#15906 07-05-2004 05:27 AM | Joined: Jul 2004 Posts: 12 Member | OP  Member
Joined: Jul 2004 Posts: 12 | Help!!!! I'm not sure how to go about posting.
I'm 35 year old white female who just had part of my tongue removed because of squamous cell carcinoma II. My husband and I drove to Mayos in Rochester MN. Everything happened so fast that my head is still spinning.
We got back home Friday and we have to go back in three weeks. The doc says that he will have to see me every 8 - 10 wks. for one year. The cancer is hard enough to deal with but the trip to Mayos is eight hours.
I look forward to talking with you all! :rolleyes: | | |
#15907 07-05-2004 06:44 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Kelli, and welcome to the site. I have heard of free mercy flights to get to treatment - some of the other members may know how to access this. You may want to get a referral to a comprensive cancer center nearby. See: http://cis.nci.nih.gov/fact/1_2.htm My doctor informed me last week that he is going to see me every 8 weeks for the next 3 years, so don't be surprised if the followup intervals don't change after a year. The second year "practice guidelines" are for exams every 2-4 months.
Gary Allsebrook
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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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#15908 07-05-2004 11:07 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Hi Kelli,
Welcome to your community. I am sorry you have to join our "club", even though it is filled with many characters, full of character. It is so unfortunate you have to drive so far for your care. There are opporunities for financial help to pay for gas and such. Check with the local cancer groups to see what resources may be available for you. You will most likely be seeing doctors for many months ahead with this cancer.
I am hoping for a speedy recovery for you and I hope you find something a bit closer for any future treatment and/or follow up.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#15909 07-05-2004 11:10 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Welcome to the board, KelliK!
Sorry for what you have had to go thru. Will radiation be part of your treatment? My husband had tongue surgery among other things. It has been a hard road, but he is doing much better now. At this time we await upcoming PET/CT scan results to be more sure of what is going on inside his body.
Take care and God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#15910 07-05-2004 02:14 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Welcome KelliK,
Hope you can get some help in the travel department. 8 hours is a lonnnng trip!
Did they say what stage your cancer was?
Were they able to cut it ou with clean margins?
Are you scheduled for any other treatment?
Hoping all goes well for you, A nice full recovery.
Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#15911 07-05-2004 04:06 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Welcome Kelli, Sorry to hear about your experience, and having to join our little club that no one want's to join.
Follow up timing sounds about right, every 8 weeks or so, the problem for you is getting there.
Where in Indiana are you? One possibility is Angle Flight, hitching rides in corporate aircraft. One of our past posters used them frequently. There's another similar orgainzation also, I'm trying to track down the ad.
Another thought, if there's an airport with private aircraft nearby, is to talk to someone there. May be able to find someone willing to fly you to Rochester for the price of splitting the cost of fuel/or aircraft rental. Younger flight instructors who are building time toward the airlines are always looking for a way to get hours in the logbook. Sounds expensive, but if you can save the cost of a hotel night it might work out. Just a thought.
Hope all goes well, best wishes
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#15912 07-05-2004 05:42 PM | Joined: Jul 2004 Posts: 12 Member | | OP Member
Joined: Jul 2004 Posts: 12 | It's nice hearing from all of you. It's been a hard day. I've been really nausous because of not eating. I can't handle being sick to my stomach!!! The doc's say that they got all the cancer and that I don't need rad/chemo. I pray that they just are not being straight with me because they want to keep my spirits up. I'm bipolar and have had a really had time with depression. I hope I'm communicating this all ok because this is my first time at all of this. | | |
#15913 07-05-2004 08:27 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | KelliK, Welcome to the site. Sorry you have to be here, especially at your young age. I would suggest you get a second opinion on the rad/chemo treatment as SCC has a nasty habit of traveling to other parts of your body. Gary mentioned your going to a cancer center. If one is in your area, that is a good idea. Even if there is no center in your area, it is a good idea to travel to one. A lot of the cancer centers have free housing for patients and their care givers, you just have to ask. With this disease, it doesn't care if you have to travel to get treatment, so we just do what we have to do to fight it. As far as eating goes, you may want to consider a feeding tube, called a "peg" by the doctors. I used one throughout my treatments of rad/chemo and beyond and it was essential for me to get better. You have to have the fuel to keep your energy level up to fight this disease. The doctors can also help with depression. There are meds available they can give you to help with depression. My prayers are with you to overcome this disease.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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