Do Gold Fish Remember Day-to-Day?
Living in the transplant ward is a little bit like living in a gold fish bowl. There is a constant stream of people, doing the four hour vital check, changing the linen, bringing in and clearing out the food trays, changing the medications festooned on the infusion pole, docs doing their daily rounds, nurse practitioner coming by to check on things – at times it can get quite busy. The activity is fine during the day since it makes the hours go by, but it does interrupt sleep at night.
Harvey is doing great! Below is his latest WBC chart as of Day +9 after the cord blood transplant. For the first time since DAY ZERO his WBC is high enough for them to do a differential. Of the 0.8 WBC fully 0.6 are neutrophils. The remaining 0.2 are monocytes (which eventually grow up to become powerful immune system defenders called macrophages). No sign of B-cells or T-cells, which is to be expected after the massive doses of ATG that Harvey got as part of his preconditioning. I am happy to see no T-cells are present. At this early stage it is very unlikely to see graft T-cells and seeing host T-cells would cause me concern about the potential for the graft getting killed by the host immune system.
We won’t know until Day +21 whether all this activity in his bone marrow producing the precious neutrophils is from remnants of his own immune system stem cells hanging on despite all the preconditioning, or whether one or both of the baby cord blood cells has found a toe hold there and getting to work making neutrophils. Harvey gets a shot of Neupogen (GCSF) every night and this has a definite effect on encouraging formation of neutrophils. To answer the question Bruce had in the comments on the prior post, they do only one CBC every day at Fairview Hospital. I do not know if this the normal practice, whether they do more than one CBC per day for patients who are seen to be more at risk. Right now Harvey is literally in the pink of good health and therefore not in need of extra monitoring. He has just been complimented by the attending physician for having the best looking urine in the whole ward. I guess there is a first time for everything.
On Day +21 they will do a bone marrow biopsy and they will test the aspirate (as well as blood) for “chimerism“. The word comes from the Greek word chimera (as in centaurs for example – half man and half horse). In the case of stem cell transplant patients who have been fully engrafted, it means two different types of DNA coexisting in the same person. Harvey will keep his old DNA in the rest of his body, all his tissues will still have the same old DNA. But once fully engrafted his blood cells will have the DNA of whichever one of the two cords wins the battle. Since one of the cords came from a baby girl, he may well end up with the female double X chromosome pattern in his blood, while still maintaining the XY split in the rest of his body. It goes without saying I and our daughter are rooting for the baby girl to win the battle of the cords. So far researchers cannot predict ahead of time which cord will win and why. But the fight for survival happens even at this level, the winning cord inevitably destroys the loser.
For the first time today the docs started talking of possible discharge from the hospital. They look for general signs of good health, and neutrophil counts above the danger level for several days and holding. They also look for ability to switch the patient from intravenous medications to oral pills. This is not a trivial issue. Patients with oral mucositis have a very hard time swallowing anything, let alone the fist fulls of huge pills that seem to be the norm.
Once again, Harvey is acing the test on this front. He has not developed any mucositis at all. I give full credit to his diligent mouth cleaning. After each meal he rinses with saline solution, uses the little sponge tipped sticks to clean out his teeth, gums and as much of the insides of his mouth as he can reach. He also uses a medicated rinse (Nystatin) which tastes foul but seems to do the job of keeping his mouth clean. It also helped that he had been extra vigilant about dental care in the years leading up to this. No unfilled cavities, no infections, regular cleaning and check-ups to remove any plaque as soon as it raised its ugly head. Oral health is hugely important in maintaining general good health. Did you know untreated / uncontrolled inflammation of the gums is a significant risk factor for inflammation elsewhere, as in inflammation of the heart muscle? If a transplant is in your future, it is very important that you get religion when it comes to oral and dental hygiene.
Once sprung from the hospital, patients are allowed to live close by in apartments. Ours is a scant couple of blocks from the hospital and transplant clinic. We can easily walk from our home-away-from-home to the clinic each day – something that is mandated for follow-up care. The weather today in Minneapolis is positively balmy! Harvey will walk out of the hospital into full blown spring weather.
Whether Harvey gets discharged from the hospital sooner or later seems to depend pretty much on the personal tastes of the attending physician. These guys rotate every couple of weeks and it is very much a case of you get who ever happens to be on call for that particular week. Our “admitting physician” is Dr. Dan Weisdorf, a highly regarded cord blood transplant expert and head of the adult BMT program here. But barring a very short social visit of a couple of minutes on the first day, we have not seen or heard from him at all. That has been a bit of a disappointment, I will confess, but we will survive. The day-to-day decisions on treatment are made by the attending physician and the nurse practitioner who happen to be on call at that time. As you would expect, there is a spread in the professional and interpersonal skills of the physicians on the roster and the best you can do is hope that a good one happens to be on call when / if there is a crisis. Perhaps VIP patients and really sick ones may rate more direct access to their admitting expert physicians and experts, I am not really sure how their procedures work on that front. Harvey is not a VIP and he definitely is not among the sicker patients.
There are a few side effects of all the drugs he has had and some that he continues to have. For example, his heart rate is higher than it used to be. After years of healthy living and regular exercise, Harvey had the resting heart rate of a much younger man, usually around 70 beats per minute. Now his heart rate is more often at 90 or higher. His blood pressure is a bit higher as well. Both of these are generally attributable to the cyclosporine he is given. CSA (cyclosporine A) is heavily used in transplant patients (solid organ transplants as well as hematopoietic stem cell transplants) as a way of preventing graft rejection. It and MMF (Mycophenolate Mofetil) are the two stalwarts this center depends on for preventing graft rejection. Harvey will be on MMF for the first 30 days or so, but the CSA will continue for 6 months or more. They monitor the blood plasma levels of CSA and gradually taper it off as indicated.
Harvey’s heart and lungs are strong and therefore he is well able to tolerate the additional stress put on them by all these drugs. His creatinine (kidney function), AST and ALT (liver function) are right in the middle of the healthy range. Once again I am struck by how much of a difference it makes that the patient gets to the transplant center while he / she is still in relatively good physical condition. Harvey is now exercising twice a day, putting his in-room treadmill to good use.
We discussed some of the pros and cons of elective versus salvage transplants in an earlier article (Catch 22) on our website. “Richard”, the hero of that article, is in the process of initiating his own stem cell transplant at M. D. Anderson. In his case, the donor is a perfectly matched unrelated adult donor, a MUD transplant. Richard too is a young man who is an athlete and otherwise in good health, but hit with aggressive CLL with poor prognostics at a young age. Will Richard and Harvey give more of our patient community reason to consider elective transplants rather than wait until the bitter end and hope a salvage transplant will do the job? Only time will tell and each patient has to make decisions that are right for him or her. I am seeing the beginning of a trend however, more and more CLL experts are recommending mini allo transplants to their patients with aggressive CLL and poor prognostics (as in unmutated IgVH and 17p (p53) deletions detected by FISH testing).
All of us have to play the cards we have been dealt, there is no choice on that front. But if there is any chance at all that you can improve your odds by getting into good shape ahead of time, I strongly urge you to make the effort. Sometimes it seems like an uphill struggle, but every inch gained in that climb up will have huge benefit when you face the not quite so “kinder and gentler” mini-allo transplant procedure. Surely it makes a difference to walk into this fight prepared, at a time of your choosing, with all your resources mobilized?
What do you think?