(pheriphal) P-NET - Ewings - HELP

kytallgirl · New User Joined: 28 Jun 2008 Posts: 9

My sweet daughter-in-law (22 yrs old) was diagnosed about a month ago with what appears to be (pheriphal) P-Net. I can't seem to find alot of information on this cancer but what I HAVE found is not encoureging. I'm trying to find others who have been diagnosed with this or knows where I might find more info.

Oparation was not seccussfull as the mass is wrapped around a major artery going to small intestines. It has completely engulfed a kidney and has left it non-functioning for how long we don't know. The scary part of this aside from the obvious is that the PET scan they did before starting chem measures 15 x 12 1/2 INCHES!!! I cannot get my head around the SIZE of this mass! Has anyone ever heard of a mass that large and what it means as far as prognosis goes?

We have all been praying for a miracle here as we are ALL believers in God. It's so very hard to give it all to Him and just wait to see what He will do with this illness where she is concerned.

I really need some answers here so please, if anyone can talk to me it would be a true God send!

My heart goes out to all of you out there fighting and when I pray I pray for EVERYONE! It's not something I ever expected to hit so close to home!

God Bless you all and thank you,

Sherron

ksplat

Dear Sherron

I am so sad for you & sad & sorry to hear about your DIL's cancer diagnosis!

I too will hold you up in my prayers. This illness that brings us together here is not something you can ever prepare for!

Unfortunately, I am not familiar with this diagnosis & pray another member with more knowledge will be able to answer your questions.

I am offering you my support & will keep you & your family in my prayers & thoughts.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

Sherron, I am so very sorry about your DIL's cancer. PNET is a very rare cancer indeed with only about 200 new cases a year in the US. Your DIL is also a little old for this generally thought of as a "childhood cancer." Its size sounds overwhelming. I cannot begin to imagine what you are going through.

I do not know what her prognosis is and its size may be a big factor. My advice is to talk to her medical team about this. Whatever her prognosis is, you will have to try to learn how to live and enjoy one day at a time.

You and your daughter in law are in my thoughts and prayers. Keep us posted.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kytallgirl · New User Joined: 28 Jun 2008 Posts: 9

GM Angie & Jim...thank you so much for the reply. I have read that this is a child hood cancer so I beleive she has had this cancer for quite some time now. She is not a complainer so it's easy for me to understand how she may have been having symptoms (miagrains, chest pain, trouble breathing) but not say anything and just think it was nothing. Still it's hard to understand how she got so sick so fast. One week I was planning to visit them on my vacation this year...the next week Jess is in the hospital...then it all went south from there so to speak.
Jess and Cory are in good spirits most of the time. They have given this terrible disease over to the only person who can truly heal her...our Lord and savior Jesus Christ!
I appreaciate all the thoughts and prayers spoken in Jessica's name. It means so much to her to know that so many people care!

God Bless,

Sherron

brainman

It may be that she has had this cancer for a long time but that it only started creating problems now? What kind of treatment will she be receiving?

I do hope and pray for your daughter in law.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kytallgirl · New User Joined: 28 Jun 2008 Posts: 9

Jess went to the ER last night w/ trouble breathing...they hydrated her & she seemed to feel better. I happen to call and catch them on the way home & actually got to talk to Jess on the phone! What an unexpected blessing that was! Honestly, she sounded great...she is just the most couragous person I've ever known! She talked about her weight lose...45 lbs down so far...her inablity to keep anything on her stomach...though Smoothies seem to stay down best... Wink

...but she was happy...she & cory (my son) were going to go home and hang out. Jess talked about how they take the "good" moments and make the best of them & don't always dwell on their rare perdicament. This is their life now...their "journey" as they call it and they will live it according to God's will. They are truly an inspiration to all of us.
On to the science part of it...she is scheduled for 48 weeks of aggressive chemo...b/c of her age they feel she can handle it. She has had one round & was extremely ill as was to be expected...her next round is next week. I've read that this cancer could have started in the womb with a badly mutated chromosome or it could be heriditary...who really knows right?
Thank you all for letting me go on but there is so much to learn from those who truly "live like they were dying".

Sherron

ksplat

Dear Sherron

I wanted to mention to you that with your DIL's weight loss & sickness from the chemo you should have a look at the thread here for "nutritional suggestions"(if you haven't already!).

You mentioned that Jess likes smoothies & I know there are suggestions here from other members on different "smoothie type" drinks/shakes.

Thinking of you & yours.

Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman · Posted: Tue Jul 01, 2008 12:56 am Post subject: Re: update

[quote="kytallgirl"]Jess went to the ER last night w/ trouble breathing...they hydrated her & she seemed to feel better. I happen to call and catch them on the way home & actually got to talk to Jess on the phone! What an unexpected blessing that was! Honestly, she sounded great...she is just the most couragous person I've ever known! She talked about her weight lose...45 lbs down so far...her inablity to keep anything on her stomach...though Smoothies seem to stay down best... Wink

...but she was happy...she & cory (my son) were going to go home and hang out. Jess talked about how they take the "good" moments and make the best of them & don't always dwell on their rare perdicament. This is their life now...their "journey" as they call it and they will live it according to God's will. They are truly an inspiration to all of us.[/quote]

It is fantastic that Jess and Cory are dealing with this in such a healthy way! It is a journey... painful at times but also with opportunities to develop long time good memories.

[quote]On to the science part of it...she is scheduled for 48 weeks of aggressive chemo...b/c of her age they feel she can handle it. She has had one round & was extremely ill as was to be expected...her next round is next week. I've read that this cancer could have started in the womb with a badly mutated chromosome or it could be heriditary...who really knows right? [/quote]

There does seem to be a strong genetic component to PNET... especially Periphrial PNET (Ewing's sarcoma). However, whether or not this gene is inherited, to my knowledge, has never been demonstrated.

Sherron, you are more than welcome to post as much and as often as you wish. You can even become our resident expert on this rare form of cancer Wink

.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kytallgirl · New User Joined: 28 Jun 2008 Posts: 9

Jess has been able to keep food down since Wed! We give all glory to God! Also, a visit to her Dr. revealed that the mass may be shrinking! He is basing this on how her stomach felt during this exam. Seems he is "feeling" soft tissue and this could mean that her organs (having been pushed to the other side of her body) may be moving back into place. This could mean that the mass is shrinking! We are over joyed at this prospect! She has a very long road ahead but the small victories are just so BIG right now. She will start another round of chemo next week (5 days straight, 3 hrs each) and we are praying for her to get thru this with minimal discomfort.
I continue to keep you all in my thoughts and prayers.

Sherron
DIL diagnosed with (pheriphal) P-NET April 2008

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