Jen from California - Dx 2009

[D.ap]

Hi all,

sorry I haven't posted in awhile...I'm usually floating around the forum reading posts, but sometimes don't get to writing.

I had a brain MRI last month and it showed that all 3 met spots are "stable". No new lesions. So that's good. I'm due for another CT Chest & abdominal pelvis scan in December, so we'll see if the vandetanib is still working. *hope so!*

My Greece trip was amazing...went to Athens, Santorini and Crete. Santorini was my favorite...all the white buildings on the cliffside and the beautiful Aegean sea are breathtaking.

Weather in Cali is about 80 degrees now,...sunny and warm in November

Will update again after my scans next mo.
<3 jen

Hi Jen
Sorry for the late response but computer on the fritz
Stable is good and hope you are continuing with good results with vandetanib.
The CT will show rib and lung tumor tracking?
How is your weight treating you today?

The trip sounds amazing! can you share pics
Weather incrediable here in the midwest. Got my cannas dug up and in garage today.

We have a new pup/ 9 year old that we've inherited . A 11lb that looks like a silky/schnauzer Yorker
Akin to Kiwi

http://www.cureasps.org/forum/viewtopic ... 9816#p9813

Her name is Sugar

Whats plan after scan?
Much Love

Debbie and Sugar

[ntran727]

Glad to hear your brain lesions are stable Jen. I tried to browse through your posts to get an idea of the full story and from what I gathered so far, you have the brain and lung mets and possible rib met? There were too many posts for me to read to conclude anything about the ribs. Can you clarify for me? Also I saw that you were on pazopanib before and now the new one for the past 4 months. Did you take any other TKIs between those 2? I will be starting on Sutent soon and not looking forward to it. I just got back from Thailand and planning on going to Greece sometime soon! Gonna be visiting my family in SoCal by you for Christmas and can't wait for the warm weather

[jenhy168]

I uploaded a couple photos from Greece to the community photos. All my photos are too huge to upload, so I just resized a couple. The one I attached here is from the Temple of Zeus in Athens.

Sugar is adorable!

[jenhy168]

The last time I had my bone scan it showed the rib met was stable/the same size. So hope it stays that way. To recap on my rib met - I had one on my right rib on the side, which i treated with SBRT radiation at UCLA.
I had taken Pazopanib, then I think Opdivo (immunotherapy), then Vandetanib (current). Sutent was tolerable for me...I was on it for about a year. Other than the typical upset stomach, weakness, etc, it was for the most part OK for me. I hope it works well for you!~ <3

The chest CT that I have coming up in December will just be tracking my lung nodules. I don't think my rib met is able to show up in the past CTs for whatever reason. Must be hard to see in its specific location.

My appetite lately has increased and I've gained a little weight so I'm up to 100lbs as of a couple weeks ago. I eat so much! But I don't mind, I want to gain weight even if it's fat weight (since I can't really gain muscle anymore).

love, jen

[D.ap]

Jen
Again the picture is amazing!
Remind us of the largest lung tumors and what size are they?

Josh is up to 108 and our last visit 2 weeks ago after the witnessing of the weight gain , as we were all watching , he goes after slapping his stomach, " portly"

[jenhy168]

The largest nodule in the lung was about 40mm....but I had that irradiated last year with traditional radiation. Not sure what size is it now since it shows up as a blur on a scan and there's so many it's hard to measure without CT contrast...

[jenhy168]

Just wanted to share one more pic of Kiwi.

[D.ap]

Jen
Was Kiwi able to travel with you ?
You can't do contrast ?

[D.ap]

Also Jen you tried Opdivo last year around this time. Right? You reported growth in Decemberish after how long on Opdivo ?
I'd be curious if the lung mets shrank after you were off for the months following. I know you started Vandetanib soon after. At what point did you have the radiation treatment on the 4cm tumor in lung?

I would hope the doctor is following that too

[Bonni Hess]

Dear Jen, Thank you for the additional shared information and nice pictures. You are really a beautiful young woman and your puppy Kiwi is darling. I think it is very important to more definitively follow the size of your lung mets, especially the largest 4 Cm. one so that you you can accurately determine exactly what the size of the large met is rather than "a blur on the scan". Hopefully your December chest CT will be done with contrast so that you will have an accurate assessment of the size of the mets and if they are stable or growing. In the meantime, take care, enjoy your increased appetite and eating , and have a beautiful and wonderful Thanksgiving season. With special hugs and caring thoughts, healing wishes, love, and continued Hope, Bonni

[jenhy168]

I am able to do contrast for chest CTs but normally I get contrast only if I know I'm going to get lung radiation for planning purposes. My routine CT chest scans are not ordered with contrast so I won't be exposed to too much contrast.

I can ask my doctors if the contrast will help with measuring my largest 4cm nodule in my lung. I call it a blur because there's multiple nodules near / or next to it, and the radiation make the nodules cloudy to look at in the image. So I think it makes it hard for them to accurately measure.

Yes I took opdivo last year but only for 3 months. I think I took it during the summer time or right after summer? I'd have to check. Yes there was increase in size in nodules after 3 months of treatment. But I do wonder the same thing if I experienced shrinkage after going off of opdivo. I asked my oncologist if being on opdivo may make the nodules seem like they grew in size due to inflammation, thus creating a false sense of the drug not working, but my doc said that's not the case.... I don't know for sure what to believe though.

I had a couple weeks of traditional radiation treatment to my left lung around August or September of last year. I'll follow up with my radonc after my next Chest CT scan to go over the irradiated area and see if there's stability and or improvement.

I guess I"ll ask my doc for contrast to go along with my chest CT...and see what he says.

Thanks all~ <3

jen

[D.ap]

Hi Jen
Thank you for the reply
Since dx'd you've had multiple lung tumors treated and as of 2012 you've needed the aid of the inhaler, correct?
Are you currently in need of a daily inhaler? Or do you need it when you exercise/ walk long distance?
You guys scheduled for cooler weather Friday on? We will be having below 50 degree day..already have had frost and our wild flowers are history.

Next year will be glorious. Maybe you should plan on coming to our 4th of July celebration 2017
Would love to have you
Love
Debbie

[arojussi]

Opvido can cause pseudoprogression. Tumors might look bigger and even new tumors might appear, but after some more time tumors should shrink or at least stay stable. In keytruda I think pseudoprogression is possible even 12 weeks after starting treatment.

[D.ap]

Jussi and Jen

Good point Jussi

I suspect the tumors that can reportedly appear later could be micromets being addressed by the immune system possibly?

Waiting not 3 months but 6 months to D.C. MED maybe the ticket if given the choice . Immune attack then reduction of tumor Patience don't always have that choice /luxuary ,depending where the increase takes place .The inflammation

[Bonni Hess]

Hello again dear Jen,
I understand the doctors' reluctance to expose you to too much contrast, but I personally feel that the benefits of being able to obtain more definitive scan results outweighs the risks, since it is essential to accurately determine whether or not there is met growth or stability. I would personally encourage you to request contrast with your chest CT in December. Brittany has always had contrast with all of her scans for the past 15+ years since her initial ASPS diagnosis in July 2001 so that the most definitive scan results can be obtained. I would think that this would be especially important for you given your multiple mets and the cloudiness of the images without contrast.
Regarding the issue of possible pseudoprogression with immunotherapy drugs like Opdivo or Keytruda, Hopefully more documented data will become available soon regarding this important issue so that it can be better known /determined if the patient may be experiencing inflammation related pseudoprogression, or actual disease progression and tumor growth. As with everything with this very challenging disease, there remain more questions than answers and too many unknowns.
Take care dear Jen and keep in touch with the Board as you are able.
With more special caring thoughts, healing wishes, love, and continued Hope,
Bonni