Thursday, March 12, 2009

Curve Balls & Roller Coaster Rides

diagnosis and confusion in '06;
roller coaster riding in '07 with new symptoms, strange maladies and an ever-growing list of specialists;

I got stronger and healthier in 2008 and along the way I shed my patient identity.

What is in store for me in 2009?

I had my 6-month CLL appointment with Dr. B today. I was not afraid; I had no misgivings about what the labs would show: since mid-2008, I have felt stronger and more energetic overall with the exception of a couple of nasty infections and a transitory fatigue this winter. I requested an ad hoc blood draw during the 6-month period between appointments when I began feeling fatigued and breathless and it lasted for several days: I was concerned the AIHA was returning but in fact my labs were fine.

Today, my labs were 'perfect' again and this is cause for celebration. The first defense against the AIHA was high-dose prednisone but in some cases, the AIHA is refractory to the pred and rituxin is brought in to finish the job. I was fortunate; the pred worked for me and the AIHA has not relapsed in two years.

With the news today, I do not need to return to Dr. B for a year. This is wonderful news after nearly three years in which I went from weekly blood draws and appointments that were slowly decreased to monthly. Then every other month, every 3 months, every 6 months.

But we still have unanswered questions and sometimes the CLL diagnosis seems a bit of a moving target and we wonder if:

  • Is the CLL really in remission?
  • Was the original bone marrow biopsy a clonal aberation that will never cause any difficulty ---- was it a "pre-cancerous" clone discovered through refined methods of early detection and because the initial questions of why my red blood cells were being prematurely killed off was not answered until the bone marrow biopsy showed that 'small clonal population of B cells'.

  • Is the CLL lying low, hiding out somewhere in the deep dark depths undetected by instruments?
  • Rare, spontaneous remissions have been noted in the literature and seem to occur in 1% of CLL cases, usually in Stage 1 or 2 and often in the absence of any prior treatment.
Near the end of the first year, when my blood work stabilized, I asked some of these questions to Dr Hamblin, who responded:

"You can have a monoclonal population of CLL-like cells in the bone marrow or the blood that is transient. But when it goes this does not mean it is not there, it is just below the level of detection. If I understand you correctly you had AIHA and at that time CLL was diagnosed. Treatment for the AIHA can induce a remission in the CLL. I have patients on my books who did just that, only for the CLL to become detectable again 7 years later."

I have been Coombs Positive for AIHA since 2006 but recently learned from David Arenson's blog that "Coombs Positive" is not a static situation. Indeed, his positive turned to negative after the AIHA made its last appearance. Today, my Coombs test show positive for AIHA again as it has since 2006. She said that like other autoimmune conditions (Behcet's for example) they can flare, they wax and wane. One can move in and out of Coombs Positivity. So the AIHA is still be a factor and could again pose a life-threatening re-appearance. But one doesn't know when, only if . . . . .
Earlier in my CLL/AIHA career, I had wondered about a link between CLL and other, non-hematologic autoimmune diseases like Behcet's and IBS/IBD. Dr. Hamblin conclusively says NO there is no link. Dr. B feels there may be a chicken and egg kind of relationship between autoimmune diseases and CLL but that it is not yet understood and the question: the dis-regulated immune system caused the CLL? or the CLL caused the dis-regulated immune system? has not yet been answered.

But for now, we celebrate!

And I sing the praises of two of Dartmouth Hitchcock's finest and having them on my team === Dr. B and Dr. R.


Michelle said...

Pat I am going to go with the good news here!!! 1 year lady!!! That is huge!!!

I don't much understand a lot of what you wrote after that i'm afraid!!!

All I retain in my brain is 1 YEAR!!!


Pat said...

Yes: one year. one year. one year. I am good to go......

debbiedoesraw said...

Pat, I have CLL, come see what I am doing..