Day 97

My clinic appointment is normally on Thursday (today), but since that is Thanksgiving this week, I went in yesterday. My blood counts were good, with the WBC going down to 3.7, but still in a good range. I took Neupogen just once last week (down from 2 and 3 times per week), and the doctor said to try cutting it out altogether this week. Also, my absolute neutrophil count was at 2.8, which is very good.

WBC – 3.7
Plt – 204
Hgb – 11.3
ANC – 2.8

In my previous blog entry, I noted that since some of my GvHD symptoms had subsided, I decided (with the doctor) to not start taking the Prednisone he had prescribed. Well, I continued to feel better all week, so I never started the Prednisone, and yesterday, the doctor said that it was probably a good decision. I believe that steroids like Prednisone, if taken over long periods, have significant unintended negative effects, so not starting it until really needed is good. I do still have a mild skin rash accompanied by mild itching, but it is quite bearable for now.

The PA asked me how I was doing psychically/emotionally. I told her that I was doing OK, but that I was feeling more how long a haul it is. This home confinement has been going on for 3 months now and I have some unknown number of months left. It’s not terrible, but I feel a little like the convict who is sentenced to home confinement, except that I don’t have the ankle bracelet. I told the PA that I am increasingly missing some of the foods that are restricted for me. She asked for an example, so I said I would love to have a hoagie for instance. She said that maybe in another week or two, I could treat myself to one, but it still can’t become a regular thing in my diet. I also miss salads and fresh fruits.

This being Thanksgiving Day, there are two things that are prominent in my mind for which I am especially thankful. I thank the Lord for life itself and for so many family and friends whom I love and who love and support me in return.

Love,
Justin

Day 91

Today, it has been 13 weeks since my transplant, and tomorrow will be the 3 month milestone. At my clinic appointment yesterday, my blood counts were pretty good. Most importantly, my WBC is still up; and while my Plt and Hgb were down slightly, they are in a good range and often a medication to boost one cell line (like Neupogen) will depress the others slightly. We are cutting back the Neupogen to once this week and if the WBC is still acceptable, we will stop it next week. The doctor thinks that maybe the marrow just needed a little kick start to get the white blood cell production back on track.

WBC – 6.1
Plt – 160
Hgb – 11.2

The doctor said that around three months is when they typically start to see GvHD in patients who have had the mini-transplant as I did. I have slightly increasing signs of it in a more pronounced skin rash with a bit of itching, plus intestinal cramps which I’ve had off and on for over a week. He referred to the GvHD level as being “trivial” so far, which I take to mean not up to level 1 yet. He did prescribe Prednisone (a steroid) for both of those conditions, but since they both seemed a bit subsided today, he said I could put off starting the medication. While I basically do what the professionals tell me, I have a prejudice of not taking medication unless needed, and I have the sense that steroids are not only effective, but also can have significant unintended effects.

The doctor also said that for someone my age, the odds of developing GvHD that could be considered Level 1 or higher is in the 80-90% range. Again, they have no idea what it would present like or how severe it would be. I also asked him if getting acute GvHD (in the first 100 days) makes the odds of getting chronic GvHD (after 100 days) more or less likely, and he said no.

Meanwhile, my energy level is pretty good, I’m sleeping OK, and my hair is still growing in. I also still appreciate your thoughts and prayers and look forward to getting back into circulation, although that is still months away.

Love,
Justin

Day 83

Today was another weekly clinic visit and the good news is that my counts were up, especially my white blood count (which is now in the normal range again).

WBC – 6.5
Hgb – 12.7
Plt – 197

The doctor still doesn’t know why my WBC plummeted like it did and we can’t be sure whether the Neupogen I’ve been taking is the only reason it went back up like it did or whether it would have gone up some anyway. I took the Neupogen 3 times last week and this week, he is cutting it back to twice. If the WBC stays high enough, he will cut back even more next week and hope soon to get me off it completely.

I’ve had some bone and joint pain plus a bit more tiredness, both of which are probably due to the Neupogen. I’ve also had a bit of an upset stomach, which could be some GvHD, or could be due to the Neupogen as well.

Now that I’m getting close to 3 months post transplant (which will be next Friday), the doctor is expecting more GvHD. He explained that with the old fully ablative transplants that they used to do, they saw a lot more GvHD within the first 3 months because the more intensive chemotherapy did more damage to many organs which left pieces of those organs all through the body and blood. This meant the antibodies from the new immune system could find and attack those pieces more easily, and when they were done with the pieces, the antibodies were all worked up and they then attacked the organs themselves. This, of course, is my translation of what the doctor said, but it gives the general idea. With the mini transplant like I got, the chemotherapy is less intense and does less damage to the organs, so the antibodies take longer to mobilize and attack the more healthy organs. This means that more often with the mini transplant, the GvHD comes after 3 months post transplant.

The doctor also said that I am a high risk patient in part because the stem cells used came from a female donor (which doesn’t at all imply that I am anything but totally grateful to my wonderful sister for donating the stem cells). Because of the relatively high risk, he may taper off my anti-rejection drug a bit more slowly over the next several months. He has to try to balance the need to get me off the drugs with the danger that doing so too quickly could cause severe, even fatal GvHD reactions.

In the meantime, I’m hanging in and doing OK.

Love,
Justin

Day 76

I went in to the clinic on Monday just to get blood drawn, some of which was being sent out to be tested for antibodies. My counts then were:

WBC – 1.3
Hgb – 12.2
Plt – 203
ANC – 0.2

Since my white blood count was so low, I got another shot of Neupogen to stimulate production of white blood cells. I went in again today for my weekly visit and the counts were:

WBC – 1.3
Hgb – 11.6
Plt – 187
ANC – 0.3

I got another shot of Neupogen plus two syringes for me to administer myself on Sunday and Tuesday. The white blood count and absolute neutrophil count are still a bit of a concern, but the results of the antibody test are not in yet. The doctor said that even if the antibody test came back positive, he’s not sure what he would do, if anything. His inclination still seems to be to wait it out and hope my systems work themselves out and the white blood count goes back up. He also said boosting one blood cell line (like with Neupogen for white blood cells) can somewhat depress the other lines and that may be why my platelets and hemoglobin are down a bit.

I got a little better explanation of how the WBC problem could be a form of GvHD. I was confused because the graft is producing the white blood cells, so I didn’t think it would also attack them. The doctor explained that there are T-cells that tell B-cells (T-cells and B-cells are a big part of the immune system and are a kind of white blood cell called lymphocytes) what to do and sometimes the T-cells are suppressed for various reasons (including medication) and it allows the B-cells to go a bit wild and sometimes they attack things they shouldn’t. I’ve done enough studying of lymphocytes which are one of five types of white blood cells to start to get an appreciation of how terribly interesting they are. It also increases my appreciation for what a complex system the human body is.

So, I guess I’m technically neutropenic again, although I still feel quite good. I still have a good appetite and decent amount of energy. I guess being neutropenic also means I should be extra careful to avoid crowds and sick people, wash my hands frequently, and try to avoid potential food problems.

My hair is definitely starting to grow back. I have a real mustache and am most of the way to having a full beard which seems to be coming in quite well, although it seems to be more “salt” than “pepper” these days. The hair on the top of my head is behind my facial hair in making a comeback, but it has definitely started growing again.

The current problems also remind me once again that while I feel pretty good, I still have a long way to go, and we don’t know what that path holds in store.

Love,
Justin