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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.

 

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

 

 

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

 

 

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;

Kevin

K.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  

 

Kevin

Sorry 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

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.

 

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;

Kevin

K.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

 

 

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