Chemo or Not
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Hi Johanna!
I also had Gemox, but 13 rounds, and now on Gem+Xeloda. Tumors shrinking. BUT it took some while before they started shrinking!
I also had 4 chemoembolizations, and the third one in january was the one that had real good effect.
SO, keep on fighting and donHi Johanna, and like all else sorry you had to find us. I am a CC survivor, cancer free for 2 years. My miracle was a liver transplant. The Mayo Clinic is very pro-active about transplantation as a CURE. Make sure you discuss this with them, because there decision if you are or aren’t a candiadte would be non-biased.
I have so many miracles during my cancer journey please read my story at thetelegraph.com under christmas miracle. There is HOPE!!
Lots of prayers-CathyJohanna…. You fight this cancer. The cheering squad is right behind you. Good luck with the upcoming Mayo visit and fingers and toes crossed for the next MRI report showing increased necroses of the tumor. You go, Johanna.
All my best wishes,
MarionHi Johanna, its so good to see you again. I am very curious as to why you felt uncomfortable about Cyber Knife. It is quick, easyier than most anything else, painless and gets right to the spot. You are a good example to others as to why other opinions are so important and I love your attitude. I think Mayo is an excellent choice Good luck on your upcoming MRI and please keep us posted.
Hello Again,
I feel the need to introduce myself again. I was diagnosed with CC on 10/26/10 (unresectalbe intrahepatic).
I have had 6 treatments of gem/cis and 4 weeks of radiation with xeloda.
I was suppose to have cyberknife but just did not feel comforable.I made an appt. with Dr. Pawlins at Johns Hopkins (he said no surgery). I then had a chemoembolization treatment by Dr. Geshwin (I had a very long recovery with a hospitalization at Christiana in Delaware for a high bilirubin).
I had one MRI at Hopkins that showed some necrosis of the tumor. The next follow up appt. for an MRI is June21st.
I just made an appt. at Mayo Clinic in Rochester with a Dr. Queveda in medical oncology.
I refuse to roll over and lay down and die from this cancer! The interventional radiologists at Christiana Hospital did not want to give me chemoembolization because they said “it would not help”. Well, they were wrong.
I want to live, I am 59 years old. Any other suggestions from you wonderful people would be helpful.
PS My blood work is good. My C 19-9 was normal until I have the chemoembolization.
Thanks in advance for your help. Sincerely, Johanna
Hi CBY1, it is not unusual to have some hitches along the healing path of CC after a Whipple. Leakage, fistulas, digestive tract. But eventually it all heals and your Dad can get on with his life but under the watchful eye of an Oncologist. THe best you can do is give him your encouragement and love, which I know you are already doing. Please keep us posted on his progress.
Thank you all for your posts!
It is very encouraging to read your advice and hear your stories.
My dad is 72 years old, and otherwise healthy. Recovery from the Whipple took longer that we had hoped….he had a postop leak and prolonged hospital stay. He is finally back to normal so I understand his fears and do not want to push him to do chemo especially if it will compromise his lifestyle.
However, I cannot help but worry about what’s to come. It is especially challenging for me since my parents live in Malaysia. I read about all the clinical trials and options for patients with CC here in the US, but we are limited to what we have where my parents live because of financial and logistical issues. However, with God’s blessing, my dad will hopefully continue to do well and be able to fight this battle with CC for awhile….Hi Cby1,
Welcome to the site. Sorry that you had to find us all but glad that you have joined us here. You have come to the right place as you will get a load of support and help here from all of us. That is great that your dad was able to have his whipple op and that he has made a great recovery as well.
I can’t really say too much about chemo as my dad never had it, turned out that he couldn’t have it anyway. But I so agree with what the others have said that it should be up to your dad to decide if he wants to have it or not. In my dads case, his CC was deemed inoperable from diagnosis and he could have had chemo as his treatment if he wanted that. But he wanted to have the best possible quality of life that he could so he went for PDT rather than chemo as the side affects of PDT he felt would not be as much as the possible affects from chemo. It was his choice and I supported him fully in that.
I hope that you keep coming back here and please feel free to ask any questions that you will have. And please let us know how your dad gets on.
My best wishes to you and your dad,
Gavin
Hello-and AMEN to PCL’s post. I am a CC survivor, I was lucky enough to be put in the care of doctor (Dr. William Chapman at Barnes-Jewish ST. Louis, MO) who believes a transplant is and should be an option for inoperable CC. I did chemo and radiation first. I also was able to function during treatment, my chemo/radiation buddies were there for more moral support for me and them. Any nasuea was treated with meds and tiredness just required more naps and rest.
My treatment did not effect my life enough to not consider it as an option, to continue my life.
Lots of prayers and HOPE-CathyHello and a warm welcome from me also. There is not much I can add to the what has been mentioned already only, that I would consult with a few physicians treating large volume of CC patients. There has been a shift in adjuvant therapy.
All my best wishes
MarionHi,
It is truly up to your dad to decide to have chemo or not.
How old is he?
Does he want to be on chemo continuously to prolong his life ?(ie; until disease progress or untolerable side effects occur)
it is a very difficult decision but each patient is different on how to cope with the disease.
For myself , I am a stage II patient,even Gemzar alone for 14 months was not a picnic, I did not lost any hair ;I did not have serious N/V issues ;I drove home after I had my chemo every week after work;I went to bed right away; I spent the next 2-3 days at home to relax;and I went back to work.
It is the process of going to have chemo every week ,knowing that there may be no end in sight for cure that makes me think twice ,is it worth to do this?On the other hand ,I only have one live to live,may be if I try my best;to be on different treatment plans that related to CC and learn as much as I can,and telling other people;then may be one day God will show grace on me again.(He already did)and find the cure for all of the CC patient.
After I stopped the Gemzar for 6 month,my CC comes back and now I am going thru the same process for re-resection again in July.
You can read my story on the radiation forum on this web site
“RFA and chemoembo-a case study of myself” to learn more.CC is a long and winding road,no easy way out;knowledge and courage are needed for patient and caregiver to negotiate the benefit and outcome.
God bless.Hello SBY1, welcome to our wonderful family. I am so happy that Dad went through the Whipple and is on his way to recovery. My husband had a Whipple in August of 2005. Then came the age old question of to Chemo or not to Chemo. We actually talked to 5 different Doctors who all agreed not to Chemo. Teddy was 73 at the time. He had all clear margins but they honestly felt that with his type of CC and where it was located (contained in the bile duct valve) that his only form of treatment if it returned could be Cyber Knife or maybe some radiation. Perhaps your Dad’s age might make a difference and then again it is a choice that should be made by him but along with knowledge from the doctors. Teddy had visits to the ONC every 3 months along with LABS. Here and there some PET Scans were thrown in. Chemo is a hard and personal decision to make. Perhaps you and dad can sit with his ONC and discuss it further. Best of luck.
I got some guidance from a digestive diseases onc, who read the final path report, noted the writer’s comment about some aggressive tissue being removed, said there wasn’t a lot of data, but recommended 6 months of Gemzar for me. If you don’t have the final path report, get it and let it and someone who can interpret it be your guide. Gemzar alone isn’t too bad, Gemzar/Cisplatin is an entirely different deal, however, BC Cisplatin is one of the most toxic of chemo agents.
Again, I wouild suggest contacting a very knowledgeable onc to help you decide. BTW, my surgeon recommended no further treatment, then modified that after talking to the onc.
Hello Everyone!
My dad was diagnosed with CC in January and had a Whipple in March.
He is finally back to baseline, and has decided not to have adjuvant chemo since data is inconclusive.
I cannot help but feel that chemo is worth a shot to prolong time to recurrence. At the same time, I understand that my dad values quality of life and is extremely concerned about the side effects of chemo.Thoughts?
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