Jen from California - Dx 2009

[Bonni Hess]

Dear Jen,
It was so good to hear from you again. All of us on this Board share your deep sorrow for dear Amanda's devastating loss and she is deeply missed. She truly cared about everyone in the ASPS Community and was a source of great support, encouragement, and inspiration for everyone who shares this difficult battle with this insidious disease which has now tragically taken her precious Life. Her bright, positive, invincible, and courageous spirit will continue to lead us.
I am so grateful that your November brain MRI was clear especially since you were having concerning headaches. Hopefully those headaches have now dissipated and resolved. I am sorry for the increase in the size of your lung mets, but am grateful that it was only a slight amount of growth with at least reportedly no new mets. You mentioned that the increase was seen on your March chest CT scan, and I am wondering if you only had a chest CT, or if it was a chest/abdominal/pelvic CT which should be done to monitor all of those areas for possible mets. If it was not a chest/abdominal/pelvic CT, I urge you to schedule an abdominal/pelvic CT or MRI prior to your June CT to ensure that there are no abdominal/pelvic mets because often if there is growth in the lung mets there may also be disease progression in other areas, and even if there is no lung met growth, mets can develop in other areas which thus necessitates adequate, regular, and vigilant scanning of all areas of the body, and not just the chest.
Regarding your question about PDL-1, I am personally aware of one ASPS patient, 15 year old Nathalie who is being treated with it. Because of Nathalie's age she was inelgible for the PDL-1 Trial, but her family launched a massive national media campaign to appeal to the pharmaceutical company for a pediatric exception for Nathalie to participate in the PDL-1 Trial which was finally granted, so you may be able to request a Compassionate Use Exception to be accepted into the Pittsburgh Trial if ASPS is not included in the disease enrollment protocol. I was in personal contact with Nathalie's father Nathan and have repeatedly urged him to post and participate on the CureASPS Board to share information about Nathalie and her PDL-1 treatment experience, but unfortunately and inexplicably he has not done so. He and Nathalie both have Facebook sites and you could possibly try to contact Nathan or Nathalie through Facebook with a private message to try to find out the results of Nathalie's PDL-1 treatment thus far. Hopefully you will have more success in receiving a response than I have! In the meantime, I Hope that you are feeling good and enjoying a beautiful California Springtime. Take care Jen and keep in touch as you are able.
With hugs, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Jorge]

Hi Jen,
I'm glad to hear your good news about the brain scan.
You said you're taking Sutent, 25mg per day. So that's 2 capsules? That's not the standard dosage. Is that any special reason that your doctor prescribe this dosage?

Prof. Rolle's email address is now: Rolle, Axel <Prof.Rolle@Fachkrankenhaus-Coswig.de> and his secretary's: Arlt@fachkrankenhaus-coswig.de

Best wishes,
Lynette

[jenhy168]

Hi Lynette,

Regarding my Sutent dosage, I take 2 pills of 12.5mg a day ( or 25 per day) because I tolerate this dosage better. I started with 3 pills a day but the side effects were a bit too strong for me considering I'm only 5'4 & 105lbs.

Thank you for Dr. Rolle's email address. I am getting my next scans in a week, and plan to send Dr. Rolle my scans after I see my doctor with the scan results.

Best,
Jen

[jenhy168]

Also, has anyone taken Crizotinib?

[D.ap]

Hi Jen
We would love to hear of the lung scan results and what is decided after the review.
Regarding your question on Crizotinib
Type the word Crizotinib in the search box and there will appear pages of posts discussing the Crizotinib topic

Is the sutent unable to stabilize the tumors?
Remind us how long you've been on sutent

I've been thinking of you a lot lately
Good to hear from you

Much love
Debbie

[jenhy168]

Hi Debbie

I did search Crizotinib on the forum and it seems like no one has really tried it.

I've been on Sutent since September 2013, so it's been about 21 months. The last scan in March 2015 showed a tiny amount of growth in the size of nodules.

I will keep you all updated.
~Jen

[jenhy168]

Just wondering...how many people from this forum has had lung laser procedure by Dr Rolle?

Josh, Ivan, Brittany?, Kevin...anyone else?

[Bonni Hess]

Dear Jen, Just a quick note for now and more later but wanted to let you know that Brittany never had lung laser resection with Dr. Rolle. She has had 2 lung Cryoablations with Dr. Littrup and one lung RFA in Pittsburgh. Regarding your question about Criizotinib, I am personally aware of one patient on this Board, 'K' E., who was treated with Crizotinib but unfortunately it was unsuccessful in stabilizing the progression of her disease and she tragically lost her courageous battle a year ago.My most positive thoughts and very best wishes are with you for good results from your next week's scans and I will be anxiously awaiting your update. With special caring thoughts, healing wishes, and continued Hope, Bonni

[Olga]

Re.Laser assisted surgery patients - add Tom and George plus some people that are not here anymore - Charity, 'K'.

[mikko]

You can also add my son Jussi (Dx 2008) who has had 4 laser assisted surgeries and one RFA by Dr. Rolle.

[jenhy168]

Thanks all.

So I got my Chest CT Scan results and looks like my nodules increased slightly in size, so I'm going to stop Sutent. My UCLA onco suggested Nivolumab (opdivo), which I think is an infusion given every 2 weeks.

Anyone have any experience with Nivolumab?

Hope everyone is enjoying their Summer. It's been very warm in Cali.

~Jen

[D.ap]

Morning Jen

Good to hear from you
I sure am sorry to hear of tumor progression
If you look at Lynetts and George's post we were just discussing the melanoma FDA approved drug
Hot summer here.
Love
Debbie

[jenhy168]

Hi Debbie,

Yes, I just saw George's postings. It seems like no one here has tried it yet...

Thx,

Jen

[Olga]

Jen, hi, I just found an article re. PD-1 and PD-L1 targeting drugs side effects profile and management, posted it in
Board index ‹ Systemic Treatment ‹ Side effects of systemic treatments
here:
http://www.cureasps.org/forum/viewtopic.php?f=46&t=1102

we have someone participating in a trial for one of these drugs (there are several from different big pharma co in trials now) but they do not want to share an information, unfortunately.

[Jorge]

Hi Jen,
Now there are 2 PD1 antibody is approved by FDA--Keytruda and Opdivo. Does your oncologist explain in details why he suggest Opdivo? I know there are clinical trials of Sacomar patient using some PD1 antibody since last year, but can't find any data of the clinical result. Wondering is your onco reads the result somewhere and make the suggestion to you...

I wish we would have the chance to take Opdivo The side effects is much less than Chemo and some TKI, the response rate looks promising...

Good luck,
Lynette