Month 16, part A

I went in to the clinic on Wednesday this week because Thursday (yesterday) was Thanksgiving. Again, my blood counts were close to what they have been for some time. The additional test was for my adrenal gland and it also showed good function.

...... last week current normal
..... ---------- ------- ---------
WBC.. 8.4 ...... 8.2 ..... 4 – 11
Hgb.. 10.9 ..... 10.5 ... 14 – 18
Plt.. 301 ...... 321 ... 150 – 400

After consulting with other doctors, my doctor said she believes that my problems are mostly due to GvHD attacking my skin (deeper layers) and/or connective tissue under the skin. This could cause the body to rush fluids to that area to combat the trauma. Working on this theory, she increased my Cellcept dosage to 4 pills a day and added a high dose of another powerful immune suppressant drug, Prednisone, which is a steroid (corticosteroid not anabolic steroid). Most BMT patients take it at some point, but until now, I had managed to avoid taking it. It was prescribed for me last fall, but after filling the prescription (but not yet starting it), my symptoms eased and the doctor said not to take it. It’s a drug that scares me a bit because it can have a lot of unintended effects (nausea, dizziness, depression, anxiety, sleeping difficulty, increased appetite, increased hair growth, etc.), and should not be taken over long periods of time. She is hoping that after a week of a fairly high dose, she can start tapering it off.

I started taking the Prednisone yesterday morning, and by evening I thought I noticed less muscle soreness and a decrease in the swelling. However, I didn’t want to get too excited because it might be because of activity level or something. However, this morning when I woke up, I definitely had less muscle soreness than I’ve had in close to 2 months, plus the swelling in my limbs definitely seems to be somewhat reduced. Additionally, I haven’t noticed much at all yet in the way of side effects. I am therefore allowing myself to be encouraged that the problem is GvHD and that we can overcome it soon. I think the theory is that if we can get the Prednisone to knock it down, that the Cellcept will then keep it under control. Of course my hope is that before long they will start to wean me off the Cellcept again, but I also suspect that when they do so, it will be more gradual than before (which was reducing by 1 pill per day per month) which would mean I’ll probably be immune suppressed into the spring or summer at least. Although that is disappointing compared to hoping I’d be off it all by now, I would look at it as a temporary delay which is not that long in the context of how long it’s been and how long it could be. I also know however, that a chronic GvHD like this can go on for a long time.

The doctor did feel it necessary to add a warning that increasing the immune suppression not only suppresses the graft versus host (GvHD), it also suppresses the graft versus leukemia effect. She said that really believe my disease is in full remission since all the chimerism studies have shown 100% donated bone marrow, but that if there were any leukemia lurking, it would have a better chance at making a comeback. I also feel pretty sure that the disease is gone, so I’m not giving much energy at all to worrying about that.

The doctor says the GvHD may not account for my low pulse oximetry (blood oxygen saturation), so she is scheduling me for a CAT scan of my chest to make sure there isn’t something else affecting my pulmonary function.

Stay tuned, and thanks again for your thoughts and prayers.

Love,
Justin

Month 15, part C

It’s been another week of test results that seem to reveal nothing about the cause of my current physical problems. While there are things in the blood that indicate whether the kidneys are functioning properly (and these things seemed normal recently), the 24 hour urine test is kind of the gold standard because it shows what the kidneys really do for a day. The results of this test still showed normal functioning, as did the extra blood tests which I had but don’t know what they were. This is good news, but means the medical team remains stumped by condition which, while it doesn’t seem to be getting worse right now, also doesn’t seem to be improving.

..... 2 wks ago current normal
.....---------- ------- ---------
WBC.. 7.4 ...... 8.0 ..... 4 – 11
Hgb.. 11.2 ..... 10.9 ... 14 – 18
Plt.. 281 ...... 301 ... 150 – 400

The only change this week was to bump my immune suppressant (Cellcept) again, this time up to 3 pills (1500 mg) per day. So I’ve gone from 2000 mg in July, to 1500 in August, to 1000 in September, to 500 in October, back to 1000 last week, and 1500 this week. This is quite disappointing to me because it felt like I was really close to getting off my meds, and now I’m guessing it will continue for at least several more months. The doctor tried to be reassuring by telling me that Cellcept is a relatively mild immune suppressant and that people who have had organ transplants have to stay on immune suppressants for the rest of their lives. It didn’t feel terribly reassuring. The doctor doesn’t even know that GvHD is the problem, but looks at the decrease from 2000 mg to 500 mg in 3 months as a rapid taper after a year at 2000 mg. The physician’s assistant said she felt like my previous doctor (who left just as I started the taper) had been quite cautious about reducing the Cellcept because my stem cell donor was female and he feared a more severe GvH reaction. My current doctor just looks at the taper itself and considers it aggressive, even though my body didn’t seem to react badly for 3 months.

My doctor is clearly frustrated, although in a very different way than I am, and says she thinks about my case every day. When I go in on Wednesday of this week, I’m going to ask whether they have consulted with any other specialists. It seems like someone should be able to figure out what’s going on. My blood tests this week include a couple of extras that I think are for checking out other glands like the adrenal and pituitary (or maybe pineal), but it sounds like they are getting kind of far down their list of things they think could be the problem.

Meanwhile, I’m trying really hard to stay positive and not get discouraged; although the truth is that I’m finding it harder and harder. I keep reminding myself how fortunate I am in so many ways, and I know that things could be much worse. I’m just ready to get better. I’m also getting tired of complaining, even though this posting undoubtedly seems full of it.

Any and all prayers and positive thoughts are still very much appreciated.

Love,
Justin

BTW – today marks 15 months from the transplant.

Month 15, part B

I went for an echocardiogram and PFT (pulmonary function test) on Wednesday, and then to the clinic on Thursday. The echo was interesting – it’s pretty much a sonogram of the heart, and the PFT was not as bad as I feared.

At the clinic on Thursday, I feel like I got good news and not so good news together in that they haven't found anything wrong, and they seem completely stymied by what’s going on. The good news is that my heart, lungs, thyroid, liver, and kidneys all seem to be working fine, and my muscles apparently are not actually being destroyed or breaking down. It was a relief to find these things out because there was a part of me that worried that one of these actually was suffering damage. I know some other BMT survivors who do have damaged lungs for instance that will never fully recover.

I had one other test after my clinic appointment, and that was some kind of Doppler in my upper and lower extremities to make sure I didn’t have clots that were the source of the problem. The doctor considered it very unlikely that I would suddenly have clots in all my extremities at the same time (she would have been much more suspicious if the fluid retention was not so symmetrical), but since they have no idea what’s going on, they wanted to rule out one more thing. The tests confirmed that my vascular system is clot free. BTW, I asked the vascular technician what was Doppler about the test, explaining that I know what the Doppler effect is and wondered how it played a part. She told me that the tests showed blood flow in the veins especially after she squeezed in a way to see the blood reverse direction momentarily. In other words, I didn’t really get my question answered although I imagine that the Doppler effect is used to gauge blood flow somehow. Once again, to me it looked just like a sonogram.

Next is a 24-hour urine test from which it again sounded like they don’t expect to see much because the blood labs already tell them much of what they need to know about kidney function, etc. She also prescribed a low level of a diuretic to try to ease my discomfort and see what effect it has, as well as bumping my anti-rejection drug back up to 2 pills a day from one. The reasoning behind this is that the onset of the problems seemed to coincide with cutting back from 2 pills to one in October.

I'm sure we'll figure it out and I can continue a positive recovery, and in the meantime, I'm working at not being discouraged by a dip in the road.

Love,
Justin

Month 15

After months of what seemed like a relatively straight (although not steep) line up in my recovery from the transplant, it seems there has been a dip in the road. The dip is not back toward my disease at all – my blood counts are still good as seen below.

..... last month current normal
..... ---------- ------- ---------
WBC.. 5.9 ...... 7.4 ..... 4 – 11
Hgb.. 11.5 ..... 11.2 ... 14 – 18
Plt.. 231 ...... 281 ... 150 – 400

Starting sometime around my last clinic visit a month ago, my muscles started being sore every day. At first, I thought it was because of tennis playing or something, but then we had a week of rain when I didn’t do much exercising, and my muscles were still sore or achy every day. It seems worse when I just get up in the morning or after other periods of inactivity like when I get up after sitting for a while. It seems better for a while when I use the muscles for some kind of exercise, but then they sore up again. It’s seems like it’s all my large muscles (and some of them are massive guns J) like my arms, legs, back, etc., and not my joints. Over the last few weeks, I also have definitely been getting winded easier. I can now do little without getting exhausted.

When I went in for my clinic visit on Thursday, I had gained 10 pounds since the month before (which really surprised me), and they noticed that my pulse ox was definitely low. The pulse ox is really some kind of saturation level of oxygen in the blood and it should be up near 100%. Mine is usually in the 96 – 98% range, but on Thursday, it was at 90%, which is too low. They had me walk up and down some steps and up and down the hall for a few minutes (which got me breathing pretty hard), and the pulse ox remained at 90%. I thought it would go up at least a little and commented to that effect, to which they responded that at least it didn’t go down. They also noticed that I was retaining a lot of fluids. When they pointed out how swollen my arms and legs were, I was blown away because it was so obvious and I hadn’t noticed it before they pointed it out. Looking at my swollen ankles might lead you to wonder if I was pregnant! I think that would also at least partially explain my weight gain.

After asking me questions, the doctor (who was a new doctor that I had not yet met), started thinking out loud and said that while it might be GvHD, because it can attack anything, it also might be something like a thyroid that has been thrown out of whack in a delayed reaction to chemotherapy. Apparently, the thyroid is the primary regulator of all sorts of bodily functions. After my appointment, they sent me over to the hospital for a chest x-ray. I am also now scheduled for an echocardiogram and a PFT (Pulmonary Function Test) on Wednesday. The PFT I took before my transplant was by far the most strenuous and uncomfortable test I had to endure. Testing my breathing sounds like it should be easy, right? Well, it’s very intense and long. The doctor on Thursday said, “You remember, the test where they yell at you.” The chest x-ray was clear as expected, and I’m sure there will probably be other tests after the ones on Wednesday. I’m scheduled for another clinic visit on Thursday.

So I’m not in a terrible state, but it is a bit discouraging to feel like I’m backsliding a bit after feeling like I was so close to getting off my meds altogether. It’s not fun to be achy all the time, out of breath whenever I exert myself at all, retaining so much fluid that I feel like an over inflated balloon, and still not enjoying the taste of food (getting of the anti-fungal drug didn’t seem to help at all with that), but I’m not suffering a great deal. I’m still certain that the current problem will be diagnosed and treated and I will feel like I’m back on the road to recovery.

To follow up on last month, I did participate in the bone marrow transplant orientation meeting last month and I found it quite rewarding to be there with people (along with families) who are about to go through the process to offer my experience about what it was like, and so they could see that one can come out on the other side with some level of normalcy (I can fake normalcy pretty well J).

I will write here again when I have news, which I hope will be pretty soon.

Love,
Justin