Day 279

The regular biweekly clinic visit went well today. My blood counts were good with my WBC being as high as it’s been in months.

WBC – 4.3, up from 3.7
Hgb – 11.6, down from 11.7 and still below normal of 13
Plt – 279, down from 280 and at a good level
AST-SGOT – 38, up from 36 (below 42 is normal)
ALT-SGPT – 44, up from 37 (below 40 is normal)

The doctor said one of the liver enzymes being slightly elevated is not something he is terribly concerned about right now. Also, my magnesium level was good after having been a week without taking any supplemental magnesium. They were happy enough with my levels, that they’ve cut back my Cellcept (which is my remaining anti-rejection med) from 4 a day to 3.

As for my questions I wanted to ask (some I mentioned in my blog entry from Day 270), I got the following:

• The doctor is satisfied with the amount of GvHD I’ve had. However, he believes it is likely I will have more down the road, and while he really can’t predict what or when, he said he’d rather it would be a bit more liver problems than skin problems because the skin problems tend to be tougher to treat.
• I can start to modify my dietary restrictions in that I can start eating fresh fruits and vegetables, but he is still wary of restaurant offerings, because one can’t tell how long the stuff has been sitting out and who’s been breathing on it, etc. I get the sense he’s just generally uncomfortable about it, even for himself. But I can have fruits and vegetables at home if they are cleaned properly. The human contact restrictions I need to keep observing until I am off of the immune suppressants. This is hard partly because it’s just hard for me, but also, since I haven’t been getting sick at all, it’s tempting to relax too much about avoiding crowds and hugging people.
• I do have to be careful about the sun because of both meds and GvHD. I think I can do that.
• As for my odds of cure, he didn’t really get specific about numbers even though he indicated that my odds now are better than they were. When I asked about the likelihood of the leukemia making a comeback, seeing how there has been no evidence of it since August, he is again cautious and says he likes to see 2 years of chimerism studies showing no residual disease in the marrow and blood before he has a lot of confidence about the leukemia being completely gone.
• Finally, I asked him about the new drug called Revlimid that has been in the news lately as being so effective in treating Myelodysplastic Syndromes (the disease I had) that the doctors studying it are somewhat stunned. He said that with the form of the disease that I had (Refractory Anemia with Excess Blasts or RAEB), it is not likely that it would have been effective for me because it seems to be much more effective against the milder forms of MDS than the more severe ones like RAEB.
  

So while I hear the doctor when he says he expects me to have more GvHD and believe him, I really am just enjoying that I currently feel pretty good and that I feel like I’m improving, even if slowly. If I get more GvHD, I deal with that then.

Love,
Justin

Day 273 - the catheter comes out

I'm actually writing this on Day 274. Yesterday (nine months to the day after my transplant), I had the Hickman catheter removed from my chest. It may not sound like much, but it’s even surprising me how liberating it feels to be without it. It was placed in September after the original Hickman catheter was removed because of a blood infection I got shortly after my transplant, followed by a PICC (peripherally inserted central catheter) which goes into a large vein in the arm but is only used for a couple of weeks. The catheter is used to draw blood, but the primary reason to have one is so that IV drugs can continue to be infused for a long period of time. The original catheter was used for meds in the hospital, for the chemotherapy, and for the stem cell transplant itself. Shortly after I was released from the hospital (for the second time – after my blood infection was under control), I used the catheter to infuse magnesium because my magnesium levels had been depleted by one of the immune suppressant drugs I was taking, and then to infuse saline solution because I couldn’t seem to hydrate sufficiently through drinking alone. The last infusions I got through my catheter were in early February. Since then, the clinic would get blood labs through the catheter and that was about it. The doctor left the catheter in because it was not causing problems and he thought there was a decent chance I would need it again for meds.

A central catheter requires care an attention. It is an excellent means of access to the blood stream for both meds and drawing blood, and is also an excellent means of access for germs, etc. The entry site needs to be kept clean and dry, meaning that I had to protect it whenever I showered and change the dressing three times a week, a process that took a bit of time and required 2 pairs of surgical gloves (one for removing the old dressing and one for everything after that), 3 alcohol swabs and 3 providone-iodine swabs applied in a specific way, and then a new dressing – all while diligently keeping the whole site completely sterile. I also had to flush each of the lines with heparin every day to keep blood from clotting in them and change the caps once a week. In the last couple of weeks, not only have I been feeling better and had my meds reduced, the weather has gotten warmer and I have started becoming more active with things like tennis and volleyball. More heat and more activity means more sweat and I found several times that the sweat would cause the dressing for my catheter to become unstuck which made me nervous. I therefore asked the doctor if I could get the catheter removed and he agreed.

ALERT – I’m going to get a bit graphic in this paragraph about how the Hickman catheter is inserted and was removed, so if you’re squeamish and don’t want the graphic details, you can skip the rest of this paragraph. The Hickman® catheter is made of very flexible rubber tubing that is inserted through the skin a couple of inches below the collar bone and then tunneled up to the neck, where another small incision is made so the doctor can extend the catheter into the jugular vein and thread it down toward the heart. My particular model of catheter also includes 2 cuffs just under the skin where it enters. The cuff closest to the surface was filled with antibiotics to prevent infection. The other cuff is standard on the Hickman catheter, is made of Dacron and is called by some the “fuzzy” cuff because it is like the fuzzy side of Velcro. The skin actually heals in and around this cuff so that it almost becomes part of the body. The tubing coming out of the body often is split into 2 or 3 lines (my first was a triple lumen and my second was a double lumen) and then there are caps on the end that are essentially valves to keep things from entering and exiting the body when they aren’t supposed to, and clamps that closed off the tubing except for when one wants to get something through. I thought the removal of the catheter would be fairly simple, a small incision where it entered the skin and then pull. However, because of the double cuff (and probably the length of time it was in), the doctor had to dig and cut for about a half hour to get it out. He said it was more difficult than most. It wasn’t fun, but it also wasn’t terrible painful even though only a local anesthesia was used. He said he doesn’t stitch the small hole where the catheter went in because it usually heals better without stitches, but the other hole he had to make to disconnect the cuff required a couple of stitches to close. He put the stitches under the skin and used ones that will dissolve and get absorbed, so I don’t have to go back to have them removed. When I showered today, I found that the second incision was about 2 inches above where the catheter entry was which surprised me a little. With all the digging he did, I was also pleasantly surprised to see that the second incision was still quite small. However, I also noticed that I had a large bruise around the incisions that is about 4 square inches. It didn’t surprise me much because I was actually fairly uncomfortable during the procedure from his pushing and pulling. I also realized that my worrying for 8 months that if the catheter got pulled a little too hard it might rip out a little was somewhat needless worry because I now think that it would have been very difficult to get it to separate at all from where the skin had attached.

Anyway, although I still have to keep the site dry and clean for a few days until it heals completely, I look forward to being able to shower without worrying about the catheter. I also noticed smaller benefits that I hadn’t thought much about like when I went to bed. For 8 months, I have worn a T-shirt to bed every night (I don’t normally) with a strip that I cut from the top of a sock pulled up as high as possible on my shoulder into which I tucked the catheter lumens so I wouldn’t be lying on the clamps or accidentally pull the tubing too much. Last night, I didn’t have to do that. Add all of this together with some other small benefits of not having tubes hang out of my chest, and you have a formula for a pretty good feeling of relief and liberation. It’s adding to my sense of actually getting better and my hope of getting back to a more normal life.

Day 270

I don’t know how my last entry wound up as Day 244, but I believe it should have been 251. This one is a delayed report of my last clinic visit which was last Thursday which would have been day 265. The news this time is that we’ve made what I consider to be a positive move on decreasing meds. My blood counts have generally improved even without adjusting meds (which may be affecting some of them), including my liver enzymes dropping into the normal zone.

WBC – 3.7, up from 3.5
Hgb – 11.7, up from 11.6 and still below normal of 13
Plt – 280, down from 281 and at a good level
AST-SGOT – 36, down from 37 (below 42 is normal)
ALT-SGPT – 37, down from 45 ( below 40 is normal)

As a result of my blood counts (especially the liver enzymes) being good and other symptoms like stomach cramping improving, the doctor cut me back on my immune suppressants. I was taking one pill a day of Prograf (tacrolimus), a drug I’ve been on since I started chemotherapy just prior to my transplant. He said to stop taking that drug, which leaves me on 4 pills a day of Cellcept, the other immune suppressant which I have been on since liver problems first arose in early February. He said that if I do OK over the next 2 weeks, he will then start weaning me off Cellcept as well. Being off Prograf means that this Thursday, I can also stop taking the magnesium supplement (4 pills a day).

This reduction of immune suppressant drugs is what I’ve been waiting for, and I consider it a very positive step. However, I have learned not to get my expectations too high, because there can be setbacks and new kinds of GvHD even years down the road.

The doctor said I am doing very well and commented that my sister (who donated the stem cells for the transplant) and I must be very close genetically because of how well things seem to be going 9 months after the transplant.

The questions I hope I can remember to ask him at my next appointment include things like the following:

• Is he happy with the amount of GvHD I’ve had (remember that he has said all along that while he doesn’t want to see a lot of GvHD, he wants to see some because it increases the likelihood of a good amount of graft vs. leukemia)?
• When can I start to modify my dietary and human contact restrictions?
• How much do I have to worry about exposure to the sun (we’re planning a beach vacation in early June)?
• Is he ready yet to adjust the odds of a successful cure up from 50 – 60 percent?

Since I’ve wanted to become more physically active, I’ve started doing more things like tennis, bicycling, walking, volleyball, and yard work, and with the weather getting warmer, I am also starting to sweat a lot more when doing these more strenuous activities. This is causing a problem with the dressing covering my Hickman catheter (central line) entry point into my chest in that the dressing starts to come off when I sweat. Since I haven’t used the catheter for putting anything into my blood since I stopped the saline infusions in early February, I asked my PA to ask the doctor if we can have the catheter removed. She just called back a few minutes ago and said that she got the green light for that and would try to set me up to have it removed on Friday. It will be so nice to get it out because not only do the tubes bounce around and get pulled when I sleep or play tennis and volleyball, I have to be careful to keep it dry when I shower, change the dressing 3 times a week, flush the lines with heparin every day, etc. Maybe not having tubes dangle out of a hole in my chest will also be one more thing to help me feel a bit more normal.

Love,
Justin