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#140962 10-02-2011 08:05 PM
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Well, hi! Sorry, I know it's been a while.

I was cruising along with treatments, thinking, okay, this isn't as bad as I was expecting. I've lost my voice completely and my sense of taste is gone too (everything tastes like salt water.) The pain in my throat was intense, but they gave me a Fentynal patch and Lortab for breakthrough pain. I have Muguard and Triplex oral meds for the mucositis (I also have Cetacain spray, which has been a Godsend.)

I got my chemo on September 21 (Wednesday) and started having diarrhea and vomiting the next day. By Sunday I hadn't been able to keep anything down for 4 days, including sips of Pedialyte....even the thought of food would start the retching and puking. The vomiting had become pretty much nonstop. Monday morning I called my bff and asked her to take me to the E.R. My electrolytes were so off that I was listed as critical. I'm also anemic and neutropenic. I was having horrible muscle spasms, and Monday night I went into respiratory arrest. Needless to say, the next week in the hospital was a blur. They tried to put in a PEG tube, but apparently my gastric bypass from 10 years ago prevented them from being able to do so. I did get a PICC line.

I am still getting my electrolyte levels checked every other day, and getting IV electrolytes at my MO office. Haven't gotten any chemo since 9/21. I'm really worried that the nausea will return when my chemo resumes....and that I'll be back in the hospital. I had my final planned rad treatment this past Friday. I believe we will start my boost on Monday (could be wrong....I can't seem to remember things lately.) It seems that I only have enough energy to sleep and get to the hospital/RO/MO.

I get my bloodwork done in the a.m., to see if I need more Potassium, Calcium and Magnesium. I'm taking oral supplements and I did get Nupogen when in the hospital. My BUN and Creatinine are both elevated, so I hope that things will start showing some improvement....I'd like to get this treatment behind me.

Mom was diagnosed with bone mets. She started her radiation treatment while I was in the hospital, and finished last week. She's in a wheelchair now. God just doesn't want to stop with us, does He?

Trying to keep my chin up. My sister's anniversary is at the end of the month. Wish we could get some good news for a change.

kellijojo #140965 10-02-2011 10:58 PM
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Hi Kellijo,

I'm glad you posted an update. But, I wish it was going easier for you. It sounds like you are hitting the beast with the big guns. And, it's going to take its toll on you. Keep hanging in there.

Sending prayers and positive thoughts for you and your mom to have successful treatments and quick and uneventful healing.

Your sister's anniversary will mark the completion of a full year of what it has meant to your family to have lost her. There will be no more firsts of the annual events to have to endure. Time will never completely erase the pain. But, this is the start of it becoming a little less painful. I am so sorry for your loss. Your family deserves to have peace, happiness and good health.

Sending hugs, kisses, and lots of love and prayers,

Sandy
xoxox


Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
Sandy177 #141021 10-03-2011 06:20 PM
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Me too more prayers and positive thoughts for you and your mom. You've had a really rough time of it. But your dine rads so that's. Plus! Are they only giving you one more chemo? If so just dig in and get it over with. It won be fun but when it's done it's done. Hugs to you... You've gotten through it!! Hopefully you'll get good news coming up! You more than deserve it!


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 #141023 10-03-2011 07:59 PM
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Keep taking the nausea meds after you get the chemo. Ask the nurse or doc how long the chemo would cause nausea. Then take it according to their info. I wish you the best luck with finishing this up so you can put it all behind you. Keep up the good nutrition and hydration, it will help. Especially drinking extra water to flush the chemo out of your body.

When you have time please add a signature. It greatly helps us to know what you have gone thru when answering any questions. Click on the "My Stuff" tab, then on the drop down menu, click on "Profile". Scroll to the bottom and type in the white box, click "Submit".

Last edited by ChristineB; 10-03-2011 08:01 PM.

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 #145430 02-03-2012 06:49 PM
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Thought I'd post another update. Mom passed away November 18. She was holding Dad's hand, and just didn't take another breath. She was at home, and it was easy and painless. Dad was a wreck. His sister stayed a week with him, and then I stayed every night for a month or so. He's getting better. I still have dinner with him nearly every night. He's back to working out and going to his lunch club. I'm back to work, 1/2 days. I have been having horrible bouts of vertigo on my radiated side. It comes and goes. I just had a checkup with my ENT surgeon and MO. My electrolytes are back up to (very low) normal, finally. My creatinine is 1.3 and BUN 32, so my kidney function hasn't bounced back like I had hoped. I'm still boarderline anemic, even with all of the supplements. I have a CT in March and an appointment with my RO. My jaw seems more tender than usual, so of course I'm paranoid as hell. I'll update again when I see my RO. I know this sounds defeatist....but if this comes back, I'm not going through that again. Once was more than enough for me, thankyouverymuch.

kellijojo #145432 02-03-2012 08:51 PM
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Kelly - congrats on getting brought it and being there for your dad! Sorry about your mom, but thankfully it was peaceful. It's not an easy treatment - but you did it and hats worth a million kudos, and I sincerely hope it never comes back! Hugs!! And jaw tenderness is normal mine is too usuall a little massage helps! 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
kellijojo #145433 02-03-2012 08:53 PM
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Im very sorry to hear about the loss of your mother. Im sure it has been a very traumatic time for your family.

I hope you have no reason to be concerned. Recovery can be a long drawn out process with ups and downs along the way. It can be a full 2 years before your body has bounced back. I wish I had something that I knew would help you feel better. Know you arent alone in this. We are here to help when possible. Be well.


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 #145440 02-04-2012 10:30 AM
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Hi, Kellyjo
I see that you are in Michigan. This is a dreary time of year, especially when you have so much sadness, worry and pain. In our modern world, we feel the turn of the seasons less than our ancestors - unless we work at it a bit. Perhaps you can find comfort and strength in a walk in the spring snow (not a blizzard!) by yourself or with your dad. Our dog (who requires a walk, no matter the weather) was instrumental in my husband's healing from the cancer, and in my autoimmune issues. Gentle - or even not so gentle - activity in the out of doors can help you to feel better, and feeling better is good. Keeping your concentration on the beautiful clouds and the signs of spring can give you a mini-vacation from your troubles. Best wishes for health, healing and peace.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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