8 replies to this topic

[19withCML]

Hello to all community members, 
 

Firstly, thank you to all community members for keeping the discussions on-going and active. This is the best place over internet to learn from fellow CMLers  .

 

My name is Sid, I am 19 and I was diagnosed with CML on 20th April 2015 with the following symptoms: 

- I had painful Priapism  (a rare symptom of CML which was treated by aspiration)
- Splenomegaly (29 cm)
- My WBC had elevated to 350000

 

Baseline Observation (BCR-ABL)

- BCR-ABL Transcript 107%

 

21st April 2015 - 16th May 2015

My Oncologist started Gleevac 400mg along with Hydra. In few days I stopped Hydra and my blood counts had come back to normal. However after 1 month of Gleevac my platelets reduced to 70000. My oncologist stopped the pill for next 15 days.

 

1st June  2015 - 24th June 2015

My platelets had returned back to normal but WBC had elevated to 45000. I started taking Gleevac 400mg again, but on 6th June my dosage was increased to 800mg a day. I continued taking 800mg everyday but again on 24th June my platelets had reduced to 78000 and Onco asked me to stop the pill.

 

Now
My oncologist took my BCR-ABL ratio but it was not promising at all as BCR-ABL transcript is still 103% which he told is not a good sign but spleen size reduced to 17.5 cm. Finally he has switched me on Sprycel (Dasatinib) 100mg a day as he tells that Imatinib is no longer working. I will be starting with Sprycel on 29th June 2015 (Monday) as I am completing the paper work requirements for the same.

 

My oncologist wants to check if any mutations have occurred and my test is due and I will update about the same as soon as I get the reports.

 

I have following questions from the fellow community members and it will be really helpful for me to manage myself well with your inputs.

 

1. Should I be worried about such a quick Imatinib failure in my case? My oncologist told me that 80-85% people do well on Imatinib in CML. For me its been just 50-55 days.   Please share similar experiences.

 

2. My ever reducing platelet counts while I was on Gleevac. I am now going to start with Sprycel and does anyone has thromobocytopenia as a side effect of taking Sprycel? How do you manage it? Is it okay to go off pill for as long as 15 days to manage thromobocytopenia?  

 

3. My oncologist also told me that if Sprycel does not work then I should be prepared for BMT 

I have 3 sisters and 2 of them are not my match. My 3rd sister will be going for HLA testing in a weeks time and I am really hoping that she is my match. I will update the results for the same. In case of Sprycel failure is BMT the only resort or are there any other options?

 

4. Finally, am I on a right course of treatment?   I know is still too early to ask.  

 

I have all my reports in case more input is required for the discussion. I apologize if I am asking a lot of questions here and thank you to community members for taking out time to share their experiences and guide me.

 

 

 

 

 

 

 

 

 

[CML2012]

You are fine to ask lots of questions here! I think you were not on the gleevec long enough, especially the fact that you stopped taking it for 15 days at a time. Gleevec stopped working for me after 8 months and now I am on sprycel. I have been on sprycel for 21 months. My oncologist always told me it takes at least 3 months to know if the chemo will work. They also said not to miss a day. However my platelets did not drop below 130000.

[hannibellemo]

Welcome, Sid!

 

You've come to the right place with questions and for support.

 

1. Here is a link to a discussion about this very subject that was posted this week.  http://community.lls...-news-bad-news/

 

Within this link is some very good information about CML written by Trey our resident expert; I call it CML 101.

 

2. There is no way to tell at this point whether Gleevec would have worked for you or not. At a maximum you were only allowed to take it 75% of the past two months and depending on how long your second break was that percentage could have gone down to 50%. Drugs only work when they're taken.

 

3. It is way too early to be thinking about a BMT! If that is being pushed on you RUN, don't walk, to another onc. On second thought, do that anyway. CML is a fairly rare leukemia and few docs see a case of it in their career. Many of those that do see it are out of their depth when treating it. I think your onc falls into that category. I don't know where you live but if you let us know perhaps one of us could steer you in the direction of an onc who knows what they are doing.

 

4. There is no doubt that our TKIs can reduce blood counts, sometimes to a dangerous level that may require breaks. You were nowhere near that point at 70,000+ platelets. I think the combination of Hydroxyurea and Gleevec caused the problem. Combining the two is old school thinking. The TKIs alone can lower your counts often without the drastic reductions seen with the combination.

 

5. Sprycel is an excellent drug. Don't be concerned about taking it. I will say that Gleevec will be available in a generic form soon and should be less expensive at that point. If that is a concern and since you don't really know if you have failed Gleevec because you weren't allowed to take it as you should have, you could possibly revisit Gleevec as an option in the future.

 

6. Continue to question your treatment! 

[19withCML]

You are fine to ask lots of questions here! I think you were not on the gleevec long enough, especially the fact that you stopped taking it for 15 days at a time. Gleevec stopped working for me after 8 months and now I am on sprycel. I have been on sprycel for 21 months. My oncologist always told me it takes at least 3 months to know if the chemo will work. They also said not to miss a day. However my platelets did not drop below 130000.

@CML2012, Thank You for your reply. 

 

Do you remember your BCR-ABL transcripts/ readings when you switched to Sprycel? With 21 months of taking Sprycel do you have any significant side-effects and how many mg do you take everyday? My biggest concern are the 15 days that I have been off-pill. But my onco suggested to do as my platelets were going down. I have been doing a lot of research and learning from everyone's experiences - I feel I should have discussed about me being off-pill with my oncologist thoroughly before doing so.

[scuba]

Have you had a FISH test taken? FISH will show the percentage of cells under a microscope that are CML cells. This is a very important number - more important than PCR at this stage. Usually at diagnosis this number is 100% and would be your starting point. Your first goal is for this number to go to zero.

 

BCR-ABL as measured by PCR is largely meaningless in this initial therapy phase. You and your doctor need to track FISH response. It's possible you had FISH taken as well and you didn't report it here.

 

Gleevec is causing you to have myelosuppression (Platelets). I have had that as well when I started Gleevec. You can have Platelets go as low as 50 before needing to stop. But it is important that you have weekly CBC (complete blood count) tests taken so you can track this early stage. The fact that your doctor wants to switch you so soon seems perhaps he is not too familiar with CML treatment. If you do not have significant side effects with Gleevec that is very good and should be a consideration in giving the drug a chance to work. Did you have a bone marrow taken? That will be very informative. If you have few Blasts in your bone marrow (or even none) that supports the fact that you are in chronic phase and have options in terms of time to test things - you can go on and off the medication to get the myelosuppression under control, etc. even while FISH stays elevated. Most patients will adapt to the drug and be able to stay on their drug and then have a better track of response.

 

As your CML cells get killed off - it takes time for your normal system to ramp back up - that's the drop your seeing in your numbers. If during this on again off again approach does not yield in some dropping of FISH then a drug switch may be needed. I started on Gleevec and after six or so months I had to switch to Sprycel. But Gleevec was given time to work. It just didn't in my case.

 

Switching to Sprycel may cause myelosuppression as well. In fact, Sprycel is more likely to cause myelosuppression. It may not be severe enough in your case to stop, but it is possible. It happened to me. And what the doctor did in my case was take me off the drug - let my counts recover and then re-started me on a much lower dose of Sprycel. I still had myelosuppression on the lower dose, but not as bad and I was able to continue on low dose (20mg) from then on. The key part is that on this dose, my FISH went to zero, I had no side effects I could feel and then PCR continued to drop to MMR and then PCRU.

 

Your first year is the key time to get your treatment going steady and you learning what your body is doing and how it is responding.

You will almost certainly not need a BMT. What you are experiencing is common to many many patients at the start. A good Oncologist who has experience will be able to guide you to success.

 

All the best - you are going to be fine.

[Trey]

Sid,

Oncs get overly concerned when they see WBC above 300K.  By itself that does not indicate the disease is "worse" than if the WBC is somewhat lower.  So your Onc overreacted to that.  Happens too often, and the result is always the same -- severe myelosuppression followed by no therapy at all until blood counts rise again, and then it looks like there has been no progress.

 

There is no way to know your current status because the Onc started with Hydroxyurea (HU).  HU does not target leukemic blood cells, but rather kills all blood cells indiscriminately, good cells along with bad cells.  This looks like progress since it reduces WBC, but it is not progress.  Oncs must somehow learn to avoid HU for initial treatment of CML.

 

So there is no way to know what Gleevec did or might have done for you.  It is not Gleevec failure, just an Onc who incorrectly used HU as initial therapy, as we have seen too many times.  Low blood counts occur almost 100% of the time when this approach is taken.  Then they stop Gleevec therapy, which is followed by shock at the poor results and they wonder what happened.  You only took Gleevec for about half of the 50 days since diagnosis, which would not provide any meaningful progress.

 

OK, so we are where we are. 

 

Let me explain the PCR issue.  Your PCR did not change much even though your WBC dropped significantly.  The HU killed off most of the blood cells (good and bad), but after that you only took the Gleevec about half of the 50 days.  No surprise it looks like there was no progress since you had long drug breaks.  Even if the WBC is lower, the leukemic cell ratio is roughly the same in the reduced numbers of cells, so the PCR will be unchanged.  You did not take enough drug to alter the percentages of good and bad cells.  So from diagnosis until now your percentage of good and bad cells is about the same since you have not been on consistent Gleevec therapy.

 

Your Onc was also too quick to stop drug therapy due to low platelets. 

 

So now he is changing you to Sprycel.  That is neither good nor bad, so nothing wrong with the drug change. 

 

To sum up, you did not have Gleevec failure, you had Onc failure.  Maybe Gleevec would not have been the right drug, but no way to know.  So this is no issue for your future drug response either way.  You will experience continued low blood counts for a while, but do not let the Onc take you off the drug so soon for low counts.  Sometimes dose reduction is required, but do so only if required.  You WILL have low blood counts, so be prepared for that. 

 

There is nothing wrong with testing your siblings, but the BMT is unlikely.  Do not let the Onc push this issue.  Tell him to back off.  It is a last resort for CML patients.

 

Overall you still have a high probability of success on drug treatment.  If one fails, you just try the next one.  There are 5 good ones. 

 

Some day I will no longer need to write posts to CML patients who have been put on the HU roller coaster.  That day is not today. 

 

You will do well.

Edited by Trey, 27 June 2015 - 11:02 AM.

[Lucas]

hey sid, i was diagnosed 1y6mo ago and had a high wbc too (260K) and a huge spleen (16m below my costal margin and 25 cm in size). my doc also started me on Hydrea but it did not worked quickly and i changed to gleevec in 2 weeks. gleevec put my counts down quickly and my spleen got back to normal size between 1 1/2 -2 months (not that quick, but it returned). i still have low counts too. my platelets on gleevec were around 75-85K and my doctor always said not to stop medication. we'll only stop medication if my platelets were below 40K and my anc below 800. I also failed gleevec, but it was 8 months into therapy, than i changed to tasigna and it got me to complete cytogenetic response in only 3 months and with a good pcr. good luck on your journey. take care.

[CML2012]

I had been doing good with gleevec (just to let you know I was at 53% when diagnosed and dropped to 41% after 3 months of consistent gleevec). You have to be patient and give the drug a chance, your onc did not. I was down to 2% after 8 months then my numbers started climbing. My oncologist switched me to sprycel because the gleevec stopped working for me. Gleevec has the fewest side effects for most people. What you have to watch with sprycel is things with your heart.
The best advice on this board comes from TREY in my opinion. He is in Texas close to ANDERSON which is the best hospital for leukemia. Don't get me wrong, everyone else is great but personally Trey knows his stuff. I have done a lot of research and you have to find a good oncologist who is also a hematologist. Also just ask the doctor, how many CML patients they treat and if the treat anyone under the age of 50. You are rare and they will not know what to do with you.
I am in Charlotte NC. Where are you?
Good luck you will be fine!!!

[Jamie2015]

Hey sid,
Just read this and wanted to chime in on the low platelet counts. My platelets dropped to 50,000 and still my once wanted to push on with treatment. He said he wanted to give my body time to adjust...and it did just that. My platelets have been hovering around low-NORMAL! I am on Sprycel 100mg a day.