We WON

ME HOISTING THE FLAG AT GAME 6 OF THE STANLEY CUP FINALS

The ibrutinib is working. I am working on a post detailing shrunken nodes and healthy blood counts and improved energy.

Honest I am but I have my priorities straight. 

That good news pales in comparison to the sheer joy of being at the game where the Kings and their patient fans finally got to hoist Lord Stanley's Cup. Been a loyal fan for 22 or their 45 year wait.

I buy season tickets so I can go the playoffs. My cancer trial made me miss going to all but two games in their amazing record breaking Stanley Cup run. 

But those two games were thunderingly joyful.

 Game 3 in LA -where they won 4-0 and tonight at home where they won it all.

They could have clinched in game 4 when I was in Ohio or game 5 when they were in Jersey and I was in Orlando.

But as it turned out,  they waited until I was back in SoCal to claim the big prize. And in such amazing style. 6-1. Three goals scored on the major penalty in the first period.

I am so happy. People were crying at Staples Center.

Sometimes delays are good.

Sometimes we get a lucky bounce.

Sometimes things just workout.

I am feeling like such a lucky man tonight. I am getting my health back, I have love in my life, and the Kings won the Stanley Cup.

I CAN'T STOP SMILING!

Celebrating with a organic vegan muffin and raw vegan coconut milk "ice cream".

GO KINGS GO!

Heartburn: Ibrutinib (PCI-32765)

Well I guess I am getting a taste of the full spectrum of GI issues associated with ibrutinib.

While the lower intestinal issues have calmed down, and the nausea is gone, I am having some nasty heartburn for the first time since I can't remember when. Vegans usually don't get heartburn.

I am confident that this well recognized side effect of the drug will also pass, as have the other issues.

It is hard to report on my palpable nodes day to day is kinda like watching the grass grow. You don't notice much difference from one morning to the next, but after a week there has been a real perceptible changes. My nodes are slowly melting away.

Generally I am feeling well otherwise. More details in future posts.

Canoed six miles down the Darby Creek just south of Columbus today. It was wonderful.

Has a great meal with new friends. Vegan flour-less chocolate cake may be the source of my gastric issues. That was wonderful.

Watched the LA Kings win game three against Phoenix. That too was wonderful.

Only the heartburn is not so wonderful.

Alemtuzumab in Combination With Methylprednisolone for 17p deleted patients

J Clin Oncol. 2012 May 10;30(14):1647-55. Epub 2012 Apr 9.

Alemtuzumab in Combination With Methylprednisolone Is a Highly Effective Induction Regimen for Patients With Chronic Lymphocytic Leukemia and Deletion of TP53: Final Results of the National Cancer Research Institute CLL206 Trial.

Pettitt AR, Jackson R, Carruthers S, Dodd J, Dodd S, Oates M, Johnson GG, Schuh A, Matutes E, Dearden CE, Catovsky D, Radford JA, Bloor A, Follows GA,Devereux S, Kruger A, Blundell J, Agrawal S, Allsup D, Proctor S, Heartin E, Oscier D, Hamblin TJ, Rawstron A, Hillmen P.

This article (link here) is notable for three things.

First, it offers a very impressive response rate in the most difficult to treat patients. 85% overall with 36% CR (complete remission).  7 of10 patients with lymph nodes > 5 cm responded and two had CRs. Wow!

Second, it has a very high risk of serious infections. I quote:

"Grade 3 to 4 infection occurred in 51% of the overall cohort and in 29% of patients less than 60 years of age. Treatment-related mortality was 5%"

Still it is an options for those with 17p del who have so few options and a trial with tyrosine kinase inhibitor is not in the cards. It makes most sense in younger patients, younger being less than 60. It could be a bridge to transplant as median progression free survival was about a year, time enough to get the transplant team rolling and get the Campath out of your system.

Overall, however, it is a risky path as both HDMP(Methylprednisolone) and alemtuzumab (Campath) are very immunosuppressive. It is not just the risk of catching some bug. It is the risk of waking up something you already caught and that has been dormant for years such as zoster or CMV. The steroids have other significant side effects too and surprising  two out of three patients had grade 3 or 4 hematologic toxicities.

I might opt for HDMP+O myself if I wasn't in this ibrutinib + O trial here at OSU, but the data on HDMP + A is very persuasive and would need to be carefully considered.

Third and final point, one of the authors is the late great and much beloved Terry Hamblin. While admittedly, some of this is old data presented in 2009, it is updated for this 2012 publication months after his passing. 

Truly Dr. Hamblin lives on in the work he has done and so much more.

What a blessing his life was for those of us who knew him.

On personal note, I am continuing to do well in Columbus with my three grey pills of ibrutinib every morning. Looking forward to a few weeks of no infusions. I have less gut issues, more muscle pains, and smaller nodes. Life is good.

If the weather is good tomorrow I am going canoeing in Darby Creek. Dinner with new friends. Tonight went for a sunset walk in Prairie Oaks, a beautiful Metro Park. The Kings (HOW BOUT THOSE KINGS?) are on TV here.

I really like Columbus.

I am also really glad I will be home to stay in a few weeks. 

I have Stanley Cup playoff tickets that are finally useful and I have to sell them all. It probably will all be over just a few days before I get home. Maybe I can still catch the victory parade.

GO KINGS GO

PS. I love this kind of post: Raw science, good news, dear friends, nature, and hockey in one sweep!

Good news in the blood, bad news on the ice

My labs remain excellent.

CBC shows a mild macrocytic anemia that is very stable and my platelets were over 400,000 on my reduced dose of ciclosporin. WBC is normal and ALC is still a touch low, which I figure is still the residual effect of rituximab from 6 months ago.

My blood chemistries including the measures of kidney function and the test for the risk of gout (all known nasty side effect of ciclosporin), are all nice and low. Even my blood pressure is good.

So the plan is reduce the ciclosporin once again, then try to stretch out the IVIg. I see Dr. Kipps in a few days to go over the bone marrow biopsy and map out my plan.

The new MR machine to image my gut nodes won't be online in the hospital until the end of May, so I am waiting for that critical piece of data.

But is all good news.

Not so for my home team.

On the ice it is a different story. The LA Kings have been scored on 6 times in each of the last two games, and even allowed a historic collapse blowing a 4 goal lead in game 3. And this happening to a team build around a strong defense. It has been painful to watch the games at Staples Center. It is tough to be a Kings fan, especially in Orange County, home of the Ducks who have won a Cup.

Down 3-1 in a 4 game Stanley Cup playoff series, it is do or die tonight.

I will be at the fun Redondo Beach Cafe where hockey and Montreal style food is king to watch the game on TV from San Jose with my son Ben and some friends.

I am still routing for a rematch of the 93 finals between my two favorite teams, Montreal and LA, this time with a different outcome.

Go Kings Go! Go Kings Go! Go Kings Go!

The price of Love, eh

This is how much I love my son-in-law. I'm trying to sell my great ticket to the 6th game of the Stanley Cup playoffs tomorrow so I can stay longer to play with my daughter and husband in Emeryville, post thesis defense.

So here is my crass commercial pitch, but it is for good cause- Hockey

Wanna a great seat to the game? Go to http://www.ticketmaster.com/ticketexchange/ Navigate to the LA Kings for the game tomorrow. My single ticket is Section 332, 2W, 10 Front row where the Kings shoot twice. It is one of the best seats in the cheap section and it is price below market to sell.

I am now certain my Canadian citizenship is in jeopardy. Despite the fame of Frank Gehry and Author Erickson and Moshe Safdie and Bing Thom, to favor architecture over hockey, I must be labeled a traitor.