| Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Just wondering how many of you had radiation with chemo. I saw my Chemo dr last week and she said she was going to talk to the radiation dr and discuss whether I will get chemo as well. Being that I'm still tryign to recover from my surgery, I didn't bother askign any questions because I was just tired and wanted to go home, it had been a long day of seeing drs. I see her again but wanted to hear from you all what you thought about getting rad with or w/o chemo. Thanks!
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 | See my signature line and important to note I had mets to at least 2 nodes and no surgery.
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | Every treatment plan is individualized, and this would be particularly true in your case, given that you have Mucoepidermoid, rather than SCC.
For SCC, the combination of chemo and radiation is pretty much the standard of care right now, absent comorbid conditions that would indicate against chemo. In most cases (again for SCC), the chemo serves to increase the effectiveness of the radiation and assist in cleaning up any stray cancer cells that may be wandering around the body.
Always an individual decision, but I wanted to throw everything they had at this disease. Based upon what I have read, the treatment regimens for SCC and mucoepidermoid are similar.
If you do some searches here, you should find some folks with your diagnosis who can provide further insight. As always, you need to listen closely to your team of doctors, ask questions, and make the best decision for you.
Best wishes.
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I had only radiation but that was back in 1997. You're at MDA aren't you? I'd go with their recommendation.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I had both at the same time after being told I needed neither Esikon, I had to have radiation seed inplants after the rads and chemo, and teeth removed before all of that. One never knows.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Eileen,, we had our beginnings both in Aug 2007 mine was the 3rd. Or did I read your profile wrong?
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: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | No Jim, I had my radiation in 1997 not 2007. I'm ten years ahead of you. Brian and I both had our treatments about 4 months part. We are old time surviors.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Thanks everyone for your input. I am at MDA, I will go with what they recommend, I just wanted to see what yalls opinions were on the subject matter. I was told either cisplatin or carboplatin if they decide to do chemo. I'm fine with it, I just want to knock it all out so it never returns!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | If you have a choice, Carboplatin is purportedly less toxic than cisplatin on your normal cells. I had no ringing in my ears or other symptoms with the carboplatin which was so much easier on me than the Erbitux. 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: Mar 2009 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 109 | I had conflicting advice from my team of docs (H&N surgeon said no chemo, rad onco said whatever, med onco said chemo), a bunch of 2nd opinions from oncologists and H&N surgeons were 4:3 against chemo, and that included docs at my own hospital, Sloan Kettering, Moffitt, and Dana Farber (sometimes it's confusing to have friends who are doctors! ), and there was neither trend nor consensus. So I went with chemo just so that I wouldn't look back wishing I had done more.
Last edited by Jenka; 07-24-2009 01:56 AM.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | Joined: May 2009 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 113 | Well I will give my 2 cents in this conversation since I went back and forth with the same exact scenario. I got 5 opinions and only 1 said that he recommends chemo SINCE I had the surgery and it successfully removed the tumor which was only 1.7 but showed some extra capsular spread...however the 1 doctor that recommended it was Dr. Trotti at Moffitt. He did say that he tends to be a little more "scentific" and that nobody was going to hold me down and make me do it like they were the radiation. Sooooo long story short I held off on the chemo and am doing the highest dosage of radiation. One of my major factors in this decision was when I was at Moffitt, the guy accross the hall REALLY needed to have the chemo and he couldnt handle it now because he had chemo 7 years prior and it trashed his kidneys and liver. I am sure chemo has come a long way since then but that is what I felt comfortable with doing at this point. If it shows back up maybe I say to myself "damn I should have done the chemo" or on the other hand do the chemo and wonder down the road if I have major complications with my organs "damn I knew I shouldnt have done the chemo" thats just my theory and like they say EVERYBODY IS DIFFERENT!! Also my age came into play which I am sure it will in your case as well. Good luck and like soooo many people told me you have to be comfortable with your decision to get thru it! I so far think I am doing fairly well seeing as how I played a 4 hr round of golf yesterday and I am about to end my 3rd week!
Just for note DAVIDCPA is the man!!!! See David I show you love! lol
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: May 2009 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 113 | Oh yea by the way David I will be making a nice donation to the OCF with my new found money thanks to you!
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: Mar 2009 Posts: 109 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 109 | My kidneys and liver did well, thankfully, but my last chemo session was dropped. My medical oncologist, the one who recommended chemo in the first place, said that I was beaten up enough by treatments and could skip the last chemo. My blood work was fine throughout, but I was just so exhausted and in so much pain that I didn't even put up a fight.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | ESikon, are you on Facebook?
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 | I had induction chemo with cisplatin, doxtaxel and 5FU for 9 weeks and then 7 weeks of Rad with weekley carboplatin and so far am 18 months free of this enemey. My advice is take the toughest treatment option given to kill this enemey and then you will never as "what if" if the beast should return!! Good luck and God speed. 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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | thanks! I will explore the two chemos, I was thinking carbo too but then it has a higher radiation recall.
Like everyone is saying, I don't want the possibility of it coming back so I will do whatever they recommend.
yes, I am on facebook.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | There is nothing much new going on with chemo these days. Radiation and chemo are synergistic. This means that in addition to the systemic effect chemo also makes the cancer cells in the radiation field easier to kill. I have no issues with any organ damage from the chemo to my knowledge. One thing I would recommend if you elect to get chemo. See if you can get the weekly treatment, they make more sense and are better tolerated. I had cisplatin and since I had problems with this we switched to carboplatin. This is another advantage of the smaller weekly dose, you actually have time to change if something is not right for you.
M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | 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 | Just to add on to Markus' post, I talked to my RO, Dr Trotti at Moffitt about the "benefits" of smaller weekly doses over the kinda of standard 3 big bags of Cisplatin and he said the Moffitt still believes that the 3 larger doses are superior in overall results and they have no intention of switching at this time.
I know that we have had some patients post here that got the weekly doses and they definitely seemed to have an easier go than those of us that didn't and I myself often told newbies to inquire about them so when I got a chance to ask my expert I was a little surprised how quickly he shot it down so I'm just providing another point of view.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I came across this in a quick search: http://www.springerlink.com/content/945k613h4v912167/if anyone has come across a direct comparison 3 vs 7 doses please pipe up. A consideration when comparing 3 times vs weekly is this. How many patients are able to get all 3 doses.... so 3 vs 7 is one thing and 2 vs 7 is another. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | 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 | Conclusions: Comparison between two treatment modalities appears to result in statistically similar response rates and adverse event profile.
Markus, what does the phrase "similar....adverse event profile" mean?
Does that mean that both "the weekly" and "the every 3 week" methods were just as bad for the patients in this group?
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: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2004 Posts: 598 | I question the essential validity of the study, due to the fact that a different patient population (older, poorer performance status) was used for the weekly dose, and younger, better performing patients were used for the 21 day regimen. A more valid study would have been to use similar patient populations in each treatment modality, then compare.
My CCC uses the weekly regimen as its primary therapeutic methodology, and has had good results.
I am also curious about the low (50% and 40%) Complete Response Rates. That is significantly below what is acheived at most CCC's these days, based upon my reading. Would be interesting to see what the TMN and location characteristics for the test population.
Also tough to draw too many broad conclusions, since test population was small. 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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I concur, but this is all that I came across. A study with a more comparable population (eating, drinking, smoking, health care etc) would be better. What is needed is an "identical" set of patients for the 3 vs 7 treatments. .... It would seem reasonable that the younger group can tolerate a harsher treatment better than the older group. If the outcome and adverse effects are similar then this favors the weekly regimen (in my mind). Perhaps we are splitting hairs here. The important thing may just be that one HAS concurrent chemo with IMRT. I will see my MO (young guy) this Saturday and will query him regarding and his take on this. This one deals with recurrent HNC http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2621229They strongly advocate radiation +/- chemo to reduce rHNC. M
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | 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 | Markus said above....They strongly advocate radiation +/- chemo to reduce rHNC.
That's an understatement... as they recommend postoperative radiation and chemo if the expected recurrence rate is only 10%, pretty much regardless of initial tumor size or other Staging factors so unless I'm missing something, that's pretty much saying almost everyone with HN cancer should get concurrent rad/chemo.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | ah, but David this is what they said:
Conclusions: Gabriela Studer,1 Klaus W Graetz,2 and Christoph Glanzmann, Radiat Oncol. 2008; 3: 43.
re rHNC "A low salvage rate of only ~50% at 2 years was found. Calculated numbers of patients needed to treat with postoperative radiation after initial surgery, in order to avoid recurrence and tumor-specific death, suggest a rather generous use of adjuvant irradiation, usually with simultaneous chemotherapy."
.... while the results are pretty convincing, it will take more (and independent) confirmation (also in the US).
M
quite often you find a cautious tone (i.e. suggest) in a scientific article. Unfortunately, the cranks do not stay away from absolutes.
Last edited by Markus; 07-27-2009 10:05 PM.
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Thanks Marcus and David, didn't even think about the chemo schedule, but for some reason I want to say it would be weekly. I would love to hear what your MO says Marcus.
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: Apr 2009 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2009 Posts: 104 | John just completed radiation, after surgery to remove the primary tumor (right tonsillar region though he had a tonsillectomy as a kid) and the three cancerous lymph nodes (plus a number of others that were matted together but turned out to be noncancerous). The ENT and RO decided on surgery followed by radiation vs radiation and chemo, so now we'll see; he finished up the treatments on the 14th... best of wishes for your situation
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
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