Jen from California - Dx 2009

[Olga]

I think that there is only the need to know the exact size of the mets with the precision if you potentially have the plan/or change of plan/current treatment depends on the small size deviations. If the overall plan stays the same with the mm changes, the contrast might unnecessarily hurt already fragile health of the over-treated patient. Could the surgery or cryoablation be done if the radiation treatment to the biggest lung mets was incomplete and it eventually start to grow? As I understand these options were evaluated and ruled out before the radiation treatment was done. Is it important for the current systemic treatment result evaluation to know the exact size with the mm precision? I am not sure but not likely and it is the reason the oncologist did not request it to be with the contrast, so in this case I would side with the oncologist. You are not on a clinical trial so the oncologist is not limited by the protocol rules.
We have the CT scans of the lungs or MRI of the abdomen with the contrast only because Ivan had many cryoablations that we are watching for and if they fail (if they were incompletely ablated and there are areas of the viable tumor inside that could start to grow with the time) we could go for more cryo.

[arojussi]

As long as kidneys are fine. There is no problem with contrast. I asked once why I had contrast and found out that it doesnt increase radiation exposure.

[ntran727]

I agree with Jussi. Perhaps they want to prevent future allergic reactions to the contrast?

[Olga]

I am sorry to say that there are numerous possible side effect from the contrast media. Here is a link to the relevant info:
http://www.esur.org/guidelines/
I coped some from there.
They can occur early and late.
They can be
MILD: Nausea, mild vomiting, Urticaria, Itching
MODERATE: Severe vomiting
Marked urticaria
Bronchospasm
Facial/laryngeal edema
Vasovagal attack

SEVERE: Hypotensive shock
Respiratory arrest
Cardiac arrest
Convulsion

There are risk factors so the risk might be not high for everyone but there has to be a valid reason to have a scanning performed with the contrast.

[Bonni Hess]

Dear ASPS Community Friends,
Olga has made some good points regarding the lack of necessity for contrast being used for chest CT scans, and the possible side effects/risks of contrast use that Jen has posted are concerning. However, I personally feel that the risk of not having an accurate assessment of possible increased lung met growth, no matter how small the increase, justifies/requires the use of contrast so that it is possible to determine if there is any disease progression which may necessitate a change in the systemic treatment, or resection/ablation of the largest and most concerning growing lung me(s). Chest CT scans can be an indicator of disease progression, especially if other scans are not being done to follow other areas of the body, as seems to be the case with Jen who is only scheduled for a chest CT in December instead of abdominal/pelvic scans also. Therefore, it seems to me that an accurate determination of the status of the lung mets using contrast is essential, instead of the inconclusive scan results that say that the largest met is "a blur" and "the nodules look cloudy which makes them difficult to accurately measure". With the presence of a relatively large four Cm lung met as Jen has, and no contrast being used with the lung CT, I would personally be concerned about waiting another three months to have another CT scan during which time the large met could possibly grow too large to be treated if any increased growth isn't accurately determined in the non contrast CT. As I have always said, these are difficult personal decisions which need to be made based on as much researched and anecdotal information as possible. I can only share my personal thoughts, insights, and recommendations based on 15+ years of ASPS experience and extensive research, networking, and observations.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[jenhy168]

Thanks for your input all.

I followed up with my oncologist and apparently he did order my chest ct scan WITH contrast, and abdominal pelvis with oral contrast (as usual).

I don't normally have strong side effects to contrast, so I think i'm just going to get the Chest CT scan with contrast this time around since i want a better chance at seeing the "blurry" irradiated 4cm nodule / group of nodules. There's a chance that with contrast, the irradiated area will still be not measurable.

The below is a snippet from my December 2015 Chest CT With contrast results, relating to the irradiated 4cm nodule / group of nodules in my left lung:

"There is increased geographic airspace and groundglass attenuation surrounding the larger masses in the left lower lobe superior segment and central basilar left lower lobe, as was as demonstrating transurethral extension into the central left upper
lobe, likely reflecting evolving postradiation effect. There is persistent mild narrowing of the traversing inferior segmental lingular airway which remains patent."

[jenhy168]

Regarding Opdivo and pseudoprogession, I"ll try to remember to ask my oncologist again next time about it. I asked him about it before and I THINK he said it's probably not inflammation / pseudo progression. I think over the 3 mos of opdivo, my target nodules increased about 1 mm on multiple nodules that we track. So he decided for me to stop.

I hope my radonc can shed light in January when I see him whether the irradiated area and 4cm nodule looks stable or not. It was a pretty large area that he radiated using traditional radiation, so the cloudiness of the image is pretty present.

If vandetanib stops working, I wonder if it's worth trying opdivo again....I don't think my oncologist would want me to try it again but also I don't know if I would be approved to get Opdivo again for free. I had high hopes for Opdivo, and was disheartened when I had to stop it.

[Olga]

Jen, here is an article to discuss with the radiologist and with the oncologist and potentially to use for the Opdivo approval - Deb posted it sometimes ago and it is a very interesting article and the new info that your oncologist probably did not have at the time of yours conversation with him.
Cancer Immunotherapy: Imaging Assessment of Novel Treatment Response Patterns and Immune-related Adverse Events
http://pubs.rsna.org/doi/full/10.1148/rg.352140121
It is avail. in fill text and all people on the novel/non-traditional chemotherapy drugs should read it.
They say (I copy from there):
"Early clinical experience with recombinant cytokines, cancer vaccines, and immunomodulatory monoclonal antibodies has demonstrated a delayed response to treatment compared with that of cytotoxic chemotherapy, clinically significant disease stability, and transient enlargement of tumors or the appearance of new tumors followed by tumor shrinkage or long-term stability of tumor size (4)."

[D.ap]

Jen
I'm ecstatic that you are revisiting the Opdivo
I as you would sure like to be doubly sure that it wasn't working when it was discontinued
Our plan from the get go of taking Opdivo was to put off the first CT scan of the lung/ pelvic area for four months, if possible . The thought was to obtain a picture of the shrinkage NOT the inflammation that happens with immune therapy

Let us know either way
42 (feels like 34) and cold. Let our winter begin

Our doctor can be reached if you'd like?

[jenhy168]

Thank you for the info, I will ask him about it again next month.

It's been about 60 degrees here in So Cal...and it's pretty chilly for me. Will be in Seoul in a week and I think the low is 20 degrees! I'll be frozen..

[jcs2007]

Thanks for sharing the info on opdivo. We are looking into what systemic choices are out there for ASPS.
Stay warm. Cindy

[jenhy168]

hello,

Got my Abdomen Pelvis CT with contrast results back and the results noted:
-10 mm hypervascular focus in the subcapsular right liver, not seen on prior studies, indeterminate
Summary: Pericentimeter hypervascular focus in the right liver, not apparent on prior studies, is indeterminate. Attention on short interval follow-up.

Is ASPS known to metastasize to the liver? I'm scheduled to meet with my oncologist to discuss on Thursday, but wanted to get you guys' input and if anyone has any experience in treating the liver if there's a met located there.

thx
jen

[D.ap]

Hi Jen

So even tho we never got a biopsy performed, we have had a2.5cm tumor treated by Dr Auon in Detroit Michigan and we are presently watching 2 other images in Joshua's liver.

This is the procedure we had done last June of 2015


https://www.ncbi.nlm.nih.gov/m/pubmed/1 ... 03/related
Also I was reading of contrast causing a situation with imaging to appear on the CT

http://www.ajronline.org/doi/full/10.22 ... 2.1810598a

Your oncologist and Onc/radiologist should be able to assess the image as well.

Hope you get answers soon
Love
Debbie

[jenhy168]

Hi Debbie, Thx for ur quick response.
How many liver mets did Josh have? You mentioned you're watching 2 other images in his liver....Were the docs pretty sure that it was ASPS even though there was no biopsy?

Was his ablation procedure successful with short recovery time? Was this procedure that Josh had more effective than RFA or radiation SBRT?
Was the procedure covered by insurance or was it super expensive being done in Michigan?

I wonder if an MRI would be better at showing what it is...

[D.ap]

Hi Jen

3 thus far

"1. overall worsening of metastatic disease in liver. Several new liver lesions are identified 19 mm and 10 mm . Ablated tumor decreased slightly "
Suspicious for ASPS

http://cureasps.org/forum/viewtopic.php ... =165#p9775

We preferred cryo over RFA
http://cureasps.org/forum/viewtopic.php ... 1127#p8554

Blue Cross covered it

We got a biopsy during the procedure that confirmed ASPS

http://cureasps.org/forum/viewtopic.php ... =120#p8252