Three Years Down

Three YearsHow time flies. I haven’t posted in a while. Today (August 19th) marks my three-year “cancerversary.” Hard to believe that is has  been three years since I received the “official” diagnosis that I had cancer.

Today also marks the date that I am officially living on borrowed time.

As an update, I am still in “remission” having undetectable levels of the naughty cancer gene. I struggle day-to-day with the side effects of taking the Sprycel, but I’m still going.

Thank you for your support, love, and care.

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Yes, it’s a setback

RestartHello and Happy 2013. It’s been a while since I last posted. This is mainly because I haven’t had anything to post. Well…

The news from most recent PCR is that I have lost my molecular response. The b3a2 fusion gene transcript found in chronic myelogenous leukemia was detected. What does this mean? It means that the CML gene is replicating again. Put in English, I am technically no longer in remission.

Before you start freaking out, the level of this transcript present at diagnosis was 52%. The amount detected on this current blood draw is seven tenths of one percent (0.7%).

The bigger question is, why? I have been taking Sprycel for over a year now. I’ve been in a major molecular response for over a year. My doctor has drawn additional blood to check for gene mutations, but for now I think the reason for the change is a Drug-Drug interaction. Possibly, a 10 cent ant-acid pill brought down a $275 cancer drug. I have some acid reflux and take Tums for it. I believe I have been taking this too close to my Sprycel dose.

diet-coke-287x300I have Tums at work, at home and in the car. I take around 20 tablets a day. I’ve used this opportunity to ask myself why I am taking so much Tums?!?! Well, I’ve taken the advice of two of my doctors and have cut out the diet soda. And, so far (it’s been a week) I can say the reflux seems to be much better. Diet Dr. Pepper, I miss will (yes, the photo is of Diet Coke, I couldn’t find one of Dr. Pepper).

I will continue to take the Sprycel for now. In about three weeks we will recheck the PCR to see if the numbers are headed back down.

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Remission

Tomorrow will be my two-year anniversary since being diagnosed with Chronic Myloid Leukemia (CML).

It Seemed Like A Good Idea at the Time
Storefront Window of a Closed Business in Brooklyn, NY

It has been quite a while since I last posted. Time flies when you’re having fun. Hmm.

The long story short is that I am in remission. My last two PCR tests resulted in undetectable levels of the BCR-Abl gene. So, I take my pill and go about living. There are side effects, such as continuing energy issues and head aches. It’s a small price to pay. I am just happy to have a “normal” life. The life expectancy for people with CML is about 4-5 years. That was the case until the introduction of Gleevec. Now, the life expectancy is, if the CML is caught early, around that of the general population. So, I’ll be around for many years to come.

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A Public Service Message from Everyone that has Cancer

Okay, so perhaps “Everyone that has Cancer” is too broad a group. I probably can’t speak for the 1,638,910 million people newly diagnosed with all forms of cancer this year and the 11.7+ million living with cancer (or more appropriately who have cancer living with them).

So here it is…

If you friend (family member, co-worker, etc.) is diagnosed with cancer don’t treat them differently. Don’t treat them like glass. Don’t pull away. Many people have trouble deciding on what to say. Our society is conditioned to be fairly afraid of the “c” word. They don’t want to say the wrong thing. The fear is paralyzing. So, they end up not saying anything.

What is the right thing to say?

Pretty much anything.” Keep in mind the person with cancer is new to this too. Some people may respond to humor (like myself). Other people just want to know that friends are still there. Many people say, “I am thinking of you,” “You’re in my prayers,” “Let me know if there is anything I can do.” Even these cliché messages are better than saying nothing. So, if you say nothing else, say “I’m thinking of you. Let me know if there’s anything I can do.” And follow-up.

Alternatively you could send a “cancer” card from Hallmark.

Thank you for listening. And remember – say something. Don’t pull away. That is the most hurtful of all.

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It’s Alive!!!!

It's Alive!!!

I don’t know so much time has passed. I went from one project (local) to another project (New York City). Overall I have been working A LOT of hours. And my blog has suffered. The good news is I am still alive. And more than just being “alive” is that I am officially experiencing a “major response” (aka: the CML version of remission). I’ve achieved a 3 LOG reduction on my most recent PCR test. The new medication – Sprycel – is doing a great job. Long term prospects are looking good.

So, as I alluded to above, I am working in New York City working on a very interesting banking project. I am on a 4-month assignment here. I travel home on the weekends. It is actually pretty amazing, medically that is. A year ago working this type of schedule would have been impossible for me – heck, back then I was just focusing on getting out of bed and driving to work. How things change.

There have been challenges. Mainly it has been very hard on my wife – who is basically a single parent during the week – and my kids who miss me and ask where I am. In November, the week before Thanksgiving, our home was broken into. We lost several items, including computers and jewelry. Most dastardly the thieves made off with the Christmas presents we had purchased for our boys. Many people have been very kind and have helped us. Mankind can be especially wonderful at times. I am also a BIG fan of Target because of the way they handled a customer service call related to the theft of a package from the break-in.

Overall, I have much to be Thankful for. Health, Family, Spirituality and Employment. Pretty damn good.

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Nine weeks later and starting over

In the distance

It took just 9 weeks for the CML to start reproducing while I was on the medication “holiday.” If I was close to remission, it is now back in the distant horizon. It took just a few weeks time to erase several months of gains. I feel as if I am starting over. I’m not all the way back to the beginning – maybe 10 steps forward and 3 steps back. Still, it’s a good reminder of the reason why I (and others with CML) must take the medication daily … probably for the rest of our lives. It’s the only thing, short of a bone marrow transplant that will keep the CML under control.

I received the Sprycel today. My cost: $13.33. Insurance: $8,000. Quite a bargain. Today I am especially grateful for insurance. So, I start the medication tomorrow (Saturday, May 28th). Here’s to new beginnings. Cheers!

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One step forward, two steps back

There is no cure for CML. The only way to keep CML in “remission” is to take the medication – each and every day. I’ve learned this lesson first hand. I stopped Gleevec almost 9 weeks ago (a medication holiday). At the time of stopping I was in hematologic response, a complete cytogentic response, and a minor molecular response. This basically means that everything was going in the right direction.

The medication holiday has been good in that it has allowed my liver to recover. My liver enzymes are still high, but they have returned to within a tolerable range. I’m sure in the next few weeks the enzymes will totally normalize. That is the good news.

The bad news is the “holiday” has had the unintended consequence of allowing the cancer to restart the replication process. I lost the cytongentic response. The cytogentic test (called a FISH test) looks for the PH+ chromosome. The test examines 200 cells for the abnormality. Prior to the holiday, all 200 cells were clear of the leukemia. As of last week, 5 of the 200 cells tested positive. It could be worse, at diagnosis all 200 cells tested positive.

The molecular response has also changed. The PCR test looks at a large number of cells (100,000) for the BCR-Abl gene (the naughty product of the PH+ chromosome). At the start of the “holiday,” the amount of BCR-Abl genes positive was 0.834%. This has increased to 9.794% (again could be worse, at diagnosis it was in excess of 53%).

So, all of this means it is NOW time to restart medication therapy and quit this holiday! I should get the new medication – called Sprycel sometime next week. Tick tock.

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