14 replies to this topic

[Coloratura]

Hi there...I wrote my story down in another place. Pat gave me a link to the CML crew...

All this is pretty new to me,and just glad to find others out there who can relate.

To make my long story short...am 33, wife and mother of 4 children, newly diagnosed, taking Sprycel, have a blood clot in my lung (found that out 4 days after I was diagnosed)...

I am going to a new doctor and he is referring me out to MD Anderson. My new doc thinks I should consider a bone marrow transplant, otherwise be on the chemo drug for the rest of my life...

Not quite sure what to do....taking one day at a time. Still feels like I am in a crazy dream....i was not very emotional when they told me my diagnosis...just feel like a guinea pig.

Anyone else with CML who has had a BMT? Who takes Sprycel? Anyone else with a blood clot too? Not sure how to deal with all of this...i am on a blood thinner as well, and have to keep taking it for about 3-6 months. Do I go to my PCP for the blood clot and the Onc for the CML?

I got some of my test results back and it all looks Greek to me....what the heck are PMN neutrophils? What if I feel like I have been misdiagnosed....how can you tell for sure if you have CML? Is it the PH+ chromosome? Or could you have sometihng else?

I know...lots of questions....

Thanks and blessings to all,

Coloratura

[mariebow]

you have came  to the right place. there are many knowledgable people here, who will get around to answering your questions. I was diagnosed in January of this year, and was shocked when the diagnosis of leukemia kicked into my brain. I have been on tasigna for about four months, 58 and a mother of four children and four grandchildren.  Again you came to the right place.

[Johnc]

Dear Coloratura

You are absolutely in the right place. My prayers for your strength goes out to you and your 4 children. One way besides posting which is a great tool of this website is to do searches on key words within the site. It does a great job of narrowing the information you are loooking for. In addition there are so many caring folks on this site and some resident experts too.Please see the website below which encompasses many questions on CML

http://treyscml.blogspot.com/

Good luck and please post as often as you want as we are ALL in this together,

God Bless,

Johnc

[robertmeador]

Hi  Coloratura,

I had AML m3 (which they call APL) and one of the symptoms that could develop were blood clots.  I had a 2 foot clot in my right leg.  It swelled up to almost twice the size.  They did  a CT-Scan  and a procedure (can't remember the name) that they feed a tube down into my lungs and looked for whatever.  They found a few things that were removed and then they sprayed water on areas as to clean the spots so they could see more clearly.  The procedure is very easy to tolerate, I know they sedate you.  Because I also had intracranial bleeding at the same time they could not treat the clotting with blood thinners at the time, so they inserted a filter in the main vein in my stomach to catch any clot that would break off. (Isn't technology great?)  Later, I had to take Lovenox shots twice a day for about 11 months.  11 months is not normal, I was on it TOO long.  The filter was also in TOO long.  It was actually removed yesterday, when on the 3rd attempt to remove it, were they successful.  They tried 2 different tools to remove it and couldn't attach to it, then while I'm on the operating table (they gave me more sedative and I didn't care if they used a back hoe to pick it out) someone went over to a neighboring hospital to get a 3rd tool and they were able to get it out.

They probably told you that your body will grow new veins around the clots (if they are in you legs or arms) and eventually the flow will be restored. That will take about 6 months.

To answer your question "Do I go to my PCP for the blood clot and the Onc for the CML?"   Ask both to talk about it.  My ONC was calling the shots in the begining, but my PCP got involved later.  They both have to be on the same page, thats why I say have them both talk about it.  Stay on them if you think something is not right.  Remember this is about  YOU, YOU, & YOU.

I wish you well, explore this website and you'll find out how others deal with issues. 

[CallMeLucky]

It is good you are going to MD Anderson.  It really depends on what stage your at with CML and if you have any high risk factors.  Assuming you are in chronic phase, which most people are diagnosed in, then I would say any doctor who suggests having a bone marrow transplant just so you don't have to take TKI drugs for the rest of your life is a complete imbecile.

A bone marrow transplant is a very big deal and for a CML patient it should be the last treatment option after all other options have been exhausted.  A transplant should also not be considered without a second opinion from a CML expert.  There are many treatment options for CML patients and the prognosis for most of us is that we will live a normal life span usually having to take only one pill a day.

I get so annoyed when I hear doctors through out transplant as if it were the same thing as having your appendix taken out.  Did your doctor happen to mention that after the transplant you would have to take immune suppressing drugs, possibly for the rest of your life?  Drugs with harsher side effects than the TKI drugs you would take for CML.

Go to MD Ansderson and see a CML specialist.  If you need a transplant because you are in an advanced stage or TKI drugs are not working for you then so be it, you will do it and you can survive it.  But if there is not an overwhelmingly good reason why you need BMT then it would be crazy to have one just to avoid taking TKI drugs.  Your doctor should have also mentioned to you that many BMT protocols for CML now suggest that post transplant the patient go on TKI drug to increase the odds the patient won't relapse.  All in all very bad advice from your doctor unless you are in an advanced stage of the disease.

[jrsboo]

I double and triple what Lucky said.

BMT is a last resort treatment, not a first line treatment. (assuming that you are in the chronic phase).

Caroline

[Trey]

Our CML drugs (Gleevec, Tasgna, Sprycel) are NOT chemo drugs.  If they were, your Onc might have a point.  But since they are not, your Onc has no point unless you have some high risk factors.  Ask the Onc if you have any high risk factors, and if you were diagnosed in advanced stages of the disease. 

If your Onc is a Hematologist then he should be able to deal with the blood clots. 

[Marnie]

Hi, Color. . .

Sorry that you have to join this club.  What Lucky says is true.  From your description, your onc sounds a bit questionable.  Fortunately, if you are going to MD Anderson, you will meet with an oncologist who knows a lot about CML and who will give you good advice on treatment.  I'm on 100 mg of Sprycel and have had very few side effects.  I started on Gleevec and had suboptimal response.  As the others have said, unless you are in advanced stage, you shouldn't even be considering BMT at this point. 

Take a deep breath, try to relax a bit, and learn what you can about CML.  Be careful about reading old information.  The disease is no longer the death sentence that it used to be.  There are many people on this board who have gotten their lives back after a diagnosis of CML.  You will too. 

This is the place to ask questions.  Lots of friendly people who know what you're going through because they've been there. 

Best,

Marnie

[Coloratura]

Thank you all for your support and words of advice. I am hoping I get more answers from the docs at MD Anderson. Just waiting for the phone call.....

I have been reading and researching and trying to decipher it all. I definitely do not want to jump into anything blindly, especially if it can potentially be the worst thing for me.

God bless, Coloratura

[NotJack?]

Hi Coloratura,

Just wanted to second Johnc's endorsement of Trey's blog.  One of the points that he brings up is:  

QUESTIONS FOR ONC

At diagnosis it is important to know several things: 1) Do I have CML? (How was it diagnosed -- a BMB should show the Philadelphia Chromosome) 2) Do I have any high risk factors? 3) What CML Phase am I in (Chronic, Accelerated, or Blast Phase)? 4) Was a PCR done at diagnosis? What was the result? 5) When will I start drug therapy, and what drug(s) will I take, and what dosages?

For follow-up appointments, always go to an appointment with a written list of questions. At a minimum I would ensure that the following issues are discussed at every visit:
1) What do my test results show? What is out of range, if anything, even if you do not think it is important? What does each one mean? 2) What tests are being ordered this time? (should normally be a CBC, CMP Panel, and PCR or FISH) 3) Am I making good progress relative to your expectations? 4) What is my treatment plan for the future? 5) Always get copies of all lab reports before leaving

I get some of my stuff done prior to going to my CML specialist (including BMB and FISH or PCR).  These generally take a while to get results from, and it is nice to have all of the results at your meeting.   The bloodwork they do on site, as it is back in an hour.

Hope that all goes well,  Jack

[kimw]

Hi Trey,

I am new to this board.  Just diagnosed 03/08/12 and was put on Tasigna 300 mg twice a day.  My question is why you say it is not a chemo drug.  My Dr. (Oncologist/Hematoligist) tells me it is and the bag that it comes in when shipped from the pharmacy clearly says "Caution" "Chemotherapy Drug" all over it. 

I do agree with BMT as last resort based on all that I have read about this disease and treatments.  I greatly appreciate all the info that you have posted.  It has helped me a lot.  I am just trying to learn my way through what life has dealt me this year. 

Thanks,

Kim

[Sneezy12]

Read the old Posts regarding this.

[Trey]

Kim,

Sneezy did not mean to act like the other dwarf Grumpy.  It's just that Snow White had him mow the hay. 

Here is the info he suggested you read:

http://community.lls...ki chemo druker

[kimw]

Sneezy,

I am sorry.  I am very new to this illness and to this board.  I am still figuring out how to navigate through it all.  There is so much to read and so many different threads that it will take me awhile to go through them all.  Please bear with me if I ask questions that have already been answered.  I am still in disbelief that I even have this disease and my Dr. doesn't give a shit about emotional support that it why I came here.

Kim

[jrsboo]

Dear Kim,

Never be afraid to ask questions!!!  Knowledge is power, and it is the only thing that will make this "nightmare" any easier.  It is hard to hear people's "voice" in emails and online, perhaps his terseness wasn't intended, and if it was, feh on him!

The chemo v. targeted drug therapy debate is a hot issue on this board.  By technically calling it "chemo" it forces the insurance companies to pick up more of the bill than if it were only technically a "drug therapy".  For some, perhaps the idea of taking "chemo" for life is hard emotionally, so they don't like the name. 

As Shakespeare said, "A rose by any other name would smell as sweet."   What matters is what something  IS, not what it is called.  And the TKI's are life savers.   Comes in three, maybe four flavors (tee hee--I made a funny).

DISCLAIMER:  Nothing I have said is intended to irritate or annoy anyone.  I respect each person's choice to call it what ever they want, so long as it is a "chemo" drug and my insurance company continues to make the bulk of the payments.

Caroline