Mario from Arkansas - Dx 2007

[D.ap]

Hello Mario
It's so good to hear from you
The brain scan report is awesome!!

The MUGG test looks good according to the article. Had to look it up.
http://www.cancer.net/navigating-cancer ... /muga-scan

So which med has a possibility to cause heart weakness?
Your chest pain was internal/lung wise? Looks like Cometriq side effect before?
How big are your lung tumors at this time?

SO glad to hear of weight gain. How is your thyroid doing?
I'm marking my calendar for the 21st and sure am sending prayers your way, my friend.

Take care
Love
Debbie and family

[Bonni Hess]

Dear Mario,
Happy Valentine's Day wishes and deepest gratitude for the important shared information about your new Clinical Trial, and for your very detailed and informative update about your current situation and the side effects of your Trial. Do you know if there are any other ASPS patients on your Trial ? I am SO grateful that your brain MRI was clear and that you are feeling a lot better, gaining some weight, and tolerating your new PD-L1 immune checkpoint inhibitor treatment relatively well , but I am so saddened and sorry to hear that you need to use a wheelchair for walking long distances because your chest begins to hurt too much . Is your chest pain related to your lung mets? Hopefully the Durvalumab with Tremelimumab medications will begin to successfully shrink and destroy your lung mets so that your chest pain can be relieved, ultimately alleviated, and you will no longer need a wheelchair. My very best wishes and most positive thoughts will be with you on the 21st for VERY good and encouraging scan results on your six month check-up, and I will be anxiously awaiting your update when your time and the situation allow. In the meantime, give yourself a special Valentine hug from me, keep feeling better, and know that my most caring thoughts, my healing wishes, my love, and my continued Hope are with you,
Bonni

[D.ap]

Morning Mario

I was wondering how the scans turned out?
Thinking of you

Love
Debbie

[cachabamba10]

Hi everyone;

So its been a while since i update my posts, I am doing good. Remember the 6 month check up I had. Well, it didn't go well. The scan back then showed continue growth and I surpass the 25% allotment of growth in the trial( I was at 30% growth). What that means is that they had to kick me out of the trial because the drug wasn't working. At least thats what the legal and paperwork says. I was really sad at this back in the spring time. Good news is that Dr. Benjamin fought with the clinical trial people and argued that he believed that the growth was due to how the medicine works. He ask to see if I could be given a 6 weeks off drug time. If after the 6 weeks a new scan show shrinkage on the lung mets I would be allow to return to the trial. There was some pushback, but finally Dr. Benjamin was allow to give me the 6 weeks off and re-scan me then and see what happens.

I was allow to fly to San Francisco and spend some amazing time with my family in the Bay Area, also on my stay in San Francisco I was fortunate to visit the old team of the ARQ197 clinical trial and say hi to them. Sadly, Dr. Dubois has change location and I did not get to see him. UCSF childrens oncology department has a new building and its amazing. People in the Bay Area should really be grateful the facilities are top notch!!

As the weeks went by I started to feel better and better and I had hope that my new scan would follow up with good results. Finally the day of the scan came and oh my gosh I was so happy. There was substantial shrinkage on all lung mets. It was so much shrinkage that I was back to the same levels that I had started with back in September of 2016. Everyone on the team was so happy, I am currently back on the trial and received my 7th treatment. I will be getting my scans done on July the 5th and see how things are going.

I am feeling super better to the point that my Pain Management Clinic is taking me off MS Contin and trying to lessen my pain medication. I am super happy and hope that since it seems like things are working. Hopefully they finally open up the trial for more people. Just a thought for everyone, give this medication time and if it seems like its not working take some time off and see if you see shrinkage.

I hope everyone is doing okay,I pray for everyone every week.

God Bless;

Mario

PS I always had a spot on my liver that they thought it was a fatty tissue. Now they are calling it metastasized disease. I am not very happy at this, and the other thing is that. My liver spot was the only one that did not shrink but stay the same. Hopefully we see a better result on the 5th of July.

[D.ap]

Mario
What excellent news !!
I need to locate my glasses and finish my response .
Love and hugs ,
Debbie

[D.ap]

Mario

I've linked everyone to your post when and what clinical trial began .

http://www.cureasps.org/forum/viewtopic ... =45#p10351


Remind us if any ablation has been performed on the liver?
So you are having a CT on July 5 because you have them monthly?

How's your weight doing for you ?
All these nosey questions however I'm am sure sharing in your joy of shrinkage today ! Your doctor rocks!

Good news is that Dr. Benjamin fought with the clinical trial people and argued that he believed that the growth was due to how the medicine works. He ask to see if I could be given a 6 weeks off drug time. If after the 6 weeks a new scan show shrinkage on the lung mets I would be allow to return to the trial. There was some pushback, but finally Dr. Benjamin was allow to give me the 6 weeks off and re-scan me then and see what happens.

Love
Debbie

[Olga]

Mario, thank you very much, I opened the new sub-forum in ICI trials here for this trial:
http://www.cureasps.org/forum/viewforum.php?f=73
http://www.cureasps.org/forum/viewforum.php?f=88

Mario is on a trail NCT02815995 https://www.clinicaltrials.gov/ct2/show/NCT02815995
Multi-Arm Study to Test the Efficacy of Immunotherapeutic Agents in Multiple Sarcoma Subtypes
Agents tested are both Immune checkpoint inhibitors - Durvalumab ( PD-L1 directed drug) + Tremelimumab (a fully human monoclonal antibody against CTLA-4).

[Bonni Hess]

Dear Mario, I Hope that this finds you having a continued successful response to your very encouraging Immune Checkpoint Inhibitor Trial. Since your last Board update was July 23rd and you said your next scans were scheduled in September I am Hoping that you can post just a brief update when your time and the situation allow. It seems that several of our ASPS Community members are VERY thankfully having very successful responses to various Immune Checkpoint Inhibitor treatments which is providing great Hope to those of us following the treatment experiences and results of you and the others that are receiving this very promising new treatment. Take care dear Mario, have a wonderful and bountifully blessed upcoming Holiday season, and keep in touch as you are able. With warm hugs, special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Hello Mario

It looks like at the CTOS conference yesterday , Breelyn announced that the MD Anderson trial with 6 ASPS patience got good reports ?
As did the Miami trial.

Let us know how you are doing when you get a moment .

Love Debbie


Breelyn reports (twitter)

“Great day for ASPS research- kind of took front center at #CTOS2017. Neeta Somaiah from MD Anderson presented beautiful data showing 3/6 patients with ASPS having responses to durvalumab plus tremelimumab, and our axitinib and pembrolizumab study showed 44% of ASPSers with responses- looks like immunotherapy is here to stay! Finally NCI showed 2/6 Asps with responses to cabazantanib! Manny Alvarez Foundation #kickASPS”

https://www.healio.com/hematology-oncol ... ed-sarcoma

[Olga]

Mario - how are you? How long is it after your immunotherapy trial ended - are you still getting scanned for it?

[cachabamba10]

Hola everyone!!

I hope that everyone had a good Christmas and will be having a good New Years. It's been a while since I have updated everyone on this site. I have been doing really good, just had my 3 month check up on the 6th of December and I also had a Cholecystectomy on the 10th of December. Surgery went fine and the pathology report for the surgery came back with the usual Chronic Cholecystitis with Cholelitiasis. I am finally starting to feel better since surgery and have started to go back to the gym and be active again. Just last day, I was able to do my usual 65 minutes on the stair master and burned 745 calories!!

My check up on the 6th was a pet scan with contrast. It showed continued shrinkage, especially of one spot. Also, only one tumor on my lungs show any FDG activity. All other spots show no activity whatsoever. Dr. Benjamin order a pet scan this time because he was wondering what it would show. We are very pleased with the results and Dr. Benjamin spoke to us about doing a local treatment on the one spot in the right lung that showed activity. My next scan is schedule for the first week of March. I am feeling extremely well and feel bless to be feeling this great.

Olga I believe its been 13 months since my last dose of treatment.

[Olga]

Mario - thank you for the update!
we were wondering how are our ASPS patients doing after their immunotherapy checkpoint inhibitors trials are over, when the good response was achieved but the treatment was stopped due to a treatment duration limitations as per a trial design. Usually it is 24 months at max.
I am sorry to her re. your cholecystectomy surgery. Do they think it might be a side effect from the trial?
I also want to compliment Dr.Benjamin for watching you closely after the trial is ended. We just recently had a post from Jolie re her mother from California - Dx Oct 2013 case. She also had a very good response to another ICI drug at their local hospital and as I understand she had an excellent result but the progression in a single met was missed and now it put her life in danger, so your doctor idea to proactively cryo or SBRT or something else locally treat this single met is just right. Let him knpw about Jolie's mother from California case. Read it below. We do not even know how is she doing now.

[D.ap]

Hello Mario

So glad you are having good results ,

as well of as your recovering from your gallbladder surgery.

Looks like gallbladders can and will get stones (number 1 reason Chronic Cholecystitis ), after low and or high thyroid
diagnosis .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4940627/
Your bout with hyperthyroidism -

http://www.cureasps.org/forum/viewtopic ... roid#p9705

You had undiscovered thyroid issues back in 2016 ish after taking cometriq?

Are you still hyperthyroid ?


So glad you checked into say hello .
Happy holidays .

Love

[D.ap]

Happy birthday Mario!
Hope your scans brought good news.
Love

[cachabamba10]

Hi Everyone!!!

I have been MIA from this forum for a while and I apologize. Just wanted to let everyone know that I am doing good. Dr. Benjamin and everyone on the team have agreed and for the first time since I started this fight. We will be doing 6 months check ups instead of 3 months. This is huge news for me, its a good thing but at the same time. I am a little bit worried in case something pops up. But due to the high amount of scans that I have gotten every year since 2007 and everything that comes with treatment. I believe that it might be a good idea to give my body some rest. It was a hard decision on my part to allow it, but I think it will be for the best. I still will do my yearly Brain MRI, which I already had done and it was clean. I also will be doing a Echo yearly, which was clean this year and my yearly bone scan as well. I just had my latest CT scan done, and well it was great. Everything is stable!!! The one spot in my lungs which showed activity on the pet scan some time ago, is actually shrinking. Because of this we decided not to follow up on a treatment plan on that.

Hope everyone is doing as best as they can,

Mario