Marking Time Is Hard To Do
Did I tell you Harvey and I are both “Type A” personalities and patience is not in our list of skills mastered?
Day + 43 after the double cord blood transplant, we can say with greater confidence that the “Seattle Slim” baby boy cord is now more strongly entrenched. Last time we reported on the engraftment business, the breakdown was 50% for Seattle Slim, 30% for Carolina Lady 20% for good ol’ Harvey. Latest counts as of a week ago Seattle Slim is now in charge to the tune of 80%. Harvey and Carolina Lady are mere minority players at roughly 10% each.
I am also happy to report that Slim seems to have learnt the trick of making platelets. We are seeing gradual improvement in platelet counts, even though the last platelet infusion Harvey got was 13 days ago. As you may recall from an earlier post, platelet production is among the last skills learned by newly engrafted cord blood stem cells.
But I wish Slim was a little better at fighting infections, learning this skill a little sooner. Harvey is being treated for possible CMV reactivation (that is the only virus titer that went above the baseline, the only bug that tested “positive” thus far) with the standard therapy of gancyclovir. And indeed, the CMV titers are gradually falling in the blood, as one would expect.
But what we are not seeing is much of an improvement on the daily fevers. Every time the temperature spike is too high for comfort, they start him on yet another round of broad spectrum multiple antibiotics (Vancomycin, Ceftazidime this last time around) - so far this shotgun approach has produced few results. Harvey continues to get fever almost everyday - sometimes as high as 103. You can bet it scares me silly. The daily ordeal is also taking its toll on Harvey’s sense of well-being. It has been going on for weeks now!
The hardest thing to accept is that we are no closer to a definitive answer and therefore a game plan that we hope will take care of the problem once and for all. Once again, I am reminded that we are no where close to considering this or any other transplant protocol a slam dunk, a piece of cake for the patients and their families.
I have been pushing for a while that Harvey get IVIG (intravenous immunoglobulin) therapy, as another broad spectrum approach to controlling or eradicating whatever unknown bug (in addition to CMV) that may be ailing him. The experts finally agreed this is probably a sensible thing to do. Starting tomorrow, Harvey gets hefty dose of 500mg/kg of IVIG every week. Please wish him luck, we are hoping this new shot gun will kill anything that survived the intravenous antibiotic barrage.
Once again, I wish I had only positive and encouraging news to report. But in the absence of that, the best I can do is report the truth.
Be well,
Chaya
32 comments on "Going No Where Fast"
Follow-up comment rss or Leave a TrackbackI am glad that you are reporting the truth. Most Drs. tend to side step the very important and risky subject of healing from a transplant. I have been waiting for news from you and I am just so relieved to see this latest post. Hang in there and I will be just one of a great many sending positive thoughts to Harvey and his journey with a new immune system.
The fact that there is no wonderful, agreed-upon therapy for CLL is one of the frustrating things about this disease. I know you pride yourself on making a decision and sticking to it; but all of us feel all the time the feeling that you mention on this post-that it’s frustrating not to know the best course to follow.
BTW, who said CLL was the ‘good cancer’???
CLL is not a disease for the Type A personality and neither are transplants, it seems. Here’s hoping the IVIG works wonders and that the only fever Harvey is left with is cabin fever!
If you both weren’t type A personalities, CLL Topics likely would not exist and so much benefit might have been lost to the world. That said, I certainly hope that things are soon more “normal’. It is no comparison, but I had 12 straight days of fevers,chills and anorexia during my therapy and for an additional 10 to 14 days never felt warm (it was wintertime), so I do have some appreciation of how awful PC must feel. You both must be getting pretty exhausted, but I am confident that you will get a second wind and beat these demons. because of the multiple courses of antibiotics I hope that use of probiotics (if ok with the transplant doctors) has been considered.
All the best, DWCLL
Chaya, I’m sorry Harvey is having all these fevers, but so glad that Seattle Slim is otherwise doing his job. Did you know that sometimes fevers are due to a drug reaction? Something to consider, given all the meds he’s on. Hang in there, and know that a huge number of good folks are carrying you around in their hearts. Big hugs to you both.
Sherry Gardner
Thanks for the update. There are lots of people out here pulling for you and wishing you a speedy recovery.
Warm Regards,
Jon
Chaya, You and Harvey hang in there … all of your many friends from NJ are thinking good thoughts for both of you! Patti sends her best regards!
We keep checking the web site daily. Hope the IVIG will work as you predict & the fevers will be gone finally. Keep a stiff upper lip-we know Harvey is going to win with Seattle Slim. You stay well also
Lots of love,
A & A
I will pray that the IVIG is JUST “what the doctor ordered” for Harvey and his daily fevers are a thing of the past! Thank you for sharing “Harveys” journey Chaya. You GO Seattle Slim :)Eileen
In another week you will be half way to the 100 day mark. IMHO “Harvey” is doing very well - all things considered. He’s well engrafted with few major complications. Keep clicking off those days on the calendar and you will breeze by the first year before you know what happened. Scary times I know, but he really is doing extremely well for this stage of the game!
Our fingers are crossed for Harvey to get over this scary hurdle and on to restorative good health. The platelets are a good sign that the positive forces still have the upper hand. Keeping our cyber vigil.
We are all still with both of you, as you can see from all these postings. Yes, we hope and pray the IVIG does the trick…may Harvey feel better fast…such a roller coaster but there is some good news in there, too, and we are focusing our thoughts on that. Love and healing to you both.
Do you have any idea how much your candor and explanations help all of us? I’m going to vote to have you canonized.
Good luck w/ the IVIG - My gut tells me everything is going to work out.
Now hurry up and wait!
Peace
My prayers are with you both for slow, boring days, when the rough road becomes smooth and Harvey is finally on the way to cure. One day, when you look back on this blog, you will know you have helped each and every one of us maneuver through the complexities and uncertainties we all live with. Glod bless you both for your courage and perseverance. You are a beacon in the fog.
Chaya:
Most medical adventures reinforce two of my attitudes: Nothing is simple and Nobody REALLY knows what is going on. Which is why we need brave, straight forward and capable people like you to keep the pressure on. Your journal is very enlightening. This experience ought to resolve itself well but in the meantime it is draining and painful for you both.
Best wishes,
Diane
Chaya,
Thank you so much for being here for all of us. Know that we are all there with you and Harvey, every day. Take good care of yourself while taking care of Harvey.
Kathryn
We’ve been traveling for family events and are just now catching up on the recent postings. What a roller-coaster ride for you both. Hang in there-and thanks for all the valuable information you’ve been sending to all of us who may be heading down the same path someday.
All the best,
Jim in Minneapolis
Dearest Friends,
As per usual my thoughts, love and prayers continue with you. Pretty soon those pesky fevers will just be a memory. This too shall pass. You are on your way to your new life. It is wonderful to read it happening. The good so outweighs the bad, even though the fevers must be frustrating, you are ON THE WAY. The days will just get better and better! xoxoxoo Nancy
Good luck on responding well to the IVIG.
I’m curious about the use of probiotics as the “Doctor with CLL” suggested. When I asked doctors at two different centers about using them after heavy anti-biotic regimens, they were against it as not really being neccesary and possibly dangerous, but didn’t really seem to know much about it.
I am learning so much from your journal and really appreciate your efforts throughout this very difficult time.
Sincere thanks and best wishes,
Hal Lepoff
I’ll try to answer the above question. Please understand that I’m uncertain how those treating post-transplant patients feel and I would heed their advice in specific situations.
Probiotics are lyophiliized (ie, freeze-dried) bacteria which when ingested on a regular basis “come to life” within our intestines and alter the dynamics that occur there with other potentially harmful bacterai. Normally there are more bacterial cells in our intestinal tact (mainly the colon) than there are cells in our body (the intestinal tract, technically, is external to the body…ah the great outdoors!).
The role that intestinal bacteria play in many diseases (both those of the gastrointestinal tract as well as systemic diseases) is not fully understood, but continues to grow by leaps and bounds. The role that such bacteria play in iniating normal and abnormal immune responses and inflammatory responses is only just being learned, but is proving to be quite important.
Many of my patients with gastrointestinal symptoms seem to have benefitted greatly from their use, and, apart from a few people who note “gas” or other minor side effects, they seem to be fairly safe (though, again, I can comment on their safety in patients in the early days post SCT).
Probiotics usually contain one or more strains of lactobacilli (some are more beneficial than others), streptococcal species and bifidobacterium. PLEASE UNDERSTAND, WE ARE TALKING ABOUT INGESTING BACTERIA, NOT ANTIBIOTICS.
They work by altering the environment within the colon, hopefully competing with “bad” bacteria. In this manner they can alter the populace of the colon, hopefully with a favorable outcome.
I have taken them religiously for several years on a daily basis, including during the time of my recent therapy for CLL.
My personal and professional experience has been good. The particular brand that I find most likely to work and quite easy to take is available without any prescription and is called FLORA Q (no, I’m not a shill for the company or a shareholder). Really this is like taking yogurt (which I also do), but a bit more likely to deliver the desired bacteria.
I hope that wasn’t too long and was helpful,
DWCLL
As always Chaya and “Harvey” you are in our thoughts and prayers. I echo tpo444′s comment that your postings are a lifeline to those of us fighting the CLL battle. I cannot imagine how we would have gotten this far without you both. Many hugs,
Penny
Hang in there Harvey. We are pulling for you.
Here’s hoping, and praying, that the IVIG therapy will help.
I am struck by the similarities of “Harvey” and taking a young baby to the doctor for an earache and having the doctor say there is nothing to be done but to go home and let the virus run its course - easy for them to say as they are not staying up all night with child as they scream and cry with discomfort. I found this hard to take as a young parent. I am re-experiencing this frustration again with my CLL as my temp rises 2 degrees above normal each day and anti-biotics have not made any difference at all. Following along with the baby analogy and “Seattle Slim” I am so amazed that within 43 days of engraftment “Seattle Slim” is already 80% in charge, Wow! That is simply dramatic growth. Given that babies seem to take a while to develop immunities to their environment I am wondering if this process is in anyway relevant to the development of engrafted cord cells. My wife and I consider you and “Harvey” to be courageous pioneers and we gratefully hang on your every word.
Good luck on the IVIG infusions. You have lots of friends out here cheering you on. Look at what you have brought together in our same quest. Hoping for the best. You deserve it.
Thank you for the detailed and frank update on Harvey. I think of the two of you daily.
The IVIG infusions are a very good idea - I’ve had monthly infustions since last July with no side effects, and most importantly few other problems - “knock on wood”.
Harvey can be thankful he has a great “care giver” - oh so important under these conditions.
Dear Chaya and Harvey, I hope by now the IVIG and other treatments are working and the fevers are down. Your courage and honesty are truly amazing and such a blessing to those of us dealing with this most mysterious disease. Sending you lots of healing energy.
Alex
Hi Chaya:
I have been crazy busy with an aunt dying in Chicago and my daughter graduating from her Master’s Program in LA. So today I checked on you and Harvey. I am praying that things are on the upswing. I am relieved that there are always things that can be done, things that can make this work. Blessings on both of you,
Beth and John
Chaya,
Stay strong
Brian
Have been regularly checking your postings and like everyone else I have been rooting for Harvey and Serena. It is now two years since we met in the UK (you might remember me as the ‘R-CHOP’ lady). You both inspired me then and continue to do so as I contemplate my options after relapsing last year (5 rounds of FC). Love and best, best wishes to both of you.
Jaqui
Chaya & Harvey
thank you for giveing ,so many hope ..Everyone is praying for you both.
love
ondrea
Hadn’t noticed those type “A” personalities:)
Thank you for the updates. It helps us to know what pieces of your journey we need to keep close, especially the part about maintaining your “well being” in the middle of all ups and downs. I can’t imagine how it all feels. You both continue in my thoughts each day.
Dig deep Chaya and please give PC my love. Wendy