New to the boards after reading a lot recently
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Leo,
I understand the questioning you’re experiencing. I’m in the medical field and looking back my Mom had years of itching. She saw dermatologists and her doctor numerous times. Looking back I wish I’d been more proactive about more testing being done.
My Mom was 76 when diagnosed. She was on several chemo drugs (oxiliplatin, gemcitibine, xeloda and nexavar) The ONLY side effect she had was cold neuropathy and only for a few days after each treatment. She was massively annoyed since it prevented her from enjoying her nightly ice cream fix.
She was treated at Duke Medical Center and they were VERY proactive in preventing side effects. She did have zofran and compazine for nausea but because of these drugs did not experience any.
I hope you have a similar experience! Please know I’m holding you and your family in my heart and prayers.
Hugs to all!
Pam
Sending love & positive thoughts to you & your wonderful family, Leo. I’m sorry I can’t add much, as I don’t have much experience of the issues you’re dealing with – but I can listen for as long as you want to talk!! Please keep coming back & venting as much as you like. We’re all here for each other, which is why I love this board so much.
Julia xx
Leo you are welcome to keep on venting to us, that is why we are here. The more you vent and type the more it seems to leave the system. We cannot go back on would haves could haves the important thing is to save that energy for the fight here and now. I know easier said than done. Don’t think we all don’t have our pity parties but once you are forging ahead and not looking back everything just seems to fall in to place. Honestly when your game plan is firmly in place it will take the place of the should haves. I don’t know a person on this Board who has not been nervous about starting chemo. It is the unknown and we are all afraid of the unknown. Have a good Easter with your Family and good luck tomorrow!
Thank you for all the suggestions and support everyone. I’ll be asking my oncologist about cyber knife and brachiotherapy possibilities this coming week. I’m nervous about starting chemo tomorrow morning but I am also anxious to feel like I am doing something to fight back.
I feel like I am starting to cope a little bit better each day but I’m still having trouble sleeping more than 4 to 5 hours a night. I wake up in the early hours of the morning and then my mind starts racing and I can’t shut my brain down enough to go back to sleep. I’ve always been a light sleeper and this is definitely not making it any better.
I am sure it’s just me looking for someone or something to blame, but I am still frustrated feeling like I didn’t receive everything from the Mayo Protocol the same way that they do AT the May Clinic. I had a friend go through the protocol at Mayo in AZ a month later than I did and his treatment included brachiotherapy. I understand the extra wear and tear on bone marrow, organs, etc, but can’t help but wonder if that would have made the difference for me.
Then again, my chemo oncologist pointed out that I didn’t have any clear tumors unlike my friend who was transplanted at Mayo. I believe he actually had clear ones but I’m not 100 percent sure. It was also my oncologist’s (and I believe the UW Hospital Tumor Board’s) assessment that this had likely seeded before I even underwent much of the protocol towards the middle of last year. Is that really possible? Can it lay dormant for a long time at small enough sizes to not be seen on scans? If so it’s possible it had been there a while and then it just went bonkers when I was put on all the immunosupression post transplant.
It’s that slippery slope of my brain right now. I’m sure if I went directly to Mayo last year instead of staying at UW I’d either have been transplanted (with the same results post transplant) or been rejected outright if they had found something UW hadn’t. I’m having trouble shutting off this thinking right now thought.
The ridiculous part of all of this is that I’m sure if I had the therapy and/or went to Mayo, the results would be the same and then I’d be grasping for other straws.
Thanks for listening.
-leo
I have Crohn’s Disease that PSCd to CC. Have been on chemo for 18 months, most recently Gemzar/Oxalyplatin. Doing well but as you know, no cure. Mets to the abdominal wall. Good luck.
Leo,
I was only a few minutes into reading your posts and already know that you are a remarkable man, husband and father.
I was a caregiver and not a patient but I can tell you everything you are experiencing is normal. The twists and turns of CC take time to process. Be kind to yourself.
We are all here for you and your family. Feel free to question, to vent, and rage. I also want to mention the search function at the top of the page. You can search in any number of ways.
I am sending warm wishes, many prayers and much love and hugs,
Pam
Leo,
I know how you are feeling and I know what it is like to be battling this with a young family. You can’t second guess yourself and your treatment decisions. You absolutely made the right choice by doing the transplant protocol to give yourself the best chances. And UW is a great facility with great Dr’s. This cancer is tenacious for hiding and there is nothing that can be done about that, anywhere you go.
As for the emotions….. For me, the treatment/procedures when I was in the protocol were much easier than they were when I first found out that the cancer had spread. My Oncologist gave me a prescription for anti anxiety med sand that helped get me over that bump. Now I am handling all of this better and no longer need them. But I still have the prescription if I ever have a bad day for some reason.
I hope your headache has subsided and you’ve been able to enjoy your family today. Still praying for you.
Rick
Thank you again for more replies everyone. I am deeply in the muck of it now. I am vacillating between anger, sorrow, frustration and hope. I know this is part of grieving and that it makes sense after my diagnoses, but it’s not making it any easier to sleep or get on with fighting just yet.
I keep getting frustrated feeling like my docs missed something during my Mayo Protocol by NOT doing brachiotherapy but my oncologist is of the impression that 1. they had no target because I only had ‘suspected’ CCA until after they looked at my old liver post tx and 2. he strongly feels this has been seeded for a year possibly a year+. Did I screw up by not going directly to the Mayo Clinic?
I jump from there to anger and frustration that I don’t know how much time I have left with my beautiful wife and wonderful, young son. When I do that I just feel like breaking down and crying because I want the world for both of them. My son’s better off having me in his life for a few years vs. never, right?
I can tell I was grinding my teeth on some of this last night. i woke up at 5 with a splitting headache.
Anyway, thank you all for listening.
Love and light,
-leo
Marions: Leo and I actually are reconnecting for 2 different sites, the j-pouch.org site and the yahoo/psc group. And yes, this site has been mentioned on the PSC group many times as a reference for those that develop CCA. I’m not sure why many PSCers don’t make it over here, though.
Leo: I’m glad to hear that your Onc is already thinking outside the box a little bit. The “wait and see after chemo” approach sounds reasonable and it’s reassuring that options are being considered.
Rick
Hi Leo,
Please can I join the others by welcoming you to our board. Here I am sure you will find support and encouragement from people who really know.
Come back often and let us know how things are goingBest Wishes with your treatment,
Katie
Hi Leo,
I saw your posting on the PSC site earlier and I have been thinking of you all day. I can only imagine your dissapointment in the results after jumping hoops all last year with the protocol. I’m really sorry to hear about the biopsy.I am wondering if your docs would consider brachytherapy now since there is a specific area of 7mm? Brachytherapy most likely made my mother’s tumor necrotic before transplant ( they never found one on her old liver when they did the path report). When I asked the Mayo why she could have had just this treatment the response was that brachytherapy really destroys the liver ( as well as the tumor apparently) so you would need a transplant anyway. So brachytherapy done on a part of the stomach that may not be somehing you NEED and maybe that could be a treatment that can be done after the chemo? ( of course the other benefit is that it is not debilitating like a surgery). Depending on what your own docs say, you could even run this by the Mayo docs (Dr. Gregory Gores,etc) to ask their opinion??
Keep us posted with your treatment Monday and remember we will all be supporting you on BOTH the CC and PSC sites.
Ashley OreficeThanks for the added replies folks. My doc has talked about removing it, but with the hot spot near my bowels they want to wait and see how chemo works. My oncologist isn’t convinced that the spot in my omentum is the only place that it seeded. He doesn’t want me to undergo a rough surgery only to be too weak to reup on chemo and to see it flare up in various other places.
Hi Leo and Rick….you two are a first in reconnecting from another site. I am wondering: As we know, PSC is a known risk factor for this disease. Has this ever come up on the PSC website?
Best wishes coming your way,
MarionLeo – I’ve been having problems with my email client so please let me know if you didn’t get my email today passing on some of my thoughts.
I almost forgot about our j-pouch.org connection as well. You will notice that there aren’t a lot of people on this support site that have the PSC to CCA progression. Most of the folks here have incidental or other reasons for developing CCA. Nonetheless, there is still good information and good people here so I hope that you’ll find it helpful. Feel free to email me with any questions or anything as well.
Praying for you and hoping that you can enjoy the spring weather!
Rick
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