9 replies to this topic

[Melanie]

Been following the comments in this community for a while and have to say what a wonderful family! I was dx last May and have been on the roller coaster with the rest of you since then. My question is if there's anyone out there taking Neupogen shots while staying on Sprycel or Tasigna. I've been on Tasigna and Gleevec and have almost immediately gotten neutrophenia. Neuts drop to an average of .3 and stay there for weeks even after staying off drugs for weeks at a time. This last time I was off for over 70 days and my blood counts just barely slipped into the normal range. Had 1 day on 100 mg Sprycel and it put me in bed with incredable headache and flu symtoms where I couldn't function, so my onc took me off.

A little history: When dx, I was put in hospital with 105 fevers that were unexplained. While there it was determined I had CML as well as active CMV and then due to all the antibiotics I had C-diff. Once home, my onc stared me on 300 mg Tasigna, then moved me up to 600mg after 3 weeks. Four weeks later my WBC was at 1.1 and Neuts at .2. Stopped Tasigna and then two weeks later when my counts dropped even more I had 7 Neupogen shots, which brough me back to normal levels. Started back on 150mg of Tasigna after 25 days off...lasted for 29 days, then moved up to 300mg. My WBC and Neuts tanked after 14 days to 1.78 and .4.  Started 400 mg Gleevec 40 days later.  Broke out in full body rash with hives 5 days later. Took Prednisone, rash cleared, started back on just 200mg for 20 days...rash came back and WBC tanked again to 2.2 with Neuts at .4.

During the time that I was messing with the Gleevec, my onc sent me to the Mayo clinic for a transplant consultation. Decided it wasn't time yet to resort to that, but typed my brother just in case, who turned out not to be a match. There is one good match available though from the registry. My Dr from Mayo suggested I try Sprycel. My Onc thought that odd since Sprycel is even more myloid depressive than Tasigna, but wrote me a script for it anyway.  So after the 70 days it took for my WBC to recover from the Gleevec, I took the single dose of Sprycel and ended up in bed. My Onc sent me back to the Mayo clinic, where my Dr said if I was his wife, he would still keep trying drug therapies before the risk of a transplant. Think he feels I haven't given them a good enough chance yet and that my onc may be overly cautious. Suggested starting at very low dose every other day, then gradually increase as my body adjusts. Sounds good to me. Read about people trying Neupogen shots along with the TKI drugs, so that's where I'm at. With my WBC and Neuts near normal, started on 50 mg Sprycel every other day for a week, with no damage to WBC. My Onc then started me on Neupogen shots...Had 3 and my WBC went to 18.2, with Neuts at 13.5. Moved Sprycel up to 50 mg every day and still getting daily Neupogen shots. There's my concern...daily when my counts went up so quickly? I questioned my onc on this and he said he's trying to get my system to enough of the drug to help without my WBC taking a dive. Thoughts anyone? Sorry for lenghtly story...

[scuba]

Wow .... Where to begin.

I had a similar path that you are on now.  I am very sensitive to TKI's in causing myelosuppression. My Neut's actually went as low as 0.1 ...

I was off Sprycel for 3 months before my counts recovered sufficiently for me to re-start.  But this is where my path is different than yours.

Dr. Cortes dropped my dose immediately from 70mg and re-started me at 20mg. once my Neutrophils went above 1.0. After the re-start, my Neutrophils fell again to 0.5, but he kept me on it. The following week my Neutrophils went to 0.7 and Dr. Cortes was pleased. He did not suggest Neupogen AT ALL. He told me that he would rather "pulse" me with Sprycel for an extended time in order to manage the myelosuppression and get my body use to it. If my counts dropped, he would take me off until recovery and then re-start. He told me that I am very sensitive to Sprycel (as you are) and that the CML is taking a big hit. He also told me that as a result - I have few normal blood cells to make up the difference as yet. So I said - how about Neupogen? He said - jury is out (my phrasing) on whether Neupogen stimulates the cancer. I believe it does. He prefers not to use it if at all possible. Instead - he wants my body to make more cells naturally while off Sprycel. I asked - doesn't that allow the cancer to grow also. He said yes - but only in concert with normal cells. As long as I was myelosuppressed, he said my body is also re-populating with normal cells. Then we hit the cancer again with Sprycel to keep pressure on the CML while we recover. And that's what happened. It took 3 months, but the 20mg. did the trick. I still have some myelosuppression, but it is steadily improving to well over 1.0 now. And most important - my CML is at 0.06% PCR (zero Fish). I want to add that Dr. Cortes was going to increase my dose from 20 upwards, but when he saw the PCR response he decided he wanted me stay where I am. He has had a lot of success with low dose.

You may actually be one of the lucky ones who do not need normal 100mg or higher dose Sprycel in order for it to be effective. Imagine being on 20mg. Sprycel with no side affects (I have none) and the CML still gets whacked. You might suggest that to your doctor.

Dr. Cortes is a specialist researcher in CML. He had no qualms about experimenting on a personal basis with me to get the dose right and balance the myelosuppression. At no time did he want me to take Neupogen. Please keep that in mind.

All the best to you for quick balancing.

Michael

[pamsouth]

scuba wrote:
Wow .... Where to begin.
I had a similar path that you are on now.  I am very sensitive to TKI's in causing myelosuppression. My Neut's actually went as low as 0.1 ... 
I was off Sprycel for 3 months before my counts recovered sufficiently for me to re-start.  But this is where my path is different than yours.
Dr. Cortes dropped my dose immediately from 70mg and re-started me at 20mg. once my Neutrophils went above 1.0. After the re-start, my Neutrophils fell again to 0.5, but he kept me on it. The following week my Neutrophils went to 0.7 and Dr. Cortes was pleased. He did not suggest Neupogen AT ALL. He told me that he would rather "pulse" me with Sprycel for an extended time in order to manage the myelosuppression and get my body use to it. If my counts dropped, he would take me off until recovery and then re-start. He told me that I am very sensitive to Sprycel (as you are) and that the CML is taking a big hit. He also told me that as a result - I have few normal blood cells to make up the difference as yet. So I said - how about Neupogen? He said - jury is out (my phrasing) on whether Neupogen stimulates the cancer. I believe it does. He prefers not to use it if at all possible. Instead - he wants my body to make more cells naturally while off Sprycel. I asked - doesn't that allow the cancer to grow also. He said yes - but only in concert with normal cells. As long as I was myelosuppressed, he said my body is also re-populating with normal cells. Then we hit the cancer again with Sprycel to keep pressure on the CML while we recover. And that's what happened. It took 3 months, but the 20mg. did the trick. I still have some myelosuppression, but it is steadily improving to well over 1.0 now. And most important - my CML is at 0.06% PCR (zero Fish). I want to add that Dr. Cortes was going to increase my dose from 20 upwards, but when he saw the PCR response he decided he wanted me stay where I am. He has had a lot of success with low dose. 
You may actually be one of the lucky ones who do not need normal 100mg or higher dose Sprycel in order for it to be effective. Imagine being on 20mg. Sprycel with no side affects (I have none) and the CML still gets whacked. You might suggest that to your doctor.
Dr. Cortes is a specialist researcher in CML. He had no qualms about experimenting on a personal basis with me to get the dose right and balance the myelosuppression. At no time did he want me to take Neupogen. Please keep that in mind.
All the best to you for quick balancing.
Michael

Thanks for the info on the

Neupogen

PamSouth

[Melanie]

Thank you for your very informative response. I'm fearful of the neupogen and now that I'm on my 7th day, I think I will stop, till I can talk to my onc again and show him what your experience has been. I have CBC done again on Tues and will see him on Weds. Will keep taking the 50mg a day of Sprycel. Sound about right?

Have you ever been on Tasigna? Was thinking of going back to it for finacial reasons. Co-pay less on Tasigna than Sprycel by about a $1000 a month.

Thank you again for your input and to everyone on this wonderful forum. It's very uplifting!

Melanie

[scuba]

Melanie - I have never been on Tasigna so I can not comment on it. My experience is with Gleevec and Sprycel.

I would not change anything you are doing until you speak with your doctor and discuss. You would want his support for whatever you do.

It's good, however, that you have additional information from which to have that conversation. What these doctors do is as much 'art' as it is science. Quite frankly they guess. If something doesn't work, they try something else. The good news (if there is such a thing) with CML is that it is slow moving in chronic phase - it gives the doctors time to evaluate. My approach with Dr. Cortes is to tell him what I want to do and ask him if he disagrees. Dr. Cortes first wanted me to go on Tasigna. I told him I wanted to go on Sprycel since Tasigna is very similar to Gleevec in geometric structure and I failed Gleevec whereas Sprycel works very differently and targets higher up the cell chain. He said - "o.k.". I told him I would prefer not to take Neupogen to stimulate my Neutrophils and potentially stimulate the cancer. He said, "o.k.". I told him I want to increase my Sprycel dose from 20mg to 40mg. after my myelosuppresson began to fade. He said, "nope - don't do that". I said, "o.k.".

At the end of the day, we all have to be our own advocate with the doctors and learn as much as we can.

[pamsouth]

Scuba, I want you oncologist!  PamSouth

[pamsouth]

mbrown2010 wrote:
Thank you for your very informative response. I'm fearful of the neupogen and now that I'm on my 7th day, I think I will stop, till I can talk to my onc again and show him what your experience has been. I have CBC done again on Tues and will see him on Weds. Will keep taking the 50mg a day of Sprycel. Sound about right?
Have you ever been on Tasigna? Was thinking of going back to it for finacial reasons. Co-pay less on Tasigna than Sprycel by about a $1000 a month.
Thank you again for your input and to everyone on this wonderful forum. It's very uplifting!
Melanie

I am on Gleevec, currently the cost is just under $6000.00, 30 days supply of 400 mg.  I was just wondering if you know what the Total cost for Sprycel is and the dosage, vs Tasigna & the dosage?  Just curious as insurance complains about the cost of Gleevec so If I changed TKI it would have to be approved by my insurance, so just wondering about the cost analyses.

PamSouth

[Melanie]

Hi Pam,

I have to get any of the TKI drugs pre-approved by my insurance and they have always approved them. Not sure what the original cost is on the Sprycel, but best I can figure, it's around $8400, cause my co-pay is $1700 and my insurance pays 80%. On the Tasigna and Gleevec, I qualified for co-pay assistance from Novartis (PSI), which brought my co-pay down to about $650. I believe the original cost was about the same.  As for dosage, I've been on several different ones and it doesn't make a difference on the cost of the drug...co-pay remains the same. On the Tasigna, and this was last year, I got my first 3 months free from a program they offered. Not sure if they still do that. Hope this helps you.

I agree with you on Scuba's onc. Sounds very reasonable!

[Melanie]

Thanks Scuba...good advice.  I will continue the shots through this week and confer with my onc about what Dr Cortes has done for you. At one time, my onc though if I wanted to seek another opinion, to go to MD Anderson in Houston, so I know he respects the work being done there. I'm in Arizona and that's an expensive alternative for me, so maybe he'll be responsive to this information. If you or anyone else has any other info to volunteer about drug induced neutropenia, I would be most grateful. Of course the side effects are a whole different area to balance.

Melanie

[pamsouth]

mbrown2010 wrote:
Hi Pam,
I have to get any of the TKI drugs pre-approved by my insurance and they have always approved them. Not sure what the original cost is on the Sprycel, but best I can figure, it's around $8400, cause my co-pay is $1700 and my insurance pays 80%. On the Tasigna and Gleevec, I qualified for co-pay assistance from Novartis (PSI), which brought my co-pay down to about $650. I believe the original cost was about the same.  As for dosage, I've been on several different ones and it doesn't make a difference on the cost of the drug...co-pay remains the same. On the Tasigna, and this was last year, I got my first 3 months free from a program they offered. Not sure if they still do that. Hope this helps you.
I agree with you on Scuba's onc. Sounds very reasonable!

Wow $650.00 a month right? $650.00 a month would hurt us.  We are both retired, and do have income, but that is a chunk, $7,800 a year for the TKI, even with assistance from Novartis!!  You would think the dosage would make a difference, like Tasigna at 600 mg vs 300 mg, that would be 1/2 (cost)?  So Bristol Myers maker of Sprycel does not have co-pay assistance?

I remember when my prev Oncologist wanted me to switch from Gleevec to Tasigna.  I told her I was a bit worried about the insurance paying, as they have gotten strick this last year.  I use to get a 90 day supply, Now I get a 30 day supply and sometime they would only ship it like 1 day turn around.  Plus in Dec I get a letter from insurance that doctor has to call this number and say I still need TKI, DUH!  Then I get a letter from insurance approved but subject to change on a daily basis, based on the world economy. Plus I told her Gleevec will become generic in 2015 making is affordable, and I won't have to worry if my insurance doesn't want to pay, or decides I have to pay a big co-pay.

Anyhow my prev onc said if my insurance doesn't pay for the Tasigna, she would make sure I got the medicine.  Now I am thinking to myself that is kind of scary, to depend on her, I mean what kind of pull would she have.  As everything has guidelines.  Yes I have heard about 3 months free, but then once your on the drug, if you can't meet the co-pays, then you have to start all over on a less expensive TKI, I guess?

Thanks for your reply, trying to get all my ducks lined of if I ever need to change TKI. 

PamSouth