Update on Marian

I was hoping for no change in Marian's numbers, but her white count has gone up to 53.8 and her platelets have dropped to 92. She is also slightly anemic. There is no crisis and she does not absolutely have to start treatment immediately. But Dr. Flinn advised that there is no benefit to delaying it either. The trend in her bloodwork has been consistent and the CLL will only continue to progress without treatment.

The biggest change today was in her platelets. But as the anemia increases, she will start to feel more fatigue. So we discussed all of her treatment options. Dr. Flinn knows we prefer something milder than chemotherapy because of her age (78). And he agrees. After seeing what John went through with FCR, I had strong reservations about Marian doing such strong treatment. It could severely impact her quality of life by compromising her immune system permanently.

At this time there are several clinical trials open with milder therapies. He gave us a run down of all of them. And the one he recommended as his first choice is CAL-101 in combination with Rituxan. CAL-101 is administered orally. Rituxan is administered by weekly infusions over eight consecutive weeks.

While she could safely put off treatment for another month or two, if necessary, the down side to doing so is that clinical trials open and close without much advance warning. Two or three months from now, the same trial that is open today may no longer be accepting new patients. There is nothing really to be gained by waiting. And she might as well get this behind her, since she is only putting off the inevitable by procrastinating. Personally, I would like for her to have the infusion part over with before the Christmas season rather than be going through treatments during the holidays. That was such a bummer last year for John and me.

So, as of right now, Marian will be having a bone marrow biopsy and ct scans the last week of September (next week). And she is scheduled to begin therapy the first week of October. Since she will have to go to Sarah Cannon weekly, the plan is for her to spend those eight weeks here with us so I can do my care giving magic. Not really. I don't know any magic. But I do have the gift of nurturing, I adore my mommy-in-law, and I have been down this road with John already. As they say, I know the drill.

Lillian will be here for her consultation at Vanderbilt on September 30. What she has ahead of her will be harder than what Marian is currently facing. But she will have her husband, Bennie, by her side. And she will have me as additional support.

I just need to stay healthy in the upcoming months!

*By the way, I almost forgot ... There is going to be an article in the Tennessean tomorrow (Wednesday) focusing on Sarah Cannon, Dr. Flinn, and CLL. I don't know what all will be contained in the article or what the specific focus will be. But John was interviewed by phone this morning and he may be quoted. I will post a link to the online version.

Comments

Larry aka Mega said…
Shari: i had no idea that you had so much sickness in your family. i knew about your husband, John, but, not some of the rest.You truly do have your hands full, but, being the trooper you are, I know you and God can handle it. Besides, God is open 24 hours a day. Smile. God Bless: larry aka Mega
Deb Light said…
Sorry to hear Marian needs treatment but many are having success with the Cal-101.We will be praying for Marian, Lillian,and John and for you to stay healthy for all three!You are a great caregiver with a special gift for nuturing!

Look forward to the article on Dr. Flinn and CLL.John was a good one to interview for this for sure!

Love Ya,
Deb

www.cllcfriends.com
Shari said…
Thanks.

The article focused on the importance of clinical trials and there was quite a bit about CAL-101. I thought it was an excellent article.

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