[Christina]

Low neutrophils with Pomalyst

by Christina on Mon May 11, 2015 2:47 pm

I just finished my first cycle of Pomalyst (pomalidomide), 2 mg for 21 days.

I just got my blood panel back and, oh my, my neutrophils are at 925/ul.

I haven't had this before ever on Revlimid. My WBC is 2.6 thousand/ul, so that's low too. My RBC is 3.6, so ok.

I had my test Friday and took my last pill Thursday night. So, I suppose maybe I didn't have time for the ANC to go back up. Should I be concerned. I feel fine.

As I said, I've never had it this low. Hummm ...

[Dr. Jatin Shah]

Re: Low neutrophils with Pomalyst

by Dr. Jatin Shah on Wed May 13, 2015 12:01 am

It is common to see low blood counts with Pomalyst, especially after measuring the day after completion of Pomalyst. This is expected and I fully anticipate it will improve after a 7-day rest.

There is nothing to worry about and it should not affect subsequent therapy.

All the best.

[SamM]

Re: Low neutrophils with Pomalyst

by SamM on Wed May 13, 2015 12:13 am

Christina

I have just started Pomalyst (pomalidomide) 3 days ago. I am on 4 mg daily for a 21 day cycle, and 20 mg dexamethasone weekly.

I have been advised by my doctors to expect low blood counts as a side effect of this treatment.

I will post my blood results at the end of the first cycle.

1. How are you feeling after the first cycle?
2. Do you feel worse on your week off?
3. How are the other markers? Free light chains?
4. Anything else I should be looking forward to or concerned about?

Thanks,
Sam

[turpie]

Re: Low neutrophils with Pomalyst

by turpie on Wed May 13, 2015 11:34 am

Christina,

My experience with pomalidomide was nearly the same. After a 21-day cycle on 4 mg, my neutrophils were <450. I waited 13 days before restarting. The neutrophils made a recovery enough to re-start a 3 mg cycle. The neutrophils went back to < 450, and I came down with pneumonia (a 3-week battle!). I have not had the drug since.

Bill

[Christina]

Re: Low neutrophils with Pomalyst

by Christina on Thu May 21, 2015 12:32 pm

Update from before ... I did one cycle of 2 mg Pomalyst. It didn't bring my light chains down, they even went up slightly. But the big issue is after 12 days from my last pill: my neutrophils are still only at 1100 ul, I've never had my neutrophils not bounce back.

So does this mean I probably can't use Pomalyst? I'm feeling pretty upset since I was on Revlimid for 5 years and never had this issue. What are my options?

He(my doctor) said blood test in another week. Ok, but if this happens after every cycle, that can't be good. All my other labs bounced back up, WBC, RBC.

Any ideas? Suggestions?

[rumnting]

Re: Low neutrophils with Pomalyst

by rumnting on Fri May 22, 2015 8:08 am

If your doctor is ok with it, I'd give it a little longer. My husband's neutrophils got down into the 400s with his first round. They have not been a problem since then (6 months). His hemoglobin does get low and he requires a transfusion most months.

[Christina]

Re: Low neutrophils with Pomalyst

by Christina on Fri May 22, 2015 8:43 am

Really, that is very interesting. Yes, I'm waiting another week. I'm really hoping it goes back up. I know it will at some point. So, thanks for that info. It makes me feel a lot better hearing about that.

[JimNY]

Re: Low neutrophils with Pomalyst

by JimNY on Mon May 25, 2015 9:04 am

Thanks, Christina, for posting updates on your experience with Pomalyst. I hope that your white counts come up and that you get a good response to the Pomalyst.

One thing to keep in mind as you see how you respond to Pomalyst is how long you were treated with Revlimid before you went on to Pomalyst. If I remember correctly, you were treated with Rev­limid for many years. Pomalyst is in the same class of drugs as Revlimid, so people who have been treated with Revlimid generally are somewhat less likely to respond to Poma­lyst than people who haven't been treated with Revlimid. I also suspect that, if you looked at the data closely, you would also find that the longer people were treated with Revlimid, the less likely they were re­spond to Pomalyst.

I say this because I don't want you to be discouraged if it turns out the Pomalyst doesn't work for you. That doesn't necessarily mean that other drugs that are out there, like Kyprolis, won't work for you.

Good luck, and please keep us updated on how your treatment is going. I'm sure I'm not the only one interested in hearing more about your experience.

[SamM]

Re: Low neutrophils with Pomalyst

by SamM on Mon Jun 01, 2015 4:23 pm

Good day

First cycle on Pomalyst has not been easy. I am on 4mg daily and 20mg of Dex weekly. On day 17 I started feeling really weak, fatigued, swollen ankles & feet, fluid retention, etc, ( I also suffer from Amylodosis) with heart, kidney, liver involvement.

I have had 9 cycles of Revlimid which was stopped only 5 weeks ago.

The following are my my last bloods results which were done on the 27th May ( day 18 of the first cycle). Australian measures.

WCC- from 6.02 to 3.89
PLT - from 51 to 26
HB - from 89 to 83
Neutrophils absoulte 3.8 to 2.0
Free light chain (Lambda) went from 150 to 159 with Kappa/lambda ratio from 0.16 to 0.21.

The worst was my heart markers - pro BNP went from 328 to 634 which is causing my liver to enlarge due to the fluid retention and lack of blood flow.

I will have a blood transfusion on Wednesday morning and it was decided that we continue with the current treatment.

I asked my doctor if we need to reduce the dosage but he said that it was early stages and we should continue with this treatment and to advice him if I don't feel better after the blood transfusion.

I guess that the results are pretty consistent with what others have experienced with Pomalyst.

Soldier on and remain positive.
Sam

[Christina]

Re: Low neutrophils with Pomalyst

by Christina on Tue Jun 02, 2015 10:15 am

Sam, sorry to hear this has been so difficult for you. I hope you're able to continue with treatment.

Update for me: After 18 days, my neutrophils jumped to over 2000 so I'm happy with that. I started cycle 2 of 2 mg Pomalyst and 20 mg dex. I'm hoping the ANC doesn't tank again but at least I know with time they'll bounce back up.

The bigger question is: Will it bring my kappa light chains down? I was just sent my next cycle of Pomalsyt so I know it won't be the 4 mg. But if the 2 mg doesn't change anything, I know he'll increase it the next time. So far no side effects, I feel fine.

Thanks, JimNY, that's good advice and appreciated.