| | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | I concur with what everyone has already said, it will get better. Since I have nothing to add, I wil just give you a big ole' cyber ((hug))!!!!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Jon,
Just want to add that a woman two years older than I am was, who is from my town originally, was diagnosed shortly after I was. She has had a much rougher time than I have had and has a trache and a feeding tube. She actually had a recurrance so is still having chemo. She can't eat or talk (she uses a computer to communicate) but she doesn't let it get her down. She goes out, attended her high school reunion, and keeps very busy. Her emails to me are very upbeat and positive. She is really an inspiration. She is living her life to the fullest and certainly hasn't given up.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Hi John, I wasn't the patient, my brother was. I was good at being a support person, but I KNOW I couldn't have withstood the radiation treatment if it had been me.
From my perspective he had a terrible time, but probably no worse than most on the forum. I spoke to him 2-3 times a day, and he would often say he felt he had been massively assaulted,and that he was separated from everyone else, that no-one could truly understand the brutality of the treatment (on top of the normal distress of a cancer diagnosis). I certainly agreed with that, and tried to get him onto the forum where people DID understand, to no avail. He truly felt "struck down".
And now he's seven months out and doing great, with only the lingering annoyance of a dry mouth.
I'd concur with Christine's suggestion about hydration and drink at least 2 litres of water a day - this was critical to my brother's recovery as he also had a kidney condition; try to go for a walk everyday, and consider klo's suggestion seeing about some medication.
John, dear, you will get there. Make your reference point for improvement what you were like yesterday or last week not what you were like before treatment.
Last edited by samkl; 06-16-2012 05:59 PM.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Jan 2012 Posts: 3 Member | | Member
Joined: Jan 2012 Posts: 3 | John,
I hear what your saying. I'm only a month ahead of you in this nightmere. I have had the same issues with mucus and not being able to talk. I used Siri on my phone to talk to my family and Dr.'s. Everybody says it will stop but I also wondered what if it doesn't? Well two weeks ago the mucus stopped. I can now talk! Now I'm dealing with dry mouth. I'm still using the PEG but have cut down on the amount I put in there. I am now eating some food but it is a real challenge trying to find something that tastes ok. I have even been doing some yard work. I get tired very easilly but my energy is getting better also. If I look back I can see how much I have improved. Hang in there.
Age 49 @ Dx
12/1/11 noticed lump in neck
1/6/12 excision 2 nodes Dx SCC
1/11/12 PET Dx SCC BOT
1/17/12 Biopsy BOT HPV+16
1/30/12 PEG installed
2/13/12 start Cisplatin X3 RAD X35
4/2/12 end RAD & chemo
7/2/12 PET Clear
10/9/12 PEG out
1/02/13 CT scan clear
7/08/13 CT scan clear
| | | | | 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 | Doug, not to change this thread but I found sweets and anything with gravy or sauces satisfied me the most in my early recovery stage. I also drank a can of VHC with milk (half anf half) with each meal to boost my calories and essentials. I tried for 3000+ calories a day.
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: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | [quote=Doug G]John,
I hear what your saying. I'm only a month ahead of you in this nightmere. I have had the same issues with mucus and not being able to talk. I used Siri on my phone to talk to my family and Dr.'s. Everybody says it will stop but I also wondered what if it doesn't? Well two weeks ago the mucus stopped. I can now talk! Now I'm dealing with dry mouth. I'm still using the PEG but have cut down on the amount I put in there. I am now eating some food but it is a real challenge trying to find something that tastes ok. I have even been doing some yard work. I get tired very easilly but my energy is getting better also. If I look back I can see how much I have improved. Hang in there. [/quote]
Thank you. This is exactly the kind of hope I needed. Still struggling with the idea that it will ever get better. :0/
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | I'm having one of those days where I just don't think it will get better. That this is it.
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, John
referring back to my email updates that I sent out last year for my husband, I find that he was still pretty miserable and frustrated three-four weeks out, but was noticably better at five-six weeks out. Don't lose faith - it takes time to heal.
Best wishes,
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Feb 2012 Posts: 117 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Feb 2012 Posts: 117 | [quote=Maria]Hi, John
referring back to my email updates that I sent out last year for my husband, I find that he was still pretty miserable and frustrated three-four weeks out, but was noticably better at five-six weeks out. Don't lose faith - it takes time to heal.
Best wishes,
Maria [/quote]
What got better for him?
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Everything gets better slowly it just takes time.. Everyone heals at their own speed. I remember I had the mucousy post nasal drip - it would hit the back of my throat and feel like acid. Then one day I cringed knowing what to expect and it didn't hurt. It does get better - hugs!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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