One Year Out

Tommorow is December 17th, which will mark what I've heard others call, my re-birthday. It will be one year since my stem cell transplant, and it feels great that I'm back to work, feeling good, and able to spend so much time with my family. A year out from transplant, I would like to be cancer and GVHD free, but that isn't to be. Even though I still have to deal with those issues, I am feeling great.

Right now I am on my third cycle of Ontak. I had the second cycle in November, and the higher dose I received hit me a bit harder than the first cycle. Its hard differentiating between what symptoms are caused by GVHD, the Ontak, or maybe just unrelated symptoms, but it wasn't the most pleasant month. It was probably a combination of issues, but I haven't felt like myself lately. One thing that was definitely effected was my appetite. I haven't been able to eat as much as normal, and this week I found out that I lost 16 pounds, from 208 to 192 in the last month. 192 might sound fine to some people, but my weight hasn't been that low since I was 15. I didn't trim my fat to 1% and look all cut, but I've lost a lot of muscle mass. I can tell my strength isn't what it used to be, and thats a bit frustrating. I'm definitely looking forward to a point when I'm not on treatment, and have the energy to begin working out again.

So the weight loss recently is going to lead to an endoscopy this week. I'll have that procedure on Friday, with the intent of learning if there is any GVHD or other explanatory factor for my loss of appetite in my GI tract. The GI doctor I met with on Monday, seemed to think that my weight loss is being caused by the Ontak, which he explained can speed up metabolism and decrease appetite. Kate thinks that combination should be marketed as a weight loss tool. If the reason for the loss of appetite is attributable to the medication though , then they can give me other medications to help stimulate my appetite.

The other news came from my PET scan results. From September to November, my scans showed that my lesions decreased from 7 to 4. On this scan after cycle 2, one more lesion disappeared, leaving me with just 3. The main spot where the original tumor was located was stable. A lesion near my shoulder decreased, and the third lesion which was near the original tumor grew in sizeand intensity.

Overall this report is a mixed result. Its great news in three ways...there was no new growth, another lesion of activity disappeared, and one more lesion continued to decrease. The stability of the original tumor is positive, because it had grown slightly on the previous PET scan. The big question is what is going on with the one lesion that is both larger and more intense, while everything else is improving or in check? My doctor can't explain what it could be, and his thought is to proceed with my third dose of Ontak, since it appears to be working with all of these other spots. I'll have another PET scan in January, and he'll decided on a course of treatment based on those results. Its possible that if this lesion responds to the Ontak this time around, that more Ontak will be used. However, if there is more unexplained results, then some consultation will need to be done to determine a further course of action. I usually don't think about my PET scans leading up to them, but this latest result and discussion has me really looking forward to the next scan already.

So this evening I will receive my second of five Ontak infusions for cycle 3. I've had positive results from the first two cycles, and hopefully there will be more progress towards eliminating the cancer after this cycle is done.

Good Pet Scan Results

Had a PET scan today, and the news was pretty good. After my last PET scan in September showed some regrowth, this scan after receiving one round of Ontak as treatment showed a reversal of the cancer activity. My doctor didn't have the full radiologist's report yet, but shared that there were 7 lesions of activity in September, and that 3 of those have completely disappeared. The other 4 lesions have all shrunk considerably as well.

The one area that isn't a complete positive is that the main tumor mass looked to be about the same size, if not slightly bigger. Of course I'd want to hear that this area shrunk as well, but it has to be taken into consideration that I didn't start Ontak until three weeks after my PET scan. Therefore the tumor mass could have been larger when I started the treatment, since we didn't have a true baseline.

So now that we have that information, I'll be starting my next round of Ontak tommorow. Its good going into this next round that the drug works. Its also nice to know that the doctors will be increasing the level of Ontak I'll be receiving, so hopefully I'll have an even better response. My doctor thinks 3 or 4 rounds of Ontak are likely, and he wants to take a scan after each round to follow it closely.

So my family and I are very happy with the results. The only thing bothering me now is some apparent infection in my mouth. I've had flareups of the GVHD in my mouth before, but this appears to be something else going on. It could be from the flu I had a few weeks ago, but I'm past the nasty flu symptoms at least. My energy is back up, I'm not coughing and blowing my nose constantly, and everything else is decent.

Ontak and Light the Night

Well its been a tiring week for me, and its kept me from writing until now. The 17th was the Light the Night Walk, and I'd label it a success. The final number that John Blattner Hates Cancer raised is over 6,000 dollars. So the group easily passed the goal I set of 5,000 dollars. Thanks again to everybody who donated money. Our total was part of over half a million dollars raised at the DC walk for the Leukemia and Lymphom Society. The weather at the walk wasn't great, but our team probably had over 20 people walking, which was a great turnout. I got to spend time with plenty of family that weekend, which was another great benefit to the walk.

The walk was Saturday night, and Sunday morning I headed over to NIH to the inpatient unit where I've spent over 45 days during the last year. It was nice to know I wouldn't be spending an extended amount of time there. I started the Ontak infusion that day, and didn't have any significant side effects. I had a slightly elevated temperature in the middle of the night, and a slightly depressed blood pressure. Those effects weren't enough to necessitate staying as an inpatient, so I was able to finish the five daily infusions as an outpatient.

As the week went on I started feeling a little more exhausted with the Ontak infusions. I assumed the cumulative effect of five infusions was starting to wear on me a bit, but a slight cough I had started the week with became more and more irritating. This past weekend my temperature went up to 101.9 at one point, and the on call doctors at NIH put me on tamiflu because of my symptoms. The following day I got a call from one of my nurses that I had indeed tested positive for influenza A.

Its been a rough weekend, and I ended up missing more time at work than I would have liked. I already am missing enough in my opinion with the Ontak infusions, and a bout of flu isn't helping me stay on top of work. The good news I can take from this is that the Ontak infusion was likely tougher to deal with because of the flu, and the next infusion might be even easier.

Right now its a few weeks until I'll start the next round of Ontak. The plan before then is to have another PET scan to see how the cancer activity is looking. Hopefully it will show that the Ontak has made some progress. One bit of news that my nurse practicioner shared is that the protocols at NIH that use Ontak have been giving the same amount of the drug that I received. However, they have noticed very little toxicity with that amount, and are changing their protocol to double the dose given to patients. So it is likely that since I handled the first round of infusions so well, that I will get the higher dose next time around. I'm certainly not going to complain about a little more ammunition being used to wipe out this cancer.

So right now I am feeling better than I was a few days ago, but still dealing with the fatigue and muscle aches that the flu can bring. In terms of treatment, I'm just waiting for the next opportunity to take the Ontak and further knock this cancer away.

New Treatment

I've tried to write an update a few times over the last week or so, and for whatever reasons I haven't been able to get through it. So I'll try to include as much as has been going on since the most recent PET scan.

The biopsy of my lymph node was delayed about a week because all of the interventional radiologists at NIH were away for a conference the week after my PET scan. However, I went in on a Monday morning and had them draw some tissue from the lymph node under my armpit, and the waiting was on. The first news I got was from my Dad, who knows one of the pathologists at NIH. He let me know in the middle of that week that the samples were cancerous. So keeping the fingers crossed that the PET was incorrect didn't help.

The stains that were run on my tissue samples took a few days longer to be analyzed, so there wasn't any other major news that week. However, my doctors had switched me back to sirolimus because it is for immune suppression while also having anti-tumor effects. One of the side effects of sirolimus though is mouth sores, and my mouth and throat definitely flared up after starting back on sirolimus. So for the last week or so I've been having trouble swallowing and eating most foods, much like I had trouble with before starting on prednisone back in June.

Last week my parents and I met with my doctor. He shared that the biopsy results showed no CD20 markers, but an abundance of cells with CD25 and CD30 markers. What this means is that the plan to use Rituxan, the anti-CD20 antibody, is not an option. The good news regarding those other markers, is that there are drugs available for treating both of those as well. The anti-CD30 antibody is currently in trial through the company that is developing it. My doctor was confident that NIH would be able to gain access to it for my use, but the paperwork might take a while. the anti-CD25 treatment is called Ontak, and is readily available at NIH. Since my cancer has been pretty aggressive in the past, the recommendation was to start with Ontak now, and possibly keep the option of the CD30 treatment for the future. The pathology from my biopsy showed a high prevalence of both CD25 and CD30 markers, so they should both react well to whichever treatment was used.

Part of the Ontak drug is a toxin, diptheria, which will help kill the cancer cells after they are identified. The main side effect of this toxin involves capillary leaking. This is when fluid will leak out of the capillaries and cause swelling. The risk of this happening in the lungs could cause severe flu like symptoms. Another possible side effect of Ontak is loss of vision. These don't sound like much fun, but my doctor didn't seem overly worried about them. I asked about how this might compare to the chemotherapy I've had in the past, and he stated that he just couldn't say. Its possible that my body could handle it much better or possibly worse. So who knows. However, most things I've read show that most people only have mild or moderate side effects from Ontak.

Another benefit of Ontak is that it has successfully been used as a treatment for GVHD. Since my GVHD is still a big issue right now, it would be great to have the anti-cancer effects of this drug as well as some help with my GVHD symptoms. I certainly hope to have positive results on both fronts from this drug.

So this week I will try to get started on the Ontak protocol. My doctor said we can try to maneuver around my work schedule, and I am curious as to how that will work out. Ontak is administered over five consecutive days, and I wonder how much time in the hospital that will require for each of those visits. There are definitely a lot of details with this therapy that I don't have yet, but the plan seems good for now. Its possible that after Ontak, more treatment, such as a boost of donor cells or more chemotherapy might be used in order to really try and knock my cancer out. Those type of decisions will of course be decided later.

Less than a week from now will be the Light the Night Walk for Washington, DC. I'm very proud that the team I've set up is just 25.00 dollars away from the goal of 5,000 dollars that I set. Thanks to everybody who has given to this cause to help the Leukemia and Lymphoma Society. The longer I keep dealing with this disease, it makes me realize how important that events like this are held that allow organizations like this to assist patients and further research. http://pages.lightthenight.org/nca/WashDC09/JohnBlattnerHatesCancer