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?
Be well,
Chaya
27 comments on "Doldrums"
Follow-up comment rss or Leave a TrackbackChaya,
We love the personal anecdotes about Harvey! We feel like we are getting to know him quite well, so please don’t stop. And, they are still incredibly informative. Since I am going to be going through a SCT in the near future, we have been printing and annotating your journal - it is an incredibly valuable exercise with all your references to various drugs, symptoms, etc. I find no omissions in your journal and hence nothing to correct.
We are grateful for your posts as you go through this stressful procedure and are very much indebted to you both. Thank you again for educating us all. You both are a shining light in this CLL tunnel.
Much thanks,
Robert and Hardip
Thanks Robert and Hardip. Harvey and I wish you all the best as you begin your own transplant journey.
Please be sure to write if there is anything we can do to help. A lovely lady who volunteered to help us with some chores voiced a concern - will we stay as involved in the CLL community after Harvey is truly cured of this awful cancer?
You can bet your bottom dollar we will!
Without this sword hanging on our heads we will be able to work that much harder. I have regretted not being able to travel and meet more of our CLL friends face to face. I have been invited to speak to patient groups and had to turn down the invitations - I did not want to be away from home and “Harvey”, and I did not want to drag him all over the country and risk getting infections.
With any luck, both of us will be around a long time - long enough to see CLL become a routinely CURED cancer.
Thanks for the Harvey update. I was wondering how Harvey’s transplant, or transplants in general, affect IL-1 levels in regard to fever? Would cord blood be different in expressing IL-1 because there were two different donors involved or because cord blood has unique structure not yet understood?
Is Harvey managing to put on any weight?
May the force be with you both.
Wayne, I do not know the answer to your questions about IL-1. I will try and find the answer for you.
As for Harvey’s weight, I am afraid it is still a bit of challenge for him. He says everything tastes awful and he really has to force himself to eat. The doc tells us this usually lasts 3 months or so, until the old taste buds killed by the chemotherapy grow back.
Dear Chaya and Harvey, we are glad you will be staying near the doctors for a while longer, Sedona is a long way! Best to both of you.
Chaya,
I too appreciate the personal tales. Your trailblazing is of immeasurable value of those of us a few months behind you in the journey.
Ironically, I named my post to my blog today “the best laid plans”. CLL has a way of humbling us all.
Be well. Stay strong
Brian bkoffman.blogspot.com
While the technology side of Harvey’s adventure is important, it’s the personal battles you two have endured which continuously attracts me to the Journal. There are definite medical reasons for you to stay at the U of M, but the beautiful June weather we have here in Minneapolis is an added incentive (except for the occasional brief, nasty storms like we had last night). I thought of you yesterday as my wife and I biked along the river and passed behind Fairview University Hospital . If any of us “locals” can be of any help, please let us know. You’ve done so much for all of us.
Dear Chaya and Harvey,
Thank you for sharing your personal updates. You have been through so much and still have that fantastic wit.
I am also planning to see CLL become a routine cured cancer.
Blessings,
Rita
Chaya & Harvey, we are so happy for you that Harvey your progress still is moving in the right direction! Doldrums can give us some time to stop, reflect, look and enjoy all that is around us! Use it to re-energize.
Thank you again for keeping us in your journey to health and well being!
Norm & Irene
Dear Chaya & Harvey,
This journal has been invaluable for those of us or our loved ones facing a SCT in the near future. We can read all the research articles; look at all the statistics; but nothing beats an account of personal experience. It gives us encouragement; it gives us hope that the CLL will be cured for Harvey—-and for my husband too.
Best wishes,
Marilyn
>>it is hard to write when there is no ‘hot’ news to report.
I’m glad to hear that no news is good news because, like everyone else, I get worried when I don’t hear anything. I hope Harvey’s appetite returns. The synthesized ‘aid’ may not be working but the ‘real thing’ seems to work pretty well, or so I hear. I’m so glad that the experts are watching over you.
I keep meeting people in cyberspace who read Clltopics as their main source of CLL information after dx and beyond. Thank you for all the wonderful hard work on our behalf. You are so truly appreciated.
Best wishes,
Elaine
I love your personal comments and please don’t stop. You are telling your story as it is and since cll is personal to a lot of us out here, we want the real story. It makes me feel closer to you. No one can really know al what you two are really going through but hearing what you have to tell us gives us a better idea of what some of us might be expecting.
I’m hoping the PET Scan comes up with CURE story. I will be awaiting your results. I can only speak for myself, but know your story is important. My prayers are with you.
Chaya & Harvey - What a gift you have given us in your chronicles of this journey! I’m 45, diagnosed with CLL almost 2 years ago, and although prognostic tests showed low risk, slow progression, this darned thing is trying to prove everyone wrong. Being proactive (and having a doctor who sees things my way), my siblings were all tested and my brother is a perfect HLA match. We just pre-harvested stem cells last Thursday and Friday. I thank you for sharing your stories with us, so that we have a glimpse of what may be down the road.
Not to worry about the lack of “hot” news. I’ve come to appreciate boring.
Praying for a truly unremarkable and boring PET scan!!
Chaya,
Thank you for sharing this tough journey with us. You’re not only a brilliant teacher, but you have brought us closer together as a community. We all need and want to hear the term cure enter our vocabulary. My thoughts and prayers are with you daily. Your courage and caring are good medicine for Harvey. He is blessed to have your love, comfort and strength.
Dear Chaya,
Doldrums are definitely to be preferred to crises! It seems very wise to me for you to stay here , even though you must be eager to get home. I’m very pleased (but not at all surprised) at your stated intention to keep on working for CLL patients.
Thank you-
Dear Chaya,
Without your trailblazing we would all be so very much less informed. Your journal has helped each of us experience your journey in a way that allows us to project what may be ahead for many of us. These are not letters from a distant planet. These are guide posts and valuable beyond any words. Thank you for your intelligence, for your courage and for your willingness to share a part of you that has certainly become a part of each of us. NCD
Dearest Chaya:
I can’t tell you how much your journal has helped me. You and “Harvey” are an inspiration. A day doesn’t go by that I don’t think about you both and pray that all turns out well. Thank you Chaya for all you do to help us and for just being you.
Warmest wishes,
Judy G
Hi, Chaya and Harvey — stoppin’ by to read your update on how things are going. Continued good healing! We, too, look forward to the day when we can say, not “endure”…but cure.
just a note to all in our predicament…when in hospital ALWAYS ask or demand a PICC line…it takes the misery and risk away from collapsed veins during prolonged IV use…PICCS ARE OUR FRIENDS!
I guess that doldrums are a whole lot better than many other forms of excitement when it comes to a transplant. I wish you and “Harvey” continued success and lack of excitement. Many thanks for sharing your story. I don’t post much, but I read your blog every few day. I’m sure that there are hundreds of others who do the same. You should know that those of us who write are the tip of the iceberg in terms of the number of people who you are helping. Thanks for continuing to share.
Chaya, “…. the man has a cast iron stomach”. Well, true enough, but did he ever tell you about the little incident that caused us to be ejected from the Super Bowl in 1988 by the security police? His stomach wasn’t so “cast iron” that day! Patty sends her regards to you both, as does everyone from your prior lives back East.
Reality TV has no appeal for me, but your Reality Blog (Harvey’s Journal) is a different story. Several weeks ago, when things were looking up a bit for Harvey but he was still facing many difficulties, I found reading your journal made me more anxious about Harvey’s well-being than I could tolerate. Until today, I didn’t tune in on the CLLTopics channel. Odd, since I was able to follow the truly unnerving events pre- and post-transplant without turning away. Perhaps the fact that, at least potentially, this was a shared reality finally sank in — and its weight was more than I was prepared for.
The truth is that, in some curious twist of human evolution, readers of the journal morph into members of your extended family. This may be a mixed blessing for you, if in this case the adage holds that ‘you can choose your friends but not your family.’ Nonetheless, here we are, camped out in the front yard and on the porch, earnest as can be and eager to wish you the best. Don’t you think that, once the word of our presence reaches the cells and micro-critters in Harvey’s body, they will all snap into formation and behave themselves, in the hope that we will all just leave? Any cell that was rational certainly would.
Thank you for your recent posts and “special thanks to Harvey,” [reads the citation] “without whose valiant efforts and intestinal fortitude (not just figurative) the Journal could not have been so inspiring and gripping.” (Stage direction: Brief round of applause.)
Woke up this morning thinking of the two of you and rooting for the home town boy, Go Seattle Slim! Wendy
Chaya, We do not mind that you are not doing the technical part of this journal that you had hoped to do. Personally, I want to hear what Harvey is going thru and cheer for his new immune system while at the same time learning a lot about stem cell transplants from your experiences. You should cut yourself some slack because you have always done so much for all of us with CLL, and you still are. Harvey is making progess and we are all rooting for him and you too.
Best,
Chris Randolph
dear chaya…glad to hear harvey is strong in mind and body…you need it with the tp. i had been hospitalized with fevers of unknown origin twice while in seattle during the 100+ post tp and once while home this past december. got out of the hospital with a known problem…staph bovus, which i can’t figure out where i picked up. they were concerned and i was a really sick patient for about 2 days till they got the fevers under control. never had such rigors before!!! fine now and all the concerns about the septicemia are resolved. cmv a little positive so on valgancyclovir and vfend and also on neoral and 60mg prednisone. i just started an oral pred wash to try to fix the taste and dry mouth . gvhd is + but not too disabling. it’s quite a trip…i’ll be back in seattle for my 1 year in july, but my anniversary is june 16th. whew!!!
Chaya,
I have read this paper twice, and it still gives me the “willies.” Harvey is a great trooper, and your effort to keep us informed is beyond the call of duty as you have your hands full with your day to day activities. I am more of a “lurker” than an an activit participant. I do read your entries as you publish them. I think the dialogue regarding Harvey’s “adventure” is critical to understanding what a patient may expect with a stem cell transplant, an alternative that at this time is the only way to effect a cure. I am where Harvey was several years ago (but considerably older-72) completing my first set of drug infusions (rituximab and Solu-Medrol) two months ago. The numbers have gone up a bit, and I understand that I can only go through this routine so many times, and then I will be faced with a major decision to “stay put” or move to a more aggressive approach such as a stem cell transplant. Your information is “gold” for me. Thank you very much for your effort, and continued progress for Harvey.
Barry
Dear Chaya,
I’m glad there is still nothing new to report, because mostly the new stuff is in the form of nasty surprises! The good stuff comes slow but steady. I hope you get to just hang in there now for the long haul of recovery.
Best wishes to you both,
Hal Lepoff
P.S. I continue to glean very useful and crucial information from the website. Thanks so much.