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Ray1971 #98309 06-28-2009 11:07 AM
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Ray,

You are very intellignet and very compassionate. Your passion about Sone going back shows that. You know how hard it is and provide much needed support to those of us here.

If I ever need radiation, which my doc said I may in the future...I will be coming to you for support:) And to whip my butt in gear!!

Last edited by suzanne98; 06-28-2009 11:08 AM.

Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #98312 06-28-2009 12:42 PM
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Sone, I am so, so sorry that you are going through this and things are beyond brutal. My husband's pain, mucus production, loss of voice and fatigue all peaked around the 3rd week of radiation. My husband didn't want to know ANYTHING about the side effects of treatments going into this and said he would just take things as they came. He was convinced that he would drive himself to treatments and certainly not need the feeding tube put in. Week 3 the shit hit the fan and he was literally knocked on his ass. BUT....the pain and side effects didn't get any worse they were just the same.

PLEASE, PLEASE go back to treatments. I know you are scared and probably feeling very desperate. Your children need you. My husband looked at me one day during his treatment and said "I'm only continuing this because of you". I said GREAT because I need you.

My husband has already told me that if the cancer is not gone or comes back he is done with treatments, no more chemo, no more radiation. That scares me to death and I pray every day that we beat this because I know he is serious. BUT....I am thankful that he toughed it out and did everything possible to beat this from the start. Please go back and talk to your MO not your RO. Our MO was our number 1 go to person for the terible, debilitating side effects. I'll keep you in my prayers. Hugs, Wanda


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 #98314 06-28-2009 01:13 PM
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Sone, do you think you have heard enough about your quitting?? Better go back and finish it and live a long life for your family. I AM SURE THEY WILL BE GALD TO PUT UP WITH COMPLAINING OR RHATEVER YOU DO BUT I ALSO BET IT MAKES THEM VERY Happy to have you there to complain. Go for the gold and live.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #98322 06-28-2009 01:39 PM
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Posts: 3,552
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I fear that she hasn't been back to read these posts. Some of you may wish to pm her.


Gary Allsebrook
***********************************
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)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #98323 06-28-2009 01:44 PM
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I thought that too Gary. I did send her a PM but have not heard back.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #98383 06-29-2009 10:48 AM
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Posts: 13
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OK. I finished treatment #15 today.

Thanks for your "encouragement", or at the very least, passion. The new pain meds are working to relieve the unbearable pain. Now I'm just left with the wretched pain. I hope I can make it throught the next 18. My mouth burned the entire time the radiation was zapping me today.

I still would like to hear from someone else who stopped their treatments and restarted. Anyone?

Sone #98384 06-29-2009 11:02 AM
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Posts: 716
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Sone,

WAY TO GO!!...

Take it one day at a time and go to your doctor with every little concern.

Just by chance do you have a lot of fillings in your teeth? Maybe, everything is bouncing off of your fillings and burning your mouth a little earlier then normal.

Btw, my mouth was a mess.

Keep on stretching that mouth/tongue and rinse your mouth all day long with that magic mouthwash...

If you don't have any...get some from your doctor.

Good luck and before you know it you'll be finished.




Last edited by Ray1971; 06-29-2009 11:02 AM.

7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Sone #98385 06-29-2009 11:05 AM
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Posts: 3,552
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Sone,
they can increase your Fentanyl, but only 25mcg at a time. Keep letting them know that your pain threshold is still too high. Give the current dose time to work (24 hours) if they upped your Fentanyl. They can also increase your breakthrough meds in the meantime. It's a balancing act between the breakthrough meds and the long term meds so always let the pain managment team your dose rates, especially your breakthrough pain meds. Some doctors really need to be pushed on this.

A week off shouldn't make a difference. Some us us had a week off to recoup and others because of machine breakdowns. Essentially they have to give you the radiation, roughly all at the same time, for it to be most effective. This is the reason your RO was upset (which is a good thing because that means you have a strong chance for surviving this).

If you are using a saline rinse you want to stop. Even the smallest amount of salt can burn like crazy. The acidity in fruit can also burn. Do you have a PEG?

I am SO releived that you restarted treatment! Please keep us informed.

Last edited by Gary; 06-29-2009 11:08 AM.

Gary Allsebrook
***********************************
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)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Ray1971 #98387 06-29-2009 11:16 AM
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Posts: 211
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Sone,

I recall some people having to stop for a week due to side effects, etc. and then re-starting. My husband said there were times when he wanted to stop as well. In addition to everything everyone else has said, even a mild case of thrush can make your mouth burn terribly and can keep the pain killers from doing their work. My husband has dealt with that post-treatment several times as well. If you aren't already on a daily thrush medicine - ask about that asap(need 2 weeks or more of treatment to get rid of the thrush and in my husband's case - he took something for quite a few weeks). The burning is often a sign of that.

I cannot imagine going through this treatment after watching my husband and others go through it but I would do everything to try to do so because there is a better life at the end of it. Are you getting a lot of support and help at home and from friends? Your "job" right now should be just to focus on yourself and getting through this. My husband was not able to do much of anything for many of the weeks of treatment and really relied on others to drive him, help him with his medications and peg. It was all he could do to put one foot in front of the other and get dressed and go through treatment for several weeks.

My thoughts are with you- Sophie


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
Sophie H. #98389 06-29-2009 11:31 AM
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Chiming in with Sophie I was on a maintenance dose of Diflucan for months during treatment. The thrush started when the Zerostomia (dry mouth) kicked in, at about mid treatment. Any change in the pH in your mouth can start it. At one point I was taking 400 mg/day.


Gary Allsebrook
***********************************
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)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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