#97208 06-12-2009 02:45 PM | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | Just to let you know, I am now down to only two weeks of rad treatment left. What a difference a week makes! My neck is now the brighest shade of red I have ever seen. It is painful. I have some type of new prescription creme to use on it. I hope it works! The Rd DR now has me on fentyl [not sure of the spelling] patches for pain. The liquid pain med I was taking started to burn my throat every time I drank it. I have lost 24 lbs so far, but everyone on my medical team says they are not concerned, due to the my current weight, the fact that I am still eating by mouth, all of my blood work looks good and I am so close to the end of treatment. Who knows what the next two weeks hold, plus the weeks on the down side? I will keep posting as long as I can. Thanks to you all for your support.
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called 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 | Every Friday I look for you weekly update. You are doing great!!!!! Keep up the good work and it will all be a distant memory very soon. Please keep checking in even just for a short post.
Im not that far away, if you need a hand with something, let me know. 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: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | I was looking for your posting also; hope those patches help.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | You are almost finished, but for most the hardest is yet to come, hang tough and keep up the good fight!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: May 2009 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 113 | This was the post I was looking to find since I have been on this site! Awesome! I am about to begin my journey in the next 2 weeks as well. I have pretty much decided against doing the 3 cisplatin doses as I just do not feel that the extra 5% boost is worth all the long term side effects! I am very excited to read your next couple posts! I too am from PA (Harrisburg) but like a lot of people transplanted to Florida. Good Luck
30 yr old M non-smoker (stuborn ass italian) SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09 Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread) Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo "On the long road to recovery 1 step at a time" | | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | ChristineB,
Thanks for your kind words. I'll keep checking in, promise!
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | mgmichael,
So far, the patch is doing NOTHING for my throat pain. Hopefully, it will get better.
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | Bob,
I will continue to do my best in the coming weeks. I am getting tired, but now it is time for me to dig down and find some more fight somewhere in my body. Don't know if you pray Bob, if you do please include me. Thanks!
Last edited by wfc; 06-12-2009 05:24 PM.
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | wfc
you may need to up the patch potency. they come in 12,25, 50 and 75 mg doses. first time round the 25's worked okay but now I am on 50s. Bear in mind that it takes at least 24 hours before the fentanyl gets into your system at full strength. Plus I change my patch every 48 hours not every 72 hours, on my doctor's orders. I found out that they never lasted the three days for pain relief. Be sure to contact your doctors as getting pain relief is an important part of healing. 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 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 | wfc,
Keep hanging on. In no time you will be posting from the post side of treatment!!
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 |
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | THe patches didn't do anything to pain for me. maybe they just don't work for all of us. Like most things do the same . I need extra anesthesia to put me out so I guess I am different.
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: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Jim: During your appointment at Moffitt, you may want to ask about Tomotherappy. I'm sure they have a machine. The radiation is much more precise than the IMRT with less scatter. The primary use of this machine is with solid tumor cancers. It may be worth asking the questions. Sandyst
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Jim I am just a little bit worried about your line"i have pretty much decided not to do the 3 cisplatin"
while i am a great believer in being your own advocate,i also think if Medics advise a course of treatment its a good idea to respect their expertise if you are confident in their qualification to treat you.Rob was never offered chemo,which at the time i thought was great news and meant his dx wasn't as bad as some people weknew at the time.He had a recurrence 8 weeks after finishing all his surgery/treatment and was offered no further options.i often wonder if this would have happened if he had been given concurrent chemo and the guys going through this crap at the same time as he was are still here to tell the tale,and had much worse initial dx than he did.I know some people take the view point that chemo can be held in reserve if the worst does happen,but sometimes if the worst does happen its too late.
I guess what i am saying Jim is throw everything at it you are offered .A few weeks of crap is better than the alternatives.
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | wfc, definetely listen to what Charm posted about the fentanyl he's dead on there. I've been on the patch for about a year now and am finally able to start dialing down and getting off the stuff. The patch works by heat and changes in temperatures can cause more pain meds to be released and have it run out sooner, I generally get around 60hrs out of my 72 hour patch. It's really addictive as well so I carry backup pain meds wherever I go because I've been caught dry and started going through withdrawels...pretty nasty stuff but it does the trick for my pain.
Keep your chin up man and good luck to you, for me going through chemo/rads tx was the hardest part. If I can do it I'm sure you can man.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | I liked what liz had to say as well and totally agree with her
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Apr 2009 Posts: 128 | EricS,
The fentanyl did nothing for my pain, so I am off of it already. I went back on the oxycodone liquid. It burns my throat for a few seconds, but it works for my pain and that is all I am concerened with. Good luck to you Eric.
Age 57 at dx on 3/30/2009 by Dentist SCC of R tonsil S2 Poorly Differentiated - 2.5 cm Rad - IMRT 5x a wk for 8 wks starting 5/4/2009 No Chemo Last Rad treatment was 6/26/2009. Two years down as of 3/30/2011! God bless all affected by this monster called cancer!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | WFC,, it didn't even burn my throat I've had stronger cough drops. But that doesn't mean they are no good, just that I need other narcotics.
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
| | |
Forums23 Topics18,168 Posts196,925 Members13,103 | Most Online458 Jan 16th, 2020 | | | |