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#134625 05-26-2011 06:59 PM
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Hi I am a new member as well. I am 21 years old. I was diagnosed with squamous cell carcinoma of the tongue on the right side of my tongue. I was diagnosed in April of last year. I had first partial glossectomy to remove the tumor, then I started seven weeks of radiation and was enrolled in Cetuximab clinical trials. Unfortunately, it came back, so I stopped Cetuximab and started regular chemo, Taxol I think. Lost some of my hair, was not able to eat, mouth was dry, taste buds completely messed up. Lost a whole bunch of weight. I was obese, over 300 lbs and went down to 250. I finished radiation and chemo in July. I went in and got nodes implanted in my neck at Mercy General Hospital in Sacramento in August. Went back to work and was able to eat hamburgers and burritos cancer came back so I had a hemiglossectomy and removal of the lymph nodes of the right side of my neck in December of last year. Spent holidays in the hospital. Had trach and PEG tube put in. I left hospital in January, had trach taken out in March. Just had a biopsy of my mouth and another CT scan. My left side of my neck is inflamed from the radiation. I believe that it is coming back unfortunately. I have a PET scan scheduled for tomorrow I just started work last week. I have a speech impediment, can drink smoothies and milkshakes, and on good days experiment with real food. I'm taking liquid Vicodin, ibuprofen pills for the jaw arthritis trazodone and Celexa for depression. Uh yeah,I feel alone and frustrated with my diagnosis. I am not sure what to do anymore. I feel like no one understands what I am going through in my family. Can anyone please just talk to me and give me some advice on how I should go about all of this bull-- that is occurring right now

IsraelB89 #134626 05-26-2011 07:54 PM
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Welcome to OCF Israel. You are no longer alone! You have just joined the largest online oral cancer forum. We will help support you and give you info and guidance.

I hope you are not facing another recurrence! Best to stay busy so that you keep your mind occupied and not dwell on the "what if's". I know how scary it can be thinking you are sick again. Especially after everything you have already gone thru. We have all had our share of scares so understand what you are experiencing.

A signature will help us to get to know you easier. Its under the 'my stuff' tab. Click on profile, scroll to the bottom and type in the box. Dont worry about being technical, write what you feel is important.

Best of luck with tomorrows PET scan! Please come back and let us know your results. Hope we can cheer for your good news!!!



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 #134629 05-26-2011 08:49 PM
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Hey - you've been through the ringer it sounds a lot like the Drs have had a tough time getting out in front of the disease - have you had a neck dissection on both sides? Are you going to a cancer center? ( sorry not familiar with the amercan hospitals) do you know where they radiated you the first time? Why did they do a lymph node implant? These are things you should know in order to push for what should be done - please don't worry until you get the results - you've found a great place for support ! Hugs and blessings to you!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #134707 05-30-2011 03:40 PM
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Well, Israel, since we're practically neighbors I want to welcome you to the best forum with the best people anywhere. I have to travel to Sac frequently to the VA hospital at Mathers AFB. In fact, I go down for a follow up scan on june 29th. Hopefully spring will have arrived by then. :-)


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #134714 05-30-2011 06:15 PM
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Holy cow Israel - you have not had a good year have you? You are so young and you've been through so much. I bet it seems like once you think you're over a hurdle there's another one right in front of you. In some ways that's true - we're always getting ready for the next obstacle with this disease and being able to physically, mentally and emotionally manage it all is really hard.
I too feel like my friends and family don't understand sometimes - they just want me to be better and forget all the bad stuff that happened and pretend that there's no way it'll come back. It's kind of a form of denial if you think about - something they maybe have to do to protect themselves - kind of makes it hard on us though! I found that this site really helps me to chat with people who "get" me - I go to a head & neck cancer support group once a month at the hospital which helps too. You're not alone - but I'm not sure that anyone can really understand what you've been through like someone who's been through it. So welcome to this site - I'm glad you found us and hope that you don't feel as alone as you did before you found us!

P.S. - you have every reason to feel frustrated - this SUCKS! Do you have the results from your PET yet? Finger's crossed for clear results!


Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
Jenslp #134719 05-30-2011 07:16 PM
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Israel - I'm so glad you found this site. It's the best place to be for the very latest and best information on oral cancer, and especially for the compassionate people who have been where you are and really do care what happens to you. THe waiting is so very hard, but while you are waiting on test results, it is better if you can keep busy so that your mind doesn't go to the negative side of things and you can try to think of all the things that can go Right instead! Let us know what's happening with you. We'll be thinking of you and hoping for the very best for you!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Jenslp #134720 05-30-2011 07:20 PM
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It's time to toughen up and fight harder. Think on the positive side and it sure will help. Remember it AIN"T until the biopsy says it is. This is the best place to come and air it out. We all understand and we are on your side. I had a reocurrence with in 2 months and they got some more tongue on the opposite side. I'm here as well as the rest and still fighting. Welcome to our family.


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 #134770 05-31-2011 10:10 PM
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Hi Israel, I'm just a caregiver...and not even a very experienced one. So, I can't give much practical advice about OC. But I can tell you that you have found the most wonderful, giving, supportive group of people you could hope to find either in person or via the internet. You'll get support and information and even tough-love when you need it (although, it's mostly heavy on the 'love' and light on the 'tough'!) If you are looking for people who understand...this is the place.

Please try not to worry until you are given something to worry about. Jim is right, the biopsy says that it is or isn't cancer. Scans tell the doctors where to look but they can't tell a doctor exactly what it is.

Please try to distract yourself. Try to keep occupied with things you enjoy doing. Something that may help you feel better is looking for ways your experiences can help others here on the OCF forum. Whenever I feel down, I like to do some volunteer work or do a little something for someone else. It is kind of selfish of me, but it really does help.

Wishing you peace smile




Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Sandy177 #134773 06-01-2011 05:40 AM
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Said Sandy....Hi Israel, I'm just a caregiver...

GIVE ME A BREAK!!

Were it not for my caregiver I wouldn't want to think how my treatment and me would have turned out.

JM2C's


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 #134782 06-01-2011 01:36 PM
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Just a caretaker? Well, I'm on that side now with Linda having breast cancer and being "just a caretaker" is godawful hard.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #134790 06-01-2011 04:23 PM
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Well, David - you're right, being a caretaker can be godawful hard, but since you've been on both sides of the experience, that makes you that much better as a caretaker. So kudos to you for all you do!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Deejer47 #134794 06-01-2011 04:55 PM
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LOL David, I likes my caregiver too. I had this old man and still do but he makes me do too much. A caretaker is the ideal way to fight this and I would bet Sandy is the perfect person for this job . I admire you sandy and the way you do your job.


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 #134801 06-01-2011 08:10 PM
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Hey Israel, sorry to hear about your story.

I'm also 21 years old. I was officially diagnosed just after my 21st birthday last year.

We're a bit of a rare breed at our age. But try to see that as a positive. Our youth can certainly have it's advantages fighting this disease. We must all be ready for the battle of our lives though. Being in a good place mentally helped me. I tried to embrace the battle and focus on getting through each day. Some days are much tougher than others. But having the determination to get through those tough days, gets you through to the better days. And you have to believe they will come.

Coming here for support is a great start. I wasn't aware of this site until after I finished treatment. I wish I'd discovered it earlier..

If you ever want to chat, I'm on the facebook list in the 'friends' section of this forum. You can msg me on there or on here. You're not alone in this fight.

All the best mate.

dave


21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
Dave1989 #134806 06-01-2011 11:41 PM
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blushUh ohhhhh! I owe a big apology to my wonderful friends here who are, or have been, caregivers! You know I love you!!! Being a caregiver/caretaker certainly is a horrendously difficult and demanding job. I am so sorry for making a statement that marginalizes what you do or have done. I'm so thankful for your guidance and camaraderie.

So, Israel, if you have a caregiver, the OCF Forum is a great place for him or her, as well. It really is a family.

@ Anne-Marie: You're an amazing caregiver and you give so much support to other caregivers...we're very blessed. (And thanks for not raking me over the coals!)

@ Jim: Thank you smile I'm just a pitbull about some stuff and a mama bear about others. If J and I end up going through it, then I really hope I rise to the challenge.

@ David R.: Bless you for knowing both parts far too well and for still having a sense of humor!

@ David CPA: Thank you for acknowledging how important caregivers are to patients. You are so kind to make sure it doesn't go unnoticed.

Love to all!

...and especially for gentleman Jim...a big hug and kiss!


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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