy? They can reduce the Rev/Dex/Vel to lower levels just to maintain the lower numbers.Take care;KevinK.C.,The numbers that I can find right off hand are total protein UR 2139 from 24 hour urine and serum protein of 12.7.  HGB in the 8 range.  He has not ever taken velcade.  As for a lower dose of revlimid/dexamethasone, we don't have an answer to that.  The medication is so new that the studies have not gotten to that point yet.  We hope to find out when we see the Omaha doctor in the near future.  They are talking about a stem cell transplant.  I know that they will want to harvest stem cells while his counts are good, but that is as far as we have gotten.  He has a lot of other health issues that we have had to deal with besides the myeloma and this has really been a roller coaster ride trying to get to this point.  I can't find a lot of information as to when or if the rev/dex dose is ever lowered.  Don't know if that has ever been done.  His meds right now are rev/dex, allpurinol, and zometa (every 4 weeks).  If you find any information about lower dose rev/dex, I'd like to see it.  Good Luck!      WBE  K.C.I need to add to this message that my husband is in "near complete remission".  He still has light chains at .7, down from 5.5 back in June.  They are presently holding steady since December.  He also takes Zometa, 4 mg, every 4 weeks.  His other labs and bone marrow biopsy are normal.  Thanks for responding to my other message.  Any information I can get helps.  Take care.WBT   wevebeenthere Mon, 25 Feb 2008 00:00:00 GMT Hello Oncrx -- Several messages ago, in late January, I sent you a message asking YOU just who you are and what are your qualifications for answering the questions which are being asked.  Unfortunately, I have had a bit of a blip in my own health, and I may have missed the answer to my message.  So, could you please take a minute now and just bring me up to date with who your are and what your specific role here on the MM board is all about?  Many thanks, I'm certainly looking forward to reading your reply.Cath poppy/cath Wed, 05 Mar 2008 00:00:00 GMT