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...
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...
posted by Erika @ 9:49 PM
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