| Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | He was fine last night. No problems. I thought he looked pale though. Haven't seen him yet today as we were both at work. I didn't talk to him and he didn't mention anything. I don't want to keep pestering him about how he feels, so I'm trying to limit it to evening questions about his day.
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Jul 2011 Posts: 25 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2011 Posts: 25 | I had 7 weekly treatments with Cisplatin, and 7 weeks, five days per week of radiation. No surgery. I'm 16 months out now and am doing pretty well. Some do worse. Some do better. I had a PEG tube for 4 months. I was lucky there. But be prepared for many months of total misery. As the doctors kept telling me: "you'll be miserable but you'll get throught it." I was and I did. I eat most things now but still have oral issues (swallowing, dryness, tasting, tongue issues) but overall get along ok and lead a largely normal life.
Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I had TPF induction chemo ..Taxotere, Cisplstin and 5-FU in 2009, which hospitalized me for 6 months, paralyzed from the waist down for 10 months, lost 100 lbs, blinded in one eye, and almost died. I stil have severe side effects three years later..severe neuropathy..lucky to walk one block, need epogen shots and tranfusions, and many more with hundreds of dr visits. It's very effective, controversial, and has good response rates with HPV, but I would not have done it, being what I experienced, and know now that it's very toxic, and can delay your treatments for the real curative, and that is radiaton. It delayed my completing treatments by a year, and most drs believe it's a cause of my recurrences. Everyone is different, and responds differently, but this wasn't for me. I went from from working full time, being physically active at 48, and after only 5 days induction chemo was disabled.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | PaulB - I'm so sorry you had to go through all that! Do you mind if I ask questions about your experience? If you do, I certainly understand. If it's not too difficult for you, can you tell me how your symptoms first started that caused you to be hospitalized/paralyzed?
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | Day 2 of chemo - minor fatigue. So far so good!
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | 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 | Drink plenty of water (minimum 48 oz) to flush the chemo out of your system. Chemo can be very hard on the kidneys. Drinking extra water will help to avoid kidney issues down the road. 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | No problem..I was physical fit, but not the gym rat I was once, but was doing lighg exercise in the hospital during treatment. For induction chemo, you are hospitalized for 5 days. On the 5th day, I was discharged, and even walked out, refusing a wheel chair. When I got home, I just started feeling bad, diarreah, and could hardly walk. I had to call an ambulance to go to the local hospital ER. Was there for two days, and once when getting up I fell to the ground. I think it happened again, told to stay in bed, and noticed my legs started to have limited movement and then none. Next thing I know, I 'm going to ICU, and was in and out of consciousness for the next month and a half. I had every ailment..sepsis, septic shock, disseminated candisis, lung collapse, renal failure, high blood pressure, low pressure, and more, and all my fingernails, toenails came off..ouch, burns on my face, mouth, inside mouth, and on hands. They were going to put me in the burn unit, but opted to treat me in the room..peel some skin off. I was in the hospital from Nov 22nd to May 7th in isolation, unable to walk, eat. When I got out to go home, I was supposed to go to the nursing home, but did not. After that, and to this day, just have had several hundred dr visits, tests. I have 6-7 doctors, and go to one at least one a week, someones 4. I wore no glasses before Chemo, totally blind in one eye now from Chrmo causing optic ishemic neuropathy, which led to neovascular glaucoma, and trying to save my other eye.
I was looking at the cause of the paralysis, doctors have no answer, and hate to blame the beloved chemo, just saying I was too weak, but I found that galium barre virus causes paralysis, usually started in the feet and up. The virus usually starts due to stomach bacterial infection, which I had. Thete is no real test for this except a spinal tap.
The doctors have no answers, expect my local Onvologist, who didn't treat me, said I was given too much chemo at the other institution.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2012 Posts: 51 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2012 Posts: 51 | The 3rd round of chemo is done with very few side effects. Slight fatigue and nausea. Paul also has a sore mouth but not enough that he wants to take anything for it. Food doesn't taste the same. All in all, chemo has gone much better so far than we anticipated.
Today was the simulation for radiation. Radiation is scheduled for December 3 and chemo treatment will be reduced to Cisplatin only. Praying our good luck continues!
Diane-wife to Paul, age 55 DX 9/17/12 HPV/SCC/BOT Stage 4a Non-smoker/casual drinker Otherwise healthy 9/24/12 Cisplatin, Taxotere,5-FU - 3x 12/3/12 Rad x 35/Carboplatin x 3 1/15/13 DVT upper thigh Passed away 1/23/13
| | | | 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 | Chemo isn't normally too bad... especially in comparison radiation. Rads has the tendency to lay you flat... your hubby sounds like he's doing well. Best of luck with the radiation.
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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