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#157738 - 11/18/12 11:48 AM Time for recovery?
Tracey S Offline
Member

Registered: 11/13/12
Posts: 7
Loc: The Woodlands, TX
I'm interested in knowing typical times/symptoms for recovery following tongue resection and radiation therapy for cancer at the base of the tongue. My Dad is 85 and scheduled for surgery soon. My Mom is 80 and his primary care-give, with me as back-up. They still live on their own and are very independent. But this sounds like tough stuff to me. What should we expect? Should we hire extra help? We have no other family near by. Thanks in advance for your advice.
_________________________
Tracey S
Daughter/Caregiver of Father

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#157739 - 11/18/12 12:21 PM Re: Time for recovery? [Re: Tracey S]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2570
Loc: TN
Hi Tracey - I'm so glad you found us here! It is truly the best place for all the latest accurate information and helpful suggestions from people who have been where you are. If you could give us a little more information, it would help those with similar experiences to be better able to relate to you or your Dad's experience. It's a good idea to be at a Comprehensive Cancer Center where there is a team of doctors to come up with the best treatment and who have extensive experience in treating many cancer patients. The following links are to some of the best hospitals and there is probably one near you or your Dad and Mom:
http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/health/best-hospitals/cancer-hospital-rankings/
Until someone else joins in here, you could check out the search box - upper right of this page, or on the main OCF page. It would help if you could give us a little more information on your Dad's treatment experience so far. It's wonderful that you are helping your Mom with the caregiving. Caregiving is a huge job and any extra help is always a good idea. My son's cancer was Stage 2, under his tongue - SCC (Squamous Cell Cancer). His recovery from radiation was difficult but there are people who just sail right through with very little difficulty. And he is doing just fine, now almost 6 years later! Best wishes for everything to go really well with your Dad. Let us know what is 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.)




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#157741 - 11/18/12 01:17 PM Re: Time for recovery? [Re: Tracey S]
Tracey S Offline
Member

Registered: 11/13/12
Posts: 7
Loc: The Woodlands, TX
We are using MD Anderson. Dad's cancer is squamous cell and this will be the second time for treament, but the first time was 12 years ago - the folks were much younger. Also, I was living far away from them at the time and was only there for his surgery, not the weeks that followed. So, this question is really for me, what should I expect? I have questions like, should I plan on taking time off from work? Should I cancel some long term vacation plans that I have? Should I board my dogs so that I can be there for my Mom at a moment's notice? I feel like I'm just rambling here, should probably do some more searching on this site.
_________________________
Tracey S
Daughter/Caregiver of Father

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#157742 - 11/18/12 02:01 PM Re: Time for recovery? [Re: Tracey S]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi Tracey,
I don't think there is any way to really know about things like the dogs. It will be a rough road and will last a few months. Your mom will most likely need quite a bit of support. I do think it would be wise to take time off from work, if that is an option for you. At their age it will be hard on your mom to watch your dad. She will need as much support as she can get. But...you will need to take care of yourself too.
As for canceling a vacation...I guess it depends what long term means and whether or not you have anyone else to help them.
I hope tis helps a little bit. There are many unforeseens going into this. Everyone has their own journey. There are no absolutes!
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
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 10/2012

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#157784 - 11/19/12 03:19 PM Re: Time for recovery? [Re: Tracey S]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4804
Loc: Toronto canada
I would say you definitely want to be there as back up. I think your dad will get through it okay but he may need a lot of support. Depending on his overall health etc. it can be very be very painful. And of course there's a daily trip to the hospital, and drs appointments etc. plus the caregiver may have to push alot with foods and fluids etc. it may take its toll on your mom, the first few weeks should be okay but the last 6 will be hard. (this includes 2 weeks post treatment and radiation is cumulative and the two weeks after are generally the hardest. Md Anderson is a great hospital - best of luck to you.
_________________________
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

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#157788 - 11/19/12 05:12 PM Re: Time for recovery? [Re: Tracey S]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 860
Loc: Ohio
Tracy, how close are you to your folks? Geograhically, that is!
Maria


Edited by Maria (11/19/12 05:13 PM)
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#157809 - 11/20/12 04:53 AM Re: Time for recovery? [Re: Tracey S]
CubanKeith Offline
"OCF across the pond"
Contributing Member (25+ posts)

Registered: 04/28/12
Posts: 47
Loc: London UK
Tracy
there may be minutes notice moments, but this treatment is more a part time job, any and evrything you do will be greatly appreciated, and giving your Mum and Dads ages this will tire both of them out.
I think a lot of driving and support to hospital for visits. keeping a diary checking they know what is next listening to Doctors so you can help explain procedures, these are all ongoing every day support things. help with meds.
helping you dad eat but knowing he will get upset and angry at times, what you can eat on tuesday you cant eat on wednesday, it a difficult treatment that changes but old folks are strong.
maybe the dogs will cheer your dad up? If you need a break in the middle take one. This site is the place to ask questions good luck to you and yours.
i will always feel especially close to the people that stepped up to the plate for me.


Edited by CubanKeith (11/20/12 04:54 AM)
Edit Reason: spelling
_________________________
21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.

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#157820 - 11/20/12 09:48 AM Re: Time for recovery? [Re: Tracey S]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2570
Loc: TN
Keeping records is important especially when there are so many different things like meds to keep tract of. I had a spread sheet with the doctors' names and phone numbers, even the names of the office assistants in case they needed to be reached and name/phone# of the pharmacy where you get prescriptions. I had a spread sheet with two copies, one for me and one to tack up on my son's refrigerator so that if I wasn't there he could check off what he took and what time. As CubanK suggests, make sure to get some breaks for yourself. 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.)




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#157826 - 11/20/12 01:43 PM Re: Time for recovery? [Re: Tracey S]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8277
Loc: PA
Everyone responds differently to their treatments. From what you have written it sounds like your father will be going thru treatments and recovery for several months. Usually its 6 weeks between surgery and rads. Then rads will be another 6 - 8 weeks and recovery a few more weeks. Start to when he begins to feel better could be anywhere from 4 - 6 or 7 months. This mainly depends on him which nobody here can predict. But this guess is pretty accurate.

Call the American Cancer Society and ask for volunteer drivers to help take him to radiation treatments. Even if you get someone to drive twice a week it takes a bug burden off your shoulders for those 2 days a week. Anyone who offers to help, write their name and contact info down in a book, have your parents do the same. Now is not the time to be proud and refuse anyones offer to help. Tell anyone who offers that when the time comes you will let them know what they can do but all help is appreciated. Even if its to pick up or drop off prescriptions, pick up some groceries or do a load of laundry, its a help.

Best wishes!!
_________________________
Christine
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

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