| Joined: Apr 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Hey to all ! I am currently in treatment for SCC of the vocal cords, Stage 1. I have completed 27 IMRT treatments. My concern, dumb as it is, I do not seem to be having the side effects that just about everyone has. I can still eat, my voice has actually gotten better. I even asked my RO if he was giving me enough "juice". My TX are 5 days a week and the current plan is 39 total treatments. No PEG. I feel terrible after reading so many posts about the difficulties other people are having. I an just afraid the TX may not get the cancer if I am not having the side effects.
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
| | | | 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 can all react differently to the same Tx and by my estimates of the people that come to this site is that 10% "breeze" through, 10% really have a horrible time almost from the get-go and 80% of us just suffer pretty bad from about week 4 thru 2 to 3 weeks post Tx. My Dr Trotti, RO at Moffitt estimates from his client base 1/3, 1/3, 1/3. We may see more in my 80% class since more people would come to this site in need of help than perhaps the general population? Chemo can also make a real negative difference in our concurrent experience and certainly pre Tx surgery can add to one's negative experience as well.
Anyway, whatever class you fall into and for whatever reason, enjoy not having the bad reaction many of us do.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Baymomma,
Count your blessings and don't feel guilty about posting your outcome. There are many who come to these boards who need to see the whole spectrum of treatments, effects and outcomes. Some posts are very hard to read and others are very encouraging. You�re an encouraging poster.
I did almost as well as you, and am back to just about normal 6 months out.
Keep us up to date on your progress
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 | Keep up that attitude and you will be fine. We are all in your corner.
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: Apr 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Thanks to all for the replies. I actually had lost 1/4 lb yesterday at the doc. I am still + 2lb since I began treatment. Doc thinks that is one reason I have done so well, I took the whole nutrition thing very seriously and eating anything and everything I want ! LOL In the middle of all this my husband was diagnosed with Peripheral Artery Disease(PAD) and has had 2 stents put in his leg. Another round to go in his other leg. I know I can get through this after seeing what a difficult time so many on this forum have had. The thing that really scares me is a reoccurrence . I am sooo lucky that mine was in my vocal cords and early and I have only required RT.
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Welcome Baymamma: You will love this forum and the vast information and help you will receive. Nice to have another Alabamian 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: 6 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: 6 | Welcome to OCF. Its always so nice to hear from someone who is getting thru this easily. Makes others realize that it isnt so bad for everyone. Best of luck with everything, hope you continue to sail right thru. 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 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Thanks ! It is nice to have another person from the south. I am originally from Huntsville in No Alabama. We "retired" to the Gulf Coast. The other thing about all of this is giving up the smokes after so many years. They are no longer an option but on top of going through this scary illness, I had to quit those too. Makes it tough but I am determined. It really does help to read all the stories and info . Julia
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
| | | | Joined: Apr 2010 Posts: 24 Member | Member Joined: Apr 2010 Posts: 24 | Baymamma,
What part of the Gulf Coast do you live on... My Brother and Parents both live in Orange Beach and we get down ther quite a bit from Atlanta... I love it down there, my brother owns a sailboat and runs sailing charters....
Nice to see you found this board, this is a great group of people...
Tommy
Tommy
Initial Staging T1N0M0 Invasive SCC of the R Lateral tongue Moderately Differentiated Evidence of Perinureal Invasion Depth > 3 cm Diag on: 03/25/2010 Partial Glossectomy and Modified Neck Disscection on 04/21/2010 Clear Margins/No Radiation or Chemo Age 40 Former Smoker Quit 1/03/2010
| | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | This post just made me wonder---I noticed that most people get somewhere between 30-35 rounds of radiation. But is there a standard amount that is given? For example,Baymamma is in Stage one so might she be getting a different amount of radiation than a stage 4? I thought I remembered Dave's RO saying that she was hitting different areas with different amounts of radiation(of course, those days are a big blur too.LOL).
At any rate, baymamma,I'm so sorry to hear that you and your husband are dealing with two medical conditions at once. But thrilled to hear you are having an easier time. I certainly don't think the no pain no gain rule applies here. It is great to hear about someone having an easier time of it.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Don't feel guilty about not having side effects!! Everyone is different. I had relatively few side effects -- continued to work throughout the course of radiation and chemo, and never had a PEG tube. Best wishes for the rest of your treatment!! Jeff SCC Right BOT Dx 3/28/2007 T2N2a M0G1,Stage IVa Bilateral Neck Dissection 4/11/2007 39 x IMRT, 8 x Cisplatin Ended 7/11/07 Complete response to treatment so far!!
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Julia:
How coincidental. My real name is Julia, but am called Julie and Julieann. I live in New Market, AL, just 10 mins from Huntsville, where I previously lived for over 40 years.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2008 Posts: 507 | Radiation techniques can vary and guidelines can be found in the NCCN Clinical Practice Guidelines for H&N cancer. A copy of the 2009 guidelines can be found on the OCF site at http://www.oralcancerfoundation.org/treatment/pdf/head-and-neck.pdfAn updated 2010 copy can be found on the NCCN site (google NCCN Guidelines). Conventional fractionation for concurrent chemo-radiation is 70gy to the primary tumor/tumor-bed and involved nodes in 2.0gy daily fractions and 44-64gy to the uninvolved nodes that may be known drainage nodes for the primary, or are located nearby (and/or suspect occult area) in 1.6-2.0gy daily fractions. OCF will have the new 2010 guidelines up on thee links by Monday. We just received the 2010 changes from NCCN who we have a formal agreement with. BH
Last edited by Brian Hill; 04-29-2010 02:21 PM. Reason: Updated Guidelines
Don TXN2bM0 Stage IVa SCC-Occult Primary FNA 6/6/08-SCC in node<2cm PET/CT 6/19/08-SCC in 2nd node<1cm HiRes CT 6/21/08 Exploratory,Tonsillectomy(benign),Right SND 6/23/08 PEG 7/3/08-11/6/08 35 TomoTherapy 7/16/08-9/04/08 No Chemo Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | Joined: Apr 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Thanks Susan, I asked my RO about the amount of RT that I was receiving b/c I was concerned that it was enough "juice". I am having IMRT for 39 treatments, the last 14 are a boost to my voice box only. He dropped off my lymph nodes after 25 treatments. I have been able to eat basically anything I want the whole time and doc thinks that is one of the reasons I am handling the treatments so well. I do have a very high pain thresh hold . I have actually gained 5 lbs. Every week I think this is the week I will hit the floor and now I am running out of weeks. This is a good thing !
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
| | | | 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 | Most get the max radiation which is appx 70 Gys and that is spread over usually 7 weeks, 5 days a week or 35 treatments. So 70 divided by 35 = 2 Gys per day avg. Some RO's accelerate the radiation by doubling up on one day of the week, usually Friday, and by doing so they hope the extra radiation (boost) will have more of an impact and therefore they shorten the weeks by one.
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 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Thanks David for the info. I did ask today what my gy was and you were right, it is 70gy. I only have 7 more treatments for a total of 39 which puts me close to 8 weeks total treatment time. Then I get to wait for the PET scan at 2 months. I guess these rechecks will be scary but I might as well get used to them early on. I am assuming the IMRT is one reason I have not had such horrible side effects. I look forward to saying mine treatment was YEARS ago !
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
| | | | Joined: Apr 2010 Posts: 17 Member | OP Member Joined: Apr 2010 Posts: 17 | Oh my goodness ! My brother calls me Julie as did my mother. I am a 3rd generation Huntsvillian that relocated to the Gulf Coast when my husband retired. Used to come to New Market and get watercress years ago. I still have lots of family and friends in Huntsville. My maiden name was Love, went to HHS and my family had the old Twickenham Hotel downtown before it was torn down for the parking garage. My 40 year class reunion is coming up this summer. It is a small world sometimes, huh !
58 yrs Female Vocal cord cancer T1NOMO DX 3/05/10 Started TX 3/18/10 with IMRT 39 total treatments Smoker- quit at DX No PEG
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