Update on next steps

Hi Josh,

I was thinking about you and praying for you yesterday. My husband was there too–all day. We are so grateful for living in Houston. 

Thanks for your update on treatment options for you. With my limited ability to absorb all of the information out there, I count on people like you, Celeste, and others who take the time to remind us of what my husband may be facing next. My love is Stage 3C with three more months on targeted therapy with Dabrafenib/Trametinib combo. He has currently NED but dealing with eye issues from side effects.

The effort to beat this beast is tiring and stressful, but just know how much others admire your blazing the trail for those about to walk in your path.  I send prayers for you to experience peace and joy–day by day.

Corinne (wife of my Randy)

Hi Josh,

I was thinking about you and praying for you yesterday. My husband was there too–all day. We are so grateful for living in Houston. 

Thanks for your update on treatment options for you. With my limited ability to absorb all of the information out there, I count on people like you, Celeste, and others who take the time to remind us of what my husband may be facing next. My love is Stage 3C with three more months on targeted therapy with Dabrafenib/Trametinib combo. He has currently NED but dealing with eye issues from side effects.

The effort to beat this beast is tiring and stressful, but just know how much others admire your blazing the trail for those about to walk in your path.  I send prayers for you to experience peace and joy–day by day.

Corinne (wife of my Randy)

Hi Josh,

I was thinking about you and praying for you yesterday. My husband was there too–all day. We are so grateful for living in Houston. 

Thanks for your update on treatment options for you. With my limited ability to absorb all of the information out there, I count on people like you, Celeste, and others who take the time to remind us of what my husband may be facing next. My love is Stage 3C with three more months on targeted therapy with Dabrafenib/Trametinib combo. He has currently NED but dealing with eye issues from side effects.

The effort to beat this beast is tiring and stressful, but just know how much others admire your blazing the trail for those about to walk in your path.  I send prayers for you to experience peace and joy–day by day.

Corinne (wife of my Randy)

Hey Josh!

Seems like a productive trip and also looks like MDA is giving you some real aggressive options…that's great!  The waiting sucks as we all know and have endured in some form or fashion, but the menu of choices seems to have opened up considerably..  The tumor harvesting if nothing lose would serve as a good backup -curious if they were harvested from your last procedure – but in any case, you have some strong therapeutic options!  

I've read over and over again on this site, that it's a matter of finding the therapy (or combination of therapies) best suited to your immune system.  With all that I've read from your journey, you're giving yourself the best chance for a positive outcome!!

You have the collective prayers and good vibes from our community of warriors.  Good luck in your decision and keep us posted!

All the best,

Stan

Hey Josh!

Seems like a productive trip and also looks like MDA is giving you some real aggressive options…that's great!  The waiting sucks as we all know and have endured in some form or fashion, but the menu of choices seems to have opened up considerably..  The tumor harvesting if nothing lose would serve as a good backup -curious if they were harvested from your last procedure – but in any case, you have some strong therapeutic options!  

I've read over and over again on this site, that it's a matter of finding the therapy (or combination of therapies) best suited to your immune system.  With all that I've read from your journey, you're giving yourself the best chance for a positive outcome!!

You have the collective prayers and good vibes from our community of warriors.  Good luck in your decision and keep us posted!

All the best,

Stan

Hey Josh!

Seems like a productive trip and also looks like MDA is giving you some real aggressive options…that's great!  The waiting sucks as we all know and have endured in some form or fashion, but the menu of choices seems to have opened up considerably..  The tumor harvesting if nothing lose would serve as a good backup -curious if they were harvested from your last procedure – but in any case, you have some strong therapeutic options!  

I've read over and over again on this site, that it's a matter of finding the therapy (or combination of therapies) best suited to your immune system.  With all that I've read from your journey, you're giving yourself the best chance for a positive outcome!!

You have the collective prayers and good vibes from our community of warriors.  Good luck in your decision and keep us posted!

All the best,

Stan

Hey Joshie,

I bet you are completely worn out…trying to heal from major surgery…doc appointments at a huge institution….trying to understand what different sources are saying…trying to decide the next step to take….especially when all steps seem to suck in significant ways! Man! I remember when searching for my trial/treatment….ALL of the above so well! Even being a medical person…after every visit, my sister or my husband and I would sit in the airport, scribbling madly on bits of paper, trying to recall exactly what had been said….trying to clarify what things meant. It is hard work! Then you add in all the other stuff….

Do wish they would/could use the tumor recently removed for your potential TIL therapy! Institutional crappola! I hate for you to have to go through another surgery…even a minor one! Oh well…

Depite all the misery and madness, I am sure your best path will become clear for you. We are all rooting for you. Hang in there. Breathe. Continue to heal. Much love, c

Hey Joshie,

I bet you are completely worn out…trying to heal from major surgery…doc appointments at a huge institution….trying to understand what different sources are saying…trying to decide the next step to take….especially when all steps seem to suck in significant ways! Man! I remember when searching for my trial/treatment….ALL of the above so well! Even being a medical person…after every visit, my sister or my husband and I would sit in the airport, scribbling madly on bits of paper, trying to recall exactly what had been said….trying to clarify what things meant. It is hard work! Then you add in all the other stuff….

Do wish they would/could use the tumor recently removed for your potential TIL therapy! Institutional crappola! I hate for you to have to go through another surgery…even a minor one! Oh well…

Depite all the misery and madness, I am sure your best path will become clear for you. We are all rooting for you. Hang in there. Breathe. Continue to heal. Much love, c

Hey Joshie,

I bet you are completely worn out…trying to heal from major surgery…doc appointments at a huge institution….trying to understand what different sources are saying…trying to decide the next step to take….especially when all steps seem to suck in significant ways! Man! I remember when searching for my trial/treatment….ALL of the above so well! Even being a medical person…after every visit, my sister or my husband and I would sit in the airport, scribbling madly on bits of paper, trying to recall exactly what had been said….trying to clarify what things meant. It is hard work! Then you add in all the other stuff….

Do wish they would/could use the tumor recently removed for your potential TIL therapy! Institutional crappola! I hate for you to have to go through another surgery…even a minor one! Oh well…

Depite all the misery and madness, I am sure your best path will become clear for you. We are all rooting for you. Hang in there. Breathe. Continue to heal. Much love, c

Josh, sounds like a good plan.  When I visited MDA last September, the first choice seemed to be the trial you're describing, but I didn't have the "right" HLA type.  As you're doing, I would definitely do the TIL harvest.  I had one in November, but they weren't able to grow cells.  Not a big deal, as they tumor they harvested had been radiated previousl and I knew the chances were lower than normal.  If necessary, I would attempt another harvest at MDA in a second.  (By the way, as hospital food goes, MDA is like a five star restaurant.  Impressive selection too.)

Josh, sounds like a good plan.  When I visited MDA last September, the first choice seemed to be the trial you're describing, but I didn't have the "right" HLA type.  As you're doing, I would definitely do the TIL harvest.  I had one in November, but they weren't able to grow cells.  Not a big deal, as they tumor they harvested had been radiated previousl and I knew the chances were lower than normal.  If necessary, I would attempt another harvest at MDA in a second.  (By the way, as hospital food goes, MDA is like a five star restaurant.  Impressive selection too.)

Josh, sounds like a good plan.  When I visited MDA last September, the first choice seemed to be the trial you're describing, but I didn't have the "right" HLA type.  As you're doing, I would definitely do the TIL harvest.  I had one in November, but they weren't able to grow cells.  Not a big deal, as they tumor they harvested had been radiated previousl and I knew the chances were lower than normal.  If necessary, I would attempt another harvest at MDA in a second.  (By the way, as hospital food goes, MDA is like a five star restaurant.  Impressive selection too.)

Hi Josh- So happy to see your update.  As everyone has already said, the decisions and waiting are soooo hard….even processing all the info from multiple opinions… but so important and glad you are able to travel and get some of the best thinkers, DOCs, etc in your corner.

Sorry you have to wait a couple of months for TIL Harvest but glad thats an option.

As always you have gotten some great info from many here…..

Thinking of you…..hope you are starting to recover from your last surgery and looking forward to next steps.

Always wishing you well.

jenny

Hi Josh- So happy to see your update.  As everyone has already said, the decisions and waiting are soooo hard….even processing all the info from multiple opinions… but so important and glad you are able to travel and get some of the best thinkers, DOCs, etc in your corner.

Sorry you have to wait a couple of months for TIL Harvest but glad thats an option.

As always you have gotten some great info from many here…..

Thinking of you…..hope you are starting to recover from your last surgery and looking forward to next steps.

Always wishing you well.

jenny

Hi Josh- So happy to see your update.  As everyone has already said, the decisions and waiting are soooo hard….even processing all the info from multiple opinions… but so important and glad you are able to travel and get some of the best thinkers, DOCs, etc in your corner.

Sorry you have to wait a couple of months for TIL Harvest but glad thats an option.

As always you have gotten some great info from many here…..

Thinking of you…..hope you are starting to recover from your last surgery and looking forward to next steps.

Always wishing you well.

jenny