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John just had another round of chemo. It gets harsher every time. The first 2 days following were the roughest this time. Thank God for anti nausea meds and pain pills.
I have great hope he will go into remission with this chemo in the next round. If the tumors shrank so drastically with just 2 treatments hopefully they will be gone with 2 more treatments.
I have a question about chemo tho. Has anyone had any side effects of unreasonable anger toward family members?
John has been very argumentative (sp) and actually verbally abusive the last few days.
I’m wondering if this is something caused by the chemo or should I be calling the Dr. and telling her?
Thanks,
CharleneI thank you all!!! I think the constant need to be strong and capable is the most exhausting. If I show any fear or uncertanty (sp) John has a really bad day. We have been fighting this battle since 2005 and frankly I’m tired.
I love John with all my heart and I pray every night for him and all of you, have done everything I could find to do medically and now we just have to wait. I watched my Mother pass from cancer and every time I think of her pain and not knowing me at times, seeing things at times I just break down and cry.
Yesterday morning John said i was talking in my sleep. He said usually i have nightmares, which is true, but this time I said yes Mom.
It shocked me so much I just broke down and cried. I didn’t remember my dream which made me so very sad because I miss and need her so much now. I want to curl up on her lap and have her tell me it’ll be OK. I guess we all want our Mom in times like this.
Well I’ve decided you all will be my Mom! I can come to you for comfort and advice. I want to tell you all, even though we have never met, I have great love for each and everyone of you.
May God HEAL us all. Let that be our prayer everyday, I know it is mine.
Thank you all for being there,
CharleneThank God I’m not the only one with these feelings! I had such guilt about what I was thinking. I don’t blame John all the time, I think it’s only when he won’t do what the Drs. have told him to do.
When he gets nauseaus (sp) and I tell him to take the compazine for it and he waits and waits and complains about being sick. It is so frustrating when he can fix the problem and he won’t.
Sometimes I think he’s not all there mentally and wonder if it has mets to his brain, but then he’ll be just fine and do what he’s supposed to on other days.
I’m just so tired all the time. The fear and anxiety for John is just eating me up. I know he’s going to die but I want it to be as easy as possible for him.
He doesn’t want me to work but I have to, believe me if I could stay home I would.
It’s just so hard. I wish I had a very weak mind so I could lose it lol. Go to my special place and live there forever.
God bless you all for being here with me. I need each and everyone of you to help me get through this.
Thank you all,
CharleneI want to be happy for you and pray that it is true but my husband John had the same type of miracle. One day they just couldn’t find anything, not in his scans and not in his blood tests. He was in Hospice at that time.
The nurses gently tried to tell us that sometimes this cancer shows a remission for awhile. We didn’t want to believe it, we just knew John had been cured.
Six months later it came back with a vengence. It’s so hard to write this but I believe in being aware of everything that can happen.I so want to celebrate a cure but unless he was misdiagnosed, it isn’t gone.
When John and I found out it was back, it was worse than the day we were told he had cancer.I almost lost my faith in God. John just cried and cried. I will pray he has a long remission and that you aren’t disappointed in the future.
Hopefully he will get his transplant before it returns.
With love, hope and prayers for you and your family,
Charlene
Hi,
You know talking to the oncologist is the first thing you should do. Then Google chemo and you will come up with everything.I’ve learned SO much about this cancer and treatments just from the internet.
My husband John was dx’d in Feb.’05 so we’ve been throught the wringer.
Have the Drs. suggested Photo dynamic Therapy? It is used to kill the tumor in the bile duct itself. John had that done immediately then had stints put in. It cleared up his jaundice in about 3 days.
He then had internal radiation and stint changes every 4-6 months. Finally they put in titanium stints and he is now undergoing chemo. He’s getting Myoticin and zeloda. the first chemo was oxiplatin and gemzar. Those didn’t work at all but these new ones seem to be working.
You really need to google cholangiocarcinoma and learn all you can so when your Dr. suggests something you will know what the heck he’s talking about.
Also do not believe it if they give you a time line! They told us that John had 18 months to live and that was in ’05. We fooled em.Good luck and my prayers are with you.
CharleneSorry that you have to be here. My husband and I just found out his stints are open but the top of the biliary tree are completely closed on the right side and closing on the left. The Drs. are talking about external drainage now.
Ask your Dr. if that is an option. I hope it gets better for you soon. They gave my husband 18 months and he is still here and fighting after 3 years.
Don’t give up until he passes.
God bless you and yours, you will be in my prayers as is everyone on this board.
CharleneThank you all so much for the love and encouragement. They discharged John yesterday with oral antibiotics for the next 13 days.
He’s weak but improving. When he’s done we have an appt. to maybe insert a new stint inside the old one. If not I don’t know what the plan will be. I’ll keep everyone posted.
We love you all and pray for everyone every day!
CharleneWe are on the roller coaster ride of our lives. I went back to the hospital today and the dr. said John has turned the corner and the antibiotics are finally working, Thank God!
I don’t know where we go from here but I trust God knows. I want to thank you all for your prayers and know I pray for you all every day
I will keep you all posted since we are one BIG family here.
God bless and keep us all,
CharleneJohn’s stints are overgrown by the original tumor. I don’t know what is going to happen now.
The dr said no new stints and they didn’t remove the tumor because it would be dangerous for John’s health…if it wasn’t so sad it would be funny.
What do they think the tumor staying there will do to improve his health?I’m just numb. I can’t keep my thoughts straight anymore. I’m going to see if he can have Photo dynamic therapy again.
Please please pray for him. Pray for me to be able to find the answer.
Gods healing on you all,
CharleneDon’t give up. My husband has been fighting this for 3 years now and there are people on here who have been doing it for 8 years.
If you can get his Bili down he can fight this. My Husband had Photo dynamic therapy first to kill the Klatskins tumor then he had internal radiation. Both treatments are not that harsh and I believe they are why he is still around.
Where do you live? Our Dr. is in Los Angeles. He saved John! He was so yellow that the whites of his eyes were BROWN!!
Please if I can help you in any way email me.
I’m pretty good finding info on the internet.
Good luck and remember time is of the essence!
CharleneThe only thing I can think is that the stents are clogged. Did they do any type of treatment such as photo dynamic therapy or radiation when they placed his stents?
My husband had the exact same thing and it was because the stents were clogged. If your Drs. won’t help you, get another opinion. good luck,
CharlenePemmican is the word for ground up beef jerky. Native Americans discovered it was a great way to make beef soup and it kept stable and didn’t go bad, also easier to carry.
Just one of those things you learn in life. My heritage is Native American. Tastes great! Sorta like Tobacco(sp) chaw.
CharleneI am so sorry for your bad news. Everyday we hope and pray for good news and sometimes it just doesn’t come. I want you to know that everyone on this board will be praying for you and hoping for better times ahead.
May God Bless You and keep you in his arms as you go through this.
Charlene, Johns wife
Thank you all for your support and praise. It’s a very hard road we’re on and sometimes we reach the end of the string and snap. I think it’s good for us to do that.
It gets out so much of the anger at the cancer so we are more able to take the strain of caring for our loved ones.God bless you all.
Charlene
