Jen from California - Dx 2009

[jenhy168]

some reading..

http://ascopubs.org/doi/abs/10.1200/JCO ... uppl.11005
Conclusions: Anlotinib is effective to many pathological types of soft tissue sarcoma, particularly to ASPS and SS. Overall PFR12w reached 57.23%. Meanwhile, Anlotinib is well tolerated, while pneumothorax needs to be noticed. A randomized, controlled clinical trial is ongoing.

[Bonni Hess]

Hello again dear Jen and thank you for the additional information and links regarding the Anlotinib Trial. It is very encouraging that ASPS is the main targeted disease and that the Trial will follow Phase 3 protocol with all of the ASPS patients receiving the Anlotinib drug instead of being randomized 2/1 to receive Dacarbazine as is being done with the two other types of Sarcoma ( Leiomyosarcoma and Synovial Sarcoma) included in the study. It is interesting that this Trial is also being conducted at the University of Miami with ASPS specialist Dr. Breelyn Wilky as the principal investigator. I will be closely following the Trial results, and holding VERY tight to Hope that it proves to be a VERY successful new treatment for ASPS. My VERY best wishes and MOST positive thoughts are with you for your acceptance into the Trial following all of your qualifying tests, and if you are eligible to participate, a VERY successful treatment response dear Jen. Heart to heart with deepest caring, healing wishes, much love, and continued Hope, Bonni

[jenhy168]

Thank you so much Bonni

[D.ap]

Hi Jen
When you get a moment , please let us know how you are doing with Anlotinib.

Thinking of you
Love
Debbie

[Bonni Hess]

Dear Jen, Yesterday I read a post on rhe ASPS Facebook site from a recently diagnosed ASPS patient named Emily in Michigan that after two 21 day cycles of Anlotinib treatment she seems to be having a very successful response thus far with shrinkage and disappearance of some of her lung mets and almost no side effects. Hopefully you are having a similarly successful response to your new Anlotinib treatment. I will be anxiously awaiting your next update when your time and the situation allow, and Hope that Emily will post information about her Anlotinob experience and results on this CureASPS Board as I have encouraged her to do. With special caring thoughts, healing wishes, hugs, love, and continued Hope, Bonni

[jenhy168]

Hi Bonni, Thanks for the update. So far i've been on the trial at the 4 week mark. The process is 2 weeks on drug (1pill/day), 1 week off break. Then another 2 weeks on drug, 1 week break then follow up CT scans to see progress). I'll be getting CT scans for chest & abdomen pelvis on Feb 7...so will see how my results are then. Hopefully this drug works.

So far my side effects have been the hand/foot syndrome, but only the soles of my feet are affected. Super painful to walk around. I'm also pretty tired but that's pretty much it for now for side effects from the drug. Some people get sores in their mouth and so far I haven't got any...sometimes my mouth feels sensitive though.

~Jen

[D.ap]

Hi Jen

The med is dosed a little differently to say like sutent with the 2 weeks on 1 week off where sutent is 4 weeks on 1 week off.
Apparently the med reaches therapeutic levels quicker?

Have you met any other ASPS patients?

I think I recall Nhi trying yoga socks for ball of feet pain ?
I hope that gets better soon.

Looking forward to February scans!
Love
Debbie

[Bonni Hess]

Dear Jen, Thank you for your thoughtful update on your Anlotinib treatment experience thus far. My very best wishes, most positive thoughts, and greatest Hope will be with you on February 7th for VERY good and encouraging scan results that show that the drug is working to shrink your mets and prevent disease progression. In the meantime, I Hope that you are getting some relief from your Anlotinib caused painful foot hand syndrome and fatigue, and otherwise continuing to tolerate the drug well with no other negative side effects. Take care and know how deeply I care. With special hugs, healing thoughts and wishes, love, and continued Hope, Bonni

[D.ap]

Hello Jen
I was wondering if you’ve gotten your scan reports yet ?
Sure thinking of you .

Love
Debbie

[jenhy168]

Hi Debbie,

Yes got my 2/7/18 scan results back. Brain MRI - all nodules are either stable or decreased a little. Chest CT scan - stable, no new lesions. Abdomen Pelvis CT - previously treated liver lesion no significant change.

Note that these scans were compared to scans from 12/1/17. I started the trial drug in late december. I had only been on 6 weeks of treatment of anlotinib and got the most recent scans on 2/7/18.

Side effects: Feet still hurt to walk on...continued fatigue.

Currently on 2nd cycle of anlotinib treatment.

Hope all is well...and enjoying the olympics~

Jen

[D.ap]

Hello Jen

That’s great news after just 2 cycles !
How the soles of your feet feeling?

Will your scans be every 2 months indefiently ?
Bloodwork looking ok?

[jenhy168]

hi guys...hope ya'll are enjoying ur summer. wanna give an update...

So I'm still on anlotinib clinical trial. Can't remember which cycle I'm on but I've been on it since January. Basically I'm relatively stable...a couple mm increase in size of some lung target lesions...and some other target lesions they have been tracking are the same...

No new brain lesions.
Liver lesion is fine after Y90 treatment last year...no recurrence.

however i still have 2 muscular mets that are untreated. (i have more than 50 nodules in my lungs ...and obviously 99% of them haven't been treated since there's too many to directly treat). (the way we try to treat them is via anlotinib). So the 2 untreated non-lung mets are 1) per centimeter nodule in my back muscle next to t8 and 2) met in flute...(i don't know the size)

per my ct w contrast scan:
"Increased enhancement but unchanged size of known pericentimeter nodule in the left paraspinous musculature posterior to the left T8 transverse process (2-56).
Unchanged enhancing lesion in the left peri-iliac gluteus musculature (7-51) from baseline."

Right now since i'm on the clinical trial I can't treat these with SBRT or else I'd be kicked off the trial.

What are your guys thoughts on these? So far they haven't grown in size since December 2017 scan....should i leave them there for now and watch them?

~jen

[Olga]

Hi Jen - not all the clinical trial disallow treating the mets if they are not the ones designated as targeted, and provided they are painful - i.e. there is a reason to treat them. However if you ever start the immune check point inhibitor treatment (Keytruda, Opdivo etc) the soft tissue mets can be used for the radiosurgical SBRT treatment in attempt to create and abscopal effect improving the immune cancer specific recognition.

[jenhy168]

If these mets aren't painful, should I leave them alone or try to treat them?

[Olga]

There is may be a reason to treat the spinal one - that shows an Increased enhancement - could it possible invade the space between the vertebrae bones? How far is it located from the vertebrae? We have a pretty unfortunate community experience with that.
As I said they would (probably) allow to treat only the painful mets - so it needs to be painful:) get the hint.
But consult the trial conditions, it is usually shown in the trial descr. on the trials web-page.