My apologies for the delay in updating my blog. I have had some technical challenges with my laptop and I am not a pro at posting from my cell phone yet, so I have just remained silent. I am grateful for all of you who post a comment of concern or who drop me an e-mail to inquire if I have returned to the "slammer" (aka ICU).
The PICC line site healed well and I have not developed any infections from that procedure. We realize that removing it may result in my turning around and having to have another line inserted if the fungal cultures are positive from either the sinus or lung scopes from last month.
I continue to run periodic fevers and have a productive cough. I anticipate the end of this week will be the earliest that we might receive preliminary fungal cultures from the two scopes. More likely, it will be another two weeks. If these fungal cultures are negative, then I believe this will be a stronger indicator that my NIH physician's suggestion that the leukemia might be infiltrating my lungs is accurate. And while we always view fevers in the context of infection, fevers also can be a "B symptom" of leukemia - symptoms that can indicate that the leukemia is progressing. This past week, I reviewed this list of classic "B Symptoms" and was quite alarmed to realize that I now possess every symptom on the list.
I have remained very fatigued - some days just the motions of everyday life seem very overwhelming, yet I attempt to strive on and maintain some normalcy in my life. In the midst of the physical fatigue, a deep, brain fog presides over my thinking - another reason my blog updates have been sparse. Some days just formatting a paragraph seems to zap my energy. I have been researching to see if I can locate any chemotherapy protocol that could be survivable for an end stage patient.
I vacillate between feeling a moment of temptation that yearns to strike the leukemia with a potent weapon of destruction (chemotherapy) to returning to my current state of engaging only palliative care options. I will not move ahead until I have clear peace and guidance that only the Holy Spirit can provide to me.
The current chemotherapy protocol that I have been reviewing is from an Italian clinical trial. I have corresponded with the primary investigator in Italy. This protocol studied the chemotherapy agents Fludarabine and Cytoxan, used in low doses in an elderly population of patients. The reasoning was that this elderly population could not survive standard chemotherapy doses. While my age is far from being considered "elderly", it is doubted if my body can withstand many chemotherapy protocols due to my lengthy leukemia battle and fractured immune system. I have taken full dose Fludrabine in the past and it is the drug that wrecked serious havoc with my T-Cells (vital immune system cells). The last dose of Fludarabine I took was in 2004 and six years later, my T-Cells remain at very low levels. I have never received the other drug, Cytoxan. If I decided upon this Italian protocol, I would have to convince my physicians and the insurance "gods" to approve it for me. This protocol would mean 4 days of chemotherapy every 28 days for four to six months.
Two other alternative treatments that I am considering are also widely used in Europe but not in the USA. Mistletoe extract (Iscador) has been estimated that 40-60 percent of European oncologists are using Iscador with their cancer patients. The other possible alternative treatment is Carnivora (extract of the Venus flytrap). I am researching both of these options. Interestingly, one recent study on Iscador reviewed its use with Cytoxan (the chemotherapy drug I mentioned above) and the Iscador increased the effectiveness of the Cytoxan.
Decisions such as the ones that I am facing are not made without much prayer, much research and much reflection. I ask that you continue to uphold me in your prayers. I want God to reveal the path He has for me to pursue. I know MY plans will not succeed without Him. Proverbs 16:9 reminds me: "A man’s heart plans his way, but the LORD directs his steps." I can make all the plans in the world, but I desire for the Lord to be directing each step. He doesn't make mistakes like I do!
1 comment:
Stacie,
Thank you so much for the extensive research and useful information you have passed on to those of us who may soon be following in your path of dealing with complications from CLL.
Even with all of the pain and suffering you have endured, it amazes me that you can give us this invaluable gift.
You surely are filled with the Holy Spirit. "(You) can do all things through Christ who strengthens (you).".
You and your family are in my prayers every day.
All the best.
- David
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