Before I bring you up to date, I want to mention that I am thinking of flying to Trinidad in order to gather my personal belongings from Heidi and see what I can do about selling her. Dave is currently doing well enough to function alone without me for 10 – 14 days. The next round of Nelarabine could change that – or some other problem. It would be far far better if someone could come and stay with him at the Pete Gross House while I am gone in case of emergency. If there is anyone on this mailing list with some free time who could do so, please let us know soon. Guessing March 9th to 20th give or take.
Insurance approved the Nelarabine, so he received a round of that. This one only takes two hours each on days 1, 3, and 5 of the cycle. (Jan 31st, Feb 2, Feb 4) So no hospitalization. Infusions were done at SCCA outpatient clinic. Labs every few days continue to keep an eye on blood counts and possible need for blood products. None needed this go around. PICC dressing changes every 6 days or so. No growth hormone. Such a different regimen for the same disease! And of course other leukemias are treated differently as well, let alone all the other cancers. Truly tailored treatment depending on each individual. No one size fits all.
Tuesday, Feb 18th he had both Lumbar Punch and Bone Marrow Biopsy. Friday we went in for the results. The malignant cells had been further reduced but were unfortunately still detectable. Recommended another round of Nelarabine. Side effects of weakness (hands and legs) still present. No way of knowing if another round of Nelarbine would exacerbate the weakness. But no better options believed to be available. There is a Clinical Trial for a CAR-T immune support procedure but it is only offered for people who have failed to respond to other treatments or relapsed without getting too debilitated. Dave’s response has not been as good as hoped, but good enough to disqualify him from the trial. At least at this point. If he gets worse down the road but is still healthy enough otherwise AND the trial is still ongoing, then MAYBE he could qualify for that.
On the 7th of Feb we had a two hour long visit with Dr. Krakow regarding the ins and outs of Transplants. Way too much to digest at one go. T-ALL is not curable with Chemo. Period. As I understand it, there is no real way to give any kind of prognosis – at least with T-ALL. Results of potential treatments: unpredictable when you come right down to it. They knock down the malignant cells but sooner or later they come back. T-ALL is particularly aggressive, meaning fast growing – doubling every 12 days of so. How long it takes to come back varies but is usually fairly quick – a matter of months. They may be able to lengthen that somewhat with low dose maintenance chemo – i.e. pills.
Results of stopping treatment whether ‘completed’ or not: the malignant cells take over the bone marrow again, red blood cells, healthy white blood cells, and platelets all cease to be made in sufficient numbers. This leads to anemia, risk of infection, and risk of bleeding excessively if injured. Again, no problem until you get cut or get infected or exceed your oxygen supply. Infection is the biggest killer as it tends to lead to sepsis, while the others can be treated with infusions. There is another problem with this kind of Leukemia. The malignant cells are sort of “sticky” so they run amuck and clump together and plug up organs and can thereby cause failure of said organs.
There are no drugs that will completely stop the malignant cells. There are always some that survive and they tend to be better able to withstand the drugs. So the life expectancy of the host is dependent on how far down they can be knocked and how long it takes them to come back.
The malignant cells can, however, be eradicated by healthy immune cells from a transplant – sometimes. The process is fraught with difficulties. The result, if successful, is a Leukemia free patient with new problems, most often Graft Versus Host Disease. Drug side effects also cause problems. In the case of T Cell Acute Lymphoblastic Leukemia, which is what Dave has, the difficulties are greater than with other kinds. But in case he decides to go that route, they already have a list of about 32 possible donors who would need to be further screened for best match.
Between the fast growth, the sticky nature, and the fact that it is the very cells normally responsible for keeping cancer in check that have gone malignant, the success rate leaves something to be desired.
First the current bone marrow is killed off as completely as the drugs available will do the job so that the malignant cells are minimized. The production of all the necessary blood cells comes to a near stop and infusions of donor blood products is needed and infection risk is high. The first donation is stem cells from a matched donor that develop into blood cells including healthy T-cells and take over the body’s immune function.
The first problem is that this is a slow process. It takes a fair amount of time for the new cells to establish themselves and learn what to attack. In the meantimes the remaining malignant cells are multiplying fast and may crowd out the new cell production just as they did the old one. In which case, the transplant fails.
If the new white cells succeed in establishing themselves they can kill off the malignant cells but can also decide that healthy cells must also be destroyed since they are also foreign from the point of view of the imported cells. So drugs are needed to keep them from doing that, which means that their ability to fight off infections is also debilitated! Hopefully, eventually, the new white cells learn what to attack and what to leave alone.
All of this involves a huge toll on the body with side effects from the drugs as well as attacks by the new cells on malignant cells and healthy cells on top of the normal infection battles that we normally never even notice. It was way too much information to absorb in one sitting. We had the opportunity to ask questions but they did not occur at the time. Plenty came to mind later.
With T-ALL there are a lot of malignant immature white blood cells. Are there any healthy T-cells? I gather there is no known way to support them. In a transplant, the donor T-Cells, small in number as they are, still vastly outnumber any healthy T-Cells of the host? Thus giving them a chance that the host’s cells don’t have? But if they still get overwhelmed by the aggressive malignancy, wouldn’t a larger implant work better? Or is it the learning that is slow rather than growth in numbers? What is it that takes time for the new cells?
So sometime next week will be another round of Nelarabine.
In the meantime, we have finally returned somewhat to living – as opposed to just existing. We finally found a place that allows us to use their fitness equipment through the Silver Sneakers Program which both of our Medicare Insurance providers include. So we don’t have to spend any money! Glory be! It is about a 15 minute walk from here so no transportation costs either. They included a one hour session with a trainer who suggested a collection of exercises. I’ve been going pretty much every other day, only once alone as Dave wasn’t up to going that day. I can’t say that I really enjoy it, but I want to get into the habit and improve our fitness levels, which have been suffering.
We have also attended a couple of activist actions. Fridays for Future Climate Strike, Extinction Rebellion planning meeting.
We are also going out on the water on Sundays – 4 times so far. On the steam boat Puffin the second and third times.
We visited the Museum of History and Industry.
Relocated Riva (after doing a bunch of shopping with her) at another friend’s place and enjoyed a group Italian Meal and Sauna with them.
Went to the Tacoma Dome to attend Bernie’s Rally but only Dave got to go in as we had brought backpacks that were not allowed in.
It looks like treatment will be ongoing for several months but with or without it the chances of actually going cruising again are too slim to justify hanging onto the boats. It is time to sell Heidi. She is currently a project boat as she is not ready to launch and sail, but she is still a good, quality boat. All or very nearly all materials needed to complete the projects are already purchased. If you know anyone who might be interested in her, please speak up.