33 replies to this topic

[fola]

Does anyone know of any CML doc/specialists who are willing to work with patients regarding taking less-than-standard dosages of TKIs?  The only one I know of is Dr. Cortes.  My doctor isn't too keen on the idea and will not recommend it.  Due to side effects, I'm on a TKI break, but when I have to start again, I'd like to have a list of docs I can contact who look favorably on lower-dose dosing. Thanks all.

[scuba]

Fola - Have your doctor contact Dr. Cortes and ask him about your case. Perhaps your current doctor needs "cover" from one of the researchers who has had very good success modifying dose on a case by case basis.

(My first Oncologist who diagnosed me with CML did not want to reduce my dose no matter what. He would only interrupt treatment and then want to re-start at the same dose. After I visited Dr. Cortes who changed my dose downward, my first Oncologist went along with it straight away telling me that Cortes is an expert and he will follow his recommendations. I haven't seen my first Oncologist in over a year and frankly don't know if I will ever need to visit with him again. His office pharmacy does provide my low dose Sprycel and they use either of my two Onc's for the recurring prescription. It's nice to have back-up, but Dr. Cortes calls the shots. ... Acutally - I call the shots and then listen if Dr. Cortes disagrees. Only when I wanted to increase my dose did he say, "no - don't do that".)

[threedprof]

After 5 years of stable PCRU tests Dr. Druker gave me his blessing to reduce to 200mg then trying to come off of Gleevec, completely.

[scuba]

3Dprof wrote, "After 5 years of stable PCRU tests Dr. Druker gave me his blessing to reduce to 200mg then trying to come off of Gleevec, completely."

Hey - Susan - read 3Dprof's note above! Dr. Druker is suggesting that patients who have been PCRU a very long time LIKE YOU should consider 'come off Gleevec, completely'. Something to think about - eh?  Sooner or later I suspect Trey is going to give this a try. He's too curious not to test the theory that he might be free of the disease. What about it Trey? Do you at least think about stopping therapy?

[CallMeLucky]

My doctor was avidly against it.  For low counts it seems there is flexibility, for quality of life side effects the doctor's seem much less willing.

[fola]

My doc sounds just like your first onc.  I'm going to request that she contact him.  Thanks Scuba.

[fola]

It's very frustrating.  I feel lost.  My onc's convinced that most docs will not allow for a dose reduction, even with my severe adverse effects.  Only option is to switch drugs with no dose reduction. 

We'll see.  If my onc's remains resistant, I'll have to search for a new doc within my insurance network.  Yikes. 

[fola]

That's great news.  It's always nice to hear stories of CMlers who may not have to be on TKIs for life.

[fola]

Hi Scuba,

Is this the correct contact information for Dr. Cortes?  I want to pass it on to my onc. Thanks.

Dr. Jorge Cortes MD (MD Anderson)

1515 Holcombe Boulevard

Houston, TX 77030

Phone:

(713) 792-2121

[CallMeLucky]

What are your side effects?

[scuba]

Fola - Yes that is his address. Also - his e-mail is: jcortes@mdanderson.org

Your Onc' might have easier access by e-mailing him. He is very good at responding to e-mail if he is in town (in the Clinic).

[fola]

Hi Lucky,

I've been on 400mg of Gleevec for 2.5 years and it appears that it has disrupted my ovarian function.  So much so that my last endocrine counts look like its pushing me into premature ovarian failure.  Since I'm still young, we're trying to figure out the best course of action.  The problem is, there is suspicion that ovarian disfunction is being caused by the blocking of cKit and/or PGFH.  Since all the current drugs on the market block these, I'm trying to figure out the best way to manage my case.  Right now I'm on a drug break to see if the "damage" is reversible.  Dr. Druker and Dr. Mauro recently co-authored a paper showing that G does disrupt ovarian function.  The question is whether its permanent and what to do with patients regarding quality of life.  I.e. bone loss, heart disease, infertility, increase risks of other cancers, etc.

My doc seems to think its reversible, the only drug (that I'm aware of) that may not cause this problem is bosutinib (i.e. no blocking of cKit or PGFH).  However, its not on the market and that's just wild hope and speculation on my part. 

I wrote more about this in another post if you're interested in reading: http://community.lls...e/141089#141089

[fola]

Thanks! 

[CallMeLucky]

Gee, I'm sorry to hear about this, that is certainly not as common and I can understand why you are looking for different options.  I hope you figure something out.  Do you know if ponatinib blocks cKit or PGFH?  They just announced an expanded access program to ponatinib for those who need it.  Not sure if your circumstances would qualify you  but if it doesn't block those it may be worth inquiring.  I posted the contact info for the expanded program in another thread earlier this week.  Best of luck.....

[fola]

Unfortunately Ponatinib does block PDGFH and cKit.  I'm just hoping that since ovarian disruption is a side effect, reduced dosage may translate to less ovarian disruption.  I also don't think its very rare in my demographic.  Most younger women complain of increased hormonal/menstrual issues on TKIs.  It's just that most of us (especially if we're on the younger side) don't think to ask for regular testing of our reproductive endorcrine hormones.  At one point I asked for the test and was told that I was too young and it wasn't necessary.  I had to insist.  Other women may not be as bad off as I am, but I still think its a good idea to monitor the effects of these drugs on our endocrine system.  It also appears to cause hormonal disruption in men as well.  This may be the reason for some of our more annoying side effects.  However, this is just anecdata on my part.

Thanks for the well wishes.

[mariebow]

My doc cut my dose in half, because I was having moderate bone and muscle pain. He told me that other doctors was also cutting their patients down.  and since my wbc has already returned to normal, he is keeping me a this dose.

[pamsouth]

Scuba,

Thanks for all the info on Dr. Cortes and the lower dosage.  I have his email, address and phone number.  Thank God I am getting together a back up plan, that gives me HOPE!! 

I was just wondering if I understood you correctly.  Dr. Cortes calls the shots.  Your local Onc writes the prescriptions and does your blood work.  Do you not also have quarterly visit to your local oncologist?

I think you are absolutely right about the cover.  " Perhaps your current doctor needs "cover" from one of the researchers who has had very good success modifying dose on a case by case basis.""

Thanks Pam

[scuba]

Pam,

I haven't seen my primary Oncologist in over a year. And since I stabilized, I haven't visited them for blood work (CBC) either. I decided to go to M.D. Anderson every 3 months so my lab results are consistent. My primary Oncologist has no problem with that and is fine with watching over Dr. Cortes' shoulder. I didn't really give him a choice. I listened to the two Drs. approach and decided to go with the one that made sense to me. My primary Oncologist wanted to follow the Gleevec guidelines religously. Dr. Cortes was flexible and willing to experiment and customize. I like customization.

The next time I expect to see Dr. Cortes will probably be next year after my bone marrow is done.

One other point that all of you should consider. Ask your Oncologist if they go to ASH every year? If they say no - make sure you confer with an Oncologist that does. My first Oncologist did not attend ASH. Dr. Cortes, not only attends ASH, he presents original research at the Conference. That was enough for me to initiate the switch-over.

[pamsouth]

Scuba,

Regarding:

"The next time I expect to see Dr. Cortes will probably be next year after my bone marrow is done."

So how often do you have bone marrow?

You go to MdAnderson every 3 months for labs only, you don't see Dr. Cortes? 

So they mail you your labs to you.

You only see your local oncologist once a year?

PamS

[mariebow]

I gave my little two cents on your post and realized, I am a newbie and I need to let the more experienced and seasoned comment on this. but you got to give me a A or B for trying. lol