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Getting over whelmed.
5 am is getting to be the witching hour. It seems that is when Jim gets out of bed and falls or has to have a BM. Add to that his mind is going more and more each day and I am operating on 4-5 hours of sleep. The hospice councilor suggested I put Jim in their facility for a few days to get some rest but I don't think I…
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Biotene product changes? Anyone have advice?
Hi All: After using Biotene's toothpaste, mouth spray, and (especially) the oral gel for over a year now, I just had a heck of a time finding any products left on the shelf in drugstores...amazon sellers' prices (especially for shipping) have gone way up. When I checked out online what might be happening, another cancer…
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Doctor visit
I am going for a check up next week. This will be a second year visit. Last year went fine. For the past month or two I have had a sore/bump on my tongue. All the operations (3) have been on the right side of my tongue. The new thing is on the left side toward the back. I hope it is nothing, but I have lost count of how…
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First chemo
Hi, just checking in after my first chemo. cisplatin really sucks! It knocked me down for 5 days straight, three of them in the hospital. I tried everything to stay hydrated and could not keep anyhting down at all. Meds did not help, but now feel much better. Radiation is not nearly as bad, eight txs done so far. I lost 16…
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Fluoride Trays left in too long
Accidentally left the fluoride trays in for 45 minutes tonight, also I boiled them to clean them, shrunk a little but they still fit well over my teeth, I am more concerned that I left them in one time for 45 minutes instead of just 10 minutes, anyone have any experience with this, I am wondering about the toxic affects of…
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scan results
No new recurrences, prayers answered. Tumor around carotid shrunk about 1 cm. Knewv chemo would not eliminate. Since there is no new recurence, the chemo is done and I can go back to Mayo to get SBRT on the tumor. Tenatively, a planning session at Mayo next Tuesday w/MRI and then back the following week for 5 days of…
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Great day today somewhat
Well today has been a pretty good day. Jim was alert most of the morning and evening. His mind however is failing. He did not know my sister, Donna yesterday and he did not know my sister, who is staying with us for a few weeks, this morning. He kept seeing a dog on the front porch and a man in the house. He got emotional…
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3 and 1/2 years only
Another batch of good news. I am behind Duggie by about 6 months, the latest PET/CT scan back full of excellent results. The trials and tribulations of chemo/rads seems a distant memory now. I still have a slight bit of dry mouth to contend with and I've recently joined the thyroid club, but it's all good. As Duggie said,…
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throat too swollen to fit in mask
well..my hunny couldnt have his treatment today as his throat was too swollen and the mask wouldnt fit...poor guy...the phlem is so bad he feels like he is drowning..we are only in our 4th week..im glad they are giving him a break for a few days and some new meds..hopefully he will feel better in a few days..thanks for…
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When?
Almost a year now since I heard those words that you have cancer been through all the treatments and all. Yet it still goes off in my head when is it going to show up and where at this time? I was just wondering if anyone else has these thoughts?
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Couple inspirational sites
Hi, Many of the board's topics are related to the physical issues resulting from oral cancer's diagnosis, treatment, and recovery. Mental and emotional topics often seem a byproduct of some physical issue. Here are a couple links to sites offering wonderful support on topics of the soul and mind. An article today prodded…
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Uncle's Condition
Just recieved news that my uncle who has been battling cancer in bones and gaul bladder and now brain was told to call in Hospice,Hate this disease,I pray that when that time comes he is out of pain and comfortable,Have watched my Dad and Sister both pass away from it,sorry had to vent.Just askin for prayers, Thanks Chris
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What is that?
Last night Jim coughrd up something that looked like tissue. It was about the size of a dime. The next cough produced blood spray but very little. Could it be lung tissue or throat tissue? Hospice nurse didn't seem to concerned but would send a nurse if I wanted. Said if he was resting she would take her time sending nurse…
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Good News from Dr.
Got good news today, all 23 nodes they removed were clean, and also all my margins. So looks like I am cancer free...at least as of today....except.. There was one part of the path that said: "Angiolymphatic Invasion is Present". In the comments it says: "An immunoperoxidase stain for D2-40 highlights carcinoma within…
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Uh Oh
So, I got scoped poked and prodded on Feb 18th and got the all clear. I had a bit of a heart scare as "scanxiety" reared it's ugly head and sent me to the ER with chest pain. After a full cardiac workup, I've been given that all clear there as well. Overall, I've been doing Ok at almost a year out of treatment. While I…
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taking ondansetron and vomiting
They have givin me ondansetron to help nasua but have taken it twice now and both times ended up vomitng...is there anything else I can take??
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Still having pain 12 weeks post treatment for base tongue cancer.
My father is still having quite a bit of pain in the back of his tongue where he was radiated. Is that common 12 weeks out. Shouldn't the pain go away by now?!
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mom with a new trach
My mom was diagnosed back in December wiyth T3 larnix cancer. She then moved in with me and my husband. She has received a g-tube which has worked great due to her not being able to swollow. I am going to pat myself on the back for this one. During all of her treatments so far she has maintained her weight. Dr are amazed…
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Is This Normal/Standard Practice?
Locally advanced tonsil cancer (Stage 4). Multiple lymph node involvement. No surgery. 7 weeks of treatment (35 rads and 7 cisplatin). Had one CT and then one PET scan a few months after treatment. Seen by oncologist every 2-3 months. Told will never receive another scan, CT or PET scan, or throat scope, unless physical…
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Terminal Restlessness UPDATE
Jim has "Terminal Restlessness" that keeps him moving, jerking, seeing people and things and restless. Anyone have experience with this. I looked it up on line. I know I shouldn't but I never heard of this before and wanted to know. The oncologist added Haldon which helped some but he still could not be still so they…
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tongue swelling
OK..we are experiencing tongue swelling...anyone have any rememdies for that? Almost thru the third week of rads... thanks Ya'll!!!
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Questions on brothers neck dissection - update
Hey everyone ! I am going to ask those of you with experience with staples after surgery what to expect for my brother. I had stitches...so a bit different. He read the surgical report to me and it sounds not so good. He won't hear about the final pathology for a few days yet. They removed 3 tumors from the left side of…
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Mucoepidermoid carcinoma Low Grade - Require Radiation?
Dear All, My wife is diagonised with mucoepidermoid carcinoma @ Hard palate last Nov 2013. She had undergone surgery and the pathology report has come as LOW GRADE. Post operation report comes as the tumor was removed with all the margins clear. Our Oncologist now giving us two option for further treatment, 1. Let to…
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magnesium deficiency from Erbitux
With only one more tx to go, they have decided that I have a magnesium deficiency from the Erbitux. They put me on a perscription and I was thinking a week or so but it had 60 pills and several refills. Did anyone else experience this? If so, how long were you on meds? Why can't I just eat some (creamed) spinach or…
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3rd week of radiation and chemo combo
well..my hunny is on his third week of radiation and so far so good...starting to have trouble swallowing but as long as he keeps ice and water going in all day...its doable right now..hope it continues to be manageable...thank you all for your help and tips...Lysine has helped keep his acid level down..and glutamine has…
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Update on Susan
Many of you have helped my friend Susan, by sending scarves,hats to help her on her journey with breast cancer. Today, I'm so thrilled to tell you..no more chemo, she is suffering with neruopathy in her hands and feet, and the Drs decided not to go on with chemo. Next week she goes to talk about radiation, there may be a…
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Branchial Cystt or SCC
Hello. I am new to this but have messaged some great people who have really been helpful. I am 47 and from Liverpool UK. I have a submandibular neck lump. It is either SCC or a branchial cyst.It is being removed Monday and will have a biopsy whilst in out. If it is cancer I will wake up with a neck dissection. I have two…
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Newbie of tongue cancer
I was diagnosed with T2 tongue cancer right before Christmas. For the first month all the doctors I saw were saying radiation and possible chemo, which the next Dr I saw said I didn't need. Then after a series of events, mainly me getting the flu and having to postpone all the appts I had made. I had to see yet another new…
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Mandibular resecting
I was treated for MEC BOT early in 2009 and have been declared NED on every scan since fall 2009. That's the good (hell, wonderful!) news. The bad news is that I've more than my share of side effects over the years. The most serious of them is ORN, which has progressed to me needing my left jaw bone replaced with a bone…
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The journey is moving on
The hospice nurse came yesterday as Jim got more and more restless and started twitching a lot. Jim's oncologist and nurse happened to be on call. Added Haldoron, not sure of spelling, which took until this morning around 11 am to help so I was up most of night. Finally fell asleep some where after 4 am untill 8:30 am. He…