snnle
Forum Replies Created
-
Posts
-
Matt,
Praying that Lisa responds well to FOLFOX.
My husband (41) was dx with CC in Jan-13 and it’s been a roller coaster for sure. Five rounds of gemcis didn’t work on him at all and now he is on FOLFIRI+Tarceva. Best wishes to the both you and your family.Blessings,
SusanHi Heather.
When we met Dr. Aloia in March he gave my husband a 70% possibility that Le would be resectable, the 30% he will confirm with his retinal scan once he opens Le up. Le’s labs were normal with negative tumor markers. CT scans only showed the primary tumor in the bile duct. So we scheduled the surgery for April. When Dr. Aloia opened Le up, he said he could see abt 20 metastasis in the peritoneal so he had to abort the surgery after 3 hrs. He did remove the gall bladder though and said that should prevent the metastasis from spreading to the gall bladder and having the possibility of dealing with that in the future and it also helps with the chemo side effects.Prayers for a successful surgery for your hubby.
Blessings,
Susan@ Heather – I do love this forum also – so sorry that you have to come here also. Such wonderful people so willing to share their knowledge, experience, stories, etc…so very grateful!!! Prayers for your hubby and his surgery. I didn’t get the message from you but I did send you an email with my number. Please call or text when you are ready to talk.
@ Lisa, Suz, & Carl – thanks so much for the prayers – we will take all that we can get!!!
@ Dorien – so sorry abt your hubby. Prayers that he continues to have good response to chemo. I am learning that very little is known abt this awful disease
@ Heather – I do love this forum also – so sorry that you have to come here. Such wonderful people so willing to share their knowledge, experience, stories, etc…I’m so very grateful!!! Prayers for your hubby and his surgery. I didn’t get the message from you, but I did send you an email with my number. Please call or text whenever you want to talk.
@ Lisa, Suz, & Carl – thanks so much for the prayers – we will take all that we can get!!!
@ Dorien – so sorry abt your hubby. Prayers that he continues to have good response to chemo. I am learning that very little is known abt this awful disease. Hang in there.
Blessings,
SusanMarion – Medical records are now on my list of to dos for Wednesday, thx! I will find out on Wed how MDA works.
Lainy – that’s a great story. I laugh because I can totally see myself doing that too!!
So glad I found this little community. Ya’ll are awesome!!! The knowledge, experience, stories….heart is happy.
Lainy – thx for the positivity. It’s so easy to forget that in the mist of this battle.
Marion – Le does have a complex case mgr that was recently assigned, I think I may need to utilize her more going forward. Thx!
I still feel like I’m in a fog most of the time – trying to figure out what to do and where to go. I wish there was a flow chart that says if you are here, go here…Dr. J was able to push for the PET scan and Le is going in on Wednesday.
Looks like they will have to request prior approval every time they do a PET scan. Hopefully it will provide more answers then questions…@ Marion – thx for the links this is very helpful. I may need to contact the manufacturer to see if we can get some type of assistance. Base on our income level (since we both work) we have yet to be able to qualify for any type of financial assistance. I’ve realized that no amount of planning can prepare you for the expense of a cancer diagnosis. In a matter of 4 months we have wiped out our emergency fund and dipping into our retirement savings.
At this point I’m praying insurance will cover the protocol.@ Lainy – Le has a biliary drain tube and not the stent. He’s had the catheter replaced every 4-6 weeks as it clogs up and/or gets infected. My understanding is chemo combo is to stabilize and hopefully shrink the tumors. I didn’t ask if it was palliative. Actually, it never occurred to me to ask that. So thanks Lainy, I will be asking that of Dr. J going forward. Dr. J doesn’t think radiation is the route to go right now because he can radiate the liver but he would not be able to radiate the metastasis in the peritoneal. I’m Starting to feel like our options keep getting smaller & smaller.
Thanks everyone for your encouragement. We are making the most of the situation. Since we have two young girls we are trying to keep things as normal as possible and not let this thing consume us. All of their activities have been a welcome distraction for us.
After 5 rounds of gem-cis my husband had his restaging at MDA this past week and the results were not what we were hoping for. New CT scans show some possible lesions on the liver that weren’t there in March and the peritoneal metastasis are visible now so that means it growing. Lab results still negative for tumor markers. Dr. Javle is “engineering” a PET scan to imaging the primary tumor. He explained that given the location it’s a very difficult cancer to image and therefore PET scans are not approved for this type of cancer. This baffles me as I would think that when someone is diagnosed with something like icc that resources like PET scans would be available. I guess I just don’t understand.
Dr. Javle will be switching Le to FOLFIRI + Tarceva. My understanding is that this cocktail is not approved for cc yet so I not looking forward to battling with insurance for coverage. I’m working on looking for info on this combo, but I’m not coming up with much. Any help will be greatly appreciated.
Thanks,
SLThank you all for your support. This community is such a wonderful place for knowledge and experience. Going through cancer is so very isolating as it is, but something like cc when no one around has heard of such a thing is even more isolating and daunting. We are ready to learn what we can and kick cc’s butt.
@ champion – So happy that you will be getting a new liver soon, prayers that everything will go as planned. Le is not a candidate for a liver transplant bc he had a biopsy done back in January to confirm cc. Had I’d known that a biopsy would exclude him I would have requested they confirm it a different way to keep that option open.
