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Joined: Oct 2012
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I just joined this sight and read a few of the posts. Im happy for all of you that are doing well and are cancer free. I wish that was the case for my husband Jim. He is 44 years old and was diagnosed with stage 4 tonsil and lymph node cancer, HPV positive almost 2 years ago. After a grueling 5 months of chemo and radiation he was given the remission status. 3 months later a cat scan showed that the cancer spread to both lungs with 2 tumors in the right lung and 1 in the left. He had a wedge removal surgery of the left lung last December and was given a year to live. The cancer is now progressed to 11 tumors in both lungs, 3 lymph nodes in both lungs, the right and left main bronchi are encased by metastatic lymph nodes and the right and left pulmonary arteries are partially encased by metastatic lymph nodes. Chemo and radiation stopped working in March and this past June he started a clinical trial that we found out yesterday didnt work either. He starts his 2nd clinical trial in a couple of weeks. His cancer is now terminal with the best estimation being probably sometime in this upcoming year. This cancer was caught early, at stage 1 tonsil cancer. It was found by accident at the dentist. We went to the best doctors at the best hospitals. His oral cancer has not come back but we didnt catch that one cancer cell that found its way into his lungs. Im feeling very lost right now as to how to help my husband. We are terrified at what is to come and pray everyday that these clinical trials will give him a little bit longer. Anyways, my therapist that I started seeing recommended this sight for me. Thank you all for reading this and letting me tell our story. I hope someday soon to get back on this website and give you all a positive story with the new clinical trial he starts soon. Good luck and prayers to all who are suffering from this horrible disease.


Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
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"OCF Canuck"
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I'm so sorry this happened this way. frown 5 mos of chemo and rads is a lot! Your husband is a trooper. his cancer sounds very agressive - and stage one is usually optimal I'm so surprised its become so invasive. There are several people here who've had repeated recurrences they can likely give you some much needed support. I will definately say a prayer for your hubby. Miracles do happen. I'll hope or one for him. 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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"OCF Canuck"
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I am so sorry for what you and your family are going through. No wonder you are feeling lost - I am sure these last two years must seem like the worst nightmare ever. How we all wish there was something we could do to ease your pain. It is sometimes difficult for this "virtual community " to get you tangible assistance, but here is where you need to be very specific with family and friends. When they say "is there anything we can do " or a version of that, lean on them with tasks they CAN do for you to allow you more time with your husband - people who offer really do mean it but all too often they are not asked to do anything. Dishes, shopping, whatever the task - get as much help as you can. Don't forget to try to take care of you too - you will need to rest and eat well to be fully present.

Hugs

Donna

Hugs to you both.


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Hi Wendy - What a rough road the two of you have been on! I do hope that the next clinical trial your husband starts soon will be the one that changes things for the better. As Donna says, i t is important to take care of You, too - and let friends and family share some of the tasks. People do want to help but often, they don't know how unless you tell them. Perhaps you could make a list of the day-to-day things that need doing or things that your husband would like that he hesitates to ask for. Whenever someone asks how they can help, you can show them the list so they can pick something they feel comfortable doing and it can make someone who cares about you feel really good to be helping out in some way. Check back here often and let us know how things are going.


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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Welcome to OCF, Wendy. Im very sorry to read about Jim's and your struggles with oral cancer and all the horrible things that go with it. What a terrible road you both have been on. You will find some comfort here with our members to help give you moral support. We even have a special section for caregivers. That was made for situations like yours where the caregiver can vent and people will understand and offer their suggestions and understanding.

Please remember during all of this to take a couple minutes a day or once a week for yourself. Being a caregiver can be a thankless job full of stress while you try to keep a smile on your face. I have the utmost respect for all of our caregivers. Sometimes the stress of being a caregiver can be alot to bear and they will need some help. Dont be ashamed to go speak to someone professional or to take some anxiety meds to help make this easier to cope with. It happens to the very best caregivers.

As the time draws near have hospice ready to call for assistance. From what I have read from other members, it has made things so much easier for the patient. They will ensure the patients comfort while maintaining their dignity.

Again, I am very sorry to read about Jim's situation. Hope you will stick around and get to know our wonderful caring members. I know we can 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
-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
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Thank you all so much for you kind words. I just started seeing a therapist to help me deal with what is happening now and what is to come. 2 months ago Jim had a chest tube put in for a collapsed lung and then 2 weeks ago we found out there was heart damage from the cancer and his heart is releasing enzymes that only release if there is damage. Today he woke up with terrible shoulder pain which is the first sign that the lung is collapsing again. They said if that happens again he needs lung surgery that is going to "glue" the left outer lung to his chest wall to seal up the holes the cancer has made in his lungs. It is always something and is very hard to keep a smile on your face everyday. I envy you all so much that you were able to overcome this cancer, which we were told 2 years ago would stay local in the tonsil and he had a 90% chance of longterm survival. You sometimes scream, cry and wonder why did it happen to us. Jim is about to celebrate his 45 birthday and it will probably be his last one. Do you know how hard that is?? I am going to look at the section on caregivers. Im sure that will help me alot in addition to my therapist and group therapy that she is looking into for me. I am friends with a doctor who is looking into hospice for me when that time comes which im hoping will not be for quite awhile. I will update again and let you know how the next clinical trial he starts is working. They said they wont be able to save him but maybe prolong his life for a bit and the information they get from these trials will help cancer patients years down the road so at least his death will benefit fighting cancer in some form. That doesnt make this any easier but he is doing his part now for cancer research. I wish you all continued good health and pray for a cure for cancer so wonderful people like my Jim dont have to lose their lives at only 45 years old.


Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
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I also forgot to explain that in my first post when my husband was diagnosed it was with stage 1 HPV related tonsil cancer. By the time the doctors made his radiation mask and pulled out almost all his teeth and go their acts together the cancer spread to the lymph nodes and reach stage 4. I just didnt want to confuse people with stage 1 and stage 4 at the time he was diagnosed. sorry, should have been a bit more clear earlier.


Age 44.Tonsil HPV stage 4. Radiation/Cistplatin/peg tube. Spread lungs,stage 4. Lung wedge removal 12/5/2011. Carboplation, erbitux, 5fu until 5/2012. Clinical trial Anixinib.Disease progession in lungs,brain,colon,stomach,intestines. Hospice started 12/20/2012, passed away 1/3/2013
Joined: Oct 2012
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Hello Wendy,

While I was reading your post I remembered this beautiful quote:
"When you feel like giving up, remember why you held on for so long in the first place."

I am proud of your husband for fighting a good fight and for you for being the "wind beneath his wings".

May you find peace and love knowing that we are all here for you. My thoughts and prayers are with you and your family. Take care of yourself.

Ina

Last edited by Ina; 10-13-2012 07:51 AM.

Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
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Posts: 3,082
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I get the screen name: JimandWendy since right now that is how it must feel to you. Only you and him against a cold heartless unfair world where others get this disease and yet they are not heading for a hospice. I know its not much comfort, but my five years with three recurrences, each time happening just when I though I had it beat does show you that it's not always as easy for the posters here as we make it sound. Trust me, we all know pain and suffering from this disease and even those of us who survive have issues.
We have lost members - some younger than Jim. So vent, rant, cry, question here where at least we understand the context.
The caregivers on this board are very helpful, turn to them.
I just wanted to weigh in as a patient who had not done very well in the course of things so you would not feel so all alone
I'm old and remember the Dupont TV commericial:[quote] Better Things for Better Living: Through Chemistry[/quote] and only the bolded part became a national slogan. It's good advice here; In my opinion, you are facing a clear case of situational anxiety/depression and are a good candidate for Ativan, Zanax and Zofran. Jim is a good candidate for the Fentanyl patch. Push your doctors hard for real pain management. This sounds like a very aggressive cancer to have progressed so quickly from Stage I to Stage IV



65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Hi Wendy,

I am so sorry for your pain as a caregiver. I have been helping my father with his cancer for several years and I know how difficult it can be to see your loved one in so much distress. Make sure you get rest and nutrition and take up any offers to help, as others have said. That is the best thing that you can do for your husband...take care of yourself. I think the most difficult thing about being a caregiver is being that pillar of strength for the patient so that the patient can focus on himself instead of worrying about the impact he is having on his loved one. Just know that you are not alone, you are in our thoughts and prayers...I have found this community to be an incredible source of support (I only joined this week, but have been coming to this site for years). And one more thing...for me, the key is to never give up...I think everyone deals with this differently, but the only time I feel truly depressed is when I feel like everyone around me is giving up on my father. My father is a fighter and it sounds like your husband is to. As long as they have that fighting spirit, then we won't give up either and that little bit of hope lives on. Keep your focus on that light...that glimmer of hope. I read a very good quote, I think on this site, that I say to myself everyday now...don't borrow sorrow from tomorrow. There is a time to give up, but today is NOT that day. Today, your husband lives and fights the good fight. Today, the battle continues...and we will be there with them, giving them strength to continue on. Take care, Ang


Ang - Father first Dx Jan 05 SCC floor of mouth, stage 1 surg/rad treatment; recur May08 near jaw bone surg/rad again; recur Oct10 in jaw bone, partial bone removal no rad; recur Oct 2012, surg. to remove but some left in neck and waiting for treatment recommendation - he is a warrior!!!
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