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#11683 08-18-2007 08:01 PM
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Minnie,
the good thing about OCF is that we don't all have to be insane at the same time. (PS the name of the Montovani song in The Cuckoo's Nest during med time was "Charmaine")

Maybe Brian needs to add another "F" - "Oral Cancer Fear Factor".

I had a scare this week myself which had me running back to the H&N surgeon, three weeks after my routine 4 month followup - it turns out that I have some kind of candidiasis (they cultured it, will find out next week). It's not typical thrush - no white patches - but I'm taking an anti-fungal and it's responding. Kind of strange after 4 years of not even having a cold. I had severe problems with thrush going through treatment - I took 400mg of Diflucan daily as a maintenance dose. They have me on Clotrimazole because of my liver (Diflucan is hard on the liver and during treatment the risk of thrush going systemic was far greater then the risk to the liver). I've also been getting exhaustive liver tests because my numbers spiked during my 6 month labs - actually got an automatic referal to a gastro-enterologist liver specialist. I have HCV so they have to watch that as well - hey - stereo fear factor;-)
Anyway all of the numbers dropped in a followup bloodtest(s) and a Fibrosure test indicated mild scaring so they recommended waiting a few years until better drugs are available. It's a slow moving freight so I am not too concerned. Sounds like a plan to me. I have no burning desire to have Interferon and Ribivarin ct.


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)
#11684 08-19-2007 11:12 AM
Joined: Dec 2003
Posts: 528
"OCF Down Under"
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Dear Minnie

You have been the giver of support during the four years I've known you. I also had to learn to open to the love offered by others - one of the gifts cancer brought to me. I am so pleased that your support group has rallied and that you are well.

Love and light from Helen


RHTonsil SCC Stage IV tx completed May 03
#11685 08-19-2007 03:29 PM
Joined: Apr 2005
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Gee, Minnie, when we were emailing in May and June it seemed that you were healing and it sounded like the sore was going away.

I was so sorry to read that you have been going through such mental anguish over this. I can understand why you want to get the biopsy done. Are you seeing your ENT or the dentist next week, you said your regular doctor?

I don't think you've mentioned why your upper denture is no good, but as Mike said, getting a functional denture up there, will help a great deal to solve the problem of your tongue rubbing against the lower implants.

As always, feel free to call me or write, if that is easier.

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"
#11686 08-23-2007 04:30 AM
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Hi Minnie,
I am currently the 25 year old daughter of a man fighter cancer, so I felt compelled to write. All I can tell you is that we (your daughter and me) WANT more than anything to be there for you. We know you're scared and anxious and all the other emotions you all must be feeling, but we want to help. Since we can't do anything to actively fight the cancer the way a doctor can, please let her be there emotionally and with the every day stuff. I'm getting married in December and trying to plan it while dealing with all this, so I understand you trying to protect your daughter and not wanting to add one more "thing" to her plate. But you're doing both yourself and her a favor by letting her in. I'm sure part of her was relieved to see you break-down. You're letting yourself be human...

I also want to thank the rest of you for all your posts. I mostly "lurk" here, but I've learned SO much and really feel like I am now contributing to the fight. You're all in my prayers.


Stephanie -
Father (60yr., nonsmoker, social drinker) dx 6/18/07 w/ Stage4a SCC tonsil. Mets to 3 LN. Induct. chemo (taxol,carboplatin,erbitux) 6/28-8/14; Concurrent Chemo(cisplatin&erbitux) w/ IMRT x 44 8/20-10/2. Surgery to come.
#11687 08-23-2007 05:13 AM
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Minnie, I'm so sorry you went through that but so glad it turned out to probably not be a recurrence. I have a spot on my tongue that intermittently rubs against my teeth, esp. now that I am trying to get all my nutrition orally and it often worries me although both my dentist and my ENT say it all looks OK.

I can tell from your posts how much regret you have about breaking down in front of your adult daughter but I suspect it will forge a new closer and more adult relationship between the two of you, and may have let her feel important to you in a way she hadn't before. And you need to let yourself be human, you know.

I wish you had posted about your fears here, I think several of us could have encouraged you to get in and see the doctor sooner before assuming you had a recurrence. I've done that fearful and keeping quiet over a scare myself, it's no fun.

I feel like you have been such a constant support though, through everything I've been through, I would have loved to be able to give more back.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#11688 08-23-2007 02:09 PM
Joined: Jun 2007
Posts: 510
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Minnie: I'm sure you will post just as soon as you have your report. I just wanted to give you a BIG HUG and tell you how special I think you are! I'm sure all the rest feel the same.
Lois


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#11689 08-24-2007 08:57 PM
Joined: Aug 2003
Posts: 1,627
minniea Offline OP
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Hi Everyone,
I had a biopsy done on Tuesday and will get the results this coming Tuesday. I won't lie, I'm terrified. My doctor said he didn't like the way it looked but that he also couldn't tell me by looking at it if it was cancer. He said it had signs that were not typical of cancer but he was concerned that it hadn't healed by now. He also sent me for a CT scan in case, which I had done today. The area itself looks better today then it has in a couple months so we think that's a positive sign. Four years of easing off my worries and now they are right at the forefront again. My husband and I have had some deep talks the past few days, some alone, some with the older girls, and have all plans in place if it's the worst case scenario. Brian, if it is positive for cancer, my husband has asked if you would talk with him.
So, pray, send up good wishes, do whatever it is your spirituality dictates in your life. I didn't want to bring this to the board cause we have enough "bad" news going on but I realized how much I need to bring it here. Hopefully, on Tuesday, I can post some good news. If not, I will come here and start another battle with the support of all of you.
Love,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
#11690 08-25-2007 01:52 AM
Joined: Feb 2005
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Minnie,

I hope you can feel all the prayer, well-wishes and love being sent your way (and to your entire family as well) because there are so many people on this board who care about you and are hoping you have that best possible outcome. And we will be right here for you whichever way it turns out, of course.

Just for what it's worth, the fact that the area looks better sounds like a good sign to me too. My tongue cancer never got "better" at all back when I could see it and didn't know it was cancer--just gradually worse and worse.

I know it's going to be a long wait until Tuesday for you--I hope you can spend some of the time doing something enjoyable and manage to get your mind off it even!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#11691 08-25-2007 05:05 AM
Joined: Sep 2006
Posts: 493
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Minnie,

Yours is the post I fear to read. I'll pray for good news for you.

Tim


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
#11692 08-25-2007 07:23 AM
Joined: Apr 2005
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JAM Offline
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Minnie, God Speed, Amy in the Oz


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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