Best Laid Plans of Mice and Men
I had very different expectations for this Journal when I got started. It was going to be a terrific educational tool for our patient community, with lots of useful links, reviews and literature references. Harvey’s personal story was going to be used only to illustrate points that I wanted to make about the technology of stem cell transplants.
As it turned out, this has become much more of personal record of our transplant journey – mostly because I have not had much time or tranquility of mind to do a lot of reading of the latest articles in “Blood” etc. But I must also confess that the human warmth expressed in so many of your feedback emails has also seduced me into writing more about Harvey and less about the technology. This is an omission that I hope to correct at the earliest opportunity.
When the Adrenaline Rush is Gone
I have not written for a few days because there is nothing new to report. The pesky fevers are gradually coming under control, but not as quickly as I and Harvey would wish. Latest CMV viral count in the blood has come back “negative”. There is no trace of the virus in Harvey’s blood. It has been more than a month since Harvey needed platelet transfusion and more than several weeks since the last red blood cell transfusion. I doubt he will need either of these transfusions in the future, Seattle Slim seems to be up to the job of making his own platelets and red blood cells. Harvey has now been weaned off of all the intravenous drugs, even the intravenous ganciclovir has been changed to valganciclovir, the oral version of the drug. Harvey will be on this anti-viral for another six weeks, that is how seriously they take CMV infection and therefore their desire to make sure the virus is fully and totally nuked.
Which brings us to the important question: what are we still doing here? Why are we not going home to Sedona tomorrow?
Prudence is the Better Part of Valor
Several good reasons for sticking around here a little longer, I am afraid. Harvey has yet to defeat the daily fevers completely. They no longer get to the spectacular highs of a few weeks back, but he does still get a fever once in a while – especially right after he has had a GCSF (Neupogen) shot to boost neutrophil counts. He still needs daily prednisone to keep a steady keel. They still do not know what is causing the fevers, now that they have totally ruled out every possible infection known to medicine. Is it GVHD? Is it some funky version of “engraftment syndrome”? Until the experts feel more comfortable that they have a handle on what is going on, they are reluctant to let us out of their sight. Frankly, I am just as happy to have access to their expertise for a little while longer. I am told most transplant patients and their caregivers develop “separation anxiety” when told to go home.
Harvey is still on pretty high dose of Gengraf (cyclosporine). According to the clinical trial protocol this will continue for 100 days post transplant (we are now at Day +67 since the transplant) and then gradually decreased for another three months – provided there is no GVHD. If all goes well, Harvey will be off of cyclosporine at the end of 6 months. As we know, GVHD is one of the most perilous and nasty side effects of stem cell transplants. Gengraf is the major defense against GVHD getting established in any big way. This immune suppressant keeps the new immune system under strict curfew as it were, waiting until we are reasonably sure Slim is past his unruly teenage angst and not likely to go on a vandalism rampage. Other institutions use other drugs to do the same thing – tacrolimus (“Prograf”) is popular at M. D. Anderson I understand.
Full dose Gengraf as well as the high dose valganciclovir because of Harvey’s short flirtation with CMV infection means there is still significant drug load on Harvey’s liver and kidneys. We are fortunate that Harvey came into the transplant in the pink of health where liver and kidney function are concerned. But all the drugs he has had to tolerate has put a strain on his kidneys (slightly elevated creatinine level) and they they want to be sure this is a transient phenomenon. Let me hasten to assure you, the elevation is just over the healthy range and most often drops right down to a normal level when Harvey pays attention to staying very well hydrated (or he gets a bag of saline through the spanking new PICC line in his upper arm). Liver function parameters (AST, ALT) blip up when the docs change one or more of drug dosages, then recover a couple of days later. Bilirubin, another much watched parameter, has stayed rock steady.
What Do the Experts Look For in Diagnosing GVHD?
The University of Minnesota protocol has pretty strict definition of what constitutes GVHD. Typically, graft-versus-host-disease shows its ugly self in either the skin, liver or GI tract. Below are the expected symptoms / clinical lab results for GVHD at these three locations, graded from I (easy) through IV (really tough).
Lets see how Harvey’s experience stacks up on this basis.
- Yes, he had a bit of red rash on the backs of his hands, arms, and legs. The rash looked pretty good for a few days, then quietly disappeared. A punch biopsy of the skin at the site of the rash was not quite conclusive, even though the pathology report said it could be consistent with GVHD. The rash certainly did not cover anywhere close to 25% of Harvey’s body – I would guess it was not more than 5% of his body. Is this enough to classify this as Grade I skin GVHD? The experts do not think so.
- Liver GVHD is out of the question. Harvey’s total bilirubin counts have stayed stubbornly in the healthy range.
- As for GI tract GVHD, the main symptom of this is substantial and sustained diarrhea. Possibly because Harvey has been very good about getting his probiotics via daily yogurt snack, he has not had any diarrhea to speak of, certainly not on a daily basis. In fact, the magnesium pills he has to take daily are just enough to counterbalance a touch of constipation courtesy of cyclosporine. What can I say, the man has a healthy gut.
I guess we should be grateful for small mercies – GVHD is not a fun thing to have. Bottom line, there has been precious little going on besides the mystery fevers and it is hard to write when there is no ‘hot’ news to report.
Next week Harvey gets a PET scan to fully stage his CLL (or lack thereof!). I am keeping my fingers crossed that Slim has been doing his job and killing each and every CLL cell that he can find in Harvey’s body. Soon as I hear the results, I will be sure to let you know. After all, that is the point of going through all the pain and hassle of a stem cell transplant – to CURE this ‘incurable’ cancer – right?