DLI Postponed For Now

Just when I had mentally prepared myself to receive my donor cells tomorrow, it turns out I won't be getting them after all. It has been a roller coaster of a week with the whole DLI situation...

This morning I woke up with even more lesions all over my body. Not only were they on the right side of my body, but they travelled to the left side also. When shingles is present on both sides of the body it's considered to be severe enough to get admitted to the hospital to get drugs intraveneously. This afternoon Chris went to Stanford to meet with my BMT doctor to get some pain medication for me. He prescribed vicadin along with another strong drug used to relieve nerve pain. This afternoon while I was at work, my BMT doctor called me to let me know that he had spoken with some specialists at other institutions (that have more experience with DLI's) and that they all agreed I should not have the DLI until my shingles are gone and I have been off of prednisone for a few weeks. I guess the chances of me getting life threatening GVHD are high with both having shingles and being on prednisone. So for now my donor's cells will be frozen until I'm ready to receive them.

Tomorrow I'm supposed to call both of my doctor's with an update on my shingles. If it gets any worse and/or I get a fever higher than 100 I will most likely have to get admitted for 5-7 days. My chemo will probably also be delayed for a couple of weeks, which I'm not very happy about.

PET/CT Results, Shingles, and DLI

I had my PET/CT scan last Friday and anxiously waited for the results all weekend. My BMT doctor was supposed to email me the results on Monday, however I never heard back from him. I finally got an email from him that night at home saying that he had been unable to read the report and was going to be out of the office on Tuesday so I would have to wait until Wednesday. I swear he was testing out my cardiac function by doing this!! Meanwhile, he scheduled my DLI (pending the scan results) for this Friday 10/28.

Today I went in for my scheduled oncologist appointment with the intention to get chemo. Because I won't be able to have chemo for 4-6 weeks after the DLI, it was pretty crucial for me to have this dose. Initially my oncologist was against me doing the DLI because she didn't want me to stop chemo, but after explaining to her that I would only have to stop one treatment (two at the most) and this could only be done with minimal disease she was more understanding of my choice. She's very concerned about me getting severely ill from GVHD, but as she stated "I know you would walk through fire if you had to, to get more time and/or control of this disease." She obviously knows me very well...I would do anything.

My counts today looked great, in fact I can't remember the last time they were this good. All my electrolytes were normal and I haven't even been taking any magnesium and potassium. There was one major problem though...I once again have a reoccurrence of shingles. Yesterday I started getting some sharp pains in my chest and right arm. I was really freaked out not knowing what it could be, but this morning when I got out of shower I noticed there were spots throughout my arm, chest, and leg. Right away I thought it could be shingles since I've had it many times and know what it looks like. Sure enough when my doctor saw them today she agreed. Because of the shingles I wasn't able to get chemo and it has been postponed until my spots scab and dry up. Of course this was terrible news since I wanted to have a dose of chemo prior to my DLI on Friday. I would have to make the decision whether to continue with the DLI or have my donor's cells frozen instead and infused later. Since I wasn't able to talk to my BMT doctor about this when I was at Stanford today, he called me at home tonight to discuss the whole situation. He has a very strong opinion about using frozen cells, he just doesn't feel they're as effective so he would prefer that I go through with the DLI or wait a while and collect fresh from the donor again. He said that it would probably be three weeks before I could have chemo again (that's how long it would take the shingles to dry up), so we might as well go through with the DLI since I have to wait anyway. So I have decided to go through with it on Friday and have a PET/CT done again in four weeks to make sure nothing is getting out of control. Meanwhile, I will be getting a prescription for Codeine and some other pain killers to control the pain from the shingles since Tylenol isn't doing the trick.

Now for the part you have all probably been waiting for...the results of my PET/CT. My oncologist said she had both "medium" and "good" news for me. The "medium" news is that the mass right outside my lung (the one that showed possible growth on the chest x-ray) is either unchanged or possibly a tiny bit bigger (about 1/4 of a cm). Either way the change is so insignificant that they don't consider it progressive disease. The good news is that the PET did not light up anything in the liver and mediastinal area. My oncologist isn't so sure that it could be that my disease is completely gone in those areas since they still show up on the CT (I guess Hodgkin's is notorious for not showing up on PET's), but it definitely means that the Velban I've been on the past few months has done its job. I think we're all pleased with the outcome and this is all the more reason to go ahead with the DLI.

So around 11:30am on Friday I will be getting my donor's cells. Just to think that they're on the plane right now making their way to Stanford is pretty amazing...

BMT Apppointment and DLI

This afternoon I met with my BMT doctor to get some questions answered about the donor lymphocyte clinical trial that we had been considering. It turns out that my BMT doctor and I were on a totally different page. I was thinking we were talking about a "killer cell" trial, while he was actually talking about doing just a donor lymphocyte infusion. He feels that the donor lymphocyte infusions are more effective and would be more worth the risk in my case. Basically how the infusion would work is that they would collect from my original donor next Wednesday 10/26, the cells would arrive on Thursday 10/27 (yes, from Germany), and they would be infused into me on Friday 10/28. My main concern as well as my oncologists' was stopping chemo meanwhile we do the lymphocyte infusion. I cannot receive chemo at the same time, because it would defeat the purpose of the infusion (the chemo would basically kill all the donor cells). I could still get chemo next Wednesday as planned, but then I would have to take a 4 week break from it to let the donor cells do their thing. The risk I take is that my tumor could start to grow again within those 4 weeks. And of course the biggest risk of all is getting graft vs host disease again. I will remain on prednisone though to try to eliminate that possibility and/or to make it less severe.

The way my doctor explained how the infusion could potentially work is that the donor T-cells from my original allogeneic transplant have now matured and are "tolerant to self." This means that they're most likely not recognizing my tumor as foreign anymore and by giving me some new donor cells they could again see my tumor as foreign and possibly shrink/kill some of it off. Again the likelyhood of this happening is slim, but it's worth a try. So now that I know a little more about what this consists of, how it could potentially work, and all the risks associated with it, I think I've decided to go ahead with it pending my PET/CT results from this Friday. I did find out today that my last chest x-ray did show some growth in my right lung. I knew that when my oncologist told me there was something "funny" showing up, it really meant something bad. The PET/CT will show a lot more detail as to what is going on and will help in the decision of whether we can stop chemo for 4 weeks to do the DLI and/or if we need to move on to a new treatment because this one has stopped working. My BMT doctor promised to email me the results of the scan on Monday. He also did confirm that the chimerism test I had done last week showed that I still have 100% donor cells (which would need to be the case to do the DLI).

Work has been going great. I've managed to work more than 30 hours a week since I went back, so Siebel is reinstating all my benefits, which I'm very happy about. Even though I wasn't paying for Cobra (they were), it's nice to know that when I do have to go on Cobra again I will be able to start my 18 months over. I'm just keeping my fingers crossed that whatever happens with my treatment the next coming weeks/months I will be able to continue working.

This weekend is the Nike marathon that Chris and I had been training for a while back. We're hoping to make it to the event on Sunday morning to cheer on our friends. It will also be a nice distraction for me, since I'll be thinking about the results of my scan all weekend.

Donor Update

I got a call from my BMT case manager on Friday letting me know that my donor had been contacted and they were going to be collecting her cells on Oct 26th and infusing them into me on Oct 27th (as part of the lymphocyte killer cell trial that I'm considering being part of). Originally my BMT doctor told me this would be an eight week process, so I was pretty shocked when all this happened so quickly. Since I still have many questions to ask about the trial, I'm supposed to meet with my BMT doctor this coming week. My PET/CT has also been scheduled for this coming Friday. I think the results of the scan will be the determining factor on whether to move forward with the trial at this time.

Work, Chemo, and Flu Shot

I'm back at work again this week and this time with my old HR group (HR Operations) doing some of the things I did before I left on medical leave. Although my body is not fully adjusted to the long hours, I'm really happy that I decided to return to work. I seem to be less tired during the days now that I'm distracted and have something to do. Plus it's nice to have the daily people interaction again. I worked full 8 hour days on Monday and Tuesday. Today I only worked until 3pm since I had to be at Stanford at 3:30pm for my oncology appointment.

Because I had to go straight to Stanford from work I had my labs done yesterday after work to make things easier. So today I saw my doctor as usual and then had treatment. My counts all looked really good, even my potasium and magnesium seem to have held up pretty well this time around. I also got a flu shot today. My doctor asked if I wanted one and I said "yes" primarly because I'm back at work and I hear people coughing and sneezing all day long. It's funny cause I'm so used to the subcutaneous injections (Procrit and Neupogen) and the flu shot is a muscle injection. Well the subcutaneous injections hurt A LOT more so this felt like nothing, I didn't even realize the needle had gone in. I wish all my injections were that easy and painless. I also had some more vials of blood taken today to check my donor chimerism. My BMT doctor has moved forward on getting everything done for the donor lymphocyte trial that we had discussed and that is one of the first steps. I had forgotten how much blood they always take from me when I'm back in the BMT team's hands!

I'll be back on the 26th for my next treatment. Meanwhile I'll be having a PET/CT done to see what is going on with my disease. I should get the results when I see my doctor again on the 26th.

Light the Night

Thank you to all of you who came out and walked with us on Saturday evening in Menlo Park (and fundraised)! Although it was a little cold and windy, the walk turned out to be a success. My friend Dave (aka "the artist") created the Snoopy Steppers banner, which turned out great - thank you Dave! I don't know the details yet of how much our team raised or how much was raised by all the teams that night, however as soon as I find out I'll let you all know. There's another Light the Night walk on October 22nd in San Jose for those of you who missed out on this one, but still want to participate. Finally, I want to thank my friend Abby for all her help with Light the Night. She was our team captain and worked very hard on fundraising and getting everything organized - thank you Abby!

First Week At Work

I made it through my first week back at work! I won't be going in tomorrow since I'm very exhausted, but I will be back at work on Monday. I'm looking forward to sleeping in, resting, and taking it easy tomorrow. I was actually surprised at how well I held up all week. Normally I have to take a nap by 3pm because I'm so tired, but since I was back at work I didn't feel as tired in the afternoon. I think part of what makes me so tired is being bored at home. In fact, I think the hardest part has been the drive to San Mateo in the mornings/afternoons...I always seem to get sleepy in the car.

I got the official confirmation from Blue Cross today that my benefits are active again and I'm in their system. Finally, it looks as though everything has been resolved and I can finally get my prescriptions filled.

Last week there was an article on CNN.com about my BMT doctor and his protocol (the 2nd transplant I had done), which I found to be very interesting. Here's the link for any of you interested in reading it: http://www.medpagetoday.com/HematologyOncology/LeukemiaLymphoma/tb/1834. The article mentions that 2 of 37 patients developed GVHD...of course I was one of those lucky two.

Back To Work

Today was my first day back at work. I must say it wasn't easy waking up early and driving all the way to San Mateo, but I did it. Not only did I make it there, but I managed to put in a full eight hours without getting too tired. I definitely was ready to go home by 5:30pm and was exhausted the remainder of the evening. Usually when Chris gets home there's a home cooked meal waiting and then I have the energy to go for a walk, but tonight all I wanted to do was lie down (the gourmet meal days are over). Back to work tomorrow, I hope I get used to the daily routine...