#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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