mcwgoat
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Thank you all for the kind words. I am so grateful for having this site to go to for encouragement when I need it and to share good news also?
I was telling my doctor about it yesterday and how some of us from the NJ/PA area got together, in person, and how good it was to meet and talk to people going through the challenges of this awful disease. She is very familiar with the site and the good it does, especially as an advocate for the patients. She was happy that we got together and gave each other support.
Have a good weekend everyone!
MarySorry to hear about another hospital stay for Mark. I know how frustrating that can be. I had a difficult time with fevers and infections from May to July of this year. It was so bad that I thought of giving up on treatment and just letting go. One time I came home from the hospital on a Friday and was back in on Saturday evening due to fever and another infection!
After being on so many antibiotics, including one for a fungal infection which they found in my biliary tract and bloodstream, the end result was they took out my port and I haven’t had any infections or fevers since. My last hospital stay was the beginning of July. I feel much stronger, and hopeful now, and am once again fighting this awful disease with chemo – Paclitaxel. Thankfully, I have good veins and have not had any trouble yet with getting it intravenously every two weeks – off a week then back on. Yesterday was my sixth treatment, and as you saw in the good news section I got a good result from my 9/4 CT scan so the chemo seems to be working for now.
Sorry for going on with my story, but I just wanted to let you and Mark know that sometimes there are really tough and dark times with this disease but keep fighting and stay hopeful, as you seem to be doing. I know how tough it is for the caregiver. I see it with my daughter, who goes to all my treatments and appts with me. I feel for you, as I feel for her. I wish there was something I could do to take the stress from her, as I’m sure Mark feels the same for you. Saying thank you all the time seems so inadequate for what you guys go through with us. But that’s all we can do is say thank you, from the bottom of our hearts,for always being there for us!
Peace, Love & Hugs to you and Mark!
MaryI have Aetna and they’ve always paid for my PET scans. Maybe it depends on the type of coverage plan you have.
Mary
Hi Lainy,
Sorry to hear that the Humira didn’t work. I don’t know anything about remicade but thankfully our dependable, reliable, caring, researcher Percy was able to help you out!!! Does Percy ever sleep???!!! All the research he does for us, and the wealth of knowledge he passes on to us, is amazing. Can’t thank him enough. I was so glad he was able to ease your mind.
Good luck Monday with the colonoscopy. I’ll be thinking of you.
Love & Peace,
MaryRandi,
Congratulations!!! You have every reason to be happy. Thank you for sharing the good news with us. It gives all of us reason to hope!!!
Mary
Hey Kris,
Stable is definitely good!!! Congratulations!!! Sorry about the acne/itchy side effect. Hope there is something you can do to alleviate the itchiness.
Mary
Hi Randi,
So glad to hear of your clean scan!!!
I’m with you and sure you passed that exam!!! Your upcoming schedule exhausted me just reading it!!! You are one amazing person!!! I’m excited to hear of all your upcoming successes, as I know you will do well because of your attitude and determination!!!
Keep us posted and good luck!!!
Peace & Love,
MaryPatti,
This poem is beautiful and brought tears to my eyes. It expressed exactly how I feel but could never express as beautifully as you have!!! You truly have a gift for writing!!!
When I first started treatment back in August 2011 I went on the regimen of 5-FU, Oxaliplatin and Leucovorin. Going home with the 5-FU was uncomfortable, especially trying to sleep but I got through it. The Oxaliplatin did cause me to be sensitive to cold and I made sure I wore gloves when getting anything out of the
fridge and freezer. I drank room temp water. Also in the winter I made sure I covered my mouth and nose when going out in the cold. This drug makes you very sensitive to cold! This regimen seemed to keep my tumors stable. I had 28 treatments of traditional radiation after this chemo and that seemed to kill of the one tumor that was wrapped around my celiac trunk. Unfortunately, that came back in February of this year along with the tumors in and outside my liver. That’s when I was re-diagnosed with CC stage IV. I had five treatments of Stereostatic Body Radiation Therapy (SBRT) this May and am currently on Paclitaxel.I wish you the best and will keep you in my prayers. Please continue to write as you do it so beautifully. I’m sure it is a great stress release for you
Take care and best wishes with the new chemo.
Peace & Love,
MaryPercy,
Thanks so much for all the info. I never heard of radiation recall reaction so I looked it up and will discuss with my doctor on Friday. I’m concerned with abdominal pain I’ve been having lately and wonder if it has anything to do with the radiation I’ve had and now this chemo. All my level enzymes are high and they’re watching them closely along with my white, red and platelet counts. They decided to go ahead with the chemo because they got my bilirubin down from 22.1 to 1.2 – thanks to the stent they put in my liver in May. So far I haven’t had any breathing problems and my oxygen level has been good as of my last appt on 7/19.
As for the Paclitaxel…I get it over a hour once a week for two weeks then off a week then back on. I have already lost my hair and have seen a lost in my energy level. Also had some flu-like symptoms but not severe. They are watching my counts closely and will stop treatment if they go too low.
Thanks Kris. Sounds like what I’m going through right now is all the feelings you have gone through. It’s good to know that others feel the way I do. When I get down sometimes I feel like I’m being self-indulgent and need to snap out of it. But it’s hard, as you know, when your body is going through so much. Sometimes I get so tired of it all that I just want to quit all treatment – but I’m a fighter so that feelings doesn’t last too long.
Thanks for the words of encouragement. I hope someday I can help others the same way.
Love & Peace,
MaryTake care Lainy – hope you are able to rest comfortably today and the flu symptoms go away. Great news about being cancer free!!! Good luck with the blood test.
Mary
Hi Percy,
You seem to be very knowledgeable regarding the various treatments for CC. my doctor has me on Paclitaxel right now and I’m wondering if you know anything about this drug? She has told me that she has seen some success using it for CC. I haven’t seen it mentioned on any posts here and wonder if it will be helpful for me?
Just some background info on me…I was diagnosed with adenocarcinoma unknown primary in August 2011. Primary popped up in February 2013 in my liver and that’s when I was diagnosed with CC stage IV because there is lymph node involvement and also tumor wrapped around celiac trunk. I’ve already had chemo regimen of 5-FU, Oxaliplatin, Leucovorin. Then had 28 treatments of traditional radiation. After that had Gemcitabine. Chemo didn’t seem to do much. Traditional radiation killed the tumor wrapped around the celiac trunk but that started showing activity again in February of this year. In May of this year I had 5 SBRT treatments which seems to have stabilized the tumors – no growth so that’s good. And now I’m on the Paclitaxel.
Any input/advice would be much appreciated.
Thanks,
MaryI do understand you Lainy – LOL!!!
Hi Dianne,
My daughter comes to all my appts and treatments with me and perhaps is the only one who deals with my illness directly. But sometimes, it seems, she doesn’t even want to talk about my illness when we’re not at an appt/treatment. Maybe I talk about it too much but it’s always on my mind, especially when I seem to have pain so much of the time lately. I do have a living will/directive that I prepared with the help of my lawyer and my daughter has a copy. I have even finalized my funeral arrangements and my daughter also has a copy of that. I wanted to make everything as easy as possible for her when I die. I’m a very organized person so she was not surprised that I have everything in order. Maybe I’m being insensitive to her feelings. It must be hard for her since we are so close and she has no living siblings. I’m divorced and she is not close with her father. She’s married so she has her husband and I come from a big family that she’s close to. So I do have her to talk to but sometimes I think it’s too much for her. The rest of my family is definitely in denial and I feel sorry for them. They just can’t accept that this disease will take my life and it could be sooner than later. I feel like I always have to be upbeat around them and that can be tiring. I guess I need to decide if I should talk to a counselor or maybe, as Lainy suggested, send an email to the family expressing my feelings.
Thank you both for the advice. It has given me a lot to think about.
Peace & Love,
Mary
