Patient / Survivor Header
Page 2 of 3 < 1 2 3 >
Topic Options
#121256 - 09/03/10 03:49 PM Re: Caregivers need to take care of themselves als [Re: Charm2017]
Amylea Offline
Member

Registered: 09/02/10
Posts: 3
Loc: Maryland, USA
I am the daughter of an oral cancer patient. Our family made it through the squamous cell carcinoma of his jaw and the radiation treatment. Then the return of the cancer and the removal of part of the lower jaw and 7 teeth. Now we all face the return of the cancer in the tongue. The surgery is scheduled for 9/23/10. My mom and I are the caregivers with some support from children and grandchildren. This one is terrifying to both of us.I just joined the support group and will be inviting my mom to join also. We need support in the form of information. How long before dad can communicate? How long until he eats? Will the G-tube ever come out? Mom just bought him an I-Pad to help with the communication.Any words of wisdom for us?

Top
#121258 - 09/03/10 04:51 PM Re: Caregivers need to take care of themselves als [Re: Amylea]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7935
Loc: PA
Amylea, welcome to OCF. Please start a new post so that this will get the attention it deserves. Most new members post under the heading of 'introduce yourself'.

The questions you are asking are ones that we cant answer. If your father had a mandibulectomy then it is a long road to recovery. Its not an easy operation to get thru, I speak from experience. With already having radiation, he has gone thru so much already. If he is now facing a recurrance and part of his tongue will be removed, then it will be another long recovery. If your father is a 3 time oral cancer patient, be prepared for a long road. Ive gone thru this 3 times and each time it took me longer to recover. Cancer wears a body down.

Do you know how much of the tongue will be removed? Is the doctor making a free flap?

The G tube will be determined by how well your father is able to eat and sustain himself. Its usually ok to be removed after he can maintain his weight for 2 months without using the tube. For now, he will depend on the tube for a while until he is able to eat again. Eating is up to him and if he is able to chew and swallow. He may need a swallowing test to make sure he is able to get food down into the stomach and not into his lungs. This cant be rushed.

Best of luck to your dad.
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#121282 - 09/04/10 05:16 AM Re: Caregivers need to take care of themselves als [Re: ChristineB]
penners Offline
Senior Member (100+ posts)

Registered: 05/27/10
Posts: 135
Loc: North Carolina
Hello Amylea... welcome to OCF but sorry you and your father are having to deal with this awful disease. This forum helped me so much be a better support person to my aunt. (my closest living relative). Bless you.

D
_________________________
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.

Top
#121294 - 09/04/10 02:04 PM Re: Caregivers need to take care of themselves als [Re: penners]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2504
Loc: TN
Hi Amylea - So glad you found this site. There is a wealth of information available and some very caring, compassionate and practical help. I don't know what I would have done without OCF when my son was going thru the most difficult time of his recovery. It's good that you have your Mom to share the caregiving and the support of children and grandchildren. Please let us know what happens.
_________________________
Anne-Marie
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.)




Top
#121398 - 09/06/10 09:39 PM Re: Caregivers need to take care of themselves als [Re: ChristineB]
Amylea Offline
Member

Registered: 09/02/10
Posts: 3
Loc: Maryland, USA
Thanks for the response. Dad is getting really down. Hes having so much trouble swallowing and is in pain if he puts in the teeth made for him after the other surgery. So eating is limited to very soft foods and soup.
We have a big meeting with the medical team on the 13th. I wish there was an alternative treatment.The PET scan will tell us how much of the tongue is being removed.Very sad time for my family. My dad has suffered so much already.

Top
#121409 - 09/07/10 03:18 AM Re: Caregivers need to take care of themselves als [Re: Amylea]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 7935
Loc: PA
Amylea, here is a list of easy foods for your dad. Ive been thru the mandibulectomy and know how bad it is. The recovery is such a long process. Trying to eat without teeth isnt easy. Unfortunately, I had my teeth removed due to problems from radiation. I eat lots of soup, yogurt, applesauce and tapioca pudding with whipped cream.

Its very important that your father gets at least 48oz water and 2500+ calories per day. Fighting cancer requires extra calories so for now the more the better. With the feeding tube, he should be using prescription formula. For extra calories, many here including myself have used Carnation VHC. Its 560 calories per can, a little thick so I add a can of water and use the overnight feeding pump.

Some patients struggle with depression and take anxiety medication. Its very common for cancer patients to need medication in order to deal with what is happening to them. Most cancer centers have a special therapist patients can talk to. Make sure you put this on your list of questions for the 13th meeting.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621
_________________________
Christine

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 rad end 9/27/07, no caregiver
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
total of 185 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 hospital extended 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

Top
#121553 - 09/09/10 03:35 PM Re: Caregivers need to take care of themselves also [Re: Elianne]
malo5 Offline
"OCF Down Under"
Contributing Member (25+ posts)

Registered: 09/02/10
Posts: 34
Loc: qld,australia
I just want too say that an integral part of my recovery 2yrs after treatment was and still is my partner and caregiver there is no words that can describe what she means to me.
I thought meeting her was enough wrong,she bore my four children still not enough,then the fight with cancer she was there through thick and thin there is something i can say thank you my love for being there even when i made you sick from chemo thank you.Oh by the way her name is michelle and she is a real angel just like all caregivers are.




2yrs post treatment
throat cancer
7 weeks rad
3 chemo
back teeth out both sides
peg in/peg out
reg check-ups
so far so good

Top
#124632 - 11/15/10 11:26 AM Re: Caregivers need to take care of themselves also [Re: Charm2017]
Jeanna F Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 08/19/09
Posts: 207
Loc: Melbourne, Australia
Hey Frank....I'm a disappointment to me.....and hubby & ma & pa....reality hit me in August....28 Xanax....Rod called the ambos....still here...I'm a shit....was sooooo tired, 28 not enough.
_________________________
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.

Top
#124633 - 11/15/10 11:27 AM Re: Caregivers need to take care of themselves also [Re: Jeanna F]
Jeanna F Offline
"OCF Down Under"
Gold Member (200+ posts)

Registered: 08/19/09
Posts: 207
Loc: Melbourne, Australia
guilt worse......
_________________________
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.

Top
#124783 - 11/17/10 05:52 PM Re: Caregivers need to take care of themselves also [Re: Coping in Texas]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
I can SO relate to this.. i get that "life sucks and then you die" attitude from Matt too. Perhaps it's that we are the ones close enough to lash out at. In the line of fire and all...
It's complete bs though. I told Matt a few weeks ago, when we were discussing insurance needs and what will be taken care of after... he's giving his kids the majority... and they haven't done a darn thing for him through this. I am the ONLY one here and taking care of his ass every day.
I feel SO unappreciated and used. I need to start counseling for myself (he wont go) but I haven't the time... I must work full time, take care of the house, our 12 y/o, my second business from home... taking care of 'me' just doesn't seem possible sometimes. I just take another anti-depressant and keep going on auto pilot, praying it will all be over someday
_________________________
CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

Top
Page 2 of 3 < 1 2 3 >


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
1 registered (Bart), 35 Guests and 3 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
9740 Members
23 Forums
15552 Topics
176583 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8035
ChristineB 7935
EzJim 5260
Brian Hill 4637
Cheryld 4593
April
M Tu W Th F Sa Su
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
Newest Members
Heike, martie_2014, bfbf, Keleigh, lssiii
9740 Registered Users