Hi, I am a tongue cancer survivor and I am glad to have found The Oral Cancer Foundation. I am glad to have found a place for those dealing with oral cancer. There is so much attention to other cancers and not many for those who suffer with oral cancer. I am a volunteer and committee member for the ACS Relay For Life. When I am feeling well, volunteering and helping others with cancer gives my life purpose. Thank you for having me.
Hi Paula, glad you're here. There are a lot of people who come here for advice and it's always good to have another voice of experience. Iknow that oral cancer gets completely overlooked at our local RFL. As a volunteer perhaps you could get Brian Hill to send you some hand outs.
Paula,
Welcome and as I told Laura, Gina will be in touch as soon as she can.
Paula, welcome to OCF! Its always nice to have another survivor join our forum.
The Oral Cancer Foundation is a very small nonprofit organization which depends on its volunteers and donations to stay running. They invest in things to help oral cancer patients thru studies, research, clinical trials along with running this website. There are also brochures printed that can be given to dental professionals. I always carry some with me to make sure all my doctors have them on hand. If you would like some brochures, call the OCF office at 949 646-8000. They are open PST 9:30-5 M-F
I feel I did not give enough info after reading your posts. I am a newbie, so I will do my best.
Diagnosed July 2009 at 43. Had Partial glosectomy. Six month later after PET scan another partial glosectomy January 2010 resulting in half my tongue removed. Numbness and no feeling on right side of tongue and mouth. Constant pain that does not let up and makes eating difficult. Many nasal and feeding tubes resulting in large weigh loss and constant battle to keep weight on. All the surgeries and meds caused the damage of the nerve the controls your stomach to contract resulting in severe gastropharisis and allergic to the only meds that help. Suffer from debilitating nausea and inject Zofran at least 4 times daily to be able to function. My last PEG got dislodged and nicked a blood vessel and my entire abdomen filled with blood and almost died. Spent 6 days in the hospital in September 2011. Currently my voice left 10 days ago and back at the Oncologist. Had a scope and biopsy and another PET on this coming Monday. Try to do all I can to educate others and volunteer when I am well enough. I try hard not to give in to the chronic illness and be as productive as I can. I work with new cancer patients and try to help them and give them through the initial diagnosis process. That is my story. Paula Foster
Paula thanks for adding some more info about your journey. Im right there with you with still using zofran. I have alot of nausea and end up spending a couple days a month on the couch or worse being woken up in the night sick as a dog. Its horrible so I sure feel for you having to be on zofran every day.
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Hi Paula,
Thanks for sharing your story. I'm so sorry it has been such a battle. I am amazed at your positive attitude toward life and helping others. It is people like you that keep people going, even when you are feeling ill yourself. Thank you for that!
Welcome to OCF. We battle together!!
Blessings,
Kathy
Welcome Paula! You're an inspiration!
David, I totally agree that Oral Cancer is overlooked at the RFL and that really bothers me. This is one of the reasons I am so glad that I found this organization. There was no one else I knew who was dealing with oral cancer. I would gladly pass out any hand outs that would educate.
Christine, we share the same in the severe nausea. It controls my life. Same way, can go days, weeks or months trapped inside. Zofran pills are not effective so injections. Sometimes I vomit so violently it scares me. I too am very glad to be alive!!
Kathy, having cancer has been a life changing experience. Although there are many times I am extremely ill and frustrated, it has transformed me in every way. The only family support I have is my husband and children so during my first surgery I was isolated and alone during the day. It has brought the most wonderful people into my life and giving back when it is physically possible for me gives my life purpose. I believe that everything happens for a purpose and puts you on the path you should be on. That path isn't always easy.
Paula
Have you considered getting a low profile feeding tube, commonly referred to as a "button"? Unlike the standard PEG with its long dangling tube, the button almost never gets dislodged or pulled out, can only fit in correctly instead of too deep or too shallow, cuts down if not eliminates granulation tissue, needs no clamps since a anti-reflux valve does not let it leak, and can be changed at home safely. I should have switched over years ago but my CCC's lack of experience with them and unwarranted fears of clogging the anti-reflux valve with all my crushed medicines and blenderized diet held me back.
If you do get a button, the AMT mini-one is much better than the Mic-Key one that is the default choice of hospitals due to marketing and contracts.
Glad you found us
Charm
Hi Frank, I did have a Mickey button place in early 2011. It became dislodged and nicked a blood vessel. I knew something was wrong and went to the ER, they ordered the wrong test, an X-ray, which I knew would never see if the button had dislodged. I have a medical background. They sent me home. My abdomen filled with blood like I was pregnant and back to the ER and in the hospital for six days where I almost died. It was too late to aspirate the blood and was left with a large hematoma that took my body a very long time to reabsorb. A new PEG was put in, then got severely infected. I have had nasal, traditional PEG and button and opt for non of those right now. I am trying my best to keep weight on without a any tubes but thank you for the suggestion.
Paula,
You are another inspiration to me. We have so many on this site that have had treacherous battles yet remain positive and helpful. Just amazes me. Thank you!!
Kathy
Paula
.
If a button does cause problems, more likely than not it will be a MicKey (Kimberly Clark). My one mickey button burst it's balloon and fell out in three weeks. On all the forums for tubies, the consensus is that there has been major quality issues with the Mickeys compared with AMT mini ones.
I'm sorry to hear all your problems with the PEG. But you are doing a good service here by sharing them. For the longest time, I have been a voice in the wilderness here at OCF about PEGs not being as harmless and safe as touted.
Sad to say, most doctors are clueless on PEG complications. heck many of them can not even measure button length correctly (they forget to both laying down and sitting up) Their treatment of you is shocking. Actually my wife is much better at changing the button than any of my doctors ever was.
Not a big deal, but Frack is not a typo for Frank. It's just that my first choice of "Old F..k" does not meet OCF standards even though George Carlin used it. It's from the reimagined version of Battlestar Galactica and means the same thing in that future fictional world.
Sorry for the mix up Frack, After the several year nighmare with these PEGs, against my doctors advice I am going without. For me they were a nightmare. The nasal tubes are extremely painful and of course out in the open. I didn't really care, I still went about my business. After last September and then the serious infection earlier this year, for me if I can do without it I will. I have to be very careful eating though. I can't try to eat any solid food without adult supervision i.e. my husband. I don't very often, but when I do he is present. Last month I was home alone and saw a box of Milk Duds in the pantry. I made the mistake and ate one. It got lodged in my throat, and as I was choking, I thought, after going through all this cancer stuff I am going to be done in by a Milk Dud and my family will find me dead. Luckily I was able to dislodge it. I will never try that again!
Paula
no apologies necessary. You are a super woman to persevere through such trauma. I get just going about one's business.
The first months with feeding tube, when I had to use the gravity drip bag because I couldn't take the bolus syringe rate of feeding, I would carry my folding tube pole into resturants, set it up, pour Jevity into the bag, hang the bag up on the top hook and then connect to my tube. since the pole is six feet tall, it really stood out in the entire restaurant but we were travelling and my wife had to eat somewhere.
Hang in there, You are a great example of how we can overcome anything. We're glad to have you here at OCF
Charm
Hi Paula. It's lovely to meet you.