Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#174731 12-02-2013 01:31 AM
Joined: Dec 2013
Posts: 6
maryh Offline OP
Member
OP Offline
Member

Joined: Dec 2013
Posts: 6
My mother who is 80 recently underwent surgery to remove half her tongue and half the floor of her mouth. 2 weeks later the surgeons informed us that she has hi grade cancer in her lower jaw. They gave her the option of either having reconstruction or Radiation. She opted for radiation because she didnt want to go thru another op. However I am worried for her due to her age. What can she expect from radiation and for me as her carer what can I do for her?


mjh
#177840 02-28-2014 01:22 AM
Joined: Dec 2013
Posts: 6
maryh Offline OP
Member
OP Offline
Member

Joined: Dec 2013
Posts: 6
Hi my mum who is 80 underwent a 11 1/2 hour surgery and had half her tongue removed and 1/2 the floor of her mouth. They reconstructed the floor of her mouth but not the tongue. She is now undergoing radiation on her jaw and neck. She has made it through 21 treatments with another 12 to go. She has been holding up quite well throughout it all. I would like to hear from anyone who has had this surgery and how they cope with it now
thank u Mary


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

Joined: Jun 2007
Posts: 10,507
Likes: 6
Mary, welcome to OCF! I am terribly sorry I missed your original post. It was in the middle of another members thread which is why t was missed. Ive fixed you all up now and have both your posts together in the best place for first posts. Now your posts will get some attention.

What you are describing is a major surgery! It will take your mother a full year to recover from something so invasive. There arent very many members who have had this extensive of a procedure. Mostly the members here have had partial or even total glossectomies for SCC of the tongue or base of tongue. Ive had had of my lower jaw removed so I can relate somewhat to what your mother is experiencing.

Since she is now in the midst of her radiation treatments, I would suggest you help her to focus on what is within her control... her intake. Does she have a feeding tube? Is she able to take anything by mouth?

Every single day she should be taking in at least 2500 calories and 48oz of water. More is even better. These are the bare minimums a patient needs while going thru treatments and for at least the first year of recovery. By ensuring your mother takes in these minimums will help her to have a much easier time. If water intake is difficult, ask the doc for a prescription to get her hydrated a few times per week at the chemo lab. Water intake is essential especially if getting chemo to flush it out of her kidneys.

Best wishes to both you and your mother. Again, Im very sorry your initial post was not answered!!! Thats very rare that any post is missed around here.


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
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Hi Mary, I'm so glad you found this great place to be, and what a great caregiver you are for your mother. It's so good that she is doing so well, having completed 21 treatments! Re her age, it's really just a number and health depends more on so many other factors that contribute to health and surviving - more so than age. So, make sure you keep Christine's suggestions in mind. Keeping records of what goes in to her body every day (and what comes out as well) will help to ensure she stays on track. When my son was recovering during radiation (at his young age), he was not always able to remember when and how much he took of meds or water so I had to make sure and write down everything and show him (he didn't always believe me!). This helps, too when you/she see the doctors and can answer their questions. Stay with us and let us know what's happening.


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.)



Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
Hi Mary:
With 21 down and 12 to go you are getting to the point where any side effects from the radiation will begin to be at their worst. They will continue to worsen through the rest of the treatments and will stick around for up to 7 weeks after treatment complete. I hate to be the bearer of this possibly bad news, but I figure you are better fore-armed than surprised later.

If pain is a problem you will want to make sure you have enough pain meds. Likewise if dry mouth is a problem you will want to have a solution on hand and available. Mucositis, rope saliva and thrush are other problems that can occur that you will have wanted to think about ahead of time. Maybe you will get lucky and these problems won't occur, but if they do, you were prepared.

How is your mother's psychological state? Is she maintaining a stiff upper lip or is she becoming depressed? Having cancer is bad enough, but all the treatment is also a big attack on your body and that double whammy can be a significant thing for some people.

You seem to be doing a great job as caregiver, keep coming back here when you need more info or if you just need a little psychological boost for yourself. Many people have gotten through this, with your help, she will too.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2013
Posts: 6
maryh Offline OP
Member
OP Offline
Member

Joined: Dec 2013
Posts: 6
Tony mum is now down to 9 more sessions and she is holding up pretty well for all that she is going thru. The docs told us that the radiation will keep burning for approx 3 more weeks after she finishes all her sessions. It just tears me apart to see her going thru it. She is sleeping a lot more due to the rads but she is also complaining of her lips being so sore and at times swollen that it makes it almost impossible for her to speak. She is also saying that her throat is very sore. We have bucket loads of meds to help her cope. I just wish it was all over so she can start her road to recovery.
@Anne Marie I pray for positive results the kind that your son has gotten.

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Mary - My son also had a lot of difficulty speaking because his mouth was so sore. He spoke in whispers and would get so frustrated with me when I didn't quite understand what what he was saying. I told him I had a hearing problem (not quite true) and he needed to be patient with me. We also developed a kind of sign language i.e. thumbs up or down for ok, shrug shoulders for "I don't know" and I would try to use questions or choices where he could hold up fingers for numbers or shake his head yes or now. Make sure you keep in touch with the Doctor and office staff re the soreness. They can recommend something to help if something stops working . My son used "Magic Mouthwash" which helped for a while and then he went to something similar that I got from the pharmacist and later on, he went back to the Magic Mouthwash. Anything your Mom takes needs to be checked out with the doctor to make sure it's ok for her. You mentioned the doctor saying the radiation would keep burning for approx 3 more weeks and that's exactly what happened with my son - the third week was the start of much improvement. My son slept a lot, and that worried me until I found out that it was normal and most survivors really need the sleep to recover but you can't let them sleep past the time when they have to take their meds. Things will get better, Mary - so hang in there and keep checking in here.


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.)



Joined: Dec 2013
Posts: 6
maryh Offline OP
Member
OP Offline
Member

Joined: Dec 2013
Posts: 6
@christine=mum does have a feeding tube but she still likes to drink water and black tea sometimes even green tea. I have told her that its important that she keeps the swallowing motion happening as much as she can. She amazes me with her strength even tho I can see that it does get her down. I am not getting any support from other family members which really drags me down but I keep up the good fight for mum. I do meditation sessions with her and have also had reiki done on her. I'm just praying that her strength sees her thru the next 9 sessions


mjh
Joined: Jul 2011
Posts: 945
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2011
Posts: 945
Hi, Mary
glad that your Mum is still drinking water and tea. Do you have a humidifier near her bed and also maybe near her favorite chair? It help my husband manage.
So sorry to hear that your family is being less than stellar - but we are rooting for you both. My husband didn't meditate, but I did - definitely was worth it.
Best wishes and hugs to you both from snowy Ohio across the world.
Maria


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.
Joined: Dec 2013
Posts: 6
maryh Offline OP
Member
OP Offline
Member

Joined: Dec 2013
Posts: 6
hi anne marie can u please tell me what type of things happen when the radiation sessions finally end as the oncology staff keep saying that the symptons will get worse for 2 weeks after. My darling mum is suffering enough and it kills me to think its going to worsen. Thanx Mary


mjh
Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5