Kevin here…

We recently posted a link to Facebook etitled: For Patient #1’s wife, melanoma is a thief (don’t let the Phillies fan art in the picture turn you away, no one’s perfect!).  If you haven’t read it:  it is a hard but very accurate account how metastatic melanoma affects a family (esp. the caregiver).  Little did we know that post would foreshadow me becoming Patient #1 on a different clinical trial.  Here’s the super small nutshell on how we got here:

1. Surgery / skin graft to take out the original mole (wide-local excision)
2. Test to check if melanoma has spread to surrounding lymph nodes, turns up positive
3. 2nd Surgery to take out those lymph nodes (parotidectomy / neck disection) 3rd Emergency Surgery to fix subdural hematoma cause by vomiting severely after surgery
4. 33 rounds of high-dose radiation to head and neck.
5. Red-tape causes disqualification of randomized Interferon / Ipilimumab trial so Interferon Alpha is chosen as standard of care for adjuvant stage.
6. High-Dose Interferon Alpha (adjuvant) brings major nausea and vomiting
7. Recurrence detected in the original location directly within the field of radiation!
8. 2 cycles of Interleukin-2 at 10 and 8 doses respectively but cancer  progresses.
9. Fly to NIH (Bethesda, MD) to consult with the NIH regarding TIL therapy with IL-12,
10. Then fly to LA to consult with UCLA for Anti PD-1 Trial.
11. Sign up for the Anti-PD1 trial at UCLA
12. Fly back and forth from ATL to UCLA every 3 weeks to take Anti-PD1, which completed with zero side effects but, cancer still progresses
13. Attempt to get on a BRAF/MEK clinical trial starting at UCLA and transferring to Vanderbilt – fails over communication issues.
14. Fly back to NIH to have surgery to harvest cells for TIL therapy with IL-12 – successful.
15. Get very sick while liver enzymes go wildly out of control – but calms down on its own and no one knows why
16. Get kicked off of TIL therapy with IL-12 trial for being “too sick” to complete it.
17. Start BRAF inhibitor (Vemurafenib) at Emory which is VERY effective and shrinks all of my tumors dramatically
18. Stop BRAF inhibitor (Vemurafenib) in order to prepare for TIL therapy with IL-12 at the NIH  (now that my liver has calmed down)
19. After some delays at NIH and no medication for weeks, tumors start coming back, but well enough to be re-instated on TIL therapy with IL-12 trial
20. TIL cells cause unexpected HUGE immune response which almost kills me, but they reverse it to save my life.
21. TIL Therapy with IL-12 determined to be not-effective  (likely because they had to reverse it) and cancer progresses further.
22. Go back on BRAF inhibitor (Vemurafenib) at Emory and add a MEK inhibitor to it then switch to another BRAF inhibitor (Dabrafenib) at UCLA
23. Symptoms and tumors start getting better for a  few weeks, then tumors come roaring back.

So when you’ve already done all of this, a Phase I trial doesn’t seem too scary anymore… right?  We’ve exhausted almost all of the treatments we know about, including the cutting edge ones.  My cancer has officially “developed resistance” to all the drugs out there for melanoma. Liver area tumors are most likely back and causing nausea / vomiting 2-5 times per day almost every day now.

So after passing some emails back and forth with our UCLA Oncologist we learned of something new, just barely on the horizon, and we do mean BARELY.  It’s called an AKT inhibitor.  As you can see if you follow the link, the trial is not even open yet, unless you know Dr. Ribas at UCLA of course.  😉  The idea is that when BRAF mutant melanomas develop resistance they activate another signaling pathway (which allows the melanoma cells to replicate) called AKT.

While AKT inhibitors have been given to humans to treat other cancers, the combination with a BRAF inhibitor has never been tried.  So I will be Patient #1 for this combination.  Our doctors are hopeful because they have already seen success in human cell lines (these are tissue samples derived from biopsies just like mine).   When they inject the AKT inhibitor and BRAF inhibitor into these cells in the lab, the melanoma cells start dying off very quickly.  Our doctor used the word “hopeful” in describing this treatment option.  So this is good news!

The next steps of the plan include flying home, getting some radio surgery for the brain tumor, picking up the kids, dealing with the tree that fell on our house, and flying back to LA to get started on the new trial.  We hope to start on Tuesday October 22, and our plan is to stay in LA for about two months due to the high number of initial visits and because, you know, we have no idea what exactly is going to happen.

‘Evenin’ y’all. Sarah here.  I’m not sure where to start but here is a jumbled update.

Rachel and Kevin, our brother Joshua and his wife Jen (who flew all the way from Oregon), my husband and I, and all our kiddos took a lovely trip over the weekend to a cabin in the North Georgia mountains to enjoy some family time and make some memories.  It was wonderful and exhausting and a blessing.  We knew that this coming week would be a tough one for Kevin seeing how tired he was, but he and Rachel appeared hopeful regarding the appointments and meetings they were scheduling.

Kevin’s scans at Emory last week showed a new tumor in his brain and he went in today for radiology planning for a second radio-surgery on this second tumor that will happen week after next.  Rachel, after much finagling, was able to reschedule their trip to a day earlier (they leave early tomorrow) to a non-stop flight to UCLA for scans, a biopsy to determine if the current drug therapies are working – we are pretty sure they aren’t as his external tumors have visibly worsened over the last 3 weeks – and a strategy meeting with their lead oncologist at UCLA to determine next steps in treatment.

While Rachel was making calls, emails and packing, a tree fell on their house.  Yes. You read that right.  About an hour or so ago, a tree fell on their house.  Nope, we do not have heavy winds in Atlanta right now.  Nope, no tornado.  Yes, we need your prayers right now. Prayers of gratitude for His protection as no one was hurt, prayer for continued protection – they have had so very many hardships in the midst of Kevin’s 2 year + long battle with melanoma, prayer for peace for them, and as always a renewed HOPE.

A HUGE thank you goes out to the members of the Adair Park community who are rallying around them as they sort through the necessary steps to repair the damage while they are away.  Y’all are amazing.  Thank you.

Sarah here again!

First, a brief update on Kevin and Rachel.  Kevin has continued to experience symptoms and side effects that may or may not indicate that, in some ways, he is getting worse and in others,  better.  He continues to be very tired with minimal stamina, but ‘holding steady’ as it were.  Kevin has taken leave from work for a few weeks to primarily rest and recover as well as to visit with family and go to doctor appointments.  We hope you will join us to continue to pray for Kevin and Rachel.

Secondly, THANK YOU all so very much for supporting our brother Josh Marinacci and his WebOS fundraiser!  With your help Josh was able to make a really BIG dent in the “Bridge the Gap” campaign and we just can’t thank you all enough!

Finally, we are grateful for Elise Hamel who is hosting a Pampered Chef Fundraiser for the month of October!  Pampered Chef has everything item and gadget you could ever want for the kitchen, and lots others for the home.  We hope you’ll peruse the products offered and make a purchase to support the Hill Family!

Here’s how it works:

• 10% of sales  made during the month of October will donated to the Hill Family if the total purchased during this fundraiser is less than $600.
• 15% of sales  made during the month of October will donated to the Hill Family if the total purchased during this fundraiser is $600 or more.
• Elise will contribute 100% of her commission which means up to 30% of sales will be given to the Hills.
• An additional $3 will be contributed for every future Show booking from the fundraiser. This could be for anyone who wants to host a catalog/online show anywhere around the country.
• $1 of every purchase of a “Help Whip Cancer” limited edition product is donated to the American Cancer Society (this does not deduct from the % given directly to the Hills)

To order, follow these steps:

1. Visit www.pamperedchef.biz/ehamel and click on “shop online”
2. Enter “Hill Family Fighters” or the name “Rachel Hill” in the Host/Organization Name
3. Click “search for host” (if you just click on “place an order” your order will not be counted towards the fundraiser)
4. Select “Hill Family Fighters” and you will be taken to the store.
5. After you have selected your items, you can proceed to check out.
   * NOTE: ALL customers must select direct shipping.

Also, if you have a purchase of $75 or more, you can select one of this month’s guest specials (in it’s own category on the left hand menu of products) for free.

If you want to order but aren’t comfortable placing an order online or have problems ordering or questions on products, let us know and we can put you in contact with Elise directly and she can take your order over the phone.