Topic: Sorry it's been so long

Hi all,

Thank you all for the emails, I am so sorry it has taken me so long to post.

Its been a journey and a half since the last time I wrote.

Dad is not doing so good right now and it is taking a toll on everyone.
Its very difficult to see someone suffer so much, or see someone who was once so strong and full of life weaken and appear to except defeat! ((WE LOVE YOU DAD IF YOU READ THIS STAY STRONG, YOU KNOW WE ALL LOVE YOU))

It is also hard to watch those around him suffer due to watching him suffer
(I LOVE YOU MOM, VENT TO ME ANY TIME) I KNOW you will read this!!!

Here is an update...

Last time I posted we had just left the ONC who told us they were cancelling Chemo because he could not see the tumour and that he obviously couldn't treat something he couldn't see. He sent us to another surgeon for a second (technically 5th) opinion!
This sugeon was very upset at the fact that the last hospital felt that my dad was unresectable and that he would certainly die within a year.
Thats the good news ...HOWEVER
We also found out that the first hospital didn't tell us that my dads bile ducts were blocked for such a long period of time (YOU KNOW WHILE HE WAS TRYING TO CONVINCE HIS STUPID GP THAT THERE REALLY WAS SOMETHING WRONG AND THAT IT WAS NOT JUST REFLUX, STRESS OR GALL STONES) anyways the blockage caused 3/4 of his liver to die!

The new surgeon and team, feel my Dad is a candidate for resection. Well at least so far. He will be reassessed next month.
He has had a drain put in and has been suffering because of it.
His spirits are down his hope seems to be slipping.
We are starting him back on the Pau D'arco tonight as he was off of it before and during this procedure. We are hoping to see an improvement and hopefully it will help alleviate some of the pain he has been experiences.
Then we are hoping to help him put on weight, he has lost so much weight and has no appitite.

I HATE CANCER

I hope to read some positive posts tonight.
I hope to hear of some success stories
and I hope and prey we all get throught this horrible horrible disease!

*  Bless
Michelle

The_Macks!

Re: Sorry it's been so long

Hi Michelle,
   I'm sorry to hear of your father's ordeal. I really hope he doesn't give up. My husband had his entire left side of his liver die from the obstruction in his ducts. It did reabsorb into his system eventually but he had an abscess form from the dead tissue that had to be drained. He actually had it obstruct his bowel for several weeks before they figured out it was an abscess and drained it. I'm just telling you this so you can be aware of that possibility and keep on top of it. My husband went through some rough times too while he was dealing with drains and sickness etc. but he has come through feeling great now so try to keep your chin up. There have been a lot of sleepless nights and tears for us too but there is always hope! I really pray that they will be able to do the surgery. You must convince your Dad to work to get his strength back and build up his immune system. That is really the most important thing for him to do now. I did a lot of research on foods and enzymes etc that help repair the liver knowing that my husband suffered damage from the original obstruction and then radiation. That is something you must do on your own because the Docs don't really believe in all of that too much. They aren't necessarily negative they just don't teach nutrition etc as a treatment or cure.. I know you have done a lot of research on nutrition but concentrate on liver health in particular not just anti- carcinogenic. Keeping what is left of his liver healthy is vitally important! Keep in touch Michelle and best wishes for your Dad and family!    Take care,  Mary

Re: Sorry it's been so long

HIi Mary,

Thank you so much for sharing your story.
My family just feels so hopeless right now because he has been suffering so much. It almost seems never ending.
I shared your husbands story with my mom and dad and Im hoping they will see that others have been down this road, suffered hell and come back around.

Dad was rush to the hospital last night his fever was 104.2 and he was in great pain.

His fever is down this morning and like you previously warned they think he may have an abcess.
They are scheduling an ultrasound and maybe cTscan for this afternoon.

He is feeling much better compared to when he was admitted.

Will keep you posted

How is your husband doing??

Michelle

Re: Sorry it's been so long

Hi Michelle,
   So sorry about your Dad. My husband is doing great.We have a small greenhouse business and he has been outworking me! That doesn't say much for me I guess since I'm 9 years younger and don't have cancer, but it definitely says a lot about him!! I have been reading so much here about people succumbing to this due to infections and it has made me so grateful that my husband was able to fight through the ones he had last fall. He really could have died from some of the problems that he had and it really wouldn't have been the cancer itself but the blood infection after surgery, the abscess problem and stent infections that could have done him in. BUT they DIDN'T and that's what you have to remember. He has been on antibiotics at least 5 times now since June, both oral and IV and they have always brought the infections under control. He hd a fever once as high as your Dad's 2 weeks after his surgery and I rushed him to the hospital 120 miles away from our house. I don't even fool around taking him to our local hospitals- I load him in the car and we head for Columbus! I tend to forget how stressful those times were because it seems like years ago but we all get through them! Just make sure that you are insistent about them draining the abscess ASAP. They kept treating my husband with Zofran because he was puking HUGE amounts about an hour after he would try to eat and we kept telling them that there was something very wrong. It seemed like NOTHING was going through. They finally did a cat scan after we got a hold of his surgeon and he was admitted and they discovered the abscess was closing off his intestine. Of course he hardly ate for weeks and kept losing weight and strength but after they drained the abscess he was much, much better and he didn't have any pain either. I really suspect that is the cause of your Dad's problem. Please be sure that they get on it immediately!! Anyway, sorry to ramble but I get to thinking about the hell we've been through and I hate to see others going through it too. Just know that it  IS possible to get through it and for your Dad to recover and feel well again!!  Please keep in touch. My prayers are with you!   Mary

5 (edited by TheMacks Sat, 31 Mar 2007 10:31:00)

Re: Sorry it's been so long

I just got word from my mom (I have a bad cold and can not be at the hospital) His fever is gone they have him on IV antibiotics and morphine for the pain.
They did an ultra sound and his tumour is now 2.7cm it used to be 3.5 so maybe that news will help get out of the funk that he has been in.

They are looking for an abcess, no word yet on weather or not they found  one.
Its coincedental though his procedure was two and a half weeks ago and this fever was so sudden. similar to your hubbies situation.

Keep you posted.

michelle

Re: Sorry it's been so long

I got this from the cancer Compass discussion forum. Also check with Dr. Andrew Kennedy at Wake Radiology in Cary, North Carolina. His microsphere treatments are shaking the cancer world. Also mayo Clinic has a liver transplant protocol that looks very good for the right patients. Here is a description oif a new drug called Davanat that is specifically for cholangiocarcinoma.

"They have a new drug, well according to the FDA it is even though it has no bilogical activity, that encapsulates the chemo drug and delivers its payload to the cancer cells. The drug is called DAVANAT after the inventors and they got this drug after their 4th try at making it back in 2001. DAVANAT is a carbosome and encapsulates the 5-fu. Go to the website and check out the video. Anyhow, the DAVANAT has an affinity for the Galectin-3 lectins which are overly expressed on 75% of all solid tumors. Well guess what, in phase I humans they had a 70% response rate. Are you surprized - probably not. Well now you will be - this was done on stage III/IV patients after 30 days. That is how quick this works. Now let me throw you the kicker. In order to get into this trial you had to be refractory to 5-FU and failed every other therapy. Now sit down - There are ZERO side effects.

They are in Phase II for colon cancer - they met their primary endpoint and stopped enrollment after 15 patients. They have 2 Objective responses and more coming. Think about the number and compare them to AVASTIN. On stage III patients AVASTIN has only a 1% ORR! vs 14% and climbing every month as more responses keep coming. Everyone is stabilized.

What does this mean for cholangio patients. Well DAVANAT works on a wide range of cancers including Cholangio. There are 2 compassionate use patients with cholanio and I believe both are alive. One person was as Oshner and they lost track of her after the hurricanes hit. I believe she is 100% better but no one knows for sure.

Here is my e-mail if you want to contact me to discuss this more --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- This board doesn't get too much posting.

In my opinion this is the best hope right now for all Cholangio patients. Cancer is all about the receptors not cocktails of chemo.