20 replies to this topic

[ChrisC]

This is my 13-month follow-up since stopping Sprycel 100mg on Sept. 13, 2011, after being consistently PCRU (0.000 w/o variation) since Sept. 14, 2009. At my request, I received permission to try stopping TKI treatment to see how I'd do, since as well as having been PCRU for two years, I had reached PCRU 11 months after dx, and four months after switching to Sprycel, due to side effects on Gleevec. My quality of life on Sprycel was dominated by extreme fatigue, some brain fog, bone and joint pain, etc., but no breathing problems. However, it looked good for my chances to live without TKIs, and to have a better quality of life, so I went for it.

When I asked to try being off Sprycel to see how I'd do, my onc had me consult with a CML specialist at Stanford. He, his assistant, and I went over everything and discussed all sides of the issues, checked my test results, and I was given their support in my one-person trial. For the first nine months I did PCR testing every month, and every month it remained 0.000. Then my onc and I decided it would be every four months we'd meet, having done blood work in advance.

I was looking forward to meeting with my onc yesterday, four months since our last meeting. I had had my blood work done three weeks ago, so there would be plenty of time for the PCR test results to come back. This result from Quest was to be the first since they started reporting in IS (Int'l Scale), and as all my PCR tests have been done by Quest since dx in Oct. 2008, I very much wanted to see if my constant-since-Sept. 2009 "0.000" test results would hold, given the new IS standard. A few folks on this board have had slightly raised results when their PCR testing switched to IS: I was curious how I'd do!

My onc said the results aren't back. So he'll see me in three months, instead of four. That works for me! (If the results show up, he'll call me if there is a problem; he just said that there was some problem with the test so no results were back.)

My CBC results would show if there was anything amiss, and my WBC is 4.44 (was 459k at dx, and 121k when I started Gleevec; ha!); platelets are 250 (they have always been in the normal range). The only things out of the normal range are ones that I bounce around in a little bit over the past year: Eo #-ABS is 0.89 — it was normal until Nov. 2011, when it went up to 1.11, then it went down a bit each month until I was in normal range from April to June this year, now it's higher again. On the low side is Neut #-ABS at 1.57, and again it has bounced between 1.23 in Apr. 2011 up to 2.59 in Jan. 2012. Nothing to worry about!

My quality of life is still affected by some fatigue: I can be active for a few days, then will sleep for 11 hours. On days when I've been too active, I nap for anywhere from 15 min. to 2 hours. / I'm 61 years old. Tomorrow I go see Bob Dylan and Mark Knopfler perform in Berkeley : I still enjoy life, but it's on my terms, no straining. As I had sudden hearing loss after starting Gleevec in Oct. 2008, I now have hearing aids, and that will improve the show for me (being a fan, there can be no doubt!). I had hoped that the hearing loss would improve after stopping Sprycel, but that's life. So is the arthritis in my knee, apparently!

That's all for now, folks. I am wishing you all the best of health and quality of life, and lots of love and bliss in your lives! Go Giants!!

ChrisC

[Rissa]

There's hope for us all! 

[simone4]

Chris, that is great news. I hope the next results are favorable as well.

You must be excited about hearing Dylan.  I heard him perform twice,

once with "The Band".  I'll never forget hearing Levon Helm perform.

You live in my favorite state and when I came back from France at

the end of summer, I promised myself to move there. Lovely place,

lovely people.

Have fun at the concert.

Simone

[scuba]

Hi Chris - Thanks for the summary - I am following your journey closely. I intend to follow your path assuming I can get to PCRU myself and hold it.

I am curious about your  comment though - that your CBC tests would tell you if things are amiss. I would think that long before your WBC's showed any increase, your body would be showing large increases in PCR and/or FISH. It's my understanding that before the body shows loss of control of cell counts (runaway white cell/platelet counts, etc.), PCR would have to be significantly elevated (3 or more orders of magnitude from MMR) and FISH significantly positive.

In other words, your routine PCR tests are the canary in the mine shaft that will inform you that CML is growing again. After just a few weeks on Gleevec in the early days, my hematological response was fast (felt normal, WBC's fell to normal as well in two weeks), but FISH was still in excess of 90% and became 100% and PCR was equally as high - yet CBC was normal.

I think of CML in a similar way to icebergs. In order for the ice to tower up above the water, a massive foundation of ice below the water is needed. CML rears its head with symptoms and blood count disorders only after a massive foundation has been built. Only PCR/FISH let us know that something wicked this way comes. I suspect it would take many months (six or more) for for someone in CMR to have CML build back up enough following TKI interruption to show up in WBC counts. And this is assuming that CML immediately starts to re-grow once the TKI is removed.

I am curious if anyone has any references on this (time from disease onset to WBC count elevation). CML is a disease that takes years to show up in a routine blood test (high white cell counts). I do wonder if it would take just as long to re-appear once it has been beaten back to PCRU. I don't know ... just curious.

[ChrisC]

Likely you're right about it ) But I'll have to wait until my next appointment to get my PCR numbers to see how they are doing.

My simple assumption — just gut-level intuition, no scientific data at all, given above — is that because I'm "healthy" and my system remembers how to deal with any incorrect BCR-ABL appearances, along with anything else that may come along, should there be any (oh yeah, still there's millions of Ph+ attackers, I hear say), then there might be an increase in such hard-working little soldiers in my blood, out there doing their job, and this increase would be evident in my CBCs.

And I assume that it was the previous loss of these hardworking little blood-soldiers' collective memory of how to correctly do their job (perhaps due to exposure to some environmental factor that is no longer affecting me where I live now?), thus having allowed the top-level Ph+ stem cell to replicate in the first place: now they remember correctly — or the misinformed defenders got replaced? — and they are all working together correctly again. . . .

Who knows? I don't. I just know that for some reason the numbers on the PCR tests have all been zeros for over three years, including for almost one year off Sprycel (last one was in June, so nine months post-Sprycel). Something worked right, and my system is now able to hold its own. I just expect that the challenges of finding and annihilating any errant CML invaders is being carried on correctly now. And if there is a battle or two being waged, there would be evidence of that showing up in my CBCs. But likely you're right too.

ChrisC

[ChrisC]

Hi Simone,

Is there a late-ending summer for you in France? Lovely! I lived there for 5.5 years in the '60s, being in a military family, outside of Paris. Good memories

Please do come to California's Bay Area, it is lovely as well. About 10 years ago, I read that the climate here is like only six other places on Earth, and that it is the only place in N. America with this climate. This explains the real estate prices, of course! And the happy people, too . . .

I've seen Dylan four other times in the past, though not in the earlier days. Yay Levon! He shared his gift well with us.

Thanks for your encouragement. Good health to you!

ChrisC

[ChrisC]

Yes, Rissa, there is indeed!

[GerryL]

Hi Chris,

Love hearing about yours and Joel's progress, I will hopefully be following in your footsteps this time next year.

I agree with Michael in that the PCR tests will show the initial progress. My white cell count was just outside of normal, not enough to worry the doctors whenever they looked at my results, this went on for a year or so. It just stuck in my head when one of them said that my Basophiles were slightly elevated, so I went home and Googled it. Eventually six months later, one of my GPs decided I should see a Hematologist. The Hematologist commented that I was still under the radar and it was lucky the GP picked it up. LOL. Interesting thing, I've had two BMBs and they were negative, (or a bad sample) for CML, but the CML was still showing up in the blood.

Keeping my fingers crossed that the IS results are no different from your previous ones.

[hannibellemo]

Hi, Chris,

Keeping my fingers crossed for you!  I agree with Michael. I was off Sprycel nearly 4 months (MMR, not PCRU) and my CBC sTayed rock solid normal but my PCR at the end showed nesrly a 2 log increase.

After 3 months it's going back down. Yea!

Good luck"

Pat

[sharcare]

So happy for you Chris!   BUT I don't understand all these PCRU's and CBC's!!!    I was just dx in July and started Sprycel in Aug.  My WBC count came down from 144 to 56 in 26 days and is now 38.  I have never been told any other numbers but my WBC count.   Whats all this other stuff u guys are talking about?  Shar

[KevinT]

Hi Chris

    Keep it up , am following your progress. My Onc will not let me off sprycel but am using you as an example to him

                                                                                                                      Kevin

[ChrisC]

Hi to all who've read, responded . . . I appreciate your support, thank you!

What the underlying point is, which appears to have been missed by everyone including myself, is that I am apparently spontaneously no longer thinking like someone who has CML — therefore, I look at the CBCs for signs of good health!

Of course I know the supreme value of following my PCR results, that is why I said I was so looking forward to seeing them

I am very happy, though, that my onc obviously has no problem seeing me in three months, instead of four months, for my next PCR results.

All the best to everyone,

ChrisC

[ChrisC]

Hi Sharon,

Yeah, none of understood "these PCRU's and CBC's" when we were first diagnosed! Ha!

But there is help at hand for all newly diagnosed folks: read Trey's precious posting addressed to all of you at http://community.lls...age/14707#14707

Then you'll be all up to speed on what you need to know!

Take care,

ChrisC

[GerryL]

Hi Chris,

I know it is still early days for stopping TKIs, but I wonder if there are any comments being made about how long PCR testing may continue once you are off and maintaining PCRU?

[ChrisC]

Hi Gerry,

The Stanford specialist suggested that, with a year or two of good results, it would be enough to do PCR testing twice a year for the rest of my life. I'll have to check the exact wording he used in his letter to my onc re treatment, whether I did fine and/or whether there were bumps in the road, what to do. But for my peace of mind, I'll do it just as he recommends: twice a year, looking for all zeros!

ChrisC

[hannibellemo]

Sharon,

I hope by now you have had a chance to read some of the information that ChrisC gave you. It is important that you know everything you can about this disease because it is uncommon and the average doc doesn't see this very often, if ever! Just knowing your WBC is not enough, this tells you very little about how your CML is doing. If your doc isn't doing these other tests you need to find another doc who knows how to treat CML.

Please let us know how you are doing!

Pat

[Tedsey]

Chis,

This is a late reply, but I am so glad to hear you are doing so well!  I hope you get to stay off of a TKI indefinitely and grow very old.  I am approx. twenty years younger, and here is proof that age has nothing to do with progress, (not progression), with this disease.  Also, being dx with a high WBC doesn't mean gloom and doom.  I was also high, and low PLT for a "normal" CMLer at dx.   Good for you staying active and enjoying yourself (you are still young!!!!).

Take care!

Teds    

[ChrisC]

Hey Teds,

Thanks — we're all on the same boat, heading for healthy shoes we hope! Our onboard shuffles may differ, yet we all advance with the breakthroughs and advances provided by the amazing researchers and physicians.

Just a comment on your journey: your platelets may be few, but they function exceedingly well (they are so efficient and intelligent!). Well done!

ChrisC

P.S: As I write this, the SF Giants just won the World Series: where's the bubbly?!! Whoo!

[GerryL]

I've got my Giants tshirt on today. Yay - not that it means much to most people here in Aus.