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#148976 - 05/02/12 07:40 PM Emotions
amylynn Offline

Registered: 05/02/12
Posts: 11
Loc: Ohio
My father is currently battling Oral Caner. He was diagnosed last April, he had surgery plus radiation and chemo last year. Then in December he started to not feel so well. They kept telling him he had an infection. It turns out that it was the cancer that had come back. I am so angry at them for not checking him to see if the cancer was back. He now has a trach in and is bed ridden going through physical therapy and chemo. My heart aches for him every time I see him but I put a smile on my face so he cant see my pain. I wish I could take this away from him and everyone else who has it. I am just feeling so many different emotions at one time.

#148977 - 05/02/12 07:44 PM Re: Emotions [Re: amylynn]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho

Welcome to OCF, glad you found us my new friend, sorry you had to.

Where is your father being treated? If you could take a moment and fill us in on the details (whatever you know) about his cancer, like primary location, stage, metastisis if any etc...the more information we have the more we can help smile

Keep your chin up, draw strength and support from the amazing caregivers on these forums (angels of mercy), the more you plug into these forums, the more we can help.

Strength in numbers

Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

#148978 - 05/02/12 07:53 PM Re: Emotions [Re: EricS]
amylynn Offline

Registered: 05/02/12
Posts: 11
Loc: Ohio
Hi Eric,

My father was diagnosed in April 2011. It started out as a spot on his tongue. When it kept getting bigger they did a biopsy and found out it was cancer. Then in July 2011 he had surgery, the doctor was confident that he got it all. Once the surgery was completed he then had to go in for radiation and chemo as a precaution. Then in December 2011 he started feeling sick like he just could not get better. Then in January he went into the ER and they found that the cancer had come back. The doctors were in shock because it came back so quickly. At that time they gave him two months to live. In the meantime an oncologist came in and said he had a chemo he wanted to try. When he went in for a follow up scan there had been no change in the cancer. My father went home that day only to turn around and go back to the ER because he felt something was not right. They admitted him. Two days later he was having trouble breathing. The tumor was growing over his airway. They tubed him and now he has a trach in. The newest chemo is not really working either. Since all of this the cancer has moved into his lungs and bones.

Thank you for taking the time to reply to me.

#148981 - 05/02/12 08:42 PM Re: Emotions [Re: amylynn]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
Hi, Amy Lynn
what a difficult time for you both. Where is your father now? Are you near or far from him? Any other relatives to help?
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.

#148994 - 05/02/12 11:52 PM Re: Emotions [Re: Maria]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
I'm sorry to hear about all of this - I know you said he's had surgery but often times some cells can be lurking in the lymph nodes, a cancer that comes back that quickly was never gone and frankly, it does sound as though it is very aggressive. If you're at a cancer center - ccc see if there's a clinical trial they can get him into. Hugs and take care.
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

#148999 - 05/03/12 01:17 AM Re: Emotions [Re: Cheryld]
amylynn Offline

Registered: 05/02/12
Posts: 11
Loc: Ohio
Thank you Maria and Cheryl. He is actually getting care through Kettering Medical Center. I just found out today that he will be getting three more treatments and then they will do a scan. It is just weird how quickly this cancer has spread. I am so afraid that I am going to lose him soon. I do not know how to deal with these feelings.

#149000 - 05/03/12 01:27 AM Re: Emotions [Re: amylynn]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 805
Loc: NY
Hi Amylynn,
I am so sorry for all you are going through. We went through a lot before we finally had a diagnosis. It can be amazingly frustrating.
As for maybe losing your dad... I don't know that there are any words we can give you to help sort your feelings as we are not in your shoes, but I can tell you that we are with you every step of the way. You can vent to us and we are here to listen and help with moral support at least.
If you go under the caregiver forum you will see posts from cmoore. This is Christine. She has just recently lost her husband Matt and may be a good resource for you. She's a lovely lady who stays in touch with us and I know she would not mind hearing from you. Just click on her name and then the personal message (pm) and say hello and what you are going through.
Keep in touch. Praying for strength for you. Our job as caregiver is a mighty difficult one because we are battling so many emotions all the while keeping a smile on our face. I used to cry in the shower!!! It was my only alone time.

Edited by KP5 (05/03/12 01:28 AM)
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
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 10/12 and 10/13 and ct in 6/14

#149004 - 05/03/12 02:13 AM Re: Emotions [Re: KP5]
ChristineB Online   content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 9427
Loc: PA
Welcome to OCF, Amylynn. I am so sorry to hear about your father. Oral cancer is such a terrible disease! Here is a list of NCI Cancer Centers. I would suggest you attempt to get him to one as soon as possible. This is unfortunately why a cancer center is so important to get treated at. They use a whole team of experts who are much more familiar with this type of cancer. Best of luck with everything!

If you are having trouble dealing with this, please seek out some professionals to help you.

Edited by ChristineB (05/03/12 02:14 AM)
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

#149007 - 05/03/12 03:06 AM Re: Emotions [Re: ChristineB]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 592
Loc: MA
Dear Amylynn,
My heart breaks for you and your father. There's not much else I can say here that anyone else has already said, but I will offer my hand in support.

Here is a website for an organization that helps with caregivers. My family and friends used it when I was sick. They found it very helpful and it helped to distribute the tasks that needed to be done so that all of the burden wasn't placed upon one person. They can also be found on Facebook.

They give lots of articles/advice about to caregivers in order to help them cope and to remember to take care of themselves during what is likely one of the most difficult times in your life.

I wish for you the strength to face each day and moments of comfort/peace when you can get them.

Take care,
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
42 years old now...I wasn't sure I would make it! Hoping for 40 more!

#149018 - 05/03/12 12:56 PM Re: Emotions [Re: Kerri]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5260
Loc: Toronto canada
The possibility of losing a parent is devastating... My mom and I were very very close and she passed away from lung cancer 11 years ago.. I knew she was terminal from the outset but never gave up hope. What I did do was spend the time with her and enjoy her while I had her. Never give up hope, miracles do happen, there are several people here who have been sent home with no hope and are now NED (no evidence of disease..) drs. Are educated but everyone is an individual and as such their body responds differently. So do what you can to fight this disease, see if there's a clinical trial available - and most importantly spend the time with your dad... It can't hurt and it will make you and him feel good. Hugs!
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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