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#51666 08-29-2006 03:50 AM
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hmt144 Offline OP
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HHello, my husband is 32 and just got diagnosed with tongue cancer which we found out after a neck dissection is in 3 of his lymph nodes. The doctors are now recommending chemo and radiation for six weeks. He will be starting his treatment in the next few weeks. What can I expect as his primary caregiver? What things can I do to make him feel once he starts his treatment? I want to give him as much support as I can with out making him feel guilty or upset at his situation. I am very scared of what he will have to go through and want to support him as much as possible. Thanks, Heidi

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Hi Heidi,

Weclome. A lot depends upon your husband and his attitude. You must give him the support he needs. he may feel guilty, he may not. You must be there for him. He will have some rough times. He has to be able to lean on you. I'm not sure what else to say , but you have to be very strong and resolute. One day at a time is an old adage, but rreally does apply here. With the treatment today, the two of you can beat this. A lot of people on this site have posted from Minneapolis. I assume your husband is in good hands.


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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Hello Heidi and welcome.
First thing, go to every Drs appt and take lots of notes because you will never remember everything they tell you .
Advise him to get a PEG /feeding tube, inserted before he starts his treatment.
Try and get him to "bulk up" now while he can still eat, he will lose weight.
There is information on every step through this process on the board..take the time to read it,it will be invaluable to you.
Please know you are not alone, there are people on here who have been through everything this rotten disease will throw at you.
We are here and we care.

Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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Hi, Heidi, Answer a few questions for us. Do you work outside the home? Do youall have kids? Do you have supportive family members in town? One of the tough 1st things for you to do is get yourself organized so that you can focus on helping him. That means being very realistic about how your time is parceled out now vs. when you become a caregiver. Chances are that you will assume most of his household responsibilities for a while, along with your own. You will need to be knowledgable about his health insurance, among many other things. Find the "Getting through it" posts here for alot of good information. and keep asking questions. There is lots of good help and good people on this forum to hold your hand. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Hi Heidi,

Some good points have been made, and Marcia added some really valuable things that you'll probably want to do. What I'll add is that you need to take care of yourself too. Physically and emotionally. It can be pretty difficult sometimes to watch someone go through treatment, and one tends to put all of their efforts into being an advocate, caregiver and an emotional support for the person going through treatment that sometimes you forget to keep an eye on yourself. You need to stay strong so that you can be strong for your husband. Just make sure you eat well, get some rest when possible and sometimes it helps to have someone you can talk to so that you have a sounding board to discuss what you guys are currently going through. I would have been lost without OCF. This is a great place with tremendous people who will be more than happy to help you. All my best to you and your husband. Please don't hesitate to email me if I can help.

Dave


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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Look at the thread "Can you help?" in the Caretaker forum. It includes responses to specific questions along the lines of those you are asking.

-- Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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to all you caregivers, may i "speak" for all of us careneeders. thank you, thank you, thank you. we would not be here if not for you. God bless all of you, please keep on doing what your doing, so we can keep on doing what we do. love ya's upstatesteve


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