2 1/2 years and it’s back
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Pam…My husband had Dr. Wellings for his liver surgery back in 2009. He was really good with us. We also seen him a few times this year but once he told us about the lesion on the liver and the swollen lymph nodes this past June he told us there was nothing more he couod do and for my husband to have chemo and said that it could be done closer to home. The U of M is 4 1/2 hours away other wise my husband would have had Dr. Z just like your daughter. He went through chemo in 2009 after his surgery and that was just in case there were cancer cells left behind. The he took Gemzar with the Xeloda pills and he did really well. This time around is kicking his butt and he’s only had 2 treatments so far.
The sugar did seem to help some. He was happy for the advice on that.
Today was the worst day so far. He had to take his antinausa pills were the time before when he had chemo he never had to take them.
Days like this his postivity is low. He starts telling me about the what ifs and what I am suppose to do. It’s so hard to set there and listen to him tell me things like this but also I know I need to listen. I try to stay postitive for him but it gets hard.
Thank YOu everyone
Shel,
I get the hiccups a lot since I have been on Cisplatin and 5FU. I agree with Pam that we use one therapy till it doesn’t work and then move onto another…never giving up hope….hope gives me peace and I trust that God will always take care of me.
LisaHi shel,
I feel like we have a lot in common. My daughter, Lauren has CC. We also travel to U of M for her treatments and doctors. Who are your husband’s doctors? Lauren’s oncologist is Dr. Zalupski. Her surgeon is Dr. Sonnenday. She was diagnosed with CC Aug. 29, 2011. She did go through a liver biopsy and said she will never have another one because it was so painful. She started out on Gem/Cis and also another drug called 5FU. She had a lot of shrinkage at first. Then it slowed down each time. Her doctor eliminated the Cisplatin after a long time because it is really hard on the kidneys. I don’t think any chemo works forever. You just use it until it doesn’t work and try something else. Lauren had radioembolization in May and we had huge hopes. It seems by the scans that it did not work and she has another 4cm. tumor. Lauren and I both think this is not a tumor and just a big dead spot from the procedure. Anyway, she is now on Xeloda and Oxaliplatin. She continues to fight and will never give up. She is only 26 and has a lot of living left to do!! I hope the Gem/Cis combo works for your husband. Lauren has been lucky with all of her chemos. She gets tired for a while, but bounces back fairly quickly. I know a lot of people have a hard time with Cisplatin. It is a tough one to take. Lauren did have to miss a few chemos because Cisplatin makes platelets take a nose dive in some people. But, a weeks rest usually brought them back up. It is hard to miss a chemo though. You worry about tumor growth when you can’t get it. I am sorry you had some probs at U of M. We have had a few minor things with nurses in the main hospital, but have had nothing but the best care in the Cancer Center. We absolutely love Dr. Z and Dr. S and feel they are doing everything possible to help Lauren to the fullest. I wish you nothing but the best and hope to hear from you again. Feel free to ask me anything. I am here to help.
Love, -Pam
shel….your welcome. Any good results with the sugar therapy?
I believe that you expressed a universal feeling on this board – we are glad to have found each other.
Hugs,
Marionshel….The Gem/Cis study is the largest study ever conducted on Cholangiocarcinoma patients and has shown to increase life expectancy in comparison to the treatment with Gemzar only.
In fact, the “Search Function,” top of page (enter Gemzar/Cisplatin or Gem/Cis) will lead you to numerous, previous, postings.
We have a saying on this board that “no one has an expiration stamp on the bottom of their feet.” Therefore, dear Shel, we try to stay positive mixed with a dose of realism and put one foot in front of the other.
The members of this site will stand by you. Stay in touch and feel free to ask questions and report concerns because, we are in this together.
Hugs,
MarionMarion…thanks for the advice. He just woke up again with them. I will suggest this to him.
Thanks
shelshel…the hiccups may be a side effect of Gemzar. A teaspoon of sugar may prove to be helpful.
Hugs
MarionI just noticed again while setting here tonight that he has had the hiccups for the 6th time today. Maybe its just a freak thing or can the chemo cause any of it? Just wondering if anyone else has experienced this?
Hi,
I was surprised too that they did not tell you about the result of the brushing.
anyway, there is nothing you can do now till the next Scan result and see what happen to the tumors and the lymph nodes.
The good thing is your husband still have the appetite,therefore just give him more protein like boost or ensure or soy bean milk,to fu ,vegetables and more fruit, lean meat like turkey,fish,and chicken to built up his strength.make sure he drinks at least 6-8 glass of water daily to keep hydrated especially the week he is on cisplatin. you may apply for social security disability benefit for him and get the disability using the date of 2 1/2 years ago as the starting date so your husband can quality right away for medicare and other benefits.
Keep in touch and
God bless.Well we just found out my husbands CC is back.
His doctor from th U of M here in Michigan called and told us for him to have a liver biopsy cuz they found a lesion on his liver. Doc said we could have it here at home. So my husband had the biopsy done on the 11th. I ended up taking him into the ER cuz he was in alot of pain. They admitted him, on Friday 13th(go figure) in the morning the doc here at home tells my husband that a brushing that the U of M did in June come back postivie for CC. The terrible thing is the U of M never let us know they did a brushing and never even called us and told us the CC was back. Our local doctor told us that if the U of M would have let us know he would have never had to go through a painful liver biopsy.
They ran some tests while he was there and found he had a bad infection in the liver and it was in his blood stream. They gave hime strong antibiotics to get rid of the infection. They also repeated the Ct scan even though he just had one 2 weeks prior to that. They found he has a few spots on his liver and quit a few lymph nodes are swollen and that some of lymph nodes were a little bigger then 2 weeks ago.
Now he’s back to chemo. He gets chemo on Tuesdays with one week off. They are giving him Gemzar on one Tuesday then the next Tuesday he gets Cisplatin for 2 hours then Gemzar follows. He just did his second treatment this past Tuedsday and he did pretty good with it so far. Just felt a little more tired today.
What I was wondering, does anyone know how well these 2 types seem to work?
They told us the chemo was to help him have a longer life but never give us any time frame. I’m just scared that this monster is gonna beat him.
He gets rescanned at the end of August to see if its slowing it down and shrinking lymph nodes.
I feel as we are fighting a looseing the battle. He’s continueing to loose weight and he still has a good appetite.
Just feel lost and trying to figure out what more I can do.
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