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Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
I am in the NIH trial for newly diagnosed myeloma using carfilzomib, Revlimid and dex. I was to receive my third infusion of carfilzomib this past Friday but was told my ANC---neutrphil count---was too low...only .33. Two weeks ago it was above 1.0. Revlimid is the suspect. My doctor put me on Neupogen right away and is having me come back Monday for the carfilzomib. I am obviously disappointed in the delay but understand the implications of a very low neutrophil count. Has anyone had this problem with Revlimid and did Neupogen work and get you back on track. My doctor doesn't seem alarmed....but I am. Thanks for any input. Terry from NJ
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
I had to skip one treatment early on during my CRD treatment due to low neutrofil as well. I also had two or three occasions where I received neupogen injections. Once the treatment started to kick in and my counts started coming up, I had no further issues. While it is disappointing to have to skip a treatment, try and staty positive, evrything will hopefull improve.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Hi Kevin, thanks for the info. I will find out tomorrow morning if it worked. I also didn't get any bone pain from the Neupogen, so maybe that's a good sign. Honestly, I just can't wait to have a normal CBC again (or at least close to normal!). I want to get back to biking, fishing, playing with the kids, etc. and not feeling a quart or two low all the time. Thanks for all of your columns too! Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
HI Terryl1....sorry to hear that your neutrophil count was too low for chemo. I had that problem on maintenance chemo with Revlimid, after my stem cell transplant. Because I was already close to a CR, my oncologist gave me time off to recover my counts (a week I think was all it took). He also lowered my dosage from 10 mg to the lowest dose, 5 mg. I didn't take any neupogen at that time, although I did have it for the stem cell harvesting. Those sorts of occurrences of low neutrophil counts made me realize how powerful the Revlimid was in affecting my blood system, and I was very susceptible to infections at that time, having a very low immunity. Didn't some folks remind us that the treatments for myeloma are a marathon, not a short sprint, and this sort of thing is an example of that! Hope all goes better this week!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Hi Kevin and Nancy, FYI--the neupogen did the trick. ANC went from 330 to 1240 in less than 3 days. I was able to get the carfilzomib yesterday and will get it today. Next week, is an off week of the cycle. Revlimid really is such a double edged sword. Thanks for your support.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Hi Terry
Glad to hear neupogen did the trick, and you are back on track!!
I agree with you about the double edge of lenalidomide. Although, I have had some low counts they were not low enough to halt therapy, so it is good to learn that if it should occur there are measures to rectify that.
Sometimes, when I am anxious about therapy I feel so like a child. You know how when you were a kid, if mom was upset you were terrrified but as long as she was confident and non-plussed you gained strength from her posture?
Yep, who your doctor is and how they respond can be the only thing imbuing you will confidence to move forward at times.
O could I tell a story about the harvesting process..it was a really HIGH anxiety time, complete with me getting dressed packing and heading home, 3x after a failed femoral cathertization ..I was terrified and not willing to endure anymore..but there was my doctor and the team who brought me back from the brink with concern, logic and compassion...so all turned out well, even as I was freaking out and so I did submit to a jugular catheter despite my terror. There are now standing orders for me to receive big dose of anti-anxiety drug prior to any invasive procedure.
Soooo,
Focus Forward and draw strength as you are in good hands!!
Glad to hear neupogen did the trick, and you are back on track!!
I agree with you about the double edge of lenalidomide. Although, I have had some low counts they were not low enough to halt therapy, so it is good to learn that if it should occur there are measures to rectify that.
Sometimes, when I am anxious about therapy I feel so like a child. You know how when you were a kid, if mom was upset you were terrrified but as long as she was confident and non-plussed you gained strength from her posture?
Yep, who your doctor is and how they respond can be the only thing imbuing you will confidence to move forward at times.
O could I tell a story about the harvesting process..it was a really HIGH anxiety time, complete with me getting dressed packing and heading home, 3x after a failed femoral cathertization ..I was terrified and not willing to endure anymore..but there was my doctor and the team who brought me back from the brink with concern, logic and compassion...so all turned out well, even as I was freaking out and so I did submit to a jugular catheter despite my terror. There are now standing orders for me to receive big dose of anti-anxiety drug prior to any invasive procedure.
Soooo,
Focus Forward and draw strength as you are in good hands!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Hi Suzierose, you and I got the cream of the crop team at the NIH. I know we are in the ablest hands and that keeps me focused and confident.....but what a rollercoaster ride with those blood counts! Terry L from NJ
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Terryl1,
I agree about the rollercoaster ride. While most of my blood counts tended to stabilize as treatment went on, the plot of my white cells definitely resembles a roller coaster, or more accurately a saw tooth. The WBC increases steadily for three weeks, then drops back down. This pattern repeats each cycle. I think it ties to the Revlimid. If I recall correctly, which is always questionable, someone (perhaps suzierose?) indicated the Revlimid cycle of 21 days on, 7 days off, corresponds with Revlimid reaching maximum effectiveness after 21 days, then giving 7 days to recover, then starting over. Since Revlimid is known to lower white cell count, this would align with my drop in WBC, then recovering (i.e. rising) while the Revlimid builds up again.
One other note - as I mentioned earlier, my Neutrophils seemed to level off once treatment started taking effect. However, my Lymphocytes have always remained low and have never gotten back into the normal range. The doctor isn't too concerned about this, and I haven't had any significant issues with infections or healing from injury, so for now we're just keeping an eye on it.
I agree about the rollercoaster ride. While most of my blood counts tended to stabilize as treatment went on, the plot of my white cells definitely resembles a roller coaster, or more accurately a saw tooth. The WBC increases steadily for three weeks, then drops back down. This pattern repeats each cycle. I think it ties to the Revlimid. If I recall correctly, which is always questionable, someone (perhaps suzierose?) indicated the Revlimid cycle of 21 days on, 7 days off, corresponds with Revlimid reaching maximum effectiveness after 21 days, then giving 7 days to recover, then starting over. Since Revlimid is known to lower white cell count, this would align with my drop in WBC, then recovering (i.e. rising) while the Revlimid builds up again.
One other note - as I mentioned earlier, my Neutrophils seemed to level off once treatment started taking effect. However, my Lymphocytes have always remained low and have never gotten back into the normal range. The doctor isn't too concerned about this, and I haven't had any significant issues with infections or healing from injury, so for now we're just keeping an eye on it.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Neutropenia early in therapy should not be overly concerning. It is equated with an increase risk of infection. Treatment with growth factors is important and you are obviously being monitored closely by your team and the NIH. The early reports of the CRD study in newly diagnosed patients quoted grade 3/4: anemia (18%), neutropenia (12%), and thrombocytopenia (10%) at ASH last Decmber. Grade 3/4 anemia (Hgb <8), neutropenia (ANC <1000), and thrombocytopenia (platelets <50,000) So, it is not unexpected. As treatment controls your myeloma this will occur less frequently. Dose adjustments may need to be made, but that will be per protocol.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Low ANC (Neutrophil) Neupogen Treatment....Need Feedback
Thanks, Dr. Shain. I am getting used to the roller coaster treatment patterns and just hoping for the best. I am also being watched like a hawk at the NIH. I understand that Dr. Jakubowiak will be making a further presentation about CRd at ASCO in Chicago next week. When does the full report come out in print? So far, there is only an abstract. Thanks. Terry
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
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