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Sophie H. #97012 06-08-2009 07:54 PM
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Rachael Offline OP
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Thanks so much Sophie, it was very shocking, I think we are all just now starting to let it really sink in. I think as far as my mom goes she has been great about the screenings every six months, but not so great on really taking care of herself as much. Try not to think of that with your husband, I'm sure you have heard it many times, but just think of the fact that as of right now he is clear and keep focus on that.

Thank you for your thoughts and you too will be in mine!


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
Marlene41 #97014 06-08-2009 07:57 PM
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Marlene, thank you, for your thoughts, I think one of the worst parts of this is questions that cannot be answered, and all the waiting between tests and doctor appointments, even if they are only a day or two.. I'm sure you know... they seem like weeks!

Thanks again, and prayers back at ya!


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
Bob Whyte #97016 06-08-2009 08:01 PM
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Thanks Bob, I am amazed at all the support people share here, it really is a great place to get some comfort, especially knowing that everyone here is going through or has been through the same type of things and yet can support eachother.

thanks again!


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
EzJim #97017 06-08-2009 08:02 PM
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EzJim, lol... I got what you were saying... thank you


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
Deejer47 #97019 06-08-2009 08:09 PM
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Deejer, I am trying to get as much info as I can, becasue you are 100% right, my dad is probably taking this just as bad as her and we only get bits and pieces of what the doc says. Fortunately my mom put me on all her papers as a health care proxy as well as my dad, so if need be, I can legally call her doctor and get all the info I want. As far as eating, thank you for the advice, she is trying to eat, but unfortunately, her jaw is really bothering her and she really can't eat much, everything either has to be mashed or pureed, but at least at this point she can still taste pretty well, so thank you for that info, I don't think she is really aware of that. Oh yes and lots of hugs... she definitely gets plenty of them... and then some...lol.

Anyway, thanks again, and hug all around!


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
Rachael #97022 06-08-2009 08:17 PM
Joined: May 2009
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Please keep us posted on how your mom is doing.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Nancy T #97023 06-08-2009 08:19 PM
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Thanks Nancy, and I'm am terribly sorry to hear about your mom too. That has got to be scary.. 4 times around.. but the good thing is, is that she knows she has beat it before, so she can definitely do it again, and hopefully that helps to give her that drive. I agree too, when I first starting reading posts here it was a bit scary, I think it was because of seeing some of the awful things people have had to go through, or are going through, but then I thought.... what a great place to be a part of, no matter what people have been through they are still so eager to support others... like one big family going through it together. the only update I have tonight is that she will be seeing her chemo doctor tomorrow.. so I'm sure I'll have some more info tomorrow night to share.

Thoughts and many prayers to you, you mom and family, I don't know if you have ever heard the saying before: 1 for the money, 2 for the show, 3 to get ready and 4 to go... in your case.. gone for good! I know that saying was really meant in this sense, but I always try to turn something into a positive.. no matter how hard and trying it can be.


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
Rachael #97052 06-09-2009 01:15 PM
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Rachel, I think that saying is great - we're ready for it to "GO"!!! Mom is in her fourth week of chemo/rad. treatments and I know things will start getting harder now. She's back down to 103 lbs. and not able to eat much b/c her mouth hurts too much. I need to encourage her to eat as much as possible and drink LOTS of water too. And you're right, this website is like one big sharing family. I love that so many people who have been through so much are willing to share their experiences, good and bad, to help others. And I love that they don't mind answering all my questions! It's good that your mom made you a medical proxy so you can get all the info when/if you want. My mom doesn't mind me coming with her to her appointments and/or treatments although I can't make it to as many as I'd like. I think both my parents actually like having me there. You take care and keep up the positive attitude!!! I will be keeping you in my prayers too. smile

Nancy T.


CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
Nancy T #97053 06-09-2009 02:24 PM
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Think about Carnation Instant Breakfast VHC that has 560 cals in the small 8 oz can. At 103 she can't afford to loose a pound more. What about the Peg or the nasal tube?


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #97163 06-11-2009 07:07 PM
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Hey everyone, I haven't been able to get on in a couple days, but here's the latest. Mom saw her Rad doctor yesterday, I thought it was supposed to be her chemo doc, but anyway, he told her, after chemo, they will start the radiation, but before they do, they will have to take all her teeth out and she will also be getting a PEG tube. She will be going everyday (Monday-Friday) for 6 weeks. Her chemo, I'm still not too sure yet exactly what she will be getting, but I do know that they told her she will get a port to administer it, She sees that doc on Monday, and I think will be starting right in next week. Nancy, I wish I could go to my moms appointments with her, but unfortunately she prefers it be only her and my dad, which I have to respect, then I only get bits and pieces of what the doctor has to say, even between the 2 of them, I know I am definitely not getting everything. I also know that they told her after chemo, then teeth and tube, then rads, then she will have reconstructive jaw surgery by using bone from her leg.... all of course depending on how everything goes. I will be calling her doctor though through out her treatment plan and get it right from him on how things are going, and progressing, and if they are progresing, thankfully she at least put me as a proxy so I can do that.

Nancy, I'm so sorry to hear that your mom has lost weight, the doctor told my mom to eat everything she can now to bulk herself up, but she can't eat much of anything either because her jaw is in too much pain to bite down, so I don't know how she will do, she's about 120 now before treatments, so I'm afraid to see where that will take her. I wish you and your mom the best, and hope she doesn't lose much more.. maybe the doctor can do something to help her like David suggested. Best wishes!


Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come.
mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11

**let good prevail over evil**
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