19 replies to this topic

[jrb666]

I am a 54 year old female, recently diagnosed with CML. This is freaking me out because I've never felt better! I don't have any symptoms, other that a bout with night/day sweats, but I figure that was menopause related. My blood test results at an annual physical led me to hematologist/oncologist, and then to an expert for a second opinion.

 

My Doctor says it is in accelerated phase, based on the basophil%. He has suggested two options for treatment:

1. Clinical trial of Ponatinib as first line treatment
2. Tasigna

I'm so confused about which course to take. I've received financial clearance from my insurance company for the Ponatinib trial, and my insurance and Novartis should cover most of the cost of Tasigna. So money is not the big issue here.

 

I'm hearing great things about Ponatinib, but the possible side effects are terrifying. Of course, Tasigna has side effects too.

 

I would really like to delay my treatment for a couple of weeks as this is really messing with my vacation plans (and my life in general!) . I'm wondering how risky it is to delay treatment?

I guess I have to sleep on this.

[Sneezy12]

What is the basis for the diagnosis of the accelerated phase? i.e Lab results, BM, etc. Frank

[hannibellemo]

Hi, jrb666,

 

I'm so sorry you find yourself a member of this exclusive club, but you have come to the right place for support and answers to your questions.

 

Have you had a bone marrow aspiration and biopsy? You mention an elevated basophil %. What that from a blood draw? 

Did they mention blasts in your peripheral blood (blood draw) or bone marrow (if you had one done)?

 

If you haven't and your doctor is basing this solely on periperal blood I would get a second opinion and make sure to have a bone marrow biopsy and aspiration. This will tell the doctor so much more than just a blood draw.

 

If you could provide this information and any test results you've had, someone who knows way more than I do can certainly give you more information shortly.

 

Don't worry you do have time to make an educated decision.

 

Good luck!

[Trey]

If you are truly in accelerated phase, then delay is not a good idea.  Starting the drugs sooner is better.  And starting the drug should allow the vacation, even if scaled back only a wee bit.  The drugs may have some side effects (vary by individual) but they are not normally debilitating.  And if the clinical trial has time constraints, that would be something to consider in your drug treatment choice.

 

Either Tasigna or Ponatinib would be a reasonable choice.  There is no perfect answer, so the choice should not cause undue concern.  But if the drugs and testing are free in the clinical trial, and if that is a consideration for you, then those issues should be considered.

 

Regarding diagnosis in Accelerated Phase, that is not so scientific as it might seem.  There are various definitions, and not all medical communities agree.  The basophil percentage alone would not be enough to diagnose Accelerated Phase unless very high.  I would ask the Onc to outline the exact rationale.  And the drugs can usually bring someone back from Accelerated Phase into Chronic Phase, but only time will tell.  If your diagnosis has no other high risk factors except basophils, then either drug should work well for you. 

[jrb666]

Thank you so much for your quick responses. I have had a bone marrow aspiration and biopsy. My understanding is that the "accelerated" designation is based on the 24% basophils found in blood test. I'm not clear on why or if my bone marrow test results confirm that I am in accelerated phase.

I don't have a good feeling about the ponatinib trial. Every time I speak to the research nurse I feel panicked and confused. Part of that is my anxiety level, but part is how the nurse communicates. I don't think I can handle that for the next five years. And the side effects are disturbing. I want to feel cared for, not scared all the time.

[Trey]

Nothing wrong with choosing Tasigna.

 

24% basophils is not high enough to definitively diagnose Accelerated Phase if that is the only issue.  Or you might say it is a "low level" accelerated phase.  These things are only significant if the drugs do not work.  But I would not delay starting drug therapy if it were me.

[CallMeLucky]

Sorry you're in this boat. Ultimately the choices are yours but I assume you came here for opinions, so here it goes. If it were me, knowing what I know, I would not wait to start treatment, I would take Tasigna and I would get another opinion from a true cml expert to look at all test results and confirm phase. Do you know what your blast count was?
As far as the drug, I said I would go with Tasigna. It's been around longer, it's known to be a good drug that is based on the original TKI drug, Gleevec. Ponatinib has had a rocky start with some significant issues for some patients. Not that Tasigna is perfect but it seems the risks are higher with ponatinib. I would only take ponatinib as a third line treatment or if I had a know mutation that only ponatinib works on.

Best of luck.

[sullivas6]

Ask your doctor about the question of delay. I would not be surprised if he said take your vacation and we will start treatment afterwards. You may get multiple opinions on to delay or not. The choice is yours. Treatment is more than just drugs. I believe that you should consider your emotional (life interactions), spiritual and physical states in your treatment plans. For example, having the memories of a good vacation may give you a boost heading into treatment. 

[Sneezy12]

Do not delay treatment! Frank

[jrb666]

Thanks for replies.

The basophils in the bone marrow are 5%. The doctor said that as long as it is higher than 20% in blood or bone marrow, this constitutes accelerated phase.  Blasts in bone marrow are 4%, in peripheral blood they are 1%. This is my second opinion and the  doctor is an esteemed CML expert.

I told him I wanted to go with Tasigna rather than Ponatinib. There is a tasigna protocol (clinical trial) I can participate in,  or I can take tasigna "off protocol". The course of treatment is identical on or off protocol.

At this point I have not started treatment and I have not had a prescription filled. I'm not getting any great sense of urgency from the doctor or his team. In fact, I feel like I have to chase them down.  It's been a couple of weeks since my second opinion. I've never had anything close to a serious illness before,  so I don't know if this is normal. Obviously I am frantic, but I expected a little more direction from them. We have been communicating mostly by email (I live out of state, and I don't have a lot of privacy at work)

Does anyone have experience with clinical trials?  The drugs are free, but the associated tests must be paid by me or my insurance company. I'm told that I have "financial clearance", which means they will cover whatever tests they would have covered had I not been in a clinical trial. That sounds vague to me. I'm not sure if it's worth the hassle.

As far as my vacation goes, I'm scheduled to board a cruise ship on Sunday. This unfortunate turn of events has taken the wind out of my sails! It's highly unlikely I will have any Tasigna in hand before then, so I will pack my bags and try to have fun. Beats staying home and feeling sorry for myself.

[Ludwigh]

JRB,

 

Why was not Sprycel an option? 

 

I myself was diagnosed with 22% Basophil's and 8% Blasts. I was classified as borderline accelerated.

I was first put on gleevec immediately, even before all of the tests came back. Gleevec which worked well for about a year and then I started to loose response due to a mutation.  Went on to Sprycel. In less than a year I was PCRU (0.0000) BCR/ ABL where of which I have remained for 5 years (disease not detected) . Coming up on my 6th year anniversary of diagnosis.  

 

Maybe you should get another oncologist if they have not started you on a treatment yet. With high basophils you White blood cell and platelets must be up there as well. Mine were at 200,000 and 1.2 million respectively.

 

You must be your own care advocate. Use the LLS Forum, and Research, research, research.

 

Regards,

Terry

[Trey]

There is no good reason for delaying your prescription.  If it is due to needing a decision from you about a clinical trial or not, then you need to make that decision right away.  I would say that if it is not financially beneficial for you, then the main reason to participate is to help out with the research.  The trials always need volunteers, but if you are not nearby the clinical trial facility, then it would be a hassle and maybe not in your best interests since they are not very flexible.  Clinical trials also require a certain dosage, and maybe you would need more or less than that.  Otherwise this is just another choice to make with no apparent advantage either way for you personally, so just choose one right away.  If you want more information then post the clinical trial link for us to look at.  It would be one of these:

https://clinicaltria...y cml&recr=Open

 

The accelerated phase diagnosis is not very relevant as long as the drug works for you.  You could be called "low level accelerated phase" or not, but not a real issue otherwise.

 

So I would make the choice clear to your Onc and request (demand) the prescription right away, and go on your cruise while either the drug order or clinical trial paperwork is being processed.

Edited by Trey, 05 November 2014 - 09:52 AM.

[jrb666]

Great advice Trey. Thanks.

 

The trial is number 7 on the link you posted. My understanding is that the tests and follow ups would be identical on or off protocol.

 

Getting the Tasigna free of charge is not a huge issue. I have insurance and can afford the co-pays. Traveling to Houston from my home in South Florida is a bit of  a hassle, but I have family there that I want to spend time with, so I look forward to the trips.

 

I have the conception that I will get better care at MD Anderson than I will at home (Boca Raton, FL). Not sure if this is accurate or not. So far I have been underwhelmed.

 

I will be speaking to the research nurse today about the trial. Also getting some blood work done tomorrow morning to make sure nothing major has changed. Over the past few weeks my platlets have been roughly 1.1 million, but the white blood cells have only about 15,000. By tomorrow morning I expect to have all the info I need to make my decision. I will either have the onc order the prescription right away, or will go to Houston as soon as I return from my trip to start the trial. 

 

Thanks again for your input everyone. It really helps.

[Trey]

It is unusual to have only 15K WBC when diagnosed.  The high platelets are often an early sign of CML, and you should ask your doc about taking aspirin daily or something to counter the potential negative effects of high platelets.  At a minimum I would stay very well hydrated.  So it appears that your trip is a reasonable idea except for watching the platelet issue.  Your blood is somewhat "thicker" so watch for any signs of light-headedness or other symptoms.

 

I assume you had a bone marrow biopsy (BMB).  You should get a copy of that and all lab reports.  Your BMB may have shown a rather low level of leukemic cells with only 15K WBC.  It is especially odd to be diagnosed in accelerated phase with a WBC so low.  Most of us were diagnosed in chronic phase with a WBC over 100K. 

MDA would be a good choice for care.  You should just be certain you can travel as often as they require for the trial, so understand that issue well. 

[JPD]

I was 363 WBC at dx... and I know there is someone on here that was dx with over 400.  I wonder what the highest has been?

[jrb666]

Trey -

which elements in my BMW indicate the level of leukemia cells?

What is the benefit of staying well hydrated?

I had a CBC this morning and everything was fairly stable. I will get another blood test after I return from my cruise, and start the trial shortly thereafter.

[Trey]

The BMB report should state that X out of 20 cells showed t(9;22) translocation, or maybe in percentage terms that X% showed t(9;22) or other language indicating the number or percentage which were leukemic.  Most of us at diagnosis showed 100% leukemic cells or close to it on the BMB.  From your information I would assume it might be a smaller number/percentage.

 

With the high platelets making the blood thicker it would be wise to keep the blood thinned out, either by aspirin or simply over-hydration.  When I had 1 million platelet count the Onc required an IV bag to hydrate me, which ticked me off because it had a dang pump which kept me awake all night.  I thought it was not necessary, but it is not a trivial issue to have a 1 million PLT count.

 

Cruise ships are a floating petri dish.  Wash hands constantly.  Your body can still handle the germs but anyone can get sick on a ship.  Did you get a flu shot yet??? 

[jrb666]

I was told that all 20 cells tested were Ph+.  The BCR-ABL % was roughly 35.

 

I have copies of the cytogenetic test results, but I might as well be reading hieroglyphics. I don't know if it's appropriate to cut and paste portions of the results on a forum such as this.   

 

I have had a flu shot and, since my diagnosis, I take a low dosage aspirin every day. I drink lots of water. I exercise and eat right. Get plenty of sleep. Have a physical every year...blah blah blah. I am downright smug about how conscientous I am. Life is full of suprises!!!

 

 My regular doc suggested that I talk to the oncologist about the pneumonia vaccine.          
 

[Trey]

You are doing the right things.  Many of us lived a healthy lifestyle until this thing came along.

 

If you want to paste in portions of the BMB (cytogenetics) report, most of it is standard verbiage, but the important part is usually only the 20 cells discussion paragraph which should also discuss "cell morphology".

 

Enjoy the cruise, then get started with Tasigna as soon as possible.

[patcanfield]

I am a 54 year old female, recently diagnosed with CML. This is freaking me out because I've never felt better! I don't have any symptoms, other that a bout with night/day sweats, but I figure that was menopause related. My blood test results at an annual physical led me to hematologist/oncologist, and then to an expert for a second opinion.

 

My Doctor says it is in accelerated phase, based on the basophil%. He has suggested two options for treatment:

1. Clinical trial of Ponatinib as first line treatment
2. Tasigna

I'm so confused about which course to take. I've received financial clearance from my insurance company for the Ponatinib trial, and my insurance and Novartis should cover most of the cost of Tasigna. So money is not the big issue here.

 

I'm hearing great things about Ponatinib, but the possible side effects are terrifying. Of course, Tasigna has side effects too.

 

I would really like to delay my treatment for a couple of weeks as this is really messing with my vacation plans (and my life in general!) . I'm wondering how risky it is to delay treatment?

I guess I have to sleep on this.

If money is no problem why not go ahead and take the Tasigna and give someone else the spot on the clinical trial that money is a problem with them.