November 1, 2016 at 8:51 pm #55186lainyParticipant
Yes, Shellie, sorry, it is Cleveland Clinic. Oh do I ever understand about out of State Insurance. I went to Carlsbad Calif for a week with my BF and I got a viral infection. Ended up at 3 different Urgent Cares and not one would take my Insurance. I just had an Insurance lady come over and she spent 2 1/2 hours going over everything and starting Jan 1 I will be covered everywhere and can go to anyone. At my age I had to do this as Medicare only covers your own State.
IDEA? Have you researched for another ONC where you are? Someone maybe who has treated CC or could recommend you to someone who has treated CC. I can tell you are a fighter and when the time comes that the right help is used, your fright will turn to even more fight. Put on your pink boxing gloves girl, and I will even zap them with some bling!November 1, 2016 at 8:41 pm #55187
Lainy the problem with out of state help is that they don’t accept Dales insurance which is Michigan based? Are you talking the Cleveland Clinic? I haven’t talked to his Onc at U OF M I feel like he is disconnected with us. I will find him help come hell or high water I am a fighter and will not give up! We are moving as quickly as possible to get the help we need! I appreciate yours and everyone’s opinions it really helps me get through this. We will see what happens tomorrow I will keep you posted! I know its a nasty disease that is hard to treat, I just need someone to guide us in what we can do? Keep fighting the fight! Thank you helpformom2016 your kind words are so appreciated!!
xoxoNovember 1, 2016 at 7:52 pm #55188helpformom2016Member
I understand your feelings. Mom’s chemo depleted her of everything that made her, HER.
She has decided no more. Her last treatment was 10/12/16. We go next Friday to meet with her Onc about how her care will change/monitor her disease now that she isnt doing chemo.
Yesterday -finally- my mother was herself. Everything from her voice, her pace around the house, her face and spirit. I can only pray for more days like that.
It was something I havent seen for months. Even before our chemo she was on Harvoni to treat her HepC – YUCK!
Im glad you are going where you will feel more attended to. I dont know about FOLFOX other than the Oxaliplatin part of it. Chemo is a real bitch- there is no nice way to put it so I wont bother.
Some people can handle it better than others.
Guidance and “what should we do?” about it all is like sailing a ship at night with no moon or stars.
I hope the new doctor can be a light for you and Dale.
xoxoxNovember 1, 2016 at 2:42 pm #55189lainyParticipant
Dear Shellie, I am so sorry to read about your bumpy roads and the frustration you are experiencing. Unfortunately sometimes these things happen because of the rarity of the CC. I feel strongly that you should seek another opinion but please keep in mind that where ever you go be sure they are VERY experienced with CC or the treatment will be just a bad. Do you have your own Oncologist that you could talk to about going elsewhere? CC is not something that can wait for treatment as it is a little monster that quickly grows up. Not sure how far you are from Ohio but there are a couple of great hospitals there that have lots of experience with CC. Wishing you the very best. Hang in in and hang on, it is a wild ride.November 1, 2016 at 2:29 pm #55190
Thanks for the pep talk advise ladies! So we decided that we werent getting the attention at U of M that Dale needs. We are looking at Karmanos we have an appointment tomorrow to see how they would be able to help. I do understand stable is good, so hard when you want more, he’s to young to let him keep taking chemo until his quality of life isn’t good I just can’t do it! At the last appt at U of M they mentioned FOLFOX I am torn what to do at this point my gut is telling me to try somewhere else he is just a number there and I can’t handle that. He was tested for the molecular alterations and nothing was found for a path. Some days it’s like you keep hitting walls but some day I hope to knock that wall down and have him with me for longer… Marion Dale experienced horrible side effects much like your mom it’s heart breaking I hope she is doing better. We will see what Karmanos says tomorrow, he is so much better with NO CHEMO it’s amazing it’s like my”‘old Dale” is back again! I missed him..
ShellieOctober 20, 2016 at 8:35 pm #55184marionsModerator
Shellie….I so much wish for an upward swing with this roller coaster. Blood transfusions to raise hemoglobin levels are not an uncommon procedure. Someone once likened it to a “pep” pill by feeling better instantly. I hope this is the same for Dale.
You had mentioned biopsy. Was it tested for molecular alterations (faults?)
I can’t recall anyone (on this site) treated with IPT. Information does not look very promising:
Stay strong, dear Shellie, we are behind you all the way.
MarionOctober 20, 2016 at 7:31 pm #55185helpformom2016Member
Remember that stable is good. Yes shrinkage is preferred but no growth or new tumors is really good news. I am in the same boat as you are.
My mother really cant stand the thought of another infusion as bad as she feels. Her treatments have kept her disease stable. So we are very thankful for no new spread. But she isnt herself or able to do much of anything but lay down.
Our plan was chemo to keep the cancer from spreading and growing (its already in her bones). That was our only option. So she will have to be on chemo – which ever kind – until it doesnt work anymore – or she quits.
Its not a spot anyone wants to be in. Talk to your ONC about options. Ive not heard about IPT.
If you’ve had an update since this post I hope you’ll share it.
MegOctober 13, 2016 at 4:42 pm #5979
Well chemo doesn’t seem to be working for my fiance Dale he went through CIS/GEMS and no change in the tumor gave him several months off with no change also. He had a slight change in the nodules in his lungs putting him on GEMS/CARBO due to the side effects of CIS still no change in the tumor?? OK with that being said chemo is taking such a toll on him he had to get to pints of blood yesterday because his hemoglobin was so low NOW WHAT? We told the doctor we want to re-evaluate the situation. Any one heard of IPT it’s a insulin low dose of chemo but rather costly! I am all about alternative medicine has anyone had any luck with any alternative medicines? I am all about a second opinion a different chemo then what is getting offered at U OF M. BUT WHAT WORKS?? SO frustrated with coming up emptied handed? I need some guidance on how to help him? I am not sure which direction to go in? I just want something to work something positive right now would be great. IF anyone out there can help I would appreciate it!
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