Jen from California - Dx 2009

Those who lost their battle with ASPS :(
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

Hi all, Happy New Year :)

I had my Brain SRS a couple weeks back with no problems. Turns out I had 2 spots. One at 3mm and another at about 1mm. Thankfully we caught the tiny one in the planning MRI before the radiation. Hopefully treatment is successful, but I guess we'll wait and see.

Yes I have stopped the Opdivo PD1 drug since there was growth in the lung nodules. I stopped this a few mos ago, so for the past few months I haven't been on any systemic drug.

I'm working on getting financial assistance for Vandetanib, otherwise it'd cost $3k/mo after insurance.

Raining now in Cali..el nino is coming! Hope all is well.

<3 Jen
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

Kiwi says hello
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jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

Hi all,

Just came back from my 2 wk Barcelona & Italy cruise vacation on Sunday evening, which was lots of fun (minus the long flights). Unfortunately yesterday morning, I started coughing up lots of blood. This is a first for me. I went to UCLA's ER and waited for 5 hrs for them to do an X Ray & chest CT w contrast. They did not see any pulmonary embolism, but they did see some small hemorrhaging / possibly bursted blood vessel due to tumor load in my upper right lung. :( Doc didn't recommend any treatment because we hope that it resolves itself within a couple days.

I hope to start Vandetanib after I get better from this...

90 degrees in LA now..so hot out!

~Jen
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

Hi Jen
Wow. I'm sure sorry to hear of your hemmoraging :?
Does doctor think the flight started the bleed ?
You've been off opdivo for 4 months ?
What was your main reason for stopping the Med?

The visit to Italy sounds wonderful.
I'll write more later as I'm at work :roll:
We will be seeing 70 degree weather in a day or so. Crazy huh

Love
Debbie
Debbie
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

The ER doctor doesn't think the flight caused the bleed but maybe the stress of traveling affected me.

We stopped Opdivo because there was still growth in the nodules despite being on OPdivo for 3 mos.

Yes the Italy vacation was lovely. I went with my parents and BF and it was my first time in Europe. :) Hope to visit France next time.
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

Hi Jen

Apparently there's been some talk of a pseudo progression with the PD drugs .
You've heard of it?

http://www.cureasps.org/forum/viewtopic ... 8808#p8808

On scans it looks like progression but in reality the meds are continuing to work even after discontinuation .
Also there is a doc at UCLA who posted a u-tube on PD1 drugs

http://www.cureasps.org/forum/viewtopic ... 1214#p9044
Debbie
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

jenhy168 wrote:Hi all,

Just came back from my 2 wk Barcelona & Italy cruise vacation on Sunday evening, which was lots of fun (minus the long flights). Unfortunately yesterday morning, I started coughing up lots of blood. This is a first for me. I went to UCLA's ER and waited for 5 hrs for them to do an X Ray & chest CT w contrast. They did not see any pulmonary embolism, but they did see some small hemorrhaging / possibly bursted blood vessel due to tumor load in my upper right lung. :( Doc didn't recommend any treatment because we hope that it resolves itself within a couple days.

I hope to start Vandetanib after I get better from this...

90 degrees in LA now..so hot out!

~Jen
Hi Jen

How's the coughing up of blood?
I hope you are doing better if not completely better! :)

What did your Onc say about the hemorrhaging ?
Debbie
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

Hi Debbie,

The coughing up blood didn't stop for 3 days so I got a bronchoscopy to check it out. He wasn't able to coderize it since it was not reachable from going in through the mouth. So I ended up being hospitalized to get another procedure by interventional docs the next day. They basically went up my artery through my right groin and went all the way into my lungs to stop the bleeding. They used contrast, x rays and a camera to assist their efforts. They clogged the bursted vessel with a tiny ball. They said it was a bronchial artery (on the right lung). They also blocked the left lung bronchial artery just in case something like this happens to the other side too. I don't really remember as much of the details since the whole week I was suffering from the Flu as well. Being hospitalized sucks and I was extra weak from being put under for the bronchoscopy and not being able to eat for 2 mornings straight due to the 2 procedures that required anesthesia - deep sedation. After the interventional operation, I stayed in the hospital one more day so they can watch me. The whole ordeal (coughing up blood + Flu) after getting back from my trip caused me to loose like almost 8 lbs. I had bad fevers for almost a week straight. All this made my body super weak, and I had no appetite, and I was still coughing a lot on top of this which makes me super exhausted. After my interventional operation, my jaw also had LOTS of pain since the operation required my mouth to be held open for breathing tubes etc for like 3 hours. I have TMJ / lock jaw issues so my jaw must of got strained and so the jaw pain was really bad that even vicodin or oxycodone didn't even help.

I'm getting a little bit better each day now, and finally I have no more fevers since 2 days ago. Regaining my appetite and able to walk a little more each day. Still coughing though with right rib pain.

Docs can't really say why exactly this vessel bursted, but sometimes it just happens. It was next to a nodule so it was likely feeding it. Next steps is for me to see my oncologist and radiation oncologist next Thursday. Not sure if my radonc wants to radiate something or not. I'm starting to feel that the radiation doesn't do much though....especially when it's not SBRT.

I wonder if anything like this broken blood vessel in the lung has ever happened to anyone? It seems that I"m the only one with the permanent collapsed right lower lobe lung and lung vessels bursting...weird things happen to me I guess.

love jen
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

Hi Jen

Wow I am so sorry to hear of all you've been through.
Are these effectly stints ?
There is flu and other cold ? Going around.
What kind of meds are you currently taking for your cough?
When's your next brain MRI?
Debbie
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

I don't know if they are like stents...?

I don't have anything scheduled yet for my brain follow up. They are supposed to call me but docs/health admin love dropping the ball on that so I should probably follow up and ask since I had my brain mets radiated in December. 3 month follow up is the right timing, correct? I wonder if they'd be able to see if it has gotten smaller or not just within a 3 mo time period...?

They gave me an inhaler to help with the cough, but i haven't used it yet.

It was definitely the flu since I tested positive for it when they went in during the operation. I took 4 days of tamiflu, even though it didn't seem to do anything since they didn't catch it early enough.

I haven't had a bone scan in over a year....I should probably get on that.
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

This flu and cold virus sure causes a lot of phlegm so don't be shy about having X-rays to detect pneumonia if you don't start feeling better
How will the doc follow up on the bleeds?
As for the scans
good plan. If the jaw pain doesn't let up
I would get a MRI sooner than later.
Hope you continue on with the feeling of improved health. I'm home today with a fluish illness and my German Shepard nurse, Gabbie, is taking care of me :D
Hope Kiwi is helping too !
Love
Debbie
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

There's no follow up on the bleeds. I guess if my next Chest CT scan doesn't look weird, nothing else will be done.

Glad your German Shepard is helping out :) Kiwi is too small (6 lbs) so she's pretty useless for tasks other than giving kisses and love.

I will follow up with my radonc re the MRI.
Bonni Hess
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Re: Jen from California - Dx 2009

Post by Bonni Hess »

Dear Jen,
I am sorry to be slow in responding to all of your recent posts and thoughtful updated information but our computer was hacked :-( and we have been having ongoing internet problems that restrict my computer use :-(. I am so deeply saddened and sorry for all of the pulmonary bleeding, pain, and suffering :-( that you have been going through and Hope that this finds you now healing and regaining strength. I am personally unfamiliar with the Vandetanib drug that you are planning to begin treatment with once you have recovered from your bleeding, hospitalization, and the flu. Is Vandetanib a Clinical Trial drug and if so, what phase Clinical Trial will you be participating in, is the Vandetanib specifically being used to target ASPS, and has the Vandetanib shown any documented success for ASPS patients thus far? There are so many new TKI type drugs currently being introduced and tested, and Hopefully they will lead to successful treatments for ASPS.
I am so grateful that you had the opportunity to enjoy a European trip to Spain and Italy with your parents and boyfriend, and Hope that the happy memories of your trip will help sustain you through the challenges that your disease have caused since your return. My very best wishes are with you for a positive and productive outcome to your appointment with your oncologist and radiologist tomorrow, and I will be anxiously awaiting your next update on their treatment recommendations. Also, if they haven't already been scheduled, it will be important to schedule your three month brain MRI and annual full body bone scan. In the meantime, take care dear Jen, feel better, and keep in touch as your time and the situation allow.
With special hugs, caring thoughts, healing wishes, love, and continued Hope,
Bonni
jenhy168
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Re: Jen from California - Dx 2009

Post by jenhy168 »

thank you Bonni <3

Vandetanib is an approved drug....called Caprelsa. So it's not on a trial. I've been on it for over a wk now...Due back for a follow up with my onco every 2 wks so they can monitor my heart w/ an EKG. So far not much side effects other than being tired and my stomach hurting from time to time.

I set up my bone scan for April 5th...I'm getting paranoid that there's something in my previously fractured right middle rib. I don't think it's fractured now, but there still is pain there...probably from coughing so much. There's calcification now too because I can feel that it's more pronounced than the left side. Re. bone scans - How accurate are bone scans? Is it pretty easy for radiologists to find something if there's tumor present? I know i have to get my bone scan thru nuclear medicine, where they have to inject me with something...nuclear... So I assume if a tumor shows up, it would light up on the scan and be pretty clear/apparent? I just don't want anything to be missed by the radiologists.
D.ap
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Re: Jen from California - Dx 2009

Post by D.ap »

Hi Jen
It's truly good to hear from you :D

My understanding is if anything significant in size and composite was to be found, it would light up.
Have any of your CTs showed the calcification ?
In other words has the rib not lighted up?
What info brought your onc to try Vandetanib?

Found this write up comparing cediranib and Vandetanib studies used in conjunction with RT. Vandetanib shows a little more promise in the 2 for success in treating tumors

http://jdc.jefferson.edu/cgi/viewconten ... inejournal

Love
Debbie
Debbie
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