Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I repost this from his personal updates link http://www.cureasps.org/forum/viewtopic ... 2&start=45

He started a trial NCT02815995 (the combination of durvalumab (PD-L1 block) and tremelimumab (CTLA-4 block)) on 24 of September 2016. As of now, he had 6 month check up with the mixed result and it looked as a growth but his oncologist Dr. Benjamin argued that size on the scans looked as an increase is actually a pseudo-progression due to a local inflammation, and asked the trial would allow to give Mario the 6 weeks off and re-scan. They finally allowed too and now it is confirmed that there is a significant shrinkage in all lung mets, he was allowed back to the trial and continues the treatment!
Mario, you can update the trial news here too.

Mario
Hello . I was recently was reading an article on immune response in conjunction with Tkis and in general ,after ablative treatments and I had previously ask if you had had a liver ablation in 2015-2016 years ?
You took cometriq for 2 years ?

http://www.cureasps.org/forum/viewtopic.php?f=66&t=905
You began the immune trial in September 2016?

The only remaining tumors are a 2cm and smaller in lungs?

http://www.cureasps.org/forum/viewtopic ... t=15#p9606
How are you doing ?

Dear Everyone:

I recently had my 2 month check up on the first week of July, everyone on the Sarcoma clinic was very happy with the results. Everything has shrunk some with, some nodules having a considerable shrinkage with other ones just a little. Also, the color and way that my lung nodules look is way better on the scan. I don't know how to explain this, basically they do not look as dark as they used to and this is supposed to be better. Also, on my liver spot it has gone down considerable and its less vascular.

I have now gain a lot of weight which is very good I am a healthy 160 pounds now. I will now try to start going to the gym to see if I can gain some muscle too. I will try my best but I doubt I could do much with my CVC. I have been warn on doing weights and at the same time having a central venous Catheter. I am not supposed to do too much.

This last couple of weeks I have been hit with a lot of fatigue and this seems to be an issue. But so far I just take a nap here and there.

Something else that I have notice is that the only thing that seems to be the same is my veins. For some reason my veins are really bad, I know that I have been battling this illness for 10 years now and probably that has something to do with this. But my Central line wasn't working once and they had to put a IV line on me. It took forever to find a vein and the vein always explodes or something happens to it. This is something alarming to me, as I hate needles now. This is the reason I have my CVC but it just makes me wonder if I didn't have it what would happen.

Overall I am doing good, I am doing so good that this upcoming visit to MD anderson. I am going alone and my dad is staying working. That in itself is a great progress from a year ago. I am bless and happy to be able to smile and laugh once again.

I will try to post updates to see how I am doing.

Debbie, no I have not had a liver ablation, The spot that I have is supposed to be in a part where is feasible to have actual normal surgery since its away from the draining and veiny part of the liver. We will see what happens in the future. In regards to the TKI's, yes I had cometriq for a while and I have pretty much been on every kind of TKI on the last past ten years. Also, I believe that yes most tumors are 2cm or smaller, I believe the liver one is about that 2cm now or a little bit less and the lungs are doing good. Yes I began the Immuno therapy on September of last year.

I will try to update on September when I get scan again and see how I am doing.

God Bless everyone;

Mario

PS does anyone know what to do when you develop a rash due to the dressing on your CVC? let me know if anyone has any pointers on that, I am currently battling a rash in my clavicle area. I have change the type of dressing and its better but I still have a little bit of rash.

Hello Mario

What excellent news of shrinkeage AND weight gain !


August 2016 your post

Debbie my weight is 128 but it goes up and down between 128 to 132. My height is 5'6.

With your question on vein issues, do you drink plenty of water ? I'd imagine that the amount of 10 year meds have taken their toll to a degree .
Do you have metabolic blood test to look at say your calcium levels ? Cometriq is known for wound issues and I bet you've experienced some defiency of lots of vitamins.
Defiency of say vit k and calcium can cause bleeding issues . It seems you've been mentioning vein issues for over a year ?

http://blogs.webmd.com/integrative-medi ... ssels.html

Along with back pain?
https://goqii.com/blog/are-you-sufferin ... itamin-d3/
The rash stays there all the time or only shortly after a treatment ?
It sounds like you have a chest port ?

Scans are every 2 months ?

Mario
Found a really good paper that discusses what's referred as osteoclasts inhibition , as the result of targeted therapies effects on bones.
A class of drugs known to inhibit bone growth and potientially weaken bones ,is my limited medical understanding ?
Cabozantinib( cometriq ) and other VEGF TKIs , are mentioned on page 8 of the article .

RET is
associated with hyperparathyroidism occurring in 10–30%
of cases after the third decade of life. It is thought that
stimulus to parathyroid cell proliferation in MEN2A is
related to the expression of the mutant RET protein in
parathyroid tissue (Pausova et al. 1996).

http://www.cureasps.org/forum/viewtopic.php?f=2&t=1418

It suggest that patients who are on TKIs for long use should always be checked for calcium issues as well as other tki induced deficiencies: hyperparathyroidism .
Calcium levels and vit K testing , in reading articles, are not routinely ordered by doctors ? And parathyroidisium can be asymtomatic ?

Did yours check your calcium levels ?

In looking back on your posts over the last year ,
especially your feb 2017, symtoms you list sound of a parathyroid possible issue?


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

Website to parathyroid -

https://www.cedars-sinai.edu/Patients/H ... sease.aspx





You may already be aware of this but I though I'd share any way.
Good night

Hi Everyone:

I finally finish my year of treatment on the trial and my last scan showed continue shrinking on all spots. The only difference is that the size only decrease by a few mm instead of the huge change that we have been seeing. I am doing really good health wise. I have gain so much weight that now I probably need to go on a diet!!!!!

I guess that now is a waiting game, I will get my 3 months check up on the 1st of February of 2019. We will see what happens then. I hope that we can see continue improvement of my mets.

I will also be getting my brain MRI on January, Echo, and bone scan.

I hope everyone is doing the best they can, and will be praying for everyone.

Mario Arevalo

Mario
Excellent news with reduction AND weight gain !
Josh too
Here’s to continued good news!

Love (and prayers for all )

Debbie

Dear Mario, It was so good to hear from you with the VERY good and encouraging news of your continued successful response with disease stability and met shrinkage on your Immunotherapy Durvalumab and Tremeliumab Clinical Trial drugs. When your time allows could you please explain why your Trial participation is now ending after a year of treatment? Also, what is the current status of the location and size of your remaining mets? I am so grateful for your weight gain, and Hope that you are feeling good and regaining strength and energy. I Hope too that despite your discontinuation of the Trial drugs you will have continued disease stability and met shrinkage/disappearance with no rebound. I am holding VERY tight to Hope for continued good news results from your January and February scans, and will be anxiously awaiting your next update. In the meantime, eat well, celebrate, and be happy as you enjoy a wonderful holiday season and coming New Year filled with healing Hope. Sharing the great joy of your encouraging treatment success with greatest happiness, happy celebration, special caring, love, and continued Hope, Bonni

Dear Bonnie:

The way the trial is set up in Md Anderson is like this, you get the combination of drugs I believe for the first 4 or 3 months and then only Medi. Which is the Durvalumab. For a total of 12 months a year, once you finish your 12 cycle they stop giving you the drug and you are put on surveillance. If there is disease progression then they will go ahead and give you another year of treatment. This is how the trial is set up, but there is a lot of talk about whether there should be a stop and surveillance time if the drug is working, why not just keep giving the treatment?

I think Dr. Benjamin wants to see what happens with me, his belief is that there will still be stability or improvement on my condition even off the drug. There was also a question of whether surgery should be done to the lungs now that most spots are way smaller. The issue with that as always is how much lung tissue will I loose and whether its even possible due to the locations of the mets. Dr. Benjamin has asked the Sarcoma Thoracic team to look at my scans and I will know on February what they think, but I don't think surgery its possible. Maybe the laser assisted surgery in Germany would be a possibility now but sadly I do not have the funds to make such a trip twice.

Like I said its a waiting game now, and quite frankly its stressing me out some, because of the supposedly rapid growth some trial members in Canada had while off the drug. I haven't talk to them but I believe that I read some stuff in the asps facebook page. My understanding is that, the trial in Canada was set up the same way. They got the drugs for a year and then they were put in surveillance. If the Asps grew they were given another year of treatment. My question would be, did the drug not work anymore? was there resistance now to MEDI and TREMI?

We will see how it goes Bonni, I really hope and pray that the shrinking continues and I can try to retake my life back from all of this. Its been 10 years now, that I have been battling this illness and because I have been in constant systematic treatment. I haven't been able to study or find a career. I am super ready to be able to either go back to school or find a good career\job.

Hope your family is doing good Bonni take care;

Mario Arevalo

Hello again dear Mario and thank you for the thoughtful additional information regarding your Trial. I am sorry for the stress that your discontinuation of the Trial drugs is causing you. It is definitely a dilemma to know if one should risk going off of a drug that has provided disease stability and tumor shrinkage given the risk of possible rebound and aggressive disease progression if/when the drug is discontinued, but apparently you have no choice with the protocol and design of your Clinical Trial. When we asked Brittany's Clinical Trial oncologist if Brittany could be considered cancer free after her 8 and a half years of disease stability and no new tumors since beginning her Cediranib treatment, he said "probably macroscopically but not microscopically", so the indication to us is that she unfortunately cannot discontinue taking the Cediranib without risk of disease progression, and that is not a risk we are willing to take at this time because it would be like playing Russian Roulette with her precious Life, although it would be SO wonderful if Brittany could be free of the chronic debilitating side effects of the Cediranib. I wish there was some definitive way to determine if the drug could be discontinued without risking disease progression, but like so many things with this poorly understood disease, there remain more questions than answers. I share your and Dr. Benjamin's great Hope that your disease stability and met shrinkage will continue despite your being off of the drug, and I understand VERY well your wanting to be able to move forward with your Life and career after your 10 long years of courageously fighting this insidious disease. Hopefully the New Year will bring you continued disease stability and happy, healthy, bright new beginnings in your young Life. Regarding your lung mets, is Cryoablation a possible treatment option for some of the largest most dangerously located mets, and then Hopefully the remaining ones will continue to shrink/disappear? I am grateful that Dr. Benjamin is continuing to closely monitor and manage your disease dear Mario and that he is such a good advocate for you. Take care, feel the embrace of my special hugs, have a beautiful and blessed Holiday season, and keep in touch as you are able. With caring thoughts, healing wishes, much love, and continued Hope, Bonni

Hello Mario

Looking forward to an update soon.
Love