| Joined: Aug 2013 Posts: 3 Member | OP Member Joined: Aug 2013 Posts: 3 | I am crazy worried. As worried as when my "always healthy" husband got DX in March of SCC Stage 4 BOT.
He made it thru chemo tho had every side effect possible and very harshly....made it thru 31 of 35 scheduled RAD treatments but the last 3 (last week) did him in......was in ER/Hospital 3X - he has quit treatment and nothing I say or the doctors say will budge him. He is dealing with such bad side effects I don't think he is making good decisions...but, it is HIS "call to make". Just panic....anybody been here?
LMC My spouse of 35 years DX SCC Stage 4 BOT in March Finished Chemo Every side effect possible + harsh Ditto with RAD Hospital/ER with last RAD treatments- quit at 31 of 35 | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Sorry to hear your husband is having such a hard time with treatment. While the treatments were brutal, I never reached the point of wanting to stop. I just kept counting down the days.
Jeez... 4 more to go... just 4 more! Maybe a day or two off will help and he can finish. Treatment is traumatic and you're right, he's probably not thinking clearly or rationally at this point. Perhaps 31 out of 35 rad treatments will be enough. He did finish his chemo treatments so that's a positive.
Good luck... positive thoughts and prayers
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sort of, but not by choice. I only did the chemo part in 2009" and only 1 week out of three induction chemo, when I became deathly sick, in ICU for almost 2 months, before doing chemoradiation was to follow, and was hospitalized for 6 months, paralyzed and blinded. and could not complete any further treatment for over a year until 2011 since I was that ill. Because of it, it probably resulted in all my recurrences. Chemo does not cure this cancer, and will return, if that's all was done, in case anyone thinks likewise. I'm not saying his decision is good, but at least the majority of rads was completed, but for every day missed, is equivalent to 1.7 percent reduction in survival, and increase risk of cancer regenerating, which it does overtime, and radiation gets less effective after 5 weeks or 25 sessions, cancer regenerate quickly from the radiation itself , and that's why it is set up that way in the treatment plan in a specified time, and dosage is reflected to keep with this.
Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | LMC, He did pretty well: 31 of 35 is good, not 1005 but pretty darn close. If there is absolutely nothing more to convince him to finish then at least for peace of mind you should know he got the majority of the curative effect of the radiation. A few grays here or there will make some difference maybe but overall he got a lot of benefit of the treatment he received.
best to you, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | The over whelming majority of us (men and women) that had concurrent chemo/rad suffered greatly for a short period of time (appx 7 weeks) but our life was at stake. Don't want to sound mean but he needs to put his adult pants on and if it's not too late finish the damn Tx because his life may very well lie in the balance.
Even with the full Tx many people die a horrible death with this cancer so why in the world would anyone want to do less and give the advantage back to this cancer?
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | One question that comes to mind is his medications. When I went through (before IMRT) the radiation was brutal, and I was beyond miserable. Of course I was taking morphine and other opiates like it was water and that not only helped me manage the extreme pain I was in but the high doses of it actually knocked me out so I slept 18 hours a day almost at the end of things. It sounds like his docs could manage his pain and discomfort better allowing him to finish. If he thinks he is uncomfortable now, I think most here would agree that the month AFTER treatment was absolutely the worst.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Aug 2013 Posts: 3 Member | OP Member Joined: Aug 2013 Posts: 3 | Thanks all for your comments. He has had pain issues for a while & every single med they try for that has made him sicker - that has been part of the problem and has resulted in the 3 hospital stays. The doctors in ER last time (after 9 hours of trying to stop nausea and pain sort of threw up their hands and said there is nothing else we can do for you) and discharged him. Until that LOW moment, I had had nothing but good experiences with them (including our previous 2 visits). Even the nurses were overheard saying they "avoided" his room because it is so heartbreaking and they can do nothing. I get what you are saying David but if I had been thru what he has with every single severe side effect, I would have put MYSELF out of misery so I hesitate to push more than I have- and I have pushed. He is so weak & skeletal from it all (though he eats faithfully thru the peg) that I just think his mind and body have gone the distance they can go. Sounds whimpy but......he was so weak and, as always, constantly vomiting ....the last ambulance pick up didn't even try to put in an IV. Still he did it all faithfully and on command until that last TX31.....something snapped.
LMC My spouse of 35 years DX SCC Stage 4 BOT in March Finished Chemo Every side effect possible + harsh Ditto with RAD Hospital/ER with last RAD treatments- quit at 31 of 35 | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 92 | This does not sound whimpy at all! No-one can know what he is going through except him and if he has had enough and can not go any further then that is it. All of our side effects are different and different in severity and none of us can know exactly what someone else is going through. I think we all just want to make sure he does all he can to get rid of this awful disease, and it sounds like he has done all he can. I think we hoped that maybe with an extra push he could finish but not everyone can finish, and maybe not everyone needs to finish, C is so individualized and tricky there is no way to know for sure exactly how much or what is needed. Hopefully what he has done and been through is enough. I finished mine but that doesn't guarantee I will not have a re occurrence. All we can do is keep our fingers and toes crossed.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers 3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13 rad end 5-29-13
| | | | Joined: Aug 2013 Posts: 3 Member | OP Member Joined: Aug 2013 Posts: 3 | OH Rosy, THANKS SO MUCH. It is what I tell myself for comfort....the doctors themselves when asked, can't or didn't, give a good answer for WHY exactly 35 (and they ARE good doc's) don't get me wrong. It is not an exact science they say.
So, I too pray what he did was enough. But it is all he can handle.
How is your recovery? I have to return to work and am scared to leave him but know he will get through. Do you have good support? You are so young. Bob is 67 but prior to this 67 going on 16!!!
LMC My spouse of 35 years DX SCC Stage 4 BOT in March Finished Chemo Every side effect possible + harsh Ditto with RAD Hospital/ER with last RAD treatments- quit at 31 of 35 | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, LMC
the fact that he got the first 31 TX in good order is excellent. The treatment schedule and number of GY's ('grays' - the amount of radiation given) is somewhat of an art as well as a science. The idea it to kill the cancer but not the patient; and its a balancing act sometimes. Best wishes on Bob's recovery and on your return to peace of mind.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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