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#123046 10-13-2010 08:46 AM
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roma Offline OP
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Hi I am so happy to see this forum that has so much to offer.
Let me introduce myself. we found out about my husbands cancer just a month back after having repeat biopsies. He is told to have 35sessions of radiations x 7weeks with 3 chemos every week. Cancer is on roof of the mouth, left side of the tongue, right side of the gums upper/ lower, lymp node. I am sick worried to my stomach. Are there any special things I need to keep in mind or do. What are the survival chances? Is it really hard on apetite. Please advice. Thanks to all.


Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV-
Radiation 70 gy & chemo start Nov 1 End Dec 17/2010.
1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
roma #123047 10-13-2010 09:02 AM
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Hi Roma, Glad that you found this site. There is alot of information on this site, I think you will find it very helpful. I cannot answer your questions, I had surgery to remove my cancer. But many here have had radiation and chemo and I am sure will answer your questions very soon.


Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear

wendys #123048 10-13-2010 09:11 AM
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roma Offline OP
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Thanks Wendy. I am researching the forum to get as much information as I can. It is nice to be able to relate to others that have been there and done that.


Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV-
Radiation 70 gy & chemo start Nov 1 End Dec 17/2010.
1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
roma #123049 10-13-2010 09:38 AM
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Roma, welcome. Sorry to hear about your husband but glad you found this site.

As a word of general advice: encourage your husband to eat and eat and eat right now. He's going to lose weight during treatment and there will be times when he simply won't want to eat anything. I'm sure his doctors have said the same thing but it bears repeating.

As others will no doubt tell you too, focusing on the "survival chances" is something better avoided. Sure, we all have those thoughts, it's only natural. But wondering about statistics is ultimately, to my mind at least, a losing proposition. We're all different and we all react to treatment differently. It's easy to say "think positively"... but it really, really does help.

Ask any specific questions here at any time. There's bound to be someone who knows the answer!

Courage to you both.
David 2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #123055 10-13-2010 10:32 AM
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roma Offline OP
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Thank you David for replying back. Greatly appreciate words of optimism. It keeps the spirits high.Yes you are right Positive Thinking keeps one going.
I will focus on getting him to eat a lot. He in general does not eat that much. But I try to get him to eat.
I saw in your signature HPV pos. Is HPV for good or bad. My husband has been told HPV is the main cause.


Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV-
Radiation 70 gy & chemo start Nov 1 End Dec 17/2010.
1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
roma #123066 10-13-2010 02:44 PM
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Roma,

I doubt seriously that his slides would test positive for HPV as it usually infects the Oropharynx region which includes the Base of Tongue (BOT) and tonsils.

I am a tad surprised that they are not going with some surgery first only because so many others with a similar diagnosis had it first.

I also think you may be mistaken on the 3 chemos a week. Most either get 3 chemos during the entire Tx or one chemo a week.


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 #123080 10-13-2010 09:51 PM
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Welcome Roma!! You have found the right place. This forum is full of tons of info and the most supportive friends around. Sorry your here but glad you found us.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
Susan3175 #123086 10-14-2010 06:55 AM
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I had 3 surgeries before any other treatment. My teeth had to go, for rads and chemo. The I had the rads and chemo for 4 weeks but only 4 Erbitux chemo and radiation everyday. As soon as that was finished, I had to have rad seed implnats put into my tongue going into it theu my chin and then Quaranteed for supposedly 3 days which turned into 7 days. Your hubby needs you there for him at all treatments, I had noone but a stubbornness to win the war. Like david said, Eat , eat and then eat more. I lost 80 lbs up to this point. Now I have to have my bottom jaw removed and a new one made if they can. It's a tough road to walk, but takin it one step at a time this road can be walked. Good luck . This sometimes changes ones personality too, so don't be surprised at some things he might do or say differently.


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
EzJim #123088 10-14-2010 07:52 AM
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Welcome to OCF Roma. Im sorry you have to go thru this with your husband. I also had my first round of OC in 2 seperate places in my mouth. Most people here have it in one place. It can be cured. Please dont make yourself crazy over statistics. Every single person here is different and will respond differently to treatments and medications.

Wishing you all the best with your husbands treatments.


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 #123104 10-14-2010 04:55 PM
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roma Offline OP
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David : May be I am a bit mistaken regarding the chemo. I have to see the doctor in a day perhaps i will get to know better i will write down questions to ask dr.

Susan : thank you for your support and welcome message.

EzJim : Thank you for your comments. It feels nice to hear positive thoughts.It keeps spirits high.

Christine : Thankyou for support and advice.

I am so happy to to have gathered so much information from you guys. Thanks a ton .


Caregiver to husband 40 yrs. Was diagnosed SCC 09/2010. Soft palate, lft of tounge. Stage 4 HPV-
Radiation 70 gy & chemo start Nov 1 End Dec 17/2010.
1MRI-7 Mar 2011. Neck dissection-14 apr 2011. Lymph nodes removed 36 just 1 had cancer. F/U CT Scan-19 may 2011. "Cancer Free" as per doctors!
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