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I guess I'm going to Pittsburgh

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#1 Guest_billronm_*

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Posted 05 April 2013 - 10:52 PM

  Hi Everybody,

     I had my 2 week follow up after my pe with my onc today. He want's me to get another opinion from an onc in Pittsburg. Since I couldn't take Gleevac, and the pe was from Sprycel I guess he want's me to get a second opinion on what I should try next. He wanted me to get a chest x-ray today but the technicians had already left. Nice huh! So I have to go back on Monday to get one. He mentioned hydrea to me, I only told him I have heard of it . I didn't ask him why he mentioned it my mind went south when he said that. Could he be planning on putting me on hydrea until a new tki is recommended? What is Hydrea and what are the side effects? I thought that stuff was history! He did bw today. I don't think I lost my pcr.

I do think I'm losing my mind, Is all this stuff he's doing normal? I tried to talk him into trying sprycel again, no luck! I guess I just needed to vent, sometimes I just get so tired of all this crap. I really thought Sprycel was the drug for me. Now my mind is blowing everything out of proportion at the thought of taking hydrea or another tki.            Billie

#2 hannibellemo


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Posted 06 April 2013 - 08:40 AM

Hi, Billie,

I don't  think I love your doctor! Hydrea is a chemotherapy drug that was used to control high platelets and wbc before TKIs and more recently docs used it to bring very high counts down to a more tolerable level quickly consecutively, or worse, concurrently, with TKIs. This drug does not treat the leukemia just lowers high counts. No reason for you to take it since after only 2-3 weeks off Sprycel, I don't think you've lost any ground. if your onc is suggested this as a treatment (which it is not!) because you've run out of options, which you have not - run to a new doc!

When the PE is totally gone I don't see any harm in trying it at 50mgs again. It will either work or it won't and your PE may return. You could even try 20mgs for a bit and then increase after a few months.

Of course, I'm not privy to your other health issues and I've only stayed at a Holiday Inn Express a few times, I never actually got my license to practice medicine!

If he doesn't want you back on Sprycel, why the hell doesn't he just put you on Tasigna?  Save you the travel wear and tear and money, too.

My two cents!




"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

#3 Trey


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Posted 06 April 2013 - 09:07 AM

Hydrea is not a useful option.  It would just put your blood counts into a tailspin.  The primary choice is which TKI drug to use and dosage.  You could:

1) Re-start Sprycel at a lower dose (this is what most Oncs would do)

2) Switch to Tasigna, Bosulif, or Iclusig (probably Tasigna or Bosulif are better options since Iclusig can cause PE like Sprycel)

You could ask your Onc to consult with another Onc to get an opinion on the above options. 

#4 pamsouth



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Posted 06 April 2013 - 10:07 AM

Hi Billie,  Right after my diagnoses of CML, I was on hydrea right away for a month, I had two million platelets.  Nothing else was really high not even my white cells, my granulytes were slightly off.  The Cancer Center pretty much new is was CML because of the combination, of high platelets, slightly high white counts and my granulytes.  It took me a long time to realize why I had such high platelets because platelets are not nuecleus at the bottom level.  But when the bone marrow create the mutated stem cells, it is in the myeloid blood side that originally was nucleus before it became a platelet as platelets are not nucleus with the PH+, so at some point the CML is in everything at different levels, before the final end stage. The 2nd reason I was on hydrea, in about a month there was a clinical trial, starting near me in about a month,  of 400mg vs 800 mb on Gleevec.  To start that trial you could not have taken or ever been on Gleevec.  I did go see the hematologist  about about the clinical trail, a 2 hour consultation and took home a ton of paperwork to read and sign, I did not do the trial for a several reasons.  Anyhow back to the hydrea, for me it was awful, I was terrible sick the whole time, I ended up going to the ER, I thought I was having a heart attach, felt like an elephant was on my chest.  My pulse was racing.  I called the hematologist and she said not to worry my body was going thru drastic changes, I went to the ER anyhow, the doctor want to keep me overnight, but the hematologist told him to release me, I think he felt bad for me.  I was actually take triple dosage.  So all my counts plummeted.   I broke out in a horrible itchy rash, they gave me something for.  I was never so glad to get off of it and go on Gleevec. For me it was terrible.  It even took my blood pressure down to an extremely dangerous low level along with everything. Mouth sores, everything.  Again I was on a very high dose to get my platelets down, and wait to see if I was going on the clinical trial.  If I had to do it over I would have immediately went on the Gleevec.

Perhaps he will put you on a much lower dose than I was on. 

Best Wishes Pam South


#5 Susan61


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Posted 06 April 2013 - 12:00 PM

Hi Billie:  Hydrea is also used to prevent the growth of cancer cells.  Your doctor could be recommending it for that purpose until they can figure out what you can take.  After I failed the Interferon and Ara-C Treatment, and they decided I had to get a BMT.  My Oncologist had me on the Hydrea for 6 months.  I do admit it made me feel terrible as I ran around for all kinds of opinions regarding the BMT.  I had no match, and I was on Hydrea from May till Oct. of 2000.

Then thats when I got onto the trial for the Gleevec, and they took me off the Hydrea.  Its too bad you could not take the Gleevec.

     I had no choice but the Hydrea, as there were no TKI's available after the other treatment failed for me.

     I will keep you in my prayers for whatever you have to do.  I would go with what Trey suggested with the lower dose of the Sprycel or the Iclusig or Tasigna.  Then if you have no choice I would go to Pittsburgh.


#6 Headi


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Posted 08 April 2013 - 02:44 PM

Hi Billie, I'm so glad you checked with our wonderfully informative group here before you took the hydrea.  I can't hardly believe your dr. recommended it. I hope you can find some peace about changing tki's. Tasigna is much easier to tolerate than gleevec.  I was in your same sitiuation, could not tolerate the gleevec, and the Sprycel was great, but gave me pe's. My onc put me on Tasigna, but I only took half the dose (my choice) and my numbers began to come up, so he told me I had to go to 300mg x 2 q/d and sent me to Moffitt for a consult. Apparently my local onc didn't use a lab that used the International scale which I guess is why my pcr numbers looked like they were going up. I hadn't had a BMB since first dx in 09 so Moffitt wanted another one. That report found that I was at bcr/abl p210 ratio lower than 0.000001.  I have no idea what that means other than they are very happy with it. I did go on the 300mg twice a day 3 mos. before getting the BMB.  Maybe thats why the labs came out better, I don't know??? Any how I was off all tki's for 6 weeks before Tasigna and had no significant rise in pcr, so hopefully you will not have any problem with a short tki break. I m anxious to hear what the dr in Pittlsburg puts you on. I'm working on getting put back on Sprycel at a lower dose. It brought my pcr numbers down quickly and was very tolerable. You have a great sense of humor, thats good medicine in itself. As they say in Jamaica, "don't worry, be happy". Headi

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