3 years on Ibrutinib/Imbruvica and a study involving fasting

Hi all,

I am celebrating an anniversary of sorts. On this day, exactly three years ago at the time of my sending this post, I swallowed my first capsules of Imbruvica/Ibrutinib which was then only called PCI-32765 in a Phase Ib Clinical Trial for Relapsed or Refractory patients at OSU under the care of Dr. John Byrd.

I continue to be in a remission hovering very close to a CR (Complete Remission) if not possibly in a CR since my last monitoring in late April. The only side effect that hangs on is brittle nails that rip and break easily. If any members are contemplating getting Ibrutinib/Imbruvica and are worried by recent postings of a possible connection to cataracts I would have to say that it would be a very rare condition and not directly related to Ibru/Imbru. If anyone might have been susceptible to eye damage, I tried out for the role because I had a very nasty dry eye side effect early on in the trial for which I was almost pulled off the Clinical Trial. I was put on a Cyclosporin based eye drop and the condition persisted for months and eventually resolved where I have no need for even ordinary artificial tears. Recent eye exam confirms a same size cataract noticed prior to my CLL Diagnosis in 2006.

My PM (pacemaker) has been keeping me free of arrhythmias so far and basically I would not know I had cancer if not for the daily reminder of taking the two Ibru capsules.

I have not been monitoring the computer or emails for awhile due primarily to health issues with my wife and apologize for not getting back to any inquiries. It may be two weeks before I can get caught up.

Because we are all wanting to help ourselves, I found an intriguing study involving fasting with chemo. This study is suggestive only and was conducted with very few subjects. I had been a once a year faster for six days every summer prior to my diagnosis. I have been interested in the effects of Autophagy both from fasting and drug inducement.

Since many of our community members will not have access to the new kinase inhibitors (Ibru/Imbru Idelalisib) and must be treated with chemo I thought this case history study on fasting might be worth reading and discussing with your respective Docs.

ncbi.nlm.nih.gov/pmc/articl...

Wishes for finding a good path to all.

WWW

6 Replies

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  • I have also been interested in the well-known effect of caloric restrictions on increasing longevity, especially on the resilience of healthy cells to caloric restrictions like fasting as opposed to cancer cells (which cannot seem to down-regulate their need for proteins and sugars). I just wanted to point out that not only chemotherapy treatments can benefit from fasting, but also radiation treatments (e.g., for SLL). See, for instance, the research here:

    sciencedaily.com/releases/2...

    In general, cancer cells are more fragile to external variables like caloric restrictions and to extreme heat.

    PS: Hey, Wayne, I hope your wife is feeling better.

  • Great news, hope your wife is feeling better. Sounds like you are doing really well and wish you the best of luck. I have started imbruvica nearly 6 weeks ago and hope I have the same effects you have been getting. I am curious to know why only 2 capsules. I am taking 3 capsules which I thought was standard?

  • Hi Phillysteve,

    You are correct that 3 caps at 420mg is standard dosing however my rather severe eye issue initiated a consultation with Dr. Byrd on whether I needed to switch to Idelalisib or drop Ibru for a time to see if the symptoms would resolve. I lobbied for staying with Ibru and close monitoring of eyes for any sign of damage. Dr. Byrd countered with the proposal to reduce Ibru to 280mg or 2 caps. I have been on 280mg for ~ 2 years.

    WWW

  • Thanks, its good to know we may have options in reducing the dosage in certain circumstances with physician approval. Good Luck!

  • Glad you are so symptom free, but hope Fay is on the mend. I am a big believer in fasting, but it can carry risks.

    Stay strong

    Brian

  • Glad you are back Wayne... my best to Fay...

    ~chris

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