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Steph's SLL/CLL
Case History
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Steph's SLL/CLL
Case History
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--> Click here for the latest info 1999 Treatment Archive
2000 Treatment Archive
2001 Treatment Archive
2002 Treatment ArchiveMarch 1st , 2006 Rituxan gets FDA approval to treat arthritis (most interesting) :
August 10th , 2005 Good News: Stephanie has not had a reoccurrence of SLL. She is continuing with the 6 month maintenance rounds of Rituxan. Her blood counts are still in the low end of the "normal range". Steph's immune system kept her healthy throughout the winter/spring.
April 2nd , 2004 (Update from Stephanie) "Thanksgiving 2003: right upper arm started to hurt when lifting. Rationalized the pain away, until January 5th. Went to doctor, P.A. couldn't figure it out, so labeled it tinninitus. Took x-ray, radiologist must've half-ass read it, and missed a large lesion, called x-ray negative. Friday evening, Jan 16th, while carrying some laundry, my right humerous (not!) broke. Big Pain!!!!! ER visit, assload of pain meds did not help. Immobilized the arm and told me to call the doctor Monday in the morning. (what what what?) Everyone kept asking me if the broken humerous was from a car accident. (i.e. very serious break). My sweet, sweet mom came to take care of me. Doc decided to do biopsy before proceeding, due to possible amputation if lesion was not SLL. It was SLL, CD20- and CD38+."
"Doc Miller says she has rarely seen SLL in the bone, but this was a renegade pack who, IMHO, reacted strangely to the not-yet-fully researched effects of Rituxin. Anyway, it wasn't until Jan 27th that they slid a steel rod into my arm. Warning: they gave me a nerve-block. I came out of surgery and didn't feel a thing, and decided, as any rational being would, to go home. Well, the 18-24hr nerve block didn't last 8hrs, and I didn't have time to get my pain meds on board. It was horrible. I went back to the hospital, admitted for pain management. My nurse was cold, and seemed to think I was over-reacting. After no sleep, the hospital's pain management team (I LOVE YOU GUYS!) came in and properly assessed my agony. It still took 2 days to get my pain under control. I was on a morphine pump, it made me hallucinate, but not in a pleasant way. I didn't sleep well because of it. Something called Teradol, a powerful anti-inflammatory worked best. I made them wean me onto the drugs I'd be taking at home before I left. Of course I caught pneumonia, and had a blood-oxygen level of 65 at one point. Hospitals suck. Though Atlanta Medical's got pretty darn good food, considering. I begged to go, they finally let me Feb1. Oxycontin affects sleep badly, though Xanax is a nice sleeping pill. I was still in considerable pain when I started 3 weeks of radiation. The pain minimized significantly after the 1st week of getting some beam on."
"Doc Miller re-assessed me with a bone scan, BMB, CTscan. Flow came back clean from Emory, bone scan showed only right arm activity, CTs were clean, but ole Cobb Hospital will never give me a clean BMB microsopic analysis, "minimal involvement". The last BMB, both the flow cytometry and microsopic analysis (accidentally) went to Emory, and everything came back clean. Will continue doing maintenance Rituxin, and will probly fly out to Hutchinson for opinion. I finished radiation March 15. They can't tell if they got everything until the bone grows back. I saw my Orthopedic surgeon on March 25, he says looks even better than he expected. I have a very irritated rash on the back side of my shoulder, and have been pretty bad about physical therapy (I quit going when my mom left), but I have pretty-much full motion, though it still hurts all the time- dull pain, and is weak. My spirits are good, at least it's not back full attack."
January 7th, 2004 Steph had another maintenance round of Rituxan today. It was long but painless. Steph is feeling well and her blood levels are all normal. We had a great Christmas and appreciate all the support we gotten over the last year (and beyond). Thanks!
January 14th, 2004 Steph had her final maintenance round of Rituxan. Things went smoothly. This will hopefully be all the treatment she will have until June. At that time Stephanie will have another bone marrow biopsy and CT scan. She may then undergo more treatment at that point.
December 2003 Steph and I are divorced. (My take: Steph wanted more out of the remainder of her life than I could provide.)
May 1st, 2003 Steph had her first Bone Marrow Biopsy of the year. The procedure went much better than expected (but was not void of extreme pain). The ladies who performed the procedure made thing much better with their skill, compassion, and sense of humor. She has a CT scan coming up Saturday.
May 9th, 2003 Fabulous news!!! Steph's BMB and CT scan results show a complete molecular remission. She appears to be disease free. We are both elated!!!!!
June 2nd, 2003 Steph went to Northside hospital to do preliminary work for harvesting marrow cells that will be frozen in case her cancer returns. In typical hospital fashion it took many hours more than expected. The good new is that no chemo will have to be given before the harvesting process. More as it develops.
June 9th, 2003 Steph had a temporary port put in today. The actual procedure only took around 30 minutes and only a local anesthetic was used. Hopefully the pain/soreness will be minimal later in the day.
June 10-14th, 2003 The stem cell harvesting literally took a lot out of Steph. She lost Potassium and other blood components which at one point became dangerous. She was weak most of the week and I took care of her until her strength returned. Ultimately they were able to harvest enough stem cells for 2 and a half BMT's.
October 15th, 2003 (roughly) ~ Steph went into see Dr. Miller for her normal CBC and checkup. Steph has been recover from a flu or food poisoning the previous week. Her Lymphocytes, Red Blood Count and Hemoglobin were all low. Hopefully these blood level will all be normal when Steph does maintenance Rituxan in December.
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