1

(5 replies, posted in General Discussion)

Okay I'm going to try this again,

It concerns me when I post and no one csn contact , me, that could possibly mean no one has experienced what Gordon is going through.
Gordon had radiation , ended in March. He got really sick and we ended up in the hospital at MdA. The radiation onc said Gordon SHOULD NOT have any side effects of radiation. So when he got so sick he couldn't eat, stand the smell if food, weight loss we were shocked. So mar 15 ish he is in the hospital, developed portal hypertension and ascities. No one seem to think this was a big deal. Gordon lost 35 pounds ended up with an infection in his liver. All taken care of. It has been a hard road since then, too much to I into. But they said the tumor is dying, his tumor markers went from over 20000 to 182 and still trending done. But Gordon has portal hypertension and ascities he tske Los two different was pills and again we were told this should improve but,...????
What do y'all think???
His time is limited?? You csn live with a liver damaged like that? ( He had IMRT TREATMENT)

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(5 replies, posted in General Discussion)

Hey there My husband goes do MDA and he had a horrible horrible time with the leaking until they could change it Im saying that to say this...

I can help you with the drain but you will probably need to get the supplies at MDA. It will include a colostomy bag. you put it around the drain with the special adhesive. you dr at mda can get in touch with that dept to help you or go to the 4th floor and talk to the nurses. They saved so much grief for my husband. Please email me if I can help you any further. It will stay on and we wont have to worry about changing it so you can just keep her comfortable and enjoy this time as much as you can. Im so sorry your going through this. My email is hwomble@austin.rr.com.

Best wishes

Hey there it has been since March I posted anything.

First off I am thrilled we are still here, Gordon has been fighting for 18months!! It hasn't been easy though. He successfully finished IMRT treatment on March 5th, omg the side effect were horrible, he ended up in the hospital. He had an infection in his liver, they were able to basically suck out the infection and his fever finally went away in May!! yes May!!!

We just went to MDA and he had his three month visit and his tumor markers are dramatically down and still trending down, no cancer anywhere else accept this tumor.

So has anyone ever heard about possibly doing a liver resection after radiation?? The reason I ask t his is because the tumor is dead but it is just sitting there, still blocking his bile ducts, which he has a drain. He still has portal hypertension and still has ascities but tha ascities is improving. Anyone dealing with this, know anyone dealing with this? I really thought I would lose him within 6 months, well for one thing that is what we were told but things are lookin up the tell his liver is doing good but it is confusing when they say that and then he still has all these issues. feedback appreciated.

Just wanted to make sure yall saw it

Oh yeah he takes it, I make sure. Now today we were all off and we do the Tylenol and ibuprofen regularly too. I appreciate you helping....I think all cc patients are "special cases" because there is so much Unknown still. I need to just realize that...grrr

And yes as much radiation as he is getting near his stomach and his stomach is getting a little that makes a lot of sense.

Thanks, yes he has three different nausea pills and he gets his blood work done every week. They did blood cultures too so all of that is great! Were at the end of the treatment so maybe its just accumulating. Gordon is a "special case" they just rule things out. So when the drain is changed out on Tuesday and his temp doesn't go away then I sure hope it is just from the radiation because that would really scare me if we can't get this temp under control. He is 45 and was diagnosed a little over a year ago. He would get a temp from chemo but it would never get to 101. He has been on two different antibiotics this time...just weird.

Hey guys,

I don't get on here much, but I do check in occasionally. Gordon had a spacer put in in January and is now almost finished with radiation treatments (IMRT) He is getting 100gy in the middle of the tumor and like 90 something around it..we are being told it will kill it. He was doing xylota with it but he started getting a fever so they decided to just stop it since he was almost done. So my questions are...

If you have had this IMRT treatment, is it normal to have a low grade temp, to be so tired that your in bed more than out? and to be nauseous?

The reason I'm asking on here is because the dr said he shouldn't be having many side effects, it is really frustrating. Please don't send me links to side effects because I have looked. I am baffled because the doc said that and I have talked to one patient but I want to see if there are anymore of yall out there.

Also if anyone else has had IMRT I would like to know your story. The only way my husband could have this done is by the spacer they put in to protect the stomach.

Caroline,

Sorry it has taken me so long to reply, we have been in Houston(MDA)

Folfori hasnt been too bad...he has been on it since september and the tumor is shrinking. It makes him very fatigued, some nausea and it does drop the platlets. sometimes he has needed neutripen shots. Yes Gem/cis was a year ago, it is always the first attack on this cancer.  Also ask about the Tarceva pill to go with it, with some people it does have good results. Gordons ins at the time would not approve it.

Anytime,

Heather

my husband is also Dr javles patient and dr cranes as of today. We will see Dr. Aloia for the spacer to be put in. Dr. Crane said this is comparble to surgury, the outcome that is. What do yall think. They said IMRT will be better for his tumor. Gordons tumor was 8.8 and now it is 6.2...from Chemo. The chemo that worked was FOLFORI. But DR. J said he fears there is more cancer elsewhere because of how high his tumor markers are. His liver is a little damaged with a tiny amount of ascities. He was diagnosed Nov 27 2012 and he is still working and doing okay....I to would like to see miraculous heaing but I believe in Gods will and am thankful for all the time we have, Gordon is 45.

11

(13 replies, posted in General Discussion)

Good luck girl!!! Dr Javle is my husbands doc too we go the 18th or so. Big hugs from texas!!'

Heather

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(14 replies, posted in General Discussion)

I will pray for peace and comfort.

Hugs,

Heather

Wow!! You have been through it girl!! We are heading to Dallas as in a bit. I'm very curious about these Baylor Drs. My husband is going through Mda right now...and sometimes it seems like they are tip toeing around what they know but don't want to tell us... I am going to talk to my husband about getting another opinion. Gordon has a 8cm tumor in his liver local lymph nodes involved. Surgery wasn't a success in August but being re evaluated in a couple of weeks after chemo.

Glad your recovering okay!!! This is a roller coaster ride!!!!

Hugs and prayers to you!!

Heather

What is so frustrating though, is my husband had the genetic testing and then the insurance wouldn't pay for the meds because there wasn't any proof to show it would work. hmm we were so excited about the testing until we got to the insurance part. Just to refresh my husband is 45 w/ 8cm tumor in liver diagnosed a year ago. It's been chemo chemo chemo. No surgery yet and hoping that is what we find out in a couple of weeks but we don't have our hopes up for that just praying control. We have a 6 year old that has become a little clingy but we give extra hugs and honest reassurance. A lot of praying, nothing sweeter than a little one praying for cancer to go away wink

Heather

Hang on... And I agree when you do have a plan it does seem to ease some anxiety

15

(15 replies, posted in General Discussion)

Just to update,

we recieved some information in the mail yesterday, say enroll enroll in healthcare.gov like its all going to be okay!! I hope it is..... I called MDA asking them to please call me and let me know if they will just drop Gordon? or what will happen. They never called me back...basically the insurance will end on December 31st. but you can also go to a private insurance agency and get insurance, they cannot turn you down.

Im not much help...but just wanted to mention this

Heather

My positive news is my husband, Gordon was diagnosed Nov 2012 and the way the drs talked to us we didn't know if he would be here today. He is doing great! He is on FOLFORI, just had his forth round, they may do one more. He has been on gim/cis and xyolota and gimzar. They cancelled surgery in August but they reelvuate here in a couple of weeks. We hope but our lives are not wrapped around the words "yes he can have surgery" That was too much last time....Gordons live was just not in good shape but now hopefully that will not be an issue. But I feel it is a blessing that we are coming up on a year. And I pray we have many more!!

Heather

Hey Carrie,

I sent you a private message!! We may be at MDA at the same time, would love to meet up with you guys!!! This is so rare and I think it would be good to be in contact with families who are going through similar experiences...here is my email hwomble@austin.rr.com

Heather

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(15 replies, posted in General Discussion)

My husband is in the exact same boat, he also is with PCIP and no one can help us with this, because the government doesn't know what is going on. We enrolled and we are just waiting. My husband is actually going to back to work after short term disability has ended so he can get on works insurance. We still dont know if that is a possibity either....send me your email, mine is hwomble@austin.rr.com. I will send you info I find out and if you could do the same that would be great. I will try to help  you anyway i can...

Good luck!!...hugs

Heather

Thank you guys...he was giving the nurses a hard time in the infusion room today, we might need to start praying for them!! LOL

We know it is a roller coaster and yes we will enjoy the postive news. WE have a new normal now and we just have to make the best out of it! I think yall know what i mean!!

Hugs!

HMM where to begin, so Aug 20th Gordon went in to have a liver resection, surgeon said nope, his liver was in bad shape.

The next week we talked to Javle and Vauthey at mda. They are not giving up hope for surgery. He will be reelvaulated after the next chemo regimin

The chemo regimin was supposed to be FOLFORI AND Erbitux but the insurance wouldnt pay for the Erbitux so he has been on FOLFORI since the end of September. We are heading back to MDA on Nov 18th for scans, appt...yall know the drill...hoping for positive news.

Gordon had his stents removed and a drain put in, he has had no infections. The drain was very hard at first, had to be changed alot. But now my husband is doing amazing. He has lost alot of weight but isn't losing anymore and finally gaining some back...diagnoses 235 now 202. His beliruben is .4 never been this good.

After surgery we were doing alot of back and forth to Houston from austin for procedures for the drain. but discovered we are very happy with a IR in Austin. Very nervous about his next appt but at peace with whatever is said. We have adjusted some to this "new normal" And he hasn't had any pain, problems with the drain or fever in about 6 wks!! This makes this women very happy...priorities do change don't they?

Oh and with this last regimin his CA 19-9 was 27000 now its 6000 going on 4th treatment on MOnday...does this mean its shrinking?? this is good news right? I never paid attention to tumor markers really well on his last regimins....

Location of tumor the surgeon discovered tht the tumor is pushing up against his diaphram which is pushing up again his peracardium. They said it just needs to shrink a little...be we will know more in November.

Heather

Good luck to you, I hope this works out

praying

Mda does offer proton therapy for bile duct cancer but they do have to evualuate you to see if your a candidate

This relieves us in away to know the shoulder pain is related to the liver....Randi I knew what you meant, because I keep thinking...is it somewhere else? So unfortunely this is something I guess our loved ones deal with sad And I feel good to know that others have something on hand just in case.

This chemo cocktail must be pretty new, so guys lets pray it works and if it does remember the cocktail!!

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(32 replies, posted in Good News / What's Working)

hey guys!

I hope and pray that yall get the phone consults!! We love Javle and I mentioned this site and he commented that it is a great resourse!! Keep trying your right, it can be slow...we do alot of hurry up and wait at MDA but its worth it! Good luck to yall!!

ha! What did i do for excitement I schooled my 6 year old!! Apparently we didn't get finished so that is what we are doing this long weekend smile

Thanks Lainy, you such a sweetheart!