Difficult Decisions
Today was quite an interesting day full of information and decisions. I'll start out with my experience at Stanford...
I went in for my usual labs and a chest x-ray and then waited to see both my oncologist and BMT doctor. My BMT doctor came into the room first and asked me a question that caught me by surprise. He asked what I wanted to do in terms of my treatment. I guess I should have known what he was talking about since the last time I saw him we briefly discussed the possibility of doing donor lymphocyte infusions, however it just caught me off guard. We talked about how my disease has been stable the past few months and how he considers the amount of disease that I have right now (well as of my last CT scan in July) to be "minimal." He still believes that this is not attributed to the chemo I've been on, but rather to the donor cells I received from my second transplant. My oncologist of course thinks differently, she believes that it's the chemo that's keeping my disease stable and not the transplant. No one will ever know for sure, it could be a combination of both (that's what I think). Anyway, there's a new clinical trial being done by the BMT team at Stanford involving cytokine-induced killer cells. I don't know all the details/specifics involving the trial, but basically they would be giving me more donor cells (considering my donor is still available/eligible to donate). There is a chance that this trial could decrease my disease, put me in remission, do nothing at all, or make me VERY sick (life threatening sick) by causing me to get GVHD. The reason my chance for severe GVHD would be high is because I recently had an outbreak of skin GVHD. Usually this trial is done on patients who haven't shown a sign of GHVD within a year. Both him and my oncologist are very concerned about this and don't know if the risks are worth it, but will support me 100% on whatever I decide to do. Ultimately they know that I will do anything and risk my life entirely for any chance of remission, cure, or even more time. I've been through so much the past three years and I just can't see me not taking the risk. I am still planning to do some research on it. It will take approximately eight weeks for my donor to be contacted and re-tested so I have time to think about it. Meanwhile, I will continue with my chemo and after the next round I'll have another PET/CT scan to evaluate my disease again and see if this is still a viable option.
Another thing that my oncologist and I discussed today is the possibility of doing something called "ablation" to the mass in my liver. Ablation is the use of radioactive waves to ablate a tumor/mass. They usually don't do this to the liver because of the side effects (hepatitis being the riskiest one), but it's something that she will consider looking into. Again this is something that I have discussed with her in the past and we're just now starting to talk about it more seriously. She seems to be very pleased with the way I'm responding to Velban (the chemo I'm on now) and would prefer that I don't put myself at risk for other complications, but is very supportive of whatever I choose to do.
After all the treatment talk I got my blood counts, which were great, and I got the "go ahead" to do chemo. My chest x-ray didn't seem to show much change and although they did see something kind of funny on it, they think it might have been positional and will look into it further when I have the PET/CT done. I did have to get some magnesium by IV with my chemo today since that was a little low. I'm scheduled to return in two weeks again for my 14th round of chemo.
The other big news of the day is that I'm returning to work starting next Monday. I know this is probably a big shock to most of you, but it's actually something I've been considering and wanting to do for the past few months. I had gotten the okay from my doctor a few weeks back and had told Siebel about it and they were looking into finding a position for me. Part of it had to do with the whole insurance problem, but really I miss the daily interaction with people and just really enjoyed working there that I wanted to go back. This morning I talked to my former boss as well as another person in HR and they asked me if I could start on Monday. I'm not sure exactly what I'll be doing yet, but most likely it will be helping out in either the stock, benefits, or employee service center areas of HR. I'll probably start out working approximately 20-24 hours a week and if I can handle that I will try for 30 hours so I can get back on regular benefits. I'm beyond excited about this opportunity, but at the same time I'm very anxious about returning to work since I'm not sure if I'll be able to handle it. It's very unpredictable how I feel on a day-to-day basis, but I'm willing to give it a shot. Fortunately Chris works pretty close so we will most likely be able to carpool, which will help out. Now I'll just have to see if I can fit into all my work clothes!
That is all the news for now...hope I haven't overwhelmed you :P
I went in for my usual labs and a chest x-ray and then waited to see both my oncologist and BMT doctor. My BMT doctor came into the room first and asked me a question that caught me by surprise. He asked what I wanted to do in terms of my treatment. I guess I should have known what he was talking about since the last time I saw him we briefly discussed the possibility of doing donor lymphocyte infusions, however it just caught me off guard. We talked about how my disease has been stable the past few months and how he considers the amount of disease that I have right now (well as of my last CT scan in July) to be "minimal." He still believes that this is not attributed to the chemo I've been on, but rather to the donor cells I received from my second transplant. My oncologist of course thinks differently, she believes that it's the chemo that's keeping my disease stable and not the transplant. No one will ever know for sure, it could be a combination of both (that's what I think). Anyway, there's a new clinical trial being done by the BMT team at Stanford involving cytokine-induced killer cells. I don't know all the details/specifics involving the trial, but basically they would be giving me more donor cells (considering my donor is still available/eligible to donate). There is a chance that this trial could decrease my disease, put me in remission, do nothing at all, or make me VERY sick (life threatening sick) by causing me to get GVHD. The reason my chance for severe GVHD would be high is because I recently had an outbreak of skin GVHD. Usually this trial is done on patients who haven't shown a sign of GHVD within a year. Both him and my oncologist are very concerned about this and don't know if the risks are worth it, but will support me 100% on whatever I decide to do. Ultimately they know that I will do anything and risk my life entirely for any chance of remission, cure, or even more time. I've been through so much the past three years and I just can't see me not taking the risk. I am still planning to do some research on it. It will take approximately eight weeks for my donor to be contacted and re-tested so I have time to think about it. Meanwhile, I will continue with my chemo and after the next round I'll have another PET/CT scan to evaluate my disease again and see if this is still a viable option.
Another thing that my oncologist and I discussed today is the possibility of doing something called "ablation" to the mass in my liver. Ablation is the use of radioactive waves to ablate a tumor/mass. They usually don't do this to the liver because of the side effects (hepatitis being the riskiest one), but it's something that she will consider looking into. Again this is something that I have discussed with her in the past and we're just now starting to talk about it more seriously. She seems to be very pleased with the way I'm responding to Velban (the chemo I'm on now) and would prefer that I don't put myself at risk for other complications, but is very supportive of whatever I choose to do.
After all the treatment talk I got my blood counts, which were great, and I got the "go ahead" to do chemo. My chest x-ray didn't seem to show much change and although they did see something kind of funny on it, they think it might have been positional and will look into it further when I have the PET/CT done. I did have to get some magnesium by IV with my chemo today since that was a little low. I'm scheduled to return in two weeks again for my 14th round of chemo.
The other big news of the day is that I'm returning to work starting next Monday. I know this is probably a big shock to most of you, but it's actually something I've been considering and wanting to do for the past few months. I had gotten the okay from my doctor a few weeks back and had told Siebel about it and they were looking into finding a position for me. Part of it had to do with the whole insurance problem, but really I miss the daily interaction with people and just really enjoyed working there that I wanted to go back. This morning I talked to my former boss as well as another person in HR and they asked me if I could start on Monday. I'm not sure exactly what I'll be doing yet, but most likely it will be helping out in either the stock, benefits, or employee service center areas of HR. I'll probably start out working approximately 20-24 hours a week and if I can handle that I will try for 30 hours so I can get back on regular benefits. I'm beyond excited about this opportunity, but at the same time I'm very anxious about returning to work since I'm not sure if I'll be able to handle it. It's very unpredictable how I feel on a day-to-day basis, but I'm willing to give it a shot. Fortunately Chris works pretty close so we will most likely be able to carpool, which will help out. Now I'll just have to see if I can fit into all my work clothes!
That is all the news for now...hope I haven't overwhelmed you :P
posted by Erika @ 9:28 PM
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