Good afternoon,
I'm newly registered on the forum but have frequently read it over the past 5 years.
By way of a brief background, I was formally diagnosed in May of 2011, but had bad back pain for almost a year before. I started on Velcade, which caused severe peripheral neuropathy. In October of that year I had a stem cell transplant at Duke. I was pronounced in complete remission (CR) in May 2012 (although the peripheral neuropathy remained and does to this day).
After over a year or so of continued CR with no M-spike and light chains in balance, I began to see marginal increase in M spike and started on Revlimid. After several months, my M-spike went back to zero and I went off Revlimid.
Soon thereafter I discovered a visible tumor on my left rib and, having had some moderately severe side effects with the Revlimid, began therapy with Pomalyst. At this point, my onc says my M-spike marker is no longer a reliable marker and, since my light chains are still in balance, the only way to determine my status is with PET/CT scans every 3-4 months.
My latest scan showed a marginal uptake increase in the location of the prior left rib location, but there is little if any pain associated with that increase. Now he is recommending I go on a Darzalex (daratumumab) / dex regimen.
As most of you know, it is very difficult to compare the relative efficacy of the test results of these drugs due to the different measures of success during the trials. Here's my problem: if I go on Darzalex, I am essentially tethered to my home area and will have to commit 3-4 hours every other week given the infusion method of administering the drug. By staying on Pomalyst, I have he freedom of administering the oral drug in my home or anywhere else I choose (e.g., on a 2-3 week vacation). I have had minor side effects from the Pomalyst and have no experience with the potential side effects of Darzalex, although I am told that moderately severe body rashes are not uncommon.
My other option is do nothing. I am 74 and right now I feel pretty good considering the peripheral neuropathy and permanent right ear deafness caused by the Velcade. I've had a great life and am ready for it to end at any time God chooses, but I would like to live as long as the quality of my life is such that I am not a burden to anyone.
So my dilemma is between the implied improved efficacy of Darzalex with the incumbent constraints of administration and the Pomalyst with known efficacy and freedom of the oral regimen.
Any thoughts?
Forums
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Stay on Pomalyst or switch to Darzalex?
What were your side effects when you were on Revlimid? If they weren't too bad, I'd try a lower dose of Revlimid. They now have doses as low as 2.5 mg. I took the 2.5 mg and it kept my M-spike down with tolerable side effects.
I'm your age and I hear you loud and clear. I've been drug-free for a year, but my M-spike is trending up, so I'm probably going to start back on the low dose of Revlimid.
Coach Hoke
I'm your age and I hear you loud and clear. I've been drug-free for a year, but my M-spike is trending up, so I'm probably going to start back on the low dose of Revlimid.
Coach Hoke
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: Stay on Pomalyst or switch to Darzalex?
Hello Jackbo:
Here are my thoughts, as you asked. At first, although I thought you asked a very very interesting question, my initial thought was that I for sure did not know the answer to your question, but also the leading doctors would not know for sure which would work better, given the relative newness of both Pomalyst and daratumumab. I gave this a little thought, however, and I think your doctor is on to something.
Pomalyst, an imid, is a continuation of a treatment that shows early signs of becoming refractory, (you have also been exposed to Revlimid, another imid). Darzalex, however, has a chance to knock the multiple myeloma burden all the way down, again, and allow you to re-establish, possibly, a new maintenance regimen that might work due to the multiple myeloma burden being lower. If Darzalex does not work to best case, it might have a partial response (again its newer and your multiple myeloma is seeing it for the first time). Your chance of getting a depth and duration of response with Pomalyst (and this is only a wild guess from me), an imid which has been working against your multiple myeloma for several years, is probably much less.
If Darzalex does not get a response, you can go back to Pomalyst. If Pomalyst does not work, you can then go to elotuzumab and/or daratumumab. Logically, for both approaches, it's the same. However, although its impossible to predict for certain, since you have been a "responder" in the past, you may have a better chance of getting the robust response to the monoclonal antibody. Your multiple myeloma is naïve to it. Good luck.
Here are my thoughts, as you asked. At first, although I thought you asked a very very interesting question, my initial thought was that I for sure did not know the answer to your question, but also the leading doctors would not know for sure which would work better, given the relative newness of both Pomalyst and daratumumab. I gave this a little thought, however, and I think your doctor is on to something.
Pomalyst, an imid, is a continuation of a treatment that shows early signs of becoming refractory, (you have also been exposed to Revlimid, another imid). Darzalex, however, has a chance to knock the multiple myeloma burden all the way down, again, and allow you to re-establish, possibly, a new maintenance regimen that might work due to the multiple myeloma burden being lower. If Darzalex does not work to best case, it might have a partial response (again its newer and your multiple myeloma is seeing it for the first time). Your chance of getting a depth and duration of response with Pomalyst (and this is only a wild guess from me), an imid which has been working against your multiple myeloma for several years, is probably much less.
If Darzalex does not get a response, you can go back to Pomalyst. If Pomalyst does not work, you can then go to elotuzumab and/or daratumumab. Logically, for both approaches, it's the same. However, although its impossible to predict for certain, since you have been a "responder" in the past, you may have a better chance of getting the robust response to the monoclonal antibody. Your multiple myeloma is naïve to it. Good luck.
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JPC - Name: JPC
Re: Stay on Pomalyst or switch to Darzalex?
I thought I would provide a current status to my original query:
After due consideration, I decided to start the Darzalex / dex therapy. I will have a new baseline scan on February 10 and begin the first infusion the following day. I figured that the potential benefits of Darzalex outweighed the inconvenience of the infusion method of administering the drug. Actually, after the first two months or so, it's only a once per month event, which is quite acceptable.
I will provide some progress updates as appropriate. Best to all.
Jack
After due consideration, I decided to start the Darzalex / dex therapy. I will have a new baseline scan on February 10 and begin the first infusion the following day. I figured that the potential benefits of Darzalex outweighed the inconvenience of the infusion method of administering the drug. Actually, after the first two months or so, it's only a once per month event, which is quite acceptable.
I will provide some progress updates as appropriate. Best to all.
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Stay on Pomalyst or switch to Darzalex?
Just a quick update. I had my first infusion yesterday at the Levine Cancer Institute in Charlotte. Although it took almost 12 hours, including a 2-hour delay due to a predicted reaction in my throat (itching, tightening sensation). Fortunately, I realized it early enough for it to brought under control with Benadryl and antihistamines. The rest of the infusion was uneventful and the staff predicts smooth sailing (albeit lengthy) process from here on.
I will essentially be dedicating one day per week to the Infusion. Even with the reduced volume, there are prep hours and an hour afterward to ensure no side effects. I am encouraged though since after the first four months it will be one day per month. The Levine staff were part of the FDA trials so I wasn't a Guinea pig. They were well experienced with the drug and made me feel very comfortable and confident.
I will be happy to answer any questions.
Jack
I will essentially be dedicating one day per week to the Infusion. Even with the reduced volume, there are prep hours and an hour afterward to ensure no side effects. I am encouraged though since after the first four months it will be one day per month. The Levine staff were part of the FDA trials so I wasn't a Guinea pig. They were well experienced with the drug and made me feel very comfortable and confident.
I will be happy to answer any questions.
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Stay on Pomalyst or switch to Darzalex?
Thanks for the side effect descriptions on both Velcade and Darzalex; I think you are the second Tar Heeler on the forum to be treated with Darzalex. I'm anxious to see when and at what level of refractory disease Darzalex will be approved for use in Ontario.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Stay on Pomalyst or switch to Darzalex?
Hi, LM,
If I think about it next week, I will ask the head of the multiple myeloma department, Dr. Usmani, who was one of the lead doctors in the initial trials, what he might know about acceptance in Canada. I'll get back to you with any useful info.
Meanwhile, if you can point me to others here in the forum who have been on Darzalex, I would appreciate it. It might be fun to trade notes on our experiences. Thanks for the reply.
Best regards,
Jack
If I think about it next week, I will ask the head of the multiple myeloma department, Dr. Usmani, who was one of the lead doctors in the initial trials, what he might know about acceptance in Canada. I'll get back to you with any useful info.
Meanwhile, if you can point me to others here in the forum who have been on Darzalex, I would appreciate it. It might be fun to trade notes on our experiences. Thanks for the reply.
Best regards,
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Stay on Pomalyst or switch to Darzalex?
Hi Jack,
Mike Baron recently posted in the forum about his (very positive) experience with Darzalex. He's also in North Carolina. Here's a link to his postings:
"Daratumumab is working for me" (started Nov 14, 2015)
There are starting to be more postings about Darzalex in the posting. This link lists all of the forum discussions related to the drug, regardless of what the specific topic might be.
Good luck!
Mike Baron recently posted in the forum about his (very positive) experience with Darzalex. He's also in North Carolina. Here's a link to his postings:
"Daratumumab is working for me" (started Nov 14, 2015)
There are starting to be more postings about Darzalex in the posting. This link lists all of the forum discussions related to the drug, regardless of what the specific topic might be.
Good luck!
-
Jonah
Re: Stay on Pomalyst or switch to Darzalex?
Hello,
I know it's been 4 months since this thread has been active, but I wanted to see if the original poster (Jackbo1) would be interested in providing an update, especially as I think he'd be down to once a month by now.
My husband (who is following a very similar path - he has tumors, but no M-spike and normal light chains) will be starting Darzalex next week. I was wondering how the tumors responded to the new chemo? How were the side effects after the first week?
Any insight you could provide would be much appreciated!
Thank you.
I know it's been 4 months since this thread has been active, but I wanted to see if the original poster (Jackbo1) would be interested in providing an update, especially as I think he'd be down to once a month by now.
My husband (who is following a very similar path - he has tumors, but no M-spike and normal light chains) will be starting Darzalex next week. I was wondering how the tumors responded to the new chemo? How were the side effects after the first week?
Any insight you could provide would be much appreciated!
Thank you.
Re: Stay on Pomalyst or switch to Darzalex?
Hi Ladyaero.
You are correct that I am now about to finish my bi-weekly schedule (next Thursday) and start monthly in March.
The most important thing to report is that my scan at the end of June showed no new activity and much more rapid healing of older lesions than I was experiencing with Pomalyst last year.
After the first infusion I have had no infusion side effects. However, I have been hospitalized twice for pneumonia (for 2 and 4 nights) and just recently overnight for acute hypotension. Some, maybe most, of these effects may be self inflicted, as I tend to overdo normal physical activity in this blasted North Carolina heat. My caution for your husband would be to become the laziest guy on the block to avoid extra stress on his system.
I do believe the treatments have exacerbated my neuropathy even though that is not an expected side effect. Finally, I am subject to bruising. Here again, perhaps self inflicted, from tree and shrub trimming and other activities that cause minor cuts and bruises.
The 5-hour infusions are definitely a pain and my onc says I will probably need to stay on the monthly maintenance for the remainder of my time here. He does believe that approval of subcutaneous administration of the drug is imminent, which while not as convenient as a pill, would be a real improvement..
Hope that helps a bit. Don't hesitate to ask more specific questions as you think of them. Good luck to you and your man!
Jack
You are correct that I am now about to finish my bi-weekly schedule (next Thursday) and start monthly in March.
The most important thing to report is that my scan at the end of June showed no new activity and much more rapid healing of older lesions than I was experiencing with Pomalyst last year.
After the first infusion I have had no infusion side effects. However, I have been hospitalized twice for pneumonia (for 2 and 4 nights) and just recently overnight for acute hypotension. Some, maybe most, of these effects may be self inflicted, as I tend to overdo normal physical activity in this blasted North Carolina heat. My caution for your husband would be to become the laziest guy on the block to avoid extra stress on his system.
I do believe the treatments have exacerbated my neuropathy even though that is not an expected side effect. Finally, I am subject to bruising. Here again, perhaps self inflicted, from tree and shrub trimming and other activities that cause minor cuts and bruises.
The 5-hour infusions are definitely a pain and my onc says I will probably need to stay on the monthly maintenance for the remainder of my time here. He does believe that approval of subcutaneous administration of the drug is imminent, which while not as convenient as a pill, would be a real improvement..
Hope that helps a bit. Don't hesitate to ask more specific questions as you think of them. Good luck to you and your man!
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
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