10 replies to this topic

[cpsn0000]

I was diagnosed 10/2010 and was on Gleevec for 3 months on and off with a total of 4 weeks break due to myleosuppression. Then I started Tasigna 01/2011 but only lasted on Tasigna for 5 weeks with the first break for 2 weeks due to rash and then the 2nd break due to low counts. I have been off Tasigna now for 5 weeks and got a wbc shot to increase my neurophils since they dropped last week for the first time in awhile. They are checking me tomorrow to see if my neurophil counts come back up and if not, they want me to consider a BMT. My last counts were this past week was as follows:

WBC 2.1

RBC 3.97

Hemoglobin 12.2

Platelets 109 (back up from 24 4 weeks ago and a platelet transfusion)

Neutrophils 11% (reason for shot)

They will start me on Sprycel at 50mg as long as my neurophils come back up tomorrow which means will be at 2 more weeks before I get my medication sent to me with getting clearance from the pharmacy.

I think this is premature to send me down BMT lane when I still can try Sprycel, then some clinical trial drugs like Bosnotinib which does have such a strong impact on the production of healthy cells compared to the other TKI drugs...

Any thoughts on this? My last PCR was .009027 in January prior to starting Tasigna...

[cpsn0000]

I know myleosuppression can last sometime but can't it be managed with white blood cells shots and platelet transfusions to get through this period? I know I can get a wbc shot that last for 3 weeks and maybe go in weekly for platelet transfusions to help healthy cells populate as the bad cells are killed of.....Any thoughts on this as well or am I being crazy?

Currenlty have my current onc consulting with Dr. Cortes out of MD Anderson in Houston.....

[Trey]

It seems from what you are reporting that the only rationale the Onc is using to suggest a BMT is the percentage of neutrophils.  Actually, a number of others here would like to have your numbers, since they have more severe myelosuppression.  The percentage of neutrophils is not so important, which is why we look more closely at the absolute neutrophil count (ANC).  During myelosuppression the neutrophils will be low, and therefore their percentage will be low.  So what -- that pretty much defines myelosuppression.  Again, your overall numbers look pretty good in relative terms.

Personally, I would scoff at anyone suggesting a BMT based on what you have shown here.  If there was more to it than reported to you, then that could be a different story.  So you should ask directly what makes the Onc believe a BMT is needed.  If it is just the low neutrophil percentage, then just scoff and move on.  Practice scoffing before your next visit to the Onc.  A good scoff is an art.

http://www.fotosearc...DSN009/1779543/

[cpsn0000]

Thanks Trey....Do you remember my original BMB report numbers I gave? It is crazy they want to jump ship because of me being off meds for 5 weeks that they think it will progress..... It is like they wont allow my body to take the time to get through this suppression period between drug breaks and using wbc shots and platelet transfusions to pull me through....

[cpsn0000]

They are afraid it will progress even with being told I am firmly in chronic phase...I will ask for another FISH and PCR test to be done before doing anything like that...The reward is that your chances of being cured are their but the risks of death is also their and some go back on TKI drugs because protein levels shot back up after the transplant...

[Trey]

As with most here who suffer with myelosuppression, you need to get on any TKI drug that works, take it at a low dosage, and stay on it as much as possible.  Your Onc is starting you on 50mg Sprycel, which is good.

[scuba]

I have had severe myelosuppression (ANC = 0.13) and Dr. Cortes did NOT want to give me stim shots.  Instead, he wanted to let my system recover naturally.  It's been 8 weeks and I still have not re-started Sprycel.  I see Dr. Cortes (his lab anyway) on Thursday for a re-test of my FISH and PCR.

Personally - you are fine.  As Trey said, you have great numbers and BMT is definitely a last resort.  Unless you have increasing blasts - you have a situation where your bone marrow is trying to recover to normal. 

[LCasey]

This disease is so confusing! And our doctors seem to be treating it so differently!

I too have had severe mylesuppression with an ANC of .2.... or maybe it was .1... anyway. My platelets were their lowest at 51.But no stim shots, no transfusions.  I've also had two major drug breaks of a full 3 months each. Which no one seems all that concerned about.

I've gone from Gleevec, to Tasigna, and now hoping to start Sprycel soon. But my oncologist has still not mentioned or recommended a BMT. Our approach is to try Sprycel. If Sprycel doesn't work we are going to get creative with dosage and possibly stim shots. But not down the BMT path yet.

It's good that your oncologist is collaborating with Dr.Cortes though.... how was this set up? I would LOVE it if my oncologist was working with Dr.Cortes.

[CallMeLucky]

I'm certainly no expert, but with your counts and your last PCR, a transplant is not something I would be considering yet.  Your counts are low, but we have other people on this forum who have been lower and are working through it.  Plus with your PCR so low it appears you have time to mull this over.  I would be getting second and even third opinion before transplant.  One major factor in considering a transplant would also be your age and if you have a good donor.

Good luck, I hope your counts start to bounce back soon.

[cpsn0000]

Havn't heard the final treatment plan but they will be putting me on Sprycel at 50mg probably here in the next 2 weeks. My neurophils went up from 11 to 26 after 5 days of getting the wbc shot. I am now working with Dr Cortes and 2 other oncs so I think I have all my 2nd opinions covered. They will manage my mylosuppression with drug breaks, platelet transfusions as needed, and wbc shots as needed.

Again, still waiting to hear final treatment plan moving forward but this seems to be the general idea. We shall see.

I appreciate all the feedback from everyone

[Tedsey]

Thought I would crawl out of the woodwork and say I am a person who would love your numbers.  After a year, my PCR values are higher than yours (if they could be compared), and my WBC and PLT are much lower than yours and have stayed that way since I started TKIs.  I would get a second opinion.  It is hard for me to imagine the people who have been pushed to SCT who did not really need one.

All the best,

Teds