Confusion and Other News

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

Good News

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.

Things are complicated, but I am feeling good.

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.

One Step Forward, One Step Toward the Bathroom

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.

The Non-Update, Update

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.

OK, Folks. Cross the Fingers, Rub the Rabbits’ Feet, Do the Voodoo Dances

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.

Game Plan.

The plan is to give me more donor cells. The thinking is that by boosting my immune system, it might do more to fight the cancer. I am going to Bethesda this week, and I should be getting the cells on Thursday. The concern is that it might trigger GVHD. Hopefully it will do its thing, and no GVHD. We will probably have more diagnostics done in about a month.

Bummer, Man.

Okay, so I guess I had put off posting a blog until I had more definitive news. Haley has been doing a good job keeping everybody up to speed on the situation. Unfortunately, the news is not as good as we had hoped. After being off the immuno-suppression for about a month, the tumor in my abdomen has not gotten any smaller.

The plan now is to give me a couple of doses of a chemo cocktail called GVD, http://annonc.oxfordjournals.org/content/18/6/1071.full, and then to give me an infusion of more donor cells. You know I hate to be a Negative Nelly, but the more definitive news is that a cure appears unlikely. The probability is that I will continue to have remissions and recurrences for the rest of my life. Fortunately, this disease is such that I should still have a good life expectancy with this sort of continuing cycle.

I wish the news was more positive, but it is what it is. I am unable to spin it into more of a triumph. I still appreciate the support that everyone has given to me and Haley. I know you all are invested in hoping that I would be cured, and I am sorry for everyone involved. Know that I love and appreciate everyone who is reading this.

I refuse to wallow in self-pity or to stop pursuing every treatment option available to me. I will continue to fight, so keep following this blog. It ain’t over ’til it’s over, and St. Peter hasn’t informed me that it’s over yet.

-Thomas

Next Week We’ll Have Something To Say

On his most recent trip, Dec. 6th, NIH found that Thomas still had disease in his abdomen in spite of the fact that he had done a month of Rituxan in October (if you read the last 2 posts you’ll be caught up on all of this).  They said that, rather than load him up with chemo right away, they would pull him off of his immune suppression to see if the grafted immune system would go ahead and attack the cancer.  He was on the immune suppression medication for such an extended period of time (since transplant) in order to control the complication he had called Graft V. Host disease.  So the theory we are going on now is that, absent of the immune suppression, his graft will have the chance to do what it’s supposed to do and cure him.  The doctors said that if he still has cancer on his PET scan his trip next week that “there are plenty of treatment options.”

Needless to say, after just over 2 years of dealing with acute life and death type of treatments for his previously stage 4 cancer, we’re pretty disheartened by the news that he has disease progression.  The thought of having to do more chemo just sucks.  The thought that there is a possibility of him having gone through an entire bone marrow transplant and all the complications to have it not work is unbelievable.  The news from Arizona that they have stopped funding transplants of all types for all kinds of patients is infuriating and hits pretty close to home for us.  In dealing with all the grief we have we’ve also been grieving for those in AZ who have it worse at the moment.

Thomas has been doing a great job of keeping his chin up but I can tell he’s worried.  He’s been working extra hard to keep up with his work load in between visits and to prepare for the possibility of having to stay longer than expected next week. I haven’t been coping quite as well but I started belly dancing lessons and therapy, so that should help.

We’re feeling like the news we get on this trip is kind of a watershed.  Scientifically, I don’t know that this is necessarily the case, but at least in our view it seems as though we’ll know whether the bone marrow transplant worked or not based on whether he still has disease at this point (15 months post-transplant).

I asked Thomas to rate his doctor’s level of concern (1-10) in his last meeting with them, in his opinion, and he said a 6-7.  I asked him the same question about his own level of concern now and he said a 7-8.

We may be all worked up about nothing, but we’ve been looking for good news for the past few months and we haven’t been getting it.  We’re trying to be practical without being all gloom and doom but it’s a fine line to walk.  We’re doing our best. I’ll get everyone updated when we have some actual news next week.  In the mean time, hang in there, we will do the same.

 

Most Recent News

The News:

Thomas was back in DC Wednesday through today for another check up.  During his one year check up in October, they found a spot of cancer in his abdomen and prescribed a 1 month course of Rituxan, a common chemo drug.  Well, he completed that just before Thanksgiving and was getting the follow-up for that treatment this week.  Unfortunately, the spot is still there.   He certainly has stubborn disease. 

The Plan:

Currently, Thomas is taking immune-suppression drugs that are keeping his grafted immune system from attacking his body and causing the complication called GVHD.  Well, that same drug keeps his immune system from attacking the cancer cells as efficiently as it should too.  So Thomas will be tapered completely off of that drug as of next week.  Once he is off the drug for “a while” (not completely sure how long that is supposed to be) they will check that cancer again.  If it is still there they say there are a log of treatment options for him. 

So that’s the poop.  Happy holidays. 

-Haley