Jen from California - Dx 2009

[jenhy168]

Hi Lynette,

My onco suggested Opdivo over email to me and is away on vacation I think, so he hasn't explained in person why he chose Opdivo. Most likely my insurance will deny Opdivo since it's not approved for sarcoma. But we will appeal or try to make a case with Bristol Myers (drug company) to try to get the drug for me. So we'll see if I can even get it...
I will let you know once I talk to my onco why he suggested Opdivo, assuming I'm actually able to get the drug. (may take some time)

I don't know much about Opdivo except for what I've read on the internet. Doesn't seem like the side effects are TOO bad...hopefully I don't lose a lot of hair! My hair has finally grown back after stopping votrient for over a year.

Happy 4th of July everyone. I'm hoping to see the Disneyland fireworks for free from outside the park. Disneyland goes all out for 4th of July.

[Jorge]

Happy July 4th to everyone!
Enjoy the celebration, have fun

[D.ap]

Hi Jen
I found another very informative link on the findings of clinical trials from NIH
on Opdivo

http://dailymed.nlm.nih.gov/dailymed/dr ... 0a4ae4e394

[jenhy168]

Hi everyone~

So apparently I got approved for Opdivo and will be starting my first treatment on Tuesday...We'll see how it is...

Thanks for the link on Opdivo!

Jen

[jenhy168]

I also sent in my scans and info to Dr. Rolle this week. Hopefully I hear back from him within 2-3 weeks.

[Bonni Hess]

Dear Jen, Thank you for your thoughtful update with the good news about the approval for you to receive Opdivo and begin taking it on Tuesday. I am not personally familiar with Opdivo and any ASPS patients who have been treated with it, but am holding very tight to Hope that it will be very successful for you with minimal negative side effects. Please keep us updated on your Opdivo experience and results as you are able, and know that my most positive thoughts and very best wishes are with you for treatment success that stabilizes the progression of your disease and shrinks and destroys your tumors. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Hi Jen

As Bonni has so gracious stated I second the hope along with prayers for a successful treatment and your over all wellness
What scans will be performed and the treatments will be given how often ?

Remind me how long you were able to be on Sunitinib before progression ?
I hope that Dr Rolle responds soon

Our thoughts and prayers always
Love
Debbie and family

[jenhy168]

Thanks Bonni and Debbie for ur kind thoughts.

I will be the first asps patient under the care of my Ucla onco to try opdivo (nivolumab), and probably also the first asps patient at Ucla in general to take opdivo. It's an hour long infusion every 2 weeks. Pneumonitis side effects is probable for me, and I'm already coughing a lot as it is. I have lots of coughing fits because I feel like my lungs or windpipe are itchy and I can't breathe in deeply. Anyone else here suffer from this?

I was on sutent / sunitinib from November 2013 - July 2015. Progression started occurring around May 2015.

After dr rolle looks at my info and scans, how does the process work? He contacts me and lets me know whether I'm a candidate or not? And if I want to go forward, would I need to make a trip to Germany just for the consult then go back to Germany again for the surgery? Or is the consult via overseas communication?

Did anyone who had surgery with dr rolle have complications during or after the surgery? Do they feel like the after effects of the surgery makes their daily quality of life worse? (Such as cough, pain, etc)...

Thanks all~
Best,
Jen

[ChloeJ]

Hi Jen

I am replying in response to your coughing fits. I've had coughing fits since March this year. Initially we just thought chest infection but sadly not, my oncologist says I am now symptomatic from the tumours in my lungs. Some have grown around my trachea so are pressing on that which he thinks is causing cough.

In terms of coping with it I find I have to pace myself, walk slowly so I don't get out of breath and start coughing, I can't really talk too long as that always brings on a coughing fit. I find cool fresh air helps and at night I have codeine linctus which helps to suppress the cough a bit. If it's really bad or I'm in pain from strain of coughing I take oramorph which helps. Perhaps you could try to see if they help.

I hope you have success on the new trial.

Best wishes

Chloe

[Olga]

When the lung mets are close to the trachea and irritating it, they are symptomatic and can be cryoablated and covered by the insurance (I think). Dr.Littrup in Providence or Dr.Aoun in Detroit both can cryoablate the mets adjacent to the wind pipe, Ivan just had a cryo in that location and it went well.
Re.Dr.Rolle surgery scheduling. Have you communicated with him before sending the scans? If you had, he will review the scans and let you know by the e-mail if he is able to help you. Then you just get a date for the surgery and arrive 2 days before of it (unless your flight arrives early in the morning then you can arrive 1 day before for the check in, functional testing and pre-op measurements and instructions). Then you have to plan to stay there for about 2 weeks post the surgery. Ivan had 1 major complication after 4 Dr.Rolle's surgeries. It takes about a month to heal and about 6 months to completely recover. There might be a problem with the pulmonary fibrosis you got after the other treatments, I suppose that you told to Dr.Rolle about it.

[jenhy168]

Hi Chloe, Thank you so much for your input and advice. I experience the same thing as you and I will definitely ask my onco about codeine and oramorph.

Olga, I have insurance through a Medicare provider so I don't think they cover out of network surgeries. Do you know what the price range of the cryoablation with Dr. Littrup or Dr. Aoun? $10,000+?

Re. Dr. Rolle - Yes I emailed him before, and I emailed him when I mailed the package so that he knows to look out for the package. I hope to hear from him soon.

Tomorrow I am going to get my 1st treatment of Opdivo.

~Jen

[Olga]

There is a very good interventional radiologist in LA - Dr.Suh. I am not sure if he does cryo but at least he might be a referring for out of network doctor. The cost of the cryo is about $12K with Dr.Aoun in Detroit and $20 K with Dr.Littrup in Providence and both of them will be working with your insurance trying to get the procedure covered by them. I have not heard any of US patients paying full price for it. Both hospitals - in Providence and Detroit - will significantly reduce the payment in the unlikely case the insurance is no paying, unfortunately it only applies to US patients. We, being from Canada, are paying the full price for Ivan's treatments.

[jenhy168]

Hi Olga, thank you for the reference. I appreciate your help!

[D.ap]

Hi Jen

Lots of hugs coming your way today !

Love
Debbie

[jenhy168]

Hi all,

So I have a nodule in my left lung near my heart that is about 40mm, and I think it's been making me cough a lot. I asked the radiation oncologist if I should get cryo for this lesion and he said due to the location of the lesion, it's not safe to do cryo. He suggested traditional radiation (15 treatments).

Isn't radiation not effective for sarcoma lesions?

Is it worth trying to get a consult from one of your recommended cryo docs?

Thanks~
Jen