- October 24, 2018 at 4:16 pm
Okay friends, what do you have?? What’s working?
Heres where we are:
Jake has done biochemo, interferon, pembro, ipi, Mek/Taf, lots of radiation(including brain), and is now on a clinical trial.
The trial he ended up on is with Omid Hamid in LA. It’s a Cmet inhibitor with an infusion of a pembro type drug once a month.
He felt like 3 new tumors grow when he started this. We haven’t had a scan since he started. He has lost 6lbs and feels lousy. Still up and going though. We are spending SO much money traveling!!! But will go wherever needed of course.
We were hopeful about the trial “BrianP” did at MDAnderson with dr Yee. But found out today Jake doesn’t qualify due to a genetic marker. It was a non invasive adoptive T-cell trial w no big chemo. He really wanted that one.
Now what???? Oh, and we gave no Mel specialist now. Our doctors left our hospital! No replacement for 18 months so far. On our own here. Plus I went crazy in Hamids office this week trying to get test results. It was NOT pretty! He can do the ipi/nivo combo here in Utah. Haven’t tried that. Also, Jake wants to just clean out his body. He believes in all the health stuff and does all the supplements and diet. He is ready to just go to oasis of hope in Mexico. He is discouraged and really down. He won’t talk about any of this anymore so his dad and I are searching, defining the options, and letting him choose from there. What else can we do??
its in his heart and brain among all the other places so it feels important to make a good decision.
K. There you go. A novel. Thank you. I think about many of you often and keep you in my prayers as I pray for Jake. It’s a hard thing you are doing. I know.
- October 24, 2018 at 5:23 pm
Hi Kerri, there have been some data coming out this week from ESMO in Europe which is kind of like ASCO but help in europe not Chicago. Two things that I have been following is Dynavax's SD-101 + Keytruda (this is a TLR-9 agonist and is injected into tumor like T-vec and data from phase one trial has shown 33 out of 47 or 70% or patient responded. Other trials that I have been waiting to here more on is NKTR-214 + Nivo trial again another injectable, the hope with the injectables is to get the t-cell to go into the tumor so that the Pd-1 has something to work on. When patients have cold tumors with not t-cells these new injectables are suppose to get the immune system going. Here is a link from ESMO and Dr. Thomas Gajewki of Chicago who works with dr. Jason luke. I follow both on twitter and they keep up to date with all the trials and have links to the data. Best Wishes!!!Ed p.s. I know the combination of Ipi/nivo has a lot of side effects but you can't argue with the response rate!!! https://www.vjoncology.com/video/t0dd2daiuwa-promising-immuno-oncology-strategies-for-melanoma-lag3-sting-rig-i-tlr/
- October 24, 2018 at 5:32 pm
If you look at Dr. Jason luke's twitter post, there is a graph showing Ipi/nivo survival at 4 years as well as nivo and ipi arms of the checkmate 067 trial. This is the trial that I was luck enough to get into back in Jan of 2014. The ipi/nivo combination is still doing the best, something to consider going forward!!! Here is a link to the article that goes with the graph.https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30700-9/fulltext
- October 24, 2018 at 5:38 pm
- October 24, 2018 at 5:38 pm
- October 24, 2018 at 7:36 pm
I think of you and Jake often. My son is on Nivo as adjuvant therapy and so far he is doing well on it. He has had Very few side effects. It does sound like people have more side effects from the Ipi….but it also sounds like people have good success with the Ipi/Nivo combo….I think it’s definitely worth a try if Jake has not already done it….
It looks like Ed has tons of info from his replies as well.
And I totally get the whole “going crazy” thing…trust me I know I am the same way. He’s your son and you are his best advocate. There is nothing wrong with that.
Thinking positive thoughts and prayers for you always.
- October 25, 2018 at 12:03 am
I don't really have anything more to add than what Ed has noted. I just wanted let you know that I am holding you and Jake in my heart. I wish you my best. Celeste
- October 25, 2018 at 3:08 am
I'm sorry the Adoptive Cell Therapy did not work out. LIke others have mentioned, I've always been a fan of the ipi/Nivo combo. It's such a powerful combo and probably the most timeliest option right now. Even just getting one or two doses while you continue to look for the next option could be a huge benefit. Pray for you guys everyday.
- October 25, 2018 at 12:15 pm
Kerri – thinking of Jake and your entire family as you search for the best option. Praying for you all.
- October 26, 2018 at 3:11 pm
We are all pulling for Jake and your family. It is hard enough being an adult and dealing with this diease but heart breaking when we have children in the same circumstances. I don't have anything to add to options but wanted to reach out to you regarding costs and resources. The American Cancer Society offers different types of resources for travel and other accommodations. You should also try inquire with the hospital's social workers. Talk to other patients. (they usually had a lot more resources, I learned so much from them) I also found when booking hotels if you asked if they offered discounts for patients receiving care at local hospitals they gave pretty good discounts. (better than American Cancer Society discount) I know Lyft offered free rides to treatments and airports. Also, try the Ronald McDonald Houses. That would help with the lodging and meals.
MD Anderson is a great place and traveling to the facility is very simple compared to traveing to San Francisco. I took the super shuttle from the airport, stayed at a hotel that offered a shuttle, and took their shuttle to and from the hospital. great thing about MD is if you need another test they are able to schedule it usually the next day. This saves on return trips. Also, I loved my whole experience with MD Anderson. They are on top of their game. Not just on the medical sprectrum
Keeping your family in our thoughts and prayer chain.
- October 26, 2018 at 9:28 pm
Love this forum.
Good information and great support and friendship.
Jake is up and down this week…taking a break going back to Hawaii for a week where he lived. Then scan and find that “silver bullet” BrianP told Jake he could find!
this is the one place where people’s thoughts are real you really do get it.
Prayers and love,
- October 27, 2018 at 1:49 am
Hi, you mention that you are spending a lot on travel. If you are going to LA frequently maybe there is a place near there where you could stay. I live in San Diego and your family would be more than welcome in our home for the time around treatments. We’re 2.5 hours drive from LA.
MelanomaMikeParticipantHi Kerri, iv been here on the sidelines for months Rootin’ for your boy Jake, & just wish Melanoma would LIGHTEN UP on him! I mean gosh darn right?.. Well, ipi & nivo is an option & it is a powerful weapon so, if its chosen, this very well could be his key to increased stabilization and or NED…fingers crossed…
- October 27, 2018 at 5:41 pm
- October 27, 2018 at 8:00 pm
I wanted to reply earlier this week but since I was on my ipad I did not (hard to type plus to answer the captchas) – also I think Ed's answer was a good one and that came early on.
Can I ask some questions though?
Why not ipi-nivo: this would seem the obvious next step rather than a trial. If its because ipi caused side effects then maybe nivo or pembro alone could be good. Side effects are not too bad generally, and less than ipi.
Why not TVEC? Is Andtbacka still at Utah since I think he is super keen on TVEC (too keen?). TVEC plus pembro seems to be working for me (dont want to jinx it) unlike pembro alone. And there are the other intra lesionals Ed mentions (and these are on twitter if you just follow jason luke and others on twitter).
Am a bit surprised Hamid's office was slow on blood tests. I often have delays with stuff like that (I do the tests early to reduce the risk of this) but i get used to it and work around it. Strange that a top office has the same problems as my hospital.
Maybe MD Anderson is something to look at too, as others mention.
I would be thinking ipi/nivo and/or intralesionals with pembro or nivo as ways forward. Plus do find a melanoma specialist Jake feels good with.
Am glad Jake is having a break and I hope these options plus finding a melanoma specialist and not being left alone will help him and all of you
best wishes Mark
- You must be logged in to reply to this topic.