So my doctors told me that I have no visible, measurable disease on PET or CT Scan, and everything else looks normal aside from the GVHD. So boom.
The new drug, Gleevec, really seems to be helping with the skin GVHD.
They want to see me back in February. So I have until then to pretend like I don’t have cancer. So let’s just call it a happy ending… on the house… that’s a $20 value. Or you could send me the $20. You know, however you want to handle it.
My clinical physicians’ assistant called me last Friday. She filled me in on the results of my doctors’ pow-wow on my case. My skin GVHD is pretty bad. It is affecting approximately 50% of my body and it is very deep within my skin. It’s bad. However, among all of their other patients who have skin GVHD as bad as mine, I am doing the best as far as performance in other areas. My flexibility and strength wowed the occupational therapists. My lungs were great. My lab (blood work) results were great. My mouth biopsies returned negative for GVHD. All of my other systems (besides the skin) were excellent.
They told me whatever I was doing, keep doing it. Who would have thought they would have recommended more blow and hookers? I’m kidding. Geez. Tell the stick up your ass to get the stick out of its ass. But seriously, the most widely accepted treatment for sclerotic skin GVHD is photopheresis. You can visualize photopheresis like donating plasma, except they are just killing the leukocytes with a UV light and then returning the blood to you, rather than harvesting plasma via centrifuge. The problem is that photopheresis treatment would require a central line.
This brings me to a weird insight into my cancer treatment. I am my own advocate. I don’t do everything my doctors tell me. I go outdoors [gasp]… in the sun [faint]. I am at my best when I am getting regular exercise. Lately, that has included running, swimming, strength training, golf, and yoga. If I get a central line, I won’t be able to do those things. I can’t get all sweaty, because the line will get infected. I have never had a central line that didn’t get infected. More than likely it’s going to get infected.
I told them that, and they listened. My results were compelling to them, so they decided that they would start me out on a more conservative course of treatment. They had just conducted a clinical trial on a drug called Gleemonex. I’m kidding. It’s called Gleevec. They did not get the results that they were hoping for as far as it treating GVHD, but in conjunction with the prednisone and the cyclosporine it might be able to soften up my sclerotic skin and help to train my stupid new immune system to stop attacking me.
So we are going to give the Gleevec a month to see how I tolerate it. If I tolerate it okay, then we are going to double the dosage. Then we will reevaluate the situation when I go for restaging at the end of October. If the Gleevec does not work, then we will do the photopheresis and that will suck, but oh well. I am optimistic that the Gleevec will work. That is about all I have to report at the moment. Nanu Nanu.
Hello, party people. Dr. Pavletic’s GVHD clinical trial definitely lived up to its billing. It was intense. On Day 1 (Tuesday), they drew an hilarious amount of blood. The phlebotomy tech actually looked at the size of my order, and said, “Oh no. Hey, Farhad! Will you do this draw? I’m trying to get out of here by 4.” It was like 3:15. It was something like twenty-four vials. He had to use an 18 gauge (fat) needle and keep switching out the vials quick or it would clot up. I met with my research nurse, my social worker, my nutritionist, and Dr. Pavletic. I had a bone density scan, an echocardiogram, and a venous consult at the apheresis clinic. Here’s a shocker; after twenty-three years of cancer treatments, my veins are shot. I’ve already informed the media.
Day 2 (Wednesday) began at 8AM with a CT scan. Fortunately they didn’t use contrast, because I’m allergic to it. I get a low-grade fever, aches, and chills. That only started after like my hundredth CT scan, so that’s weird. Then I went to dermatology. They took a pound of flesh out of my ass… literally. I’d post a picture, but I’m trying to keep this blog as PG-13 as I motherfucking can. That’s okay. The skin issue is THE issue. But damn. It sucks to sit on a big old biopsy wound. They took a chunk out of my stomach too… fuckers. Sorry. Shit hurts. Then I went to the liver/hepatology clinic, where they had a very large vulture… kidding. They just sort of consulted with me about my liver and my drinking. I’m kidding again. I never touch the stuff, MOTHER!!! Then I went to the Occupational Therapy Clinic, where they had me demonstrate my range of motion and do like a mall-walk sprint for six minutes. Then I went to the Cardio-Pulmonary Clinic, where they did a Pulmonary Function Test, which consists of me blowing into a tube in various different patterns of intense puffs and long slow breaths and stuff like that.
Day 3 (Thursday) began at 8AM with a consult with the Pain and Palliative Care Clinic. I asked them for the good shit. I’m kidding. They asked what illegal drugs I did, and I said, “Nice try, narc. Why? Is there some sort of sweet-assed Ecstasy clinical trial, or something?” They said, “Mr. Ryan, we’re not giving you Ecstasy.” So then I said, “Fine. I’ll just crawl over here into the corner and die… just as sober as hell. Will that make you happy? You guys are sitting on a mountain of pharmaceutical grade dope and you’re just stingy. That’s it. Y’all some stingy mutha-fuckas.” I’m not kidding. That entire conversation happened. I swear. I’m kidding. Christ. You guys are so gullible. I’m not asking my doctors for illegal narcotics in a federal institution. Geez. Anyways, I went from there to go have another hilarious amount of blood drawn… sober as fuck. Then I went to the Dental Clinic where the Marquis de Sade’s great-great-great-great- granddaughter took two oral biopsies; one from inside my right cheek and one from just in front of my lower gums. Just as sober as fuck. Then I went for an abdominal ultrasound. Apparently the law requires that I have to look at it now. Then I went to the Eye Clinic where I swear to God, they stuck these sharp cardboard sticks under my eyelids to see whether I could produce tears… which I could. See? I can cry. What? Get off my nuts and get some insurance.
Day 4 (Friday) started at 9AM in the photography studio. Yes, NIH has a photography studio. I was surprised too. It had a bunch of lights on booms and a big, white paper backdrop. This place is not fucking around. I had to strip to my skivvies. It was tasteful though. I cried, but he was gentle, so it was okay. OK. Then came the MRI. This was the worst part of the whole week… I think. They were focusing on my right arm, which is experiencing the most acute GVHD symptoms, so I had to get on the gurney and lie on my right side, but not entirely on my right side; kind of at a forty-five degree angle. And I had to have my left arm over my head. So I’m balanced precariously on my iliac and my left arm is asleep for like 45 minutes. Shit fucking SUCKED!!! So then I go and wrap up with the research nurse and get on the same page. Then I go for leukapheresis. It’s like donating plasma, except the centrifuge is made to harvest only leukocytes. The problem is that when the machine pumps your blood back into you, it is mixed with an anti-coagulant, so I sat there and bled out of my arm wound forever. Remember in The Crow when he squeezes the morphine out of her arm? It’s like that, except blood. And it isn’t all cool and stylized. It’s just sucky and embarrassing and I look like I’m a heroin addict in DC and shit. Anyways this is my cross to bear and at least I’m upright.
Alright, so getting on the same page involved a face-to-face that was to explain that they are going to take all of this data and get it all compiled and these motherfuckers are going to get into a room and POW-motherfuckin’-WOW over Yours Truly. I’m not saying that they are going to be able to defy the laws of physics, but I’d rather have that than Benny Hinn bitch-slapping me. So that’s the abridged version of what happened last week. Trust me, that’s as G-rated as it’s gonna get. My DC peeps can attest to that. Holler!
So Haley and I are divorced now. I think it would be inappropriate to use this forum to paint our divorce in any other light than unfortunate and try to leave it at that. It has been very difficult to come to terms with, but I am coping with it and moving forward with my life. I wish the best for Haley.
It has been a long time since I have posted anything. The process of the disintegration of my marriage caused me to be unable to honestly discuss my health issues on this blog. I did not want to air my dirty laundry and that was overriding the X’s and O’s of how my health was doing. So now the divorce is not so much in my face and I can get back to actually paying attention to this whole beating cancer thing.
Quick catch-up. I had a surgical biopsy a year ago which showed that the mass that was showing up “hot” on the PET scan was necrotic and/or scar tissue, and not cancer; just the scar of where the cancer was. Then chronic GVHD began to set in around the time of the last post. It affected my mouth, my joints, and my skin. My mouth was ridiculously sensitive to hot, cold, and spicy stuff. My gums exploded blood when I brushed. I actually lost a molar, because my mouth was such a train-wreck.
My joints and skin became tight. It is a condition known as sclerotic GVHD. http://www.ncbi.nlm.nih.gov/pubmed/21791415
It is as though the connective tissue beneath your skin has been traumatized (like in a fire or something) and it is scarred and you have to stretch through it, tearing through that scar-tissue. I feel like Wolverine tearing through my own skin whenever I really reach forward to stretch out my arms. Needless to say it’s weird. And not awesome like when Wolverine does it.
However, my physical health is greatly improving. I had a set-back a couple of weeks ago where I had a 104 degree fever for six straight days in 110 degree heat. I had to take an ambulance to the hospital on Day Three. It was just too intense, brah. It turns out I had an adenovirus, which I displayed all of the classic symptoms for. http://en.wikipedia.org/wiki/Adenovirus_infection
It’s always a mixed bag with me. I am posting now because I am going to participate in an intensive, week-long GVHD clinical trial next week at NIH. If you look at the link for sclerotic GVHD above, one of the investigators in that trial was Steven Pavletic. I am participating in his clinical trial: Natural History Study of Clinical and Biological Factors Determining Outcomes in Chronic Graft-Versus-Host Disease. Dr. Pavletic is from the Hutchinson Center in Seattle (“The Hutch”). That’s who wooed my last research fellow (Dr. Rachel Salit) away from NIH. Dr. Pavletic and my entire team of doctors are kind of a big deal.
So anyway, we now return to Bullitt, already in progress. The GVHD thing is really the last frontier. My new immune system is so hard and heavy that it really seems to have already whipped the cancer (not official; I am not in remission) and now it’s kind of whipping my ass a bit. I am still on prednisone and cyclosporine (immune suppression). I hope to someday live in peace with my new immune system. But right now he’s in his terrible twos, and it’s getting on my last nerve.
My third “new birthday” is October 29. I will get a full work-up. PET, CT, bone marrow aspiration, a pint of bloodwork, shoes, pants, clubs, balls, the whole schmear. So send me good vibes next week. I’m going to need it.
Thomas
P.S.
I will try to not go so long without posting something. What, is a post going to kill you? What do we know? We’re only your friends and family. All we do is care about you. No, fine. Don’t post anything. It’s fine.
Since Thomas’ last blog post he’s had 1 visit to NIH. The mass in his abdomen that was supposed to be “not cancer” apparently grew so they changed their minds again and now think it is cancer. Flip floppers.
The past month has been pretty tough for Thomas. He’s been trying hard to keep his law practice afloat but he also ran a fever for no apparent reason for about 3 1/2 weeks. He’s weak and tires easily and his weight is very low. Things seem to have turned around for him in the last 7 days, though. He’s feeling better and has been to work a couple days this week. He won a hearing on Tuesday, so that energized him a bit.
We’re going to NIH for the first part of next week and Thomas is getting the works; CT scan, Pet scan, bone marrow aspiration. Tuesday we’ll have a clinic appointment and maybe there will be a course of action. We’ll see what they find. Maybe Thomas has a small dwarf or toad in his body that is affecting his humors, a good bleeding may be in order (yes, Thomas, your wife is making bad movie jokes in your blog, this is your fault).
Thanks for reading. -Haley
So I think it was Monday evening when one of the doctors in my team (Steven Pavletic) came into my room, and told me that they found no evidence of lymphoma. Those words hit me like a ton of bricks. I thought that the next words were going to be that it was leukemia or some other form of cancer. He went on to say that the mass that they biopsied was scar tissue and necrotic tissue. That they got clean samples of what they had identified on PET as active disease and that what they saw under the microscope was not active disease.
Of course, he could not have given me better news. It is the kind of news that if I had predicted that that was what he was going to say, no one would have believed me. It is the kind of news that defies probability on an enormous order. So go team!! I will celebrate as soon as I catch my breath.
I spoke with my doctor on Thursday. She would really like to get a biopsy of this group of lymph nodes that are showing up “hot” on PET scans and they think is the disease. I had a CAT scan last Thursday and it showed that the active disease is smaller than it was prior to my DLI in February. So the DLI showed to be effective against the disease, but not completely effective. The results are at least positive in that I am getting graft versus tumor effect. That means at least the tumors are shrinking. However, it is still a problem that they are there at all. Again the treatments could still be worse than the disease. Radiation would cause serious problems in my gut that could kill me. More donor cells might not do the job and could trigger more graft versus host disease. The doctors would like to get a biopsy, but they are going to get back with me to let me know whether they think they can do it or not.
In the meantime, I have been getting out and running. I’m trying to be more like Matt Newsom. It is slow going, but I am not in a hospital bed and the disease is moving in the right direction, so I am happy with how things are going. I am feeling healthier and stronger, and just that I am able to run is rewarding after I had neuropathy in my legs and ankles a year or two ago. I’m doing pretty good and I am hoping that we are getting closer to a cure.
Hello, everyone. So I got a PET scan on Monday. It showed that my cancer was half as active as it was previously. So that is good news. I also got a flexible sigmoidoscopy, because I have been having pretty bad tummy problies. So as it stands the cancer is moving in the right direction. I just need to get the gut GVHD under control. They have put me on a fairly heavy dose of Prednisone to put the GVHD in check. After the first day on the Prednisone, my gut seems to be doing better. They hope that they can get me off the Prednisone fairly quickly, and I have to go back to a strict no fat, no roughage, no dairy diet. Hopefully the gut GVHD will resolve quickly and the donor cells will continue to do their thing against the cancer.
So, as usual, things are about as straight forward as a politician, and all we can do is hold on and hope for the best. As long as I am still posting blogs, things are going about as well as we can hope for.
I will do my best to keep you in the loop.
Hey everyone. This is Haley. I just wanted to write a bit about the week and how it went since Thomas’ DLI (donor leukocyte infusion). They gave him a syringe full of his donor cells to see if they can boost his graft v. tumor response and maybe take down the disease that way.
Since the DLI, his energy is in the gutter and he’s having symptoms of GVHD. I don’t think the GVHD is too bad at the moment. His platelets and white counts are also very low. Things are pretty rough on us; trying to figure out how to help him keep up at work and get the rest he needs is the biggest thing. I’ve been helping a lot on his cases and Laura has been coming into work a couple days during the week. Between her and I, we’re keeping it afloat but Thomas is really feeling the pressure.
We’re headed to DC (if they will ever give us the travel orders) sometime during the week of 3/15 for some more diagnostics to see if the DLI did anything. If the DLI turns out not to have been successful, then the next step would more than likely involve more chemotherapy. That leaves us feeling a certain degree of anxiety. We have continued to reach these precipices, which have collapsed beneath us. It is difficult to maintain our optimism in this situation.
He and I love each other so much. This whole thing has brought us closer together at times and driven us crazy at times, but the end product has been a regained strength in our marriage and resolve to keep fighting. We’ll get you an update as soon as we have diagnostic info here in a couple weeks or if anything important happens between now and then.
Thanks for hanging in there with us.
Admittedly Haley is better at keeping the blog current, but here I go. I had some elevated liver enzymes, and my doctors were concerned about GVHD of my liver, but after a week on a drug called Ursodiol (and decreasing my usual weekly number of jager-bombs), my liver enzymes went back to normal, and they gave me the DLI. DLI stands for Donor Lymphocyte Infusion. http://en.wikipedia.org/wiki/Donor_lymphocyte_infusion
Basically they had some leftover donor cells in the fridge, and they said “Well, we don’t want them to go bad.” I’m kidding. They didn’t say that… to my face. But seriously, the strategy is that by giving me more stem cells, they hope that they will boost my immune system to fight the cancer. So here we are at another precipice. I am not on any immuno-suppression right now. I am watching out for GVHD. As long as I don’t get any debilitating GVHD, then I will just cruise until I do my next diagnostic trip in a month.
I can tell that I am having a certain degree of GVHD at the moment. My gut is somewhat irritated and my energy levels are in the gutter. However, this is kind of a delicate balancing act. You want a little bit of GVHD, because it shows that the new immune system actually came to fight. But too much GVHD can kill you before the cancer gets a chance to.
I am looking forward to this next diagnostic trip because it is going to be around St. Paddy’s Day, and I am looking for an excuse to poop my pants other than GVHD. Kidding. I didn’t poop my pants. The dog did it.
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You can make an online donation to Thomas through the Bone Marrow Foundation. You can also mail a check to The Bone Marrow Foundation 30 East End Avenue, Suite 1F New York, NY 10028 Please be sure to put Thomas Ryan One-To-One Fund in the memo line. We have a huge goal ahead of us and every penny counts. Thank you for your donation and support! |
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Thomas Ryan Update 
