| Joined: Oct 2009 Posts: 10 Member | OP Member Joined: Oct 2009 Posts: 10 | Hi folks!
This is my second thread here and a lot has happened since the last one. My mother underwent neck-dissection and maxillectomy following a lump in the neck that was diagnosed as adenocarcinoma, and has been on the slow road of recovery for the last month.
She is undergoing radiation therapy in the neck and lower facial area, using 30x2 doses (Grays?) of Cobalt using a Theratron-780 machine. After just three days, my mother is finding her mouth drier, and feels as if her neck is constricted causing greater swallowing problems than ever. A little bit of searching (something I was stupid enough to have not done earlier, trusting the doctor blindly) reveals that the damage to salivary glands is much lower when IMRT is used. Infact, IMRT was was prescribed by a different radiation oncologist I'd consulted.
Now we are considering the possibility of switching to IMRT. The choice is complicated by the fact that in hospitals where we've enquired thus far, it would take as long as 20 days to begin IMRT.
Could someone advise us on the consequences of changing the mode of treatment at this stage? Is the long gap acceptable? Also, would the dosage have to be changed? I don't feel like trusting the present doctor any more, for I think that the old method should probably not have been used at all.
Thanks,
Ankur. | | | | 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 | Ankur,
Gary is our resident radiation expert so maybe he will dig himself out from under the snow and respond.
I personally would switch to IMRT but that is based solely on really the lack of information or so little detailed information contained in your post. I also wouldn't be concerned about a 20 layoff but I would make the decision as soon as you can. What have the IMRT doctors told you. What have the current ones said about possibly switching?
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: Oct 2009 Posts: 10 Member | OP Member Joined: Oct 2009 Posts: 10 | Thanks for the reply David. I am sorry if the information I provided was inadequate--I thought the post should not get too long. Is there something specific you would find useful? A little bit more about the case is in my previous thread.When we raised the question of why IMRT is not being used even when it's available, the doctors started to get defensive. Their explanations varied from "IMRT is used for higher doses" to "Since there isn't a well-defined tumour to irradiate, there is not much advantage to be had from IMRT". They also claim that my father (who accompanies my mother) was well-informed about both methods and given a choice. Our hospital is rather crowded, and their IMRT equipment is burdened so that there is a long time one has to wait. I suspect they trick people into ignoring the IMRT option by not emphasizing the advantages. As of now, they say we would have to wait long if we want to use IMRT there, and that allowing a gap is dangerous because the cancer-cells that have now tasted radiation may recover or mutate. Worse, other hospitals with IMRT also speak of long waiting periods before it can be administered. If someone (Gary?) could shed more light on the dangers of leaving a gap between doses, it would be really helpful. Until then I'm trying to find the hospital which promises to start IMRT in the shortest time. Thanks!
Last edited by ankurtg; 12-10-2009 08:41 AM.
| | | | 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 |
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: Oct 2009 Posts: 10 Member | OP Member Joined: Oct 2009 Posts: 10 | After searching well the quickest anyone promises me is 6 days. They all need at least that much preparatory time. Now if I switch, the question that remains is whether we should continue the current radiotherapy during this waiting time or leave a gap. Advice, anyone? | | | | 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 | If it was me I would ask my new IMRT docs and see what they advise. I think I would continue at least until my new docs advised otherwise.
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: Oct 2009 Posts: 10 Member | OP Member Joined: Oct 2009 Posts: 10 | It's getting hopeless. Docs say that enough damage will be done to the salivary glands during the first 10 days of radiation, and IMRT won't save them afterwards. From how my mother's eating that seems true. Meanwhile, no one has anything encouraging to say about a gambit with gaps. I'm wondering if the other benefits of IMRT are strong enough to warrant a switch.
I feel like yelling at the doctors for not choosing IMRT to begin with, only that's not going to help. Thanks again, David.
Last edited by ankurtg; 12-11-2009 08:25 AM.
| | | | Joined: Jan 2008 Posts: 26 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2008 Posts: 26 | My treatment also included radiation (with boost the last several treatments) on the lower half of my face and upper half of my neck, instead of IMRT. Best he could tell, the surgeon got all of the tumor and the one small area outside the tumor in the floor of mouth. Therefore, IMRT, as a targeted therapy, had nothing to target - like you describe of your mother's situation. Because I have never smoked, seldom drink alcohol and was HPV-, the team felt I needed aggressive treatment which the widespread radiation provided against a potentially and statistically aggressive cancer. It's a very personal decision - I chose to follow the team's advice and hit it with the big guns. Also, regarding a gap in treatment - ask the radiologist to show you the bell curve for radiation effectiveness. It's a steady climb up to a certain point where it increases only minimally per additional treatment. My radiologist showed me this to reassure me it was okay when I had to miss 5 days (due to Thanksgiving closing the center and side affect making me sick). At the time of my gap in treatment, I had reached the point where I was past the steep climb and felt reassured it was okay to have the gap after seeing the bell curve. Treatment is very tough as you are seeing, but there is healing aftewards. Everyone heals differently, but I would expect her to improve to a new normal following treatment. Best wishes to your Mom as she continues her treatment.
08/24/07 Dx at age 44 never smoker, occasional drink T1N0M0 G2 09/06/07 partial glossectomy(rt),neck disection (rt) 32 nodes clear 12/05/07 35 RTx w/boost, 63 GY, finished 12/28/09 PET/CT all clear!! 12/19/11 check-up, all clear - 4 years cancer-free now !!
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I had a break for about a week after a having just a few IMRT treatments before they changed the radiation field. Also I think that you need a significant radiation dose before you actually fry your glands and I seriously doubt that this happens within just a few days. Also, IMRT is quite good to treat a more diffuse (larger) target and it still allows you to spare certain regions (if you choose to). Having said this, I echo Davids sentiment. I would listen to the IMRT guys.
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: Oct 2009 Posts: 10 Member | OP Member Joined: Oct 2009 Posts: 10 | Thank you KimK and Markus, and sorry to be so late. We consulted a different radiation oncologist for IMRT, and after studying the case his response was similar to what KimK said. It being post-surgical radiotherapy, he said he couldn't be sure as to what specific areas to irradiate, and that it was safer to go ahead with the current mode (Theratron-780). That's what we've been doing, and trying our best to deal with all the problems that arise.
Thanks again, Merry Christmas and good health to all! | | |
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