Hello,
I am hoping someone can steer me in the most effective direction regarding mobilization treatment.
I will be having a stem cell transplant in the middle of August 2015 at Stanford. My mobilization will start the end of July.
I have been given the option to either be administered Cytoxan (cyclophosphamide) chemotherapy (high dose) and the growth factor Neupogen, or Neupogen alone for 5-6 days. Of course, I don't look forward to the high-dose chemotherapy and all it's side effects, but is it more effective with the success of the transplant overall?
My last treatment of Kyprolis, Revlimid, and dexamethasone (KRD) is scheduled to end June 28th. My oncologist said today he could continue my current treatment through July as they can administer Mozobil to increase my cell count and I wouldn't need the high-dose chemo before mobilization.
Any insight or experiences would greatly be appreciated.
Thank you and have a great evening.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Which stem cell mobilization regimen should I choose?
Hi Rhonda,
You're asking a good question, but I'm a little confused. At the beginning of your posting, you say that you've been given a choice between Cytoxan and Neupogen, or Neupogen alone.
But, later, you suggest that your doctor doesn't really think you should go with the Cytoxan and Neupogen option, because "they can administer Mozobil to increase my cell count and I wouldn't need the high-dose chemo before mobilization."
So is your doctor basically recommending the option with Neupogen by itself, and he would give you Mozobil if the Neupogen by itself isn't enough?
I guess my other question is what sort of response you've had to the KRD treatment so far.
Sorry for all the questions ...
You're asking a good question, but I'm a little confused. At the beginning of your posting, you say that you've been given a choice between Cytoxan and Neupogen, or Neupogen alone.
But, later, you suggest that your doctor doesn't really think you should go with the Cytoxan and Neupogen option, because "they can administer Mozobil to increase my cell count and I wouldn't need the high-dose chemo before mobilization."
So is your doctor basically recommending the option with Neupogen by itself, and he would give you Mozobil if the Neupogen by itself isn't enough?
I guess my other question is what sort of response you've had to the KRD treatment so far.
Sorry for all the questions ...
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Jonah
Re: Which stem cell mobilization regimen should I choose?
Hi Jonah,
Sorry for the confusion. I am actually referring to two different doctors (I live 250 miles from Stanford), and I currently don't have a multiple myeloma specialist for my induction treatment.
My oncologist at home, who I saw today, said he would suggest to Stanford continuing my treatment of KRD through July. He said then I should be okay to have Neupogen only administered by Stanford. So, yes, I believe he is recommending this route. The reason for the Mozobil is because Revlimid can cause low cell production.
My concern is I want to chose the best option for the most successful transplant. Based on my last appointment at Stanford, they are only aware of my KRD treatment being given through June 28th, as my mobilization process was going to start the beginning of July. Stanford is giving me the two different options.
It is a little difficult to answer you on my response to the KRD. I had a bone marrow biopsy on April 24 which showed persistent myeloma, lambda monoclonal, 10-20% plasma cells. These numbers dropped from 30-40% plasma cells from my last biopsy performed in October 2014 . and that FISH positivity persists.
My labs are not current, I have an order for a complete multiple myeloma panel to be ran this week. I started KRD in January 15 and, based on labs ran in February, I had a very good response, which showed my M-spike dropped from 2.5 g/dl to 1.99 g/dl, kappa FLC 0.2, lambda 8.82, K/L 0.02.
My Stanford doctor said she believes to date I am having an improved response, but not quite a PR, from the February studies. She said it is possible that I will have a deeper response to therapy by the time of transplant. I am hoping this week's tests will show a better response.
Should I wait until after I receive my labs back from this week to make a decision?
I hope this answers your question.
Thanks for your response.
Rhonda
Sorry for the confusion. I am actually referring to two different doctors (I live 250 miles from Stanford), and I currently don't have a multiple myeloma specialist for my induction treatment.
My oncologist at home, who I saw today, said he would suggest to Stanford continuing my treatment of KRD through July. He said then I should be okay to have Neupogen only administered by Stanford. So, yes, I believe he is recommending this route. The reason for the Mozobil is because Revlimid can cause low cell production.
My concern is I want to chose the best option for the most successful transplant. Based on my last appointment at Stanford, they are only aware of my KRD treatment being given through June 28th, as my mobilization process was going to start the beginning of July. Stanford is giving me the two different options.
It is a little difficult to answer you on my response to the KRD. I had a bone marrow biopsy on April 24 which showed persistent myeloma, lambda monoclonal, 10-20% plasma cells. These numbers dropped from 30-40% plasma cells from my last biopsy performed in October 2014 . and that FISH positivity persists.
My labs are not current, I have an order for a complete multiple myeloma panel to be ran this week. I started KRD in January 15 and, based on labs ran in February, I had a very good response, which showed my M-spike dropped from 2.5 g/dl to 1.99 g/dl, kappa FLC 0.2, lambda 8.82, K/L 0.02.
My Stanford doctor said she believes to date I am having an improved response, but not quite a PR, from the February studies. She said it is possible that I will have a deeper response to therapy by the time of transplant. I am hoping this week's tests will show a better response.
Should I wait until after I receive my labs back from this week to make a decision?
I hope this answers your question.
Thanks for your response.
Rhonda
Last edited by Rhonda on Wed May 27, 2015 7:55 am, edited 1 time in total.
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Which stem cell mobilization regimen should I choose?
Hello Rhonda:
Here is my recollection of a discussion with a very experienced transplant doctor. If your initial induction is not successful in getting you to less than 10% myeloma involvement in the bone marrow, then additional conditioning with Cytoxan is generally used. For a number of reasons, it is better to go into the ASCT with a lower tumor burden, and the Cytoxan often times can get that result.
If your initial induction got you to below 10%, then you are in a relatively good position already, and the Cytoxan does not benefit as much (it very probably would not be successful in getting all the way down to zero).
Secondarily, if you did not need the Cytoxan, it stays in your "back pocket", and will likely be somewhat more effective in some type of drug combination in the future (say when a relapse occurs, hopefully many years down the line), as repeat uses of any drug generally results in the myeloma becoming somewhat more resistant to the drug.
Hopes this helps. JPC
Here is my recollection of a discussion with a very experienced transplant doctor. If your initial induction is not successful in getting you to less than 10% myeloma involvement in the bone marrow, then additional conditioning with Cytoxan is generally used. For a number of reasons, it is better to go into the ASCT with a lower tumor burden, and the Cytoxan often times can get that result.
If your initial induction got you to below 10%, then you are in a relatively good position already, and the Cytoxan does not benefit as much (it very probably would not be successful in getting all the way down to zero).
Secondarily, if you did not need the Cytoxan, it stays in your "back pocket", and will likely be somewhat more effective in some type of drug combination in the future (say when a relapse occurs, hopefully many years down the line), as repeat uses of any drug generally results in the myeloma becoming somewhat more resistant to the drug.
Hopes this helps. JPC
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JPC - Name: JPC
Re: Which stem cell mobilization regimen should I choose?
Hi JPC
That certainly gives me something to think about, since I am at 10-20%, so I am close. I will have received 2 more additional cycles of KRD when I have my mobilization, so potentially I could reach that.
I actually started with CyBorD (cyclophosphamide, Velcade, and dex) for 3 months, which only stabilized my numbers. So I have been on a lower dose of Cytoxan. So hopefully that wasn't the drug that wasn't effective.
Thank you for your response.
Enjoy your day.
Rhonda
That certainly gives me something to think about, since I am at 10-20%, so I am close. I will have received 2 more additional cycles of KRD when I have my mobilization, so potentially I could reach that.
I actually started with CyBorD (cyclophosphamide, Velcade, and dex) for 3 months, which only stabilized my numbers. So I have been on a lower dose of Cytoxan. So hopefully that wasn't the drug that wasn't effective.
Thank you for your response.
Enjoy your day.
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Which stem cell mobilization regimen should I choose?
As with all things related to this disease, your question is difficult to answer because we all respond differently to the various protocols. When I did the mobilization for the stem cell harvesting, I had the Cytoxan infusion followed by 10 days of Neupogen injections. I had one day of harvesting with enough cells for 2 transplants. I had been on Revlimid 15 mg and dex 40 mg for 7 months prior to my transplant. I was on induction that long by my request because of the optimum time in my schedule to take time off from work for the transplant.
I don't know what my bone marrow levels were at the time because a repeat biopsy wasn't done. At diagnosis it was 70%. My m-spike going into the transplant was 0.6 mg/dl.
I'm surprised that your oncologist hasn't done regular blood tests since you started treatment. Nothing since February is an awfully long time. During induction, mine was tested once a month, and now is still tested every 6 weeks.
Good luck with whatever you decide to prepare for harvesting and then your transplant. Hopefully, all of the tests that will be run soon show that you have responded well to your treatment.
Nancy in Phila
I don't know what my bone marrow levels were at the time because a repeat biopsy wasn't done. At diagnosis it was 70%. My m-spike going into the transplant was 0.6 mg/dl.
I'm surprised that your oncologist hasn't done regular blood tests since you started treatment. Nothing since February is an awfully long time. During induction, mine was tested once a month, and now is still tested every 6 weeks.
Good luck with whatever you decide to prepare for harvesting and then your transplant. Hopefully, all of the tests that will be run soon show that you have responded well to your treatment.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Which stem cell mobilization regimen should I choose?
Hi Nancy,
Thank you for pointing out the labs. Yes, I have had labs done after each cycle of treatment. For some reason, Stanford did not receive my most recent labs. I will request the lab include Stanford with a copy this time.
You are right there isn't anything simple about multiple myeloma. But I do know one thing: there are a lot of helpful people on this site.
Thanks again,
Rhonda
Thank you for pointing out the labs. Yes, I have had labs done after each cycle of treatment. For some reason, Stanford did not receive my most recent labs. I will request the lab include Stanford with a copy this time.
You are right there isn't anything simple about multiple myeloma. But I do know one thing: there are a lot of helpful people on this site.
Thanks again,
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Which stem cell mobilization regimen should I choose?
Rhonda,
I certainly believe in involving the patient in treatment decisions. But, if I am understanding this correctly, I am surprised you are being given a choice in this, I would just expect my doctor to make the best decision based on my particular case for getting enough stem cells for the transplant. How would I possibly know what that is?
Since it is Stanford doing the transplant, and they do a lot of them and have myeloma specialist, I would go with what they feel is best.
I certainly believe in involving the patient in treatment decisions. But, if I am understanding this correctly, I am surprised you are being given a choice in this, I would just expect my doctor to make the best decision based on my particular case for getting enough stem cells for the transplant. How would I possibly know what that is?
Since it is Stanford doing the transplant, and they do a lot of them and have myeloma specialist, I would go with what they feel is best.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Which stem cell mobilization regimen should I choose?
Understanding we are all very unique, I am sharing my harvesting experience, perhaps for someone's benefit. I am 67, after smoldering for 5 years and upon becoming symptomatic, I did induction for 3 CyBorD cycles and had near complete remission, then proceeded to harvesting.
Just completed harvesting yesterday, and am planning to delay ASCT (months, a year or longer, if feasible). The process, start to finish, took 6 days, all at the BMT center.
Day 1:
Two Neupogen shots.
Day 2:
Two Neupogen shots and placement of central line by an intervention radiologist.
Day 3:
Two Neupogen shots.
Day 4:
Two Neupogen shots in the morning. Waited to see if Mozobil shots were needed depending upon CD34 levels. They were expecting CD34 levels to be around 20. A few hours later, they came out to be 28, so the doctor decided not to give Mozobil. So, I did not have to return later to get additional shot.
Day 5:
Two Neupogen shots. The CD34 level was checked again. It had jumped to 56. Stem cell collection was started. It lasted about 5 hours. Again, Mozobil was being considered if needed. Since they collected 4.9 million stem cells, no Mozobil was given.
Day 6:
Two Neupogen shots before second day of collection. After 4.5 hours, another 2.1 M (total of 7M) were collected. The central line was painfully removed and I was so glad it was successfully over.
I had a lot of bone pain and body ache. As they say, all is well that ends well. I am relieved this phase of my multiple myeloma journey is over.
Just completed harvesting yesterday, and am planning to delay ASCT (months, a year or longer, if feasible). The process, start to finish, took 6 days, all at the BMT center.
Day 1:
Two Neupogen shots.
Day 2:
Two Neupogen shots and placement of central line by an intervention radiologist.
Day 3:
Two Neupogen shots.
Day 4:
Two Neupogen shots in the morning. Waited to see if Mozobil shots were needed depending upon CD34 levels. They were expecting CD34 levels to be around 20. A few hours later, they came out to be 28, so the doctor decided not to give Mozobil. So, I did not have to return later to get additional shot.
Day 5:
Two Neupogen shots. The CD34 level was checked again. It had jumped to 56. Stem cell collection was started. It lasted about 5 hours. Again, Mozobil was being considered if needed. Since they collected 4.9 million stem cells, no Mozobil was given.
Day 6:
Two Neupogen shots before second day of collection. After 4.5 hours, another 2.1 M (total of 7M) were collected. The central line was painfully removed and I was so glad it was successfully over.
I had a lot of bone pain and body ache. As they say, all is well that ends well. I am relieved this phase of my multiple myeloma journey is over.
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DexMed - Name: GV
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2010 Smoldering. Symptomatic 9/2014
- Age at diagnosis: 62
Re: Which stem cell mobilization regimen should I choose?
Eric - I actually did just that yesterday. I e-mailed my nurse coordinator and provided her with the info I have learned from this thread and asked that the doctor make the decision. I do trust in their judgment, and I know I am in good hands, but for some reason I was given a choice and I want to be in remission for as long as possible after the stem cell transplant.
DexMed - Thank you for sharing your experience. It sounded pretty uneventful other than the pain. I am glad it was a success.
I hope you both have a great day
Rhonda
DexMed - Thank you for sharing your experience. It sounded pretty uneventful other than the pain. I am glad it was a success.
I hope you both have a great day
Rhonda
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
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