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Even though it is raining outside I think today is going to be a good day.
Well it appears as if the bolus feeding goes well today, David will get to come home from the hospital today. I came home a couple hours ago to get some things for him to have for the ride home and low and behold there were two letters from Wells Fargo. It appears there is some miscommunication there as the letters we…
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Tube feed formula vs smoothie/shakes
Nelson has had his PEG for a few weeks now and we are using the prescribed formula - Osmolite 1.5. We are having a hard time meeting his calorie goal and he continues to lose weight. We are able to consistently get in 4.5-5 cans of the 7 that are goal. Did anyone start on formula and switch to smoothies? Do you switch it…
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Coughing
Some background: My wife has Stg4 Myoepithelial Carcinoma. Original tumor removed from her parotid gland along with rads in 2007. Hundreds of small mets in both lungs and one large met in the liver discovered in 2009. Progression of the disease has been slow but persistent. She has recently developed a persistent dry…
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Day One of Induction is in the bag
I know it won't always be this easy, but what a great way to start. You guys/gals were all spot on correct. Got there for a 9:00 AM at the lab, 9:45 with the Doc and 10:00 in the chair. Didn't get out till 4:30. So, on to the good stuff, here's what I got: Cisplatin/Docetaxel and Fluorouracil (5-FU) in the pump on my hip…
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Back to work tomorrow!!!!
Hi, my name is Helen and I haven't posted before but have frequently looked in for advice and inspiration over the past months. I am in England; far in miles but still part of this family! I was diagnosed in November 2011 with Olfactory Neuroblastoma- bit of a bombshell for a 46 yr old fit and healthy mum of children aged…
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Dad's CT scan results
Good News! The doctor said there was only a slight change since his last scan. It might have grown by 10% at the most. So he has ordered another scan at the end of November and we will see what is happening then. The change is so small he can not feel anything yet. There were not any new spots which was the best news.…
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My Final Answer
I talked to my doc (whom I love) just now and have made a final decision to not do the makeup infusions. My 2 concerns were that it had been 8 weeks since my last treatment and that the dosage is low anyway. He said the ONLY reason he gave me the option to make up is because he knew how my mind works. He also said I was…
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ENT appointment this morning.....and I learned something new :)
Got the scope and mirrors, and all looks really good....I do have swollen glands in my throat, the ones that you'd feel if you had tonsillitus....like under the chin and back towards your throat. As I mentioned a while ago, these buggers itch like there is no tomorrow...and I mean DEEP itch like a bee sting can itch. I can…
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Biopsy
Well I am back home from the hospital and a little sore, but not too much. The biopsy was a needle biopsy. Got there around 6am this morning, got into the assbackward gown and was taken into the cat scan room. was strapped pretty tight so that I could not move then run through the CT scanner, a mark was made on my upper…
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ELECTRONIC VOICEBOXES?
CAN ANYONE TELL ME ABOUT ELECTRONIC VOICE BOXES? I HAVE HAD MY TRACHE FOR TWO YEARS NOW AND I WANT TO GET RID OF IT
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Taste Buds Coming On-Line
Eaters, non eaters and want to be eaters, I went to a huge buffet today and I am here to report some success. I had a large plate of main courses which included lasagna, mac-n-cheese, pepperoni pizza, shrimp, scallops, white fish, roast beef, stir fry, fried rice, pot stickers, spicy chicken, mashed potatoes, scalloped…
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Thought to be HPV + ....now it's negative??
Due to not being a smoker and heavy drinker, original ENT and U of M Hospital(ENT also)assumed HPV. Now we just got a call that it's negative for HPV from original ENT??? UofM (ENT)is going to order another test. They say this can change the treatment plan now. We understood the HPV having good prognosis. We realize most…
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Shaved
I shaved my head today! It isn't a big deal to me, because I have been mostly bald on top for years. No combover for me. But I won this round, I took my hair off because I chose to, not due to side effects from treatment, and it is empowering to me. I am gearing up for battle and I am going to be high speed low drag.…
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Tomorrow (Tuesday) is Day One of Induction
Well, after a bit of a panic, tomorrow is the day to start induction. For those of you that haven't seen the blog (jcortney.blogspot.com) my surgeon that inserted my port on Friday called on Saturday morning and said "I had a hard time getting the port in and I'm not convinced that it's in the proper spot. So, I don't want…
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One day at a time
Well I am having to learn this quick. David is still in the hospital since he is having difficulty tolerating the tube feeds and using the bathroom. This morning at 6:30 the resident came in and was talking to him and said he may go home in a day or two. Then she asked if he has his neck surgery scheduled. You ought to…
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Saliva or Mucus
We have all said there are no dumb questions, so I hope this still stands. I hear folks describe getting back a percentage of their saliva, obviously I know what saliva is but maybe its chemo brain but how will we know its saliva coming back versus this crazy mucus we all deal with. Right now my mouth at nite and sometimes…
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Standard Chemo or Protocol (Cetuximab=Erbitax)?
Loved one Dx Stage IV, SCC BOT with 2 lymph nodes involved to neck (left side for both tongue and nodes). No surgery planned. Tx is Chemo/Rad. We are getting prepared for our October 8th treatment date. Must make a decision by this Friday (Sept 28th) as to what Chemo we'd like to do. Need some input and experience here…
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My first ENT threw a monkey wrench in all my plans last night.
Now I'm really confused. My ENT that first diagnosed my SQ called last night just to check on how I'm doing. I told him about my trip to MD Anderson and their recommendation for Induction/Chemo/Rad and no surgery. He listened carefully and made some comments about that's how Anderson has been treating this condition for 10…
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Scoped today, for the first time since mid-May!
I was last scoped during treatment, but when I visited my radiation oncologist today, he scoped me again. He said, as far as he could see, there was no evidence of disease and I was cancer free! I have my PET scan in mid-August, which of course is more detailed, but that was still good to hear. He also said my upper vocal…
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The doctor missed it
Hi everybody,was feeling good late Monday and Tuesday, then at 8am this morning the oncologist at Hershey called to say that the scan shows that I have lung cancer, they had a team meeting and did whatever they do and confirmed that a grey area was cancer. I am being scheduled for a biopsy, don't know when but right now I…
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WHAT WOULD YOU DO?
Most of you know I got my first post treatment scan last week and it was clean as a whistle. My treatment consisted of 3( rads with a weekly dose of Cisplatin. I missed the last two doses of chemo due to low blood count. Doc has asked me to decide whether I want to take the last two doses just for peace of mind. He said he…
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PET/CT
Well the time has come and I won't lie, I'm a little nervous. I was 13 weeks finished on Friday and it's time for my scans. I go tomorrow at 7:00am. I don't see my surgeon until next Friday and my rad onc until the following week so I'll have to wait at least a week to get my results....so nerve wracking!! I know right now…
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Taste Buds and Eating Normal Again?
I was diagnosed with SCC on the right side base-of-tongue in July 2010. I started treatment in late September 2010. I had 35 radiation treatments and 3 chemo (simplatin). That was 2 years ago and I am doing great. The only thing is my taste still has not come back. I can taste food, and the first couple of bites actually…
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MAY BE TIME FOR WAR AGAIN
Been gone awhile as things have been going great. Sunday morning woke up with a huge cellulitis in my face, neck and upper chest. 4 days of hardcore antibiotics and was discharged on 10 days of oral antibiotics. While I was in, a CT was ordered to see if any of the infection required draining or resection which it did not,…
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Neanderthal medicine
Does it amaze you all as much as it does me, that in this age of incredible medical discoveries, microscopic surgeries, lasers, robots, medication, gene therapy etc, that treatment for cancer is like beating your body with a huge club, until nothing would want to live in it? How and who would have ever expected a toxic…
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Question on Phenumonia
Hey all... My wife and two of the kids several weeks ago developed a cough and had runny noses, the usual "kids just started school and brought home the germs first week" thingy. Anyway, my wife prohectically (joke of course) said to me "I'm concerned you will get a bug". Well, sure nuff, I got what I thought was the "bug"…
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surgery and radiation
Unable to sleep and wondering this....my husband had a 12 hour surgery which included a very extensive transoral laser surgery to remove tumor at BOT and a selective right neck dissection. I know that surgery causes scarring at BOT am am wondering will that cause more problems swallowing post rad/chemo because I know that…
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what an experience
I'm finally sitting in our room at the Markey Cancer Center. We were in ICU until 9 this morning and then transferred to a holding cell in the basement until they had a room for David. Last night was rough. They ICU got overwhelmed and when David 12:00 am meds weren't there at 12:15 he paged. No one came until 1:45. He was…
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DPNS did not work
As many of you know after 6 years from the last time of being treated with radiated twice to the head a new side affect develop the lost of being able to swallow anything. Doctor suggested DPNS, well Deep Pharyngeal Nerve Stimulation did not work to restore any movement of the tongue so that I can swallow again. However I…
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Questions regarding mucus -- please help
In the last two weeks my husband's mucus has increased greatly as to where he can't sleep lying down. This is both in his lungs and mouth. He had a laryngectomy in March 2011 and then in April 2012 they found a tumor at the cervical of the esphogus (rare spot and due to location considered head and neck). He underwent…