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#146355 - 02/24/12 08:31 AM Newbie around the corner
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
Hi All

Just joined this great group, hoping to cope being a CG to someone we loved. Its a great deal for us to show our positive sides to the affected one even we are falling apart ourselves,hands being tied couldn't share the pain they are going through.

I hope I can get some motivation, inspiration going through this.

CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

#146360 - 02/24/12 01:54 PM Re: Newbie around the corner [Re: ALZ]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
There are so so many caring hearts and well-informed members on this site! They have gotten me through the initial shock and anxious moments. I've come back in today -- end of week four -- and will seek information that will help me manage and prepare for the next few weeks. It's getting tough, but these guys have done it and they know what it takes. I feel very supported here both emotionally and with proper information. You have definitely found a great place for an awful event!

Being a caregiver is tough. It's part of what has me here today but you will find several caring hearts from that perspective as well. I promise you, you will get through it! I am weak and very tender-hearted but am beginning to see the light at the end.

Blessings, hugs and strength to you and your loved one!
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

#146363 - 02/24/12 03:16 PM Re: Newbie around the corner [Re: SoldierWife]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9427
Loc: PA
ALZ, welcome to OCF. There are many caregivers here who can offer you guidance. One thing important is to make some time for yourself every single day. You have so much going on and you need some alone time just to recharge. Take a walk around the block to help clear your head. It takes a very special person to be a caregiver.
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

#146370 - 02/24/12 06:40 PM Re: Newbie around the corner [Re: ChristineB]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
We would be lost without our caregivers. Welcome, ALZ. Please be good to yourself. I wish the best possible outcome and road to recovery for you and your loved one.

37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

#146371 - 02/24/12 07:08 PM Re: Newbie around the corner [Re: Kerri]
SUEZ Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/21/10
Posts: 531
Welcome and sorry you had to find us but we are here!!! OCF helped me get thru the rough spots also. It's just like life if you have a loved one ill, it's just another day, it is always "one day at a time" and that is how I live by that, don't think bout what tomorrow will be like, live with what today has brought. Good Luck and read postings and it will help!
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

#146373 - 02/25/12 12:07 AM Re: Newbie around the corner [Re: ALZ]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
You are definitely at the right place. I didn't find the site until the end of our radiation. By then it was just awful and I needed to know that was normal. It was and I was so relieved. It was very hard to watch Kevin go through it, but just knowing it WOULD get better made it easier to endure.
The hardest weeks are the last one of radiation and the next few after you're finished. I have posted before that one of the things that surprised us was how bad the burns were on the outside of Kevin's neck. The entire right side was just raw. We treated it a couple times a day with Silvadene cream and within 10 days or so the majority was healed. We bandaged it and put a wrap around to hold the bandage on because tape was right out. The wrap was given to us by the RO nurse. It made it easier to wear shirts because it kept them from rubbing.
Not sure what he is eating, but scrambled eggs and Ensure were an every day occurence. There were a couple of days when nothing would go down so he used the Peg a bit, but he really hated it so pushed himself to drink the Ensure. He would take pain meds and drink quickly. The Lortab worked fast so was ideal for eating.
There were so many days I would get in the shower and cry. It seemed all my good friends just disappeared when we were diagnosed so it was a lonely place. His family was somewhat supportive, but only wanted to hear the happy things so I couldn't vent there. Our MO and RO nurses were a wonderful support as well as the social worker at our center. They just let me weep or gripe or whatever with no judgement. That's what we need. A soft place to fall.
Then I met everyone on here and it was such a HUGE relief!!
We are here for you. Please know we understand. Kevin and I just completed tx at the end of October, so it's pretty fresh.
Blessings to you on the rest of your journey.

Edited by KP5 (02/25/12 12:12 AM)
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
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 10/12 and 10/13 and ct in 6/14

#146416 - 02/26/12 10:25 AM Re: Newbie around the corner [Re: KP5]
ALZ Offline
Contributing Member (25+ posts)

Registered: 02/24/12
Posts: 34
Loc: KL,Malaysia
First of all i am really touched and glad to see the welcome notes! It made me smile n feeling warm to know theres actually people who really cares!
Me and my 14 years partner went through hell since July last year. As we are young and dont really know how to handle this kinda situation but i am proud enough to say i brought her through the worst phase of the treatment. And myself as well ofcourse. Never know all my 30 years of life that this is the most toughest battle anyone could be in.
As being this young, i need to show the doctors that hey im not a kid but i know stuff too. So i did a lot of readings n research everytime we need to see doctor.
Sometimes the emotion is too overwhelmed.. Ending up i took one tablet of xanax which supposedly belonged to my partner. But it helped! Wont do it again tho. Having this great support group now, makes me relief n knowing i am not alone!

Love u guys
CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins

#146417 - 02/26/12 11:03 AM Re: Newbie around the corner [Re: ALZ]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Hi Al - I am so-o-o glad you found us! It's the best place to be for the latest information, research, and good practical suggestions from people who have been where you are! I found OCF just after my son started radiation 5 years ago and he is doing just great now! Check out the information on the main page and come back here often. When you get a chance, you might give us a little more information about your partner and include it in your signature line (see mine below). To do that just go to the top of this page where it says "My Stuff" -click on "Profile" and scroll down to the very bottom of the page. In the signature box, include whatever you like re your partner's treatment. There is a thread on the main OCF page for abbreviations or you can go to:
for an alphabetized list of abbreviations i put together from the ones I found on this site. Come back here often and let us know what is happening.
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.)

#146428 - 02/26/12 04:24 PM Re: Newbie around the corner [Re: Anne-Marie]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
Hello and welcome... It's a great group here with a massive amount of combined experience - sorry you have to be here but we're here to listen, support and inform. 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

#146434 - 02/26/12 06:12 PM Re: Newbie around the corner [Re: Cheryld]
zengalib Offline
Platinum Member (300+ posts)

Registered: 11/30/09
Posts: 493
Loc: NW Ohio
All I can do is say the same thing others have been saying-welcome and glad you found us. This is the greatest group of people that you can imagine. You caregivers are very special.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.

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