#5800 07-20-2005 02:12 PM | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | Hey guys...Rod had his check up today with the ENT. Have to admit, I was a bit nervous, I can imagine how he felt.Anyway all went well! Doc did an exam with the scope and made Rod take out his dentures for a good look around in his mouth and said everything looked great! He will now move to a six month check! Praise God! His weight is still hanging around 126 but he can live with that for now! Just a quick note though, the ENT said about 90% of recurrence happens in the first year and a half???I am always hearing something different...but you know what... I'll take the good news we got and hold onto that! God bless guys & thanks!Maureen
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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#5801 07-20-2005 02:30 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Maureen, That's a great milestone. Your ENT is about right with the numers. 80% of recurrences occur in the 1st year, 15% in the 2nd. So statistically at the end of 2 years the risk of recurrence drops to 5%. Don't worry about the weight unless he is losing it. When I was at 109lbs the doc told me "in 2 years when you fat we will laugh about his". Now I have to watch what I eat.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#5802 07-20-2005 06:21 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2004 Posts: 316 | Congratulations are in order for you both!
I'm still on 3 monthly - radio finished on March 04 - waiting eagerly to be given the 6 monthly.
Cheers!
Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#5803 07-20-2005 07:10 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Congratulations Maureen and Rod. What a memorable day for you both - kick up your heels!! Love from Helen
RHTonsil SCC Stage IV tx completed May 03
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#5804 07-21-2005 12:56 AM | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | Thanks so much everyone! When I woke up this morning, I was still soooo happy...I said a quick "thank you" prayer!I am praying for the the same for all of you! He might come up for a visit...myself & his family are hoping so. He needs to get away from those hurricanes in Florida!LOL Unfortunatley though his mom was diagnosed with breast cancer approx. the same time he was diagnosed last year. She had a double mastectomy last summer & then this past June found another lump under her arm which was recently removed.She is doing better now and it would be so nice of him to visit her!! Gary, Thanks for the info. I'm sure it doesn't make much of a difference but do you go by start of tx or after it has ended? Or is it after everything including all clear on pet scan? Also after tx, when did you notice that you were starting to put on some weight? It seems like every time I call, Rod is always eating!LOL He is small framed but another 10-12 lbs would be nice!!  Thanx so much! Maureen
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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#5805 07-24-2005 03:44 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Maureen, I haven't been around lately because I have been so doggone busy but I was so excited to hear the news so I had to say something. I know the road has been rough for you and Rod but I am overjoyed at the great news. He is so fortunate to have you with him through it all. Don't believe what Gary's doc said about laughing when you are fat in 2 years. I hit my 2 year post diagnosis (fat) anniversary a couple of years ago and I wasn't laughing at the 60 lbs I have put on since March  . I did manage 2 hours or so in 100+ heat today working on the yard so it's all good...except the fat stuff! Funny you ask about the measurement point for the 2 year BIG hurdle. My wife was just telling someone today at church that we are praising Him for reaching the 2 year mark and I mentioned it isn't really 2 years until October 8. You can start counting when you want and years from now, you won't even remember the date. Best wishes. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#5806 07-25-2005 02:35 AM | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | Ed,
Thank you for your kind words. I don't know if I mentioned this on the boards but Rod is actually my ex-husband. We didn't make it as a married couple but we are the best of friends, met when I was 13 years old.I could never ever let him go through this alone. We have some kind of connection that I can't explain.I have since moved on with my personal life and I have a wonderful man who is secure with us and supports my friendship with Rod and knew that being there for him was something I needed to do.His family wasn't the best for emotional support and the girl he was dating left in the middle of treatment???? I pray everyday that Rod finds happiness and continues to beat the big "C". About the weight, Rod has always been small. The most he ever weighed was right before he got sick(around 145lbs) and I think that was a little beer gut...lol He always had a hard time gaining weight so I think now it will be even harder. He works everyday in the Florida heat and I know he has a very high metabolism.I think he might have put on about 12-14lbs in a year but he was only about 110 after tx so it doesn't seem like much looking at him. Although, I have only seen pictures, am hoping for a visit this month. Congrats to you also! Oct. is right around the corner! Will pray for your continued good health!!I hope you are right about forgetting the date! I can't wait until that happens!!! Rod is doing very well though, and for that I praise God everyday!God bless!!!!:)and thanks again for the support!!! Maureen
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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#5807 07-25-2005 03:21 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Wonderful news Maureen. I know when we hit that two year stage we were over the moon...it`s like holding your breath for two years!
Congratulations to Rod. Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#5808 07-25-2005 04:30 AM | Joined: Aug 2004 Posts: 100 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Aug 2004 Posts: 100 | Marcia, Yes..it definately is....I will probably go crazy waiting for this year to pass!Thats a shame huh? The first year was pretty tough, but we made it!Rod is doing better than I am...he told me yesterday I needed to relax and LIVE!He says there isn't a day that goes by that he doesn't think of recurrence but it gets less & less everytime he gets a good check-up.He feels his nodes in his neck weekly now instead of everyday like when he was first out of treatment.His anxiety isn't as bad and hopefully that will rub off on me!LOL Thanks Marcia for the support!God bless & continued good health to Pete!Maureen 
maureen (friend to Rod SCC tonsil diag. Mar 04 stage 4 -concurrent rad. & chemo) Finished tx July 04
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#5809 07-25-2005 09:14 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Marica, I suppose technically, Pete hits the magic date on 08/03. Finally, I am not missing one! I am so happy for you and Pete. I hardly ever drink my Sencha Hikki (green tea) without thinking about you.  How funny. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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