Monday, October 5, 2009

All remains good in the land of platelets

My platelets were in the normal range -157,000- before the first drop of today's IVIG coursed through my veins. That is a drop from 220,000 on Set 18, but that was a full 17 days ago when I last got a dose of immunoglobulin. Today the count is not only still in the normal column on the report, it is way out of the danger zone of <30,000.

In fact, they haven't been out of the normal range since Aug 21, and their nadir was a very very safe 99,000.

The fall had actually started to level out before I started treatment. ITP has been known to hit hard and then peter out.

The CT scan in August had showed possible very small splenules. Sometimes after a splenectomy, small accessory spleens, dormant since birth, get a wake-up call and start growing to do the work of the missing spleen in gobbling up dead and dying red cells and platelets. Sometimes the splenectomy itself spills a few cells in the surgery itself that find a home in some warm vascular bed and start growing up. This is called splenosis. In either case, ITP or AIHA can return.

Neither these processes, by the way, have anything to do with the return of CLL. They can happen in garden variety ITP, with no cancer as the driver.

There are special scans (heat damaged RBC or the old school liver-spleen scan) to look for the suspect tissue, though there is some controversy on which is the best method. Either needs to matched up to the CT.

A glance under the microscope is much easier, cheaper, and radiation free. It may reveal Howell-Jolly bodies, that shouldn't be there if the spleen or splenules are doing the job. I have Howell-jolly bodies.

None of this is 100% predictive.

One option is to do the special scan, see if the suspect areas on the CT light up, and if they do, consider a second and much more minor outpatient laparoscopic accessory splenectomy.

The success rate is quite variable, between a 0-66% success rate. I suspect it depends on the experience of the surgeon along with other factors, such as age. I can find no literature saying that response to first splenectomy is predictive. Or if the presence of Howell-Jolly bodies have any prognostic significance. Size of the splenules is not a factor. Seems 0.5 cm mini-organs can do yeoman's work and when they are removed the chance of a cure is the same as those with bigger born again organs. Response to IVIG does predict good results with primary splenectomy. By the time I had my primary splenectomy 2 and 1/2 years ago, I was no longer responding to IVIG. The operation didn't work. But I sure am responding well now to the infusions every 2 weeks.

That said, while IVIG is a not remitting therapy, it is getting the job done with little muss and fuss and I kind of like the idea of maybe having a mini-spleen protecting me against encapsulated cocci with flu and pneumonia season on the way.

So unless Kanti Rai tells me otherwise, no more video games to be played in my belly for a while. If I have splenules, they can relax for a spell.

I am not sure if my platelet count would be safe even without the IVIG (remember the fall had maybe stopped in the week in August prior to starting treatment), but I am not going to stop it and try to find out. IVIG is after all IMMUNE globulin. It does double duty, protecting me against all things infectious, so I am not taking any chances and am instead counting my dual blessings.

I am doing well, and plan to continue to do so for a long long time.

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3 Comments:

Blogger Judy Cleri said...

Hi Dr. K,

Sorry it's been so long since I have dropped a note, but things have been hectic around here....guess that is no different than 99% of the folks out there.

Glad to hear those numbers are staying up there. I love reading the posts with good news. Speaking fo the flu season I'm thinking of not getting it this year. Any thoughts on that? I will be seeing Dr. L first week of december for all my regular tests and hope to have decided by then.

Now, what in the worl is going on with our teams? Some of the worst hockey I have seen in quite some time. I know its the begging of a new season, but come on......the Ducks looked like they had no idea what they were supposed to be doing. and I don't thin you want me to say what I think about the KIngs.....LOL.....BUT forever and ever a true Ducks fan.......so as you know it's that time of the year.......when I must say.....

LET'S GO DUCKS!

J

October 6, 2009 at 8:50 AM  
Blogger michael said...

Hi Brian

I am glad to read your update, medically I am having trouble following but it sounds as though everything is at least stable giving you more time before any big decisions need to be made. That's good.
Love from Rainy Old London
Susan

October 6, 2009 at 10:12 AM  
Blogger Birdie said...

I am wondering what  Howell-Jolly bodies mean exactly in a test as they have shown up in mine.
thank you

August 1, 2015 at 3:34 PM  

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