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#45812 08-15-2005 01:29 AM
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Daniel your post just brought tears to my eyes, My mom thought so highly of u,and I want so badly for u to be able to beat this. I too have learned to love like i never loved befor and to never take a day for granted.

My mom was a seven year survivor of this damn disease. She was given the speech of according to stats she was cured. I am not saying this to scare anyone but a year later she was diag with stage IV. I remember the Ent saying this was not related to previous Oral Cancer, i believe he was saying that because he missed it when he gave her the all clear.

I come here daily and it is because of all of u that i can make it through this. With each day there is new hope. Thanks to all.


Was Primary caregiver to my mom who had stage IV, SCC, Supraglottic with Mets to 4 nodes. Diagnosed Feb 04, died unexpectedly from complications from treatment December 17, 2004.
#45813 08-15-2005 02:19 AM
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Danny, you know how I feel about you. I will send you a private email. Keep Looking Up! Love, Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#45814 08-15-2005 02:31 PM
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Hi Michael.
Been thinking about you and this horrible heat we had this week. It must have felt like you had chosen Houston instead of NYC.

How did the first day of treatment go? If the docs allow it, I would go find the best food available until you have to rely on that peg. Give us an update as to how you are doing.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#45815 08-15-2005 02:31 PM
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Ok, Now you've Done it DANNY BOY!!!!!!

There is no way I can get the thread back on track now that you've posted here!!

I'm just teasing you, and that's dangerous on here, since you can't see me smiling and hugging you while I'm saying these things...

Truth is, I am SO HAPPY To hear from you...I've been lurking in the other rooms trying to find the latest info, and I appreciate your taking the time to weigh in here. We are all rooting for you! I send you warm wishes and lots a positive prayers.

As far as the rest of you...Whew!! I stay off the thread for a few hours, and WHAM-O! You guys post so much great stuff!!

----> Ok, for a quick update: TODAY was my first day of Chemo and Radiation.

I thought of each of you as I was scared, nervous, excited and relieved all at the same time.

Of course, everything went off with out a hitch.

Very compassionate teams here! Very gentle, loving, upbeat and supportive nurses, staff and Dr's.

The fill-in for my regular Med. Oncologist today said some optimistic thoughts, one I liked the most and keep reverberating is:

"There is a very strong chance you are virtually cancer free right now, and what we are doing here is EXTRA EXTRA icing on the cake!!!"

Boy he must know my hot button (took one look at me and he knew that smile , that hot button of course: FOOD! (especially any kind that involves EXTRA EXTRA ICING! :-)

Anyway, I thought that was nice of him to say.

I discussed with him the meeting I had with a certain chief of scientific research at a certain company making the new drug we are all talking about. I told the new Doc how this person said that I should PUSH HARD for the drug, and that it's my best shot at getting this beast.

The fill-in Dr said they know ALL about it! They were the main site for the studies, and the toxicity to them isn't worth the risk for the particular circumstances. He knows the guy personally and holds him in the VERY highest regard.

I said, well, if I am ever going to use it, I must NOW since it only proves effective when used with radiation and I can only get radiation once...

He said, "Wrong again...We are pioneers in this field too and I can tell you we are experts are re-radiation if it ever comes to that!"

So, I must say, I like his attitude.

I had Chemo starting around 10AM (NY time), and it started actually with 1.5 liters of saline (fluids) an antienmetic(sp?), and a dirruetic (sp?)...then after I measured over 1000 ml in output (urine) they started the actual Cisplatin (I think it was 127 ml, is that right?), Then, that was followed by another bag of saline and I was off to radiation.

Get this, after I walked in to the rad-suite, they escorted me to the elevators and said the Dr want's to see me, handed me my chart and sent me on my way. I finally caught up with her on a different floor, she was in the middle of a simulation for a new patient (esophogeal cancer), and brought me in to a room to examine my throat.

She said she had 'heard' that I had a feeling in my throat and wanted to see it for herself.

You might recall, I posted several days ago that she mentioned it looked weird to her on inspection the first time.

She said: "It looks so much better!...I agree with what Dr. Sh...(the ENT I saw on Weds)..said. In fact it looks MUCH BETTER than when I examined it last time.."

Then she gave me and Seth hugs and said not to worry. She pointed us back in the direction for the start of my rads...FIRST DAY!

The ONLY problem with the session was the fact that I had to pee so bad after ALL the fluids, even after I went several times prior to going on the table. But even then, it was minor and went by smooth and quick.

The team, 2 energetic guys (even at 6:30 PM), explain every step of the way what they are doing, how long each step takes and how long I have left in the mask.

They are careful, intelligent and serious, but also compassionate at the same time.

OK, sorry to give so many kudos on here to people most will not ever even know who they are, much less ever meet them, just thought I'd memorialize my thoughts here for when/if in the future I'm cursing them under my breath smile

I'm tired now, it's amazing how exhausting sitting in a chair for 5 hours can be..! (By my calculations we should be landing in Paris about now!)...Ohh laa laa! I'm off to find a croissant.


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
#45816 08-15-2005 03:17 PM
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Hello Micheal,

I'm sitting here hoping you sail through the rest of your treatment with little or no side effects!!! You bring a freshness to this forum that is welcome. I have never seen so many replies to one posting. Without realizing it you have become a valuable member of this website. Once your part of this international cyber family your in for life. It's a tight band of brothers.

I wish you nothing but the best,

Love Ya, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#45817 08-16-2005 12:59 AM
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Way to go Michael! I know what you mean about caring and compassionate, we thought the same when we went up to Sloan. However have found folks at Hopkins to be the same, I guess they all must understand what people are going through and do their best to be supportive.

Barry's finishing his first week of treatment today -- we have been moved to 11:30 on the tomo to avoid rush hour as we drive in from 45 minutes away (well, without traffic...) -- so far no side effects but it is early days of course. However take the advice to eat good food now! -- tonight we are having flounder stuffed with crab and shrimp, plus glazed acorn squash and garlic mashed potatoes. NYC is full of great food -- enjoy while you can. Hopefully neither you nor Barry will have to use that d****d PEG but still, flounder and potato smoothies...? I think not!

Gail

Hang in there!

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
#45818 08-16-2005 03:11 AM
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Posts: 102
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Dear Michael,

I probably haven't posted in a year, although I have been reading the discussions here since my Aunt was diagnosed with Stage IV base of the tongue cancer in April of 2003. I had to write though because I do agree with Danny. Your posts have brought life and freshness to the discussions. I think your fighter/warrior attitude is wonderful (!) and I have been following your posts daily. You've made me smile a lot lately. Do know that all of us faithfuls who have been reading this board for years, even though you may not know us because we seldom post-are still rooting for you every step of the way. You are in my thoughts and prayers as I go through my day. I hope you can feel the positive vibes coming your way from Long Island!

For the generous folks who were in contact with my Aunt when she was sad and down from her struggle, my Aunt Rosemary is still cancer free after two years and three months. She had some reconstructive surgery done one week ago to cut many adhesions away from under her new tongue and the front of the floor of her mouth. They added some additional grafted tissue to her original flap and now she's talking almost completely normally. She is doing wonderfully well this time and is feeling pretty darned good already.
We are greatly relieved to say the least.

Keep up the good fight everyone! Every day is a blessing!!

Hugs to all,
Lisa from Long Island


Niece to Aunt Ro- Dx: 4/03. SCC Stg 4 BOT with mets to fl of mth & crvcl lymph node. AdenoC 1 sal gland. Two add. reconstrc. surgeries for adhesions. Recurrence 7/06- Sub-Mand AdenoC. Mets to both lungs. Lost her battle 5/4/07.
#45819 08-16-2005 09:33 AM
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Micahel you so crack me up sometimes. hahahahahaha You know I would love the icing too but alas I cannot swallow the cake. I don't like it without the cake. I am thinking it would not be to good in a blender. Then again I used to have a small cake baking enterprise for several years. Nothing but the finest ingredients in my baking and I do make some killer buttercream icing. Hummmmmmmmmmmmmmmmmmm:D

Glad to see you "off and running" for the victory. My voice is coming back today by the way. If you know any producers that would like a voice that sounds like something from a Star Trek alien let me know. hahahahahaha

Have a good night. Don't overdo and rest, rest, rest when you feel the need to. Since you "did" mention prayer then I will say....

My prayers are with you,
Barb~


[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
#45820 08-16-2005 10:46 AM
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I do a mean Darth Vader, or the penguin from toy story two... Oh the wonders of side effects
Sunshine.. love and hugs
Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#45821 08-16-2005 12:57 PM
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Danny & Gail thanks for the nice words.

Lisa, nice to meet you! Thanks for taking the time out of your schedule to give us all an update!

It sounds like great news!!

You are so close to me in Manhattan...Whew...it's nice the heat wave is over, huh? If you ever make it to the city hit us up...

Barb, the icing is the best part of the cake! And, yes, I can eat it by itself :-)

And prayers are ALWAYS welcome and appreciated!!!

I've been praying much more lately for myself and everyone else here. I guess that's ONE good side effect, a deeper sprituality.

Update from today: Waiting for my puke to hit!

2nd day of poison and burn!

Everything tastes REALLY WEIRD, am sick to my stomach, and feel very "fuzzy". Have been having pretty bad heartburn too....

Already feel like my saliva is changing but I know that is very unlikely on only the 2nd radiation treatment.

At least they haven't killed me -- yet smile

The chemo was a brutal 6.5 hours today and over 5.5 yesterday.

Had a ton of fluids infused...Am VERY TIRED (already!)...going to try to sleep.

I can't believe I'm having some effects already! The nurse said since I'm having heartburn so soon I should expect it to be pretty bad frown

Glen, it was great to see you today briefly, you looked really good! (Much better than the first time I met you :-)

Glad the Computer Worm hasn't shut down this site!!!!

Love and Hugs to all...


Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.
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