Mini-Allo Stem Cell Transplants
Imagine if you are 75 years old, newly diagnosed with CLL. And your oncologist told you that based on your prognostic indicators you have a life expectancy of 10 years or so. NOT quite the death sentence, is it? If indeed your oncologist’s crystal ball is perfectly clear and his guesstimate of how long you have to live is bang on target (between you and me, I would take such pronouncements with a very large pinch of salt - but then, I am a recently minted cynic) and you live to the ripe old age of 85, what is not to like? The only guarantee we have is that each and every one of us will eventually die. 85 is not a shabby number of years to have spent in this world.
Now flip the scenario on its head. What if you are in your early forties or fifties, with a whole lot of things to do and a lot of life to live? What if the same incredibly wise oncologist read the tea-leaves and gave you a ten year life expectancy? Aha. There is the rub. Dying before you can even hope to retire, dying before you get to see your children / grandchildren grow up, dying before you have a chance to do all the zillion things you told yourself you will do one day - now that has all the makings of a real tragedy. CLL is definitely not a good cancer in this scenario.
Let us be very blunt. As of today, we do not have a strictly curative drug therapy for CLL. Curative as in really, truly curing you of CLL, once and for all. Guys, that is why they call it an incurable cancer. The only hope of curing CLL lies in something a lot more complicated than “simple” (duh!) drug therapies. We are of course talking of a mini-allo stem cell transplant, where your buggy, cancerous immune system is yanked out by its roots, tossed into the garbage, and replaced by healthy stem cells from a well matched and willing donor. The hope is that the new immune system will like its new home, grow roots and settle down, and start making all the various cells of your blood and immune function that will keep you alive for the rest of your natural life expectancy. Since the new immune system is not corrupted by cancer, it has no love lost for CLL cells. The new T-cells, neutrophils, macrophages etc go on a killing rampage, hunting down and killing any CLL cells lurking in your body with no mercy. This is what we call “Graft-versus-Leukemia“, the magic that makes it possible for us to hope for a complete - and I mean complete - CURE.
Unfortunately, mini-allo stem cell transplants are anything but simple procedures. There are many hurdles along the way. First, there is the little problem of finding yourself a perfectly matched and willing adult donor. Not as easy as you would think, if your parents forgot to give you lots of siblings since this is the first place you would look for a matched donor. If you are also an ethnic minority not well represented in the volunteer stem cell donor banks, your chances of finding a matched unrelated donor (“MUD”) are slim to zero. I know all about that. My husband PC was one such. My man was undoubtedly one of a kind, but I thought he took this business of being unique a little too far. We could not find a single matched adult donor for him in all the donor banks in the world. In his case the only option was to use stem cells for umbilical cord blood - an experimental procedure with still high chances of mortality. You can read all about his transplant journey in Harvey’s Journal. Make sure you are feeling strong before you read it. I promised the truth and the whole truth when I started that journal, and I spare no detail of the roller coaster emotional ride. I can no longer bear to visit that journal.
Last but by no means least, is the toxicity inherent in stem cell transplants. True, “mini” allo transplants have reduced the mortality risk significantly, which is why they are considered kinder and gentler stem cell transplants, compared to the bad old days of full myeloablative stem cell transplants. But another aspect of transplant morbidity still plagues us. Graft-versus-Host Disease (GVHD) is the single biggest cause of sickness and death in post transplant patients. In a nutshell, the new immune system is not quite used to its new home and cannot tell the difference between friend and foe. Perfectly healthy cells (such as the cells of your skin, liver, or any other part of your body) can be attacked. The picture is not pretty. In an attempt to damp down this over-the-top immune function, transplant patients are frequently on immune suppressant drugs for quite long time. The other side of trying to control GVHD is that the patient is left vulnerable to opportunistic infections. If it is not one thing, it is another.
So, transplant decisions are not easy ones to make. I try to steer younger patients with high risk disease towards transplants, since they do not really have much of a chance of running out the clock by piece-meal and sequential therapy choices. In high risk cases, all the bullets available are spent too soon for comfort and the patient faces massive loss in both quality and quantity of life. There is a school of thought that if a transplant is the way to go, it may be a good idea not to wait until the last bitter moment before making that decision. You may run out of options, if you cut it too close. Also, your body may no longer be able to handle the tough ride of a transplant, after going through every CLL drug therapy known to man. Some day, transplants may get so safe that the decision can be made with less angst. Or, newer and truly curative drugs may be discovered that make stem cell transplants unnecessary. We can hope. But we are not there, yet.
With that rather wordy preamble, please allow me introduce you to Jane. “Jane” is not her real name, we try our best to protect the privacy of our members. “Harvey” was my husband’s pseudonym while he was alive, a salute to Jimmy Stewart’s wonderful movie of that title. His privacy as a patient does not seem as important now, since he passed away - almost four years ago. “Jane” and I exchanged several emails, a couple of which are reproduced below to set the stage. The story that follows is in Jane’s own words. She tells me this is her “donation” to the cause, sharing her experiences so that others may learn from them. I cannot think of a more generous gift. I have kept my cotton pickin’ mitts off of her story, so that you can hear her “voice” and not mine. Please join me in giving her a nice hand of applause.
Since we are talking of happy endings, here is a totally unrelated happy ending of my own. After suffering acute dog-withdrawal when my beloved Aussie Jasper passed away a couple of months ago, I accepted I was hopelessly addicted to dogs and got myself another Aussie. Please say hello to “Buddy“, the new love of my life. He is 11 weeks old, all energy and no sense, a one-puppy wrecking crew. I could not be happier.
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Dear Chaya,
I still have this note you sent me two years ago, because I was so impressed with your gracious response. I did ultimately pursue the recommendation to undergo a stem cell transplant, which is why I am writing to you now.
Prior to and during the stem cell transplant process, I relied almost exclusively on the clltopics website (and my doctors at Mayo, of course) for learning everything I could. I purposely stayed away from the acor list and blogs because I really didn’t want any more detail on how miserable I could be, and it is human nature to want to write more about about the negatives.
Since I relied so heavily on clltopics for information, it was scary for me that while there were statistics from articles on good outcomes from sct, the only outcomes that are chronicled are tragic ones.If you think it would be appropriate and could be helpful, I would be happy to provide you with my journal about my sct process (attached) on clltopics. I am very aware that each person’s situation is unique, and I would be representative of only myself. I am also very aware that at only 15 months post-transplant, I am by no means “out of the woods”. But if you think it could be helpful, feel free to use this as another case study, but with a positive outcome.
Whether you choose to use this or not is certainly up to you, and my feelings won’t be hurt if you don’t. If nothing else, I hope you find this a day brightener for all the wonderful work you do.
Jane
On Tue, Apr 6, 2024 Chaya Venkat wrote:
Jane:
Thank you for writing, and thanks for the kind words about my efforts. CLL Topics and Updates survive and thrive only because of our grassroots support in the patient community. I hope soon you will feel comfortable participating in our discussions. In the meantime, you are doing exactly what I would do in you shoes – learn as much as you can about this disease.
Your family background is all too familiar to me. I am sorry you have an aggressive form of CLL. But given that, you have made wise choices in your medical team as well as frontline therapy. Mayo Clinic (Rochester, MN) is my favorite expert center. I know all the folks there very well and think very highly of them. Campath is one of the few drugs (along with Revlimid and flavopiridol – still an experimental drug) that are known to work on 17p deleted cases. At 54 you are very young to try and let the clock run out on this disease. When the time is right I hope you will explore the option of a mini-allo transplant with a suitably matched donor. We have a lot of articles on the subject both on Updates as well as our flagship website clltopics.org
If there is anything I can do to help you personally, please do not hesitate to write. Working one-on-one with our members is the best part of this “job” and at any given point in time I have dozens of patients that I try to help.
Best wishes,
Chaya
From: Jane
Sent: Tuesday, April 06, 2024 9:47 AM
To: Chaya Venkat
Subject: Re: [CLL Topics Updates] New Article: “Case History of a Relapsed CLL Patient”
Chaya,
I am a newly diagnosed (last Dec) SLL/CLL patient, and still too timid to post to your site, but do feel compelled to let you know how amazingly helpful your website is and how much I appreciate all your work on it.
I was stunned by this case history… I am a 54 yr female, Ashkenazi jewish descent, strong history of multiple cancers from both parents (my dad had cml leukemia, among other cancers, my one brother was diagnosed 2 yrs ago with follicular lymphoma)… I am currently in a trial at Mayo using Campath, pentostatin, and low-dose rituxan after I learned I have the 17p deletion…
I’m sure this is a story you are very familiar with, much more so than I am, as I try to come up to speed on as much as I can. Mostly, I just wanted you to know that there is one more person out here in cyber-land that very much appreciates your perspective, advocacy, and hard work you put into this site.
Thank you!
Jane
Jane’s Happy Ending
(Fingers crossed!)
Background
January 1, 2024
Getting a stem cell transplant is a leap of faith. While it’s faith in science rather than religion, it’s still a leap of faith, and faith is not one of my strong suits…
Since being diagnosed with small lymphocytic lymphoma in December of 2024, I have felt almost completely fine and normal and certainly fully functional. With rapidly growing lymph nodes in my armpits which were a bit uncomfortable, a decision was made to start treatment in February 2024. At that time, FISH analysis was performed which showed I had 70% 17p-deleted SLL/CLL. At that time, my local Minneapolis oncologist made contact with experts he knew from the University of MN and Mayo Clinic.
Dr. Clive Zent from Mayo responded to my local oncologist that he had a trial using pentostatin, alemtuzamab (Campath), small doses of rituxan three times / week (PAR), and GM-CSF, and his recommendation was to get me into a good remission and quickly into transplant. I headed to Mayo and started this protocol the end of March, 2024. I sailed through this regimen without much problem. (I developed fevers from the GM-CSF and possibly from Bactrim, so I was switched to GCSF and pentamadine. The fevers never recurred. Even though I tested CMV negative before the treatment started, I was still tested weekly for CMV throughout treatment and continued to be tested monthly until I was turned over to the transplant team.) I was able to be treated in Minneapolis for the three times / week Campath shots and Rituxan, with bi-weekly trips to Mayo. At the end of the 12 weeks of treatment, I was feeling good, and in August (two months after treatment was completed), was declared in “complete clinical remission”. I was not tested for MRD, as Dr. Zent felt that was not useful for me. But all palpable and abdominal lymph nodes were gone, and bone marrow was clean (had been 50% infiltrated).
[A side note: I am not a “normal” CLL case. The decision to treat me was based on my rapidly growing lymph nodes throughout my abdomen, groin, armpits, and neck, and infiltration of my bone marrow, and the fact that I was 70% 17p-deleted. All of my blood counts prior to and throughout all treatments have stayed in a “normal” range, and, as far as I can tell, the Rai and Binet stages do not apply to me(?).]
Going into my stem cell transplant, one of the things that made me most leery was that on the clltopics website, my main online information source, there were no case histories of good outcomes, only tragic ones. And it was hard to convince myself that I should not only voluntarily go make myself sick with the transplant, but the likelihood of ever feeling as good as I’d been feeling again was pretty slim, given the probability of GVHD.
My initial decision was to wait and closely monitor, and see how long this good remission lasted. I was aware that the possibility of this good a second remission would be lower, and I was healthiest now for transplant. I had no intention of going through multiple therapies for a long time and throwing away a good transplant opportunity. But, I just wasn’t willing (yet) to put an end to what felt like a normal, healthy life! I was aware of the studies which showed going into transplant healthy were so much more successful than “hail Mary’s”, but I wanted to just wait a little bit, and I just felt so darned good…
While the transplant doc I saw for consultation at the University of MN strongly recommended against this approach, Dr. Zent felt it was “reasonable” to closely monitor and use high-dose steroids if needed to get me ready for transplant, and that it wouldn’t greatly increase my transplant risk (my words, not his). So we agreed I would be closely monitored…
After my declaration of “complete clinical remission” at the end of June, I almost immediately developed an assortment of dermatitis’s with mildly itchy skin in various places, which were treated adequately with an assortment of steroid and anti-fungal creams, lotions, shampoo, etc. Dr. Zent attributed this to my recovering immune system being overly “frisky” and looking for something to attack.
At one of my dermatology visits to Mayo after my entire face had swollen up over night (diagnosed as hives), Dr. Zent saw me and found a palpable lymph node under my arm. When he saw me for my regular monthly visit a week later, it was bigger, and he found one under my other arm. This occurred in September – clearly NOT a durable remission! I decided at that time I really had no choice other than to go for a stem cell transplant, and questioned my decision to wait… Once the decision for transplant was made, (I had previously met with Dr. Hogan from the transplant team at Mayo), HDMP+Rituxan was scheduled for the following Monday, and a meeting with Dr. Hogan was scheduled. (As an aside, Dr. Hogan commented that it was probably a good thing that I did wait a little while for transplant, since my tumors returned so quickly and aggressively. I seemed to get a more durable remission from the HDMP+R than I had from the PAR.)
I again sailed through treatment, this time with five days of HDMP (1600mg/day!) and four weeks of regular dose Rituxan, and was again declared in “complete clinical remission”.
I just read the clltopics update, and I feel bad that I am unable to donate very much to support this website, which has been a godsend to me. The one thing I think is lacking on the site is a story of someone who goes through a mini-HSCT and has a good outcome! I keep checking back to Harvey’s Journal to get an idea of what I might expect, but I just can’t read to the end right now… Because of our medical expenses, I can’t give what I would like to the website. What I can “donate” to clltopics, is a good success story, and I hope (and dare plan?) to do that a year from now…
For now, I will document my experiences before they hopefully become fuzzy in my mind due to passing time…
Pre-Transplant
I only have one brother, and he was diagnosed with follicular lymphoma (he’s in stage 1 watch and wait), so obviously not a donor candidate. I was very lucky to have a MUD donor found relatively quickly. There was a big push by Dr. Hogan to get the transplant done before the Christmas and New Year holidays, so the process wasn’t prolonged. I had been scheduled to receive a second round of HDMP+R, but with the push for a quick transplant and my continuing good remission, the decision was made to forgo the treatment.
Dr. Hogan wanted the transplant scheduled for Dec 14th, but the donor was unavailable that week, but was available the week before, so a scramble was on to get the pre-transplant evaluation done in a hurry. We headed back to Mayo on November 17th to start a week of pre-transplant evaluation. (One thing I’ve learned is Mayo only wants to use fresh, not frozen stem cells, if at all possible. I’m sure it’s to eliminate all the infusion side-effects associated with the preservatives, but for whatever reason, it definitely makes scheduling a little more challenging!) I got through the pre-transplant evaluation, prodded and poked as never before, and was declared physically and mentally healthy.
Because my insurance requires the pre-transplant evaluation be complete before they will give final approval, we had a week “off” between pre-transplant evaluation and transplant. We headed home (which is at the edge of the Boundary Waters Canoe Area Wilderness, 3 miles from Canada, and almost 400 miles from Rochester) on the day before Thanksgiving.
We enjoyed an improvised, last minute Thanksgiving, and loved having a chance to be home again for a week. The following Tuesday, we “winterized” our house, which meant draining all the pipes and filling drains with anti-freeze, and moved anything that could possibly freeze into the basement, which we planned to keep at 40 degrees with electric baseboard heaters. It was very sad leaving the home that we loved, and we headed into the nearest town 40 miles away, where we were dropping off dog #1 with friends. (The absolute hardest part for me to this point was and is having to “re-home” our two Labrador retrievers – our only children – in “foster” homes for a few months!)
We got to our friends’ who were keeping the first dog, walked him into their house, and were saying our goodbyes, when my cell phone rang. It was Mayo clinic, telling me that my donor had failed final clearance! They did say I had a backup donor who was also a perfect match (!), and they would call in the next couple of days with some news…
We were definitely in a bit of shock as we took both dogs and headed back home, un-winterized the house, and settled in for a completely unknown period of time.
I got a call the next day that Dr. Hogan was pushing hard for a new transplant date of 12/20, and the donor was available to donate on that date. They put an “urgent” rush on getting the new donor’s final clearance. I got a call the next day that I was to be at Mayo on Dec 13th. Unfortunately, the donor wouldn’t have final clearance until the 14th. We just had to assume and hope all would be good.
We went through the house winterizing, dog drop-off routine again on the 11th, got the other dog “re-homed” in Minneapolis on the 12th, and headed to Mayo the morning of the 13th. As we were pulling into Rochester, I got a call that my new donor was cleared.
The Transplant
The transplant conditioning (Fludarabine and low dose radiation) was mostly uneventful – just nerve-wracking because it was all unknowns to me – nothing I’d ever experienced before. It was the same kind of nerve-wracking as initiating treatment last March, or getting the HDMP in October.
I am totally happy with the people and care I’m receiving at Mayo, and would recommend them to anyone in my situation, but I do have one small complaint… I learned that while reduced intensity conditioning (the mini in mini-allo) is the norm for HSCT for SLL/CLL, it’s not the norm in the BMT ward at Mayo. So we went through a lot of “education” and coaching and were told again and again how sick I would be by around Day 6, and that my neutrophils would be down to near zero. I hadn’t expected that from the research I’d done, and hadn’t expected it from talking with Dr. Hogan. But after umpteen nurses, dieticians, nurse practitioners, and physician’s assistants continually told us how sick I’d likely be, I gave up arguing with them and started to believe it. I may be the only patient they’ve had who began getting very worried because I was still feeling fine by Day 10…
One thing about Mayo is that they take total patient care very seriously, and whenever I expressed anxiety about anything, they would take it very seriously, and would explain to whatever level of detail we wanted and required exactly what was happening and why, until we were completely satisfied and my mind was at ease.
Mayo keeps transplant patients out of the hospital as much as possible. Their rationale is that in their experience, infection risk is no higher or more likely to occur outside of the hospital than in it. Plus, we were told that the infections that patients tend to acquire in the hospital tend to be the nastier variety. One of the doctors also told us they do it to be “mean”: He said one of the best things for transplant patients is to have them be up and moving around, and by keeping patients as outpatients, that forces us to get up in the morning, get dressed and go through normal morning routines, get to the hospital, walk the block or more in the tunnels of the Mayo complex to the hospital… I’d already figured that part out, and am not minding at all that I need to live a more “normal” life.
I was in the hospital for three days prior to transplant for IV tacrolimus (what Mayo uses instead of cyclosporine), and getting motivated to get out of bed and walk the halls of the hospital with an IV pole was not easy… Where I’m staying in Rochester, getting up and out of our room is a necessity, so I am much more active than I’d be in the hospital.
My transplant was scheduled on Dec. 20th, and that was the day for stem cell donation. It was also the day another Winter Storm Warning was forecast for Rochester. The nurses all assured me the stem cells would get here, but I spent a fair amount of the day on my pc, watching the weather and checking the Rochester Airport for cancellations and delays… The stem cells were scheduled to arrive at 10:30 that night. The next day I learned that all the nurses also kept checking the airport info online.
The stem cells arrived at 10 p.m. on Dec. 20th. Several nurses were unable to report in because of the snow, so one of the nurses who was scheduled to leave planned to stay with me and my new stem cells until someone else could come in. The actual transplant occurred at 2 a.m., and I mostly slept. As others have said, it was a non-event. I was released from the hospital on 12/21/2010, Day 0.
The only hiccup between then and now was a small hole discovered in my Hickman catheter, so the catheter had to be replaced. I was in a bit of a panic about that, both due to my very high infection risk, and because the first one was sore for a few days. I was afraid, in my weakened state, it would hurt more, be slower to heal, and I’m not allowed to take Tylenol because of the possibility of it masking fever… Again, a nurse practitioner spent an hour explaining the replacement procedure, which is less invasive than putting in a new line, and addressing all my concerns about infection risk and pain. The line was replaced last Monday, and hasn’t been a problem…
That brings me to today: Day 11, 1/1/11. I’m not much of a believer in omens, but the binary-looking date looks like it should have some significance, though I have no idea what…
Everything is still fine. I feel OK except I feel like I’m getting a cold. (I was told as long as the nasal mucous is clear and I don’t have a fever, it’s not unusual and they don’t worry about it.) My blood counts seem to have bottomed out and may be starting to rise? My neutrophils never went below 0.9, which necessitated another long explanation from the doctor as to how the new stem cells are surviving if my own blood counts never went as low as I thought they would. (The explanation was that the chemo/radiation was still killing off “my” stem cells, and what was showing in the counts was remaining blood cells that hadn’t died off yet, most likely not new ones produced by “my” old stem cells…) As long as he was happy with how I was progressing, I chose not to question it anymore.
I feel like getting a stem cell transplant is a little like a very prolonged, ultra-slow motion surgery. I feel pretty good, and there are times when I’d just like to say I changed my mind, I want to go home now… But it’s like I’m in the middle of surgery with my insides lying all over the table and there’s no turning back…. We were told that the standard protocol is to check for chimerism at Day 30, so we wait, hope nothing bad happens along the way, and try to just appreciate feeling good!
Day 15:
So far, the only really bad thing I’ve experienced was what felt like horrendous menstrual cramps last night. I’m peri-menopausal, so that could have been the case. The problem was the restriction that I not take any pain meds that might mask a fever related to infection. I called the BMT ward last night, told them my temp. was 96.3, and asked if I could take Tylenol. I took 2 Tylenol plus 1 ibuprofen (with permission) and was fine and asleep by midnight.
All my blood counts dropped today. Neutrophils down a point to 1.6, hemoglobin down to 9.6, and platelets below normal for the first time to 130. I’m a little nervous, but waiting to see what the next couple of days bring.
Day 18:
Here’s the email update I sent to family and friends this morning:
I’m still doing OK, and we “graduated” from the BMT outpatient ward of the hospital over to the clinic yesterday, where we met with my transplant doc. The good news is that I’m progressing quite nicely. The tedious news (nothing bad, just tedious) is that my neutrophil count seems to be plateauing or heading down a little bit. Dr. Hogan explained that that’s what he would expect to see, and he wouldn’t be surprised if the count keeps going down for a while before heading up, and I’m still at risk of becoming neutropenic. He did say they won’t check for chimerism until day 28 or 30, because the results before that aren’t very reliable, and will likely result in discouragement without any reason to be discouraged. In the meantime, we’re only going into the clinic twice a week now for blood checks, I can relax my restricted diet a bit, and brush and floss normally! All good stuff…
Dr. Hogan definitely wants us staying in Rochester - i.e. not staying in Mpls and driving down twice a week. We’re talking about starting to look for an apartment or townhouse in Rochester, one that would allow dogs(!) We’re not planning on making any sudden moves until my white counts turn the corner and start heading up again, but we’re getting anxious for that to happen :-) The transplant house is very lovely and nice and provides a very supportive environment, but I’m looking forward to being able to snack while watching t.v. without my mask on :-)
While we don’t have another appointment until Monday, we are heading back to the BMT ward this morning so John can learn how to flush my Hickman catheter, which needs to be done daily. As long as I was going in everyday, we weren’t responsible for that, but now John will have to do it. It doesn’t look like a big deal, just one more thing that needs to be tended to.
Other than that, we’re still in thumb-twiddling mode, waiting for counts to head up and be otherwise boring. I can’t believe we’ve been in Rochester for almost four weeks! Definitely a simultaneous feeling of not believing I’ve been here that long and it seems like we’ve been here forever…
That pretty much says it all. Except the truth is, we’re both starting to go pretty stir crazy. I’m really happy I’m progressing as well as I am and feeling as good as I am. But I think this is really the hard part. I’ve always considered myself a very patient person, but “watch and wait” has never been this hard before…
January 21, 2024 – Day 31
A couple of highlights from the past couple of weeks:
First, a decision was made to check for chimerism a week early. We were surprised by that, and when we met with Dr. Hogan after the fact and asked why it was ordered early, he sort of waffled and it sounded to us like it was a miscommunication and he did not really want it done that early. We did find out yesterday that the results were “aberrant”. Dr. Hogan said the results showed my cells, my donor cells, and a third set of cells! (I jokingly asked if I was part alien?) He said that since they’d never seen this before, they were just going to throw out the whole thing and do another test when I go in for my blood draw next Tuesday. Only if it still shows those results will they start working on figuring out what’s going on….
The second incident of note was that last Monday my hemoglobin dropped to 7.9. I was barely able to function as I was so weak and tired, so was relieved they ordered a red blood transfusion for that afternoon, my first ever. At the end of the two units of blood, my blood pressure, which is normally 110/70, shot up to 187/90. My chest was tight, I was having a hard time catching my breath, and couldn’t get comfortable. The infusion center paged the emergency response team, where they determined my heart and lungs were fine, and my blood pressure was starting to drop back down. There was blood in my urine and diarrhea however. Even though I was improving, they sent me to the ER at St. Mary’s hospital, where I was continually monitored and gradually improved. They sent me back to Methodist hospital to spend the night for observation. By Tuesday, I was weak and tired, but basically back to normal. The lab was unable to track down a reason for a hemolytic reaction, so their diagnosis was “probable overload”. When we met with Dr. Hogan yesterday, he said he wasn’t convinced that that was the entire story based on the physical reactions I had, and thought there may have been a combination of overload and some obscure antibody or something in the blood that my system didn’t like. Hopefully I will not need another transfusion. My hemoglobin is back up to 9.0, so I obviously was able to process at least some of the two units I received. According to Dr. Hogan, at this point in the process, my hemoglobin may level off, or may drop again…
My neutrophils are back up to 1.8, after dropping to 0.79 (a new low) on Day 20. When asked if neutrophils should have leveled off and start heading up by now, we were told that for my protocol, there is no normal at this point. They may still go down again or may not. So we are back to watch and wait…
January 29, 2024 Day 39
My hemoglobin has stayed up above 9 so far, so at least I don’t have to worry about more transfusions for a while anyway. My blood is only being checked weekly now, but based on my energy level, I feel like it’s staying reasonably high enough. Unfortunately, I’ve developed a bad case of frequent, watery diarrhea, and was diagnosed with c.diff. a couple of days ago. The only symptom is the diarrhea – no nausea, fevers, or otherwise feeling unwell, so that part’s good. But add 6 flagyl tablets to my daily meds…
My biggest problem right now is that I’m going stir-crazy – especially because I’m feeling so well. I’ve always been very independent and come and go as I please. It’s really starting to bug me that I can’t just hop in my car and go shopping or driving around or whatever. I go for walks outside, but it is mid-winter in Minnesota, so that’s somewhat limited. While I love being with my husband, who’s doing an amazing job as my caregiver, I just want to have time on my own again – and not just in the apartment! It’s really starting to get me down… hopefully when we bring one of our dogs down to Rochester my mental health will improve. But I hate the forced dependence. I keep trying to remind myself that the good news is, if I wasn’t feeling as well as I am, this wouldn’t be a problem, so I try to stay positive with that…
February 11, 2024 Day 52
Not much has happened with me, though the past week has been a whirlwind…
I had another blood transfusion last Thursday, after my hemoglobin fell back to 8.0. It went just fine with the help of Benadryl and Tylenol premeds, plus the Ativan I took to calm my nerves about it… A couple of magnesium infusions, since that level just won’t stay up, and I’ve been dealing with a bad case of diarrhea so they don’t want me to take more magnesium pills. I also had a mild bout of c. diff., which tested negative after a 10 day course of flagyl. Hopefully that will stay away…
Last weekend we were given permission to spend the weekend at our house in Minneapolis. We were dragging and reluctant to go, just to spend two days somewhere else. But it was a mental godsend. I got to feel healthy and relatively normal. I even could drive myself to do some grocery shopping, which felt great.
We picked up our dog that was staying in Mpls and brought him back with us. Unfortunately, on the way back to Rochester, we learned that our dog that was staying with friends up north was diagnosed with bone cancer, was in severe pain, and should be euthanized. We went back to Mpls on Weds and picked him up. We were able to spend the night and next morning with him before taking him in to end his pain. Coming back to Rochester felt surreal. We have no memories of our dog being in Rochester, but I keep wanting to call his foster home up north and see how he’s doing…
I’m being good about going through the motions of taking all my meds at the right time, eating when I’m supposed to, and taking Benadryl so I can sleep at night. With all the pills I’m taking, I wish there was one they could prescribe for a broken heart…
We got the results of my chimerism test today, and like much about me, the results were “weird”. Dr. Hogan said he’s not concerned; that there’s definitely some level of engraftment though he can’t be sure how much, and my blood counts are all doing very well. My neutrophils are back into normal range and my hemoglobin is up to 11.8, so all is good that way. He gave us permission to move back to Mpls and make the weekly 2 hr. commute to Rochester once per week. Moving back north is still out of the question until after Day 100, but just being in Mpls. feels like huge progress. It will be a very bittersweet homecoming with Eddie gone from our house, but it will be a win none-the-less, and I think will actually help us through the process of losing him. Of course, I wish he would be there so we could be our happy two-dog family once again, but it’s just not to be.
So overall, everything with me is good, except for a broken heart….
Friday, March 4 Update Day 73 (from emails to family and friends):
Sorry I haven’t sent any updates for awhile, but nothing really to report - which is a good thing. We’ve settled into living in Mpls, and counting days until we can go north. Day 100 is March 31st, which is in sight, so I’m getting antsy to get north! Sounds like quite a few tests at that point, so I’ll probably head north early in April.
I’ve been feeling good. I had an early bone marrow biopsy last Tuesday. It’s normally done around day 100, but because my chimerism tests have been so “weird”, they wanted to check and make sure everything is good, because they don’t have a good sense of how much I’ve engrafted. We saw the doctor today and the bone marrow and blood tests showed no sign of CLL/SLL, which is what we hoped for! Unfortunately, they didn’t shed any new light on engraftment, so we just have to go with “all appears good” without an official test to confirm it. (The Mayo labs are still working on my chimerism test DNA, and if they ever do figure it out, it’ll probably end up as a case study somewhere…) Also, still no signs of GVHD, which I certainly appreciate. I’m weaning off of one of the anti-rejection drugs, but still on another one full strength, which is likely keeping any possible GVHD in check at this point.
My blood counts are dropping again, but the doctor didn’t seem concerned about that. He said that it’s pretty normal with reduced intensity conditioning transplants for CLL. So it feels a little discouraging, but not so bad… My hemoglobin is still dropping without transfusions, but I’m not quite low enough to require another one quite yet. I did ask and if needed, I can have that done in Mpls, so that would be a lot more convenient, since it takes around 6 hours.
March 25, 2024 Day 94
Today was Mayo day, and we’ve been in countdown mode - one more week…
My blood counts were pretty much the same as they’ve been for the past several weeks: hemoglobin low (8.5) but not enough to need a transfusion; white counts low - but not enough that the doctor seems overly concerned. We got the chimerism results and they still show 50% me and 50% donor - lower than they want to see at this point, but no lower than they’ve been…
The doctor came in and said that we were “close enough” to Day 100 and said we could go home and come back in two weeks!! I still get teary thinking about it :-) They will continue to do chimerism tests monthly and monitor engraftment percentages closely. They really want to see 100% donor, and if the per cent starts to trend down instead of up, they will consider giving me more donor cells. Dr. Hogan explained that their studies show that to combat CLL, 50-50 is not good enough… But at this point, I feel great and they will just monitor closely. I’m almost off of one anti-rejection/anti-gvhd drug (cellcept), and will now start slowly tapering off the other one (tacrolimus). They want to see what happens to the donor cells and watch out for possible GVHD as I get off these drugs.
In the meantime, this news caught us a bit by surprise, so we’ll still be in Mpls another week doing all that we need to do before moving back, but I’m still overwhelmed by the freedom of being allowed to leave - both elated and a little nervous…
April 23, 2024 Day 123
From my email to family and friends:
I haven’t been sending any updates because not much has been happening and all is progressing well, for the most part. You’ve probably noticed by now that a stem cell transplant is not at all like a solid organ transplant. Instead of a surgical procedure that you heal from, a stem cell transplant is a “process” that continues for a long time… But I’ve been getting lots of questions and again can’t remember what I’ve said to whom, so here’s all the news since my update a month or so ago…
As planned, I headed north on March 31st, Day 100. John went the day before to warm up the house and clean, and when I got there it was heaven!! There was still two feet of snow on the ground, and when I got inside, there was a Christmas card sitting on the dining room table where we’d left it when we left on December 12. I felt like I hadn’t really been gone and Christmas was right around the corner :-) Very surreal… It was very easy to quickly get back into normal life at home up north!
We went back to Mayo the following week for my bi-weekly check-in. That was my “official” Day 100 check (even though it was Day 108), and I had nine or so appointments, starting at 7:45 a.m. with pulmonary function test, followed by bone density scan, chest xray, ct/scan, and I can’t remember what all else. Then my normal blood draws and bmt doctor visits, and finally, when all checked out good and I was pronounced “ok”, removal of my Hickman catheter at 4:15. They’d done a bone marrow biopsy a few weeks early so didn’t need to do that again. It was one very exhausting day, but really good, with no signs of cancer. My blood counts all seemed to have plateaued at a low level, but not low enough to cause much concern.
I’m tapering off my last anti-rejection drug (tacrolimus), they’re looking for how that affects all my other blood levels, looking for signs of GVHD, and they’re doing monthly chimerism tests since I’m not at 100% donor.
Anyway, it was a quick weekend down then back north. A few days later, we got a call from Mayo that my latest chimerism test was down to 30% donor cells, which caught us off guard. I guess we were expecting them to hang out around 50% for the foreseeable future, since nothing else was changing. That’s what the doctor said he expected. But since the drop to 30%, they wanted to do another chimerism test before I came back, to do a test with finer detail. (I think, though am not positive, that the 30% was the blood chimerism that Mayo does in their lab. The chimerism “sort”, which checks specifically for T cells - the most important ones for the transplant, is what they send out to Seattle and takes a week or two for results.) So they mailed a kit to me up north, so I could bring it into the local clinic and have them send it back to Mayo. They really want to see close to 100% donor cells by now, so we’re definitely nervous about the possibility of the new cells being rejected…
After a couple weeks up north, we were back in Mpls this week, with our bi-weekly Mayo trip yesterday. Overall, it was good. We’re still waiting on the results of the latest chimerism test that was drawn in the local clinic and mailed back to Mayo last week. Yesterday they drew blood for another chimerism test while we were there, since there’s a couple weeks lag time for results. (It was pretty exciting to get poked for a blood draw like a normal person, instead of getting blood through my central line! I’m sure that novelty will wear off fast, but it was nice…)
What we did learn yesterday was that my hemoglobin was up to 9.5 - it had been hanging around 8.5 for several weeks, so that was really good news. My white counts were also up a bit. The doctor was encouraged that that was due to the donor cells kicking in. He was very clear that he does not want to prematurely infuse more donor cells if they aren’t absolutely needed, because of the increased possibility of bad graft vs host disease. As he said, even if the graft goes to zero, we can deal with that. Once the new cells are there, if I do get bad GVHD, they can’t remove the new cells and GVHD can be really hard to treat. So he sounded like he wanted to be very conservative and go slow and see what happens, which makes a lot of sense to me. He did say, it’s not impossible, but highly unlikely that my increased blood counts are due to my old cells kicking in - chances are the new cells are kicking in as I’m tapering off the anti-rejection drugs, so he’s remaining optimistic that all is good until he sees otherwise.
The bottom line is, I’m feeling great and all is ok until we hear otherwise :-) Just like the last several months have been, an exercise in patience while we wait and see what happens. As long as I’m feeling good, I’ll take it and enjoy being up north, which is where I’m headed tomorrow morning :-)
From my email to family and friends, Thursday, June 16, 2024:
It’s been almost two months(!) since I’ve sent an update, and you can assume that no news is good news… I don’t have bad news to share at this point, just iffy….?
I’ve been on 4-6 weeks between visits to Mayo, with weekly blood draws in our local clinic. We even took a “mini” vacation to St Louis to see the Cubs play baseball.
Last week I was at Mayo where I got a basal cell skin cancer removed from my scalp on Tuesday (a mere annoyance in the scheme of things!) and my regular transplant follow-up visit on Weds. My blood counts were markedly down from just the previous week, so with a little trepidation, drove back home up north on Friday… John was called out for work in Arizona, so I was home alone.
Anyway, I got my blood tested in our local clinic again on Monday, and my hemoglobin was down to 8.6 and neutrophils down to 0.4. Definitely neutropenic and at high risk of infection… again! My neutrophils are now lower than they ever became post-transplant… I stopped my last anti-rejection drug the week before, and got to be off all food restrictions, mask wearing, etc., for four whole days! I did get to eat lox and bagels, and had a big salad for dinner before the food restrictions were back on :-)
After chatting with one of my nurse coordinators at Mayo, I reluctantly agreed it was prudent for me to be in Mpls. with my high infection risk, rather than hanging out by myself out in the boonies, over an hour away by ambulance from our basic community hospital. So on Tuesday, my dog and I headed back down to Mpls, where we have close-by neighbors and quicker access to emergency medical care if needed - which hopefully it won’t be…
The fear with my blood counts crashing is that I may be rejecting the new donor cells now that I’m off the anti-rejection drugs. My doctor has said that he’s also seen blood counts go way down as the new cells take over, so that’s still a possibility. I just received results of peripheral blood chimerism which is showing I’m still 40% donor, so I take that as a guardedly positive thing…? I’m still waiting to see if I get results from the sort chimerism that checks for t-cell donor %, and is more significant. Sometimes I can get results and sometimes I can’t… :-) And, blood tests last week show my cancer is still in remission. Dr. Hogan sounded fairly certain that that’s the effect from the transplant itself, rather than the pre-transplant chemo and radiation. Another positive…
In the mean time, I still feel basically fine, just a little less energy with the low hemoglobin. Just back in my “sort of bubble” to try to not get sick… As the doc said, yes, discouraging, but not disastrous… I’ll still get weekly blood tests, now in Mpls, will head back to Mayo for follow-up after the 4th of July, and still waiting to see what happens next…. I don’t remember hearing that one of the most important requirements for getting a stem cell transplant is patience…
From Email, Monday, June 20, 2024:
Quick Update… good news…
Today’s lab work shows my counts have all jumped up back to “safe” range! I’m not sure I trust them quite yet… I’ll feel better after a repeat showing in another week. In the meantime, I was told it was now ok to go home back north, but will stay in Mpls for a few more days to do routine doctor appointments and get the garage door fixed. I feel a little whip-sawed… I was just starting to get used to food restrictions and mask wearing again, and suddenly it’s determined they’re not needed. We’ll see…. :-)
Oh, and another chimerism test that came back “non-diagnostic”… Sigh… Dr. Hogan wants to try it again and will send me a kit. At least he’s persistent! My current dilemma is which address to use for them to mail the kit…
From Email, Monday, June 27, 2024:
Another quick update with good news…
Weekly blood tests in the local clinic this morning resulted in my counts being even higher than last week. I was pretty nervous waiting for the results, since I wasn’t convinced that last week’s uptick hadn’t been an anomaly.
Still waiting to see what happens next, but for now at least, doing the waiting in a better mood :-)
From Email, 7/13/11: All, or at least mostly, good news…
My bloods counts have continued to rise, and are now within sight of “normal” ranges. Chimerism results are still “non-diagnostic” - Dr. Hogan is clearly getting annoyed with them and is trying to get the lab to double-check the donor sample. He’s not optimistic that will get anywhere because of donor confidentiality and inability to get another sample… But, all appears good, so he said to assume that it is until we learn anything to the contrary.
The plan moving forward is to check my blood bi-weekly for a month, then monthly. I don’t have to return to Mayo for “2-3 months”!! At that time, they’ll do another ct/scan to check my remission status.
So for now, all is good. Assume no news is good news…
And, not emailed:
My fatigue seems to be getting worse instead of better. I think that may be because I feel “fine” so expect to be able to keep going at the same pace I did pre-transplant. Last Weds. I spent 10 hours in Rochester at appointments and visiting friends. After getting back to Mpls. at 8:00, had to go grocery shopping for my trip back north the next day. I was so exhausted I was in bed by 9:30. I had to push getting up Thursday morning, to get to a meeting at 9:30, prior to the 7 hour trip north.
Duluth is the halfway point on the drive, and I stopped to visit a friend in the hospital there. Looking for a shady place to park because I had my dog with me and it was hot out, ended up hitting a parked car! I’m sure it was because I was so over-tired, and should have waited a day to head back north.
I’m also experiencing “chemo-brain”, which I mostly laugh off, but is starting to get to me. (Between chemo-brain and peri-menopause, my brain has turned to mush!) But I’m nervous that was a contributing factor in my accident also. I’m trying to stay up-beat, but I think the stress of waiting to see what happens due to the lack of chimerism information, combined with my other cognitive issues, is definitely starting to get me down. I need to remind myself that I’m still only six and a half months post-transplant, and I need to pace myself and keep from getting over-tired.
Saturday, July 16, 2024
I think I’m finally starting to feel caught up as far as not as tired. I just think I was over-did it and it took almost a week. I definitely need to learn to pace myself….
Thursday, October 06, 2024
Yesterday was my three month follow-up at Mayo. I’m definitely feeling better – no longer counting “days post-transplant”. It’s approximately nine and a half months since I got my stem cells.
I was nervous getting the ct/scan… Dr. Hogan has completely given up on chimerism testing for me. I haven’t had any palpable lymph nodes that I could find, so was “cautiously optimistic” but definitely not convinced I was cancer-free. The ct/scan came back negative for any sign of enlarged nodes!! Dr. Hogan is convinced I’m engrafted, missing chimerism test results notwithstanding. My blood counts are mostly in the normal range – hemoglobin was down to 10.4 and lymphocytes are still only up to 0.9. But other counts, and liver and kidney function are all totally normal.
In addition to my usual appointment with Dr. Hogan, I saw Dr. Zent for the first time since last fall. When I saw him last, he said, “see you in a year…”. What was left unspoken was, “if I make it that long…”. It was so good to see him yesterday, I wanted to cry. And I know it made him happy to see how well I was doing… He did thank me and mentioned that I was a “pioneer” for getting PAR followed by HDMP/R to achieve a really good remission prior to transplant. Nice to know I could help :-)
My energy level has been improving and my chemo brain has been resolving a bit. As long as I walk at least a mile a day, I have reasonable energy. Last week, I went on longer hikes a couple of days. Hiking trails over rocks, roots, and up and down hills is a lot more work than walking along a dirt road, and it was work. But I accomplished a 2 mile trail hike on Tuesday, and a 3 mile hike on Friday. Dr. Zent smiled and said, “I’ll put you down as performance level 0…”. Life is good!
Tomorrow is Yom Kippur eve. It is the day that God seals the entries in the “Book of Life” for the coming year. “Who will live and who will die…” Last year this was especially poignant for me, knowing I was heading to transplant. I feel so lucky and blessed that I’ve made it IN GOOD HEALTH to this time.
L’ Shana Tova.
Saturday, March 31, 2024, fifteen months post-transplant
I have remained remarkably well and healthy. Some very minor GVHD experienced mostly as dry mouth and dry eyes, which have mostly resolved. I did go through a period of not being able to eat any food that was the least bit spicy, but after a course a dexamethasone mouth wash, that has mostly gone away. Now, I use biotene toothpaste and drink a lot of water, and that’s about it. I continue on penicillin and valacyclovir prophylaxis, but am off all other meds. My energy is almost back to normal. If I get over-exhausted, it does take several days to recover, and I find I now need 9 - 10 hours of sleep at night. There are no side effects that I can’t easily live with.
I never was able to get a conclusive chimerism test, and they’ve given up trying. Dr. Hogan describes this as akin to losing an instrument on an airplane. The pilot can see that everything is fine, but it would be nice to have the reassurance of a conclusive test. In other words, as long as everything is fine, don’t worry about it! The thought that GVHD, relapse, other cancers, and who knows what all else can crop up at any time always remains in the back of my mind. The positive side of this is that I’m able (often – not always) to use this knowledge to help me appreciate life and try to make the most of each day. At the age of 56 and after 20 years off and on in a graduate program, I will be getting my Ph.D. next month. For now, I am more concerned about politics, the threat of wildfire, and what to cook for dinner, than I am about any health issues…
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