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#141352 10-10-2011 01:40 PM
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Stage 4 cancer, Feb 15, 2011. had chemo and radiation which resulted in pneumonia and 2 other fungal diseases of the lung. The latest PET scan was clear and except for the lung infections I am moving forward. I lost 70 lbs. Before this I was extremely athletic, runner, weight lifter, etc. Now a pile of bones with skin. Pain in my joints keeps me down, but I'm alive.


charlie
charlie/cowboy #141353 10-10-2011 02:09 PM
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Welcome to OCF, Charlie! Congrats on finishing your treatments and becoming cancer free! Seems like we all suffer one way or another getting thru OC. You will bounce back, it just takes time. Next year this time you will be so much better than you are now. It can take up to 2 years for a patient to fully recover from treatments. I also miss my old life but I have settled into a new normal for me and it works ok. Hope you find your new normal soon.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #141363 10-10-2011 03:56 PM
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Charlie, congrats on the clear PET. Like Christine I'm confident that you'll get your equilibrium back plus most if not all of the weight you lost. Sometimes it's amazing how much recoup time our body needs. I hope you're able to get enough nutrition because sometimes the desire to eat kind of goes out the window along with feeling generally lousy. Things will get better.

Keep us posted. Thinking of you!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #141374 10-10-2011 07:21 PM
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Hey there and welcome! Congrats on getting through it. We've all been there pretty much. Once you begin to feel normal, you can get back to the athletics. The treatments ravage you, but if you were in good shape going into the whole thing you should hopefully fair well in your recovery. Try to get a good amount of protein and nutrients into you, and try walking outside a bit daily. Best of luck!

Last edited by Cheryld; 10-10-2011 07:22 PM.

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
Cheryld #141387 10-10-2011 11:57 PM
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Charlie,

First welcome to OCF, glad you found us, sorry you had to. I was athletic before treatment and also lost a total of 70lbs during the whole process. Where due to issues caused from the treatment I'll never be able to sustain the 210lbs I was before cancer, I've been able to gain 30 of it back and build a great physique. It just took time and figuring out the new normal of my body.

I answered your joint pain issue on your other post, I'm going to lay odds on the hypothyroidism as it is an extremely common issue post treatment and that is a often overlooked symptom. I also suggested getting your adrenals and testosterone levels checked. The hormones tend to go haywire after treatment and can cause issues and slow recovery so get them checked out as well.

Stress, pain meds, antidepressants and rads can all massively effect testosterone production in the body which will slow muscle recovery, getting that checked and addressed can help you get back up to speed a bit quicker.

Best of luck

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #141400 10-11-2011 07:30 AM
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Eric is right about putting on the lean body mass, when you are ready to work on coming back. You can't do it without a good balance of hormones. My testosterone when through the basement a couple of years after treatment. I started wearing a patch to get the levels back to norm. I thought this really strange, as my family jewels were pretty far from my head and neck radiation. But your pituitary gland gets at least some scatter radiation with IMRT and really gets nuked with XMT that I had. It is the master and commander gland that controls all of your other ones� Eric you should get an 8 AM adrenal gland cortisol test as well.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
charlie/cowboy #141401 10-11-2011 07:49 AM
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Charlie

I know the feeling. I went from running Marathons in 3:15 to 3:30 range, lifting my former body weight (177), doing kickboxing for an hour, then ab class and yoga to looking at a scarecrow in the mirror. I only lost 40 pounds the first time, but after the recurrence I was discharged from the hospital at 119 lbs.
Good news is that two and half years later, I'm 142 and lifting the same weights I used to before the cancer. For me the key was getting on thryoid medication - my TSH level had gone up from 1.6 before cancer to 4.3. Now one pill a day and I have the energy I lacked. I'd get that checked.
So between Eric, Brian and myself you can see that hormones are really the key here to recovery.
Keep the Faith
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
Brian Hill #141403 10-11-2011 08:00 AM
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I had one done 1 year post tx right after I had my thyroid first tested and right before the test that showed my testosterone levels at an abysmal 70ng/dl (looooww normal is 260ng/dl). We were trying to find the cause of the crushing fatigue I'd been experiencing and adrenal malfunction was a thought.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #141410 10-11-2011 08:36 AM
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You know I wrote all this down for Ron's Doc when he goes next month. I'm going to run this all past Ron and see what he says, if he don't want to ask it all I'll call the Doc myself to let him know if we can get that all checked out for him too. He's eating but still a scarecrow, no muscle at all...even though he does everything outside yard work and up and down the stairs all day long, his leg he just had done for the second surgery is hurting him but it's only been 4 mo's but he even says this one is taking longer to heal than the other leg did the first surgery. Thanks for the new info I can use!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed

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