#23632 07-02-2007 03:56 PM | Joined: Jul 2007 Posts: 2 Member | OP  Member
Joined: Jul 2007 Posts: 2 | Hello, I wanted to say hello and introduce myself. I am a 31 year old cancer survivor. I am very new to this and thought I would try to speak to others that are going thru this emotional experience.I am not sure where to start. I was diagnosed with stage 3 cancer in December of 2005. I had 3 surgeries to remove the cancer and my tonsills. I did 6 months of radiation and chemo. It was the worst experence of my life. I am still in alot of pain and my body is not the same. I do not know anyone survivors and I am hoping thru this forum I can see light at the end of the tunnel. I just want to know that there is hope for me. God Bless :p | | | 
#23633 07-02-2007 05:08 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Rochelle, you are in the right place. You will find friends here, and people who have endured what you have, and people whose experiences are different but who still care about you and have good advice to give. And they will need support and information from you, too. You will have the chance to help someone else along the way. Stay here. You will have responses that help.
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!
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#23634 07-02-2007 05:20 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Rochelle,
and welcome to the forum. I am a 4+ tonsil cancer survivor myself. It was a miserable expereince but I am doing pretty well today. I hope that you ultimately have the same experience. What kind of pain are you still having?
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)
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#23635 07-02-2007 11:08 PM | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Rochelle,
We share the exact same diagnosis. Mine was right tonsil with 2 lymph node involvement. I too had a total of 3 surgeries including a modified neck disection.
In August I will celebrate 2 years cancer free. My Docs tell me that 80% of recurrances happen in the first 2 years and 90% in the first 3. In other words, there is reason for a bit of celebration at the 2 year anniversary (you are close).
I have a bit of stiffness in my neck from the surgery, but do not have any real pain. What is it that you are having issues with? I was treated in NY at Beth Israel, where were you treated? Hang in there, we will all help each other thru this.
Regards,
Rob
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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#23636 07-03-2007 12:04 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2007 Posts: 525 | Welcome Rochelle There is indeed light at the end of the tunnel! You have been through a lot but you are among us. I must leave for work now and I have a 10:45 AM RO appnt. But as for your main question of finding survivors, there are plenty here. Read in the following two forums. "Survivor Stories" and "OCF Cancer Blogs". Looking forward to seeing you on the OCF. Fire away with any and all questions. We all walk together on this journey. Sincerely, Petey 
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method.
***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23637 07-03-2007 01:23 AM | 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 | Rochelle,
As you can read below my signature, I was a Stage IV, base of tongue with mets to 2 nodes. Surgery was not recommended and I went thru 7 weeks of concurrent rad and chemo. I am 10 months out of treatment and feeling completely back to normal. Hope this site will provides you with some answers to your pain issues.
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.
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#23638 07-03-2007 12:40 PM | Joined: Jul 2006 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2006 Posts: 68 | rochelle
hi welcome. i am a 3 yrs survivor. i had scc stage 2 on my tongue removed part of it and nodes they were all clear.going on 4 looking pretty good so far.this is a great place so welcome.
friends
lynn
linda anderson
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#23639 07-03-2007 12:41 PM | Joined: Jul 2006 Posts: 68 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2006 Posts: 68 | rochelle
hi welcome. i am a 3 yrs survivor. i had scc stage 2 on my tongue removed part of it and nodes they were all clear.going on 4 looking pretty good so far.this is a great place so welcome.
friends
lynn
linda anderson
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#23640 07-04-2007 02:06 AM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2006 Posts: 107 | Hello and goodmorning Rochelle,
I am an 18 month survior of stage 4 cancer to the tonsil and lymph nodes. I had 39IMRT radiation treatments, 3 rounds of chemo a modified neck dissection and 39 rounds of HBO for osteioradioncrosis. I must say i feel great and have minimal effects from cancer or its treatment. I loved readind robroasters reply I am getting close to that 2 year plateau and I am sure that i will get there. I always that I was going to beat this and I still am convinced. The Glass is always half full , never half empty. I believe that attitude, although not a mircle "drug" is hughly successful with great results. Hang in there my dear, fight the good fight, lean on us when you need to and offer your support to others who will come after you.
Lenny | | |
#23641 09-08-2007 05:28 AM | Joined: Jul 2007 Posts: 2 Member | | OP Member
Joined: Jul 2007 Posts: 2 | Hi Everyone,,,,,,
Well I am still here, Thank God! Well I want to tell you your stories give me hope. On wed next week my doctor thinks something is not right and I have to go do another PET scan. I feal like this will never end. I am so young and want to live life but I am consumed with anxiety over my cancer. I want to hear the word REMISSION! I also want to ask does anyone have these side effects? I have lost so much weight, I have little taste buds, My bones in my arms and legs hurt bad, I always have dry mouth, I get tierd easy, and last I have 3 great amazing young boys who have to live with my ups and down with this cancer. Thank you so much for listning. Rochelle | | |
#23642 09-08-2007 06:38 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Rochelle,
I am sorry that you are still having so many poblems post treatment. There are many people here that can answer your questions and help you get through this.
I would suggest that you give some more details. For example:
1. Where was your treatment performed?
2. What has been your follow-up treatment?
3. Have you been given any reasons why your arms and legs hurt?
I can tell your that dry mouth and loss of taste are common side effects of your treatment. I personally have not been through the treatment that you have, but many here have and they are very generous in sharing their experiences and giving advice based on those experiences. There is not another website that you could go to that will give you the amount of information that is available here and allow you to be in contact with some of the most caring and knowledgable people on the face of the earth.
Most importantly you should go to the first forum and read "New Here? Read This First" Brian has given very detailed instructions on how to get the most out of this forum. This was put up a few days after you first and last visited the site and you may have not noticed it today.
I would again suggest that you try to give as much information that you can and return here often for the answers to your questions.
I hope that you get good results from your pet scan next Wednesday.
On a pesonal note, I have noticed that many people here, including myself, prefer to use the term "cancer free" rather than being in "remission".
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#23643 09-08-2007 06:51 AM | Joined: Aug 2007 Posts: 580 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2007 Posts: 580 | Rochelle,
You are definately in the right place. I'm happy to see that you are healing.
If you cruise the forums you will find answers to almost all of your previous questions..and they are mostly recent and ongoing threads.
I have not had oral cancer but, I am 10 years cancer free. I had clear cell sarcoma in my right leg. Never thought I would see 10 years. Here I am. I am a dentist and relatively new to this site. It is such a wonderful resource and full of many stories some good and some not so good. I have found the members of the site to be welcoming, caring, intelligent, knowledgeable and extremely helpful to all.
The people here are the best!! You are one of them.
Just for you here is your word, "REMISSION", didn't do much did it? It's just a word and you and your life are not defined by a word. You define yourself in your post, you are hopeful, you are courageous, you are young and strong with conviction, you are normal and human thus the anxiety, we've all been there and it is a healthy normal part of the journey, you are changing both mentally and physically and sometimes the physical changes well, suck!, and most importantly you are a mother of, "3 great amazing young boys..." your words. I assure you as a father (..not the same as a mother.) your children love you no matter what the circumstances. So, you are not defined by words you are a wonderful, loving (3 boys...patience has to be strong in you.) mother who has met a fork in the road and are having trouble deciding on the path to take.
Let this site and the amazing, compassionate people who are here help you to Live.
I'm praying for you Rochell and your family.
Live, Laugh, Love, Learn! (my summary of my cancer journey so far.)
Mike
Dentist since 1995, 12 year Cancer Survivor, Father, Husband, Thankful to so many who supported me on my journey so far, and more than happy to comfort a friend.
Live, Laugh, Love & Learn.
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#23644 09-08-2007 09:31 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I don't like the word "remission" that's fine and good for leukemia patients. "Complete Response" (CR) is a much nicer term, often used for H&N patients.
Get some meds for your anxiety - it doesn't help to be crazy with fear at the same time. I took Zanax all throughout pre and during treatment.
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)
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#23645 09-08-2007 05:37 PM | 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 | I don't like remission either. To me that means it's only gone at the moment, and you're waiting for it to come back and bite you again, you know, that it isn't really gone, it's just inactive. After what I've been through I am not about to believe that all the grays of radiation, the drugs, and the surgery left it in an inactive state, remissive... We kicked the crap out of it, rid my body of it, and it's nowhere to be found. I like "cancer free".
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.
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#23646 09-09-2007 05:56 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Hmmmm, I like "cancer free" and "cured". Remission scares me....just my two cents worth....Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#23647 09-09-2007 08:32 AM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I am cancer-free! I wasn't "cured," which, to me, indicates a treatment. I, for one, had my cancer physically removed by surgery, and because of the aggressiveness of my surgeon, he found no margin where the cancer had crossed, and he found no node where the cancer had spread, and he removed the nodal pathway where microscopic cancer cells might have moved.
I am cancer-free, and I celebrate it!
I realize that I am a very lucky girl, and I thank God every day for the skill and aggressiveness of my surgeon.
Also, the location of my lesion is one that lends itself to the possibility of clean excision, as opposed to some other locations.
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!
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