Cindy, Sam and family
Good news with the trial however the news with the pancreas I'm sorry to hear as I'm sure you all are to as well.
On August 13,2017 you reported -
jcs2007 wrote: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.
Have you consulted a surgeon on the pancreas? How's the bleeding in the lungs?
Last edited by D.ap on Sun Sep 17, 2017 5:44 am, edited 3 times in total.
In reading of the procedure , not a lot are approved when cancer is involved ? About 20% of all cancer patients, but involves a long surgery maybe ?
Sams lungs are doing ok ?
Hugs coming your way .
Love
Debbie
Also on vit C infusions, Josh took them back in 2014 as part of a KU Med clinical trial , which the integrative oncological department was running ,studying the effects of vit in conjunction with chemo on cancer patients . Health benefits .
He had had only surgeries at that point..no chemos
The speculation is that infused vit C acts as not only an antioxidant but a chemo with cancer, and can be either or with a patients body/ cancer needs.
We were responsible for the cost of the vit C but didn't finish up the study .
Here's an article that shows the beginnings of research with vit C and some chemos as well as discussion of studies in other cancer areas and how it is unto itself is immune stimulating.
It is something you could discuss with an integrative oncologist to incorporate with treatment if it's allowed .
Cindy - in general any alternative/complimentary medicine drugs can do the following:1. Nothing (which is good if it is free or at least cheap, gives you a sense of doing something unless it prevents you from doing something meaningful). 2 Helping (has to be proven, this industry has lots of money to sponsor a normal clinical trial if they want to, if they do not do it - it is very telling). 3 Harming the patient (not a rare ocassion given the huge doses often involved and the fragile health condition of the patient it is used on - harming his liver, kidneys, interfering with the concurrent general treatments). We do not have any success stories re. alternative treatments here. I hate people offering you all types of advice in this area leaving you to feel somehow guilty, I had even marketing trolls on the general sarcoma board to tell me that I do not want to cure my own son and that I am missing the opportunity to help him. I knew it was their job and that it was a fraud but nevertheless it was really unpleasant. This is one of the ugly sides of life living with cancer - you are being attacked by the well meaning and by the scammers alike. Nothing really new here - stick to the science proven treatments, read Pubmed for the facts and studies, everything has to be proven in people not in a petri dish or tested in mice.
Dear Cindy, I am so sorry that Hurricane Irma created additional obstacles for dear Sam and your family in obtaining a new systemic treatment for him, but am grateful that the delay was relatively short and that you will now be able to move forward with the Axi/Pembro Trial on Monday. I Hope that all of your family and your Home fared well through the frightening ravages and heartbreaking destruction of Irma. Although I am not personally familiar with Vitamin C infusions to help fight ASPS, I strongly agree with Olga's very wise and knowledgeable input regarding these unproven and potentially harmful alternative/complimentary treatments. I know and understand VERY well the desperation to find a miracle treatment, and in the early years of Brittany's diagnosis and battle we ourselves pursued and had Brittany use several allegedly VERY effective alternative treatments and natural supplements including maitake mushroom extract, Immunocal, and even a bizarre treatment with a "Vibe Machine", none of which were even remotely effective in stabilizing the continued progression of her disease. I know and understand that doctors and traditional medicine unfortunately don't know everything nor do they have the answers and cure that we so desperately seek for our precious children who are suffering and courageously fighting this insidious disease, but I know too that there are many unscrupulous profit driven people and companies who will try to take advantage of our desperation by making empty promises of "guaranteed..." treatment success and cures and offering us false Hope. ANY treatment that is being considered should be well researched, thoroughly discussed with the oncologist, and have documented and verifiable data avaulable regarding treatment success specifically for ASPS patients. My VERY best wishes are with dear Sam and your family for a VERY successful, sustained, and long term response to the new Axirinib/Pembro Clinical Trial treatment. Please tell Dr. Wilky "HELLO" from me and Brittany, take care, and keep the Board updated as you are able.With more hugs, special caring thoughts, healing wishes, and continued Hope, Bonni
Thanks for the helpful advice regarding alt treatments! Sam just celebrated fighting this crazy disease for 10 years by starting the Axi/pembro study which he is tolerating well. The biggest side effect so far is fatigue. Also, it appears the bronchial embolization procedure for his largest lung met has signs of necrosis so hopefully will not cause anymore bleeding issues. Best wishes to everyone in fighting ASPS!
Thank you for your thoughtful update dear Cindy and for the shared good news that dear Sam has now begun the very promising Pembrolizumab/Axitinib Trial in Miami and is tolerating it well thus far. Congratulations are in order for Sam's 10 year survival of this imsidious disease and your ongoing faithful support throughout his courageous battle. When are Sam's Clinical Trial monitoring scans scheduled, will he receive complete chest/abdominal/pelvic, brain, and bone scans to adrquately monitor all areas of his body, and how often will he receive scans? My very best wishes, most positive thoughts, and continued Hope are with dear Sam and your family for a very successful response to his new treatment and I will be anxiously awaiting your next update when your time allows, Bonni
Bonni, Sam just had first abdom/pel/ chest CT and pet scan on Friday which will evaluate how the axi/pembro trial is doing. He has brain MRI in January too. Sam has tolerated the trial well with fatigue the biggest issue. He has a slight cough too. He is scheduled to do his 5 keytruda on Friday.
Hoping all is well with you all. Happy 2018# cure for asps!
Happy New Year 2018 dear Cindy and thank you so much for your very thoughtful update on dear Sam and his very promising Pembrolizumab/Axitinib Clinical Trial treatment. I am holding VERY tight to Hope that all of his recent monitoring scans and his upcoming brain MRI will show shrinkage/disappearance of his mets and stabilization of his disease with no new mets, and I will be anxiously awaiting your next update on the scan results when your time allows. Please tell Dr. Wilky "HELLO" from me and Brittany who had the great privilege of personally meeting her in Miami at the ASPS conference in September 2016. She and her dedicated ASPS work are truly a precious gift for all of us in the ASPS Community. In the meantime, I Hope that dear Sam, you, and your family all enjoyed a beautiful Holiday season and that the beginning of this New Year is brightened with healing Hope for all of you. Heart to heart with special caring thoughts, healing wishes, love, and continued Hope, Bonni
Happy New Year! Our recent scans show shrinkage in lung and pancreatic met. Sam is tolerating the treatment of 5mg of axi with the pembo infusion so we'll continue in track. Hoping this can be a helpful treatment for other ASPS patient. Prayers for all.
Great news !
How big is the largest tumor in Sam’s lungs?
The reason I ask is when Josh began with opdivo mid 2016, he already had a pre existing cough because of a over 5cm lung tumor. We could tell of the reduction being caused by the Opdivo working by September 2016, as the cough was reduced .
I was looking back at his scans and by January 2017, the tumor was 19mm verse 50 mm in June of 2016.
Hoping the cough will subside soon .
This was his first set of scans since beginning in Oct 2016 ?
What a wonderful way to start the New Year with this VERY good and encouraging news regarding dear Sam's successful response thus far to his Pembrolizumab/Axitinib Clinical Trial treatment. Thank you for your thoughtful update dear Cindy which provides much Hope for all of us in the ASPS Community. Sharing your great relief and happiness with happy hugs, celebratory high fives, special joy, wishes for continued treatment success, tumor shrinkage/disappearance, and stable disease, much love, and continued Hope, Bonni
Just wanted to post that sam’s 6 month scan shows continued shrinkage of lung and pancreas mets. The largest lung met went from 14mm to 9mm and pancreas decreased from 3.0 x2.7 to 2,3 x 1.1 cm. His main side effect is fatigue with some headaches and lung pain after infusion of pembro. We are so grateful to Dr. Wilky for getting him in this trial.
but didn't finish up the study .
Thank you for your thoughtful update dear Cindy which provides much Hope for all of us in the ASPS Community. Sharing your great relief and happiness with happy hugs, celebratory high fives, special joy, wishes for continued treatment success, tumor shrinkage/disappearance, and stable disease, much love, and continued Hope, Bonni