Sam from Florida - Dx 2007

[jcs2007]

Thanks for the quick response because they discharge him not knowing if the bleeding had truly stopped and now we are back at the hospital because he started coughing up blood. The treatment didn't sound correct. The largest lung lesion is in the right hylium ( right hylar lymph node 3.9x4.1cm). And pancreas is now 2.8x3.5cm. I asked about ablation but they said it wasn't recommended since bleeding had stopped and to get him back to Miami asap.waiting on the doctor to come by.

[D.ap]

Hi Cindy
I was looking for my post for when Josh had a bout with Hemoptysis but I couldn't locate it.

I hope you are getting some answers today
This is a really informative link on it I found .


http://www.webmd.com/lung/coughing-up-blood

[Olga]

Is Sam already enrolled in a clinical trial in Miami?

[jcs2007]

Sam is going to have the bronchial arterial embolization. We had plans to start chemical trial next week but not sure now what the plan will be. They couldn't do ablation due to location in the bronchospy? Thanks for all the info

[Olga]

The embolization sounds about right, I hope the doctor is skilled in it. The cryoablation would be the better choice if it is done by someone like Dr.Littrup or Dr.Aoun - very experienced in doing it in a challenging location, otherwise it is considered to be not possible in a location like this.
I did not get about the trail - wasn't Sam considered to be enrolled into the ASPS Keytruda+ clinical trial in Miami? You posted something earlier in a year.

[jcs2007]

Yes, they said it was a tricky location since they could not see it in first bronchospy procedure. Was going to do that axi pembro trial but Dr. Will thought Alotinib trial would be a good fit since he could go once month verses weekly.

[Olga]

I think the schedule should not be the main consideration for choosing the trial, it is less important than choosing the one that shows some preliminary activity as we get an inside info from our patients not yet reported publicly. There are few interesting trials now that you should consider, the one at the MDACC looks interesting - they are actively enrolling ASPS patients after some interesting results they see in our patients, and the one for Keytruda looks ok too. What was Dr. rationale for recommending Alotinib besides of the schedule?

http://www.cureasps.org/forum/viewtopic.php?f=88&t=1399
also trials with atezolizumab are showing preliminary activity in ASPS.
The trials are only trials, they are not treatments and the end net benefit might be different from the interim results, so it is always right to use the local treatments (surgeries, ablations) before going on a trial, if possible.

[D.ap]

Dated Nov 2016

Hello, just wanted to post that Sam needs to heal from his brain surgery prior to starting any new treatment. We will have chest, abdomen, pelvic ct scan with contrast and a bone scan to evaluate for any changes especially in the lung mets and small lesion on the tail of the pancreas at the end of December. If needed, Sam may participate in the axi/pem trial in Miami. I appreciate all the information given on the board regarding scans, surgery, and systemic treatments since it's difficult to know what direction is best. Best wishes and happy thanksgiving to alll!! Cindy

Cindy
Sam's been off ARQ 197 since 2009-2016, correct ?

The pancrease was discovered in November? Is there an adrenal gland involved as well?
How much have these grown since November Cindy ?

Olga has graciously supplied you with some good trials and if the rate of growth is significant, I wouldn't put my faith in the Alotinib .
Embolization then Ablation and or removal then immune therapy UNLESS the doctor could give some great stats on reduction to patients taking alotinib ?
Thoughts and prayers to you all.

[D.ap]

With opdivo, what we accomplished
Lung and pancreas reduction

http://cureasps.org/forum/viewtopic.php ... 1297#p9919

[D.ap]

Here's the Atezolizumab trial link as well
Kathy and Tom reported good results on facebook to Toms spinal tumor after being on Atezolizumab since June of this year, I believe
This is the adolescent and ped trial
https://clinicaltrials.gov/ct2/show/study/NCT02541604

[jcs2007]

Thanks for the information regarding the surgeries and systemic treatments. We are holding off on the Alotinib trial due to sam's recent bleeding issue but plan to discuss doing the Axi/Pembro treatment instead. We will be traveling to Miami to discuss treatment options but due to his recent increase in tumor growth in the lungs and the pancreas, We need to do something. We will discuss the surgery and trial meds. Deb, I noticed the one trial was even in Orlando which would be super convenient. I asked about Opdivo(since I knew Josh was on it) but Dr. Wilky mentioned having to get special insurance clearance which could be time consuming. Also, the Bronchial Arterial Embolization procedure went well and he is on cough and pain meds.
Thanks again!

[D.ap]

Cindy
Thanks for the update .
I can only imagine how over whelming everything must feel however you are doing a great job!
I agree with Dr Wilky.. time is of the essense .
Gods speed and hugs.
Love
The Pearson's

[Bonni Hess]

Dear Cindy, Having been away from the computer much of the summer due to traveling and boating, I am finally getting a chance to catch up on the Board posts. My heart breaks for all of the challenges and disease progression that dear Sam has been going through following his previous long term ARQ-197 treatment success and disease stability, but I am grateful that his new mets are being treated and that you have some promising new systemic treatment options to pursue .It has been almost a month since your last post, so I Hope that no news is good news and that you have been busy beginning a new systemic treatment for dear Sam. I am holding VERY tight to Hope that you have found a new treatment that will be VERY successful in stabilizing the progression of Sam's increasingly challenging disease and that will shrink/destroy his mets. Take care dear Cindy, keep in touch as you are able, and know that dear Sam, you, and your family are always held very close in my heart and thoughts. With special hugs, deepest caring, healing wishes, and continued Hope, Bonni

[jcs2007]

Hey, Sam's was to start the axi/pembro trial this past Monday but hurricane Irma interfered with those plans. However, we have a new appointment to get started on the trial protocol this Monday so I'll update his experience. The disease progression in the lungs and tail of pancreas changed our treatment plan from just surgery to systemic. Praying for everyone on this journey.
Also, does anyone have any info on lV vitamin c treatment? It's amazing how many people share different ideas from vit c, turmeric, and apricot seeds...

[arojussi]

Glad to hear about the trial. Immunothearpy has indeed worked miracles with many advanced asps patients. But it is still very hard to see difference between pseudoprogression and true progression. Immunotherapy for some reason seems to work better in advanged disease where immune system has something to fight against. Good luck.

One last advice: if it has word alternative medicine in it then it is more likely to shorten your lifetime than prolong it.