Here we go

I’m on the tired side and definitely a bit uncomfortable so this post will be a bit short.  But this week will start a month of July that proves to be on the wild side so before things get too crazy I need to post a current status.

The MRI results from last Tuesday were as I expected and by flagging cancer in several places of my mid and lower spine they provided an explanation for the back pain I have had since Memorial Day weekend.  I was able to get an immediate appointment with a terrific radiation oncologist, Dr. Douglas A. Fein (click here for his bio).  During that visit I had a grid drawn on me with magic marker and 10 tats were applied that will guide my radiation treatments.  Treatment begins tomorrow and I will get them for 10 straight days.  Dr. Fein is confident that I’ll have good results from this.  I told him that I need to be able to ride my bike 20-miles on August 19^th and he told me that won’t be a problem.  I’m holding him to it.

Amy and I also meet with Dr. Richards on Tuesday afternoon to finalize the chemo plans and that includes figuring out the schedule.  I believe that the VP-16 is administered 3 days in a row.  Things are going to be fun for at least a couple of weeks while we have to juggle both radiation and chemo.

The fun part of this, as Dan Nies brought to my attention, is that I’ll either start to glow in the dark soon or I’ll be developing some kind of super powers.  I’ll keep you all posted on which it is.  I'm hoping for some kind of super power because that will be more fun then simply having a little extra glow.

Mintz’s Mentschen is currently in 4^th place with over $15,600 raised.  Thanks!!  We have plenty of time to make a run for the top 3 places.

Lots going on

Things definitely bogged down there for a bit while going through the liver biopsy itself, waiting for the pathology report, getting an appointment at MSKCC, waiting for further review of the biopsy slides by MSKCC, and then prescription of an MRI and octreotide scan.  Each of those scans were prescribed by both Dr. Janjigian (I’ll be using “Dr. J” from now on because it’s cool and quicker to type) and Dr. Richards so it’s good to know that everyone is on the same page.

MSKCC pathologists wound up agreeing with the original biopsy report (major woohoo since that means I won’t have to be harpooned for another liver biopsy!) and that enabled Dr. J and Dr. Richards to discuss the specific chemo protocol that we’ll be using.  Minimally the new protocol will be composed of VP-16 and a platinum-based drug.  Given that I’ve had cisplatin, oxaliplatin, and carboplatin I’m not sure which one we’ll use.

The MRI is tomorrow afternoon and is of my spine.  This will provide us with imaging that is a follow-up to things that were mentioned on the 5/16 PET/CT scan as well as to discomfort that I’ve had for the past several weeks.  The octreotide scan actually takes place in parts over 3 days (I’m sure that I’ll have some good stories from this one).  This scan will take place in late July and will not impact our ability to start chemo in early July.

I sent my big email blast for LiveSTRONG a couple of weeks back and as is always the case I was blown away by the numerous emails and donations that I received in response.  I really did get emotional about it all.  The support that is expressed by everyone not to mention the generous financial support for LAF is incredibly humbling.  My personal fundraising is over $4,500 and Mintz’s Mentschen is pushing for a top 5 team finish with $13,600 to-date.  The same plea still applies as we’re continuing to get new team members for walking/running/riding.  To either join our team or to donate you can utilize my personal fundraising page by clicking here.  Thanks!!

And the verdict is?

Today was our appointment at Memorial Sloan-Kettering and the verdict is?  

Unfortunately it was a hung jury.

While the pathology results from the liver biopsy were “good” with regard to bringing information that offers new and different treatment options they were also bad.  They were bad in the sense that they are so different pathologically from the biopsy that was taken from my esophagus in 2008.

Therefore, Dr. Janjigian at MSKCC wants to review the biopsy slides from 2008 and if the MSKCC pathologists are still in need of more information I could possibly have to go for yet another liver biopsy.  The kicker with this biopsy is that it won’t be done with a fine needle (as if that big honking needle was “fine”) this time it will be done with a CORE needle.  I am so excited at the prospect of this you can't imagine.

I also mentioned that I’ve been having some back pain in recent weeks and that has earned me an MRI of my spine.  No biggie on that one but it’s just another thing between me and getting back into treatment (chemo).  Depending on the results of the MRI I could actually wind up receiving radiation treatment for the first time.

All of this new stuff!  Ain’t it exciting!?!?

So stay tuned because the next week or so may bring some new twists and turns.

Before I go I have to thank everyone for their response to my LiveSTRONG fundraising and recruitment plea.  It looks like we’re picking up some new walkers for our Mintz’s Mentschen team and my personal fundraising total has reached $3,365.  Our team total of $10,365 has us in 6^th place out of all teams registered for the Philly LiveSTRONG event.  You can donate and/or join us via my fundraising page by clicking here.  Thanks!!

The results are in

Well the good part about the liver biopsy is that it turned my 3-day holiday weekend into a 4-day weekend.  Woo-hoo!!  I knew enough about the procedure to be nervous as it approached but I figured that I’m pretty good with handling pain so all would probably be OK.

The doctor that did the biopsy was great.  His name was Dr. Burgos.  As opposed to other interventional radiologists that I’ve had for port insertion/removal Dr. Burgos was very social and upbeat.  He told me what to expect and kept me well informed as he was doing things.  YES, I was wide awake and undraped.  i.e. I was able to see everything as he was doing it!  That was both good and bad because I was able to know what was coming but darn those needles were BIG!  About the only part that really hurt was right at the beginning when he inserted the needle through my rib cage and then into the liver.  The best part came at the end when he told me that I had “scored one for the team”.  I asked him what he meant and he told me that whenever he sees that his patient is a relatively young man he gets worried because men can’t take pain like a woman.  He told me that I did as well as a woman.  Now there’s a compliment for you.  LOL.  I’ll take it.

I got the biopsy results last evening when Dr. Richards called.  While I’m HER2 negative I never heard him so excited before.  The biopsy provided a lot of detail about the liver metastasis and Dr. Richards is excited because this information opens the door to a different set of drugs.  And with some that are very new.  With this turn of events he suggested that we go to MSKCC for a consultation and I’m working to make that happen as quickly as possible.  I called Saint Peter’s pathology to get the biopsy slides and I already have the CD from the last PET/CT.  Hopefully I get a date from MSKCC tomorrow.  The MSKCC doctor I had seen 3 times over these years has left the hospital and I’ve been assigned to a new doctor.  Here’s a link to her profile page at MSKCC.

Are we having fun yet?

Tuesday, May 29th had aligned itself to be my 50th chemo treatment and my 53rd birthday.  Well, it's still my birthday but now I have the pleasure of going to St. Peter's University Hospital in New Brunswick for a liver biopsy instead of having a chemo treatment.  Sounds like fun, huh!?

OK, now what?

After all of the waiting the PET/CT has come and gone and now we’re dealing with its aftermath since the results were not good.  For the first time since this saga began we’ve hit a chemo cocktail that didn’t bring positive results.

In February the scan showed metastases on my liver, as has been the case for 3 plus years, and we started a new set of chemo drugs that I had had before although not together.  And now after 3 months the largest metastasis is about twice the size.  So we’re scrambling to try and come up with a Plan B.  Since my staging is stage 4 the basic standard of care remains chemotherapy and it is the core of my treatment plan.  This doesn’t mean that we won’t be seeking other potential treatment but the initial challenge is to try and come up with chemo drugs that we haven’t tried yet.  Since I’m now in year 5 coming up with new drugs to try is nearly impossible because I’ve had just about all of the different drugs at least once.

One thing we haven’t tried yet is to see if I have the HER2 or EGFR receptors.  Only around 30% of people have these receptors but if it turns out that I’m one of those then it opens the door to using drugs such as herceptin that have had good results.  So this is going to be our step 1 and that means that I’ll be having a liver biopsy to test for those receptors.  The biopsy will probably be next Wednesday, May 30^th at St. Peter’s in New Brunswick.

I will also be looking to schedule an appointment with the Liver Metastases group of doctors at Sloan-Kettering.  I believe that this specific group didn’t exist until relatively recently and so I’m hoping to get some new perspective from them.

With all of that said the weather this past weekend was terrific.  And since I was scheduled to ride in an event that supported the Multiple Sclerosis Society and my friend Missy Gervasini I stubbornly held to that plan despite my not feeling that well physically.  The ride was a major physical challenge but I enjoyed riding the beginning miles with Missy and the remainder of the 20 miles with Bobby Wiener.  It was a fun day indeed.

On Sunday I had a ride scheduled with Grace, Stephanie, Dan, and Kathy so once again my “no rules” frame of mind won out and I was able to struggle through a 30-mile ride.  This was possible in large part to the magic massage skills of Kathy Lynch.

The numbers for both Mentschen team members and fundraising for LiveSTRONG are growing finally.  As always, if you can join us to walk, run, or ride that would be terrific.  Donations of any amount are deeply appreciated.  Click here to access myLiveSTRONG web page where you can either join us or donate.  THANKS!!

It's finally here

It seems like I've been waiting for this for an incredibly long time and finally it's here.
The PET/CT tomorrow is.....  well, huge.
Not much more that needs to be said.

I'll be back in touch here with the results as soon as I can.

Still plugging away

Before too much more time goes by, and before I have my treatment tomorrow, I’m just going to stick my head up and say hello with a quick blog post.

I think the cumulative aspect of chemo is starting to catch up with me because  it’s been taking even a few days into week 3 of each cycle before I start feeling “ok”.  I’ve been exhausted in a way that I haven’t felt before and that coupled with other side effects from the camptosar have made things interesting lately.  At my last treatment Dr. Richards mentioned that my white blood cell count was on the low side at 3.2.  And that’s after a full week of recovery!  How low had it been during the last treatment cycle?  I also told Dr. Richards that I was having some shortness of breath and that earned me a stop at the radiologist post-treatment for a chest x-ray.  It came back “normal”.

Despite the fatigue Dan Nies came by after my last recovery week and accompanied me on a slow (10-12 mph) 32-mile ride.  It wasn’t easy but these rides really help me to clear my head so I enjoyed it immensely.  My next planned ride will come on Saturday the 19^th at the end of my next recovery week.  That’s the Multiple Sclerosis ride that we’ve been doing in recent years for my friend Missy Gervasini.  Hopefully the weather will cooperate and Amy will have a nice easy 25-mile ride on the tandem.

As I mentioned, chemo treatment #8 for 2012 is tomorrow.  And then the big day comes the following week when I have my next PET/CT on Wednesday, 5/16.   The significance of this scan I think speaks for itself.

The gradual build up to our Mintz’s Mentschen LiveSTRONG weekend in Philly in August is continuing.  Our team is growing and hopefully our fundraising totals will start to make some significant leaps.  And, therefore, here’s my usual plea.  We’d love to have you join us to walk, run, or ride.  If you can’t swing that please consider a tax-deductible donation in support of the Lance Armstrong Foundation.  You can join or donate by clicking here.

Treatment #46 in the books

The 2012 version of my chemotherapy, specifically the schedule that I’m receiving the treatments, has been a real drag.  The biggest impact is that I’m not getting much time for a real “recovery” and this has impacted some things very tangibly.

One of those things is the frequency of posts that I make to this blog.  My guilt has had me mention this in recent posts but truthfully when my work day ends the first thing I want to do is to hit the POWER button on my laptop and to literally run for the couch.  I will try to do better since the last thing I can afford is to lose any more of the support and energy that I had been receiving from you all.

Another impact from the lack of recovery is that the solid bike riding I had been doing with rides in the 30-45 mile range seems like a distant memory right now.  Riding like that is just not physically possible right now.  The fabulous weather this past weekend got me out on my bike with Dan Nies on Saturday.  It’s important to note that I have NEVER ridden on a Saturday of a treatment week before.  Although the last few miles of the ride were an effort I thoroughly enjoyed the short but much needed 19-miler.  Thanks Dan.  We have the Multiple Sclerosis ride scheduled in mid-May and I’m confident that I’ll be able to cover the 25-mile distance in support of my friend Missy Gervasini while riding on her team, The Missy Express.

I’ll keep my usual closing mention and plea for LiveSTRONG recruitment and donations short.  The response has continued to be sluggish at best.  I’m not exaggerating when I say the weekend around LiveSTRONG is a real party atmosphere.  Consider walking or running with us on Saturday, August 18.  The cycling part of the event is on Sunday, August 19.  You can register for the event and join our team as well as make a donation by clicking here to access my LiveSTRONG web page.  Thanks for your support!

The beat goes on

I just got home from chemo treatment #4 of 2012 and before I hit the couch for an extended visit I wanted to try and get this belated status post done.

All remains status quo with treatment, etc. Side effects although challenging remain in the realm of manageable so I try not complain about them at all. I’m most bothered when nice weather presents a bike riding opportunity and when I can't pull it together for some chemo-related reason. I’m hoping that as the change in seasons really starts to kick in that I’ll be able to steal rides on occasion at the end of my work day.

Slowly but surely our Mintz’s Mentschen numbers have been increasing with regard to the number of team members and fundraising. But it’s really only been a trickle and not what we were hoping for considering our goal to try and kick things up a notch this year. I may even try to get small community interest pieces in the local newspapers as a way to help our recruitment but for those of you still reading here it would be outstanding if you could consider joining our team to walk/run (5K or 10K) or ride (multiple distances to choose from). We do train together for the biking events and will help to coach anyone that is new to cycling and/or new to group riding. Whatever type of event you choose I can guarantee that you’ll have a fantastic time and that it will be an experience to remember. The event is over the weekend of August 18-19 this year. If you aren’t able to join us please consider a tax-deductible donation. You can join us or donate by clicking here and clicking the applicable button on my webpage.

Status

For those of you that are still following along here on the blog I’m sorry that I wasn’t able to post a status update until now. The delay really has been that it was a tough week all around. It was definitely a bit strange to be back in the chair and connected to IV’s. The treatment itself was fine but the aftermath while not completely horrendous was more than enough to knock me down pretty hard.

I had hoped to be up and around by Sunday and ready for a bike ride but for various reasons that was not a good idea and Amy and I opted for a leisurely stroll on the canal towpath In Princeton. Treatment #2 was yesterday and although it may seem odd to those unfamiliar with chemo I’m generally “OK” the day after treatment. That’s why I’m making sure to get this blog update done NOW because things typically take a downhill slide from here. I’m stubborn so once again I’m hoping that I’ll be able to get out this Sunday for a bike ride.

That’s about it from here. The chemo process and juggling EVERYTHING around that schedule has begun.

As a parting note I do have to make a plea for our 2012 LiveSTRONG campaign. You can read my comments in recent posts where we’re looking to recruit new team members to walk, run, or ride with our Mentschen team this year. And, of course, if logistics or schedule won’t work for you it would be terrific if you could consider a donation. Links for all of that are in my prior posts as well as via my LiveSTRONG link in the LINKS section on the right side of this blog. Response so far has been disappointingly slow. Please help to pump up the Mentschen… and ME by joining/donating. THANKS!

Eve before

I don’t really have much to say right now but since tonight is not just any old eve before treatment moment I feel like I should at least make a post to mark the date.

Yes, as happens whenever we start a new chemo protocol I’m a bit anxious about tomorrow. Mostly it’s just fear of the unknown and that I want to quickly establish the routine I’ll need for this specific chemo protocol. Will nausea be an issue? Will taxotere affect me as it did in 2008 when I had mouth sores, lack of appetite, and significant weight loss? Will my immune system be impacted to where we’ll need to use neulasta as we have in the past? What is this 2-weeks ON, 1-week OFF schedule going to be like?

I’m not scared… just anxious. I feel very well cared for by Dr. Richards and the nursing staff. I look forward to giving Debbie, Marie, and Sharon big hugs and to get this show on the road. Dr. Richards will have to settle for a hearty handshake. Ha!!

Of course one of my biggest hopes as we get underway with Chemo Party 2012 is that I’ll be able to continue bike riding during treatment with meaningful frequency. Following the results of the PET/CT I have had strong rides of 42 and 40 miles that help me just as much mentally as they do physically. We’ll see how things go.

I’m thrilled to say that today we had two people register for our Mintz’s Mentschen LiveSTRONG team in Philadelphia. Most importantly these are two people that have not ridden with us before. This is exactly what we need as we strive for our goal of $40,000 this year. Hopefully this is a positive sign for many more that will be able to join us. Keep those cards and letters coming! And.... if you aren't able to ride/walk/run with us if you're able to consider a donation it would be greatly appreciated (yes, I haven't really been clear that there is also an opportunity to run or walk as part of the Mentschen LiveSTRONG team).

Deja vu all over again... all over again

Yes, I know that I’ve probably frustrated a bunch of people by not posting more quickly but really the past few weeks have been action packed.

First, let’s wrap up the Cycle for Survival topic. Last year the event raised a record $4.7 million and with the $6.1 million check presentation at our event early this month clearly this year had broken all CFS records. Imagine our surprise this week when we received emails broadcasting that total fundraising had surpassed $8 million! Absolutely amazing. Thanks again to everyone that donated so generously.

With 2011 as yet another year where my vacation days were used for chemo treatments I was very excited for Karsyn and Matthew’s wedding to enjoy a very happy occasion as well as a couple of days with extended family on Marco Island. It was everything I hoped for and more. It was a very unique gathering that included Erin, Bailey, and Sasha as well as Amy’s sisters and all of the Durkin family. Below is a picture of the Mintz clan from the wedding weekend taken at Amy’s sister Robin’s house.

Bailey, Erin, and me in the back. Amy and Sasha in front.

And at 7:45am on the morning after we returned from Florida I had my quarterly PET/CT. It was Valentine’s Day and since my recurrences have been like clockwork in February each year I had a sneaking suspicion for what might happen. And unfortunately I was right.

The metastases on my liver showed enough activity to where we need to start with chemotherapy again. My first treatment will be this coming Tuesday, 2/28. Amy and I met with Dr. Richards and we wound up choosing one of the chemo options that had been suggested by Memorial Sloan-Kettering when we went there at this time last year. The drugs we chose are two that I’ve had before but never together, docetaxel and irinotecan (aka taxotere and camptosar). Docetaxel is one of the drugs I had back when this all started in 2008 and it contributed to what was a challenging and “interesting” chemo experience. While I’m confident docetaxel will do its job I’m also hoping that it doesn’t kick my butt too badly. Especially since this will all be administered as two weeks on and one week off. i.e. I’ll be getting a treatment two weeks in a row before a one week break.

That about sums it up except that, of course, this recent development definitely kicks up the emotion that I have for our Mintz’s Mentschen participation in the 2012 Philly LiveSTRONG event. As usual it is in August but this year we’ve already set some big goals for our team. As you all know, we have collectively raised over $140,000 through these past 4 years of riding in Philly. Last year alone we had 23 people raise over $34,300. This year we want to reach $40,000 and to do that we’re making a plea for new Mentschen team members. Event routes range from 10 miles all the way to a full 100. I can’t predict what route I’ll be able to ride come August but I have ridden the 10-miler while in treatment before and I know that minimally I’ll be able to do that again. Please join us!! Experience level is NOT a factor. This event is a ride and not a race and we'll be preparing by riding/training together in advance. Believe me, while having an absolute blast of a time it is not uncommon for people to come away saying that it was a life-changing experience for them. And the minimum fundraising requirement is not at all difficult at only $250. Email (jhm100@gmail.com) or call me (917-533-9097) with any questions. Click here to register and join us. I'd be thrilled to have you join us.

If you aren’t in a position to ride with us please consider supporting us with a donation of any size. Heartfelt thanks in advance for your generosity! Click here to donate on my fundraising webpage.

Cycle for Survival success

The Cycle for Survival event was yesterday and it was a record-setting success. Thanks to the generosity of all that were able to donate the event raised over $6.1 million in support of clinical trials at Memorial Sloan-Kettering. Our Mintz’s Mentschen group had a great time and look forward to riding in Cycle for Survival again in 2013. I was lucky enough to have been invited to ride on the Team Fearless bike in honor of the event founder, Jen Goodman Linn (www.youfearless.com), who lost her cancer battle this past summer. Following are a few pictures.

Our Mintz's Mentschen team

Me on the Team Fearless bike

The check presented to MSKCC

As one event passes our focus turns to plans for participation in LiveSTRONG challenge and other events. We’re definitely participating as a team in the Philadelphia LiveSTRONG event in August and several of us may even go out to Davis, CA for the event there in June. Note that we are looking to up the ante this year with Mintz’s Mentschen by setting a goal of raising $40,000. Our plan for reaching that goal is to recruit more people for our team. If you’re interested in helping to raise funds to kick cancer in the face while making new friends and getting some exercise please JOIN US! Email me with any questions you may have but really there’s no “risk” on your part. Ride distances range from 10-100 miles and the financial commitment is that you raise a minimum of only $250. We will be riding together on weekends to prepare for these events and will train you physically and with all that you need to know so that you are ready on event day. PLEASE join us now so you can maximize your training and fundraising lead time before the event. If you are ready to JOIN just click here and then on the “Mintz’s Mentschen” link to register.

The next week will be a bit of a whirlwind since I’ll be traveling for work, then to Florida for a wedding the day after I return home, followed by my PET/CT the day after I return from Florida. As always, I will share the results of the scan here as soon as possible.