Hello everyone,
My mother was diagnosed with myeloma (IgG kappa) in December of 2014. Her induction therapy is Velcade, dex, and Revlimid. She has responded remarkably to treatment. She has tolerated this very well with the exception of some neuropathy, which caused some mobility issues ... which has improved with physical therapy.
My mom finished her 4th cycle of Revlimid on April 6th. We have received a schedule from the stem cell transplant team as follows:
May 18th - 24-hour urine test
May 19th - Myocardial perfusion test and pulmonary function test
May 20th - Blood work, bone marrow biopsy, transplant class
June 8th - Start of Neupogen injections
My question is, how soon after Revlimid therapy do you get the stem cell transplant?
My mom is not set to be done with the Velcade injections until August. Will they wait all the way to August to do the transplant, or will the Velcade injections be halted depending on how the bone marrow biopsy comes back?
What numbers should I expect to see as good results on the biopsy.
Thanks for any responses!
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Re: Timing of stem cell transplant
I'm just a little ahead of you in the process but will answer what I believe to be the protocol.
The Neupogen shots scheduled for June are likely in preparation for stem cell harvest. Depending on your mom's blood and biopsy results, and perhaps other factors, the team will recommend which protocol to use to prep for the harvest, i.e., Cytoxan (cyclophosphamide) vs, no chemo. The Velcade shots will be on hold for at least a few weeks prior to collection.
If your mom decides to go forward with a stem cell transplant now rather than wait, she will likely stay off Velcade at least until 100 days post transplant. My husband is 24 days post transplant and plans to go back to 2-3 cycles of RVD (Revlimid, Velcade, dex) treatment as consolidation prior to moving to Revlimid maintenance. It is possible that your mom's Velcade shots and the Revlimid and dex may start up again after the transplant with the goal of attaining the deepest response possible. Different myeloma specialists have different views on this, but our specialist recommends it for my husband based on his age, aggressive disease, and ability to tolerate treatment.
Best of luck.
The Neupogen shots scheduled for June are likely in preparation for stem cell harvest. Depending on your mom's blood and biopsy results, and perhaps other factors, the team will recommend which protocol to use to prep for the harvest, i.e., Cytoxan (cyclophosphamide) vs, no chemo. The Velcade shots will be on hold for at least a few weeks prior to collection.
If your mom decides to go forward with a stem cell transplant now rather than wait, she will likely stay off Velcade at least until 100 days post transplant. My husband is 24 days post transplant and plans to go back to 2-3 cycles of RVD (Revlimid, Velcade, dex) treatment as consolidation prior to moving to Revlimid maintenance. It is possible that your mom's Velcade shots and the Revlimid and dex may start up again after the transplant with the goal of attaining the deepest response possible. Different myeloma specialists have different views on this, but our specialist recommends it for my husband based on his age, aggressive disease, and ability to tolerate treatment.
Best of luck.
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EF11 - Who do you know with myeloma?: husband
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 43
Re: Timing of stem cell transplant
EF11
Thank you for your reply.
I remember when I didn't know what multiple myeloma was (never even heard of it until my mom's diagnosis). Now we are moving pretty fast towards getting the ball rolling for the stem cell transplant.
I am praying that the bone marrow biopsy and rest the of her test results come back good enough to move forward. I am just in a nervous wreck trying to figure out this whole stem cell process.
So how soon after the Neupogen injections will the transplant be? Is there a certain timeframe?
Thank you for your reply.
I remember when I didn't know what multiple myeloma was (never even heard of it until my mom's diagnosis). Now we are moving pretty fast towards getting the ball rolling for the stem cell transplant.
I am praying that the bone marrow biopsy and rest the of her test results come back good enough to move forward. I am just in a nervous wreck trying to figure out this whole stem cell process.
So how soon after the Neupogen injections will the transplant be? Is there a certain timeframe?
Re: Timing of stem cell transplant
Jaren-
Again, the response to your question depends on how the transplant center your mother is going to functions.
Your mother is likely to have several days of Neupogen injections that may have been preceded with an infusion of Cytoxan. After the number of Neupogen injections that are recommended, your mother will have her stem cells harvested via apheresis. This process could take as little as one day to as many as several days to harvest enough of her stem cells for the transplant. She may be scheduled for the transplant to take place about 1 week after the end of the harvesting process. At that time, she may be admitted to the hospital for the transplant. She will receive an infusion of melphalan to kill the bone marrow in her body. One to two days later, she will have her stem cells reinfused into her body to rescue her from the effects of the melphalan. After that, she will be recovering from the process and waiting for the stem cells to return to the bone marrow space and begin to produce blood cells again.
From the schedule that you posted, it looks like all of these questions will be answered by the transplant center in the transplant education class. Each center has a very specific protocol that they follow. Make sure that you attend the class and bring all of the questions that you have to it. There are lots of little things that you will want to know that will be answered in the class.
It's a lot to learn in a very short period of time, but look at all that you've learned so far. This is another time to take a big breath and try not to get overwhelmed with what is going on. Be sure to ask your mother's oncologist anything that you want to know each time that she sees him / her.
All the best to your mother as she prepares for a transplant,
Nancy in Phila
Again, the response to your question depends on how the transplant center your mother is going to functions.
Your mother is likely to have several days of Neupogen injections that may have been preceded with an infusion of Cytoxan. After the number of Neupogen injections that are recommended, your mother will have her stem cells harvested via apheresis. This process could take as little as one day to as many as several days to harvest enough of her stem cells for the transplant. She may be scheduled for the transplant to take place about 1 week after the end of the harvesting process. At that time, she may be admitted to the hospital for the transplant. She will receive an infusion of melphalan to kill the bone marrow in her body. One to two days later, she will have her stem cells reinfused into her body to rescue her from the effects of the melphalan. After that, she will be recovering from the process and waiting for the stem cells to return to the bone marrow space and begin to produce blood cells again.
From the schedule that you posted, it looks like all of these questions will be answered by the transplant center in the transplant education class. Each center has a very specific protocol that they follow. Make sure that you attend the class and bring all of the questions that you have to it. There are lots of little things that you will want to know that will be answered in the class.
It's a lot to learn in a very short period of time, but look at all that you've learned so far. This is another time to take a big breath and try not to get overwhelmed with what is going on. Be sure to ask your mother's oncologist anything that you want to know each time that she sees him / her.
All the best to your mother as she prepares for a transplant,
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: Timing of stem cell transplant
NStewart,
Thank you for your response.
Right now, it seems like we are moving along pretty fast. I am being very diligent in being sure that everything is properly coordinated for my mom's stem cell transplant. She is very nervous about getting this done. Her physician seems to believe that this is the best thing for her. We didn't ultimately make the decision ourselves initially. It was already a part of his treatment plan for her. The physician says that now is the time to do it for several reasons:
1) Aggressive myeloma
2) No kidney Involvement
3) Generally healthy otherwise myeloma
So that pretty much convinced us to go ahead with what he recommended.
Are the Neupogen injections given daily? Will she be able to do those injections herself if needed?
Thank you for your response.
Right now, it seems like we are moving along pretty fast. I am being very diligent in being sure that everything is properly coordinated for my mom's stem cell transplant. She is very nervous about getting this done. Her physician seems to believe that this is the best thing for her. We didn't ultimately make the decision ourselves initially. It was already a part of his treatment plan for her. The physician says that now is the time to do it for several reasons:
1) Aggressive myeloma
2) No kidney Involvement
3) Generally healthy otherwise myeloma
So that pretty much convinced us to go ahead with what he recommended.
Are the Neupogen injections given daily? Will she be able to do those injections herself if needed?
Re: Timing of stem cell transplant
Jaren,
I just had my stem cell harvest a few weeks ago. I decided, due to several obligations, to harvest first and then do the transplant later. I can give you my experience with the harvest portion as far as treatments leading up to the harvest.
I had an inital treatment of Revlimid / dex and was having a very good response until I had a serious rash from the Revlimid. So then it changed to Velcade / dex, which gave me a complete response. My bone marrow biopsy 3 weeks before harvest showed 2%. My local oncologist spoke with the multiple myeloma team (who is 200 miles from home), and they said that it was time to harvest.
The Velcade was stopped as was the dexamethasone 3 weeks prior to harvest. I also have neuropathy and I was told that I could continue to take my Lyrica prescription. I had a lot of blood work that was ordered by the myeloma team. Then there was an EKG, bone survey, bone marrow biopsy, PFT, whole-body scan, Muga scan and a visit with the hospital social worker. I had to supply them with a notarized copy of my Advanced Health Care Directive.
My pre-harvest started with a dose of Cytoxan [cyclophosphamide], which lasted about 4 hours total at my local oncologist. Then the next 10 days was 2 injections per day (plus one more at the hospital when I arrived for collection). I wanted to do the injections at home but my oncologist could not allow me to take them. I believe it had something to do with my insurance. So my oncologist came in on the weekends to give me the injections.
I decided to have the central line placed and my first day of collection done the same day. That was one long day for me and my wife. If I did it over, I would have the line placed one day and start collecting the following day.
The stem cell harvest is really interesting, and I asked the nurse a lot of questions. I was never left alone in the room during the 5 hours that I was there each day. I needed two days to collect a little more than 5 million cells. Take an Ipad or reading material when you are there to pass the time. I actually slept a lot.
I hope this helps a little.
Castaway
I just had my stem cell harvest a few weeks ago. I decided, due to several obligations, to harvest first and then do the transplant later. I can give you my experience with the harvest portion as far as treatments leading up to the harvest.
I had an inital treatment of Revlimid / dex and was having a very good response until I had a serious rash from the Revlimid. So then it changed to Velcade / dex, which gave me a complete response. My bone marrow biopsy 3 weeks before harvest showed 2%. My local oncologist spoke with the multiple myeloma team (who is 200 miles from home), and they said that it was time to harvest.
The Velcade was stopped as was the dexamethasone 3 weeks prior to harvest. I also have neuropathy and I was told that I could continue to take my Lyrica prescription. I had a lot of blood work that was ordered by the myeloma team. Then there was an EKG, bone survey, bone marrow biopsy, PFT, whole-body scan, Muga scan and a visit with the hospital social worker. I had to supply them with a notarized copy of my Advanced Health Care Directive.
My pre-harvest started with a dose of Cytoxan [cyclophosphamide], which lasted about 4 hours total at my local oncologist. Then the next 10 days was 2 injections per day (plus one more at the hospital when I arrived for collection). I wanted to do the injections at home but my oncologist could not allow me to take them. I believe it had something to do with my insurance. So my oncologist came in on the weekends to give me the injections.
I decided to have the central line placed and my first day of collection done the same day. That was one long day for me and my wife. If I did it over, I would have the line placed one day and start collecting the following day.
The stem cell harvest is really interesting, and I asked the nurse a lot of questions. I was never left alone in the room during the 5 hours that I was there each day. I needed two days to collect a little more than 5 million cells. Take an Ipad or reading material when you are there to pass the time. I actually slept a lot.
I hope this helps a little.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Timing of stem cell transplant
Castaway,
Thank you for more insight. I spoke with the nurse coordinator at the cell and gene therapy center. Ultimately I think everything will depend on the results of my mother's bone marrow biopsy. When she was initially diagnosed, she had 50% myeloma cells. Hopefully that number will be much lower once we get the results.
She has the bone marrow biopsy done on May 20th, which is her birthday! I told her to look at it as a gift! The numbers you get will be a special gift for you.
If all stays on schedule, she will start the Neupogen injections Friday June 5th, she will get injections until the 8th; on the 8th they will check to see if there is enough to extract.
Thanks to you all for making this much easier for me to understand. I wish you all much luck and success in your treatments as well.
I will keep you all posted!
Thank you for more insight. I spoke with the nurse coordinator at the cell and gene therapy center. Ultimately I think everything will depend on the results of my mother's bone marrow biopsy. When she was initially diagnosed, she had 50% myeloma cells. Hopefully that number will be much lower once we get the results.
She has the bone marrow biopsy done on May 20th, which is her birthday! I told her to look at it as a gift! The numbers you get will be a special gift for you.
If all stays on schedule, she will start the Neupogen injections Friday June 5th, she will get injections until the 8th; on the 8th they will check to see if there is enough to extract.
Thanks to you all for making this much easier for me to understand. I wish you all much luck and success in your treatments as well.
I will keep you all posted!
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