How long are you on Chemotherapy before the Doctor checks to see if it is working?

Does the Doctor need to do another bone marrow biopsy to see if the initial therapy is working. When does the stem cell transplant come into the plan of action. When the treatment is working or when the treatment is not working? Can a person go into remission without a stem cell transplant? Thank you Juli

I was diagnosed 4/12 started Rev/dex/valcade . First Bone marrow biopsy in June, 85% of marrow was effected. Had 12 radiation sessions. Second biopsy was Dec of 2012 and was in remission. Came off everything and received 1 dose of iv chemo to prepare for stem cell harvest. Went back on everything in May.; Had another Biopsy in Dec and still in remission.; My doctor feels that as long as they can keep me in remission we are not going to have to ever have transplant but if I ever do they have my cell to transplant . My dr feels that with all the new drugs coming out I may never need a transplant.

Help this helps

Depends, I started a low dose maintenance chemo regiment against doctors wishes in August 2012. One doctor wanted me to start with a double transplant. 2nd opinion said try low dose for 4 months and review results. Went from 10% to 4% to 1% no transplant yet, stopped chemo in Aug. have always been in excellent shape …185 lbs 5’11 and shrinking, …69 yrs young in 54 days. …

Stopped chemo last august after 11 months. Doctors warn to get transplant soon while % is low and before kidney problems begin or number start back up ect, then I may no longer be elegible for transplant. Got cells harvested in prep for transplant= refridgerator for 10 years+ in case % begin to climb and I need a quick transplant.
A lot seems to depend on your health condition before the diagnosis. It is a fight and you want to be in good shape to begin. So I prepared for an Olympic bout for 4 months before I began the chemo. Doctors say I had a complete response. Last biopsy less than 1%. And the still want me to continue for a total of 18 months of chemo…did VCD…Velcade, Cyclo, Dex.

Hi Juli. The course of treatment will depend on many factors, including what stage the disease is in and age/condition of the patient. To answer your questions, I think in most cases there will be a 2nd bone marrow biopsy at the conclusion of treatment to determine how complete the remission is. It is possible to go into remission without a stem cell transplant, in fact for the most common type of transplant - autologous, where they use your own stem cells so there is very low risk involved - you normally need to be in at least a Very Good Partial remission before they will collect your stem cells (which is a very simple procedure, like being a pheresis blood donor). It seems there is some discussion among doctors and researchers whether the added time until relapse that SCT seems to provide is valid but I believe that when the patient is in good enough condition, it remains the international standard of treatment, in combination with chemo. I should mention that the "transplant" is pretty anti-climactic, it's simply administered intravenously in about an hour while you're in the hospital, like getting a pouch of blood. The high-dose chemo that precedes it can be a bit rough, mainly nausea/vomiting and mouth sores but by chewing ice chips for half an hour before and all during the infusion, and continuing for 15 minutes after, these sores can often be avoided. It worked for me. The nausea can be mostly controlled with meds, though I did have a couple days of vomiting but otherwise felt okay. I never experienced the severe fatigue that some patients have for a week to a couple of months following this chemo, guess I was lucky.

I was diagnosed a year ago, initial bone marrow biopsy showed 60% of marrow affected. Have just finished a long course of treatment in a clinical trial: 4 months chemo consisting of carfilzomib/thalidomide/dexamethasone, stem cell collection preceded by high-dose cyclophosphamide, a month later stem cell transplant preceded by 2 days of high-dose melphalan, and finally 4 more months of car/tha/dex. I will have my 2nd bone marrow biopsy next month to assess how deep my remission is. Then I'll have one annually. I don't know if this is the normal procedure or if I'll have them more frequently than one normally would because I'm in a trial and they need to gather information.

All through my treatment, I had blood drawn every week, and tested for m-proteins which is in most cases a very good indicator of myeloma activity; mine had already dropped significantly after the first cycle of chemo and even before stem cell transplant I was in a Near Complete Response. Another tool used to measure your response to treatment is the 24-hour urine catch, this is an accurate measurement of the existence of free light chains whose presence indicate myeloma activity. I had this test done the week before treatment began and after the 2nd cycle of chemo. Although I had a high reading at the outset, there were no free light chains detected after the 2nd cycle so I didn't have that test again until the start of my final cycle of consolidation chemo (which followed transplant); happily that value remains "undetectable".

Hi Juli , We all are different and each medical facility has their own way of doing things. For me they did the extensive blood work monthly in the beginning. Now that I have had a transplant and am on maintenance therapy they do it every 6 weeks. They had done a total blood counts weekly as long as I was on Velcade, Revlimid and Dexamethasone. The Velcade is hard on you blood count, so things must be watched very closely while you receive it. When they do the extensive test they look at many things, the ones I know about are the M protein, the Igg and the light chains all of these are marker items that are relative to multiple myeloma. The m protein is a part of MM and can be detected in the blood, normal is zero, most times the Igg runs high in MM patients as part of it is related to MM, the light chains are complex so I let my doctor handle their iterpretation . I do know that I am on revlimid and a small dose of dex because of the light chains.

My doctor explained to me that treatment of MM is in trends, not an instant .Yes can get into remission without a transplant, however I feel they will want to do a transplant either way as it is the most significant way to achieve a long term response. However it is never cured.

I just took the time to read the other responses, They are all super good advice from experienced people, as you can see each one of us has had different treatments and experiences. I do not know the extent of my marrow's involvement,I watched the m protein. I do not have any bone damage, or very little. My kidneys have not been involved and function normally. I was close to remission 45 days before the transplant however it made a significant jump right at the time of transplant, so the dr. considers mine to be very aggressive. During the 12 months following the transplant while I received maintenance therapy it responded much better than they expected and I have achieved what they consider to be remission, however he wants it to be stringent remission, so the light chains got to go, even though they can not quantify them as they are so small a level. I knew the doctor that diagnosed what I had, as he was my dr for 16 years of follow up visits from hodgekins . He has since retired, however his advice still runs true today, have strong faith that all is well with the world, don't worry my friend. You will be Ok..

Rodney



rodney said:

Hi Juli , We all are different and each medical facility has their own way of doing things. For me they did the extensive blood work monthly in the beginning. Now that I have had a transplant and am on maintenance therapy they do it every 6 weeks. They had done a total blood counts weekly as long as I was on Velcade, Revlimid and Dexamethasone. The Velcade is hard on you blood count, so things must be watched very closely while you receive it. When they do the extensive test they look at many things, the ones I know about are the M protein, the Igg and the light chains all of these are marker items that are relative to multiple myeloma. The m protein is a part of MM and can be detected in the blood, normal is zero, most times the Igg runs high in MM patients as part of it is related to MM, the light chains are complex so I let my doctor handle their iterpretation . I do know that I am on revlimid and a small dose of dex because of the light chains.

My doctor explained to me that treatment of MM is in trends, not an instant .Yes can get into remission without a transplant, however I feel they will want to do a transplant either way as it is the most significant way to achieve a long term response. However it is never cured.

I just took the time to read the other responses, They are all super good advice from experienced people, as you can see each one of us has had different treatments and experiences. I do not know the extent of my marrow's involvement,I watched the m protein. I do not have any bone damage, or very little. My kidneys have not been involved and function normally. I was close to remission 45 days before the transplant however it made a significant jump right at the time of transplant, so the dr. considers mine to be very aggressive. During the 12 months following the transplant while I received maintenance therapy it responded much better than they expected and I have achieved what they consider to be remission, however he wants it to be stringent remission, so the light chains got to go, even though they can not quantify them as they are so small a level. I knew the doctor that diagnosed what I had, as he was my dr for 16 years of follow up visits from hodgekins . He has since retired, however his advice still runs true today, have strong faith that all is well with the world, don't worry my friend. You will be Ok..

Rodney



Looper said:

Juli, Rodney makes some points quite eloquently, especially that each person’s treatment protocol will be different and that each facility’s approach will be different.

I cannot speak to your first question but as to whether or not can you go into remission before stem cell transplant(s), the answer is yes. I had 80% plasma cellularity and heavy bone involvement in 2005 when initially diagnosed. After one round of front-line chemo with Velcade I was in remission. Had another round of chemo and 2 autologous stem cell transplants. I was treated at Univ of Arkansas where they strongly believe in hitting it hard to provide for opportunity for longest possible remission. Given I was 42 at time of diagnosis and in good health otherwise, they wanted to stamp on the myeloma quite hard and so had me on clinical trial called Total Therapy 3---2 rounds chemo, 2 transplants, and 2 backend maintenance rounds of chemo. I stayed in remission until last month---so 9 years.

Usually stem cell comes in after one or 2 rounds of chemo. whether they recommend any, 1 or 2 transplants is somewhat a matter of the person as well as the propensity of the facility you are receiving treatment at.



rodney said:

Hi Juli , We all are different and each medical facility has their own way of doing things. For me they did the extensive blood work monthly in the beginning. Now that I have had a transplant and am on maintenance therapy they do it every 6 weeks. They had done a total blood counts weekly as long as I was on Velcade, Revlimid and Dexamethasone. The Velcade is hard on you blood count, so things must be watched very closely while you receive it. When they do the extensive test they look at many things, the ones I know about are the M protein, the Igg and the light chains all of these are marker items that are relative to multiple myeloma. The m protein is a part of MM and can be detected in the blood, normal is zero, most times the Igg runs high in MM patients as part of it is related to MM, the light chains are complex so I let my doctor handle their iterpretation . I do know that I am on revlimid and a small dose of dex because of the light chains.

My doctor explained to me that treatment of MM is in trends, not an instant .Yes can get into remission without a transplant, however I feel they will want to do a transplant either way as it is the most significant way to achieve a long term response. However it is never cured.

I just took the time to read the other responses, They are all super good advice from experienced people, as you can see each one of us has had different treatments and experiences. I do not know the extent of my marrow's involvement,I watched the m protein. I do not have any bone damage, or very little. My kidneys have not been involved and function normally. I was close to remission 45 days before the transplant however it made a significant jump right at the time of transplant, so the dr. considers mine to be very aggressive. During the 12 months following the transplant while I received maintenance therapy it responded much better than they expected and I have achieved what they consider to be remission, however he wants it to be stringent remission, so the light chains got to go, even though they can not quantify them as they are so small a level. I knew the doctor that diagnosed what I had, as he was my dr for 16 years of follow up visits from hodgekins . He has since retired, however his advice still runs true today, have strong faith that all is well with the world, don't worry my friend. You will be Ok..

Rodney

Thank you Juli

Karen said:

I was diagnosed 4/12 started Rev/dex/valcade . First Bone marrow biopsy in June, 85% of marrow was effected. Had 12 radiation sessions. Second biopsy was Dec of 2012 and was in remission. Came off everything and received 1 dose of iv chemo to prepare for stem cell harvest. Went back on everything in May.; Had another Biopsy in Dec and still in remission.; My doctor feels that as long as they can keep me in remission we are not going to have to ever have transplant but if I ever do they have my cell to transplant . My dr feels that with all the new drugs coming out I may never need a transplant.

Help this helps

It sounds like your second opinion was a great move on your part. Thank you Juli
Mazbro4 said:

Depends, I started a low dose maintenance chemo regiment against doctors wishes in August 2012. One doctor wanted me to start with a double transplant. 2nd opinion said try low dose for 4 months and review results. Went from 10% to 4% to 1% no transplant yet, stopped chemo in Aug. have always been in excellent shape ...185 lbs 5'11 and shrinking, ..69 yrs young in 54 days. ..
Stopped chemo last august after 11 months. Doctors warn to get transplant soon while % is low and before kidney problems begin or number start back up ect, then I may no longer be elegible for transplant. Got cells harvested in prep for transplant= refridgerator for 10 years+ in case % begin to climb and I need a quick transplant.
A lot seems to depend on your health condition before the diagnosis. It is a fight and you want to be in good shape to begin. So I prepared for an Olympic bout for 4 months before I began the chemo. Doctors say I had a complete response. Last biopsy less than 1%. And the still want me to continue for a total of 18 months of chemo...did VCD..Velcade, Cyclo, Dex.



Tammy said:

Hi Juli. The course of treatment will depend on many factors, including what stage the disease is in and age/condition of the patient. To answer your questions, I think in most cases there will be a 2nd bone marrow biopsy at the conclusion of treatment to determine how complete the remission is. It is possible to go into remission without a stem cell transplant, in fact for the most common type of transplant - autologous, where they use your own stem cells so there is very low risk involved - you normally need to be in at least a Very Good Partial remission before they will collect your stem cells (which is a very simple procedure, like being a pheresis blood donor). It seems there is some discussion among doctors and researchers whether the added time until relapse that SCT seems to provide is valid but I believe that when the patient is in good enough condition, it remains the international standard of treatment, in combination with chemo. I should mention that the "transplant" is pretty anti-climactic, it's simply administered intravenously in about an hour while you're in the hospital, like getting a pouch of blood. The high-dose chemo that precedes it can be a bit rough, mainly nausea/vomiting and mouth sores but by chewing ice chips for half an hour before and all during the infusion, and continuing for 15 minutes after, these sores can often be avoided. It worked for me. The nausea can be mostly controlled with meds, though I did have a couple days of vomiting but otherwise felt okay. I never experienced the severe fatigue that some patients have for a week to a couple of months following this chemo, guess I was lucky.

I was diagnosed a year ago, initial bone marrow biopsy showed 60% of marrow affected. Have just finished a long course of treatment in a clinical trial: 4 months chemo consisting of carfilzomib/thalidomide/dexamethasone, stem cell collection preceded by high-dose cyclophosphamide, a month later stem cell transplant preceded by 2 days of high-dose melphalan, and finally 4 more months of car/tha/dex. I will have my 2nd bone marrow biopsy next month to assess how deep my remission is. Then I'll have one annually. I don't know if this is the normal procedure or if I'll have them more frequently than one normally would because I'm in a trial and they need to gather information.

All through my treatment, I had blood drawn every week, and tested for m-proteins which is in most cases a very good indicator of myeloma activity; mine had already dropped significantly after the first cycle of chemo and even before stem cell transplant I was in a Near Complete Response. Another tool used to measure your response to treatment is the 24-hour urine catch, this is an accurate measurement of the existence of free light chains whose presence indicate myeloma activity. I had this test done the week before treatment began and after the 2nd cycle of chemo. Although I had a high reading at the outset, there were no free light chains detected after the 2nd cycle so I didn't have that test again until the start of my final cycle of consolidation chemo (which followed transplant); happily that value remains "undetectable".



juli said: Thank you for sharing the great information. I am learning more and more every day. I appreciate you taking your time to give such a detailed answer. Juli



Tammy said:

Hi Juli. The course of treatment will depend on many factors, including what stage the disease is in and age/condition of the patient. To answer your questions, I think in most cases there will be a 2nd bone marrow biopsy at the conclusion of treatment to determine how complete the remission is. It is possible to go into remission without a stem cell transplant, in fact for the most common type of transplant - autologous, where they use your own stem cells so there is very low risk involved - you normally need to be in at least a Very Good Partial remission before they will collect your stem cells (which is a very simple procedure, like being a pheresis blood donor). It seems there is some discussion among doctors and researchers whether the added time until relapse that SCT seems to provide is valid but I believe that when the patient is in good enough condition, it remains the international standard of treatment, in combination with chemo. I should mention that the "transplant" is pretty anti-climactic, it's simply administered intravenously in about an hour while you're in the hospital, like getting a pouch of blood. The high-dose chemo that precedes it can be a bit rough, mainly nausea/vomiting and mouth sores but by chewing ice chips for half an hour before and all during the infusion, and continuing for 15 minutes after, these sores can often be avoided. It worked for me. The nausea can be mostly controlled with meds, though I did have a couple days of vomiting but otherwise felt okay. I never experienced the severe fatigue that some patients have for a week to a couple of months following this chemo, guess I was lucky.

I was diagnosed a year ago, initial bone marrow biopsy showed 60% of marrow affected. Have just finished a long course of treatment in a clinical trial: 4 months chemo consisting of carfilzomib/thalidomide/dexamethasone, stem cell collection preceded by high-dose cyclophosphamide, a month later stem cell transplant preceded by 2 days of high-dose melphalan, and finally 4 more months of car/tha/dex. I will have my 2nd bone marrow biopsy next month to assess how deep my remission is. Then I'll have one annually. I don't know if this is the normal procedure or if I'll have them more frequently than one normally would because I'm in a trial and they need to gather information.

All through my treatment, I had blood drawn every week, and tested for m-proteins which is in most cases a very good indicator of myeloma activity; mine had already dropped significantly after the first cycle of chemo and even before stem cell transplant I was in a Near Complete Response. Another tool used to measure your response to treatment is the 24-hour urine catch, this is an accurate measurement of the existence of free light chains whose presence indicate myeloma activity. I had this test done the week before treatment began and after the 2nd cycle of chemo. Although I had a high reading at the outset, there were no free light chains detected after the 2nd cycle so I didn't have that test again until the start of my final cycle of consolidation chemo (which followed transplant); happily that value remains "undetectable".

Hi Rodney, I'm still trying to learn how to reply. I think I may have accidentally sent you a partial reply. I wanted you to know my Kappa light chain is high but my Lambda light chain is low. The Free K/L ratio is also elevated. I have a lot of bone involvement. No protein in the urine, albumin and calcium blood levels are good. No problems with the kidneys so far. Thank you for taking the time to read all of the different reply's. I see the Doctor next Tuesday. I am interested to find out what type of Myeloma I have. I have 40% of Myeloma plasma cells in my bone marrow. Thank you Juli

rodney said:

Hi Juli , We all are different and each medical facility has their own way of doing things. For me they did the extensive blood work monthly in the beginning. Now that I have had a transplant and am on maintenance therapy they do it every 6 weeks. They had done a total blood counts weekly as long as I was on Velcade, Revlimid and Dexamethasone. The Velcade is hard on you blood count, so things must be watched very closely while you receive it. When they do the extensive test they look at many things, the ones I know about are the M protein, the Igg and the light chains all of these are marker items that are relative to multiple myeloma. The m protein is a part of MM and can be detected in the blood, normal is zero, most times the Igg runs high in MM patients as part of it is related to MM, the light chains are complex so I let my doctor handle their iterpretation . I do know that I am on revlimid and a small dose of dex because of the light chains.

My doctor explained to me that treatment of MM is in trends, not an instant .Yes can get into remission without a transplant, however I feel they will want to do a transplant either way as it is the most significant way to achieve a long term response. However it is never cured.

I just took the time to read the other responses, They are all super good advice from experienced people, as you can see each one of us has had different treatments and experiences. I do not know the extent of my marrow's involvement,I watched the m protein. I do not have any bone damage, or very little. My kidneys have not been involved and function normally. I was close to remission 45 days before the transplant however it made a significant jump right at the time of transplant, so the dr. considers mine to be very aggressive. During the 12 months following the transplant while I received maintenance therapy it responded much better than they expected and I have achieved what they consider to be remission, however he wants it to be stringent remission, so the light chains got to go, even though they can not quantify them as they are so small a level. I knew the doctor that diagnosed what I had, as he was my dr for 16 years of follow up visits from hodgekins . He has since retired, however his advice still runs true today, have strong faith that all is well with the world, don't worry my friend. You will be Ok..

Rodney

Thank you to everyone who commented on my Discussion topic. It is nice to be able to talk to so many people who know and understand Myeloma so well. Thank you again Juli