7 replies to this topic

[stephiericks]

My husband has his first appt with Dr. Cortes at MD Anderson this Monday.  He had a sub-optimal response to Gleevec and terrible reactions to Sprycel.  We want to be as prepared as we can for our time with him and were curious what questions you would ask if you were in our position - there might be something we hadn't thought of. 

As always, thank you for the valuable responses!

My best,

Stephanie

[Trey]

Dr Cortes will likely reduce Sprycel dosage, possibly after a short break. 

Questions:

1) Should he take a drug break? How long?

2) Should he lower dosage?  How much?

3) Should he try Tasigna?  (Note: Dr Cortes prefers Sprycel over Tasigna)

[scuba]

Stephanie - What reactions to Sprycel did your husband have?

[stephiericks]

He had severe chills and 103.5 fever - that was at the full dosage so possibly a lower amount would be a good fit

[scuba]

As Trey wrote earlier, Dr. Cortes will likely reduce Spyrcel dosage to see if that works. It's important to know as soon as possible if Sprycel is actually working and driving your husbands counts much lower. I don't know why Trey suggests Dr. Cortes prefers Sprycel over Tasigna, however (is there a quote from him somewhere?). When I first met Dr. Cortes he wanted to put me on Tasigna first. I was the one who told him I prefer Sprycel to try first. He was matter of fact about it. He does have a relationship with Novartis (Tasigna manufacturer) (research grants).

I was scheduled to meet Dr. Cortes on Tuesday this week during my PCR blood test, but I cancelled it because no point meeting with him until the test results are back (7-10 days) - and even then, I would only re-schedule if my results are not satisfactory (going in the wrong direction).

[pamsouth]

scuba wrote:
As Trey wrote earlier, Dr. Cortes will likely reduce Spyrcel dosage to see if that works. It's important to know as soon as possible if Sprycel is actually working and driving your husbands counts much lower. I don't know why Trey suggests Dr. Cortes prefers Sprycel over Tasigna, however (is there a quote from him somewhere?). When I first met Dr. Cortes he wanted to put me on Tasigna first. I was the one who told him I prefer Sprycel to try first. He was matter of fact about it. He does have a relationship with Novartis (Tasigna manufacturer) (research grants).
I was scheduled to meet Dr. Cortes on Tuesday this week during my PCR blood test, but I cancelled it because no point meeting with him until the test results are back (7-10 days) - and even then, I would only re-schedule if my results are not satisfactory (going in the wrong direction). 

Scuba, 

Regarding ""cancelled it because no point meeting with him until the test results are back (7-10 days) - and even then, I would only re-schedule if my results are not satisfactory (going in the wrong direction).""

Unless you live very far away.  Why is it that you go for an onc visit; onc give you a short check up, then you do your labs, and then either they call you or you call them, or the nurse calls you and says you need to schedule an appointment to talk to the onc about your labs. 

I have been on Gleevec since  2005 and that is the way it is always done.

I recently change oncologist, which is only about 15 miles from my house.  By accident I found out they my new oncologist does their labs and interprets them at the hospital connected to their office. 

Where my prev onc sent my labs from Indiana to N.J.  The lab in N.J. had changed over their metric calculations to IS and my labs were all over the place.  They had been PCRU for about 6 years, then all of sudden up to 40 % then 48 %, then dropped down to 12%.

Anyhow I just had my first labs with the new onc Feb 19, 2012, My next onc visit is scheduled for June next month.  I called the onc nurse and said I would like to schedule my labs 2 week, before my office visit.  Onc nurse said well you will have to make 2 visits then, 1 for your lab and 1 for your office visit with the doc.  I said yea but at least we will have something to discuss at the visit, because there are some issues we have going on. You could hear in her voice, she wasn't thrilled, about me having the labs done before my visit with the onc.  I asked her how long the labs were taking, because in Feb I didn't hear anything back so I called them about 2 weeks after the lab.  She said the LABS PCR/FISH used to take about 1 week, but for some reason that have been taking 2 weeks.  Anyhow I think I will see if I can have her mail the labs to me before my office appointment to see the onc. Isn't that the way it should be, I mean if you live close enough to do that.  Get your labs done and have them mail you the results, then have your office visit with the onc, instead of the other way around.

I always find your post; uplifting and intriguing, in a language I can understand

PamSouth

[GerryL]

Hi Pam,

I'm with Michael on having your results available when you see your specialist. Being rung by my specilaist at 8.30 on a Friday night with the reuslts of the BMB he did wasn't very helpful to me.

I now get my results ahead of time - I'll get them this Friday from my GP and then see my specialist later this month. This gives me a chance to reivew where I am - and hopefully this month discuss a dosage reduction (depending on my results).

[LivingWellWithCML]

I do the same thing ... I picked this up from Michael and Trey.  I get my bloodwork done 10 days before my appointment, so that the specialist will have all of the test results in hand when I see him.  Of course, I live about 25 minutes from the office, so it's easy enough to drive down to get blood drawn, then drive back for the appointment 10 days later.  Anyway, I've found that it's a much more productive appointment when they have FISH/PCR results...