Help Alex Kick Cancer's Ass!!!

$14,006 of $15,000 goal

Raised by 145 people in 37 months
We need your help to help Alex defy the odds and get the best treatment so he can stay with us to enjoy his 30s, 40s, 50s....

Please consider helping Alex through the biggest fight of his life.

With the help of your donation, no matter how big or small, you can help Alex to beat this, and not have to worry about the financial stress on him and his family.





ARE YOU IN?

Every single dollar counts. All funds raised will go DIRECTLY to Alex's surgery and treatment.

You can donate via this site or if you prefer to avoid the small fee you can donate directly by emailing me for more info: rocktheax@gmail.com for more details.

No words will ever thank you enough for your support and generosity - just know that you have made a difference.

Thank you for reading.



- Matt
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Alex started T-cell treatment today! I also got my flight out to Charlottesville and I'm excited to spend Christmas and Xmas with him :) More info to come, but hopefully... it was very scary in that he almost wasn't healthy enough to start the trial but he barely hit those minimums so... he's still in the race!!! More info to come thank you so so much to new donations and hope to have good news for you in the coming weeks :)
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(The below is from Alex. It's pretty long and technical, but the good news is that he's still alive and fighting, and now in Charlottesville to try a new trial. If the trial goes well, there's a chance we may have him for a while longer (or, even better, a lot longer), but if it fails, we'll need to prepare for hospice care, so it's all or nothing now. Any help you can provide would be very appreciated - Matt) --

Hello, it has been a while so there will be a lot to go over!

I had my second surgery to reverse the ileostomy and remove a few tumors in lymph nodes by my lungs and around the abdomen through the ileostomy site.

Shortly after, I had a liver procedure called a bland embolisation that blocks of the blood flow to the liver. Think of it as a heart attack for the lungs using small beads that block of the venous blood supply going to the tumors. This is done on the right and left side of the liver to manage side effects. This was successful enough to cause a lot of tumor death, a fairly painful process.

Around the same time as this I started back up on the first type of chemo using irinotecan and temozolomide without the bevizizumamb. Two rounds of this made it clear that we weren’t getting the effect we needed and abandoned that group of chemos.

Up next on the treatment plan was whole abdominal radiation (WAR) using a complex beam pattern to blast me with gamma radiation from the pelvis up to the top of the liver. Over 20 treatments were had over weekdays for a month. During that time nausea was as bad as it could be and few days went without vomiting. When i wasn’t feeling sick i was sleeping through much of the month. It had the desired effect however and caused significant shrinking of the tumors and almost complete reduction in ct/pet activity on the scans.

The WAR treatment is very challenging to the body so a 3 month period of recovery followed. I felt great and had some of the highest activity during this time. It wasn’t until i tried getting into a clinical trial that i found out the tumors were active and spreading again. By November of 2016 I had most of the old sites of disease and new spots forming around the lmyph nodes by the heart and inside both lungs.

Dec 8: With the liver being the greatest risk we did another round of embolizations this time using beads of oil suspended chemo to get at the tumors. With one procedure almost 80% of the tumor's blood supply could be targeted. The resulting tumor death was significant and long lasting but didn’t get anywhere near all of the disease.

In order to treat the whole body I started back on a chemo and antibody combo of Doxorubicin and Olaratumab for 5 cycles until i reached the max lifetime dose of 8 (3 were used up from VAC). This new antibody was supposed to broadly target the growth factors that would alert my immune system to destroy and using the chemo to help kickstart the job. This ended up producing a stabilization of the cancer with no new spots and some small reduction in tumor size. The activity (and size of one site) had increased giving us mixed results.

After I reached the max dose of doxorubicin I used the antibody on its own for two more cycle. During that month and a half the tumors grew massively and activity shot through the roof. The treatment was clearly not working when i could feel the size of my liver change by the week.

In order to bring this now out of control growth down to manageable disease I switched to a proven trio of chemotherapy drugs. This is the first week of the new chemo and too early to tell how the symptoms will manifest or how effective the chemo will be. Anxiety is high as can feel my bloated abdomen pushing from under my ribcage. I can feel my liver pushing against my lungs heart and digestive tract. It does not feel normal.

As of late the chemo I have been on is at half dose because my bone marrow isn’t resilient enough to take the full dose. Because of this the tumor growth has only been slowed down rather than reversed as hoped.

I have pain from the mass of these tumors inside me pushing everything else aside. Something i haven’t experienced since before treatment began. Most of this is the size of the liver, where tumors are closest to the skin. Sleeping consistently has been difficult because of that (no more sleeping on my side).

I’m excited to be able to participate in a new clinical trial in Charlottesville VA using activated T-cell immunotherapy! Similar but slightly less aggressive than the CAR-T cell therapies. They will target an expression found in my tumors via genetic testing. This should give me a better chance at long term survival even if the odds are far from perfect.

(Alex is now in Charlottesville, his family flew out there with him to help him start this trial, which begins Thursday. Any help you can offer to help his family with the travel costs would be extremely helpful and appreciated - Matt.)

- Alex
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So it’s been 5 months since my last update. Once again, thank-you to everyone who has donated to my cause! It has helped with all the travel to and from the hospital, between New York and San Francisco and all the medical bills. The first cycle with 2 rounds of chemo which were the experimental drugs went really well. I felt better, my tumors shrank 25 – 30%, I regained energy and did not feel sick or nauseous.

The 2nd cycle, 3 more rounds of chemo, each round being 3 weeks or so – not so much. I ended up getting fevers each time my immune system crashed and ended up in the hospital each time. My hair started falling out – which you already know if you’ve seen my facebook pictures. I got shingles, and then another virus which lasted many weeks. I did not feel so great. The good news is, in spite of all that, my tumors shrank some more, 20 – 25 %, which was great because many were very large at the start of my treatment.

The next step was to get the first surgery, which I was rather anxious about. That was on November 30, 2015. The surgeon removes all of the tumors he possibly can remove. In my case, he wasn’t able to operate on my liver because there were too many tumors. He was able to get the tumors out of my abdominal cavity though, and that is good. Recovery was a bit rough. My wounds drained for over a month and I ended up with a colostomy bag, which I was hoping to avoid. That is supposed to be reversed in the 2nd surgery.

For the last cycle of chemo for this trial, another 3 rounds lasting about 3 weeks each, I was able to go back home to California! I have been getting treatment at UCSF and while I have to be inpatient for the chemo, I have avoided going back into the hospital when my immune system crashed. It is so nice being in San Francisco with my friends and the good weather! I take awhile to recover from the low immune system but I have gone on several nice bike rides, I visited my friend’s place in Carmel and had a great time! I had so much fun that we are planning to go back there this weekend! Then I start the 3rd round of chemo for this cycle on Monday at UCSF.

End of March or beginning of April will be my second surgery. I hope to have the colostomy reversed, the surgeon will check my whole abdomen to make sure no tumors were left or are growing again and they are coming up with a plan for how to treat the tumors in the liver. That ends the trial but I will continue treatment after that. All of which remains to be seen.

Thank-you so much for all your support and love!

-Alex
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Hey everyone!

Cancer update: Round 2

I'm still not great at getting updates out there so I figured now is a good time. So far I am in the middle of the second round of chemo (each round being 3 weeks, 8 rounds in all). These two rounds have been the newer and experimental drugs for this type of cancer and have had really minimal side effects. No hair loss, no severe nausea, and only some GI induced calamities.
wink emoticon

The effect has been surprisingly pronounced; when I left CA I would be in intense pain for hours, now I barely need pain meds at all. You can see a visible difference in the size and shape of my abdomen. Energy levels have gone up dramatically in the past two weeks from being completely lethargic to almost normal. I got out for a 2.5hr bike ride on my week off in MD which was almost as easy as before the cancer!

Next round of chemo begins in a couple of weeks, and those will be a new set of drugs with the more severe and classical side effects like hair loss and nausea. Everyone is different so I'm hoping for the best!

By that point they will have redone the CT/PET scans to measure progress in shrinking the tumors. I'm excited to see how that goes.

Thank you for all your support and love!

- Alex
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$14,006 of $15,000 goal

Raised by 145 people in 37 months
Created July 21, 2015
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$100
Anonymous
6 months ago
$350
Anonymous
8 months ago
$100
Patti Bahr
8 months ago

We are praying that the trial is going well. Hope to see you in California next month.

$5
Anonymous
8 months ago
$20
Anonymous
8 months ago
SF
$500
Sam Feinberg
8 months ago

Keep fighting Alex

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