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#74007 05-05-2008 02:19 AM
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I'm not in treatment yet, but it's getting closer. I have been reading about the fatigue from treatment, and this is scaring me. I already suffer from chronic illness that saps my energy so much I had to retire early. I can barely get to doctor appointments now, even before therapy begins. So now I'm scared about what state I'll be in after therapy starts.

I don't have any friends near me to help me. So I've looked into hiring caregivers. But I'm not sure I can afford this for the whole treatment and recovery. My father offered to help, but he is 90 years old and has a heart problem and doesn't live close. I would feel just awful if the stress from helping me hurt him.

Anyway, I'm trying the best I can to find help. But I'm already exhausted and it's hard.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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Andrew,
You really do need a caregiver. Perhaps you should consider calling the American Cancer Society in your local area and talk to someone about help...particularly later in treatment. I am sure they have helped people in the same situation as you and can suggest some resources.

Good luck and please don't try to tough this out by yourself...someone needs to watch over you particularly regarding nutrition and hydration.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Hi Andrew,

I know this is so difficult to deal with especially without a designated caregiver to lean on. Defintely contact the American Cancer Society for help. I have been exploring this as an option myself as a way to contribute and help others dealing with cancer.

What if you hired someone for just a few days a week to help you with errands and making meals to start out with and then take it form there? It may not be as expensive as you think.

You are in my thoughts. LOVE Kate


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
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Hi Andrew,

Another option is to consult with the Social Work department at the hospital where you are being treated. They may be able to help you find some assistance and may have a list of volunteers who can help. Your doctor/team should be able to help you connect with the social workers if you aren't sure how to do this.

Also, if any of your friends or family ever says "just let me know what I can do to help" - they MEAN it! The problem is you are going to have to ask for specific help from them, but go ahead and do it. It will make them feel good to know that they can truly help out by driving you to appointments, making meals (if you are able to eat solid food), cleaning up your home, watching pets, whatever. Make a big list of all the things that would be helpful, and the next time someone asks "what can I do?" just hand them the list and ask them to pick something that would work for them.

Best of luck to you!

-Tricia


CG to spouse, tonsillar SCC, T2N0M0, tonsillectomy 9/06, 35 rad tx finished 12/06, no chemo. Positive PET 3/07 in tonsillar fossa (residual tumor), surgery 4/2/07 composite resection tonsillar fossa and BOT w/forearm graft and right ND.
trimatt #74021 05-05-2008 10:28 PM
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Thanks for the tips. I'll follow up on these.


Squamous cell carcinoma base of tongue. Lymph involvement unclear; staging placed at "2 or 3." Biopsy 4/18/2008. Treatment: IMRT every day for 7 weeks. Cisplaten once a week to sensitize cancer to radiation. Treatment ended 7/16/08. PET/CT shows no more cancer.
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Andrew - I know in our area in addition to all the great ideas above - several churches provide assistance. Even if you are not a member or an active attendee we have several churches here that provide money, meals, taxi service, house hold help, etc.

Don't be shy - ask EVERYBODY. There are tons of people in this world that really want to help people in a situation like you are dealing with. There's lots of crappy, cynical stuff going on in the world these days, but there are still good people out here!!

good luck to you


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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Bottom line is that the effects of the Tx are cumulative and will most likely take a huge tole on your body so please get assistance anyway you can.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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All of the above -very good advice. I would add to it to try to plan for all of this ahead of time. Take out an equity line of credit on your home if you can. I gave my wife power of attorney so she could pay the bills. In addition to the well known fatigue side effects, the pain meds will cause your mind to be pretty well scrambled as well. You will need a caregiver - start lining up your neighbors, coworkers, friends, relatives, church groups. etc., now.

"There is nothing to fear but fear itself" - We've all been there - you can do this - one day at a time.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #74315 05-13-2008 08:43 PM
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Andrew,

OK, this is bottom line. YOU will need some help!! I can not believe that you do not know someone that will be there for you.?

Right now you NEED Family, Friends, Neighbors that know you!! You will need big Support going through Treatment. You can also find support with Those that have gone through this. Check with the hospital for Volunteers!! Most of us that have gone thought this offer guidance for others.

Maybe someone here, may live close to you and can be of some help.

I am thinking of you... Hope this was of some help!!
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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Andrew, I can really relate to your situation. I took care of my husband for years due to his emphysema and he recently passed. Now I have been taking care of my Mother as she is legally blind, now I have been diagnosed with what appears to be cancer and don't have anyone to help me either. My mother is 81 and in better health than me. I am 55. I know that the hospital you go to will have very educated people in there to help you with every aspect of your aftercare. They will help you to get everything situated so don't worry and put all your energy into recovering. My thoughts are with you. Angel


SCC left tonsil, tonsillectomy with additional tissue removed 06/10/08, a few teeth on top left side removed 09/05/08,recurrence before treatment started at BOT and tonsil area, 35 IMRT treatments began 10/15/08, and Cisplatin IV (began10/16/08) weekly for duration of radiation.
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