| | Joined: Jan 2012 Posts: 17 Member | OP  Member
Joined: Jan 2012 Posts: 17 | Hi, I have stage 4 HPV tonsil cancer. I completed treatment the end of September - 35 radiation treatments and three cisplatin. When the physician tells you that the treatment is one of the hardest cancer treatments, you really can't understand. I was lucky enough to have a sister that was willing to move in with me (from another state) throughout treatment. She's also a home health nurse. She tells me all the time now that she saved my life. She did feedings through my peg everytime I fell asleep. Otherwise, I just threw up. We started this after I lost 11 pounds the first week of treatment (dropped to 134). Feeling much better now and glad to be alive. Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF Angie!
I'm glad that you found our little oasis on the net! What you will find on these forums are people that have had a similar experience as you that you can both draw support from and give support to.
There is no doubt that chemo and radiation are a tough experience and I'm really happy to hear that you made it through and are feeling on the up and up!
Glad to have you aboard!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Angie,
You are so right that when the doctors tell you what to expect you really have no idea. I listened when they described it, but I really had no clue until I experienced it. You have come to a fantastic place for support and understanding. You will find the greatest people in the world here. I'm so glad that you got through your treatments and are feeling better. Welcome!
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Angie, welcome and I'm glad you got through what's undoubtedly one of the toughest challenges anyone can face. That you had your sister to help is wonderful and she too is a hero.
Let us know any way we can help. I'm so glad to read that you're feeling better!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Angie:
Welcome. I, too, had tonsil cancer (treatments ended 4 years ago in February) and other than some radiation after effects, am doing okay. I am glad you found us, and also that you're from Alabama too. There's not many of us on here. Hope to hear more in the futre.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Angie. Treatments sure can be brutal for many of us. Glad you are past that and have started to recover. Best wishes with your continued improvements!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Welcome Angie! Congrats on finishing treatments and now to living life again. Your sister is a hero in my book!
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: 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 | Our recovery can take every bit of 2 years so don't get discouraged.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi - and welcome! Congratulations on getting through it!
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
| | | | | Joined: Jan 2012 Posts: 17 Member | | OP Member
Joined: Jan 2012 Posts: 17 | Thanks David,
I have found myself getting discouraged and a little weepy over the last couple of weeks. I kept improving rapidly and now I'm kinda at a stand still. I'm still having small improvements - I was able to get dressed for work yesterday am without any rest periods. So, my stamina and strength are improving slightly.
Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | | 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 | We all had bad days mixed in with good days during our recovery. Eventually the bad days will disappear. Comes with our Tx but overall your recovery will most likely be a steady stream of improvement. For instance I was to weak to cut my grass until about 3 or 4 months post Tx and by the 9th month I was back riding my bike competitively 100+ miles a week. I saw my first real improvement in my taste and saliva 4 months post Tx but it was not until my 14th month that I really saw my best spurt of improvement. Also most of us dealt with some form of depression post Tx, ranging from almost not realizing it to depending on drugs to help get through it. Hang in there your body has literally been brought to the brink of demise so don't expect to recover as if you are getting over a cold. lol
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: Jan 2012 Posts: 17 Member | | OP Member
Joined: Jan 2012 Posts: 17 | Thanks David,
I'm learning patience. Knowing that it can take 14 months is helpful.
Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I think it has a lot to do with your physical state - and body, you'll get there but at your own pace... 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
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Angie, David's advice and experience are some of the best here and I'm glad they were helpful to you. I second his story of post-TX weakness. I was flat on my back nauseated 24 hours a day for 3 months, and didn't even begin trying solid food for a couple more.
But it does definitely get better. I noticed a big jump at about 8-9 months, although there were small victories of course prior to that.
As my internist told me when I saw him around that period, commenting on the 30 pounds I'd lost and everything else, "You've literally been starving, so don't expect instant recovery." Ain't it the truth!
Of course we're all different, our metabolisms, our reaction to treatments. So there are no hard and fast rules. Take it easy, treat yourself very carefully and life will soon improve!
All the Best to you and your sister.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jan 2012 Posts: 17 Member | | OP Member
Joined: Jan 2012 Posts: 17 | Thanks David,
Didn't mean to sound so blue. I alternate between happy, singing, feeling great and acting silly to having a couple of down days. The down days are when I focus too much on cancer. I start getting scared of my next PET (Jan 16), worried about recurrance and all the other stuff that goes with cancer.
Lately after each doctors appointment, I start shaking uncontrollably for about 20 minutes. It's the wierdest thing -teeth chattering & shaking. I feel fine at the appointments-calm, but as soon as I walk out it starts. It makes me laugh.
Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Hi Angie
Alex suffered in similar ways and one day he realised that he hadn't had a down day for a week. And then it was a whole month that he went without a bad day. The bad days get further and further apart but you may not realise it. Maybe a journal or blog that you write a note about your physical and mental status every day so that you can see your progress?
It is not just oral cancer survivors that experience this - it is typical for those who face a life changing event. Typically, it hits 6-12 weeks later when you are no longer actively fighting the disease by trekking to radiation every day, have no doctor to talk to every week, and your carer has stopped making you the centre of attention and has gone back to reorganising his or her own life(and I mean this in a nice way). You feel "cut loose" and it may even hit you how close you came... You realise that you need to make plans beyond today. This can be an overwhelming prospect.
On top of this there are physical issues - hormones all over the place, fatigue, weight loss, crap nutrition which all contribute. Your immune system will still be recovering and all your energy will be going into rebuilding, leaving little energy for your mental health. Even a little cold may cause a "woe is me" feeling.
But it gets better. The anxiety may never go away completely, but episodes will be further and further apart and less intense as time goes on.
The shaking and teeth chattering sounds like a stress reaction. Alex goes all "two year old" on me which starts as we drive into the shadow of the hospital (eg told the doctor "no" when they tried to look down his throat - what was he there for?). I have told our cancer co-ordinator that Alex is suffering post traumatic stress and cannot sit in the waiting room with a dozen other head and neck patients - many of whom haven't had the same positive outcome Alex has. How barbaric!!!
But back to your reaction - very common to have the reaction after the event as the adrenalin leaves you. There are medications you can take or you can ride it out depending how awful it is for you. Also plan to sit down somewhere nice afterwards to let it pass. Breathing exercises maybe? Just knowing this reaction might happen and that it is to be expected, may be enough for you to manage it? If not, find a counsellor who will help you with coping techniques. Hopefully the reaction will lessen with time as you become more used to your appointments.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Angie - I'm so glad you found this great place to be! You know, any kind of a change, even if it's a good change, brings a certain amount of stress. After my son completed his Tx, we had that "what now?" feeling We were so used to going to the hospital every day for Rad Tx and now here was another big change! Any kind of change takes getting used to until you get to the point where you have a familiar routine to depend on. I would certainly explain to the doctor exactly how you feel at appointments so that he can make suggestions or prescribe something for you if necessary. How wonderful that your sister could be with you to care for you. You should be proud of yourself, too - for coming thru and surviving one of the hardest things in life to experience!! Things do get better! - each at our own pace. Come back and let us know how you are doing.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Jan 2012 Posts: 17 Member | | OP Member
Joined: Jan 2012 Posts: 17 | Thanks Karen,
Wonderful advice. I feel better already.
Angie
51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
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