Partial Remission: The Details

We finally got back from our doctor's visit this morning. What we learned is that all of John's lymph nodes have been reduced. But there are quite a few "stubborn" nodes that are still fairly large. One of them is still 5 cm in size even after six cycles of chemo! Ugh. Normal is less than 1 cm. So, obviously, this was not the outcome we were hoping for at the onset of treatment. However, even though he did not achieve a complete remission, he did get a good response and a partial remission. At least he did not fail treatment (which is a possibility and one that caused me a lot of concern prior to FCR). Now it is just a matter of how long he stays in remission. A new period of wait and see begins...

As a well informed caregiver, I had read many scenarios prior to proceeding with treatment. I knew that there were a few patients who totally failed FCR or were what is called FCR Refractory (patients who do not respond to FCR). I worried a lot about John suffering the toxic effects of chemo and not getting any results in his nodes. That was one of the reasons I felt apprehensive about when to start chemo. I've learned how stubborn lymph nodes can be and that they are often quite challenging to treat effectively. I have known since I first began my study of CLL that treating it is an art and a lot of educated guesswork. You never know how any one patient is going to progress or respond to treatment in advance. There are prognostic markers and indicators suggesting who will do well or do poorly, but even in those categories there is a lot of variation.

I knew Dr. Flinn could not make any guarantees about how well FCR would work on John and that even if the majority of patients get great remissions, there is a percentage of patients who do not. I have worried and worried about this since diagnosis. For the best outcome and the longest survival, the timing of treatment is critical. You don't want to treat before it is absolutely necessary and you don't want to wait until your CLL is out of control (because then you will potentially have a poorer response). The timing of treatment and decisions regarding John's treatment (what and when) have been major stressers for me because I'm the one who has invested so much time learning the ramifications. I tried to share these concerns with John and others in a way that would not seem pessimistic on my part, just realistic. It's a fine line between sharing enough information with your patient/spouse (who is not reading for himself) to enable him to make informed decisions, yet not feel like you are trying to scare him or predict worst case scenarios. I have also learned when dealing with cancer that most of your friends and family have such a desire to be positive (and hear positive results) that it's hard to share the realism you face without feeling like you're possibly being perceived as negative or, in a spiritual sense, lacking in faith. I really do believe that is partly why I prefer to update everyone on my blog all at once. I would just rather not have to verbalize disappointing news repeatedly. If John were in complete remission, I would love to make 100 phone calls to share the news! But when the news is that he feels bad or the lymph nodes are still there, it's just hard to have to say that many times over. It makes me more emotional about it.

As far as the timing issue goes, I feel like we timed treatment just about as perfectly as humanly possible in John's case. I'm certain we didn't wait too long because his bone marrow is in such great shape and it would be far more compromised if we had waited too long. I used to worry about treating him too soon, before he really had to be treated with the "big guns" of chemo and suffer its toxicity. At this point, I don't have any question marks in my mind about whether we should have waited a little longer. This was probably the ideal time because the strength of John's marrow (which will be more compromised in the future) was so resilient this time. The treatment has made him feel bad, but it has not destroyed his immune system like it could have.

Dr. Flinn said this morning that he's amazed at how well John's blood has bounced back after each cycle of treatment. Some patients have to stop at four cycles because their blood cannot rebound sufficiently from the "poison" to undergo the full six cycles. But John rebounded quickly every time, including this last time. His white count was still low today (4.2), but it was 1.5 two weeks ago (dangerously low). His neutrophils have gone from 0.3 to 3.1 (low normal). His bone marrow is producing and replenishing the healthy cells that have been killed by chemo. Obviously, John's marrow is doing its job well. That's something to be very thankful for.

What now? Dr. Flinn said that he would be happy if John stayed in this remission for three years. So I took that to mean three years would be "best case scenario." He told us he expects the nodes to continue shrinking for a while. When they will start to grow again is an unknown even for him. What kind of treatment we do next will depend on the duration of his response to this treatment. If John gets three years from this, Dr. Flinn would consider FCR again. If John's CLL starts to progress in six months to a year, we will be talking about stem cell transplant. If he gets one to two years, we would probably want to try a different drug therapy that works through a different pathway than FCR. One thing we did learn this morning is that the clinical study John has been participating in has been closed. The experimental drug, lumiliximab, has not improved response rates or increased the duration of remissions sufficiently to advocate its use or to show promise in being approved by the FDA. It did show some additional benefit, but not enough. So John will not have to continue giving vials and vials of blood, nor will he have to undergo additional scans for the sake of the study.

We do not have to return to the doctor's office for three months. And Dr. Flinn said that as long as the kids are not sick, John can be around them again! So my sweet little munchkins can come spend the night at Camp Howerton next week!


Deb Light said…
Although not the perfect outcome,still a good outcome.Let's pray it will last at least two or three years and by then they will have another great option.Thanks for posting John's results.He is very Blessed to have you for his primary Caregiver!

Thoughts & Prayers,
Deb Light
Shari said…
Thanks, Deb. I actually feel optimistic and thankful for the "intermission" - as John Wagner describes it. It was funny we drove home. At one point John said, "Even Dr. Flinn has no idea what's going to happen. It's not like he really told us anything other than we'll just have to wait and see what happens next." And I said, "That is what I've been trying to tell you for the last couple of years." Even if he had gotten a complete remission, we wouldn't have had any idea how long it would last. Welcome to God's hands. It's really where we all are...with or without a diagnosis...whether we know it or not.
Danny Bryant said…
we'll have the boys start walking today!

thanks for the update, mom. we're praying for you guys.
Michael Geiser said…

I am always a glass half full kind of guy, and I see the news as God saying"Just keep on trusting me". I think that these crosses that God gives us are just His way of letting us know his will. Your blog entry had a lot more positives than negatives in my opinion, so just keep trusting in Him, and knowing that He has everything under control, no matter what!

God Bless you both, and enjoy Camp Howerton!
All our Love,
Shari said…
Yes, definitely more positives than negatives. That is how I feel and I'm glad you read it that way. Sometimes I am concerned that by sharing all the details I might sound "down." But I'm not. We love you too!

As always, we are very thankful for all the prayers. said…
Shari: Praise God for the partial remission, we are all happy for you and John. Remember even a small miracle is still a miracle. And, who knows, maybe they'll continue to shrink, or will after another round. To quote Deb, John is fortunateto have you as his caregiver. Praying for complete recovery. Love In Christ: Larry&Deanna
Brittany Wilson said…
Thanks for keeping me updated, Shari. Let's hope John stays in partial remission for the full three years. Both of you will remain in my prayers. Love to the both of you! By the way, are you taking applications for Camp Howerton? I have three very active boys I'd LOVE to send, LOL. Enjoy the time with your grandbabies.

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