Thanksgiving 2010 and a time to count my blessings

I am loving spending a cold lazy day by the fireplace, reading, writing and ignoring my long to do list. My son provided the necessary holiday celebration yesterday with a wonderful gathering of his friends in his apartment. Yasmin and Ben fed us all well (no turkey) and I can't imagine a better way to have spent the day.

Today we strolled along the Pacific with the tide so far out it seemed you could have walked to Catalina Island without getting more than waist deep into the wet coldness of the ocean. And the purple and orange sunset and the smells of the turkey cooking and the clear crisp air completed the perfect land and seascape. Another magic day turning to night in SoCal.

My leukemia and ITP have become blissfully boring again.

Yesterday I finished my sixth and final dose of rituximab 500/M2 along with IVIG. I have started to taper my cyclosporin down to 100 mg 2 x a day

This small drop in cyclosporin from 150 mg 2 x a day was enough to get my BP back in the normal range. My uric acid (think gout) is back in the 7s from 9.5 and my creatinine (a measure of renal function) has stabilized in a safe range after slowly rising for weeks.

My concerns about anemia have not materialized, as my fall in HG has also stopped. My total lymphocytes are a bit low (0.66) from all the rituximab, but I am not concerned. My neuts are adequate and the IVIG helps protect me. My infection risk is not much higher than its usually elevated status. The only cloud on the horizon is a slowly rising MCV, now 102, (normal is 80 -100) which can be a subtle marker for the coming storm of bone marrow failure or MDS. But I just had a bone marrow biopsy a few months back, and it looked very good, so I am not too worried about that either.

Oh, yea, my platelets were an astonishing 351,000.

And all my palpable lymph nodes are pretty much gone- small shotty things of no consequence.

So my ITP seems to be off the table for now. And the CLL is in retreat. How far in retreat is a question that won't be answered until the spring with a bone marrow biopsy and CT scan.

I have managed to avoid the nasty side effects of cyclosporin and with the ability now to safely taper the dose, I have dodged that bullet again.

I can stop my weekly trips to the cancer infusion center and will try to stretch my visits for IVIG to longer than 2 weeks.

And I shouldn't need to decide a darn thing about my CLL for a few months.

Less to blog about.

More to be thankful for.

Austin. Music and Platelets

Life is sweet and full of music.

On a whim, after a vegan meal, went to the famous Cactus Cafe in the Texas Union at the U of T in Austin, and was blown away by Junior Brown

I love Austin.

Last time I was here I was lucky enough to Willie Nelson.

This place is a musician's paradise

Platelets were higher on Wednesday than 2 weeks earlier. Still taking the immunosuppressive, blood pressure raising, son of a mold, cyclosporin, but my kidney function remains good and it is suppressing my wanton immune system's wish to wipe out my platelets.

Still getting IVIG and blood work, but that means I am only in the infusion center 2 x month instead of weekly as I have stopped the Rituximab.

I am in a deep remission, deep enough to visit Austin and hear some great music

Just how deep will be determined by a bone marrow biopsy in a a month or so.

I am loving it.

New to CLL?

Here is a nice intro to CLL for newbies with a human interest angle from Curetoday.com. It is deeper than most introductions, but still accessible for those who are blessed to not need to be steeped in the nuance of the complex disease.

All of the doctors interviewed for the piece are tops and here's hoping that one of them leads the charge for a cure. Real soon!

Obviously based on my history, I am not in complete agreement on the last ditch role they see for transplant, though I am less sanguine about its place due to its evil dark side, graft versus host. I have seen too many good souls taken down that path without returning.

I am the 11q del that is mentioned for its propensity to have short remissions. No fun.

BTW, I am at the infusion center and I just received my CBC results. Platelets are a wonderful 274,000 today so it looks like the cyclosporin and rituximab is continuing to work its magic though not continuing to the lofty supernormal counts I had prior to my transplant. This hints at a weaker response than last time when the numbers were just up and up, but it way too soon to see a trend. It also suggests because of the 60,000 drop from last week that the IVIG I received two weeks ago may still be helping. If that is the case, I would expect a small jump when I check the count again next week before my next rituximab infusion.

If the numbers continues to fall, then I will need a Plan C and I will need it fast.

274,000 also means I can go hang gliding tomorrow. My only worries are the usual concerns whenever you jump off a mountain: not getting airborne with the resultant crash, midair collisions with other fliers, and hitting something you shouldn't when landing, but not the additional ones of bleeding and bruising from any minor jolt or twist that comes with low platelets. This is my chance.

As the great scholar, Hillel said: If not now, when?

337,000

My platelet count has increased 11 fold since starting the rituxumab (R) and cyclosporin (CSP). I must saying it is working better than I or any of my doctors predicted for my unorthodox therapy. Now if only my pension plan would do the same.

337,000 is more than double what it was last week, and last week it was already normal. This is the highest level since they crashed when my ITP came back last July.

This unusual but not too toxic med mix is unknown territory, so the length of my first course of R or the dosing and timing of R maintenance is stuff that needs to made up as we move forward.

Moreover CSP has a mixed rap sheet. It helped my CLL and there are a few case reports of its anti-leukemic effects, but it is immune suppressive and could and has taken the brakes off cancer growth for others.

Maybe the true hero of my present story is the sesame oil one tablespoon twice a day that the herbalist recommended for low platelets even though the medical literature, while not silent on this, is also not screaming out the proof of its efficacy.

Maybe it's the Beatles watch that I have taken to wearing to bed with me. Everyone knows how good the Beatles are for platelets.

Yes, I am expecting a long and easy course, and a healthy happy pause before I must change course again.

If the family can work it out, maybe I will finally go hang gliding this weekend.

Back to Normal

My platelets were 154,000 this morning so my new treatment is working. And working fast.

I got some time on my side again, but not now, as I have been away from the beach from 7 this morning. It is 9:15 PM now and they lock the gates at 10:00 PM and I am still doing chores at home.

At the infusion center all day, then a workout, then chores.

Good news

Platelets were a mighty 308,000 10 days pst IVIG. I was worried about the 100,000 slip last week, so I got tested 1 week early. This means the trip to Israel is almost certainly a go. I will have a CBC and IVIG the day before I leave, but now I am sure those results will be good enough to hop on a plane to the middle east.

102,000

That is the platelet count today, 2 days after my latest low dose IVIG.

Celebratory news. Not quite a yahoo or whoopie or even a rah-rah, but still darn glad tidings.

It gives me some breathing room.

I am no longer in crisis mode, but all the decision points are still the same, just less urgent.

I am thankful for the respite and especially thankful for all the kind words and prayers.