If you remember from my last post, I was waiting to find out what is going to happen next. Well, I found out, and here is the new plan. They are still concerned about the 'shadow' on my lung. If I wasn't going into the clinical trial they might have ignored it, but because they have very strict entry requirements they want to make sure that I don't have anything else wrong that could skew the results of the trial.
So next Wednesday I go down to La Jolla for the 'consult' about the procedure. Then the next week on the 19th I go down for the actual procedure. Now why in the world I can't do both on the same day is beyond me, but that is the plan. I guess because of the type of procedure they need to give you time to 'back out' if you want to. I told them I don't want to 'back out', but it didn't matter. So then we wait until all the experts figure out what is going on. Right now it could be one of about 5 things. A previous scarring from some past illness, a precursor to pneumonia (the one that Donna had, but I didn't get), a nodule of leukemic cells, a fungal infection, or something more serious. Right now they are 95% sure it is one of the first 4. If it is something simple I may begin the treatment in May, but if it is something else, then it may take a while to clear up.
What is hardest about this whole thing is the waiting and the uncertainty of it all. I already have enough of that going on and now this on top of it. I was very excited to begin this trial (and still am if it is to happen).
Terry
4 comments:
Oh man....always something! I'm praying for you buddy and I know your going to tackle this and put it all behind you very soon. If you need anything, please let me know. Love to you and Donna, Beverly
Hey Terry,
I was wondering what was going on with you. :o) Did I tell you that I have gone from 80% CLL in my bone marrow down to 23%? That is all from the ABT-263! Rituxan doesn't clean out the marrow. I will be praying for you concerning the lung thing. Maybe it is scar tissue from living in Southern CA! I know here in AZ everyone has a Valley Fever scar who has lived here any length of time. That is a bummer they can't start on the same day. Abbot is a pain to deal with at times but I do think that Sheila is better at dealing with them then the nurses in Tucson are. I miss her and Dr. Kipps! I just couldn't afford to do the trial in La Jolla. There is a lot of going back and forth in the beginning. Do you know if the ABT is going to be liquid like mine is or did they get the pill form? Be prepared for a very yucky taste!
Talk to you soon,
Lori
Hi:
I've been reading your blog for a few years. My husband was diagnosed with CLL approx. 6 years ago as a result of a biopsy post-prostectomy. His CLL is dormant, however in an examination 6 months ago, our physician noticed a "shadow" near his colon. After PET scan, CAT scan, 2 biopsies, it turned out that he had an infection which had been developing as a result of sloppy surgical work from his prostectomy 6-years ago, whereby a "Stitch" was forgotten, became infected over a period of time...and you guessed it, was surgically removed.
Sorry for such a long-winded response...but there's hope when "shadows" appear. Nevertheless, all the worry involved & tests, can drive one to drink. "Keep the faith" and all the best to you!!!
JWF
Please know that Jeff and I are thinking about you and wish you the best success. Love to you and your family, Megan
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