Monthly Archives: December 2013

Christmas Challenge

Merry-Christmas-from-Bloggertone

We cancer people are masters of keeping on a brave face for everyone around us. People often ask us how we’re doing and we just instinctively say fine. Much of the time, we’re not fine but not many really want to hear about it. Your Christmas challenge is to ask a close friend or family member battling cancer how they’re doing. When they say just fine, ask them. No, how are you really doing? Then, just listen and hug them.

Merry Christmas to you all

 

This is going to be the final post here. Thank you for reading my adventure..

Partial Remission?

Just in time for Christmas and after four treatment cycles on IPI-145, I have made it to a partial remission! I am reblogging/reposting a recent post of mine from November 20 that lays out the accepted definition in CLL according to the IWCLL. Thank you for your ongoing support and prayers.

Lymphocytic Ninja Warrior

Screenshot from 2013-11-20 14:18:59

From what I’ve read, this seems to be the minimum goal for success in treatment of this CLL but a definition has eluded me until now. According to the journal “blood” 2008 111: 5446-5456 Prepublished online January 23, 2008;doi:10.1182/blood-2007-06-093906 it is:

5.2. Partial remission (PR)
PR is defined by the criteria described in sections 5.2.1, 5.2.2, or
5.2.3 (if abnormal before therapy), as well as one or more of the
features listed in section 5.2.4. To define a PR, these parameters need to be documented for a minimal duration of 2 months (Table
4). Constitutional symptoms persisting for more than 1 month
should be recorded.
5.2.1. A decrease in the number of blood lymphocytes by 50%
or more from the value before therapy.
5.2.2. Reduction in lymphadenopathy (by CT scans in clinical
trials 57 or by palpation in general practice) as defined by the
following:
5.2.2.1. A decrease…

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Hallmarks of Cancer 7: Genome Instability and Mutation

Mutation-Rates2

Here is the 7th installment from Dr. Buddhini Samarasinghe‘s article series on the Hallmarks of Cancer. You can read the full article on Scientific American. Here’s a snippet. Please go check it out. She has a wonderful knack of making very complex bioscience topics understandable. Here’s a snippet, please check out the full post.

Mutations 101
Mutations enable cancer cells to embark on their frenzied growth within our bodies. But what are mutations, and how do they happen? In genetics, a mutation is a change in an organism’s DNA sequence. The nucleotide letters A, T, C and G that make up our DNA can be deleted or substituted, and single or double stranded breaks can occur in the DNA molecule. Complete sections of our DNA can also be deleted or swapped with other sections. These changes can occur spontaneously or from exposure to inducers such as harmful chemicals or radiation. Our metabolic activities cause mutations all the time; oxygen, the vital molecule that helps us live, also creates dangerous DNA-damaging free radicals when metabolized by our cells. A sunny day at the beach can introduce thousands of mutations into our DNA. In fact, mutations are inevitable; each time our cells divide, the imperfect DNA replication process introduces temporary errors into our DNA. It has been estimated that all these processes can result in thousands of individual molecular lesions per cell per day. Our genome surveillance system and DNA repair mechanisms must be doing a fantastic job: based on these mutation rates, cancer should occur from the moment we are conceived.

Please go back and check out her other posts. They’re worth your time.

A CT for Christmas

CT-machine

It’s now been almost four full 28 day treatment cycles with investigational PI3K inhibitor IPI-145 and it’s time for another CT scan (#4) tomorrow. This will be my third since August and they’ll be measuring my spleen, liver and many lymph nodes for shrinkage or reduction in lymphadenopathy as a result of the therapy. The key words I’ll be listening for from Dr Flinn afterwards will be Partial Remission or simply PR. 50% reduction across the board should be attainable from the numbers I’ve been watching and it would be an awesome Christmas gift!

Screenshot from 2013-11-20 14:18:59

The other side of drug development

dwtf_lgBringing a new drug to market is very expensive. There is a lot at stake and investors follow the process closely. For the record, Monday morning biotech stock market quarterbacks or financial analysts are driving my nuts. When I try to research drug development news and updates, there is probably 10 articles by these market analysts for every 1 clinical or scientific one. It’s like search engine SPAM. This one came to my inbox this morning and is almost depressing. ASH 2013 just wrapped up a week ago. There are no good , effective FDA approved treatments for my particular chromosomal mutation. For me, this drug IPI-145 seems to be working miracles in managing my disease but to the analysts, it’s too little too late in a market that seems to be getting crowded in recent months.

Why Investors Are Writing Off Infinity Pharma

Looking back to the beginning of 2013 it was thought that Infinity had the best in class PI3K inhibitor and the development lead held by Gilead could be overcome with better efficacy. ASCO threw a giant wrench in that thesis as many started to worry about the higher rates of serious infections (although this is another story as the rates were similar to idelalisib.)  Regardless of whether the rates were higher or not, the fact was IPI-145 was no longer seen as a clearly better drug. Thus the development lead of Gilead became a much larger hurdle.

ASH was the chance to present additional data that highlighted both the improved efficacy of IPI-145 and allay concerns over the rate of infections. Given the extremely negative sentiment, this seemed like a good contrarian bet (assuming good data). In many ways, IPI-145 held up its end of the bargain as the data were fine but the stock continues to sell. Why?

The issue was that many saw the data as good as, but not obviously better than, idelalisib. The consensus was that it was not nearly enough to overcome the development lead and commercial experience of Gilead. As such, sentiment went beyond negative.  How can sentiment move beyond extremely bearish? It moves into indifference and that was what I detected at ASH. People wrote off IPI-145.

Way to ruin a good thing. Fooey on you guys!

Morton’s debacle update

As expected, the local story of a cancer patient asked to leave Morton’s Steakhouse for wearing a knit wool cap that became viral over the weekend made it to many news outlets and has been amicably resolved. The full story is available on the Huffington Post.

UPDATE: Tim Whitlock, the Senior V.P. of Operations and the C.O.O. Morton’s The Steakhouse has sent this statement about the incident to The Huffington Post.

“Our executive team has been in contact with Mr. Chambers who fully accepted our apology. There was a complete and total misunderstanding by our staff who had no idea that our guest had a medical condition. Our actions were uninformed and our intentions were not malicious. As a sign of our sincere apology and commitment to the community, we are donating on behalf of Mr. Chambers, $2,000.00 to the St. Jude’s Hospital. In addition, Morton’s The Steakhouse will also partner with Mr. Chambers to underwrite a cancer fundraiser.”

My Chambers (The victim) admitted he has bigger fights to win than this. I fully agree. The staff and local management’s behavior was reprehensible and despite their gestures and apology, I don’t think I will grace their pompous hallowed halls anytime soon; I know where to get a fabulous steak and can wear a T shirt or a Windsor-knotted tie.  You don’ just kick someone when they’re down.

I hope they (Morton’s) like my hat.

1387228002106

Leper Treatment

hat

This issue caught my attention on social media last night and has practically gone viral since then. A high-end Nashville steakhouse called Mortons which apparently has a strict dress code for patrons delivered horrible and inhumane treatment to a cancer patient who chose to wear a knit cap on his hairless head to try to stay warm.

Right now, Fox17 WZTV is the only news outlet carrying the story but I expect that will change by newstime tonight.

According to numerous reviews on Yelp and posts on Facebook, a large party of about 16 people held a company Christmas party at Morton’s, The Steakhouse, in downtown Nashville, but there were no good tidings. After spending more than $2,000 at the Church Street location, one of the men dining with the group put on a wool beanie. Witnesses say he needs the added warmth because he is a cancer patient undergoing chemotherapy. The diners say their friend was asked to remove his hat, and explained the situation to the manager, who allegedly said that the gentleman should bring a doctor’s note or call ahead so that he could be seated in a private dining area. Witnesses say the cancer patient along with his wife and kids became very upset over how the situation was handled and they stormed out to leave. The police even arrived.

Since when did a restaurant’s dress code ever trump basic human dignity? I can’t envision a more terrible management and customer service experience. I am embarassed for our city and outraged, no perhaps indignant as a fellow cancer patient. Morton’s is permanently off my menu.

Blogger Blues

dry_dock

I’ve kept other blogs over the years and more often than not, you get to wondering why you are doing this. Comments become nearly nonexistent and stats show your readership is closely following the dried up stream of comments. I originally started doing this to keep an archive of my adventure in leukemia treatment and so as to not flood my social media friends with all the highs and lows of that adventure. It’s a slow phase of treatment right now. It seems to be working but there aren’t many emotional nailbiters happening and I’m just riding out the storm until something significant happens whether good or bad. I don’t like linking to others’ content nor ranting about quackery/false hopes. I’m thinking maybe this ship has run its course and it might be time to take it to drydock and just mothball it.

Thanks to all of you for following it all up to now.

I’m winning, Leukemia is losing!

Blood Counts

After 3 1/2 28 day cycles of treatment in this ipi-145 clinical trial, The trends from my CT scans and CBC tests are all pointing towards more normal blood counts and hopefully a partial remission. The WBC and Neutrophil counts show quite a bit of variability from week to week but they are trending in more normal directions. Can’t thank Dr Flinn and the team at Tennessee Oncology/Sarah Cannon Research enough.

Merry Christmas to Don!!!