#16208 08-08-2004 04:49 PM | Joined: Aug 2004 Posts: 8 Member | OP  Member
Joined: Aug 2004 Posts: 8 | My name is Charles Perez. I've recently completed 8 weeks of radiation and Chemo, the latter being a blast of Cisplatin and 5-FU. Since completing the 5-FU I'm suffering from bouts of fatigue. I'm due for a PET on August 23rd to see how much of the cancer is left in the marrow of my jawbone and then we'll just proceed from there. I didn't get a feeding tube (which seems odd in hindsight) but I've been fed TPN via my portacath for the past 3 weeks since it was impossible to swallow.
This is the best site I've come across and look forward to fellow members insights as I progress.
SCC,Left Mandible, Stage IVa, Diagnosed 2/28/04, Cisplatin/5FU, Radiation 40 days. Lower left mandible removed and replaced with bone from hip Septemeber 29th, 2004.
Happy Camper ever since!
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#16209 08-08-2004 05:02 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hello Charles,
Welcome and I hope we can help you. I also had cancer in my jawbone. I'm interested to know if you had any surgery?
Take care,
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.
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#16210 08-08-2004 05:43 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Welcome Charles This is an excellent site with supportive and informed members. It sounds like you have had exhausting treatment, I hope your upcoming PET scan will give encouraging results. With best wishes and love from Helen 
RHTonsil SCC Stage IV tx completed May 03
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#16211 08-08-2004 05:58 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Welcome Charles, WELCOME, to the site. I also had cancer of the jaw, it was removed and replaced in feb. 04 right there in ORange At UCI-IRVING. My surgeon was the best, I drive from Las Vegas to see him. He was my last chance, it was either surgery or 3 months to live. I took the surgery. I hope that we can help you here. If nothing else you can vent, yell, scream, trust me we have all done and will do it again I am sure...Always Miss Vicki | | |
#16212 08-08-2004 06:06 PM | Joined: Aug 2004 Posts: 8 Member | | OP Member
Joined: Aug 2004 Posts: 8 | Minniea:
I had some debulking and just a little exploratory surgery before the chemo/radiation. The PET will decide how much more surgery is needed. The Oncologist and Radiation doctors were quite pleased with the results of their efforts - the mass completely disappeared. My ENT has a more sobering approach; he told me that it's pretty tought to get the cancer that is already in the marrow of the jawbone and seems to be prepping me for for some radical surgery. At best it would be minor (aacording to the Radioligist/Chemo Docs), at worst the jawbone is coming out. In the next two weeks they'll all be on the same page. The thought of surgery doesn't bother me as much as more Chemo and Radiation, that really sucked! If I never have that again it'll be too soon!.
SCC,Left Mandible, Stage IVa, Diagnosed 2/28/04, Cisplatin/5FU, Radiation 40 days. Lower left mandible removed and replaced with bone from hip Septemeber 29th, 2004.
Happy Camper ever since!
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#16213 08-08-2004 06:09 PM | Joined: Aug 2004 Posts: 8 Member | | OP Member
Joined: Aug 2004 Posts: 8 | Miss Vicki and aussieh:
Thank you both for the warm welcomeand encouragement!
I'm feeling better already!
SCC,Left Mandible, Stage IVa, Diagnosed 2/28/04, Cisplatin/5FU, Radiation 40 days. Lower left mandible removed and replaced with bone from hip Septemeber 29th, 2004.
Happy Camper ever since!
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#16214 08-08-2004 11:23 PM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 30 | Charles,
I had it in the jaw bone. I had five surgery's and six weeks of radation, which ended April 2003. I agree with you the radation is the worse. They didn't expect me to make it but here I am. If I can be of any help to you let me know. | | |
#16215 08-09-2004 08:04 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 | Charles, Welcome to the neighborhood. I am sorry you are having to go through this. I am surprised you are looking at surgery after radiation. There are so many issues to face because of the radiation. Be sure and question this thoroughly with the doctors. I would believe hyperbaric oxygen chamber treatments would help the blood flow to allow speedier healing and recovery but with any active cancer, it would not be wise. You are one of the few that have mentioned TPN feedings. I could not swallow and my PEG didn't allow me to feed that way so I spent weeks with TPN nourishment. Once I tried to cut the grass and the TPN bag disintegrated while I was mowing and I noticed a big puddle of white-ish liquid on the driveway which I traced to the portable bag I was wearing. It was a mess and my wife was not too kind about it  . The lawn looked great, though, so I suppose it was worth it  . Best wishes for a quick recovery. 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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#16216 08-09-2004 09:41 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Welcome home Charles. Somehow this board will always suck you in with the love, support, and everything else. it's a wonderful resource - use it to your advantage in every way possible.
Good luck with the pet scan!!
Sabrina | | |
#16217 08-09-2004 10:18 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Charles,
I had my lower left jawbone removed and replaced with the small bone of my leg. They built me a gum and everything. Compared to the radiation the surgery was a BREEZE. 2 or 3 weeks out from surgery I was eating anything and everything I wanted. My jaw is a little stiff but I'm used to it now and I talk just as clearly as I did before. I still have a bit of "fullness" on that side of my jaw which gives my face a bit of an uneven look but it's not all that noticeable. The biggest issue I have is the loss of my bottom teeth on that side, whic will be taken care of with implants. So, don't fear the surgery. Sure it's difficult and scary but if you survived radiation you will consider the surgery a walk in the park.
Take care,
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.
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