BinghamBooks - Another Perspective

Watch and Wait

January 3, 2014

I saw my oncologist yesterday. He said I am finished with the Chlorambucil. It has accomplished what it can. The long-term risk of damaging my body outweighs the short-term benefits continuing on the drug might provide. I am again in a “watch and wait” period.

It is unclear at this moment if my body Read More

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Time Out: Chlorambucil

December 15, 2013

Tags: CLL, Chlorambucil, Red Blood Cells

The only decision made on December 3rd was for me to stop taking Chlorambucil for a while. All indications from the blood tests are that it is working at bringing my CLL under control. However, my red blood cells are also decreasing. My hematologist/oncologist said it is unclear whether Chlorambucil is responsible for Read More

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December Decision

November 8, 2013

Tags: Chlorambucil, Ibrutinib

After meeting with my oncologist last Tuesday there is some good news and some disappointing news.

The good news is my white blood cell count continues to decline. From a high of 161.5, it is now 42 (normal is 4-10). The Chlorambucil is clearly doing its job. I have more energy and on occasion recall what Read More

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That Burning Sensation

September 28, 2013

Tags: Chlorambucil, CLL, Dr. Castro

After last Tuesday’s dose of Chlorambucil, I had an intense burning sensation fill me. It felt like I had a fever: violent chills, shaking and a headache. I was miserable for about 4 hours until these symptoms went away.

This was a nasty enough experience that doing it again in two weeks left me Read More

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A Week to Recover

September 19, 2013

Tags: Chlorambucil

When I went for my latest dosage of Chlorambucil, I was told I’d had a mixed response to the first two dosages. My white blood cell count has dropped impressively but my lymph nodes have not reduced in size. Consequently the doctor decided to increase the dosage. I took 31 pills last week instead Read More

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Comments

Sep 19, 2013 11:09 AM EDT

John, thanks for sharing your experience-- you're in my prayers, and I hope the medication effects aren't as painful next dose as you continue your recovery. -- Mark Peterson

- Mark Peterson

Sep 19, 2013 1:01 PM EDT

Hey John - I'm sitting here in Minnesota looking out the window after a much needed heavy rain and thunder storm. How different it is now. The sun is out and the juvenile hummingbirds have returned to drink the sweet nectar which is strengthening their tiny bodies for their journey south. As I observe this, it makes me wonder what sort of positive imagery you could give that fiery feeling inside your body when you've taken those 31 little pills. Perhaps there is no imagery powerful enough to help reduce those heated hours. Or, maybe, just knowing what to expect will provide you with the strength to endure. This is surely a test of your strength and patience to navigate the unknown...not the first time in your life. Prayers are with you on the wings of each small effort made to reach a new level in this treatment. Sending you courage and hope as you move forward!

- Vicki

Sep 20, 2013 8:13 AM EDT

Hi John,

Just wanted you to know that we are keeping you in our prayers for recovery, health and energy. We love you and are proud of your strength and determination in this battle. Hope today and days forward get better and better and on difficult days, the love of God, family and friends lift your spirits. XO

- Jennifer Pedersen

Sep 21, 2013 6:57 AM EDT

Sorry to hear about your CLL, John. You are probably keeping up to speed on resources already, but if not you could take a look at the upcoming CancerCare telephone briefing on CLL developments: http://www.cancercare.org/connect_workshops/370-update_chronic_lymphocytic_leukemia_2013-10-04

Even when you are engaged in a course of treatment and a clinical trial, it's good to know current thinking.

There is no exhaustion like the deep fatigue of chemo. Hang in there.

As it happens I've had some relevant experience. Let me know if you want to trade emails or talk by phone.

- Richard McCandless

Sep 24, 2013 5:54 PM EDT

I am so sorry to hear that the bigger dosage had such an uncomfortable impact on you. Hopefully you will not have the same reaction @ next go-round. You are in my thoughts and prayers.

- Gretchen

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