23 replies to this topic

[scuba]

I had my three month blood test today at M.D. Anderson.

I am waiting on the PCR results (next week), but I thought I would relay the CBC results since my protocol was changed.

At last test three months ago, I increased my Spyrcel dose from 20mg. to 40mg. There was a concern that I could re-introduce severe myelosuppression again.

Some of you know that I had been on 20mg. Sprycel and barely had my Neutrophils in the normal range at that dose. They hovered around 1.4-1.5 (which for me was great!).

We decided to give 40mg. a try and see if I can nudge my PCR into undetected and not lower my Neutrophils too much. I am a candidate for "cure" trials if I can get to PCRU.

Well ... surprise surprise.

After 3 months at double dose (40mg.), my Neutrophils went up and are now solid normal (2.5). In addition, my platelets went up and they are now in the normal range.

Only my red blood cells continue to be suppressed (along with hemoglobin) at 3.5, but not too bad.

Also, in the last 3 months, I decided to change my diet to plant based (although I sneak in a steak once in a great while), no refined anything except fermented grapes and I run 2.5 miles a day (lost 15 pounds).

I think less about CML now, and more about heart, arteries, general fitness which is probably a good thing. We're told over and over that we'll die of something else, not CML. I believe them.

I am pleasantly surprised at the Neutrophils not tanking. I look forward to what the PCR result comes back. It will be a tough decision to lower my dose if the new dose at 40 mg. puts me into PCRU territory.

Michael

p.s. I do feel the 40mg where I never felt the 20mg Sprycel. At 40mg, my heart pounds a bit more at bedtime, two hours after I take the double dose. It fades away two hours after that. Taking 20mg. Sprycel never did that. So I would still like to go back to 20mg if it turns out 40mg. didn't drop my PCR.

[ChrisC]

Something good is happening! Can't wait to hear about your upcoming PCR(U) report — fingers crossed that's what it'll be this time

[scuba]

Chris - it's really strange. For more than a year I have been experimenting with different approaches to get my Neutrophils (WBC's overall) to increase. I was lucky that at least on 20mg. my Neutrophils were adequate and I also had a great response (Fish=zero; MMR)  (disclaimer: I do take 8 grams Curcumin).

Then I convinced Dr. Cortes to let me increase my dose to 40mg. and see if I can push through to PCRU and watch the Neutrophils. He agreed ... but wanted me to have CBC's every two weeks. That night I started 40mg. Sprycel.

I had a full physical (first time in 15 years!) a short time later so that I can get back in shape military style (my sons are military - not me) and the blood showed my Neutrophils did drop from 1.7 to 1.4. But I just forgot about it and never re-tested. My wife reminded me to get a CBC and I told her that I know what low Neutrophils feel like (mouths sores develop, slight fever) and I don't have low Neut's. I kept taking the 40mg., had no more blood tests and went through the summer Scuba diving and working. And also dropping 15 pounds and getting in much better shape (to the chagrin of my wife).

And then today finding out my Neutrophils are back to normal. Very strange. And Platelets too.

I will post here when I get my PCR results. If they are the same as always, then back to 20 mg. and that will be it. I'll just resign myself that 20mg. is what I need to stay alive and manage the disease. But if my PCR has dropped a lot (to -4.5 log) or even has gone undetected - I start the clock for TKI cessation as you have done!

We'll see in about a week.

Michael

[LivingWellWithCML]

That is great news, Michael.  And congratulations on your weight loss and new workout routine!  I have a couple of questions about your routine over the past 3 months if you'd be willing to share:

• Do you take Sprycel 40mg with dinner/food, and if so, do you still drink red wine in the evening around that same time?
• When do you take Curcumin 8g?
• The "pounding heart" symptom is interesting - could be increased blood pressure (?).  Do you feel anything like that during your daily run?  Any idea what your average heart rate (bpm) is during your runs?

Gleevec has been pretty hard on my gut the past couple of years, so I have recently started wondering if a switch to Sprycel might be easier on my GI tract and maybe drive me to PCRu as well.  But I am very committed to road cycling and am building up my endurance & speed for some competitive racing next year.  I'm almost 45 yrs old, but I push my body pretty hard on most rides and it has handled the increase in mileage and speed very well - even with Gleevec pumping through my system.  On tempo rides, I average between 145 - 150 bpm for about 2 hours, and my heart rate will sometimes exceed 170 bpm on tough climbs for a couple of minutes.  I've been at the biking thing long enough to feel confident that Gleevec's not causing any problems with my heart.  In short, what's your take on Sprycel and do you feel it has any impact on the health of your heart during your workouts?

Dan

[scuba]

Dan -

I take 40mg at bedtime - and that can vary significantly from late evening to later evening - often times after midnight.

I drink red wine whenever I want, but mostly with dinner - but there have been occasions when I am out and about and take Sprycel with red wine.

I take 4grams curcumin in the morning and 4g curcumin in the later afternoon.

The "pounding" is only at night after taking Sprycel and is not a bad feeling, just a noticeable one. My runs are normal (no pounding, just fast heart rate; max for my age - I do sprints now).

Sprycel has no impact on my GI tract at all. I don't notice anything taking the drug. Also - Sprycel's half life is 5 hours in the blood (i.e. 1/2 of the drug is metabolized in that time - follows a log linear decline). So after a nights sleep most of the Sprycel is metabolized by the time I go for a run.

[LivingWellWithCML]

This is all very helpful to know about your journey -- thank you!  Now get out there and go for your run (if you haven't already). :-)

[Susan61]

Hi:;  Sounds Good To Me!!!!   Its good that you can do all these things like Scuba Diving etc.  That is so important.  I wish I could be more active myself.  Lets hope you can go back down to the 20Mg. if you feel better on that dose.

We might see that PCRU with this latest test.  I will be looking for your latest posting next week.

Your Doing Great , and thats all that matters right now.

Susan

[scuba]

I have my latest PCR results from M.D. Anderson:

0.007 IS scale on 40mg. Dasatinib.

This result is 50% lower than last test, but within the margin of sensitivity of the PCR test and back to what I have had before in January on 20mg. Dasatinib (0.006). The only difference is that I went back to a full 8 grams of Curcumin.

As my blood counts have improved despite the increased dose (with the exception of red blood cells) - looks like I'll stay at this dose - but I don't think it matters. 20mg or 40mg. the result is the same for me. Sprycel is a threshold drug and my experience is proving that to me. More doesn't translate into better response.

I am thinking about going back to 20mg. and see if I hold here - but I suspect Dr. Cortes will want me to stay at this new higher dose even though I am the one who pushed for it. Now I am probably stuck with it. Heck - he'll probably want me to go to 60mg!

So close ... I can't seem to break through to PCRU. I suppose I could increase dose to 60mg. since my counts are no longer affected (which I interpret to mean my bone marrow is getting more healthy and populated with more normal cells not subject to suppression by Sprycel).

[LivingWellWithCML]

Great result!  You get to live healthy, run, and drink wine, and you can continue on a lower-toxicity dose of Sprycel with almost no side effects.  What's not to love about that?

Does Dr. Cortes think that the Curcumin regimen is a contributing factor toward your treatment response on the low dose?

[Tedsey]

Scubs,

I am fighting to be reduced to 70mg dasatinib, and my last PCR was 0!  Glad all is well and the drug knocking it out a bit harder.  My white counts are still low (2.2 and ANC 1.0-.9).  My onc believes it is still the disease.  Now that my PCR is at a good level, I question now if it is the dose.  She is a good oncologist, and I think she feels insecure about dose reduction.  We agreed to wait until my next PCR results come in.  It would be interesting to see if it is the chicken or the egg with me.  Although my PLT are looking good 94,000, I am showing signs of bleeding all over (for me, it is: eye bleeds, I had broken vein in one arm--but no injury, such as a blood test, petichiae, big red splotches (prob. bruises), and long menstruation.  Nevertheless, no one is worried about serious bleeding because of the count.  However, I feel the quality of my PLT are not so great.  I would really like to know how much all counts are tied into the disease and how much they are due to the drug.  And ironically, I am not anemic with my last blood count.  Still taking 8g of curumin daily with the dasatinib.  But wondering if the curcumin is interfering with my PLT.  However, I have been taking it for so long.  When I started taking 8g, my PLT rose (as did my HGB).

Take care.  Glad to hear the good news!  You will get to zero.

Tedsey

P.S. After a year of blood tests taking an iron supplement, I found that there was absolutely no change when I decided to stop taking it.  I am not sure how effective iron supplements are in pill form.  Maybe one has to have a better fit with the type of iron supplement to see any results.  I always had enough iron storage in my bone, but just had an issue with HGB.

[scuba]

HI Tedsey,

The thing about CML is that it is a slow disease - especially with no Blast cells and bcr-abl levels below detection. It probably would take many months for there to be a one log increase and you would still be MMR. My point is you can experiment. You can try lowering your dose from 100 to 70 and see if your PCR climbs a bit, or in your case if you become positive again. You can always go back to the higher dose. But what if you stay at "zero". Then you decide whether to go to 50mg and see if that holds you at "zero" and take another 3 month test. There is no way that changing dose downward would suddenly cause CML to explode and become blast crisis. It just doesn't work that way. I went 3 months without any drug whatsoever in the early days and had barely a nudge in CML (although it did increase a small amount) although I was taking Curcumin.

We know that 20mg can bring patients to MMR. We know that some patients need more drug to achieve that level. In my case, 20mg. was dramatic - but as you know I believe the Curcumin is augmenting the Sprycel effectiveness. When I increased to 40mg., I did get a drop, but only back to where I was in January. I also increased my Curcumin back to 8 grams so who knows.

Curcumin doesn't interfere with Platelets. It is a mild thinning agent (makes blood cells more slippery too). Have you checked your vitamin K,k2 and vitamin D3 levels? K and D3 work together to provide for proper clotting. My D3 was very low and I had to take supplements. I also eat Japanese Natto (every day) in order to get vitamin k2.

If you bleeding is a big issue, perhaps you should stop taking Curcumin to see if it goes away?

All the best,

Michael

[Susan61]

HI:  I would stay on the 40mg till the next PCR test.  My curiosity would get the better of me to see if I could get there on the higher dose, and if you need to go to the 60 then do that.  Once you get to your PCRU that your striving for, you could then cut back to see if you could maintain the PCRU status.

     You have been playing around with different methods, and this would be worth the try I think.

     Either way, your doing good like I had said.  We all follow your progress to see what we can all learn.

Susan

[scuba]

Thanks Susan...

I will stay at 40 mg for the next 3 months and see what happens. I almost certainly won't go to 60mg. I'll just stay at 40 or go back to 20 at next test.

Dr. Cortes told me it's my choice. Either way, he's fine with it. My CML is low level and 20 or 40mg keeps me there. He said there is a 40% chance that I will be PCRU in the next six months. And if not - six months after that. But once I get to PCRU, then I can enter a trial for "cure".

I lost weight and am running again. I'm almost back to my college weight. Amazing. I am more concerned about diet, exercise, fasting sugar, blood pressure, heart health than I am about CML. And which wine to buy in the fall. So many choices. So many good wines. Not enough money.

Oh...did I mention ... Your're cured. Fantastic.

Michael

[Hokieman]

Scuba,

Sounds like things are going well for you. I"m in Virginia. Did Dr. Cortes share any specifics about the trial for a "cure"? Thanks.

[Susan61]

Hi Michael:  You always make me laugh .  You have more faith in my cure than I do.  Your doing the best thing as far as maintaining your health in every other way with diet, exercise, etc.  Will be very interested in your trial for Cure.

The one thing I have in common with you is   Not Enough Money.  Keep up the good work.

Susan

[ChrisC]

Hi Michael,

It's looking good in that you are owning the process. A successful PCRU reading is going to be soooo sweet !

Getting there — PCRU — is half the fun, in the perspective of being farther and farther away from what you were diagnosed with.

The other half of the fun is living the rest of your life without CML!

We're all on the same team: yay team! Everyone doing their best with the hand that's been dealt. . . .

ChrisC

[scuba]

Thanks Chris -

I am eager to test Sprycel cessation. I can't do that until I reach PCRU and hold it for at least six months (two test cyles). The normal rule of thumb is two years, but I want to see if I can stay at below detection with only Curcumin. If after that time I become positive again, I will just resume therapy. I will be tested every six weeks once I stop.

It all depends on whether I can go below the detection threshold. I'm so close now. What is really encouraging is that my blood system - after three years - is normalizing, even with a doubling of Sprycel dose. So we'll see.

The cure trial (one of two drugs being tested now involving the Hedgehog pathway coupled with a TKI) can't begin until I achieve PCRU - so in that there is a chance at eradication, not just living with minimal disease. Of course there is no way to fully know. Once a person falls below detection (PCRU) how do you know if you are cured? Just time I guess. The longer you go without 'relapse', the more likely the disease is gone.

But tell me Chris - will you ever stop having a PCR taken?

[ChrisC]

Hi Michael,

It sounds like your plan is set: great that the trial option is there, with the guidelines and protocol already established.

One question: I seem to remember that in the Euro TKI-cessation trials that if you had to restart a TKI due to significant increase in PCR test results, the guideline was to stay on a TKI thereafter. Meaning, no getting to try going off it again. If that is the case, is it a new feature that your trial will permit such a thing later on if there is ever a significant increase in PCR test results, since your maintain-PCRU will be for only six months prior to quitting Sprycel, rather than two years?

I know that it's all a work in progress, and that what is a guideline now may be flexible over time, as more is learned and new results are taken into account.

Me, I am glad to have maintained PCRU for two years without any change from 0.000 prior to stopping Sprycel two years ago. Even with that, whenever there is some physical change that appears to resemble any previous CML symptoms, I go into "alert but not overly concerned" mode. Once bitten, twice shy, I guess. But the innocence of just living pre-CML simplicity has not yet returned for me.

As for ever stopping being tested, just yesterday I saw my onc for my two-year post-Sprycel checkup. As before, all CBC levels normal (as I'm not on any medication, he no longer ordered a CMP — next time, he says) and PCR is 0.000 IS. My onc suggested now going to doing PCR testing once per year; I reminded him that the specialist he referred me to, prior to my stopping Sprycel two years ago after attaining and maintaining "undetectable" for two years, had written the instruction that I do PCR testing twice a year for the rest of my life. I pointed out that we don't know why CML developed in the first place, and testing twice a year seems reasonable.

Ask me again in another year! Once I'm further along I hope to be not minding the time passing, and not being tested will be the norm.

All the best for your next testing!

ChrisC

[scuba]

Chris - you have a great handle on CML and your path.

A true cure is probably elusive in our case. I believe translocating genes which  cause CML happens all of the time in the general population. When it does - the body recognizes the aberration normally and kills it (T-cells). In CML disease, the ability for the body to recognize the cancer eludes the immune system and the disease process begins. Several years later, we go into the doctor complaining of Spleen pain or other symptoms.

In the case of people like yourself who "had" CML - and were treated with a TKI, and became disease free after successful treatment - what is happening? It is possible that you were able to eradicate all of the disease, but are not "cured". Should a stem cell translocate again - it could re-ignite the disease since your body has no defense. In that case regular PCR testing will catch it. Once/twice a year is probably sufficient.

Or, perhaps you have developed a better immune response that you did not have the first time CML occurred and now you are inoculated from getting it again (best outcome). In this case, the TKI was necessary to reduce disease burden so that the immune system can take over. And you are done - no more CML ever. Testing gives you peace of mind.

The good news is that CML is a slow disease - which means should it re-occur, twice a year testing would easily catch it long before it becomes a problem again.

The cure lies in T-cell response (Dr. June's work at U.Penn) and treatment. Then we're cured. LSC eradication (the trial I hope to start) would probably just stop this round of CML until it re-establishes again. But at least there would be a "treatement" that is not life long.

[Susan61]

Hi Chris:  I wish you the best.  I think that its great how long you have been without medication, and after only a short period of time at PCRU.  That is why Michael teases me all the time, and says I am cured.  I have been PCRU for 11 years, and have had CML for 15 years this Dec.  I have just wanted to cut my dose of Gleevec, and did not even ask to stop it.  My doctor thinks I will lose my response, therefore, I still take my 400mg. Gleevec everyday.  I like seeing that 0.000 also.  I have to see now how Michael does when he gets into the Cure Program.  I go for my next PCR test in January, and I will see what my doctor has to say at my visit.

Susan