Jen from California - Dx 2009

[D.ap]

Hi Jen and Kiwi

HAPPY4th of July!

How are things going?
Thinking of you every day.
Write us a line when time allows.

Love
Debbie

[jenhy168]

Hi everyone~

Miss you guys. Sorry for not posting for so long. I have been busy dealing with stuff at home.

I'm still on sutent and due for chest CT scan and brain MRI next month in August. The sutent isn't doing that great, (my last scans in May 2014 showed little growth in size but no new nodules in the lungs), but it was still worth us staying on it for 3 more months to see for sure how effective the drug is.

In May, I also got my abdominal / pelvis CT w/contrast and leg MRI and everything was clear there.

July 4th was nice - just watched neighborhood fireworks on top of the high rise condo building I live in. Weather is nice, as always.

Since I've tried pretty much every non-chemo drug there is to try, if Sutent proves not to be effective anymore, my doctor suggest doxo? for a chemo option or another clinical trial where there is chemo and replacement of blood T cells that they treat then reinfuse me with the treated blood. I can't remember the details of this clinical trial, but if I qualify, they would draw my blood, treat it so it has some kind of receptor that's supposed to attack the cancer cells, then put me on 5 days of chemo, then rein fuse me with the treated blood. Then a blood transfusion is probably required later on as well. It would require about a 3 week stay in the hospital for this whole process. This clinical trial isn't available at many locations…only at UCLA, Sloan and maybe somewhere else…
Has anyone heard of this trial? Anyone have any thoughts about other chemo options like doxo something? We all know ASPS is pretty chemo resistant…

Ya'll are in my thoughts, and Kiwi says HI.
Jen

[D.ap]

Since I've tried pretty much every non-chemo drug there is to try, if Sutent proves not to be effective anymore, my doctor suggest doxo? for a chemo option or another clinical trial where there is chemo and replacement of blood T cells that they treat then reinfuse me with the treated blood. I can't remember the details of this clinical trial, but if I qualify, they would draw my blood, treat it so it has some kind of receptor that's supposed to attack the cancer cells, then put me on 5 days of chemo, then rein fuse me with the treated blood. Then a blood transfusion is probably required later on as well. It would require about a 3 week stay in the hospital for this whole process. This clinical trial isn't available at many locations…only at UCLA, Sloan and maybe somewhere else…
Has anyone heard of this trial? Anyone have any thoughts about other chemo options like doxo something? We all know ASPS is pretty chemo resistant…

Ya'll are in my thoughts, and Kiwi says HI.
Jen

Hi Jen

Its so great to hear from you!
Is there a link that we can look at the clinical trial?
I know that leukemia is being treated in somewhat the same way?
How often will the transfusions be performed and will you have to be separated from crowds?

Tell Kiwi hi from all of us too!

Love
Debbie

[D.ap]

Jen

This is an article that involved a young lady using a combination of chemos including doxorubicin.
Looks like she had used surgery previously on primary and other lung tumors and 20 years later had a reaccurence in lungs?
Then she used chemo?
I can't seem to read of her success any where in the article though.

http://www.researchgate.net/publication ... _treatment


Is the chemo being proposed because of the rebound that could take place coming off previous treatments?
Or are you experiencing bronchial intrusions with some of the tumors?
Here's a website that makes refefernce to TKIs, chemos ect pertaining to STS(soft tissue sarcomas).
I believe there is some reference to ASPS that maybe you and your doctor can discuss before your August scan.

http://www.uptodate.com/contents/system ... itle=2%7E3




Love
Debbie

[Amanda]

YAY
(((JEN)))

I am at UCLA a lot also right now doing stuff! Radiation dept for me for what looks like on an off for a few months...

I think my Onc at the Angeles Clinic brought this up and there are more out there now .. they are moving away from chemo in many ways an going towards the immune system an things like what you described more he said!
How totally cool!
Can Kiwi be there wit you?

I will be at UCLA over night in the 31st will you also be there?

[jenhy168]

YAY
(((JEN)))

I am at UCLA a lot also right now doing stuff! Radiation dept for me for what looks like on an off for a few months...

I think my Onc at the Angeles Clinic brought this up and there are more out there now .. they are moving away from chemo in many ways an going towards the immune system an things like what you described more he said!
How totally cool!
Can Kiwi be there wit you?

I will be at UCLA over night in the 31st will you also be there?

Hi Amanda! happy to hear from you!
Which doc are you seeing at UCLA Radiation?

Regarding the clinical trial - I still need to get my tumor slides tested to see if I have a certain gene expression, which will determine if I am eligible for the trial. So I need to request the slides from USC and I am lagging on getting it done because it's annoying to request things from docs/hospitals.

The next time I will be at UCLA will be in August…

*hugs*

[jenhy168]

Jen

This is an article that involved a young lady using a combination of chemos including doxorubicin.
Looks like she had used surgery previously on primary and other lung tumors and 20 years later had a reaccurence in lungs?
Then she used chemo?
I can't seem to read of her success any where in the article though.

http://www.researchgate.net/publication ... _treatment


Is the chemo being proposed because of the rebound that could take place coming off previous treatments?
Or are you experiencing bronchial intrusions with some of the tumors?
Here's a website that makes refefernce to TKIs, chemos ect pertaining to STS(soft tissue sarcomas).
I believe there is some reference to ASPS that maybe you and your doctor can discuss before your August scan.

http://www.uptodate.com/contents/system ... itle=2%7E3


Love
Debbie

Hi Debbie,

The transfusion will only need to be done once I believe - since the body will be weak after the 5 days of chemo and the rein fusion of blood process.

I think the chemo is being proposed because I've already tried most of the TKI drugs like pazopanib, sutent, temsorilimus, sorafenib…and probably a couple more that I can't remember the name.

My lung mets are just growing slowly in the lungs (growing a couple mm here and there every 3-6 mod)….no bronchial intrusions that I know of (i'm not even sure if I know what that is)….and no rebound taking place off of previous treatments.

Thanks for the links - I will read through them.

[D.ap]

Jen
I am so happy to hear of all the above!
If you look at Amandas post's, she is on the verge of the intrusion happening in her bronchail portion of her? ( Amanda help me out). As olga has stated that situation can make the tumor a possible non operational situation and only a chemo , Tki treated situation. I feel, as you should ,that you should always have options when possible and not have yourself backed into a corner. Be proactive in your treatment.

This brings me to my next suggestion.
Diet before your proposed clinical trial.
This is just a suggestion..
Do you have access to a ND or someone similiar?
You've been thru alot with the ingestion of various treatments and blood work would tell a host of problems that you could share with an ND.
I bet Amanda could share that with you.

http://www.cancer.gov/cancertopics/copi ... ints/page2
Give Kiwi some scratches for us



Love
Debbie

PS I kid you, not. 108 degrees fahrien heit here today
The good news is the rest of the week in the mid 80's <---- my face today!

[Amanda]

Hi Jen )
I will be at UCLA for the first of six procedures...
On July 31st an staying overnight.. then home unless there is a problem an i am of course praying all goes well an i will go home friday..
Come see me if you want to lol
I am seeing Dr Abtin do you know him?

I hope hun they let you in that trial.. but if they don't there are others like this i think .. have they said there were others also?

Have you ben getting outside? Its been so pretty out! I walked to the car to move out this morning at 11 AM an it was gorgeous out!

[D.ap]

Jen
Clinical trial link from NCI

http://www.cancer.gov/clinicaltrials/se ... d=13018194

[Olga]

Jen, you asked about what efficacy could be expected from the use of the doxorubicin regimens in ASPS - it is usually low with occasionally very rare cases when it was effective in shrinking some mets and even killing some others, but not all and resection of the rest of the mets was needed after the chemotherapy.
I just wanted to let you know. I came across this clinical trial for the new doxorubicin formulation:
https://clinicaltrials.gov/ct2/show/NCT ... cin&rank=5
I have no idea if it might be effective in ASPS.

[jenhy168]

Thanks guys for the advice and articles. Sorry I haven't updated in awhile.

What are the symptoms of brain mets / tumors?

I had my last brain scan about 6 months ago…and it was clear. However in the past couple weeks, I've been having a faint / dull headache starting in the mornings…which usually wear off during the day. Should I be concerned? Not sure if this is due to stress. Should I get another brain scan? Usually my doc has me get a brain MRI scan once a year.

Hope everyone is well.

[Amanda]

Hi Jenn
I just had a two cm tumor removed Hun get a MRI ASAP please
I fainted an a half a week later I woke up
I had dull head pain explained by so many things an al other signs explainable

Then they went away
An I skipped away like an idiot I am lucky to be alive an was on the hospital for almost three weeks


Please get the scan so you know it's not a brain tumor an I am in bed not well I had arm cancer that was also done omg can you even believe this!!!


Cover yourself do not wait like i did
I had to do surgery an there are much easier ways then that

Have you started a new medications?

I had other signs you maybe having like light sight changes an stuff

Typing hurts I'm sorry Hun I will post to you if you need me

Please scan do it for me also so I can smile an know you the other California girl is safe

Thanks guys for the advice and articles. Sorry I haven't updated in awhile.

What are the symptoms of brain mets / tumors?

I had my last brain scan about 6 months ago…and it was clear. However in the past couple weeks, I've been having a faint / dull headache starting in the mornings…which usually wear off during the day. Should I be concerned? Not sure if this is due to stress. Should I get another brain scan? Usually my doc has me get a brain MRI scan once a year.

Hope everyone is well.

[Bonni Hess]

Dear Jen,
I am so sorry about your recent headache concerns, and Hope that your symptoms are just stress related or from another benign easily treatable cause. However, to err on the side of caution I strongly encourge you to heed Amanda's hard earned advice and schedule a brain MRI as soon as possible. When Brittany was diagnosed with brain mets in 2004, she had been having morning headaches which seemed to dissipate and resolve during the day. We were later told by her neurologist that morning headaches are a classic symptom of brain tumors. I certainly don't want to alarm you, but it is better to be safe than sorry in being vigilant with your scans, and any symptoms should not be ignored and immediately discussed with your oncologist. Also, be aware of any other possible symptoms such as dizziness, vision problems, numbness in your extremities, loss of balance, etc. Do not allow your oncologist to tell you to just 'wait and see what happens" before ordering the scan, and don't accept having just a brain CT as they are proven to be inadequate in finding ASPS brain mets at their smallest most treatable size. Take care dear Jen and keep the Board updated as you are able.
With special caring concern, healing wishes, and continued Hope,
Bonni

[jenhy168]

So I should get a brain MRI with contrast, correct?