| Joined: Jan 2010 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2010 Posts: 31 | We're new here. My husband (68, non-smoker, non-drinker) was diagnosed with tonsil cancer after neck dissection after Christmas. Stage IV. 10 of 21 lymph nodes diseased. We are blessed with a CCC at UAB in B'ham, AL. Got his PEG last week. We will begin treatment - cisplatin and radiation tomorrow. We are shaking, to say the least. Please, if you have any first-day advice, send it our way. Thank you in advance, and also for this most helpful site.
Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
| | | | Joined: Jan 2010 Posts: 24 Member | Member Joined: Jan 2010 Posts: 24 | Jim and Deb - I'm new here too. My husband was diagnosed Jan 8, 2010, didn't realize it but it's the one month mark (not gonna call it an anniversary) today. We're kind of doing things a little backward from you all. We started chemo first - planning on 4 rounds, round 2 is this Wed. Thur. and Fri. then rads X 35 followed by surgery (if needed). I'm sure you've poured over the pages as I did and continue to do - keep reading. Keep a journal. Write everything down that the doctor tells you and go in with questions. Keep asking questions here - you will get answers. God Bless and best of luck tomorrow.
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete Stage IV SCC BOT, bilateral lymph involvement DX 01/08/2010 Taxol, Cisplatin, IFEX Treatment completed 6/2010 - all clear | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Jim & Deb,
You may have already heard this but load up on eating while you still can. It will be a bit before he can't taste much, and the chemo may make him not want to eat, but eat what he likes, and lots of it, now.
Other than that: this is a one-day at a time process. I found the best thing to do was to come here often. I was never surprised by what was happening to me in treatment because I had seen it all discussed here beforehand.
Use the search bar on the upper right hand of this page to see posts about almost any subject here and go to the OCF home page for loads of additional information.
So my first day advice; load up on food and information.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Jim & Deb. I had rads and chemo together and the best thing to do is try and relax. Getting them done isn't as bad as it seems no matter what you have heard. If you go in happy with good thoughts, it isn't bad at all. To me getting the mask made was the most uncomfortable because the form that goes on your face is rather warm , but not warm enough to burn your skin. I idn't mind getting either but I am a happy go lucky type of guy that likes to make people relaxed and leave them with a smile. Actually, the rads don't take long so you will be fine. Good luck with evverything and keep an upbeat mind. The worst I had was radiation seed implants but they are kind of rare it seems but they say I needed them .
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 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | i second everyones advice to eat, eat, eat...and eat more. his first couple of weeks should be okay. his energy will be zapped quick so he will be resting alot. im glad u found this forum...welcome! it is a great tool to help yall thru.
keep us updated.
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | my future FIL is about to end the same kind of treatments you guys are about to start. he slept alot, he falls asleep while we're talking with him. just let him rest, its what he needs.
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I remember those days, two years ago this month I started chemo/rads. In ways it doesn't seem so long ago...others a distant memory. I wasn't nervous or anxious in anyway...just knew I had to get it done, it was a step I needed to take to get to the end.
I tried to be active all the way through, the last few weeks all I remember feeling is tired. Take it one step at a time and don't let fear in, you'll get through this. Keep your mind and heart filled with positive music, books, movies etc and keep to hope!
Best Wishes
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: Mar 2009 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2009 Posts: 32 | Attitude, attitude, attitude. I know it's not easy but remember, Jim, that Deb is your lifeline and Deb, remember that Jim is going to have good and bad days. Neither one of you should take anything personally. You both are suffering but I bet you both are strong and you will get through it together. Keep as positive as you can and this too shall pass!
Best to both of you in fighting the good fight. There are better days on the other side.
John Retired US Government (DoD) Age: 61 SCC/BOT discovered neck mass 11/08 Removed neck mass 09/01/09 Final Diagnosis after scoping on 02/08/09 Chemotherapy and Radiation: Paclitaxel and Carboplatin, 8 weeks of chemo (1X weekly) and daily radiation both sides of neck). First treatment 03/02/09
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | ahhh yes. as john said--dont take it personally. this treatment is very hard on the patient. it will be tough on u as well. jim will lash out and since u are there, u will be the target. i was on here several times in the caregiver forum complaining about the "lashings". unfortunately, its all part of it. but u have to remember that is isnt personal. at some points, i had to repeat that to myself several times a day.
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Jan 2010 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2010 Posts: 31 | To all of you who replied - Thank you so much for the encouraging words. It's so good to hear good things! You really made my day. Jim did well yesterday, his first day. We were so excited to put that big black X on the calendar! He had 2nd rad today. He takes an Ativan before to help deal with the mask. Tomorrow it's more fluids and anti-nausea medicine through an I.V. then radiation. Thanks again. Blessings, Debbie
Debbie, 53 wife and caregiver to Jim, 68, non-smoker, social drinks only. Stage IV SCC rt. tonsil. HPV+. Neck dissection 12/29/09. Peg inserted 2/2/10. Cisplatin and rad started 2/9/10. Carboplatin given 2nd round. 3rd round cancelled due to toxicity. Finished 30 rad treatments 3/23/10.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Hi Debbie and welcome to OCF. I did not have the same treatment but I've been on the forum for a while so I know it's not easy. I'm sorry you and Jim are dealing with this but I'm happy you found this forum..it will help a lot.
I just wanted to welcome you and to let you know we are all here for you and Jim to support you both through this hard time. It's just as hard for the wonderful caregivers too. Us patients know that!! It's nice to have you here:)
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Jim & Deb Insist on a TSH level blood test for thyroid so you have a pre-TX baseline on what is normal. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth. I hope you never need the results of this pre TX test good luck charm 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 2009 Posts: 53 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 53 | Hi I have just recently finish my 4 Chemo and rads 35
I would eat as much as you can now as you willm oooose your apitite and have a lot of flem in your throat I did not have a Peg I just had a nose tube.
The worst your going to have is to try to find the right drugs to stop your nausia then yuou will breeze through your chemo also.
I am now in a state of tiredness and trying to eat by montn 1 month after treatment I eat what I can and drink lots of Pomogranit juise with Grape juice.
I can drink flavered Soya but not milk it brings back the flem you do not feel anything with the rad and after the second day your havee to fight off the 48 hours sickness
eat now as you wont want to later good luck
Its not so bad if you keep coming here and ask questions all can be answered.
teacher Jon
"Base of Tongue Cancer", may be HPV cancer. swollen lymph nodes, half the tongue base Now T2/3 N2 MRI scan and simulation mask, 4 Chemo/35 rad of 35. Tumors gone. can eat. MRI April 19th , Nodes now all gone, was 6 cm, weight GAIN to 81 kg but found 2.1 grey area on MRI. Biopsy next.
| | | | Joined: Sep 2009 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 60 | Jon, It does my heart good to see you move from needing support to offering it. Keep up the positive attitude.
Flip _________________________________ Age: 54 SCC Tonsil + 3 nodes Radiation and Carboplatin Treatment 4/1 - 6/7/2009 No surgery, no PEG Never smoked Drink socially (brew my own beer and love wine. A bottle of scotch lasts me a couple of years) CT 11/4/09 No sign of envolvement in Tonsil or nodes
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | isnt it amazing to see us that evolve from being needy to helping those in need. just another reason i love this site! (((smiley with a heartbeat inserted here)))
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
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