mcwgoat

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Viewing 15 posts - 241 through 255 (of 298 total)
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  • mcwgoat
    Participant

    Thanks Marion. I do try to stay active by walking every day and using my stationary bike at home. I’ve been trying to eat what they call “clean” foods which is foods at their most natural environment with little to no chemicals/pesticides. I’m fortunate to live in an area where I have access to a lot of locally grown fruits and vegetables which is great for this time of year. I eat mostly fruits, vegetables, beans and nuts – all in small portions so my digestive system doesn’t act up! I do eat some fish and a little chicken and once in awhile I get a craving for a good hamburger or steak so I go for it since the craving is not that often – was never a big meat eater anyway. Hardest thing for me is staying away from chocolate!!! I love my Hershey’s Milk Chocolate Bars!!!

    I will ask my doctor about the enzyme. That could be the key to helping me with the digestion and gas issues.

    Thanks,
    Mary

    in reply to: LY2801653 clinical trial #70369
    mcwgoat
    Participant

    Hi Kris,

    Hope you got a good night’s sleep after such a long day yesterday!!! Glad today won’t be as long for you!!! Stay strong and keep your positive attitude. I know we will be hearing good things from you!!!

    Mary

    mcwgoat
    Participant

    Hi Marion,

    Thanks for the response. I thought if you had any of the restrictions for the trial you would not be a candidate. Because it said “Patients may not have had prior radiation to the affected area.”, that made me ineligible. I had prior radiation. Also, I recently found out that my original tumor that was wrapped around my celiac trunk (with lymph nodes involved) and was “killed off” by radiation last year is now showing some activity again. This is along with the tumor that is at the junction of my bile duct going into my liver and extending into the liver on both the right and left side of the bile duct in the liver. So I’m wondering if all this might make me ineligible?

    Having said all this, I am doing fairly well. I have never been jaundiced, no issues with dark urine or pale stools. I do have some moderate abdominal and back pain which I have pain med for but have not used it yet. Also, I have had to start eating smaller meals because if I try to eat a larger meal I get a lot of gas pain. I also started noticing that I get tired a lot easier the last month. I am starting to listen to my body and take it easy when I feel fatigued.

    Marion, thanks again for taking the time to respond to my post and thank you for all you do for the Cholangiocarcinoma Foundation!!!

    Mary

    mcwgoat
    Participant

    Hi Gavin,

    I watched Dr. Ferrone’s presentation a while ago but the trial hadn’t started up yet. Thanks for letting us know it’s now open and accepting participants. I’m very interested in it but not sure I would be eligible due to previous traditional radiation. Also, I’m scheduled to start SBRT on 5/8 and already have had my simulation for that along with having the fiducial markers (gold seeds) inserted in the tumor in my liver. So I guess I have to do the SBRT and hope it’s successful before I can look at other treatments? I hope I made the right decision. There’s so much information I get from this website that it makes me wonder about my decisions sometimes. I’m keeping a record of all I learn from you guys for possible future use.

    Thanks again for all you do!

    Mary

    in reply to: My wonderful daddy lost his battle #71021
    mcwgoat
    Participant

    Honeyz1,

    Please accept my condolences on the loss of your dad. I will keep you, your mom and your sister in my prayers. As time passes, I hope you will be able to recall the happy times with your dad and family and find some solace in those memories.

    Peace,
    Mary

    mcwgoat
    Participant

    Hi Percy,

    Thanks once again for such great information. I see a doctor at Sloan (where I am being treated) was one of the presenters at the IR conference where they showed the results of the preliminary study of IRE. The results look very promising. Looks like they’ll be doing a larger clinical trial. I will follow this closely just in case my SBRT treatment doesn’t work. It’s good to know there’s a lot of movement towards other treatment options for CC down the road. Makes me feel more positive that I can stay alive a lot longer with this disease.

    Can’t thank you enough for your tireless research work!

    Mary

    mcwgoat
    Participant

    Hi Percy,

    I can imagine how the research can be depressing. You delve so much more deeply than I do into this disease and I find it difficult at times. It sometimes makes me feel so hopeless. That’s when I pull back a bit and try to regain my positivity. It is difficult – so I thank you again for your perseverance. This website, and all the people on it, have helped me immensely. I’ve learned so much from all of you and it has helped me with questions for my doctors.

    I keep asking my doctor about surgery since I hear that is the best chance of long term survival. But I keep being told because the tumor is on the left and right side of my bile duct in my liver, and also at the junction point where the bile duct leads into the liver and also because lymph nodes were involved, that I am not a candidate for surgery. But I will keep asking that question as I continue other treatment.

    As I mentioned in an earlier post, I am being treated at Memorial Sloan Kettering in NYC. I am considering sending all my records to Dr. Kato at NY Presbyterian for a surgical opinion. I don’t want to do that until I complete the SBRT next month.

    Again, thank you all for the informative information on this website. It is invaluable for all of us dealing with this disease.

    Mary

    in reply to: My mum just died from Cholangiocarcinoma. #70948
    mcwgoat
    Participant

    Exoaria,

    There are no words at this time to tell you how sorry I am for your loss. What I can say is as time goes on the good memories will outweigh the sad ones and you will find yourself smiling about the times you shared with your Mum.

    For now, take time to grieve and be kind to yourself. If you don’t have anyone to talk to, please find a professional or religious person who can help you through this difficult time.

    I will keep you in my prayers.

    Peace & Love,
    Mary

    mcwgoat
    Participant

    Thanks for the clarification Percy. I’m excited to start SBRT and see some positive results!!! You are full of so much useful information on this disease. Your posts have helped me understand a lot more clearly.

    Thank you again,
    Mary

    in reply to: Biopsy in morning #70928
    mcwgoat
    Participant

    Kris,

    So glad it went well!!! I was thinking about you all day yesterday!!! Hope you had a restful night’s sleep and are feeling good this morning. Can’t wait to hear about the trial next week.

    Take care,
    Mary

    mcwgoat
    Participant

    Hi Percy,

    Thanks for this info. I’m guessing it applies to SBRT also? I’m starting that next month. Surgery is not an option for me so it was good to see this study where there were some positives outcomes for radiotherapy.

    Mary

    in reply to: Biopsy in morning #70918
    mcwgoat
    Participant

    Kris,

    I’ll be thinking of you today.

    Mary

    in reply to: Results of 4/8 PET Scan #70874
    mcwgoat
    Participant

    Marion,

    Thank you for all your information. You are a godsend!!!

    Mary

    in reply to: Results of 4/8 PET Scan #70873
    mcwgoat
    Participant

    Pam & Kris,

    Thank you for your words of encouragement. As you both know, this can be so overwhelming. I feel like I have to be a doctor to understand this all and it can be so stressful. But it’s my life and I don’t want to miss a thing so I research and research until my head is spinning!!! I’m learning a lot and I’m so grateful for this site but sometimes I’m so tired I just want to give up.

    I thought myself pretty lucky at being so healthy with this disease (especially when it was adenocarcinoma unknown primary) and really believed I was going to beat the odds. But now with the new diagnosis, and since the surgery on 3/25, I have to really convince myself to stay positive. I guess it takes time to recover from any surgery and maybe that’s what I have to remember and not be so hard on myself.

    Anyway, thank you again for your support. I will keep you guys in my thoughts and prayers. I intend to think of all of you when I am at the Grotto in Lourdes and will ask the Blessed Mother to help us all with this disease.

    Dorien – I second your comment above. That is some of my problem too. I want definitive answers and they just don’t have them sometimes. I think I’m being taught the gift of patience with this disease!!!

    in reply to: Results of 4/8 PET Scan #70867
    mcwgoat
    Participant

    Thanks Marion.

    Dorien – no questions are dumb. SBRT stands for Stereotactic Body Radiation Therapy. It’s a very high dose of radiation that is image guided directly to the tumor – in my case in the liver. I had four fiducial markers (known as gold seeds) inserted in the tumor in my liver that will assist in guiding the SBRT directly to the tumor.

    As for my staging, I was told stage III the beginning of March when I was re-diagnosed from my 2011 diagnosis of adenocarcinoma – unknown primary. However, I didn’t ask, and the doctor didn’t say, if my staging has changed since the old tumor is showing activity again. I will ask that on my next visit and let you know.

    Mary

Viewing 15 posts - 241 through 255 (of 298 total)