| | 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 just don't think we can fit even a majority of people getting treated for OC into a mold, whether it be how they will react during Tx or how they will recover post Tx. First off all of us are unique individuals with our own physical and mental makeups. Add to that equation pre Tx major surgery to no surgery; many chemos to no chemo; radiation (IMRT to RT) up to 72 gys spread over a different targeted path; Peg tube vs. no Peg tube; and I'll throw this in HPV+ vs. HPV- cancer. What I think we should be telling fellow patients, caregivers and concerned bystanders is what we say many times...we can all react differently and that the Tx can be anywhere from a inconvenience to a nightmare and that the recovery can take a very long time, even years. My point is that I don't want anyone to feel as if they are not "normal" during or post Tx and what is "normal" is up to them. Everyone has enough to deal with without feeling that they are not dealing with the Tx or recovering "normally" because something additional may be wrong with them.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Good point Lani. You have me laughing. Thanks for the cheer-up.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | David, we are getting wrapped around the axle here in semantics. My point is that when people ask when they will feel better, it won't be only six weeks out from radiation...
However, you should be discussing this with Brian ("It takes longer than you might expect. About one month of recovery for every week of radiation until you start feeling like life is normal (albeit a new normal) again.") and Gary ("Many times it has been said that it takes one month of recovery for each week of radiation.") as they are the ones I am parroting and am in agreement with -- As always, YMMV!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Feeling better and the time to do so IS somewhat variable. There are no absolutes in cancer. But after talking with literally hundreds of patients now, the week/month thing is about right. It is also a function of the number of grays of radiation that you had, and other collateral damage or ill health issues that you have and age. But I will stand by the timeline given all the people that I talked to. David was one of the lucky ones, and there are a few, but I would not call him typical in so many ways. Bottom line is it is going to happen at a speed which you will have little control over, so thinking about it isn't going to change how fast your body deals with radiation sickness etc. Just try to get back into life at steps that seem reasonable - walk around the room, get out of bed, go out in public, try to eat new things, etc. etc. Those things you can control. Your biology you cannot.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Nov 2008 Posts: 17 Member | | Member
Joined: Nov 2008 Posts: 17 | i see this posting closed for about a year. but should you visit again, i would be anxious to know if you did the trail studay. i just started it 9/15/10. 200mg/day - Tarceva/Erlotinib. i would be interested in hearing about someone elses experience on this drug. i should have surgery for the removal of the turmor in about 3-4 weeks. but i would like to know how other's performed on the drug.
thank you,
julie | | |
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