#74284 05-13-2008 06:33 AM | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | i decided to give myself a last chance to fight this terrible disease. i decided to be radiated for a 2nd time along with chemo. i have already been operated 6 times so this is no more an option. my Drs told me that they have to do with a very bad gene that is very hard to defeat. i have started a pre-treatment in order to get raedy for the radiation, but i feel so exhausted with no energy at all. could a Tx instead of giving more time do the contrary by reducing the time left? and instead of living less but better you end up losing your fight earlier and with all the costs that these treatments have? if you were in my shoes what would you do? is it possible to pass away because of severe side effects? i really don't know what to do. please advise!
sophia
| | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Sophia, I don't know what I would do in your shoes. The questions you are asking are questions you should be asking your doctors--they can give you answers better than us. We aren't doctors. It's perfectly reasonable to be asking about the tradeoff between treatment benefits and possible bad side effects at any point in cancer treatment but certianly in your situation where they are recommending reradiation for a recurrence.
Some questions might be whether the treatment will have any chance of permanently making the cancer disappear or just slowing it down? If the answer is just slowing it down, how much benefit does research show there is? How much chance it will even slow it down at all? If it does slow it down, what's the average extra time you get? Are the side effects so severe I could end up dying from them? What will you do to be sure they don't get life-threateningly severe? Those are the questions to take to your doctor. And be clear you want honest answers, even if the answers might be hard to hear.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | I agree with Nelie, please talk with your doctors; also you could separate this is two (three) outcomes.
A) reasonable chance for cure B) slowing down the progression C) just palliative treatment
In either case there can be serious complications from treatment although for C the radiation/chemo dosage would be smaller and have less side effects. That might also be an option which you could take if the treatment turns out to be too much. So the decision could be deferred until later if that is of any use. Perhaps this approach (go for it and decide later if continuation is desirable) is something to discuss with your team?
Markus
Last edited by Markus; 05-13-2008 12:45 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: 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 | Sophia,
You started your post with " i decided to give myself a last chance to fight this terrible disease." so it sounds like that's the way you want to proceed. This is a tough issue that none of us want to be faced with and Nelie and Markus have given you good questions to ask your doctors. Ask them to speak slowly and take notes and ask them to repeat their answers if necessary. Take a friend or a tape recorder. Then listen to them in private. The rest has to be up to you.
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 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hi Sophia- I just want you to know that you are very brave. This is a very daunting position to be in.
I hope that you get some relief from your pain and discomfort somehow.
LOVE Kate
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Sophia,
The only thing I can tell you is to keep Fighting. There is no, last chance that I know of.
As you read my history, you can see I believe in fighting!!
I was once told to do ALL that you possibly can. When that is done then you have the Right to give up!! OR let go.
Is this Hard to do? YES, it is. Most of Us here know that.
When you are dealing with CANCER we know what can happen. It is important to understand that. Do not get me wrong. Having CANCER does NOT mean you will DIE! You will and always have a chance to survive it all.
Please Learn all you can about the Caner you have. That is what gives you the POWER to survive.
Take care and Know that All of us here are thinking of you!!
bye for now... Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Sophia, The doctors seem to be offering you a course of action that will be beneficial. They can not predict the future, they can only offer their skills and knowledge based on experience. You have been given very good advice on how to talk to the doctors. I trust that they will be able to anwser your questions. Please know that you are in my thoughts and prayers. Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Sophia, Philosophically, all of us got palliative treatment since life is a terminal illness and the treatment that we got, extends life. I personally don't think that my lifespan will be the same as it may have been pre-Tx - but I don't dwell in it either. I just take it one day at a time. There is risk in most medical treatments and your decision must be based on what is the risk and/or benefit of the procedures they are proposing. This includes quality of life as well (QOL). There have been some promising studies on ReRT specifically for head and neck, see: http://jjco.oxfordjournals.org/cgi/content/full/34/2/61also: http://www3.interscience.wiley.com/journal/82003276/abstract?CRETRY=1&SRETRY=0And from Japan: http://sciencelinks.jp/j-east/article/200121/000020012101A0745026.phpThere is no mention of the hemorrage issue but their findings about "chemoresistive" were interesting. I have not heard that term used before.
Last edited by Gary; 05-16-2008 04:54 PM.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Dec 2007 Posts: 46 "OCF Down Under" Contributing Member (25+ posts) | "OCF Down Under" Contributing Member (25+ posts) Joined: Dec 2007 Posts: 46 | My husband almost died one week after my rad treatent finished in a motorcycle accident. I had tongue cancer and the free flap etc but i was told because the accident was so soon I now have ptsd. I have started smoking again and I hate myself and want to die as I had stopped for three months. He cant wait to get his bike fixed and get back on the road, yet he is furious at me for smoking and doesnt understand why I am doing it. I NEED TO STOP...frankly I am suicidle and would rather die as the arguements have now become very cruel on his side. He has PTSD as he is a Veteran to throw into the mix. I am supposed to be his carer so I have none. Can someone...anyone....help me...i truly want to leave this world for a better one as I am in Hell already. Please help me...Im usually fairly up and happy but this is taking my soul piece by piece. He even BOUGHT me a pkt yesterday....whats going on? I have no one to talk to (I am booked in with a quit dr but he is still at me every day about how "weak" I am and how strong he is. (we smoked for the same amout of time....he gave up earlier as he is older than me. HELP!!! I cant see any way out.
Edited by LynfromOz (29-06-2008 10:04 AM) __
Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good! 2016... Still cancer free! Yay.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Lynn, PLEASE slow down - Your life is still worth living. You have friends here who can help. Please start your own thread so we can respond. Many of us have battled the cigarettes and there is now more help than ever for quiting. Cigarette smoking is one of the strongest addictions and you are to be admired for having quit. If you did that once, you can do it again. It is not a matter of strengh or weakness but a determination to get the help needed and stick with it. Perhaps the harshness is your husband's frustration that you have started and he doesn't know how to help you.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
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