Life Goes On….

Since February 2016, my PCR test results for CML have been “not detected”, and my blood counts are pretty much in the normal range. My oncologist is pleased (as am I). I am still on 300mg of imatinib, and thus far, he strenuously objects to a further reduction in my dose.

My biggest issue now is the cost of the drug. I am now retired and have a Medicare health insurance plan. Medicare does not negotiate drug prices, so I have paid much more than I did when I had a plan through my employer. Imatinib – the generic version of Gleevec – is not that much cheaper than the name brand, though there are rumors of an upcoming price drop (yes, please!). I’m hoping that our government can get their act together and address Medicare drug prices. I continue to contact my senators and congressman on the issue.

Back on the full dose.

And a very happy Day-After-CML-Awareness-Day to one and all!

Some things never change, do they? I’m still rehabbing the right knee, BUT it feels much better than it did this time last year. Chalk this surgery up as a success!

I’m not quite ready to tackle the left knee, so I asked my onc if I could return to the full dose of 400mg Gleevec. I wanted to proceed, as I lost PCR-U on the reduced dose. To my surprise, doc was reluctant. The reason? Recent studies show that taking a lower dose of a TKI to reduce side effects is acceptable as long as the labs are stable, particularly when the initial response was deep. He originally reduced my dose to boost my immune system for knee surgery, and he was in no hurry to raise the dose back to 400mg. Truthfully, I have enjoyed the significant reduction in side effects, but I’m anxious to try. So…

For the last 3 weeks I’ve been on 400mg Gleevec. Hello, leg cramps. Weight gain is a pain. Nice to see ya, diarrhea. (Sigh)

Revisionist History

Turns out that the leg pain (hip to ankle) is caused by spinal stenosis. I  had a nerve root block, declined the recommended spinal surgery, then got the knee adhesions removed.  While the back problem is interfering with my rehab (AGAIN!), I am in much better shape this time. The knee bends better and hurts less.

I am still on a reduced dose of Gleevec, as my onc foolishly thinks I’ll be continuing on the path of getting my left knee replaced.  HAHAHA!  Not!  I plan to get a 2nd opinion on my back issue, hoping to avoid the surgery.  My onc appointment is next week, and I hope to convince him to return me to the full dose of Gleevec. Fewer side effects are a relief, but I’d like the PCR results to say UNDETECTED once again.

Still Kicking….

Funny, my knee is on my mind more than the CML. Eight months post total knee replacement, and the new knee still doesn’t bend enough for me to climb stairs. I also have trouble when I first stand up – I just can’t take that first step. My surgeon is sending me for an MRI to verify that I don’t have a pinched sciatic nerve, then he plans to address the knee by removing scar tissue and re-calibrating the plastic insert in the knee.

Meanwhile, I’m still on the lower dose of 300mg of Gleevec, as some of my labs are low and the onc is concerned about my ability to fight infection. Note that my WBC is up because I was taking steroids, not because I’m improving. The disappointing news is that I’m no longer PCR-U. The good news is that the CML remains well-controlled and the PCR numbers are low.

Back to Work!

Still rehabbing the knee, but cleared to return to work.

Gleevec dosage raised to 300mg. We’ll sneak up on the full dose.

BAM! Here come the side effects….

Damn!

It’s still here. A molecular (PCR) test taken as an afterthought came back POSITIVE:

Quantitative real-time PCR analysis for the BCR/ABL fusion transcript is POSITIVE at a relative level of 0.00462% K562 expression [BCR/ABL major (CML) breakpoint region].

Translation: It’s not gone. Never was. “She” was just toying with us. At 1/2 dose of the Gleevec, she’s back, and laughing at me. Damned you, SHE-DEVIL STEM-CELL.

Depressed? Oh, yeah….

Survey Says…

UNDETECTED. Yep. The tests from the bone marrow biopsy – molecular and FISH – confirm that the cancer is officially in hiding, which means that I can finally think about getting my knee fixed.

Here’s the plan that has already been set in motion:

1. Cut the dose of Gleevec in half to allow my depressed immune system rebound somewhat. CHECK! I feel half as bad, now!

2. Test the blood in 6 weeks to verify that the immune system has improved. CHECK! Still not normal, but better.

3. Schedule the knee surgery. CHECK! I will have a new knee in 6 weeks.

4. After a period of time, resume the full dose of Gleevec to keep the cancer on the run.

Yeah, I can live with that! 🙂

On Pins and Needles….

That’s just where I am. And how I’m feeling, by the way, is like a pin cushion. Following doctor’s orders, I had a bone marrow biopsy & aspiration. I did my best to try to talk him out of it – after all, my last 2 PCR (molecular) test results were “Undetected”. However, in addition to another PCR, they will do a “FISH” test – fluorescence in situ hybridization. This test counts the number of cells in the sample that have the very bad BCR-ABL gene within the Philadelphia Chromosome that was mistakenly formed. The FISH test is actually less sensitive than the PCR test, but Doc wants to see one, all the same.

The results of the standard blood test that was taken at the same time came back. Not much has changed – the counts are still low, and I am still lethargic. Yawn.

Now we wait 10 days or so for the BMB/BMA results. Tick… tick… tick….

Happy Anniversary!

It’s been a full year since I was diagnosed with cancer.

And much to my relief, my most recent molecular test indicates that I am still PCR-U! Undetected. Unseen. Unbelievable! Not cured, but the “mother” stem cell – the one who caused the bad Philadelphia chromosome translocation – is in hiding. Let’s keep her there, shall we?

On the flip side, my immune system is depressed. Very, very depressed. Most of the side effects I’m feeling from the meds are related to that, including fatigue, fragile skin, the inability to fight off infections, and something I’ve never experienced before – fissures. They won’t heal, and it’s excruciating. Treatments are limited for me, too, because of my immune system. What next?

Doc has a plan: After next week’s 1-year anniversary bone marrow aspiration-and-biopsy (really?), he will reduce my dosage of Gleevec. Hopefully, my depressed immune system will become a cheerful one, start fighting those infections, and I can focus on getting my knee fixed. Later, I will go back on the full dose of Gleevec and keep “Mother” on the run.

Limping Along… Literally! (And some good news, too.)

Two years ago, after 2 arthroscopic knee surgeries, plus ineffective injections of cortisone and other lubricants, a total knee replacement (TKR) was scheduled.  Following a work-related postponement, routine bloodwork showed anemia. Probed from top to bottom for 6 months, I finally got a clean bill of health… but then the white cell count spiked – yet another delay, but ultimately leading to a confirmed diagnosis of CML.

Fast-forward through 6 months of targeted chemo with Gleevec, when the oncologist gave the green light for surgery. Hooray! TKR scheduled, then cancelled, when my blood counts tanked. The  immune system is not yet stable.

I am back on a neutropenic diet, avoiding the things I love, like salads, fruits, nuts, yogurt.  Everything must be cooked or pasturized.

On the bright side, the results of my last PCR molecular diagnostics test came back, as follows:  UNDETECTED!  I can hardly dare to hope, but it appears I’ve had a Complete Molecular Response.  While millions of leukemic cells still circulate in my bloodstream, they are too few to measure.  This means that the Gleevec is doing it’s job beautifully.

And I’m Googling “canes”.