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#147032 - 03/11/12 02:51 AM Re: Radiation worries. In need of some major advice [Re: Charm2017]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
Thank you all. I will be going thru radiation you all helped me get their this. I don't know if in the coming months I'll be able to come on here as often so if you'd like keep in touch, please send me a PM. I would appreciate anything while I'm down and out. You have all helped me so much. I'd love a pen pal.


Edited by ChristineB (03/11/12 05:27 AM)
Edit Reason: removed full name and address
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#147098 - 03/14/12 02:33 AM Re: Radiation worries. In need of some major advice [Re: John of arc]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
I will have radiation for 7 weeks 5 days a week.
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#147101 - 03/14/12 04:40 AM Re: Radiation worries. In need of some major advice [Re: John of arc]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8390
Loc: PA
John, I wish you all the very best with your upcoming radiation treatments! I know its not easy but keep up with a minimum of 2500 calories and 48 oz of water every single day. This will help you to get thru your treatments easier. While you are waiting to begin, try your best to eat everything you can as yoiru sensse of taste will temporarily change. You will also want to get your hearing tested, your teeth checked and flouride trays made. Another thing to do is to get a complete blood test including thyroid. Dont worry! We will walk you thru the whole thing and be here evry step of the way to support you.

Best wishes!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147110 - 03/14/12 04:49 PM Re: Radiation worries. In need of some major advice [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4895
Loc: Toronto canada
Hi John that's pretty average for rads. Christine is right enjoy your foods now, bulk up, and all the other stuff. They will take you in to make a mask don't freak, they actually bolt you to the table... Just giving you the heads up. If you're claustrophobic you might need anti anxiety meds. They may also offer you a feeding tube. Don't put off rads too long... Hopefully it will happen ASAP. Hugs and take care.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#147112 - 03/14/12 05:14 PM Re: Radiation worries. In need of some major advice [Re: Cheryld]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
John

Not bad at all, my first round was 8 weeks for 40 radiation TX.
URGENT: get a TSH blood test NOW before the radiation hits. The hospital can do it very easily since they are taking blood work all the time. You need the actual TSH number and a copy of the blood test. There is controversy over what is the right TSH level with labs having a 5.5 or a 4.5 as okay even though endocrinologists who went to Medical school the 21st Century conbsider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back . Without my pre radiation blood test for TSH, I would not have been able to get the TX I needed.
Charm
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#147127 - 03/14/12 11:40 PM Re: Radiation worries. In need of some major advice [Re: Charm2017]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hey Charm
I don't understand the whole TSh thing. I know it is for thyroid, but as far as I know they never checked Kevin's. Maybe they did and we just never talked about it. I know this ignorance on my part, but why is it important to know a starting number?
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

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#147128 - 03/15/12 12:19 AM Re: Radiation worries. In need of some major advice [Re: KP5]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Kathy

It is not ignorance. I had to drop my MO and get a young endocrinologist who went to medical school in the 21st century before I could get the TX I needed. First, radiation today is designed to minimize harm to the thryoid so that is what the doctors assume since it does not happen to everyone. Remember that I had two rounds of radiation. But the basic principle is that your TSH level should be the same after the radiation as it was before the radiation. Unfortunately some doctors believe that it doesn't matter as long as the TSH level is "within the normal range".
What is even worse is that there is controversy over what is the right TSH level with the labs having a 5.5 or a 4.5 as okay on their result sheets even though all the professional associations of endocrinologists conbsider 3.0 as the highest acceptable level. Then I found an old blood test that luckily had my pre radiation TSH level which my new doctor agreed should be my level again. (Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. )

While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results.

Of course there could also be nothing wrong at all with Kevin's thyroid . But it worked for me.


Edited by Charm2017 (03/15/12 12:22 AM)
Edit Reason: typos
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#147635 - 03/31/12 03:09 PM Re: Radiation worries. In need of some major advice [Re: Charm2017]
John of arc Offline
Senior Member (100+ posts)

Registered: 02/18/12
Posts: 117
Loc: New York
Kind of had a break down this morning. Im not normally the type to get angry or yell but this morning it all came to a boil and unfortunately my mom caught the brunt of it and I don't know what to do.
I feel guilty because it felt good. It feels like I just exercised and have calming endorphins running thru my body.
It was the dentist that finally made me snap. I had to go to the dentist to get checked out because I won't be able to have dental work done for 18 months after I complete radiation. I wasn't expecting anything and once again was shocked beyond belief. I had 12 cavities in between my teeth and had to have them all filled in the matter of 2 days. And the dentist kept referring to radiation side effects as if they were items on a grocery list. Like losing my taste for a while was totally fine and ok and she kept insisting I'd have no spit ever again even though I told her multiple times the Oncologist said I would have spit. And it was like she, albeit not maliciously or knowingly, kept taking my last shred of hope and throwing out the window.
And this morning I just raged like a wounded beast. I didn't realize how angry I was and how scares I am and how sad I am and how hard I've been suppressing everything so I can carry on. But it all came out. And I doubt seriously that my mother will be speaking to me again or coming with me to further appointments.
I just want to disappear. Some days I get up and wonder what I am fighting for. I'll be left with the shards and pieces of the life I had and will be forced to pick away at the normal everyday creature comforts until I become a slave to my mouth. And I can't honestly say this is the life I want. How much more can I take? How many mOre simple things can be ripped away before I just give up. And how long before people stop wanting to play with the broken doll I've become?
_________________________
Taking a break from the forum for a while. Thank you so much for your support if you've been supportive.

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#147636 - 03/31/12 03:29 PM Re: Radiation worries. In need of some major advice [Re: John of arc]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8390
Loc: PA
So sorry you had a dentist with not common sense. I find it just horrible that they could be so thoughtless giving you all kinds of medical advice when it is not anything they would even be treating you for. Do not let one person who doesnt think before they open their mouth get you upset. Just consider the source of all that bad info. I get amazed at the ignorance of some 'professionals'!

Truth is everyone is different. If you have saliva problems down the road, then there are meds that can help. After doing radiation, you can have dental work done. You will just need to do the Marx Protocol which is 20 hyperbaric oxygen treatments (HBO) before having extractions and 10 after. Ive done them and its no big deal at all, just time consuming. If you need to have a tooth filled, you do not need HBO.

Im certain your mother understands what was the underlying cause of your distress. Moms just know. It sound to me like you have been holding so much inside that you burst. Many OC patients see a therapist and also many take anxiety meds. Even caregivers can end up needing help to deal with facing the cancer of a loved one. So if you feel like its too much for you then I would suggest you seek out some help. Dont ever forget we are here to lean on too. This forum is made up of the most kind people anywhere in the world. Its ok to come here to vent if you feel the need. Anger is part of the grieving process. It may sound silly but we all go thru this in various degrees. We all grieve the person we used to be.

Hang in there, you really will get past this rough period in your life. ((((HUGS)))) to you.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#147652 - 04/01/12 01:27 AM Re: Radiation worries. In need of some major advice [Re: ChristineB]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2594
Loc: TN
Oh my goodness! What an absolutely insensitive, unthinking person to have talked to you that way!! And good for you, John, for speaking your mind. The fact that you felt good afterwards means you were able to relieve a lot of stress that had been building up. Is that dentist associated with other dentists in the same office? Would it be possible to see a different one? Stress is the last thing you need right now so maybe if you let your doctor know how you are feeling, he/she can make some suggestions re meds or seeing a different dentist. Christine is right about your Mom understanding your outburst. My son had a rough time of it, too but we both got thru it and he is doing just great, now! I'm sure your Mom worries about you and if you think it would help, you could suggest she come on OCF, too for some support in getting thru the rough parts of helping you through this. It is such a rough road you are on but it will get better. Keep coming back here. There is always someone here to listen and a soft shoulder to lean on. Let us know what's happening with you.
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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