Jen from California - Dx 2009

[jenhy168]

Hi all,

Got my Chest CT and Abdomen/pelvis CT (both w/contrast) scans back.

Chest CT showed slight growth in some of my nodules.

Abdomen pelvis CT - There was a new lesion that showed up in my December 2016 scan measured at 10 mm. It is now 13mm with my 4/3/17 scan. I'm guessing this is probably a asps met since it's growing.

Per the scan results: "- Enhancing subcapsular right lobe liver lesion currently measuring 13 mm (2-19), previously new on 12/12/16 and measuring 10 mm"

I'll be meeting with my onco on monday to discuss whether I should stay on Opdivo & vandetanib or not. I don't really have any alternative options to go with though since I've tried most drugs already.

As for the liver spot - I want to get it ablated before it gets too big. But last time when I talked to my onco he said we have to think big picture treatment wise...sometimes it's not worth treating a specific spot like the liver met if there are no symptoms. But now that we know it's growing, maybe he might say something different, so we'll see...

[ntran727]

Sorry to hear about your growing lung mets and liver lesion Jen. How many spots in the lungs do you have that they are following and did they grow at the same rate as the liver spot? I am guessing that they don't want to remove the lung mets either? Do you have any other mets that you are following or is it just the lungs and the new liver spot? Hopefully you will get some answers and a treatment plan soon. Ablation of the liver lesion before it becomes too big sounds like the right thing to do. Take care Jen and stay positive!

[D.ap]

Hi Jen

Growth is not necessarily a bad indicator .
You have quite a tumor load of tumors in your lungs .
Now in liver

How's your breathing is my question .
How are your breath sounds ?

Are you able to tolerate the side effects ok?
Mom in me says how's your weight

The liver was equal to lung increases as posed by Ntran?

Love
Debbie

[Olga]

Deb- what do you mean a growth is not necessarily a bad indicator? Are you suspecting it might be an inflammation due to immune system response around the mets? Do we know of cases when the increase continued for awhile and then the mets started to reduce in size? How long did it take for Josh mets to start to show reduced size - from the beginning of the Opdivo?

[D.ap]

Jen and Olga

Our most dramatic change happened 6 months after first dose

http://www.cureasps.org/forum/viewtopic ... =15#p10263

Jen here's an article for you to read on immune therapies and the way to possibly interpret the image

http://cureasps.org/forum/viewtopic.php?f=2&t=1282.
As hard as it is to wait for another scan, before discontinuing Opdivo , I sure wouldn't give up on Opdivo yet.
In my opinion the spots that need to be followed are the smaller tumors . It takes a good radiologist to do so .

As we know, our tumors in our lungs are always referred to in terms of being innumerable

So with that being said , that's where the focus should be with the first scan .

[D.ap]

Hi Jen

Growth is not necessarily a bad indicator .
You have quite a tumor load of tumors in your lungs .
Now in liver

How's your breathing is my question .
How are your breath sounds ?

Are you able to tolerate the side effects ok?
Mom in me says how's your weight

The liver was equal to lung increases as posed by Ntran?

Love
Debbie

Jen ,

Another thought

Was the liver, equal to lung increases as posed by Ntran?
Since you are taking the TKI along with the Opdivo , I wonder if the TKI is creating a little different image as well?
Joshuas liver increased with his 4 month scan but decreased on his 6 month scan.

http://www.cureasps.org/forum/viewtopic ... =15#p10279

Josh took sutent 7 months prior to starting Opdivo and his largest tumors on sutent increased 5mm along with adrenal tumors appeared.
So our increase happened on the sutent.

However with the Opdivo on board 7 months later, I feel that having had that response , Josh was able to respond to the Opdivo better.

It's my understanding that the TKI , being an anti vascular and or inhibitor of vessels, in theory, helps the tumor to recover from hypoxia, to create a more uniform network of a vascular systems. So when used with an immune therapy, the med can reach and act more efficiently?

helps the tumor to recover from hypoxia, to create a more uniform network of a vascular systems

http://cureasps.org/forum/viewtopic.php?f=3&t=1364

So when used with an immune therapy

http://cureasps.org/forum/viewtopic.php?f=3&t=1350

Love
Debbie

[arojussi]

I would ablate liver tumor, because ablation can allow immunotherapy to be more effective. After that I would consider using opdivo or keytruda with yervoy.

[jenhy168]

My onco is in support to ablate 13mm Liver tumor with RFA.

I would go to Dr Suh at UCLA, but he specializes in lung ablation, not liver. Waiting for my ucla referral for interventional radiologist.

I'm continuing Opdivo immunotherapy for now, and stopping Vandetanib. I may try axitinib next with Opdivo...depending on whether I can get access to the drug or not.

[D.ap]

Hi Jen

The search for doctor to perform liver ablation begins Hugs

I feel as does Jussi it's great news.

As Olga has said and I concur ,find someone who is experienced .Period. You have time so be methodical .
Dr Auon is experienced
He's in Michigan tho?

Procedure should be inclusive of real time ablation scans as they will let docs know of success .


http://pubs.rsna.org/doi/full/10.1148/r ... g01oc08s41

I'm wanting to research axitinib(sp) with Opdivo .
Can your doctor network with Miami clinal trial ?
Premolomab and axit?

I'd be interested to know if it's absolutely necessary for you to continue with TKI, after all you've taken a myriad of TKIs ,prior to your most recent Opdivo beginnings.

Love
Debbie

[Bonni Hess]

Dear Jen,
Thank you for your thoughtful update. I am very grateful that your oncologist is now supporting the Radiofrequency Ablation of your 13 mm. liver met. I strongly disagree with his previously expressed attitude that "we have to think big picture treatment wise...sometimes it's not worth treating a specific spot like the liver met if there are no symptoms." Based on my 15 and a half years of extensive research,networking, observations, and hard earned experience with Brittany's ASPS, I feel very strongly that It is critically important to NOT wait for a tumor to become symptomatic because once a tumor is causing symptoms, it may be too large to successfully resect/ablate/or treat with radiosurgery. Tumors need to be removed/ablated/ or treated with radiosurgery at their smallest most treatable size to ensure the best chance of a successful outcome.I Hope that the RFA can be scheduled as soon as possible so that you can then move forward with your systemic treatment. Have you ever considered Cediranib treatment, or have you considered switching from Opdivo to Pembrolizumab (Keytruda) with or without Axitinib? An ASPS patient named Shelby Hollar whose father Tim is no longer/has never been very active on this Board, shared yesterday on the ASPS Facebook site that she has had a significant and very encouraging 30% shrinkage of her mets and stable disease since starting a Pembrolizumab Clinical Trial at MD Anderson three months ago. I don't personally know how treatment results between Opdivo and Pembrolizumab (Keytruda) compare for those ASPS patients who are being treated with these promising new targeted checkpoint inhibitor immunotherapy drugs, but i think that it would definitely be worth while for you to research, obtain documented up to date data about, and discuss with your oncologist before you make your next treatment decision. I Hope that you don't have to wait very long to obtain a referral and scheduled appointment for your liver RFA, and I Hope that once you have the procedure, that the RFA will be successful in completely destroying your liver met as it was for Brittany when she had RFA for her liver met in 2004. Take good care of yourself dear Jen, stay strong, and keep in touch with the Board as you are able. With special hugs, caring thoughts healing wishes, love, and continued Hope, Bonni

[jenhy168]

I agree with you Bonni regarding the liver met treatment. I'm not eligible to be on cediranib trial because one of the first TKI drugs that I tried made me ineligible for cediranib.

Debbie-
I know there are the other RFA docs like Dr Auon in Michigan, but this would be out of network treatment for me and would be too costly I think.

Will update once I hear back regarding my referral and whether I can get axitinib access...thanks guys <3

jen

[Olga]

Jen - drs in Detroit prefer to perform cryo versus RFA as in some locations it is less damaging and technically feasible (where RFA might be not due to proximity to some structures). So drs in Detroit are like top experts in cryo and even your insurance could possibly pay out of network if complicated cryo needed - they work with the insurance themselves. Are you sure that Dr.Suh does not do liver ablations? Also are you sure that previous TKI disqualifies you for any cediranib trial permanently (sometimes it is a time for the wash out).

[D.ap]

I agree with Olga, Jen .

Local treatment ie Cryo, probe oriented , verses colateral based RFA is maybe the better route?
Consider
Love
Debbie

[Bonni Hess]

Dear Jen,
I agree with Olga and Debbie that you should explore the alternative treatment of Cryo for your liver met especially if the met is is located in a difficult area such as too close to blood vessels or other organs. RFA was thankfully very successful for Brittany's liver met when she underwent the procedure 12 and a half years ago, but her liver met was located in an easily treatable area of the liver. You definitely need to have an interventional radiologist who is as experienced and knowledgeabe as possible, so you may need to go to Detroit to obtain the best and most expert treatment. It would certainly be advisable for you to better explore this option. Also, Olga has made an excellent point about the possibility of you now being eligible for Cediranib treatment since it has been quite awhile since you received TKI treatment. All of these issues warrant further research. With special caring thoughts, healing wishes, love, and continued Hope,
Bonni

[jenhy168]

Good point regarding the Cediranib treatment. I can ask again in a couple months after my next scans.

I saw Dr Padia at UCLA who is a interventional radiologist that specializes in abdominal interventions such as liver RFA. He seems experienced and says that his colleague and him does this procedure a couple hundred times a year. The met is located near the outer side of the liver, so it is pretty easily accesible. The only issue of the location is that I'll feel more sore when recovering...may take a couple weeks especially since I'm thin.

At this time, as long as I get authorization for the procedure, I think i"m just going to have the procedure done here at UCLA since it's In Network. Dr Littrup is out of network and don't think I can pay $6k out of pocket to get the procedure done elsewhere. I feel confident with Dr Padia's experience, and he explained everything very patiently and was thorough.

Hopefully I can get scheduled for the RFA soon since liver mets tend to grow fast....

I'm still trying to get access to axitinib. My insurance (of course) denied it and denied the appeal. We are trying to get it directly from Pfizer now.

Great weather in cali this week...going to be pretty warm on the weekend too! Kiwi says hi.
~jen