Jen from California - Dx 2009

[jenhy168]

Hi Debbie,
I see....what is Josh planning to do with the two other liver spots that weren't treated last year since only one was ablated? Just keep watching since they are stable for now?

[D.ap]

Jen
So to recap, one was ablated in July 2015 and the other 2 were noted as well however they increased in size beginning this year in September I believe After the 4th dose or so of Opdivo

The ablated has not reduced significantly and that will be a question I will send to our onc or call Dr Aoun's office as Barb is wonderful to talk to.
I'd get a copy of your CT after talking to your oncologist and move forward with their response if you need to. Dr Aoun's. He is Dr Litrupps apprentice

The important talk needs to focus around what is seen and where. 1cm (10mm) should be addressed here and now.

We will see after we have the next series of scans what the plan is for Josh
We are following brain and chest and lower pelvic area, kidney adrenal pancreases and liver.
So our plate is full but not insurmountable. We've began to reduce tumors and that is a great step forward
Please let us know what is said and by all means keep in touch
Love to you
Would love to see pics of your trip

[D.ap]

I've tried to find Dr Aoun's info however Olga can probably give the specifics if you need them

http://cureasps.org/forum/viewtopic.php ... trup#p9913
However Dr Littrup is returning to Michigan, if my mind is recalling correctly

Found it
So good to know that mind is doing ok

http://cureasps.org/forum/viewtopic.php ... trup#p9913

[Bonni Hess]

Dear Jen, I am so sorry for your concerning scan results which show a suspected liver met. Unfortunately ASPS does sometimes metastasize to the liver as happened with Brittany in 2004. Thankfully Brittany's liver met was found at a relatively small size and was able to be successfully treated by RFA. Brittany was hospitalized for the RFA procedure but she made a speedy and full post RFA recovery, with minimal discomfort if I remember correctly. Given the known nature of ASPS to metastasize to the liver, and the fact that your suspected met has not been seen on previous scans, I personally think that a biopsy of the lesion is unnecessary especially since a biopsy may risk possible spread of the disease. I think that you should discuss and explore treatment options with your oncologist to resect or ablate the suspected met as soon as possible. I am personally not an advocate of the "watch and wait" approach since if it is an ASPS met it could grow too large to be successfully resected or ablated. In addition to my concern about the suspected met, I am concerned about the implication that the development of a new met may indicate that your Vandetanib treatment is heartbreakingly not working to stabilize the progression of your disease. My very best wishes are with you for an easy, successful, and speedy resolution to this new concern, and I will be anxiously awaiting your next update when your time and the situation allow. Reaching out to embrace you with special hugs, caring thoughts, healing wishes, much love, and continued Hope, Bonni

[Olga]

Jen, I agree with Bonni - the biopsy is not needed, they can order MRI and if the tumor is vascular, it is ASPS. We already had few cases here with the mets to the liver, it is not that rare actually. The radiologist suggesting "Attention on short interval follow-up", but also MRI is a much better scan for the abdomen located mets. 10-15 mm size is the best for the percutaneous ablations. Get the consultation from the local interventional radiologists someone like Dr.Suh, they might be doing it locally. We prefer cryo but in liver it can be also done by RFA - as long as the doctor is very experienced in it. Dr.Littrup and Dr.Aoun are the top drs in the cryo, so if the insurance could pay I would go there but if not, look for the alternatives.

[D.ap]

Jen
This was our discussion after Josh already had the liver treated

http://www.cureasps.org/forum/viewtopic.php?f=41&t=1070
Keep the faith girl !
Hugs
Debbie

[jenhy168]

Thank you guys.

I agree I don't want to watch and wait. Better to take care of it when it's smaller and could be treatable by ablation. I'll see what my oncologist suggests tomorrow. Dr Suh would be preferable only because he's local at UCLA and in network. If I go to Michigan, there's a good chance the cost would be out of pocket for me.

I'm not sure if I'll be continuing vandetanib...probably not, but my oncologist will talk to me about it tomorrow. Will keep you updated.

[Bonni Hess]

Dear Jen, My very best wishes are with you for a successful and productive outcome to your meeting with your oncologist tomorrow. I am so grateful that you are taking a pro-active approach to treating the suspected liver met and I will be anxiously awaiting your update on your oncologist's recommendations regarding both the suspected liver met and the status of your Vandetanib treatment. Try to get a good and restful night's sleep and feel the warm embrace of my special hugs, caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

Saw my oncologist today. He suggests I stop vandetanib and to try a clinical trial...I think the same one that Jolie's mom is doing. We have to see if I am eligible and whether there's a slot for me.

If not, then my other option is to try Opdivo again in combination with vandetanib.

For now, I'll be waiting to see if I'll be accepted to the clinical trial.

--
Re. the indeterminable liver spot that's 10mm from my abdomen CT scan - my doc thinks that we should wait to see what happens on my next scan because it's hard to tell if it's cancer or not. Could be from contrast. He thinks it's small now so we'll try to treat the whole body with a treatment first and see. He usually likes to take the conservative approach rather than try to ablate it now, not knowing for sure if it's cancer or not.
Even though I don't like the wait and see approach, I feel like my doc is pretty against doing anything with it for now. Do you know at what size becomes too big to cryo or ablate a lesion/met? I believe there's some kind of size limit for cryo or ablation.

[Olga]

The optimal size for an ablation is 10-15 mm, it is reliably effective till 20-25 mm and then it starts to be at the risk for the incomplete ablation and the procedure itself isn't that easy anymore for the body as the necrotic amount that ablation creates is pretty big (the size of the met plus a rim of about 20 mm around it). The cut off size is pretty big now, sometimes even 50-60 mm sized mets are getting ablated but there is often a local recurrence. If you go on the clinical trial, you can not have an ablation during the trial. Did you ask about the MRI and how long ago was the CT scan done?
It is a typical oncologist point of view, they like to treat the metastatic state systemically. For ASPS it is not always the best strategy given its slow growing nature.

[jenhy168]

Trial: Pfizer's PF-06801591

--
Hi Olga, the CT abdominal scan was from this past Monday. It was compared to a pet scan in May. Not sure what I can do if my oncologist doesn't think I should do ablation now...?

[Olga]

Do you need a referral to get your case reviewed by the local interventional radiologist? We have been in this situation numerous times and would just get the scans reviewed by the specialty drs elsewhere. But we paid out of pocket then when it was not done locally.
A pet scan in May - was is a PET only or PET/CT? The liver met of the small size will not lit up on the PET scan. Do you have a CT scan of the same area earlier than May?
On the other hand he probably thinks that this newly found liver met does not represent any immediate danger to your life but the growing lung mets do - they are pretty large by now, right? So addressing the liver met has lesser priority than the addressing the lung mets and they are to big for the ablations as I remember. So he is looking for the solution that could address the lung mets first.
You can try to send the PM to Jolie re. this trial.

[jenhy168]

**May 2016- PET CT SKULL BASE TO MID-THIGH AND DIAG CT W IV CONTRAST
ABDOMEN/PELVIS:
Liver: Unremarkable.
Gallbladder and bile ducts: Unremarkable.
Spleen, pancreas, adrenals: Unremarkable.
Kidneys and ureters: Unremarkable.
Bowel: Unremarkable.
Bladder and reproductive organs: Unremarkable.
Lymph nodes: Unremarkable.
Peritoneum: Unremarkable.
Vessels: Unremarkable.
Abdominal wall: Unremarkable.

I had an abdomen pelvis CT scan in December 2015 - nothing was found then.

Re. what you said about immediate danger of the liver met vs growing lung mets - I'm pretty sure that's what my onco is thinking.

And yes, I think I need a referral to get my case reviewed by Dr Suh since I have HMO.

[jenhy168]

I wonder if the below December 15 CT of abd/pelv results Italicized below is referring to the liver...

Abdomen Pelvis CT Scan - December 2015 results:
ONCOLOGIC FINDINGS:
No new lesion in the abdomen/pelvis.

Stable appearance of postsurgical changes in the left proximal thigh.

ADDITIONAL FINDINGS:
Please see separate report from dedicated CT of the chest performed the same day for thoracic findings.

Liver is normal in size and contour.

Interval increase in size of focal geographic low density along the perifalcine medial left lobe, increased compared to prior but stable compared to prior signal back to 2012. Punctate low density lesion in the periphery of the right lobe of (2-24) is
unchanged and likely cystic.

Gallbladder, spleen, adrenal glands, pancreas, and kidneys are normal in appearance.

The bowel is normal in caliber and thickness.

Urinary bladder is normal. Physiologic appearance of the uterus and adnexal structures.

No loculated fluid collections or lymphadenopathy in the abdomen/pelvis.

No suspicious osseous lesion.

[D.ap]

Hi Jen
I am at a loss
I believe it's referring to a lobe?? Liver
I hope you make call in morn to clarify the situation

So liver a year ago and reported prior to your treatments
Radiation of lung ,immune therapies , systemic treatment