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#159718 01-05-2013 07:15 AM
Joined: Nov 2012
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katira Offline OP
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Good day for all, I hope. I posted previously but jumped in at the wrong place. I was gently redirected and here I am. I'm caregiver to my fiance who finished TX on December 31,2012. I know we're not finished with "this" but I really like the symbolisim of completeing rad on the 31st. Chemo was completed two weeks previous.
Thank you to everyone involved on this site it has been informative, encouraging and has helped me to check in to reality when needed. I believe information is power and soak up everything I can regarding the topic at hand. My fiance is a bit of an ostrich when it comes to his health and prefers to take things as they come. I guess we balance out one another well.
Eric currently has a respiratory infection and is being treated with a 2nd round of antibiotics as the first didn't work for him. He had a blood transfusion one week ago and is now receiving Procrit injections (a total of three - two to go). We're eager to see how the treatement affected the cancer...is it gone, has it moved,etc. Thanks again for this site and I look forward to participating and supporting where I can. - Kat


Kat fiance/CG to:
Eric: age 57
DX 10/19/12, HPV16+ SCC stage IV lft tonsil, BOT
nonsmoker,casual drinker
TX 11/5/12 Cistplastin wkly x 7, IMRT x 35
PEG placed 11/9/12
ALL CLEAR PET SCAN - 4/16/13
PEG removed - 4/29/2013
Joined: Dec 2012
Posts: 26
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katira,
Your fiancee's situation is similar to mine. Mine was stage III with a single left side lymph node involved. Primary site at base of tongue (left lingual tonsil) Identical treatment. I am still after 2 1/2 moths 100% on the feeding tube. I feel like I can swallow but nothing goes down. I am doing some exercises but no improvment to date. Is your fiancee able to swallow yet.
Mr Mike


WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
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Welcome. Same type of original cancer here, and similar problems with low blood. EPO's like procrit, epogen are controversial especially with active cancer, and blood transfusions are usually recommended instead, and fast acting in dangerous levels, but both have their risks, one with possible speeding up cancer, increase in tumor size, and latter, recurrence. If the anemia can be corrected with Iron, B12 or diet that is preferred also, if these deficiencies are the cause. Usually its due to the chemo, radiation suppressing bone marrow production, and may correct itself upon completion of treatment, and recovery. A transfusion or two is usually sufficient enough to bring the Hemoglobin to a satisfactory level...above 9 (up one point each trans) and hospitals usually do this until it gets to that level before discharge. Normal range for males is between 13.8 -18. One thing recommended, and is protocol. is not to have an EPO injection when your Hemoglobin is above 12, and my local oncologist does not give it when mine reaches above 10 to reduce these risks. My last treatment oncologist does not give EPO injections, only blood transfusions, and my local oncologist, who I regularly see, agreed not to give any injections during my treatments or when a tumor is possibly active. Anyway, both help with your QOL, and anemia can cause chemo and radio resistance, so it's a difficult choice. Good luck with everything.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Nov 2012
Posts: 17
katira Offline OP
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Posts: 17
Hi Mr Mike,
I'm sorry to hear about your difficulty in swallowing. Eric has managed to swallow each day since diagnosis, even if it's been just a mouthful of water. He's using his PEG 100% for nourishment but he had a mighty craving for cashews that wouldn't go away. He managed to chew up and eat a few but a piece got caught in a mouth sore and caused some discomfort so he hasn't tried anything but apple juice since. His nausea is still fairly significant. He is doing some of the exercises, like stretching his mouth open in hopes of preventing his jaw from locking up. I hope you see some improvement soon. Good luck! - k


Kat fiance/CG to:
Eric: age 57
DX 10/19/12, HPV16+ SCC stage IV lft tonsil, BOT
nonsmoker,casual drinker
TX 11/5/12 Cistplastin wkly x 7, IMRT x 35
PEG placed 11/9/12
ALL CLEAR PET SCAN - 4/16/13
PEG removed - 4/29/2013
Joined: Nov 2012
Posts: 17
katira Offline OP
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Joined: Nov 2012
Posts: 17
Hi PaulB, thank you for the welcome. I have concerns regarding the Procrit injections since we don't know how his tumour has responded to the treatements. His Hemoglobin dropped from 11.4 to 6.5 within a week's time so the dr prescribed the transfusion which raised it up to 9.4. It's so difficult to know what direction to go. Eric has also received B12 twice but it hasn't helped him much beyond the first couple of hours.I'll post how he is doing and if we can determine how the Procrit helped or hindered his treatment. Thank you for the input! -k


Kat fiance/CG to:
Eric: age 57
DX 10/19/12, HPV16+ SCC stage IV lft tonsil, BOT
nonsmoker,casual drinker
TX 11/5/12 Cistplastin wkly x 7, IMRT x 35
PEG placed 11/9/12
ALL CLEAR PET SCAN - 4/16/13
PEG removed - 4/29/2013
Joined: Jun 2007
Posts: 10,507
Likes: 7
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
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Katira, usually the first 2 or 3 weeks after finishing rads is the worst of the whole thing. Radiation continues to work even when its finished. Right about the 2 or 3 week point after finishing is when most of us began to feel like we were in recovery mode. the whole thing is such a long road! A full recovery can take up to 2 years but really after about 3 months post rads most patients are doing much better. From about 3 weeks post rads, the patient should begin to have more good days than bad.

Ive had the procrit shots and they have helped me tremendously. After going thru so much it takes a newly recovering patient a little longer for improvements to kick in.

Hang in there, it will get much easier very 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

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