10 replies to this topic

[xxgirl]

I know that others here  have dealt with pancytopenia due to tki treatment; my question is when should I be concerned?

 

 I was diagnosed a little over a year ago, and was on Gleevec 400mg until mid February when my PCR went from 6% to 46% in three months.  I've switched to Sprycel 100mg, and have been on it for 9 weeks, but my blood counts keep dropping.  Right now, platelets are at 48, hemoglobin at 8.9, wbc 3.7 and and anc is 1.0.  How low is too low?  I know that I'm anemic, and have been having headaches, occasional nausea, and am cold ALL of the time, but my PCR is still very high for being 1 year post diagnosis, at 27%.

 

I had no problems with pancytopenia on Gleevec.  Occasionally my hemoglobin was borderline low, but all other counts were relatively good.  Why now?  I would think that after 13 months on a tki, my "good cells" would have stepped up to the plate and upped their production.  

 

My onc seems mildly concerned, but said only that my platelets are still adequate above 20.  I have to pay him his $60...oops, I mean see him again, in a week.  He said that if my blood counts do not go up, we'll have to consider a drug break, but with my PCR still so high, I'd be reluctant to do that.  Should I, instead, suggest a lower Sprycel dosage?  Is it possible that a lower dosage would allow my counts to recover, without letting the Ph+ cells to get out of control again?

[pammartin]

Sprycel seems to hit hard with some people.  My labs kept dropping once the TKI kicked in till I finally had to take a break.  I think it was two weeks or so, but I didn't have an issue with rising PCR.  There are many who will give you good information and advice when they read your post. 

 

Just wanted you to know someone was reading and listening.

 

Pam

[xxgirl]

Thanks Pam -
I know that there is no standard response - that everyone is different - its just so discouraging - every time I get lab results I feel like I've failed a test!

[Trey]

Because you never had a BMB you are lacking some information which might be necessary to make an informed decision.  Your blast count was rather elevated at diagnosis, but you do not know what other possible issues exist.  You really should have a BMB done now.

 

It is discouraging to fight two issues at once, both working against each other.  There is no perfect answer to the three choices: 1) keep doing the same thing and hope counts remain at current marginal levels, 2) take a drug break to hope it provides a reset, 3) reduce dosage.

 

If you are going back to the same hapless Onc he will not want to do the BMB now -- that would admit an error on his part.  I would find a new one right away and get started in the right direction with a BMB to find out what you should do.  Until then I would stay on the higher dosage as long as possible.

 

I don't know if anyone gave you inputs about a new Onc.  LA has a number of them.  Here are a couple options:

Dr Paquette at UCLA:

http://www.cancer.uc...45&recordid=198

City of Hope:

http://www.cityofhop...ecome-a-patient

[xxgirl]

I have an appointment with a new oncologist but not for another 3 weeks. Because my blood levels are continuing to trend down I don't feel like I can forgo being monitored my by current onc right now, hapless though he may be. And you're right, he's not going to order a bmb, so I will have to make a decision based on the info that I do have.


Thank you for the info for oncs in the LA area. If the next one is no good I will try to go to City of Hope.

[hannibellemo]

Hi, xxgirl!

 

When my onc dropped to .09 my local cancer center onc gave me a drug break. I saw my Mayo onc a few weeks later and he said they wait until .05 to stop the drug but he didn't have a problem with the early break my other onc gave me. I have also heard 20 for platelets and my Mayo onc told me when I was first dxed and my hemoglobin was 8. something to get a transfusion if it dropped to 8 or below because otherwise I would feel like crap (my words, not his), On the other hand, we have someone like Teds whose Hgb dropped to 5 and she was still far active then I would have thought possible! Don't try her way at home!

 

Your wbc is what mine is now after 6 years so no problems there.

 

Let us know how your appointment with the new onc goes!

[Damerault]

I have been on Sprycel and then switched to 300 mg Tasigna which I am on now due to low blood counts. Thank you for teaching me the word pancytopenia I didn't know there was a definition for what I had. My platelets and hemoglobin we're both very low at one point and I received several transfusions of platelets and red blood cells. I believe sticking on the dosage and having these transfusions was the right decision for me. My levels have finally started coming up and by staying on the drug my BCR-ABL is coming down as well.

[Melanie]

XXgirl,
So sorry you're having to deal with pancytopenia as a side effect of your TKI treatment. I know at times it can be very scary and finding the right balance is very difficult.

I have had this since Dx in May of 2011 and have finally found a balance this last year that has allowed me to stay on the TKI non stop and now have a CCyR. It may take some time and some experiments for you, but I'm confident that with a good Onc advising you, you'll get there. I can't stress the importance of finding an Onc that has experience in dealing with pancytopenia in CML Until you do, you'll get advice and treatment that isn't always in your best interest. Those that have experience in treating pancytopenia in CML have a much more confident and reliable treatment protocol.

In the meantime in response to your to your questions of at what point, do you get concern on your lab results. Typically when your ANC are .50, it will be suggested to take a drug break or start Neupogen shots. Depends on your Onc's belief system on whether the shots are more dangerous than taking the drug break. In my case we went with the shots. I still get them when needed. The hemoglobin point is usually 8.0 or below. Treatment is usually a transfusion rather than drug break. I've had many, but now my HBG has leveled out to 9.5-10.0.

Platelets are different It rally depends on what your body is able to handle. Some people are fine with seriously low platelets and others are not. My onc gets concern with anything below 30. The only real treatment are transfusions and or a drug break. I'm on a clinical trial drug that is keeping my platelets around 80-90, but it's hard on the liver and GI system. Not sure how much longer I'll be able to stay on it.

Basically what all this means is you need to find the balance that keeps you on the TKI with the least adverse effects. The treatment an that does that is your goal. Fortunately there are many paths to get there.

Please keep us updated on your progress. Best to you!
Melanie

[xxgirl]

Thank you all for the response.  I know that a lot of people on here deal with low blood counts at some point during their treatment, but I didn't realize that it was something that could drag on for years!

 

Diane - My onc hasn't mentioned transfusions, only a drug break, which I would be reluctant to do right now, since my PCR is still so high.  If my reds or my platelets drop lower, I'll suggest that before taking a drug break, although, he doesn't really respond well to questions or suggestions from me.

 

Pat - Thank you for letting me know your personal experience.  I think that most onc's vary slightly on what they consider dangerous.  And I don't think I'd ever be able to get as low at Tedsey and still be functional.  I'm getting headaches with my hemoglobin at 8.9, I can't imagine getting even lower and chasing around two active toddlers!

 

Melanie- Thank you for giving me the cutoff's for when low gets too low.  My dr. didn't actually tell me my levels, I grab my folder and peruse my latest lab results before he gets into the room, so that I'll know what questions to ask when he gets there.  As I said before, he didn't mention transfusions or neupogen shots, just a drug break, so I'll have to ask about them next time, if the downward trend continues.

 

Thank you to everyone on this forum that share your expertise, your personal experiences, your considerable knowledge.  To everyone that celebrates the victories and commiserates the set-backs.  It's an amazing resource!

[PJM]

I have been dealing with pancytopenia for months since I have been on ponatinib.  I am going to City of Hope ( a great place by the way should you choose to switch oncs).  My doctor feels that lowering my PCR is the most important objective in my treatment and he will supply blood products or neupogen shots as needed. I have never had a drug break.  I receive a platelet transfusion when they are 15 and lower; whole blood at 8.0 and lower; and neupogen shots when my WBC is 2.5 or lower or my ANC is .50 or lower.  I have had numerous shots (at least 1 if not 2x a week);  and transfusions (at least 1 platelet transfusion a week and whole blood transfusions about every 2 weeks).  Awaiting latest PCR results from test performed on Thursday.  Previous PCR was 10.8; lowest I have had is 9.0.  I am a year since diagnosis and have been on both Tasigna and Sprycel.  Hope this helps, and good luck.  

[xxgirl]

Thanks PJM.  I believe that you and I were diagnosed right about the same time in April 2014, and you have had to deal with low blood counts much longer than I have.  I just wanted to make sure that I'm still good to do all of my regular activities, and that I'm not going to pass out or something while I'm standing in line at the bank.  

 

I hope that you're PCR results come back lower than ever before!