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#101155 08-09-2009 11:59 AM
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TL4885 Offline OP
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DX SCC OF LOWER GUMS 6/09, Wisdom teeth and tumors removed 7/09, refuses rx and chemo, started methotrexact therapy 08/01/09.

My 35 year old boyfriend informed me 7/31 that he has SCC. At that time the tumors had already been removed (I thought it was wisdom teeth only). He has not informed any other family or friends of his diagnosis. He thinks he can fight this alone (with my support) until he has a remission report without anyone else ever realizing he is sick ( after a week of mtx I know better). Methotrexate dose is at 25 mg daily right now- is to increase to 100 mg daily by the end of 10 weeks. He has alot of nausea and stomach pain,, but continues to work. What can I expect and what are the odds of this treatment working without RX?


CG SCC of lower gum. DX 6/09, SURGERY 7/09, MTX Started 8/09. Single RX treatment 8/18/09
TL4885 #101159 08-09-2009 04:10 PM
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Welcome to OCF, and sorry to have to be here. I dont know of anyone who was treated with only methotrexact but am sure someone who has will respond. Most of us here had both chemo and Rad as part of our treatment. What did the Doctors recommend for him? Is he being treated at a CCC and do you know what caused his SCC? God speed and good luck. 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 !!!
Bob Whyte #101188 08-10-2009 06:28 AM
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TL,

Without knowing more and at least his Staging usually surgery alone is never enough. SCC is a very aggressive cancer and it claims appx 50% of it's victims and that's usually after the standard very aggressive Tx including surgery, radiation and chemo. Again sometimes only surgery is performed in Stage I's and they will sometimes hold back on the radiation if it recurres but it sounds like they have already recommended the radiation and chemo so IF THEY HAVE he really needs to go thru with it.


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.
davidcpa #101196 08-10-2009 09:01 AM
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TL

I don't usually have to do this, since usually OCF forums are scrubbed clean of scumbags pushing fake cures and bogus Mexican clinics, but I see we have been reinfected again so PLEASE do not fall for any miracle cures. Just because someone violates the rules and links directly to El Loco clinic does not mean that OCF has validated it or supports it. I was beseiged with well meaning offers of herbs, vitamins, and mexican clinic touts at first and it is tempting to believe that they can help - BUT THEY CAN'T. You are very vulnerable right now and I would hate to see you taken advantage of by a rogue OCF post.
As a practical matter, consider going with your boyfriend to his next doctor's appointment if he lets you as you will be helping him a lot by taking notes and remembering to ask the questions. Plus one of the most valuable things a female caregiver does is help spell out complications when the tough male patient replies; Everything's fine to the doctor when you know very well there is nausea, etc,
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
Charm2017 #101204 08-10-2009 03:01 PM
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TL
Welcome to OCF. Im so sorry you are here, but at the same time you will need this site to help you both thru this. Your boyfriend sure has placed a huge burden on you with his secrecy. You will need help caring for him even just a break to catch your breath. Treatments are difficult, he may lose his voice like most of us towards the end of treatment. People will notice he is ill, this isnt like a cold or flu, its a long rough road that is easily recognized by people who know him.

I am one of the very few who did not have a real caregiver. I also ended up in the hospital more times than I want to remember due to no one helping me with meds, hydration, counting calories, etc. I lost 65 pounds and my ability to drive.

I hope he overcomes his pride and lets people know so you both will have some support and assistance. Best of luck with everything.


Christine
SCC 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 smile
ChristineB #101233 08-10-2009 09:57 PM
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TL...I was moved by your post for YOUR sake. I know that, as a cancer patient, I made a conscious decision that I could NOT carry this alone, and I told everyone I knew about my situation and asked them to pray for me. They did, and they still do. It continues to warm my heart and lift my spirits to hear someone ask me, 3 1/2 years later, how I'm doing, and really mean it.
I know that I am overstepping to offer an opinion, since of course I don't know either you or your boyfriend, but that's all any of us can do--offer our opinions to be taken or not.
I feel that he is using poor judgment for himself, AND that he is not being fair to you. He is asking you to participate in something that is not in the best interest of either of you. If I were you, I would tell him that YOU need the support of family and friends, and that to get it, he'll have to let you share the information with them. He doesn't need to shout it from the rooftops, but he's not being either reasonable or fair to you.

Good Luck! XO


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
August #101246 08-11-2009 04:38 AM
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I like Christine was my own caregiver because I was abondoned by my one close person in my town. I did everything myself, with a lot of imjuries from such a weak body. Tell you boyfriend that I was as tough as he will ever be but to have that caregiver very close by. He will need you or someone else if you have to go somewhere. I was never so helpless at anytime in my life, Yes I survived, buw maybe I was just lucky after the falls I took and the injuries from stumbling into the walls or the dropping of things to the floor. Even th fighting sleep when driving on the interstate. He needs help and it won't get any better for a long time. LOL I even had to crawl out of the bathtib but from then on, no more sitting in a tub of hot water.


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
August #101589 08-15-2009 02:00 PM
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TL4885 Offline OP
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Colleen, I noticed that you did not have rads or chemo. What form of treatment did you have? I do so wish that he would open up to our support network of family and friends, but so far that is not an option. He has lost 37lbs thus far, so people are beginning to notice. The methotrexate doubles to 50mg daily on Tuesday- so we'll see what happens from there. Thanks for your support. This forum is soooo important to me right now. Teresa


CG SCC of lower gum. DX 6/09, SURGERY 7/09, MTX Started 8/09. Single RX treatment 8/18/09
TL4885 #101603 08-15-2009 08:05 PM
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TL - Take care of yourself so you can take care of him....grab whatever time you can to relax, take a walk, read a book, pray,whatever makes you feel better. You will need it. You will also need whatever support you can get. I hope he opens up to family and friends soon. ((((TL)))) This forum is always here when you need someone. Good luck.

Cheryl


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #101622 08-16-2009 06:53 AM
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TL, what is the treatment that he is receiving? I have never heard that. I'm assuming it is not a type of chemo since you said he doesn't want chemo or radiation. I don't think anyone wants it, but we want to live and so we give it all we got. Have you talked to him about his choice? I do agree with Colleen. First of all, if he lost so much weight people are going to know something is wrong. He needs support from you and you need support too. I hope we can help you here at least, but you need family too.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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