| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Sam! Small world, huh!!! Im glad you have joined OCF. Let me first help you with how to navigate this site. When you want to make a post, its only necessary to post it once. Give it time and you will get responses. Next you should begin your very own post so that you get the most responses. This thread was started by someone else so this takes away from their questions. To make your own brand new post click on the topic you want to put it under then click new post and type away. If you need more help just say so!!!
The answer is unfortunately yes, cancer can come back very quickly. Ive had it 3 times in 3 years. Ive seen people have a recurrence within a couple months of finished radiation. All it takes is one teeny-tiny cell missed by the radiation. I hope its not a recurrence, we both know how those are not easy to manage. But it can be done!!!!! Thats one more thing you will learn here, never give up even when things look bleak, keep trying to be positive.
ChristineSCC 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  | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | "Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."
-Dale Carnegie
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Mar 2011 Posts: 20 Member | | Member
Joined: Mar 2011 Posts: 20 | Hi Liza, I'm new here. Don't worry about "getting your happy back" It'll come. I had tonsil cancer 6 years ago (stage 4) and survived. (4 yrs after open heart surgery) Been through the ringer. I'm glad for this site and wish I had known about it then. I will say that even though the experience was horrible at the time, the 100's of people (patients and families) I have been able to help through the Wellness Community and amoung clients and friends made it worth it. The changes in me as a man would not have happened nor could I have helped others as often had I not gone through the ordeal. I can honestly say that even though I hated the experience at the time, I would do it again. You hang in there and if I can help in any way (like what you can try eating at different stages of the radiation and what to avoid, just ask. Big suggestion!!! Keep a journal maybe online in a blog. I really wish I had done that. Helping others through your experience will get that "happy" back faster than anything else. Right up there with hugs Praying for you. Take care, Chris
Stage 4 squamous cell tonsil cancer. Two lymph nodes involved surgically removed before source found to be tonsil. Implant radiation right on tonsil, regular mask radiation therapy for two months and a final Implant radiation. All clear confirmed by PET scans for 6 years.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ingrid, you sound like a good fighter. Hate to say wewlcome to our home, but it's the best place for understanding people. Most are knowledgeable too. That is a great question Sam. But it happens and we just have to accpet it and go on with treatments. It's possible that in the future, you will have reactions to a few things that you have been thru. We play a crazy game with OC but can win the battle.
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
| | | | | Joined: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | Hi Chris
Congratulations on being a 6 year survivor!! Wow, I am so inspired when I see or hear of survivors like you :-). And thank you for your advice, I certainly am looking at cancer as something I needed to experience in order to help others. As a nurse that has always been my motivation, but I am thinking that maybe I need to shift my career into something that involves this illness.
My treatment will begin in about 3 weeks. The radiologist wants my neck to heal a bit more before I undergo radiotherapy. Had a CT scan the other day which showed no signs of mets anywhere in my chest or abdomen..so relieved!! Even though the tx plan scares me, I am also looking at it as a gift from God to aid in my healing. Guess, its the old saying, 'no pain. no gain'!!
The people on this site are amazing...I really don't think I could've got through the early recurrence fear factor if I didn't have all these guys lifting my spirits up. And now, it looks like you will be involved in helping people on this site as well!! And you can bet that I will be asking heaps of questions regarding eating and pain management!! Not having taste buds is such a sad thing for me as I am such a foodie! Got to believe my taste will come back sooner or later.
It's nice to meet you Chris...keep up your good work and thanks again for your post. Have a lovely day :-)
Liza
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Oh how I wish my taste buds would come running home. I guess I am thankful for being able to taste the 1st bite. It lets me know I'm not chewing and old shoe that was discasrded. The burning of the mouth never lets up but you can learn to ignore it with some magic Mouthwash numbing doing it's job. One thing for sure. As long as we feel the misery, we know we are alive.
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
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | @ Chris and Liza: Hi friends!!!! Love to you both!!!
Chris, I am so happy to see you here! You have so many positive things to share.
Thank you, again, for your suggestions and the doctor recommendations. I have new doctors lined up...Miller or Ahn for radiation if he needs it. He doesn't want to resume chemo. It isn't going well for him and he's losing weight again. Note to self...call the acupuncturist if he goes back into treatment.
xoxoxox to all!
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.
| | | | | Joined: Mar 2011 Posts: 20 Member | | Member
Joined: Mar 2011 Posts: 20 | Lizzy,
As you get further into your radiation treatments, if you keep us posted, I'll be glad to share what I could and couldn't stand to eat.
Sandy,
Thanks for the welcome.
My pleasure. Call the acupuncturist anyway. It would be good just to boost his general immunity
I had Hesselgesser, but his partners, Miller and Ahn (client of mine) are both great also.
Stage 4 squamous cell tonsil cancer. Two lymph nodes involved surgically removed before source found to be tonsil. Implant radiation right on tonsil, regular mask radiation therapy for two months and a final Implant radiation. All clear confirmed by PET scans for 6 years.
| | | | | Joined: Mar 2011 Posts: 20 Member | | Member
Joined: Mar 2011 Posts: 20 | [quote=Lizzy67]Hi Chris Congratulations on being a 6 year survivor!! Wow, I am so inspired when I see or hear of survivors like you :-). And thank you for your advice, I certainly am looking at cancer as something I needed to experience in order to help others. I don't know if you can get it there but check a movie called "The Doctor" with William Hurt. It is right up your ally It's one of my favorites (true story too) Chris
Stage 4 squamous cell tonsil cancer. Two lymph nodes involved surgically removed before source found to be tonsil. Implant radiation right on tonsil, regular mask radiation therapy for two months and a final Implant radiation. All clear confirmed by PET scans for 6 years.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Liza, here is a list of easy to eat foods. I found during radiation that texture played a huge part in what I ate. Since you are not from the US, the things on this list might not be something you normally would eat. Hope it helps! http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
ChristineSCC 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 | | |
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