17 replies to this topic

[DebDoodah22]

I am so excited... i switched ONCs to Dr. Cortes! My first appointment is Thursday. I am so hoping this will be a better experience and maybe i can become eligible for dose reduction and actually feel better. 3 years into this and feeling fatigued, neuropathy, hbp creeping up, shortness of breath...you all know the drill.

Ready for a little relief. If i cant get this under control, dont know how i will continue to work, which is a whole nuther chapter. Has anyone else switched oncs? Will i have to have another BMB? Nurse wouldnt say. Seems like all this testing and previous confirmation of Philadelphia + should be enough. Anybody have advice for new M D Anderson patients?

[Melanie]

Are you traveling to get to MDA or do you live in the area? I only ask because when I had my first appointment with Dr Cortes for a second opinion, I was traveling from Arizona and they suggested I make arrangements to stay for 3 days. It turned out, I only need two days and could probably have gotten everything done in one. If I remember correctly, I had labs done, then saw Dr Cortes, who already had been sent all my medical records. Following that appointment, they ordered a BMB and a bunch of other test. Plan on spending the day if these appointments aren't already set up. Dr Cortes likes all the test to come from MDA. I would suggest you have a list of questions for him that you want answered...it can all be a bit overwhelming when you're there. I actually recorded my first couple appointments because I couldn't always remember what was actually said. Best to you and know you're in good hands!

[scuba]

Dr. Cortes and the staff who support him are excellent. Melanie is quite correct in that they will want a new baseline set of data using their own lab and procedures. He'll note your history, but until he sees his own data (bmb, etc.) is not likely to prescribe a change. 

 

Also - you will meet many interns and other doctors in training who will review with you your individual situation. Be prepared for a lengthy set of interviews. Dr. Cortes will be the last person you will see along with his training staff.

 

You will be treated very well. 

 

(p.s. side note: do not eat in the M.D. Anderson facility (terrible food) - instead, walk across using the sky bridge to the cafe across the street. Food there is excellent)

[DebDoodah22]

I live within a couple of hours drive of Houston medical center. So, i have made plans to stay overnight preceeding the appointment, if onky to avoid driving in at the crack of dawn. I am excited AND a bit frightened at the prospect of another BMB. I hope they find my orior labs sufficient in that area. Thank you both.

[scuba]

Feel free to "tell" (as opposed to ask) him that you do not want to have another BMB. It's possible - even likely - he won't insist. It just depends on where you are in treatment status (I do not recall your PCR). I can tell you he focusses on cytogenetic data much more so than PCR which is why a BM is so important to him.

[kat73]

DebDoodah - I sense a kindred spirit, in wanting more info than we usually get "at home" from the "regular" oncologists.  I felt such elation and relief when I searched out Dr. Smith at Hopkins.  There was absolutely nothing wrong with the care I had gotten initially, but my guy was becoming a little vexed at my questions.  "We don't know; take the pill; you're doing great."  I didn't feel "great" and it was only adding to my anxiety to not know why, or whether it would always be this way, or worse.  I could build myself no concept of the future without some scientific reassurance.  Everyone is different, and that is just the way I am.  I actually had a dog to whom I had to explain any mission before he would move.  I could make him soldier on through heat or ice, but he had to know "why" FIRST.  And, for me, it isn't enough just to say, "because you'll die if you don't."  That just makes me sadder and more desperate.

 

I think you're going to be very renewed by going to Dr. Cortes.  Good for you for making the move.

[DebDoodah22]

Thanks kat73! That is fairly well how I feel.
And, Scuba - I am hopeful that my onc released all of the cytogenic data since all of my labs were done by Genoptix as part of a study that i never got to see. There should be plenty of data.

In June, I was at 0.0167 but it took an upward slope in September the extent of which i do not know... I only saw the graph. From the slope, i gather it is back around 0.0600. All i was told was that It is still below mmr. The onc wouldn't voluntarily show me the paperwork, I am not on his care Team. So, MDA here i come.

Thank you Scuba, for the advice, the info and your support of both me and the community.


DX 11-18-2013
Sprycel 100
PE
Break to every other day for a month then
Sprycel 70 for 6 month then
Sprycel 80 to present.

[tiredblood]

I am so excited... i switched ONCs to Dr. Cortes! My first appointment is Thursday. I am so hoping this will be a better experience and maybe i can become eligible for dose reduction and actually feel better. 3 years into this and feeling fatigued, neuropathy, hbp creeping up, shortness of breath...you all know the drill.

Ready for a little relief. If i cant get this under control, dont know how i will continue to work, which is a whole nuther chapter. Has anyone else switched oncs? Will i have to have another BMB? Nurse wouldnt say. Seems like all this testing and previous confirmation of Philadelphia + should be enough. Anybody have advice for new M D Anderson patients?

I'm excited for you for seeing Dr. Cortes. I'm also three years into this and do know the drill. Let us know how your visit goes.

[DebDoodah22]

UPDATE:
Sorry for the delay, work has been overwhelming.
GOOD NEWS on the CML front!
MDA did a thourough eval when I switched, including another dreaded BMB,which i was resisting.
Turns out Ph + is gone from bone marrow. My numbers BCR-ABL are very low and they reduced my Sprycel to 50!
This is giving me so much more energy and some relief from side effects and fatigue is abating.
Plus, I will get blood done every 3 mos. and see onc in 6.
Had cognitive eval and despite nay saying by previous onc and pcp, brain fog is real and treatable.
I am sooooooo grateful to Dr. Cortez and all of the team at MDA, they treat you with respect and really listen and follow up.
If my PCR continues to look good they will take me down to 20 in August.
I am feeling very good about the possibility of getting to the lowest possible dose and keeping these side effects down.
Who knows, might even qualify for stop out, after a few years. One can only hope.
Thank you all for your encouragement to try another onc. If i had not, i would not know about the good bone marrow levels.

[r06ue1]

Great news Deb and grats on the dosage reduction.  

[kat73]

DebDoodah - So happy for you that you have found a great place and doc and have had the good news!  May I ask what your PCR is now?  I'm curious to see how low somehow has to go in order for "them" to consider the reduction to 20 mg Sprycel.  I'm very confused as to when dose reduction is acceptable.  Do you always have to be Undetectable for two years or more first?  I would like to ask to go back to the very least amount of Sprycel I could take, when I restart after having had a pleural effusion. 

 

Also, how did/does your peripheral neuropathy present?  I have started to have inexplicable, intense itching bouts in my hands every few days, and now it has started in my feet.  It goes away after about 15 minutes and then I'm OK for a couple of days.  Is this peripheral neuropathy starting??!!?

[scuba]

Kat - If your PCR is below MMR (< 0.1%)  reducing your dose is fine. Dr. Cortes (my oncologist at M.D. Anderson) started me at 70 mg Sprycel which caused severe myelosuppression in me. Rather than reduce my dose gradually - he dropped me to 20mg immediately when I was restarted. He mentioned that he prefers to start low and work up if needed. This is not typical. In my case, I never had to increase my dose as my PCR kept dropping while on 20mg and has gone at or below detection. 

 

As you have had pleural effusion - it is highly recommended that you are on the lowest Sprycel dose that works. No need to take more if less will work. 

[M.A.]

That is great news Deb... so happy for you!

 

... what a sensible approach Dr Cortes takes... I wish he would formally publish his approach so that other specialists could learn about the 70mg starting dose for Sprycel and dose reductions once response milestones are reached. 

 

Kat, it's great to hear that your pleural effusion is resolving! Have you continued with diuretics, or started prednisone, or just stayed off the Sprycel to achieve this result? Many of us will encounter these effusions and it would be great to learn from your experience. Wishing you the best.

[kat73]

M.A. - Yes, I wish Dr. Cortes would publish it, too.  I know I'm going to have a fight on my hands when I go back.  My onc is going to push for the 50, if not more, in order to get me back on track.  But I'd be happy to take 20 and wait as long as it takes for the PCR to adjust and (hopefully) continue downward.  My onc is a big believer that underdosing causes resistance, so I have to tread carefully.  Scuba is the only one I know of who was given the go-ahead for that low a dose ahead of a 4 or 4.5 MR.

 

As to the pleural effusion, it was interesting that not only couldn't I find any definitive protocol for treating pleural effusion on Sprycel, neither my onc nor my PC really had any hard and fast approach either.  They, between them AND a pulmonologist, sort of shrugged and said, well, you can try THIS . . . But to answer you - the onc had me stay on the Lasix until the third chest x-ray which showed the pleural effusion was gone except for a very small sliver at the bottom, which my PC said would resorb on its own over several months.  In between, at my behest, we tried a short course of prednisone (10 days with tapering from 20 mg).  Nobody knows what you're "supposed" to do, beyond draining it (if deemed necessary) and/or waiting - Sprycel-less - until it goes away.  In my humble opinion the Lasix probably didn't do anything except annoy me with 14,575 trips to the bathroom.  The prednisone was very fun, but I doubt did much either.  I think it was stopping the Sprycel and time.

 

Scuba - Thanks for the info about Dr. Cortes saying anything under 0.1% IS can allow you to reduce dosage.  That really helps. Please tell him to get the word out to his colleagues!  The starting back low and slow seems to make very good sense to me.  I think if I had been started on Gleevec 200 mg all those years ago, I might still be on it and still have come out at the same place, CML-wise.  (But with no pleural effusions.)  About 3 times I was reduced down to 300 and felt better, then 200 and felt and looked much, much better.  But the onc (original one, not the one I have now) always pressed on and raised it back up to 400, where I just was devastatingly miserable.  And so on to Sprycel.

[M.A.]

Thanks Kat. I hope your return to Sprycel goes smoothly!

[scuba]

Kat - Keep in mind that Sprycel is 325 times* more potent than Gleevec in attacking bcr-abl cells. As such it's not comparable to Gleevec in terms of dose. In my own case, 400 mg of Gleevec was barely sufficient to check my CML. I had symptom relief, but that was it. My PCR and FISH counts stayed high even though my WBC came down. My first Oncologist suggested I move to 600 or even 800 mg of Gleevec. That's when I went for a second opinion with a specialist researcher - Dr. Cortes.

 

Dr. Cortes team mentioned to me years ago when Sprycel was first coming online as a first line therapy that they felt 100mg starting dose was way too high for patients given the toxicity profile and the fact that it is so potent in attacking CML (that matches the kinase domain for which Sprycel was designed to stop). They felt I should start on 70mg or less. When they saw that my WBC's still dropped dangerously low, they opted to drop me right away to only 20mg. and then only after 3 months of no treatment for my blood counts to return. 

 

When Sprycel works - it works great. And often low dose (in compariston with the recommended starting dose) is quite sufficient to arrest CML. 

 

So many patients could benefit from their oncologists lowering their Sprycel dose and still get excellent response while improving their patients quality of life (i.e. less P.E. and related issues). 

 

If my next cessation test fails - I will probably resume with 5 mg Sprycel and see if that is sufficient to keep me near PCRU.

 

* http://www.bloodjour...so-checked=true

[kat73]

They make it in 5 mg????!!!!?  How 'bout "imaginary Sprycel"?

[scuba]

It's special order. I would only be able to get it through M.D. Anderson directly.

But I would love to take 'imaginary Sprycel' and have the same response I have had so far.