1

(2 replies, posted in General Discussion)

Just got my September issue of popular science. Go buy it or find a link to the story on page 35. Deals with liver cancer and a new drug that works for liver cancer patients. Its called ALN-VSP therapy. It worked on 62% of tumors in 19 patients. It cuts off blood flow to the tumor and should be available in 2 years.They are planning on another study so I would be pounding on there door to get in.

Biotech Company Alnylam

Another source of info is John Rossi
City Of Hope National Medical Center
California

If this is not B.S and it works as good as they say, why not give the worse patients a shot at this.

Tom

Kris

Just wanted say hi and tell you that your post here have me a big ol smile! I love your sense of humor.


Thank You


Tom

My dad had gull stones several years before he was dx with cancer. Looking back at photos and plotting the time of when I thought his cancer started, he looked puffy in the face.
Never sick before that.
In my opinion, it was either enviromental or thoses stones.

Tom

4

(17 replies, posted in General Discussion)

Hi Kris

I haven' t posted here for some time. I am sorry to hear about the tumor. Have you thought about Theresphere?
My dad had the chemoembolization and we found out later that it did kill some of the tumor.

Tom

John

I did alot of research on Dr Geschwind. If I had C.C, thats who I would go see. I think your in good hands.
My father had the same procedure as you. It killed most of the tumor. I feel the mistake he made was not to keep on attacking it with treatments, chemo. etc...His treatments were at Mayo in M.N. In my opinion, they were not aggressive enough.
We were set up to go see your doctor and it just didn't happen. If you can handle the treatments, keep on it. I think your on the right track.

Tom

6

(18 replies, posted in General Discussion)

Hello

While researching ways of stripping rust off old cars for restoration I found several types of acid that works. One is sulfric and the other is Phosphoric acid.

Guess which one is in soda?????????

Now after looking at how to safely use these acids I fould a article that said people who drank 2 or more sodas a day had double the risk of kidney cancer........... If I can find the article I will post it.

Tom

There is also a article in Popular Science, June issue.

Tom

My Aunt sent me this link.

http://www.cbsnews.com/stories/2008/04/ … age4.shtml


Tom

9

(20 replies, posted in General Discussion)

Hello

I have the same question.

My grandfather died of bone marrow cancer and had a stent in his liver also. Had a very high iron content.

20 years ago I remember asking my dad about the rust looking stuff on his feet. Looked like it was migrating up his legs. Darker at the bottom and lighter at the top. Got much darker as time went on. My dad was dx in april 07 interhepatic.

After his dx I was checked for liver function and found my iron content was around  450. My dads was 600. I also have the rust looking stuff migrating up my legs.

After researching more I found my grandfather had the same stuff on his legs. My brother has normal iron content and no rust on his legs............

I thought Hemochromotosis ( Spelling )?  They checked me for the gene and found that both my dad and I do not have it. I found they only check for 3 genes but if I remember, 15 different genetic defects that can cause this.

Tom

10

(19 replies, posted in Chemotherapy)

Hi Jeff

I know that lack of iron will cause someone to be anemic but low platelets will cause the same thing??? I need some schooling on this.

My dad and I have a hi iron count. His is 600 and mine is something around 450. They checked us for Hemocromitosis ( spelling? ) but nothing came back. Clean bill of health for me.

My question is can blood from someone like me help you?

Tom

Thank you Colleen.

I started reading up on Dr. Geshwin based on your results.  I hope we can get something close to the same reduction as your husband.



Tom

Thank you Sophie,

I'm glad things went well for you.

Just looking down the road at some options if there are any. My dad has been on Gemzar and Xeloda and his CA19 number went down from 1443 to 883 in about 2 weeks. Not sure what to think about that. During all this he had an infection due to a plugged stent. He has stopped the chemo and is on antibiotics now until the fever goes away. I hope he gets that cleared up so he  can get back on track with the Chemo before his cancer no longer responds to it.

We have a meeting with John Hopkins next week to see Dr. Geshwin. Has anyone had any experience with him? I think they are going to offer him something like the TACE program.

My dad is not really a computer person. I would like to find him someone that he could call and talk to about positive treatments and this disease in general over the phone.
The reason I wanted to bring this up is this:
If you ask a doctor, son, daughter or a fellow cancer patient their opinion, you may get 3 different answers made for different reasons.  I.E. clincal data, emotion, experience, all of which are important and are needed to answer your questions.
If there is anyone out there that would be interested in this, please email me your phone number and a good time to call and I will pass your information on to my dad.
I would like our website to offer a phone support for the non-computer people. There is something to be said for that one-on-one conversation.

Thank you

Tom

13

(14 replies, posted in Chemotherapy)

Hello Tanoland

My dad is on the second week of Gemzar and Xeloda. He has not lost his hair but is tired and feels a burning feeling on his skin. All in all not too bad so far.
His CA-19 has went from 1400 to 883 in 2 weeks. Not sure if we can jump up and down yet.
Maybe Jeff will chime in here but if the tumor marker drops, does that mean its working? Also my dad has lost 10 lbs in 1 week during this chemo.

Tom

Hi everyone,

My dad was diagnosed about a year ago with intrahepatic ccc.  His tumor is quite large and he was told that it was inoperable.  He tried chemoemobilization without success and has had to have his stent replaced every six weeks or so.  This last time the doctors at Mayo placed 2 stents and after just a few days his usual symptoms reappeared.  He recently had a scan that showed lesions on his liver and is planning on taking chemo to hopefully keep the cancer from spreading.

My question is, have any of you had results with systemic chemo?  If so, what type of chemo did you have and how severe were the side effects?

Thank you so much for sharing your information.

My thoughts are with everyone on this board struggling with this ugly disease.

Tom

15

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

Hi Kris

That is great news !!!!!!!!!!! 

Tom

Great news Becky!!!

Tom

Hi Becky

sirspheres and therashperes. What is the difference?

Thanks

Tom

Thank You

Tom

I guess they plug part of your liver prior to surgery forcing it to grow. Has anyone had this done and what was involved? How risky was it compared to the actual surgery?
From what I read, it will grow up to 15 to 20% on one side which will decrease the chance of liver failure after surgery, I hope.

Thanks

Tom

20

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

Looks like some in the UK are having good results in liver resection. I am not sure about the type or even if this is pertains to Cholangio but I thought it is worth reading and finding out whom over there is doing these surgerys. By good results I mean making it thru the surgery aft they are cutting off 75% of your liver and your still doing ok, that's a good thing.

http://www.netpatientfoundation.com/for … p;topic=11


Tom

21

(4 replies, posted in Adverse Reactions & Side Effects)

Thanks everyone.

I will pass this info on to him today.

Tom

22

(4 replies, posted in Adverse Reactions & Side Effects)

My dad had his stents replaced and the itching has not stopped. He is going on 9 months since dx. Do any of you have any ideas on what a person can do to stop the itching? He tried Benedril and didn't work.

Is this what I should expect towards the end?


Thanks

Tom

23

(2 replies, posted in Suggestions)

I would like to add to Kris post if anyone thinks it would help to split it up into Intrahepatic and extrahepatic.  This would be helpful if the treatments were different for each type???  Not sure, just brainstorming.

Tom

24

(43 replies, posted in General Discussion)

Good morning Jeff

According to my wife ( Computer Geek ),  our board will not allow me to paste the entire link. You have to carefully highlight those numbers and paste into your address bar.
I am able to cut and paste the entire link into email if it doesn't work for you.
Let me know if I can help.

Tom

25

(7 replies, posted in New Developments)

Cherryle,

I posted a link under the "Experiences" section today.  The link is to the Johns Hopkins forum where some people have posted info. about the outcome of recent surgeries that Dr. Canady performed.
Tom