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#195619 01-22-2018 10:09 PM
Joined: Jan 2018
Posts: 1
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Joined: Jan 2018
Posts: 1
Hi there.

I'm 6 months past the end of chemo & am really bottoming out emotionally. This forum was recommended by someone with Friend for Life, with whom I spoke today. The fatigue & mental fogginess are quite challenging at this point. I'm finding it helpful to communicate with folks a little farther down the road than I am.

Squamous cell throat cancer diagnosed June 5, 2017. Metastasis to the lymph glands in left jaw. First PET scan appeared to show a different & unrelated cancer in my torso, in addition to the neck tumor. For 9 days I believed I had 2 cancers, and I was ready to pass GO and enroll directly into palliative care. Then the biopsy of my spleen showed I had sarcoidosis instead. I actually said out loud, "Great, I only have one cancer!" And not sarcastically.

Had a melanoma removed from my nose 4 years prior, so this was not my first CA diagnosis. Opted to work w/ Duke Cancer Center, about 200 miles east of home. I began treatment mid-July - 7 weeks of radiation treatment, with daily chemo (cisplatin) in weeks 1 & 5. Last radiation treatment Sept 1.

I apparently tolerated those 7 weeks pretty well medically - no stomach tube, good family support, very pleased with the care @ Duke. Continued to work on the weekends when I was home.

So check-ins with the radiation doc @ 2 months & 4 months were fine - NED.

But now @ 6 months I feel stuck. Taste & saliva production slipping backwards, fatigue & chemobrain really an issue with work. Very discouraged. Check in w/ chemo doc scheduled in 2 days - not worried about the physical part, but eager to get a better idea of recovery from the treatment.

62 year old male, Asheville NC. Lost 25 pounds in 2 months, but am mostly past the weird metabolism effects of that. Working in a gym with trainer 2-3 times / week.

So if you've been this way before: when did you begin to feel like you'd make it back? How long did it take you to have some energy & to think clearly? Some days I feel like I should take a disability retirement immediately, but really want to hold off on a decision like that until June, to give it a year. Don't know if I'll make it. I'm in therapy, and my psychiatrist upped my depression meds today. So I'm doing everything I can think of. What was your recovery like?

Thanks,

Rob

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Rod! Welcome to OCF! Thank you for taking the time to detail what you have been thru. It helps us to better help you when we know where you're coming from. Im so glad you have joined our family. We will do our best to help you with info and support.

Everything you described sounds to me like its pretty normal. I was told by my docs its one month of recovery for every week of rads. But... (theres always gotta be a but) it takes 2 years for your body to completely recover after going thru rads/chemo. I know it sounds like a long time but you have been thru the war and it takes time to rebuild your body. Your sense of taste is probably noticeably improved than when you first finished rads. When you are in recovery and plateau, it can be difficult to measure all your improvements since finishing rads. None of us OC patients/survivors can ever get our lives and bodies back into our former (pre-cancer) states. Recovery can be particularly difficult with the ups and downs and setbacks. Im so very sorry you were doing so well and have bottomed out with no noticeable improvements for a while. It can be so disheartening after everything you have been thru to go backwards. To be honest, depression is very prevalent among OC patients/survivors. Even caregivers can become depressed watching their loved one go thru treatments and recovery.

After my first round of OC, I was still not the best at 2 months post rads but I returned to my office job part time. My head was very foggy and I wasnt able to concentrate or remember enough to do my complex office job. I was given easier side jobs to do for at least 6 months before I returned to my regular job on part time hours for about a month to help ease me back into my regular routine. At this point I was still not doing the best with eating. I still needed my feeding tube to sustain myself.

Im not sure if you are aware... your body needs at least 2500 calories and 48-64 oz of water during treatments and at least the first year (even better to do this until 2 years) post rads. After what we go thru fighting both the cancer and trying to heal our bodies we need extra calories to aid in our recovery. I was taking in 5000 -7000 calories daily by drinking giant high protein chocolate peanut butter shakes and I was still fighting to keep weight on even at 6 months post rads.

One thing to understand about oral cancer (OC) is every single patient is different and will experience things in their own unique way. I know that doesnt help make you feel any better about your situation. I just want you to know that what one person experiences the next may have complete opposite results. Overall Ive seen and helped hundreds of patients over the years get thru treatments and recovery. Ive seen many patients go thru exactly what you described. We all tend to get down on ourselves and our situations when we dont make enough progress. Setback can be especially difficult to take mentally as we all secretly wonder if thats as good as we will ever get. Usually most improvements happen within the first 6 month post-rads. But... thats not to say you wont still see many more improvements even after you are 1 year post rads. Some members have reported jumps in their sense of taste even after 2 years post rads. These things can be influenced by all kinds of minor things we dont give a second thought to. Believe it or not, some vitamins can impede your recovery which is why any supplement needs to be ok'd by your doc before taking. The average person doesnt have the in-depth knowledge of how vitamins and minerals work when combined with rads, chemo, anti-nausea meds, etc.

Hang in there, the worst of all this is in your rear-view. We have been where you are and completely understand what you are going thru. Best wishes with continued improvements in your recovery!!! You'll get there, it just takes time.


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

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