Nhi from NY - Dx June 2016

[Ivan]

This is a tricky situation. Please find out the approximate date of growth of this met. I would contact Dr Littrup as a backup. If he says yes than perhaps we can think about it. If he says no, there's nothing to think about.

[Ivan]

Also, off label is way better than trial. No need for unnecessary biopsies etc. More flexibility with treatment without being taken off etc.

[ntran727]

Thanks for the advice Ivan. I too also think no need for more procedures if the immunotherapy works to shrink the mets. Also agreed that it's better than being on a clinical trial especially with us moving to California in the fall. I think I will wait to see how I respond to treatment first and then contact Dr. Littrup if needed in the future. I will keep you updated with how long the L4 met has been there. Currently, I do not have any pain at all. Have already started on my new diet and exercise. Hopefully Keytruda won't be too terrible in terms of side effects.

[D.ap]

Hello Nhi,

All prior suggestions are truly good advice .:)
When talking with your team also discuss
1) pseudo progression
2) thyroid defincey

1)The spine met could possibly grow and I would hope if it did there is room to not cause pain and or pressure issues . The pseudo progression

2) with icis we’ve had great success NOT treating low thyroid .
http://www.cureasps.org/forum/viewtopic ... it=Thyroid

Olga’s post on diet to aid lowering thyroid

http://www.cureasps.org/forum/viewtopic ... apy#p11592

Also the abscopal affect along with the ici
Hope to hear of success with all you pursue !
Love

[Bonni Hess]

Thank you for the updated information Nhi. I am perplexed as to why a biopsy was done of the manubrium met since with the well known nature of this disease to metastasize, an invasive biopsy to confirm that it is ASPS seems like an unnecessary procedure that risks dissemination of the tumor cells through the biopsy needle track. We have personally always refused biopsies of Brittany's innumerous new mets for that reason, preferring instead to address treatment of the undiagnosed lesion such as the one that appeared in her breast and was subsequently successfully resected with a post-op confirmation of ASPS. Additionally, I agree that there is no definitive way to determine if the Sutent dosage reduction contributed to your disease progression, but I would be more inclined to think that your body developed resistance to the Sutent and subsequent disease progression which has been my observation of every patient's Sutent treatment experience who I am personally aware of. To my knowledge, Sutent has never been successful in providing dramatic met shrinkage or sustained or long term disease stability for more than 6 months to a year for any of the ASPS patients who I have closely followed, contrary to what your oncologist had told you when he advocated Sutent treatment for you. I think that the very promising new ICI treatments like Keytruda, Opdivo, and Tecentriq are better treatment options than Sutent based on their thus far very successful results for ASPS patients, and I think that systemic treatment with Keytruda is a good treatment choice for you. While I think that it may be a good idea to postpone any ablation or other treatment until the effectiveness of the Keytruda in shrinking/destroying your bone mets can be determined, I agree with Ivan that it is important for you to determine a rate of growth of your relatively large 1.9 centimeter L-4 met, and also to at least consult with Dr.Littrup before beginning your Keytruda treatment so that you know the urgency of treating the mets, and have other possible treatments in place if needed. In the meantime, my very best wishes and most positive thoughts are with you for good news of no brain mets from your upcoming scheduled brain MRI. With more hugs, special caring thoughts, healing wishes, and continued Hope. Bonni

[ntran727]

Hi Bonni,

Because of the delayed scheduling with the MRI abd/pelvis, I think we jumped the gun a little bit to biopsy the manubrium met as we thought it was an isolated lesion and didn't expect to find any abnormalities in the abd/pelvis. Little did I know, I had more bone mets. Sucks that we did an unnecessary procedure that could lead to more spread, but nothing I can do about it now. Just have to look forward and tackle the next bump in the road.

[Bonni Hess]

Thank you for your explanation regarding your manubrium met biopsy dear Nhi. Frustratingly, many doctors automatically order biopsies for their ASPS patients which seems an unnecessary procedure given the well known nature of this disease to metastasize to many areas of the body, and the almost certain result of the biopsy to confirm that the biopsied lesion is ASPS. Unfortunately most patients unquestioningly allow the biopsy. However, as you indicated, there is no reason to dwell on what was already done, but rather to positively focus on moving forward with your courageous battle. Hopefully you won't undergo any further unnecessary biopsies. With deepest caring, healing wishes, and continued Hope, Bonni

[ntran727]

Hi everyone,

Brain MRI was clear thank goodness!
My oncologist is working on getting me Keytruda (we are getting it for free from Merck) and I will be starting the first treatment this week.
Babies are doing well, only 6 weeks left to go until they are born!
I started back on my organic diet, pure water, did 2 yoga sessions and 3 gym sessions last week and feeling great! I am able to exercise without pain and eat much better this time around because I am not getting any side effects from Sutent at this point. I am determined to be as healthy as I can while on treatment because of how important the immune system is in fighting this cancer.
I will keep you all updated on side effects of Keytruda once I start it.

[Bonni Hess]

Dear Nhi, I am sharing rhe great relief of your clear brain MRI results with greatest happiness, and am very grateful that you will be starting your Keytruda treatment this week to try to stabilize your disease progression and shrink/destroy your existing mets. I Hope that you tolerate the Keytruda well as you prepare for the joyous arrival of your precious little twins. With happy hugs, special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

Hello Nhi
Excellent news all the way around!
So exciting that the babies are due in 6 weeks .
Sending you love and hugs .


Will you be on an every 3 week regiment ?
Have you all discussed doseage ?
Love

[ntran727]

I will be getting 200mg every 3 weeks. He said that is how they are giving it now, no longer weight based unless it’s pediatric dosing. At the infusion site now, waiting to get it. Saw my oncologist earlier. He said repeat scans after 3rd infusion. I will start a thread on keytruda later to post about side effects etc. I stopped the sutent 2 days ago. Hoping for the best!

[Olga]

Good luck with the side effects. The max exposure to Keytruda was determined to be at the 72 hours post infusion. The side effects range from the immediate acute allergic type reaction at the infusion time and numerous after.
there are numerous publications re. side effects this one is basics
http://themelanomanurse.org/wp-content/ ... pembro.pdf

[D.ap]

Nhi
All our love and best wishes for success!

At your 9week scan, is there consideration and thoughts on the possiblity of pseudo progression ?

[D.ap]

Morning Nhi
Is the L4 spine tumor located anterior to your spine ?
Also the L5?

[ntran727]

Hi Deb,

I am sure my oncologist is aware of the possibility of pseudo progression and I would be sure to discuss that with him if he wasn’t aware. The L4 spine met is on the vertebral body to the right side. I’m not sure what you mean by anterior to the spine. The vertebra has 3 parts, the vertebral body (anterior), the spinous process and arch (posterior). They did not mention where the L5 one is and didn’t size it. I wasn’t able to visualize it so it must be very small.

I still haven’t started a thread on Keytruda, but I must say that I feel extra great being off the Sutent for 6 days now. My hands and feet feel so great without pain and I’ve had so much more energy with no pain when exerting myself. I used to always end up with rib pains if I did too much strenuous activities. I forgot what it was like to be normal. I guess I have zero side effects from keytruda so far and was able to go to yoga a few hours after my infusion. I’ve been exercising about 5 days a week, 3 days gym and 2 days yoga about. I’m also working less (meaning “normal” hours) and not picking up extra shifts which allows me to take care of myself a lot better :)