As I've been saying the last few days, I haven't felt right. Then last night I spiked a fever again to 100.8. And had chills and night sweats. I don't know where the fever is coming from because I am still on 2 pretty wide spectrum abx (Vancomycin & Ceftriaxone). Hopefully I can convince them to re-culture me today and take a look at this Hickman catheter which is a little red at its insertion site in my chest.
I had a confusing visit with my Oncologist/ Bone Marrow attending yesterday. I'll try to explain the medical/clinical issues here so that everyone can understand the question. When my leukemia was discovered they did some cytogenetics tests on the leukemia cells. They showed an abnormality in the DNA of the leukemia cells involving chromosome 16. The finding is called inversion 16 because a part of the chromosome detaches, flips, around and then re-attaches. So what, you're thinking. Well inversion 16 is one of the few things with my kind of leukemia that is good news. It is a type that responds to chemo much better than most kinds; in fact there is a 70-80% cure rate for AML with inversion 16 if you use standard chemotherapy. So now my doctor is trying to figure out if it would be better to treat my AML like a typical AML inversion 16 and "just" do chemo, forgoing the bone marrow transplant until or if I relapsed. The big issue is whether this came from the breast cancer treatment or not and hence we should just go on to the bone marrow transplant. It makes me a little nervous to have a rare-ish disease (only 14,000 new cases of AML every year) and then to have the unique past of breast cancer and the chemotherapy that preceeded it. It makes me a little nervous when the sub-specialist says that he needs to phone more experts to find out their opinion. And it makes me a little nervous to consider more chemo.
I'll be honest I had to cry on my way home from the clinic yesterday. I didn't feel well anyway from this fever and whatever that is, and the idea of taking another 4 rounds of chemo (the standard for inversion 16) made me upset. As I explained to Dr Long, the first time I had chemo I lost 14# and was sick all the time. This last time I lost 8# and was sick all the time. After 4 more rounds of consolidation therapy who knows how much I'd lose. But mostly it's the nausea and vomiting I don't relish repeating.
So each round would be chemo (high dose Ara-C) two times daily on Days 1, 3, 5 in the hospital. Then I'd have a recovery period of 4-6 weeks between each round for 4 rounds (I need to email my boss and let her know I might not be back as soon as I had hoped. September is definitely looking way too optimistic). So if we started that in the next month, I might be done by New Year's. Ouch! Of course we don't really know what the bone marrow transplant entails and that can be full of complications too.
I just worry that my bone marrow has already revolted from 6 rounds of chemo for breast cancer. What will it do with an addtl 4 rounds for AML? I need to ask my Uber hematologist from UNC Dr Lee Berkowitz his opinion. He is the one who made the diagnosis of AML in the first place and has continued to stay involved in my care. He is the greatest guy and a really compassionate doctor. I'll email him the latest conundrum and ask his opinion.
Well hopefully I was able to explain the clinical question well enough for everyone to understand. If not, I'll refine it more if you leave me questions or comments. I'll post later when I have my lab numbers.-tree
6 comments:
Tree, I am sorry that you are now faced with an unclear path ahead. I feel for you. I hope your tears were cleansing--it really is amazing what a good cry can do for you.
As you described the clinical details of the two possible treatment paths, I was reminded of the challenging backpacking trips I have taken (sometimes reluctantly) with Laurie and her twin sister Chris. There were times along one particularly difficult section of backpacking through a bouldery mountain pass in Lake Clark National Park when I thought I couldn't take any more. There were always moments of light and hope, literally and figuratively, that appeared out of nowhere to help me move ahead. For instance, after a long day of hiking up a pass, seeking shelter from an early evening thunderstorm under a very small rocky overhang for an hour and then scaling a steep, rocky bluff, we came upon a lovely collection of small alpine meadows fractured by rocky outcroppings and huge boulders and decorated with miniature alpine wildflowers. There was evidence that sheep had also found refuge there. Rather than pushing on across a glacial stream and up a steep scree slope to reach the top of the pass as we had originally planned (god knows how far it actually would have been and long it would have taken!) we stopped (about 9 pm). We had an evening in a magical campsite, sheltered from the wind by the boulders, and enjoyed one of those lucious camping dinners that only taste marvelous because it is so restorative for the complete exhaustion of body and mind.
I know that I cannot really know what you are experiencing now, but I hope that as you negotiate this difficult path, the way ahead will become clear. I also hope that a beautiful resting place will appear that provides a peaceful place for contemplation and rest.
Much love, Julia
When do you go back to clinic? Are you going every day this weekend, or will you get a day off? Kinda scary with the fever. So, you would rather have the transplant than a lot more chemo. That's understandable. Which one has a better outcome in the long run? Once you get past the transplant or the chemo, then what? I hope you feel better soon.
Love,
Beth
Dear Tree, I hate hard questions with unclear answers. I do believe, though, that the answer will become clear to you. I don't think you have enough info yet to steer you in one direction or the other. Thankfully, I don't think you are in a position to have to make an immediate decision. You do have a little time to really think about this and research your options don't you? I wish I knew some oncologists/hemotologists that I could ask. Maybe some of my docs know some that we could ask their opnion. I'll let you know. I truly wish I could bear some of this for you! Please stay positive as you have been! Give Holly my love. I love you lots! Becky :)
I'm glad your Mom is coming up. I'm sure Quigley and Holly are too. There's nothing like a nurturing Mom.I think that you might also notice a little extra step in Quigley's strut.
What will they do if they start to agree with you that the Hickman catheter is the infection site? Will they take it out, get the infection resolved, and then reinsert a new catheter? I don't have any idea what the alternatives are, or what the considerations might be.
You may have noticed the retracted comment? I saw a typo in my original and couldn't stand the blemish. I wondered if it would let me edit the text. The answer is NO...Marty told me that I was breaking new ground....It did let me copy and paste and edit the original into a new comment after I deleted/retracted the old comment.
July 5, 2008 9:17 AMamtcor
Well, sounds like the catheter needs to be changed...could explain the source of continued infection despite high powered antibiotics. Are any of your teeth bothering you? Of course, could be viral. Have they done EBV and CMV titers and such?
Man, Teresa...it must not feel too reassuring when your specialist(at Duke for goodness sake!) is confounded. I totally agree that you need to run this past the UNC guy...and what about a courtesy call to Chris Chay up here in Asheville? He's a super-smart, super-nice guy. I'd be happy to run it past him for his thoughts/opinion if you want. Just say the word.
I know the thought of chemo is terrifying and awful. But, you know a bone marrow transplant isn't a walk in the park, either. If it's an 80% cure with the chemo regimen, that's very, very promising. I guess I'd want to know about the cure rate with BMT vs strict chemo and then about complications/adverse outcomes of either pathway. The chemo regimen, though awful, is a known entity. Whatever path you follow, your mind and spirit and body are amazingly strong and cared for and will see you through this. I'll do some reading and research on uptodate(do you have access? want me to send you some articles/reviews?)
sh
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