Just got back from seeing my onc. He was very unhappy with my latest PCR results. Upping the Sprycel to 140 mg. If that doesn't work, he's sending me to MD Anderson. I wasn't depressed before, but now I am.
Can I use that other expletive now, Phil??
Posted 07 July 2011 - 03:44 PM
Oh Marnie, use all the words you've got, creatively! This sounds like a good time to vent and express yourself. Yikes!
I did a quick look to see if you've had a mutations test done yet, but gave up (you are a great asset to this board!). Have you and your onc done test to check for mutations? I expect you've done everything, but just asking.
When will you do your next PCR after upping the Sprycel dosage?
Hang in there, kid.
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 07 July 2011 - 03:47 PM
You're allowed any expletive you want, but in your position I'd be looking for a second opinion from his Treyness before getting too upset - and probably before agreeing to a dose escalation. Is your lab on international scale? If so then you still have better than 4 log reduction and given you weren't PCRU last time I'm guessing that the increase in your results is pretty damn tiny - well down in the white noise level. Dose escalation just to try and get PCRU doesn't seem a sensible idea to me when you weigh the increased risk of side effects against the absence of real benefit. Unless you're planning to stop drugs and have kids!
Posted 07 July 2011 - 03:53 PM
I agree with Phil. I was thinking the same thing when I read your post. Obviously I am not a doctor and can't tell you what is best. Your doctor, hopefully, has a good reason for wanting to up your dosage other than the fact he would like to see a zero on your test results. I can only speak to the conversations I had with my doctor and my impression is that she would not increase my dosage or switch my drug if I remained in MMR.
I wish you the best and I'm sorry you have this additional stress.
Posted 07 July 2011 - 04:14 PM
No kids in my future. We have a cat, and it's great to leave him at home with food and a litter box on the weekends. Can't do that with kids (I don't think). Also, after 25 years of teaching. . .there are absolutely no names that I could use!
I did have a mutation test done awhile back, and came up with just one of the little minor ones, so no worries there.
My doc definitely is focused on getting to zero, and not so much on log reductions. I'll start 140 mg as soon as my insurance will let me order it (2 weeks), then see him 2 weeks later to see how well I'm tolerating it. Then a month on it before doing a PCR test.
Here's the entertaining part: I stopped by the admin building at my school district BEFORE going to my appointment. Did the paperwork to change insurance companies. School district going to high-deductibe/HSA plan. Two to choose from. The one I'm currently on has a $5000 deductible. So I filled out the paperwork to switch to the lower $4000 deductible carrier, as that out-of-pocket hit is going to come in September as soon as I have to order Sprycel. Now, after seeing my doc, I'll have to go back to admin to switch back, because there is NO WAY the lower deductible plan will let me go out of state in the case of going to MD Anderson.
Up until now I think I've dealt with all of this pretty well, but I want to get off this stinking merry-go-round.
I did mean to ask if the lab was on international scale. . .but I forgot. I've been assuming it is. But I still am not really clear on how to calculate log reductions. I had assumed that when I got to .002 that was still only a 2-log reduction, since I started at .2. Sorry. . .elementary and middle school math don't get into this much detail and it's been a long time since college calc. A long, long time.
AND. . .darn it. . .much as I would like to start drinking, I have a headache from drinking too much yesterday. . .the bottle of bubbly doesn't even look appealing. Crap!
O.k. I'm done whining. Oh. . .not quite. . .tonight is the "celebration dinner" with both of the contract negotiations teams. I have to go and play nice with them, pretending that I'm really happy with the new insurance plan, the pay cut, and the 4 furlough days. Grrr.
Posted 07 July 2011 - 04:35 PM
Was that initial 0.2 at diagnosis or after you'd been on Gleevec a while (sorry, the old memory is not what it was and I don't have Trey's filing system!). You can calculate log reductions either from your personal pre-treatment score or against the lab's 'average' newly dx level. Your personal one may be better in terms of trends early on, but as all the studies seem to be based on reductions vs lab average that's probably the better one to look at in terms of your absolute level.
On IS 100% is the base line so 0.1% is MMR / 3 log and 0.01% is 4 log. Do you have a copy of your results? Many labs now seem to be putting an IS equivalent and / or log reduction figure on the test if they aren't already reporting in IS
Hope the evening isn't too dreadful and the headache improves.
Posted 07 July 2011 - 04:55 PM
Started Gleevec 6/19/2009.
PCR of .2 on 9/17/2009
So, based on that, I guess my results are even better than I've been thinking, since the .2 was three months after being diagnosed. In looking at my original BMB, maybe the number I should be using to calculate log reduction is 41.65%. Hmmm.
My PCR lab reports, I think, are pretty pathetic compared to those that some of you receive. Mine just don't seem to have a whole lot of information. They give a BCR/ABL ratio and they give the fusion number, which is the number I've been tracking.
Posted 07 July 2011 - 08:24 PM
Your Onc said what about a .008 PCR??? It (fill in expletive here) me off when (fill in expletive here) Oncs say things that cause the (fill in expletive here) patient to believe they are somehow (fill in expletive here) up when they are really doing just (fill in expletive here) fine, thank you very (fill in expletive here) much.
Tell your Onc that Sprycel is just another med and not a (fill in expletive here) miracle in a bottle. You will get to zero soon enough, but your (fill in expletive here) Onc is already a (fill in expletive here) (fill in expletive here) (fill in expletive here) zero.
Posted 07 July 2011 - 09:27 PM
Is this the part where Phil holds your coat so you can slap the onc?
Posted 07 July 2011 - 10:23 PM
Well, I feel (fill in expletive here) better now!! You guys are not only informative, but funny, too. . .
Posted 08 July 2011 - 06:20 AM
I got to say, an eight with three zeros and a decimal point in front of it sounds pretty good to me! PCRU, IMHO, should not be anyone's goal and certainly not a doctor's goal. It's icing on the cake if you get there but very few of us do and it will be a while before they know if Sprycel or Tasigna or any of the new upcoming drugs changes that.
Plus, 35% of people on 140mg. experience pleural effusion - wouldn't it be lovely to have to be taken off Sprycel completely because of that?
Please, let me be the one to hold your coat...!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 08 July 2011 - 06:24 AM
I'll be the one getting the onc to bend over and drop his trousers to give Marnie somewhere to park her motorbike.
Posted 08 July 2011 - 08:37 AM
What?!?!? You can't leave your kids home alone with some biscuits and a litter box? I learn something new very day...especially since I was told recently I should take my Sprycel orally. My lab, (still not sure if it is on the IS either, no one can tell me----but prob. not) will graph my PCR values over time. You might ask the lab if they will do this for you. It helps to have a visual to see what the log reductions are. Who ever would think that subtracting by 100s would be so mind-boggling?
The margin of error with PCR machines being 1/2 to 1 log makes things very difficult. I have even heard it reported as 1/3. So, what should an onc make of that? And what is a significant increase compared to your last value? Very confusing. I am sure it can be just as ambiguous for an onc. And I am not confident all onc's judgement calls are accurate. Especially if an onc is very rigid (and somewhat less intelligent) and take the numbers at face value only.
I hope the 140mg works well for you and you do not experience any increased side-effects. But it would be nice to learn that you are fine at 100mg. I really believe there are some oncs that are stuck on reaching PCRU as a goal for every patient. Although, it appears this is waaaay unrealistic. .002 seems very low despite not being a 3 log from dx. As long as you are still around there and the increases you have had are within your test's margin of error consistently, I am not sure there is call for alarm (MD Anderson). Wish I understood more. However, none of us want to see numbers rise. But I am beginning to think it is par for the course when your numbers have a couple zeros in front. Now, at my level, if I get a higher number, it may be more significant. I want some zeros!!!!!
Sorry about the insurance woes. Who needs this on top of rising PCR numbers? When the sh-- hits the fan, it really blows it around.
I wish you all the best,
P.S. When drinking fails, there is always Xanax. I think it is an excellent drug for all of us CMLers to have around the house.
Posted 08 July 2011 - 08:46 AM
Ooops, a little late in my reply. But I concur. The onc should bend over and give you an aboral parking space for your bike.
Posted 08 July 2011 - 09:51 AM
Actually only 2 zeros, Pat, but who's counting (oh yeah, we all are!!).
Now I'm kicking myself for having the same knee-jerk reaction that my onc apparently did. I'm taking the weekend to mull things over, do a little research, and then next week make some decisions. Dang! It's really frustrating to know that I trust a bunch of on-line people that I've never met face to face more than I trust a trained oncologist. Something just isn't right about that! That said, thank the good lord that this on-line community is here! Otherwise we'd all be groping around in the dark like so many of the docs seem to be doing. I feel like I should send my co-pay out to a few people. . .
I hadn't considered the pleural effusion aspect of upping the dosage Definitely do NOT want to go there. Where did you get your 35% statistic?
Now it's time to start packing for the weekend. Heading up to Wyoming on the big bikes for a weekend of camping with the BMW club. Also need to assist in the garage while the husband puts new shocks on the truck. Problem is, whenever I'm assisting with mechanical stuff, I get bored or distracted and wander off to weed my flower gardens. That does not go over well with the head mechanic.
Posted 08 July 2011 - 10:20 AM
I'm sure you already know this, but to clarify for everyone, I think the key is not to take what you get online as replacement for what your doctor tells you. Your doctor is a trained professional, some are better than others and there are a few bad ones, but for the most part they know a lot more about your case than we do and may have good reasons for the decisions they make. I find that doctors often have a good reason, the real deficit is in the ability (or lack of desire) to explain their reasons. You have to take what you get online back to your doctor to have a more informed conversation. Ultimately you are in charge of your care, but you do have to trust the professional as well. Sometimes I don't like what my doctor says (sometimes it contradicts what I hear on the forum) but then I remember that I put a lot of thought into choosing my doctor and I trust her. She is the expert and knows more about this then I ever will. She also knows the specifics of my case. So when push comes to shove I defer to her position. That doesn't mean I don't challenge her and once in a while she gives in on something I want. So the key is to make sure you trust your doctor. If you don't then that is going to make things complicated. Assuming you trust them, then you need to have the conversations with them to get comfortable with what they want to do and/or negotiate the treatment plan (i.e. "I understand you want to increase my dosage, but I am not comfortable with that at this point. Why do you feel it is necessary to do it immediately? What is the harm in waiting a little bit and see what the next set of test results show? If you don't want to wait 3mo, what about testing again in 1mo? My understanding is that PCR tests can fluctuate quite a bit. What about my case makes you think this is nothing more than normal variance in the test and wouldn't it be prudent to wait for another test to establish a trend rather than increase dosage and risk more sever side effects like a pleural effusion?)
At that point he should have a really good reason to increase you or agree to wait for another test. If he has a good reason, then you should heed his advice or go get that second opinion. If he doesn't have a good reason, then it probably makes sense to wait for another test and see if there is a trend.
Posted 08 July 2011 - 10:49 AM
Lucky has a lot of valid points, and as a general principle trusting what your doctor says versus what some random person on a chatroom says is normally the way to go (I certainly wouldn't advise anyone to trust me). The one thing that does have to be borne in mind though, is that CML is a rare disease and many doctors, for all that they are trained professionals, have an incredibly limited knowledge of the disease and its treatment. We have seen far too many of them fail the DTTMOIAM test by giving advice that is unwise or even plain dangerous to their patients not to know that blind faith is not always the best option.
As Lucky says, at the end of the day you have to take charge. I always like the bacon and eggs analogy. As the chicken, your onc has a definite interest in the dish. As the pig you are wholly committed.
Posted 08 July 2011 - 10:58 AM
And THAT, Lucky. . is the question I'm wrestling with right now. Do I trust my onc? I'm not so sure any more. He does respond well to e-mails, so after I've had some time to digest everything (and your comments and questions to pose to the doc are very good ones), I'll shoot off an e-mail to him and see how he responds. I wish I didn't have the darned insurance deadline hanging over my head. . .I've got to make the decision on that and get the paperwork in next week. I don't like making decisions under pressure, yet that's the corner I've been forced into right now.
In any event, my stress level has dropped considerably. I'm sure my doc didn't intend to put me into "Oh, God, I'm gonna die" mode, but that's sort of what happened. I was disappointed in my increased PCR number, but not too worried about it. . .until I stepped into his office yesterday. His first comment was, "Did you call about your PCR? It increased, so we need to change something." Then when he mentioned MD Anderson, I totally froze up. Just not how I was expecting the appointment to go, and I was so taken aback that I didn't maintain any sort of brain function at all. Then, that threw off my whole plan to discuss the transition of insurance companies, and thus doctor and pharmacy with him, so I left without having any sort of intelligent conversation at all. I was so totally flustered that I didn't even get a copy of my lab results, which is second nature to me. I'll have to call and have them fax it to me. Sheesh!!
Posted 08 July 2011 - 11:04 AM
O.k., Phil. . .what is DTTMOIAM? I gotta start texting, I guess. I never much made it past LOL.
Posted 08 July 2011 - 11:14 AM
Phil makes a very good point about CML being a very rare disease and we do have a unique forum with very knowledgable people as well as a unique opportunity to pool our knowledge.
So Marnie while a very big part of this is trusting the doctor, ultimately it is your call. Like my old boss used to say "Trust, but verify".
The thing to keep in mind is that with the exception of your insurance dilemma, this shouldn't be a decision that requires immediate action. It would be one thing if God forbid one of us finds ourselves in Accelerated or Blast crisis. Then there isn't time to debate the issues. You have to act fast and go almost 100% with doctor's plan. In chronic phase, with stable blood, CCyR and what appears to be MMR, it seems you have some time to think about it.
Good luck, although I trully suspect you will be fine when everything settles down. I'm sorry you were so stressed out. It is unbelievable what they can do to us in a meeting, even the slightest wording that hints at something can send us into a spiral. I always think about when the head of the Fed speaks in public, every word he says is analyzed and if he says one thing that can be misconstrued, global markets can rise and fall. I once told my doctor, "when you leave this room, you will likely not think about this conversation for another three months. I'm going to think about it everyday for the next three months".
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users