Topic: My Surgical Report

Just a note after the doctor's follow-up this afternoon:

He walked in and said do you realize what a major surgery you had? I said no, I felt quite good.

1. On the right side of the large intestine a resection was done along  with
the removal of 12 lymph nodes. All was benign.

2. On the left side of the small colon was a Gastrointestinal stromal  tumor.
It was 10 X 9 cm and was sitting at the curved segment of the small
bowel, slightly puckering the bowel. It is called a Messenteric Mass or GI
stromal tumor. Very rare with only about 5,000 a year getting this type
of cancer.

He is going to contact Teddy's Oncologist (might as well stick to the best
with our rare cancers) and we will set up an appointment. He feels that
Dr. Cavalcant may order  a chemo pill, the 2 of them will decide. The
possibilities of a return are high, and will probably order a Scan in 6
months. A colonoscopy in a year....are we a pair or what????????????

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Surgical Report

Lainy,
The two of you are a pair. Rare people, rare cancers. Have you thought about buying a lottery ticket since it seems like your family falls on the side of one in a million? You should use this power for the good, and not just let cancers horde it.

Now, in my reading for cc, I know I came across something about GI stromal tumors and some new exciting drug that I thought whippee, I hope cc has connections with that. Let me go through my last weeks google searches to see if I can find it. Doctors LOVE when you harrass them with stuff you found on the internet. smile

Now you take care of yourself darling Lainy. Even your doctor was telling you how major your surgery was. I dont know about you, but I am sure the stress of the situation might cause be to need a whole day of pampering...medically needed of course.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My Surgical Report

Lainy...I just could not help myself and of course, I had to look this up. The prominent treatment by mouth appears to be "Imatinib."
I found a clinical trial:http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=410825&version=HealthProfessional&protocolsearchid=6907618
and this one:
http://www.cancer.gov/search/ViewClinic … id=6907618
but, you might find more when looking at the links if you chose to do so. 

Hugs coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Surgical Report

Marion,
I think that is what I might have been talking about since I have really been focusing my research lately on that category of drugs.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: My Surgical Report

Lainy,

Yes, ma'am, you must take care of yourself now and let Teddy play nurse. Once you are well enough, you and Teddy can get your costumes ready for Halloween-- Miracle Man and his Wonder Woman!

Patty

Re: My Surgical Report

Kris & Marion, thanks so much,excellent information. Most of all this ONC believes in trials. The Chemo the surgeon mentioned was Geneevec (sp) but the article I found was all about Imatimib. I am trying to absorb all this, not down about it at all as I am thinking he may not do anything but keep an eye on me for now. Maybe I will be one of the ones that it will not come back.
Would that be something if these 2 Cancers had a relation through chemo!!!!
Patty - What a great idea. I really mean it, as next Tuesday is T, 77th and I could have a T Shirt made for him "Miracle Man".  And my daughter decorates her house from top to bottom, its really something to see. She always makes a pot of (turkey) chili and I bring another dish. The munchkins requested make your own tacos this year.
Love you all so much!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Surgical Report

Lainy,

What is it with the pair of you and these rare cancers?? I'm hoping that you can take it easy for a bit, put your feet up and let Teddy take good care of you, I'm sure he will.

As always, my best wishes to you and tons of positive thoughts for you.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Surgical Report

lainy, lainy, lainy,

i had a big grin when i read the lymph nodes were benign, then...... :-( the big one showed up.  i'm so sorry.  x*# or however you're supposed to text curse words.  i was glad to read that at least the beast is out....

i'm with the rest of your gang, teddy can spoil you a bit now.  stress could have something to do with this you know?  take care sweet one.

barb h

Re: My Surgical Report

Thanks Barb.  Just out of curiosity I have been wondering about the stress factor. I hold in everything. I have been taking care of Teddy for 4 years now, and my mom who is 93 and even though she is in Assisted I run there and get called for everything. When I went to the doctor I forgot to ask him about that. Although when I went on the site I found for GI Stromal cancer it did not mention stress. I had gotten so wound up I have to admit (and I guess it shows I am a little resentful) that when Teddy's new spot showed up at the time I was diagnosed, and mom took another turn downward, I found myself saying to myself, "can't I even have some peace right now to heal!" Sorry, I didn't mean to ramble. Yes, everyone, my secret is out, I am not perfect!!!
I just had a thought. I win the lottery and do an around the world trip stopping to see my CC Family! Anyone can join me of course.......

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Surgical Report

Wow.  You certainly have a lot to deal with.  I can only offer a sympathetic ear and prayers.  Here is to hoping that sooner rather than later, your life will settle down!

Re: My Surgical Report

Kris,

I think one of the big lessons of cc is that we all HAVE to earn our MD credentials from the Internet because so many doctors are unfamiliar with this type of cancer.  Marion's fine internet research has now armed Lainy with an excellent set of discussion points for her appointment. Thought challenging questions help to figure out how engaged the Dr is (or is not) in caring for patients as well tells the Dr you are serious about your care plan and fighting the fight! I must say though - Marion you have some fierce research skills, do you give seminars?

Combined I assure you this group could challenge more than a few real doctors in a CC category on a Jeopardy game board!!

Bz

Re: My Surgical Report

OMG God, BZ here I go again. What a thought to have some members become guest speakers!!!  I love it.  Know what? T  & I are so lucky to have the best of the best in all our doctors out here.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

13 (edited by marions Thu, 22 Oct 2009 19:08:51)

Re: My Surgical Report

Due to the nature of the disease being that it is quite rare compared to the other more well known cancers; too little information is available.  It is my opinion that there is nothing similar to our discussion board where patients and caregivers inform, share, and support people from all over the world when touched by this cancer.  And, that is due to each one of you making up the discussion board.  The lack of information regarding this disease prompted Stacie, Rick and Sara to spent endless hours developing the Cholangiocarcinoma website, when Mark was diagnosed with this cancer. In fact, Stacie explains it in her opening remarks, in the History section.  My job as patient advocate is to inform and pass on to Cholangiocarcinoma patients everything pertaining to this disease and this information is gathered by attending the various conferences and of course, the multiple publications I receive, almost daily.  I am a long way off from teaching a course on the subject and that is why for example, I am attending the upcoming advocate workshop in Philadelphia.  Although, Stacie and Sara have attended with me numerous conferences, it is their behind the scene work having the greatest impact on the medical and research community at large. (It can

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Surgical Report

Lovely Lady Marion....we just love you. If everyone on this Board could see you in action and the determination and compassion that appears on your face they would all see as we have what an advocate we have on our side. P.S. I finally put my cause on F.B.  yesterday and was thrilled when 7 people signed up right away, true it was family but a great way to get our name out there.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Surgical Report

Lainy...you are something else.  Teddy, your recovery from major surgery and your continuous support on this site plus, recruiting signatures....you are one of a kind. 
Love ya,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Surgical Report

lainy, about that stress.....  plus there's more on the web site. 

http://www.webmd.com/balance/stress-man … -of-stress

sooo, you are trying to say that wonder woman might have a minor crack in her armor?  just teasing.  i have times when i feel like you.  after years of incest, then kidnapped, then a single parent when my children were 2, 4, and 6.   

post my cancer diagnosis, my oldest went through an emotional divorce, middle daughter had a stalker, my youngest (who we believe to be bipolar) was sent to jail and her son jaedon (who was almost 6 at the time) went to live with his so called father.  last dec. we took jaedon full time and he was diagnosed with bipolar while he was with us.  as much as we love him, he is very very difficult to handle and care for.  during that time, one of my brothers died from bladder cancer, i had a central line infection..... since then, jaedon's single mom has gotten pregnant (she's not married .... ), another brother was diagnosed with prostate cancer, and then my husband had prostate cancer surgery, my middle daughter has been going through a depression, my pain issues, battling blue x, and ........there's more but everyone is sick of my soap opera life.  i'm not complaining, it's just how it is... what the heck can i do?  plus, bless my husband but he is the world's biggest hypochondriac, i'm not kidding.  but i do get tired........ and i carry so much guilt for not being able to care for everyone and now i'm getting to where i just want to be left alone.    sorry.......wonder woman..... i'm on your side.

much love to you,
barb h

Re: My Surgical Report

dearest marion,

there are no words to express our thanks for then endless work you and your staff do for this "board."  it is truly a work of love and i hope you don't burn out. 

we have been graced by your big heart and the excellence of your research.  when i was first diagnosed, the john hopkins board had a few people posting.  it was all there was and it helped, but this site is extraordinary. 

thank you a gazillion times to the entire "crew."

with love and respect,
barb h

Re: My Surgical Report

Marion,

Just want to echo what Barb said regarding everything you do, you are indeed amazing!!!

And many many thanks also to everyone else here. What a great job everyone does!

My best wishes to you all

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My Surgical Report

Oh my goodness, Barb. What a life, I think its time to concentrate just on you! My biggest upset in life was when I was married to Brand Ex! Found out after 25 years he was a gambler and a cheat. But I always look at these things as having made me stronger even though I sometimes wonder if I want to be that strong. Teddy knew about him but didn't say anything to me until after we were married a year. I always tease him that he could have saved me a lot of grief if his cousins had stepped in!!!! (T is Sicilian) I have reached a point where I try to steer clear of toxic people. Of course with a younger grandson who has problems that are not his fault, someone had to step up to the plate. I commend you and am thinking you are a very strong woman, indeed!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My Surgical Report

Wow, Barb!!  What a lot you've had to deal with.  No wonder you get tired!!

Love Jx

"Time may be a great healer, but it's a lousy beautician."

Re: My Surgical Report

... & Marion (plus Stacie, Rick & Sara) ... a MASSIVE thank you from me, too!!

Jxx

"Time may be a great healer, but it's a lousy beautician."

Re: My Surgical Report

Thanks to all.  I in return thank each and everyone for your contributions to the discussion board.  To think that an illness such as Cholangiocarcinoma can draw the wisdom, compassion, caring, and support from such wonderful people.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My Surgical Report

lainy i was married to a liar and a cheat, but i only made it 7 years.  he is silician.... uh oh.  looks like you got the good one  :-)

my grandson is back with his mom...  he was doing pretty good, but he's acting out again...

thank you lainy for your support and thank you julia for the return hug.  you two are always there for everyone.... i'm hit and miss with this board...  it's going on 1 a.m. so i'd better hit the snore shelf.

love to you both,
barb h