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Joined: Sep 2006
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I don't want to be that dark cloud but just remember that the 2 to 3 weeks FOLLOWING the end of radiation are usually the worse weeks of all. I only say this so if it happens you can be prepared for it AND you can "comfort" him by telling him all is normal.

I have said all along that the mental aspect of this cancer and treatment, etc is at least 50% of the battle and in my opinion regardless of how tough it gets, it's comforting to know that everybody else had the same tough time and the vast majority of us are here to bitch about it.


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: Mar 2008
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Patient Advocate (old timer, 2000 posts)
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Joined: Mar 2008
Posts: 3,082
Actually the entire month after all my treatments was the worse, as I had not found OCF and did not realize just how BAD even though the burning and poisoning stop. Yeah the doctors' mentioned it, but did not stress it enough.
So be prepared and not discouraged when it happens. However, let me add that you cannot imagine how GOOD it can get a year later. Hang in there and read some survivor posts especially the anniversaries. You both have reached an important milestone, sort of like the 20 mile mark in the marathon, where everything hurts but you can finish. ( I used to laugh when my medical team would use marathon analogies as they had never even run one, while I had done four)


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Sep 2008
Posts: 49
MS T Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Sep 2008
Posts: 49
Charm and David,

Thank you for reminding me the road ahead is still long and there are many turns still ahead. ~grin~ We are prepared. Well, as best we can be. You can only take one day at a time and one week at a time. And altho we had some hypersensitivity issuses to chemo and meds this week it was still a good week! We are so happy for today and will remain optimistic no matter how hard it becomes because I too believe that your determination and power of positive thinking has a lot to do with recovery and overall well being. We will not let some insidious disease take control of our lives or our outlook of all that is beatiful in this world. even the littlest victory is worth celebrating.
I too know that after tx there are still gonna be an unmeasureable span time yet to get thru before he really starts to feel as tho he is truely recovering form all the "poison" they put into his system. I only just reminded my daughter ( who plans to visit one week after end of tx) that it is unclear what to expect. I had to put on the pessimistic hat ( which is not normally my charecter) and advise her she may be shocked or even very upset to see her father who is usually so strong and viral looking pretty weak and fraile. It was hard thing to convey to her but she must be aware that no matter how well he is doing diagnostic wise he most likely won't look like it. She hasn't seen her father since after his surgery in July and a lot has transpired since then. I can only hope that she is ready for this.But she is a storng young woman and I'll be there for her if she needs to cry it out some.
Time to run. Tx 22 awaits. ~Ija~


Ija wife-husband 47y healthy nonsmoker,nvr chewed.Dx SCC 01/05 primary left anterior toungue w/2 surgeries 02/05 no rad/chemo recurrence 12/07 no rad/chemo. 07/08/08 modified lt radical neck disection 3 nodes removed 2 pos SCC. TX 090808 taxol & carboplatinx7 radx37 w/ethyol.
MS T #81985 10-13-2008 06:35 AM
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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I will never forget the day that my son came to see me when I was one week post Tx. I was really sick and weak and he hadn't seen me in a month. I didn't think I LOOKED that bad but as soon as he saw me he teared up and that really hit me hard. My point is, tell her not to show her emotions as that can't help him one bit.


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.
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