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Are the tumors themselves causing the swollen belly ? That is how it began with my wife. Her stomach was quite distended. The chemo reduced the size of the tumors which reduced the belly.
Also, we found Orgain to be a better tasting and more nutritious supplement than Ensure. If you can’t find it locally, you can purchase it online.
I echo what’s already been said. Great news. I am very happy for you. Please relax a bit and enjoy this special time. As you well know, you need to cherish the times that great news comes your way.
You have experienced the worst pain of this horrible disease. And yet you came back to this site to share your feelings as well as to offer console to others.
That is very special.
Please know we are hoping the best for Andrea and for you. I am familiar with the aggressiveness of this disease. As a caregiver, you can never relax. You have to stay focused on dealing with the reality of each day while looking for alternatives for improved response to this disease.
You have done so much to research all scenarios regarding treatments and trials. You and Andrea will make the right decisions as you continue your journey.
I wish I could do more to help both of you right now. But I want you to know Lynn and I will be thinking of you.
My (our) congrats as well. It’s a special landmark to reach the one year anniversary. You have exceeded all statistical data, in the positive way.
Enjoy your special time.
Carl and Lynn
What wonderful news as you start your summer.
I am very happy for you Lainy.
Thanks my friend. We provided the info regarding Losartan and its benefits with chemo to Lynn’s doctor. He immediately switched her from Lisinopril to Losartan.
It is yet another small step on the road to recovery. That is our new goal. Let’s take a small step each day that moves us closer to recovery.
Thanks for that info. I will look into this as an alternative to another biopsy.
I agree with Lainy. You may want to get a second opinion or even find a new onc.
Folfox is a standard chemo treatment. It consists of Fluoroucil (5-FU) plus oxaliplatin (like cisplatin) and folnic acid which helps the 5-FU work better.
Thanks for the information. I will look into Losartan. It will require discussion because Lynn is already on a blood pressure medication and has been for many years. We will have to discuss med conflicts, etc. But certainly worth reviewing.
Regarding Immunotherapy, as your research has probably shown, in several of these trials, a key inclusion criteria is that the systemic treatments (chemo typically) have proven ineffective. We have not crossed that point – and hopefully won’t any time soon. I keep looking at these immunotherapy trials as our next path. The difficulty is knowing Lynn will have to get even worse before consideration. Ouch.
Regarding targeted therapy, we have not yet done gene sequencing – but not for a lack of trying. At the start of the clinical trial a biopsy was requested for the trial research. We asked at that time to have enough sample tissue taken so we could go through gene sequencing. However, the biopsy was pretty much botched. Which by the way caused Lynn to be in incredible pain for weeks afterward. The trial sponsor was OK going forward without it. But we decided to delay trying another biopsy mainly to let Lynn recover. It is still in our plans, but now we have to settle things down a bit before we perform another intrusive procedure. We are already dealing with pain management and new side effects.
Regarding Folfox v. Folforinox. I did not ask this question specifically but I believe the decision to go with Folfox was based on the greater toxicity of Folforinox and that Lynn already had an allergic reaction to the very toxic cisplatin. Originally, the oncologist had suggested Folforinox for Lynn prior to us starting Gem/Cis. It was then we were told of the higher toxicity level. We opted to go with the ‘standard’ Gem/Cis which certainly was beneficial. I also know Lynn is at a point where there is not of lot of healthy liver and while her liver functions are still good, we cannot afford the possible toxic liver reaction.
Please keep sending ideas my way. I am the type of person who wants to know the next plan even while in the midst of the current one. And right now, I don’t feel comfortable that I am in that position.
P.S. I hope your and Andrea’s journey continues on a good path.
Our thoughts are with you and your family at this time.
Thank you for allowing us to become part of your family through your beautiful posts. You have an amazing gift of being able to express yourself so well in your words and in your tribute to your mother.
All our love,
Carl and LynnMay 29, 2014 at 8:32 pm in reply to: 2013 CCF Annual Report – The Cholangiocarcinoma Foundation and YOU #82651
Prunes, toast, AND a cup of tea??
That’s why they invented coffee my friend.
Hope you are doing well.
I would make a recommendation to anyone with this disease to at least start chemo until such time as the side effects make chemo too challenging. This is an aggressive cancer and the chance of chemo knocking it back for extended periods of time is very real. It won’t destroy it but will possibly extend your quality of life for a longer period.
And the side effects do vary for each person. You may find these side effects to be minor, or at least worth going through if the chemo is helping. Be advised, they are also cumulative. That is, during the first few infusions, the side effects may be minimal. But the longer your husband is on chemo, the more these side effects may come into play.
As I started, I would definitely recommend chemo until your husband finds it too challenging or not working.
Good luck with your decision,
Not good. The cancer has grown in and outside the liver. The lymph nodes, which had been contained by Gem/Cis such that they weren’t even showing, are now bigger than before. Lynn has pain in her shoulder and abdomen all the time. She is back on Oxy for pain. She is bloated from the liver growth. Feels terrible all the time. No appetite.
Man how things have gone downhill in a hurry.
As of today we are officially off the trial and will begin a new chemo regimen (Folfox) beginning next week. Hoping for another successful period of chemo so we can get back to where we were before the trial.
Options are starting to diminish unless we can contain this growth. From day one, however, Lynn’s cancer has been very, very aggressive and grows at incredible rates without chemo.
Having expressed the reality of the situation, I can still look back at almost exactly a year ago when Lynn’s condition was so difficult we weren’t even sure they would administer the first round of chemo.So from that perspective we are in a better position this May than we were last May.
What a beautiful message.
That is how your mother will be remembered…Living life every day to its fullest, loving freely and by being a kind and passionate person.
Thank you for allowing us to share this experience with you. You are a wonderful caregiver and supporter.