| Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I was a Stage IV BOT and I was soooo grateful that I found Moffitt who DID NOT recommend surgery before rad/chemo but said I might need it post Tx which I didn't. Previous to Moffitt I had 3 different docs that did recommend surgery pre rad/chemo. He and his wife are no different than the rest of us when we were newbies to this crap.
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.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Hubby was a stage 4 patient as well and surgery, like in David's case, was only mentioned as a last resort if chemo/radiation did not work. Fortunately it did and no surgery was needed.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | My boyfriend of almost 3 years never left my side, he actually cried when I asked him to go home the day after my surgery because I just felt so awful. He has been amazing through this all, and to say you love someone and not be there for them is horrible. I know how hard it is for them to deal with just by watching my mom brother and boyfriend everytime I had to go back to the hospital. But the worst thing you can do is not be there by their side. I think that is truly the only thing that got me through all of this was their support and by them going into "cargiver" mode. None of them had any training but they took all the classes and refused to let me go into a rehab facility. Sadly though, all to often, loved ones don't know what to do, and they try to hide from it in fear that their insecurities will make it harder on the patient. I will say that Ben (boyfriend) helping me through this and being there for me has strengthened our relationship and we are much closer then we were before. I didn't think it could happen, we have always been so much alike and close, but going through something like this and having someone throw down everything they feel inside just to be there for you is just amazing. I feel sorry for MD that CZ can't do that for him, but maybe she'll come around, at least I hope she does.
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | I think we have all learned the hard way here that cancer does not discriminate. It doesn't care about age, gender,race,nationality,etc. Nor does it care if you are rich or poor. And it hits us all really hard when it enters our lives whether directly or as a caregiver. I just wish anyone affected by this crappy disease the best!!!
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Hello everyone and nice to see so many familiar names around  I have not been on the forum or involved in OC related relations much lately for personal reasons. Those reasons are because at this time I'm helping myself heal mentally even though I'm coming up on 2 years post tx. It was not expected but after a 2nd OC scare early 2010 I had to create a distance, step back and go after those many things I enjoyed in life before any of this happened. As patients and as caregivers everyone here has been around the block more then once--we know what this disease is all about and what it can do...the pain that it causes. Many things in life can and does cause pain--it doesn't have to be cancer. On the flip side, so much more gives us enjoyment..that smile, a laugh...that inner peace. Life can be good...let life be good! And when it's hard for yourself, a friend or a loved one, take life one step at a time and be there when a hand, a hug or a tear is needed. Sometimes kind, thoughtful words can be said, sometimes there are no words to be found but instead a look of helplessness with tears from both sides of the fence that spells out, "It's okay, I love you..." I've been the caregiver and I have been the patient and none of it is easy. I'm not going to lie, I don't want to be the caregiver and I don't want to be the patient. Call me selfish but sometimes it all hurts too much but if you truly need me I will be there in your corner. That to me is basically what we are all about..the people on this board...If we are truly needed, at any given time someone is here to lend a hand, a kind word...advice...a smile...a tear. I go through life not knowing my boundaries and say a lot of the wrong things at the wrong time but the one thing that I know I do not lack is empathy. Every individual has their point of view of what's right or wrong...how one person should act or not. We are all adults that have lived, we all know what we read is not necessarily true...But if it is...SO WHAT! Who am I?...Who are you? To think that we know what's better for that family, that patient, that caregiver to say, act or do what we think they should be doing. We are not hear to criticize anyone...We are here to help--to listen, lend that kind word...that great piece of advice...to tell the truth....The good and the bad. For those who criticize MD...his family or any other person afflicted with OC...That's not what we are about...We're better then that...We're about helping out in some form or another. I love you guys but save the bashing for those occasional snakeoil salesmen that sometimes roll through here...If I offended anyone..Eh? Get over it. Let life be good and when it's not lend a helping hand and a caring heart.
Last edited by Ray1971; 09-08-2010 09:10 PM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | Ray,
You are a kind and caring person, and a valuable member of the OCF family.
We all love you!
Catherine
2mm tumor excised 09/23/2008 (floor of mouth) SCC (superficially invasive, well-differentiated) Stage 1, T1N0M0 01/2009 and 01/2010 - PET/CT clear Four and 1/2 years - NED! "Detection can be easy, treatment is not!"
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Ray,
Welcome back to the forum! I've missed your posts filled with honesty, compassion and empathy. Excellent post - well said and all true.
Remember, we are here for you. You have my number if you ever need to chat, vent or a shoulder to lean on!
And to the subject of this thread - I wish MD the best through his OC journey.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | A welcome back from me as well Ray, I also think your post was wonderful and there were so many ahha  moments for me as I was reading it. Also on the subject..the OCF family are here to support everyone who has been touched by this awful disease.
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Sorry Ray,we all know what OCF is about we have all trodden the path in one way or another and are still entitled to our opinions.This family have chosen to carry out their battle in the public eye,made their statements and appeared in magazines and on television.While i fully applaud the attitude and honesty of the patient and admire his fighting spirit which will no doubt help and encourage hundreds of sufferers,i do think his wifes statements have been neither helpful or supportive to those women who are facing the unknown future of caring and advocating for their loved ones stricken with this disease.If she chooses to make such feelings public,then we are entitled to make comment on them.I for one don't see this as "bashing",and as for so what? ask the men who have said time and again on these boards that without their wives/partners they would never have made it.
I love this forum, have done so for over three years and one of the things i love most has been the honesty and frankness we have all been able to express here.During my year of living with Robin and his illness i rolled with the punches of other peoples opinions which were not always what i wanted to hear,but i never lost sight of the fact that they were given with love and usually the benefit of experience.An opinion(criticism)is just that.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | [quote=davidcpa]He and his wife are no different than the rest of us when we were newbies to this crap. [/quote]
With the exception we are more freely able to join and participate in a public discussion that I imagine he or his wife would be comfortable in doing, just because of their unique situation. I think we can all remember the comfort/relief (insert appropriate emotion here) of finding this forum and being able to participate. Now try to imagine NOT being able to. I don't care how good the alias, I imagine someone would figure it out.
18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
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