Mario from Arkansas - Dx 2007

[Olga]

Happy birthday, Mario!

[cachabamba10]

Thanks Olga, I had a awesome day, I turned 25 kind of getting old .

[Olga]

Happy 26th birthday, Mario!
Olga.

[D.ap]

Mario
Happy birthday to you! Late but still with all the well wishes .
Love
Debbie

[Amanda]

Happy late Birthday day <3

[cachabamba10]

Thanks Guys, I had a good day with my sister and family.

Mario

[D.ap]

Marios journey on cometriq

http://www.cureasps.org/forum/viewtopic.php?f=66&t=905

[cachabamba10]

Its been a while since i updated this section of the forum, I have been updating in the Cometriq site. Well unfortunately Cometriq kind of stop working and I had to find a different option. My illness has progress quite some and my lung tumors have now become symptomatic. The pain has become a big problem, I landed in the ER because of it once, its that bad. The biggest issue is that I develop Hyperthyroidism at the same time of having side effects of Cometriq. I ended up losing around 30 pounds and a lot of muscle mass. Really it was quite something, the thyroid problem went unnoticed by me and my doctors and I was really close to ending in the ICU. I was bless that we finally found out the problem and they started me on the thyroid treatment and it help.

My check up came up and I made my trip to Houston and Dr. Benjamin told me the news that Cometriq wasn't working as much and that a new clinical trial would start in MD Anderson and he believe that I would be a good candidate for it. I waited for a phone call from my Sarcoma Team and I got the phone call at the beginning of September and on the 12th of SeptembNer I was back in Houston. I sign the consent later on and received my first treatment on the 24 of September and will be taking part of this clinical trial. I am praying and hoping beyond all hope that this works. I am on a stage that if there is no stop to the growth. I will probably loose my long battle to this cancer.

The Clinical trial is a Immune Therapy treatment with two agents, I will post the agents later on and all the specifics. There is only two ASPS patients counting myself but there is many other sarcoma patients. The clinical trial will open up to 150 slots if there is good results with the first patients. I am very optimistic with the whole team and with this trial. Dr. Benjamin is really optimistic, he is not the main investigator on the trial but because he has such seniority in the sarcoma team he still is able to be my doctor in the trial. The main investigator on the trial is the Dr. who was on the Miami ASPS day of learning. I forgot the name at the moment if anyone needs it I will look for it.

There is a lot of new faces here on the ASPS website and I welcome everyone and just pray that everyone is doing the best they can. ASPS sucks big time and we the ones affected by it are the only ones who understand how hard this illness is. I pray for everyone on this board and wish the best with everyone's treatment and with everyday we have. Live day by day and enjoy and laugh daily as much as you can.

If anyone has any questions with my clinical trial in MD Anderson please do not be shy and ask. I might take some time to answer as I am undergoing a lot of doctor's appointments and such. But I will answer I promise,

Take care guys;

Mario

PS I now have a pain management team and I have added Gabapin,Meloxican,Tizadine,Morphine ER,and Oxycodone. They also wanted to give me some steroids and something else in injection form but because of my trial I can't have any steroids so no shots right now. Also, I forgot I have Lydecane patches that I use.

[Olga]

Mario, thanks a lot for updating despite all the negative stuff you have to deal with. I just posted the link to some article yesterday re. use of some drug to deal with the opioids related constipation and coincidentally they found that it prolongs patient's lives:
http://www.cureasps.org/forum/viewtopic.php?f=3&t=1274
may be you can use it.

[D.ap]

Mario
Thanks for checking in and giving us an update
I , for one,will be looking forward to hearing of your scan reports
When are the first set of scans scheduled ?
Praying for great results my friend

Love
Debbie and family

[Jorge]

Mario,
thanks a lot for the update.
I hope your pain can be well controlled and the Immune Therapy works on you and help to reduce the pain and help you regain some strength.

Lynette

[ntran727]

Hi Mario,

Happy belated birthday. The trial sounds promising and I hope that it works for you. Keep us posted with your response!

[Bonni Hess]

Dear Mario,
Thank you for your very thoughtful update and private message response. As I told you in my private message to you I was concerned about you when you weren't present at the recent Miami ASPS Workshop which you were so thoughtful to share the information about with those of us on this Board, and which I knew that you had planned to attend and were looking forward to attending. I am so sad and sorry that your heartbreaking failed Cometriq treatment and subsequent concerning and now symptomatic disease progression prevented you from attending the extremely beneficial ASPS and Sarcoma Days of Learning Workshops. However I am grateful that you were able to be at MD Anderson receiving your first treatment for the promising new Immunotherapy Clinical Trial for which the lead investigator is Dr. Breelyn Wilkey, the very dedicated Sarcoma oncologist from Sylvester Sarcoma Center at the University of Miami who was instrumental in planning, organizing, and conducting the ASPS and Sarcoma Workshops, and who Brittany and I had the great privilege of personally meeting and talking with. She is very excited and optimistic about the new two agent Immunotherapy Clinical Trial that she is conducting and that you are now participating in, and she is deeply committed to finding an effective treatment and cure for ASPS. It is my greatest hope that this very promising new treatment will provide you with the disease stabilization that you have so courageously fought to obtain during the past nine years of your challenging ASPS battle. Continue to stay strong dear Mario and let Hope lead you through each day. You have such a bright and positive attitude and wonderful perspective in spite of all that you have been through, and your philosophy on Life is very inspirational and humbling. Thank you for sharing the gift of it with all of us on this ASPS Community Discussion Board.
Regarding your heartbreaking increasing pain issues, have you/your pain management team doctors considered oral Fentanyl? Brittany's buccal Fentanyl lollipops are one of the only drugs that provide some pain relief for her severe chronic spinal pain, in addition to marijuana which helps her to relax, alleviates her nausea, and stimulates her appetite to prevent weight loss which would also be helpful for you.
We are currently in Edmonton, Alberta where Brittany had her four month Cediranib Clinical Trial chest/abdominal/pelvic scans this morning, and, as always, we have great scanxiety as we await the scan results which we will receive tomorrow, but we are holding VERY tight to Hope that they will show continued disease stability, as is our great Hope for your scan results when you have your first Clinical Trial scans. Please take care dear Mario, know that you are being held VERY close in my heart and my most caring thoughts, and keep the Board updated as you are able.
Reaching out to embrace you with gentle hugs, deepest caring, healing wishes, much love, and continued Hope,
Bonni

[D.ap]

Hi Mario
How is the clinical trial going ?
I hadn't heard about it lately
Thinking of you today
Love
Debbie

[cachabamba10]

Hello Everyone:

Info on clinical trial is as follows:

A phase II multi-arm study to test the efficacy of immunotherapeutic agents in multiple sarcoma subtype
#2015-1071
Study Chair-Neeta Somaiah
Phase II study of Durvalumab with Tremelimumab

I hope that info helps.

I am going for my check up on the 21 of Feb. It will be my 6 month check up is a very crucial one. I haven't seen any shrinkage really since the only one we saw was a 1mm shrinkage and I don't count that as shrinkage. Nodules on lungs have grown some but in a very limited amount. Dr. Benjamin believes this is due to the treatment. I believe that we will know for sure on this upcoming visit. I have seen many patients with good results from this type of drugs and I am praying that I can join them soon.

Side Effects:

I really have been bless because I haven't had many side effects. I have had the usual fatigue but its hard to say if its from the drug or the cancer itself. I have had some stomach related problems and some lower abdomen pain. My chest pain has gotten a little bit better also. Overall I have felt a lot better since taking this drug I have gain some weight and I finally enjoy eating again and I am able to move around better. The one thing that hasn't change is the fact that I need a wheel chair for long distances. My chest start hurting really bad if I walk too much. My pain clinic is talking about using RFA on my nerve ending in my back and I don't know if I really want that. I have read a lot on it and its scary in a way.

blurred vision, and sometimes it takes a while for me to focus on things.

very heavy heartbeat, and circulation problems.
numbness of my extremities like hands and feet.sometimes only fingers.
a weird throat swelling like problem but it goes away

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Last week I had a brain MRI and a MUGGA test. The brain MRI came back negative super awesome news and the MUGGA test came back with a ejection rate of 61%.

I am very glad for this news.

I will try to update this as much as I can, I pray that everyone is doing as best as they can.

A Friend;

Mario Arevalo