Ivan rocking it since 2003

[arojussi]

To me radiation (around 4x8 gy) sounds most effective for abscobal effect based current evidence. Of course there isnt lots of data yet. I dont know any reason not to have radiation and infusion during same day and recommendation to have them in different days is most likely just based on the fact that there is not lots of evidence proving that it is save to have them in the same day. At this point I think we know how I feel about playing safe.

[D.ap]

Ivan after reading of the radiation being introduced with the the second infusion I felt a sense of relief .
I truly feel like you will whether the Med ok but number 1 infusion can be monitored for side effects huh ..
You all are so in our thoughts
Love to you and family
Debbie

[Deborah]

Ivan,
My son (15 year old patient from Denver on Forum) was treated with radiation and Keytruda for the progressing inoperable tumor in his sinuses 1 ½ years ago. He continues the keytruda and the tumor is shrinking slightly and less active with every scan. In addition, he has multiple tumors in his lungs and one at the base of his spine. All are stable. He tolerates the treatment well, and started college in the fall - taking finals as I write this. This is the longest time he has gone without progression since his diagnosis in 2013. We continue to keep your family in our prayers.

[Ivan]

Hello, everyone. I will be getting pembrolizumab injection on Friday, everything has been arranged.

Today I went to the hospital ER because I was feeling off, although nothing terrible. Irregular heartbeat, and chest tightness, and such. ECG, heart rate, and blood work weren't too abnormal, so I was sent home. Hopefully I can hold out long enough for the immunotherapy to be given a shot.

[Bonni Hess]

Dear Ivan, I am so sorry about your new challenges and concerns, but am grateful that you are scheduled to begin the promising new Pembrolizumab treatment in two short days on this Friday, and I am holding VERY tight to Hope that it will be VERY effective and successful in dramatically shrinking/destroying your mets and stabilizing the progression of your disease. I am grateful too that your ER tests didn't show anything too abnormal, and am Hopeful that your symptoms are more related to the stress and anxiety of everything that you are going through right now instead of being caused by your heart mets. Based on the VERY encouraging positive results and success of other ASPS patients being treated with Pembrolizumab, there is MUCH reason to Hope that you too will have a successful response dear Ivan. I know how very frightened you are right now, but try to find strength in knowing that there are several new PD-L and PD-L1 drugs including Pembrolizumab which are showing great success for ASPS patients, so you have promising treatment options that weren't available before . Please know that all of us Hesses are rooting for you, holding you VERY close in our hearts, and sending our MOST positive thoughts, energy, and healing wishes your way. With warm hugs, deepest caring, love, and continued Hope, Bonni

[D.ap]

Ivan

I’m so sorry you had a scare today but thankful the tests came back looking good.

Bonni certainly summarized a lot of what I was feeling and I wanted you to know , the Pearson’s are thinking and sending prayers your way as well .
Love
Debbie

[jenhy168]

Good luck today with starting pembrolizumab. Hoping for positive results to come from it...

Jen

[D.ap]

Morning Ivan
I’m of the opinion you’ve had the infusion yesterday and hope to hear of your experience , when you get a moment.
Will you be opening a topic for reports ?

I was wondering if you would be interested in setting up a discussion topic on your thought of gut microbiome modulation?
I’ve been seeing and reading more and more on the topic.
To me the inflammation aspect sure correlates , simple put, to cancer progression. Not only on a scan basis but a chemical basis?
Have a wonderful weekend .
Love
Debbie

[Olga]

Thanks Deb, it is a good suggestion.
I've opened the new topic for the Keytruda reports here:
http://www.cureasps.org/forum/viewtopic.php?f=76&t=1506

[Ivan]

It's been three days since the pembrolizumab injection. I don't feel anything so far. Now you all have no idea what I'm like and have never seen me, but I wanted to show you a joke I made 5 hours after the injection when I went to the gym - https://youtu.be/7GTWEPk_7Sg Hope you appreciate the drug cost humor.

Dear Ivan, I am so sorry about your new challenges and concerns, but am grateful that you are scheduled to begin the promising new Pembrolizumab treatment in two short days on this Friday, and I am holding VERY tight to Hope that it will be VERY effective and successful in dramatically shrinking/destroying your mets and stabilizing the progression of your disease. I am grateful too that your ER tests didn't show anything too abnormal, and am Hopeful that your symptoms are more related to the stress and anxiety of everything that you are going through right now instead of being caused by your heart mets. Based on the VERY encouraging positive results and success of other ASPS patients being treated with Pembrolizumab, there is MUCH reason to Hope that you too will have a successful response dear Ivan. I know how very frightened you are right now, but try to find strength in knowing that there are several new PD-L and PD-L1 drugs including Pembrolizumab which are showing great success for ASPS patients, so you have promising treatment options that weren't available before . Please know that all of us Hesses are rooting for you, holding you VERY close in our hearts, and sending our MOST positive thoughts, energy, and healing wishes your way. With warm hugs, deepest caring, love, and continued Hope, Bonni

Hey Bonni thanks for the well wishes. Same to you and your family. I'm always pleased to see that cediranib miracle response in Brittany continuing.

Now, I don't mean to get all philosophical on you but I guess if I never say anything then picture would be very incomplete. What is there to be frightened of - death? Certainly not, I have accepted it long, long ago. Scared of living a crippled existence, perhaps? Well sure, but that's just a choice. We do have compassionate death here in Canada if worse comes to worst. Truthfully, I'm just indifferent now. Most things that people take pleasure in are lost on me, and have always been. For example, I have never celebrated Christmas / winter solstice in my life, and have never had the slightest inclination to do so. To me, Dec 25th bears significance because it is the ONLY day of the year that the gym is closed. The last time I've gone "shopping" was pretty much never in my life. Children, a family, and other things of that sort is something I will never have and do not have an interest in.

Don't get me wrong, I'll go through with all the treatments and do all the stuff prudently, but I don't particularly care about the outcome at this point. I have a tremendous amount of respect for the work that Dr. Rolle and Dr. Littrup (among others) have done on me. There's a lot of gratitude I feel for the medical professionals who have allowed me to keep going, and I think I've made them proud for my part. I don't know what I feel now that I wrote that (I often don't know what I feel), but writing that has brought tears to my eyes. I know that having done ~25 surgeries / ablations, I could do 25 more if need be, tired as I may be. However, if someone cornered me and said listen give me a good reason, an explanation - why bother to keep living? I'm afraid I don't have a compelling answer to that question. One can always defer to something like "your friends and family need you" but to me that's not a good answer. I don't think our worth derives from other people, so I don't accept that as satisfactory. An argument I've made in the past is that the world is interesting, and it's interesting to learn new things. Yes, sure, but that's subjective.

Morning Ivan
I’m of the opinion you’ve had the infusion yesterday and hope to hear of your experience , when you get a moment.
Will you be opening a topic for reports ?

I was wondering if you would be interested in setting up a discussion topic on your thought of gut microbiome modulation?
I’ve been seeing and reading more and more on the topic.
To me the inflammation aspect sure correlates , simple put, to cancer progression. Not only on a scan basis but a chemical basis?
Have a wonderful weekend .
Love
Debbie

Yes, but this document - www.goo.gl/xZZATr - first needs to be completed and I don't have the energy to do so at the moment.

[D.ap]

Hello Ivan

Love your candid jokester you -tube.

Insurance doings / business Is lackluster to human involvement HOWEVER with results , I feel the monies will be there my friend .
I believe your mom mentioned it is a possibility when the Keytruda shows progress to apply for funds?

You’ve *hoed and then ran *(a gardening term ) the long row of progress , Ivan.
You deserve success as well as rest , heron forward .

Please know I feel your need to just ride and reap what’s ahead without huge expectations. But it’s a step in the right direction, I feel.

However know that our family AS WELL as all the icureasps family prayers , love and support are there for you , Ivan.

Love to you right now , as well as the proverberial hug my
friend ,being sent via my personal only known mail system..prayer.

May family and friends be your comfort today and always .

Our love to you

The Pearson’s

[Disco76lover]

Hi Ivan, our close friend is on the pembrolizumab and he has absolutely no side effects whatsoever. He has terminal lung cancer BUT this drug has drastically reduced his lung tumors after a couple of months on it. I know it’s a different cancer but I wanted to share this with you as I am very hopeful. You are in my thoughts and I hope and pray that the drug does what you need it to do. X

[jenhy168]

Thanks for sharing your thoughts Ivan....hope the treatment is effective.

[jcs2007]

Ivan, thanks for sharing your insight on your past and present journey. I have followed you and Brittany since our diagnosis in 2007. My son also headed to the gym after keytruda infusion but it was 2 days later since the next day he usually feels like he has the flu. Best wishes on the treatment and dealing with funding issues.

[Bonni Hess]

Dear Ivan, I Hope that this finds you beginning this New Year 2018 feeling good, tolerating your new Pembrolizumab treatment well, and with great Hope of Pembrolizumab treatment success in shrinking/destroying your mets and stabilizing progression of your disease. Thank you for your very open, honest, and insightful expression of your feelings regarding your long courageous battle, and Life in general. I know and understand how very discouraging this ongoing and seemingly endless battle is, and I so deeply admire and am profoundly humbled by the ability of you, Brittany, and all of our ASPS Community patients to continue to fight to Live through all of the pain, suffering, fear, heartache, stress, challenges, and treatments on this roller coaster journey. Despite what you said, I believe that you have MUCH to Live for and MANY reasons to keep fighting to Live including your passion for the beauty of this World and nature as SO talently captured in your incredible photographs, your enjoyment of traveling, and your passion for physical fitness activities. You and your very courageous 14+ year battle have provided Hope and inspiration for countless ASPS patients and their families, and your very open and honest expression of what so many feel frees others to not have to think that they always have to "be strong". Thank you for the special and unique gift of you to all of us in this ASPS Community dear Ivan, for all you do, all you share, and all that you are. With warm hugs, deepest gratitude, Happy Healthy New Year best wishes, much love, and continued Hope, Bonni