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I think he's in a pickle! lol


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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I had tried to set up a deal with my Florida Doc that I would routinely report my BP readings (I was taking daily readings upon awakening and putting them in a spreadsheet complete with graphs; much better than one 'random' reading at Doc's office), cholesterol readings when I could get them (Here in WA, for example, some pharmacies will do them for $35). She initially agreed, but checked with her malpractice ins co and they said they wanted her to see the patient in office, so that fell through.

I'd have gone to emergency room/urgent care before paying air fare unless there were other reasons to fly back.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Pete D #91709 03-13-2009 06:14 AM
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Pickle Offline OP
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Well, it's all about more waiting now! I got the biopsy yesterday. I was in and out of the oral surgeons office in 20 minutes flat. He used novacaine. I have to wonder about the novacaine he used, though. It wasn't like the novacaine I've gotten in the dentist office. It worked super fast. He told me if I feel any pinching, to tell him right away. (I find it funny they always say to tell them stuff, when they're doing things in your mouth and you can't talk with their hands in there! I know he meant I could raise my hand or whatever, but still) What reallys ucked was he gave me three shots of novacaine. The shots themselves hurt in the roof of your mouth. But the worst was the one he gave me way in the back up there. It made it very difficult to swallow, and it felt like my throat was swollen almost shut or something. Oh, that was just terrible! That feeling of not being able to swallow and feeling like I was choking! He told me while he was doing it, that I'd feel a "little pressure". Well, he was wrong. That super novacaine he used, I felt NOTHING! I was quite impressed! He is such a nice doctor. He couldn't put any stitches in, he said, so I have two holes in the roof of my mouth about the size of say, you could stick an eraser of a #2 pencil in there easily. It took a good while to stop bleeding. It's a little hard to eat stuff, too. Can't eat anything hard, gotta watch hot things, etc. My face is swolen today, and my lips too. It's not too bad, though. For pain I'm taking advil and aleive. It helps some. It's weird because my throat and sinuses hurt, too. He used a 15 blade scapel, I guess. (that's what the assistant said he would be using.)

So I go back on the 23rd for my results and follow up. I'll probably go mad waiting, but I'm going to try to just keep busy so I don't think much about it. The oral surgeon never did say what he thought it might be. He was looking at me though like he felt sorry for me or something. I could see it in his eyes. Maybe he looks at everyone like that, though!

I think that sucks you had to fly home to go get your prescriptions! Could the doctor not have called them in to a pharmacy close to where you were or something?


I hope you all have a lovely day! smile


Pickle

Pickle #91731 03-13-2009 02:51 PM
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Hi Pickel. I'm sorry you have to join "this club", but we are a great bunch of folks willing to help you out here and I certainly hope that everything goes well for you. Keep us posted. I don't know why it is that everybody thinks they have to wait for their results for one or two weeks or longer. Most people sit on pins and needles and think the worst, naturally. If it's nothing, which we hope it is, you will be consumed in worry needlessly. Usually, within a few days, I will immediately call the doctor, or the office that performs the MRI,PET,CT Scans. Then I stop in to get the typed written report and I then know what is going on before I get to the drs. Remember, all the reports belong to YOU as well as the dr. reviewing them. If it's not convenient for you to pick them up they can drop them in the mail. Another thing I do, when I'm filling out papers for the first dr's visit and they ask who is allowed to get your medical information, I list about 3 or 4 family members..(I understand this may not be suitable for everyone) Then, if I need scripts picked up or if I want a family member to make a call for me, their name is on the contact list.....It makes it easier when people are trying to help you.....I hope I didn't yak too much here. Sometimes, I get carried away.............Good luck........Claudia


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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hi Pickle...the waiting is the worst part. If I were I would start calling on Monday. On almost all of my reports they show the date the pathologist looked at them and it was usually the same day. I can't figure out why they make us wait so long. Please keep us posted and good luck waiting these next couple of days.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Hi Pickle.

Some comments about your experience.

He probably used an local anesthetic without a vasoconstrictor and that is why it worked so fast. Some local anesthetics have a vasoconstrictor in them that make them last longer. The downside is that they also take longer to take effect. Your regular dentist probably uses one of that kind.

The reason the injections in the roof of the mouth are the most painful is because the skin is thin and attached to the bone with no room for the liquid to go anywhere. It's about the only place in the mouth where I can't give a painless injection. Believe me, I don't enjoy doing it, but have no choice.

Unfortunately you will be sore for a few days and eating will be uncomfortable. Sounds like you have a good handle on what you have to do.

It may take a day or two for the tissues to get to the lab for reading and then a couple of days for the pathologist to look at them. All in all, I would suspect that most offices get a fax within in 5-6 days. My biopsy was put in the mail on a Friday and even with the weekend, I got the fax on Tuesday at dinner time. You should call the office and tell them that you want a phone call as soon as they get the results, even if it's bad news. Think about that for a while as many people really don't want bad news over the phone.

Good luck and you will be in my prayers.

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"
wilckdds #91794 03-15-2009 10:58 AM
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Pickle Offline OP
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Thanks for the advice about calling them and getting my answers sooner. I had thought about asking them to call me, or something. I figured they wouldn't, but I guess I just don't know unless I call and ask them! And you know, Jerry, I think that I would rather have bad news on the phone, than have to drive after getting bad news. That's just me. I don't really have anyone to come with me to things. My friend came with me to the ENT appointment, but she usually works during the day and she just happened to have that day off. So maybe if it's bad, over the phone would be a better option for me, then if I need to, I can go in after it's settled and sunk in. But hopefully it'll be good news, and there will be no worries!

My mouth isn't as sore as it was. My sinuses have been all screwed up, but then they have been for a few months, so I don't think it's from the biopsy or anything. The questions I do have right now are regarding my mouth in it's current state. The popscicles have been great! I've also been eating pudding, and I tried soup and mashed potatoes. What I've found is, the popscicles and applesauce are the only things that taste good or half way decent. I have this awful taste in my mouth, I can't really explain it. It's slightly metalic tasting, and the rest I cannot describe. It's just not good at all. Everything I've tried to eat tastes nasty. Sometimes my mouth tastes worse after I've tried to eat things than before, too (mashed potatoes, for example). I don't know what it is. I thought maybe some of it is blood I'm tasting. But whatever it is, does anyone have any suggestions for other things that may taste alright? How long will this awful taste in my mouth last? I wouldn't even ask, but I obviously have to eat stuff, something, anyway. I just hope this heals soon. I absolutely LOVE potato chips, and I want some SO bad (Snyder BBQ, especially!)! You never realize how much you miss or want something you like till you can't have it!

Pickle

Pickle #91820 03-15-2009 06:15 PM
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Well when he has his hand in your mouth and tels you to let him know if it hurts.. why not rest your hand on his leg where you just have to make a short reach to get his attention. LOL Ouch that would hurt. LOL


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 #91890 03-16-2009 04:36 PM
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Hi Pickle..I think I know that taste you mean. If memory serves, it usually lasts about a week or so. I also felt like I had a film on my tongue and the only thing that made it better was water. I know it's annoying...I hope it goes away soon!!


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Feb 2009
Posts: 11
Pickle Offline OP
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Tomorrow morning I get to go to the oral surgeon to get my biopsy results. I have many different feelings about this.

First, I was thinking that maybe everything is fine. I mean, if it were bad, wouldn't they have called me and had me come in sooner? I know they have many patients, and probably the thought that they would call and have me come in sooner if it was bad is probably stupid. (come on, how many of you are really laughing at that thought?) But I guess one can hope, yes? I never did call and ask them to let me know when the results came back, as was suggested.

If everything is good, then I will say that while this whole thing has been a nightmare, it has also made me learn a lot about oral cancer, and it has given me knowledge about something people simply don't hear much about unless they are going through something like this, or have someone close to them that is going through it. And why is that? Everyone knows about breast cancer, and there are things everywhere reminding the world about it, and pushing women to take charge of their health and go get mammograms and do self exams and all of that. You can't go anywhere without seeing pink ribbons all over the place. But then there's oral cancer. How many people know about it? How many people are told over and over again how to check their mouths, or what things to watch for? Where are all of the educational materials? I really have been wondering about this.

Before I had the dentist discover those spots in my mouth, I never really thought about oral cancer. I sure as heck didn't know hardly anything about it, either. This site has helped me learn SO much. Enough so, that I was able to help educate at least a few people, a little anyway, about it while discussing this whole thing I've been going through. I found it interesting that my sister, who is a nurse didn't even know much about it. In fact, she knew very little! (and I didn't really try very hard at this point to help her learn, either. I haven't had the patience yet!) One of the things I found to be the most common thing, was everyone I talked to seem to believe that people who smoke are the ones who get oral cancer. Yes, I am a smoker, and I'm sure that is why those people were so quick to jump on me about that one. But that is not true. Oral cancer does NOT only happen to those who smoke! It can happen to anyone.

So I just wanted to say, if it turns out my biopsy comes back negative, and I'm good, that I'm not going to stop talking to people about it. I think it should be talked about more. There should be more information available to people to learn about it. You certainly have an advocate in me. Thank you for helping me learn, and for being there for me through this time.

And if it turns out to be bad, well, I know I have this place to come to, and others who have been there to talk to, and help guide me.

You have all been very supportive, and it's amazing how you can all be so generous and caring when you're going through such a horrible thing.

Anyway, I just wanted to get all that out.

My mouth feels better. I did go through a horrible week. Last Tuesday night my face began to swell, and I don't know if it was from a problem with a tooth, or what, but after my face swelled up, my face and teeth began hurting SO bad. I couldn't eat at all, or talk, or sleep, and I cried for 3 days. It's taken some time, but the swelling has gone down a lot, finally. I started an antibiotic Wednesday evening. I do have a crown the dentist wanted to remove and replace. He had said the seal wasn't good on it or something, so perhaps that is the problem. Regardless, I'm glad the pain is finally gone and I'm getting back to normal! (well, as normal as I can be, anyway)

I'll let you all know how things go tomorrow. I hope you all have a great night, and a wonderful week!


Pickle

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