Austin Newly diagnosed (stage 4)
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WOW>>This board is so incredible..THANK YOU ! THANK YOU! THANK YOU!
I am marching in that hospital today with these posts in hand and I am going to read them to my husband…. WE are going to have a plan!….THank you everyone for all your information ….
WE should have the 2nd opinion early next week..and will keep everyone posted!! and probably a 3rd after that!!!!!! (Dr. KATO)
Thank you so much!!
Very Sincerely,
The Austin FamilyHello Mrs. Austin and family,
I am very much like your husband with regard to the difficulty eating. It amazes me that I am able to be hungry and also unable to put anything in my mouth at the same time. It is incredibly frustrating and and without food the lack of energy made me start to give up. Please don’t let that happen! I think I’ve got a solution for now because after losing 35 pounds over two months I’m beginning to GAIN weight and my appetite is back.
You might try asking for Marinol which is synthetic THC (yes the drug in marijuana). It helped for a few weeks but got less effective after that.
Then my onc put me on Dexamethasone (a.k.a. Decadron I think?), a steroid (tiny pill) once a day in the AM. Half an hour after the dex and I feel hungry and for three weeks have been able to eat a full breakfast, lunch and dinner with snacks in between. Have GAINED a couple of pounds!
I’ve also found that, if I DON’T eat a full breakfast, the effect is not as good later in the day. It’s true: Breakfast is the most important meal of the day!
Hope this works for you. Don’t give up, don’t let doctor indolence stop you from demanding that your husband get the care he deserves, and don’t sweat getting a second or third opinion even if you have to pay for it – the universe will provide for you if you ask. Heck, I never believed we could afford to have a baby and now she’s 14 and the most beautiful thing in the world, and we’re not broke. Go figure.
Peace,
Michaelsimon555 wrote:NOW, GET this… our local oncologist’s associate told him that food will only feed the cancer…What an idiot!
What do they call the guy who finished dead last in the medical school? ….. A Doctor.
(sigh)
Simon…..I am so sorry to hear of the disappointing news re: the mestatases. Too often we receive disappointing news, which literally “takes the wind out of sails.”
Your husband needs some positivity. You have been giving him that and so should others.In re: to the comment made: We assume that food “may” feed the cancer however; “it also keeps your husband viable.”
Many of our people have responded favorably to various treatments and I am wishing and hoping for your husband to also experience the same.
Please continue to visit with us and keep us posted. We are in this together.
All my best wishes,
MarionWHAT!!! Sorry for yelling but it’s people like that Doctor that just infuriate me. See, I am not always joking around! I think that if your husband can hear from someone like Dr. Kato he may get a whole new prospective. No wonder he is down. I have one suggestion, as much as I love Orange Sherbet, how about trying Carnation Instant Breakfast. When Teddy didn’t want to eat I blended a pack with skim milk and a banana. He can have that in place of every meal and it has all the nutrients he needs. Just figuring since he likes sherbet you could put a small scoop of ice cream in it and he would have a real milk shake. I am just feeling so much for you, it’s time for something good to happen like that phone call!!!
P.S. For fighting CC your husband needs a game plan and right now he has none and that could be part of his feeling so down. When a game plan is put in to place the playing field all changes for the better for all of you. By the way we do have Stage IV survivors on here!Hello and I wanted to thank everyone for their responses..You are all so amazing..
WEll…so far My husband has been in the hospital..he rehydrated and yes that helped..The chemo was stopped after 1 session….He got sick and dehydrated and into the hospital he went as he vomited the morning of the 2nd chemo session. So here we are again..His spirits are pretty crappy, he is so defeated.he eats very little, and I mean very little.maybe orange sherbert.He will not touch any solid food..Said he is not interested. NOW, GET this… our local oncologist’s associate told him that food will only feed the cancer..WELL of everything that was said..THAT Stuck in his head…..Truthfully I am so angry…what purpose did THAT serve? IDIOT!
Since speaking to that oncologists associate he has become so defeated..I am so ANGRY at that DR..I could kick him..It is just wrong! Wrong! Wrong!! I say shame on him!
We have a 2nd opinion from Dr Veach next week from MSK…and that will say very much..IT will most likely be a phone consult as there has been no new info since the first chemo…we are just in a holding pattern..we are trying to convince him to fight..not sure what he is thinking. but I do know he is terrified. Depending on what Dr Veach says we will proceed from there, either within MSK or consult DR Kato.or refer us to someone else…within MSK
Our PT scan was not good..metastisized Stage 4…so ….we wait, we hope and we pray……..Austin family,
Sorry I haven’t posted before now but I guess you started this conversation in December while I was not feeling well and not online much. My prayers and thoughts are certainly with you. when I started this journey, I was kind of upset with the way doctors seemed to drag things out instead of jumping right on treatment.
Just know that this experience will strengthen all concerned. If I were closer, I’d visit and make sure everybody got a good dose of laughing.
Please keep us posted.
Hi Derin, congratulations on already being a CC survivor. You can’t loose with such a postivie attitude and I just want to wish you the best of luck on your chemo date for Friday. Looking forward to more good news.
I live in Florida and ended up at Memorial Sloan Kettering. I had CC and it was contained to the bile ducts. I had a resection of my liver (3/4 of it removed), the gall bladder, several lymph nodes, and all of the bile duct and after surgery they said that they ‘got it all’. They used my small intestines to construct a new bile duct. Dr. William Jarnagin at MSKCC did my surgery, he was fantastic. I would recommend him if you are in the area or can get to the area to get a second/third opinion. We faxed all procedure results and actually had the initial biopsy samples sent to them for analysis as well. I’m starting chemo on Friday this week as a preventative measure. All the best wishes, hope you continue with positive news….
WOW! We love even small changes for the better. I am hoping for you to get in touch with Dr. Kato. Keep up the good work!
Hello,
I do not know what the specific numbers were for the Billirubin…but something has shifted..He feels better that he certainly was..Maybe because he is now hydrated..He just seems sooooooo much better…He has had 2 good days…has been eating pudding, Jello, Boost and sherbert..for now..
BUt “something” has shifted..Dr said the bad numbers are going down and the good numbers are going up…oh ..ok…we are waiting for the second opinion and maybe Dr Kato will get a shot too…..But we are liking whatever this small change is……please continue…and…to be continued……
THanks for all your help and support!
It is greatly appreciated!
The Austin FamilyDear Austin Family, I am so sorry to hear of this turn of events. You might want to go to our Search button at the top of the page and type in Dr. Veach and see if any posts come up. Mmm, I just did and his name did not appear, however, SK is very good. Did you ever get to talk to Dr. Kato? I know the waiting game is just horrible.
What was the Billie count and have his stents been checked for infection? Infections can come on very quickly. I am sending prayers, good thoughts and best wishes your way. Hopeing for some better news! Be strong!Austin family: sorry to hear of the latest developments however; you will notice an improvement with the much needed hydration. Please know that a tidal wave of good wishes is heading your way and please, keep us informed.
enclosed please find the link to Dr. Veach:
http://www.mskcc.org/cancer-care/doctor/stephen-veach
MarionWell, We never had the 2nd week of chemo. My husband got very sick when he got to the Onc and vomited and off to the ER he went, and was admitted. He was severely dehydrated and bilirubin was high……so here we sit .W a I T I N G….
WE have decided to seek a second opinion from a Dr Veach at Memorial Sloane Kettering in Nyc… Does anyone know about him?My husband is too sick to go to NYC..so we have faxed all the info and will see what is said. They call this a mail consult, and as good as our insurance is, it is not covered..That, we cannot understand..What would be the difference???
Will keep you posted….Any responses would be greatly appreciated…
Thank you!
The Austin Family
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