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TL4885 #103984 09-22-2009 04:54 PM
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Hey TL4885,

In just skimming forwards, it looked like this question got missed?

Not being a doctor or ever having played one on TV, I would remember to mention that "crick in his cheek" to a doctor for sure.

Post treatment, pains and twitches continue, but declined as time went on for me, with a few ticks still present after a couple of years.

Take the smile, laughter and apperent good mood as a gift to be enjoyed, while being the vigilant and devoted care giver that is seems you are.

I hope the journey is quick and sucessful,

UncleVern


ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
UncleVern #104008 09-22-2009 08:44 PM
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UncleVern, Thanks for your reply. I checked for responses for a few days and figured everyone was just tired of responding to me because Brian is not willing to fight a conventional fight. I appreciate your taking the time to respond. He is still working but we are having a very rapid pulse rate. He goes to 100 mg of MTX next week. His Dr has told him his heart may not hold up to the dose, but this is Brians way. He IS going to die. I have accepted that, but I am in no way ready for it. He is not affectionate or loving anymore--not even in his tone, but I know he loves me. Days are hard and nights are so long, but we are making it pretty good. Thank you again so much for your support. It is appreciated more than you will ever know. Teresa


CG SCC of lower gum. DX 6/09, SURGERY 7/09, MTX Started 8/09. Single RX treatment 8/18/09
TL4885 #104431 09-30-2009 05:24 AM
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Posts: 453
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Theresa, I so feel for you. This must be so sad for you and you must have many, many questions as to why he won't have conventional treatment. I watched Steve have 7 weeks of treatment and not once did he seem as ill as your brian. I feel sad for Brian that he didn't give it a try and that in the end he's chosen a harder road. But it's not for me to say what he should do. I suppose he know's his own mind and trust me I know how hard it is to live with a stubborn man. But I do feel very sad for how hard this must be for you. You must be an incredibly strong woman to be able to go through this. My thoughts will be with you as you travel this painful road.

Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
WendyG #104443 09-30-2009 10:02 AM
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Continued prayers your way.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #104618 10-03-2009 03:01 PM
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Thanks to all for your continued support. We went to two doses of 150mg methotrexate this week. The first dose was Tuesday and was not too bad other than draining alot of Brian's energy. He had his mom shave his head on Wed. because his hair, which has always been extremely thick, was thinning to the point of being noticable. She noticed as she used the shears that is was falling out and raised some questions to him.I hope she will not let up until he finally reveals his condition to her.
Dose two at 150 mg was last night and he woke with very little vision this morning. Can anyone tell me if this is a temporary side effect or if vision impairment is usually permanent. I am, of course , very upset and concerned with this development. Thanks for any info you may be able to offer. Teresa


CG SCC of lower gum. DX 6/09, SURGERY 7/09, MTX Started 8/09. Single RX treatment 8/18/09
TL4885 #104624 10-03-2009 08:51 PM
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Hi Teresa,
I don't know much about the type of medication your friend is on but like other chemo therapies it sounds like it can cause a wide array of serious side effects. My husband was on 5fu and cisplatin. His treatment had to be briefly interrupted due to the severity of the side effects. Your friend needs to report these symptoms to his doctor...ASAP! Sometimes they can give him other medications to reduce the severity of the symptoms. Please tell him that there is no need for him to suffer like this and remind him that there are other treatment options.
Pat


Base of tongue spread to 2 lymph nodes.stg?? Dx 5/5/09 peg
Tx started with 35 rad, 7 weeks cisplatin, 2 weeks 5-fu.
completed second course of tx with reduced dose of cisplatin &
5-fu. All clear
Post radiation swallowing difficulties 12 years later
cjack #104979 10-10-2009 05:44 AM
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Posts: 453
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Hi Teresa, sorry to say I'm not much help with the medication Brian is on. Steve had cisplatin and his only side effect was nausea. It's a shame you can't get Brian to check out this site. Hopefully it would make him realise that the path he has chosen seems so much harder than the conventional treatment that he didn't want. I hope you are both ok. You are both in my thoughts continously and I do wonder how you must be coping. You surely are a tough lady.

Wendy


Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
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