I started clinical trial of pomalidomide [Pomalyst], clarithromycin and dexamethasone on Feb. 1.
At the 2 week point I developed a lump in my neck near my parotid gland. It came on in a matter of seconds. At the end of week three I was neutropenic. I gave myself 3 shots of Neupogen on 3 consecutive days. Just this past week, my off week, two more lumps developed; one by my collar bone and one by my right eyebrow.
Naturally, I'm concerned that the trial is not working. Has anyone had similar issues? Perhaps I'm only having a partial response or perhaps I need to give the trial more time. Or perhaps I should jump ship and try something else?
I'm being treated at Sloan and was on Revlimid maintenance following an autologous transplant in June 2012.
Feedback appreciated.
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Re: Plasmacytomas appearing while on Pomalyst
Hi 1 World,
I'm not on Pomalyst, but I've had plasmacytomas develop while on treatment. I had some on my forehead at diagnosis. They went away after 2 cycles of RVD. Then, at the end of 6 cycles of RVD and prior to transplant ,I had one develop on the side of my head and some on my forehead again. They flattened after Cytoxan and melphalan at the harvest and transplant.
Eight weeks post transplant they developed again. My doctors are not convinced that is definitely what they are, but they went away after one cycle of RVD, so I believe they are plasmacytomas. Now I've had 2 cycles of RVD for consolidation and am finishing a reduced RVD dosage for maintenance and they are back a little bit.
To me, they are disturbing and I can't keep from touching them. To the doctors, they are surprising, but just part of a whole picture that we need to keep an eye on. I asked for full skeletal surveys to make sure that bone destruction isn't going on everywhere, and the report said that my bones are about the same. It's a mystery. My doctors are focused more on my blood labs, which show a low M-spike (lowest I've had at .35) and slightly elevated light chains.
Is the one on your neck in the bone or outside of the bone?
My myeloma specialist at Dana Farber said he'd never seen plasmacytomas develop on someone with good blood numbers so he was hesitant to say that's what they were. That doesn't make me feel better. Ha!
I'm not on Pomalyst, but I've had plasmacytomas develop while on treatment. I had some on my forehead at diagnosis. They went away after 2 cycles of RVD. Then, at the end of 6 cycles of RVD and prior to transplant ,I had one develop on the side of my head and some on my forehead again. They flattened after Cytoxan and melphalan at the harvest and transplant.
Eight weeks post transplant they developed again. My doctors are not convinced that is definitely what they are, but they went away after one cycle of RVD, so I believe they are plasmacytomas. Now I've had 2 cycles of RVD for consolidation and am finishing a reduced RVD dosage for maintenance and they are back a little bit.
To me, they are disturbing and I can't keep from touching them. To the doctors, they are surprising, but just part of a whole picture that we need to keep an eye on. I asked for full skeletal surveys to make sure that bone destruction isn't going on everywhere, and the report said that my bones are about the same. It's a mystery. My doctors are focused more on my blood labs, which show a low M-spike (lowest I've had at .35) and slightly elevated light chains.
Is the one on your neck in the bone or outside of the bone?
My myeloma specialist at Dana Farber said he'd never seen plasmacytomas develop on someone with good blood numbers so he was hesitant to say that's what they were. That doesn't make me feel better. Ha!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Plasmacytomas appearing while on Pomalyst
I find this post interesting and would love to hear your outcomes. My sister has developed numerous plasmacytomas after one round of Kyprolis and dex. We are now trying a more aggressive combo to try and get this under control. It appears these things have penetrated the pancreas. Most aren't tender, just disturbing to find.
Joy, you're very smart to order a full body scan. I wish my sister would've been able to tolerate it when this was initially diagnosed. Unfortunately, the tumors had already started fracturing her bones and she was in too much pain. Now I'm praying these treatments work.
Wishing you both the best.
Joy, you're very smart to order a full body scan. I wish my sister would've been able to tolerate it when this was initially diagnosed. Unfortunately, the tumors had already started fracturing her bones and she was in too much pain. Now I'm praying these treatments work.
Wishing you both the best.
Re: Plasmacytomas appearing while on Pomalyst
I have seen this come up several times on different posts, so I wanted to reply to Joy's comment about her doctor:
"My myeloma specialist at Dana Farber said he'd never seen plasmacytomas develop on someone with good blood numbers so he was hesitant to say that's what they were."
That's the third doctor I have recently heard about saying the same kind of thing. I can tell you, though, it absolutely can happen. My husband has had an m-spike of 0.0 since his transplant, but relapsed with plasmacytomas 8 months after the SCT. We know for sure the tumors were myeloma because we had them biopsied.
If you are developing plasmacytomas during treatment, it doesn't mean you have to give up, though. Some drugs that work well for myeloma in your marrow (and the blood work) don't always work as well on plasmacytomas (if you do a search on the Beacon, there are a couple of papers on this), and vice versa. You may just need a different cocktail.
It took several tries to get a combo that worked for my husband, but he has been holding the tumors at bay for about a year and a half since his relapse.
Just keep swimming!
"My myeloma specialist at Dana Farber said he'd never seen plasmacytomas develop on someone with good blood numbers so he was hesitant to say that's what they were."
That's the third doctor I have recently heard about saying the same kind of thing. I can tell you, though, it absolutely can happen. My husband has had an m-spike of 0.0 since his transplant, but relapsed with plasmacytomas 8 months after the SCT. We know for sure the tumors were myeloma because we had them biopsied.
If you are developing plasmacytomas during treatment, it doesn't mean you have to give up, though. Some drugs that work well for myeloma in your marrow (and the blood work) don't always work as well on plasmacytomas (if you do a search on the Beacon, there are a couple of papers on this), and vice versa. You may just need a different cocktail.
It took several tries to get a combo that worked for my husband, but he has been holding the tumors at bay for about a year and a half since his relapse.
Just keep swimming!
Re: Plasmacytomas appearing while on Pomalyst
Thanks Ladyaero,
May I ask what's working for your husband right now? I know it might not have the same effect for me, but it might be good info to have when I see my doctor again.
Thanks for your comments!
May I ask what's working for your husband right now? I know it might not have the same effect for me, but it might be good info to have when I see my doctor again.
Thanks for your comments!
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
Re: Plasmacytomas appearing while on Pomalyst
Joy,
My husband was on Velcade, dex & Cytoxan for about a year, and that worked really well. They had to take him off of the Velcade in December for a break from the side effects (he gets bad neuropathy), so he has been on dex & Cytoxan alone for 3 months. There are some rumblings in his blood work and one very small possible lump, but, so far, not enough to justify adding the Velcade back in.
Just a note ... Unfortunately, Kyprolis did not work for my husband, and he is allergic to Pomalyst and Revlimid. So I can't really give info on those.
My husband was on Velcade, dex & Cytoxan for about a year, and that worked really well. They had to take him off of the Velcade in December for a break from the side effects (he gets bad neuropathy), so he has been on dex & Cytoxan alone for 3 months. There are some rumblings in his blood work and one very small possible lump, but, so far, not enough to justify adding the Velcade back in.
Just a note ... Unfortunately, Kyprolis did not work for my husband, and he is allergic to Pomalyst and Revlimid. So I can't really give info on those.
Re: Plasmacytomas appearing while on Pomalyst
Thanks Ladyaero!
I'm on Velcade, Revlimid, and dex, but I've had Cytoxan for my harvest and it took the bumps down. Of course, the dose was huge for that, but maybe that would still work. I'll see my specialist next week.
I appreciate your reply and wish you and your husband well.
I'm on Velcade, Revlimid, and dex, but I've had Cytoxan for my harvest and it took the bumps down. Of course, the dose was huge for that, but maybe that would still work. I'll see my specialist next week.
I appreciate your reply and wish you and your husband well.
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Joy - Name: Joy
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 52
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