shelliec
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Thanks Jess for your thoughts I appreciate it. We will find our way somehow, were you able to have surgery or how are you now cancer free? What roads did you go down? That by the way is great news I love hearing stuff like that it give me hope! God bless you!
Shellie
Julie
As I am reading your posts I am afraid to look at the next line for the unknown. I can’t even begin to understand what you are going through and I am truly sorry you have to experience this! So I have a question regarding your blood cancer at what point was your hemoglobins off and realized there was something wrong? My fiance has had problems with this red and white along with hemoglobin issues and when I read your posts I started freaking out! He is currently on GEMS/Carbo due to the bad side effects of Cistplatin. But Carbo is hard on the bone marrow and blood counts he couldn’t get chemo last week due to his numbers being low. I am just wondering if this is the start or is this common with CC? He has been doing chemo again since September of this year he had a six month break with no growth. I am just wondering what to look for? Any way I hope you have a very Merry Christmas!Shellie
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!!
xoxo
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..
Thanks
ShellieNate-
First of all congratulations on your engagement and soon to be wedding! How exciting! I know what you are going through my fiance is also diagnosed with CC! Life changing for sure, you are going about it the right way the same way we are one day at a time. Dale (fiance) was pretty much told the same thing your fiance was… SO so hard to deal with, but luckily you found what I did this forum to help you get through this. Keep positive for her and you and enjoy every day and every moment with her. Fight like you didn’t know you could which I know you can! Dale was diagnosed a year ago they gave him 3 weeks so those doctors do not know it all only one person does he is in the sky looking down on us he will ultimately decide when it’s our time. Good luck and HUGS to you both
Shellie
Marion,
We are waiting for the phone call but it is suppose to be before his first chemo on August 16 when he starts chemo back up again. I am hoping that it shows a path so we know which drugs are going to work for him! Amazing how it all works!Thanks,
ShellieMarion,
So yes next they want to do a biopsy for molecular testing and they want to see if they can do TRACE on him where they directly hit the liver with chemo beads. So we may be on the right track?
Thanks Marion!
This gives me so much HOPE! Love this article we are looking into the BGJ398 in New York hoping we get good results!
Lainy,
Thank you for all the information! I have checked with MD Anderson what I have come across is insurance isn’t accepted in other states
I am however going to make a phone call to the Cleveland Clinic see if that gets me anywhere. So scaryLainy,
I am all for 2nd and 3rd opinions I just don’t know where to start! I am so over whelmed and feel hopeless! So before he was diagnosed we went to a few different doctors before we decided to go to U OF M the reason we decided there is because the treat this disease all the time it is actually common there but I feel like everything is protocol nothing “out of the box”. Dale is the youngest person they have there, so why isn’t he getting different treatment?? How do they determine what he needs?? I get so frustrated I just don’t know what to do. Do you think I should check with somewhere else for the Y-90 treatment maybe someone else would be willing? I appreciate all your helpHi, I am so sorry to hear about your wife I am in a very similar situation with my fiance. He was diagnosed last July also had gotten a blood infection from the tubes. We finally got through that, and he started at U of M for chemo which he did 6 months with no shrinkage it’s over 40% of his liver. He deicided to take a break and has been off for 16 weeks. Our oncologists suggested directive therapy where it targets just the liver and kills the cancer cells. I hope you and your family all the best hang in there! You got this!
