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After Treatment Issues - immediate post treatment
15 hours ago
no cancer. doc even said it today that it did not look like cancer even though he expected it to be cancerous. they were quick to call to tell him good news today!

he's moaning like crazy about that incision and i can't have a lot of sympathy. i had 2 c sections and babies to take care of and he will not take pain meds. he can moan all he wants but no sympathy here. I've been in extreme pain for 6 weeks with a pinched sciatic nerve so I'm hunched over and in screaming pain. So, if he wants to hurt, that's his choice! he won't take pain meds as they constipate him.
4 51 Read More
Introduce yourself
Yesterday at 11:57 AM
You'll die but it shouldn't be from stage 1 cancer.

My first cancer operation was in 2003 for stage 1 and my doctors do not detect any cancer in me at this time.
3 93 Read More
Currently in Treatment
Yesterday at 09:56 AM
Hey Laura,

I am not in face book.... But anyway,, I have 2 threads going here under the forum of Currently in treatment.

My SCC cancer has returned. The fast growing Oral Tumor-- Pathology report reads:
Invasive squamous cell carcinoma with Deep Positive margins.

Had my CT scan yesterday and I will be in the Hospital all day today getting my infusion. I

Hope you follow me as you can. My immunology called in another antibiotic to the cancer center pharmacy. Maybe it will be ready today and I can pick it up while there.

Crystak
9 246 Read More
Introduce yourself
Yesterday at 12:49 AM
my husband had 35 radiation treatments, 3 chemo this past year. he said even today, that feeding tube was the worse part. he barely took pain meds through radiation which i know is rare but it's possible it might not be as bad as your husband expects. he won't know unless he tries.

hugs to you Devin.
5 110 Read More
Currently in Treatment
04-24-2019 09:23 PM
Crystal I'm so sorry they are saying there's more surgeries in the future because they fear they didn't get it all during the double surgery. I'm crossing my fingers and wishing in everything in me that your ct scan shows some positive news. I think it's smart that you're mentally preparing for the possibility of not good news. You've went through so much already and I know it's hard to maintain a positive attitude but you're doing great at it. I understand that really we have no choice but basically to 'grin and bear it' when we are told to prepare for more surgeries but it is tough advice, especially when you've been grinning and bearing quite a heavy load now. I hope you're finding some joy here and there through these scary days from your dogs or family or a favorite tv show or SOMETHING. You deserve a respite from all the medical terminology and surgery talk. My cats kept me company while I was home for those 6 months and I did love the kitty cuddles to add a little bit of comfort to my days.
1 55 Read More
Introduce yourself
04-24-2019 05:32 PM
Welcome to OCF, Beebs! You have found the very best site for info and support relating to your recent diagnosis of oral cancer (OC). We have been thru this ourselves or are caregivers for OC patients/survivors so we all understand exactly where you are coming from. We have been there too and will help you get thru whatever path OC takes you on. When patients are first diagnosed they have so many appointments and new things coming at them its can become overwhelming. Many of our members have found learning about OC to be very helpful in enabling patients to be strong advocates for themselves. Our site is Health on the Net certified which means we provide factual and up to date medical info.

To help you to feel more in control of your situation, take it one day at a time and focus on positive things that are within your control. I know it gets scary thinking about all the "what if's" but do your very best to avoid dwelling on things out of your control. Staying busy doing positive things will help you to avoid the "what if's". Almost every OC patient will encounter temporary eating and drinking difficulties at some point in their journey. To avoid having cravings down the road when you are not able to enjoy your favorite foods, start having them all now, desserts too. Dont worry about calories at all, most OC patients end up losing weight from their treatments and increased metabolism burning up calories much faster having cancer. I also suggest reading both the posts here and also on our main OCF site where theres page after page of important info. Ive also included the link to our Understanding section where you can easily spend hours every day reading new info. If you havent already done so it would be a good idea to go for a second opinion before consenting to any surgery or treatment plan. If possible seek a comprehensive cancer center (CCC) where the doctors use a team based approach and they have the best cure rates.

As you tell friends and family of your illness, you may be surprised by some reactions. Its also very common for well meaning friends and relatives to offer advice (almost always its wrong), recipes, other alternative suggestions, etc. Everyone it seems knows their spouses cousins neighbors mother had XYZ and treated it by drinking smoothies made of trees.... thats a far fetched example LOL!!! But seriously, it really does seem like everyone knows someone who knows someone who did this or that often they claim with their doctors blessing but their advice does NOT help anyone with OC. Im letting you know this so you are careful and check things with your doc before trying anything. Dont be surprised if some friends and relatives who had always been close to you suddenly disappear after they are given you cancer news. Sadly, some people arent able to manage their fears and set aside their feelings to remain close with you. Its happened to me and many others here. Once the patient finishes their treatments and gets a good health report, most of the MIA come back and pick things up where they left off when they ran for the hills. Anyone who offers their assistance tell them when the time comes you will let them know what they can do to help. Theres a million things to make your life easier that your network of friends and relatives can take care of. Over the years Ive learned most people really do want to help but usually they dont know what they can do. Things like cooking a meal for your family, picking up dry cleaning, pharmacy prescriptions, grocery shopping, walking the dog, taking your children (if you have little ones) for the day so they can have a fun time while you rest, doing a load of laundry, driving you to appointments, helping kids with homework, mowing the lawn, etc are just a few of the little things that add up to making a big difference in your life when you arent feeling the best.

You are among friends here so dont be shy about asking questions or posting about personal things. Our site is completely anonymous and private, we only know what you tell us and it stays here among friends (who are from all over the world). Yes, we are strangers but we do understand exactly what you are going thru and how you feel. Ive made many life-long close friends from this online support group. Hang in there!!!


NCI list of CCCs

US News Best Hospitals List

Main OCF Site, Understanding OC


3 55 Read More
Introduce yourself
04-24-2019 04:58 PM
My dad had a maniblectomy and fibular free flap reconstruction last year. He had a cancer surgeon remove his tumor and lymph nodes and a plastic surgeon reconstruct his face. It was a long surgery. I was suprised at how great he looked afterwards. All I could think was that he was going to look like the people in the antismoking ads on tv. I think other than his missing teeth and a little droop in his lower lip, it was hardly noticable after the swelling went away, which took a while. Even the scar ended up being in a crease in his neck. He thought otherwise, of course, because hes had 64 years to study his face, but no one in our lives has ever mentioned that he looks any different. He just had another reconstruction, this time in the front, and using his scapula and he still looks great!

I would definitely recommend going somewhere that people are used to head and neck cancers. Theyre going to be best equipped to make sure they get all the cancer, spare what can be spared for function and cosmetics, know what to look for while you recover and be prepared for the special care you'll need right afterwards.
5 249 Read More
Oral Cancer Recurrence
04-24-2019 11:02 AM
Thanks for posting your fathers update, Vicky! Im so very sorry reading everything he has been thru!!! Im sure this has been very hard on everyone.

It sounds like he has been thru one thing after another for your father. After going thru so much its often difficult for patients and caregivers to stop waiting for the other shoe to drop. Just hearing the dreaded "you have cancer", is traumatic to most of us.

As far as whats next IF your father has a recurrence... it would be treated with either surgery and/or in some cases rads. Patients who have already had rads can and do go thru rads again. Some OC patients with recurrences or mets to other areas (especially the lungs) may be candidates for the newer immunotherapy drugs Opdivo or Keytruda. That type of chemo works for some but not others, its made to work with someones unique immune system which gets very complicated. After going thru surgery and/or rads to eliminate the OC, patients get followed by their doctors for 5 years with scans and thorough exams to watch for any irregularities. This is done after waiting for 3 months after rads or surgery to hopefully avoid getting a false positive which unfortunately can and does happen. The scans light up red for inflammation and infections just like they do for cancer. One important thing about being followed for 5 years... IF the cancer returns it usually is found very early making it much easier to treat. Just remember... IF is the biggest 2 letter word, it does NOT necessarily mean your father will have another cancer diagnosis, fortunately most do NOT!!! Every single person here regardless if they're a patient or a caregiver has the same recurrence fears. For many, therapy and/or meds help to get past this fear and of course time heals all wounds. About all any of us can do to move past the constant fear of recurrence is to focus on the positive, making the most of every day. It helps to know we are not alone in this, we're all in this together and when we are feeling low, its perfectly ok and understandable to lean on others. Thats one of the very best things about OCF, the lifelong friendships and strong bonds formed over some of the most horrific experiences.

Please dont be a stranger! We're here for you as well as your father and family. Best wishes with your fathers continued recovery!!!

2 56 Read More
Symptoms and Diagnosis
04-23-2019 01:01 PM
mine was diagnosed with stage 4a in July 2018. He had lots of lymph node involvement and HPV. He is having a biopsy tomorrow on his adenoids as it's suspicious. They want to see if it's inflammation or new cancer. There is always hope and treatment has become so much more effective these days. Best wishes
4 1,301 Read More
Long-Term physical and QOL Issues related to treatment
04-22-2019 10:27 PM
Wow, THANK YOU for this information. (Don't tell my family though, or they'll never let me roller skate or ice skate again!)

Now I'm kind of wondering why they went with screws to start with... hm... but oh well, we have what we have. Some friends in my Sunday School class (older than me) were telling me their hip replacements were a piece of cake, but I thought they meant like what I was dealing with, because they were comparing it to knee replacements. (Which I hear are dreadful.)

My primary doctor is very good about keeping aware of my cancer issues and how that affects my future health, but if bone issues come up, we'll make sure he double-checks on medications. My pharmacy is pretty good too, but that might be stretching their genius a little too far. (They catch allergy issues for me all the time ... not stuff from my primary but from specialists.)

And the astronaut thing is cool!
8 215 Read More
Introduce yourself
04-22-2019 06:58 AM
Hi Paul,

I should clarify-- I said we have same cancer, however mine was Negative for all HPV types. My primary tumor was completely negative as we're my recurrences and new primary. Sadly, they had deep Positive Margins, invasive-- but no HPV.

That's a plus for you, though, as your aggressive treatments more likely achieved a good effect. , ongoing.

Very best to you going forward!

Crystal
6 328 Read More
Introduce yourself
04-20-2019 04:05 PM
Welcome to OCF, Gayle! You have come to the best place for online support and correct medical info about anything and everything to do with oral cancer (OC). When first diagnoses it can be quite overwhelming to most of us. Theres so many appointments and specialists to run around seeing that it can make your head spin. Take it one day at a time. Now that you have found our site, we will be here to lean on and ask questions.

During your treatments and recovery its a very good plan to focus on what is within your control.... your intake! The very best thing you can do to help yourself prepare is to start by eating all your favorite foods, desserts too. You do not want to go into something like this having cravings. This is even more important if you are on the average of slim side, try to gain a few pounds before anything begins.
Unfortunately any disease that affects the mouth will also affect the patients ability to eat. For most patients, this is only a temporary thing.

Hang in there! Best wishes with everything!!!
1 101 Read More
Oral Cancer Recurrence
04-20-2019 02:47 AM
So happy to hear everything turned out well.
5 3,260 Read More
Symptoms and Diagnosis
04-20-2019 02:33 AM
Hoping your results were good since no further post but please let us know how your doing. Fingers crossed all went well.
4 587 Read More
Introduce yourself
04-17-2019 04:00 AM
Great information Brad!

The opioid usage after rads is my life right now so I understand your situation perfectly. I am right now 3 months out from ending radiation but have residual pain that has me stuck on oxycodone about 40 to 50 mg per day. Luckily, my rad onc. was USUALLY clear about 'cutting back' and I usually would follow up to get specifics on what she was expecting. I will say at one point I was trying to cut back too fast and my symptoms were stomach pain and up in the middle of the night out of no where needing to empty my bowels. Luckily, she had warned me to watch for warning signs of withdrawal while cutting back so I immediately thought of opioid withdrawal and went and took some oxy. Problem solved! But you have a good point, when they ask you to slowly cut back, well really we need specifics!!!


Good luck on your ongoing recovery!
3 183 Read More
General Board
04-16-2019 03:45 PM
I never knew there was a World Voice Day, but there is, and today is the designated day, April 16th. I don’t know if this day was coordinated with Head and Neck Cancer Awareness Month in April, maybe it was? I was reading this started in 2002. Apparently, this year, there are 25 events in the U.S. It’s a little too late today to visit any of the participants, if their in my area, but I will keep this in mind for the future.

I did utilize several SLP’s, Speech and Language Pathologists, and a Voice Doctor (otolaryngologist) at the hospitals Voice Center, through the years, and they were helpful.

https://www.entnet.org/WorldVoiceDay
0 41 Read More
Introduce yourself
04-15-2019 10:26 PM
You're welcome Pat smile Were all in this together! At OCF, we try to help each other to make some of the hardest days/nights of anyones life a little easier to get thru.

Hopefully your father has tried a few of my feeding tube suggestions and he will feel a little better than he had been when he uses the tube. Having to depend on a feeding tube can be difficult for some to mentally handle. I sure didnt want to have one when my doc told about feeding tubes, I was shocked and horrified thinking about a plastic tube sticking out of my abdomen. In time, most patients adjust to a routine and do better managing their feedings and nausea.

Glad to know my overly long post was helpful. I was worried I gave you too much info and was a little too open and honest which can scare newer OC patients and/or their caregivers. Thanks for letting me know!!!
3 308 Read More
Long-Term physical and QOL Issues related to treatment
04-15-2019 12:12 AM
Hi Marie,

Would you please share the name of your ENT doctor? I'm also in AZ but had my surgery back in Rochester. If you're more comfortable, please private message me.

Thank you,
Susan
1 117 Read More
Currently in Treatment
04-14-2019 12:47 AM
Dear Mike,

Please keep me ( and us) informed on your progress.
Our stories are similar... I am almost 2 years out now -- but I am 100% dependent on my G tube, and have 0 ability to swallow solid food.
And they are being generous allowing me liquid diet, because I do aspirate into my trachea and lungs.
Tonight, I have my 5th Pneumonia, since my cancer diagnosis.
Thursday I had double surgery in the Main OR, and my 2 Head & neck surgeons operated on 2 different sites. Awaiting 3 new biopsy reports.

That's the cool thing about the site here-- we can talk with others who have walked in our shoes. I vividly remember all the milestones you talk about, and the ones that just won't ever happen, too.
We just have to create our New Normal.

Take very good care,

Crystal
3 425 Read More
Currently in Treatment
04-14-2019 12:27 AM
hi Lincolnob,

Be aware that mouth and throat issues will be with you, for a while!!
I am almost a year out from my rads, -- and I still wake up during the night with throat on fire, painful swallowing so I keep a thermos of Ice Water on my bedside table. I sit up and drink from it, during the night.
By the end of radiation ( not to scare you!) -- I was in the hospital, coughing up chunks of bloody epithelium ( pieces of peeling off throat,)... Along with a nasty infection, and pneumonia... It happens.

But yes, check in with your Radiation Oncologist once a week. I did this too but I tended to blow up on a Sunday, and have to go to Emergency department.
Medical oncology told me I was getting a very high dose of radiation... In fact, they were angry & thought it was too much....

I have a friend who just completed hi 33 treatments, with no problems. I was so happy for him !!
I wish it for you too.

Crystal
3 211 Read More
Introduce yourself
04-13-2019 11:12 PM
Thank you so much for replying, Christine.

Seeing him suffering the headache is really hard for me, since there is nothing I can do to help. And yes, the Oral surgeon did gave me pain meds, but in between 2 pills, it still hurts a lot. Just have to tough up a few more days. It is just that I did not see many post stating headache would come with OC. But yes, could be one of the reasons you stated. A friend of mine whose husband had stomach cancer experienced should pain, but after cancer removal, shoulder pain went away.

Thanks for advice on keeping myself healthy emotionally. I talked quite a few of my friends who are either cancer survivor and cancer patient's spouse, they offered a lot of emotional support, which is what I need the most now, after surgery probably help with errands and around the house would be needed, I have not given much thought at the moment. Oncologist did described tough road when rads started.

Thanks again.
2 188 Read More
After Treatment Issues - immediate post treatment
04-13-2019 02:46 AM
Im so sorry!!! I hope its just a problem with delayed healing after going thru rads. After going thru rads w/ chemo, Ive had many more biopsies taken on areas that didnt "look right". Thankfully they were all negative. Hoping the same happens with your husband. Maybe this will be a wake up call and he will begin to understand just how serious OC can be.

Wishing you both all the best. Please keep us posted.
7 370 Read More
Medications, Treatment, Procedures
04-12-2019 07:12 PM
Good luck moving forward, Judy 210!
5 431 Read More
Medications, Treatment, Procedures
04-12-2019 10:00 AM
Heres some reading about the "new" Biotene we see on todays store shelves. Before you spend money on overpriced mouth rinses, read these posts!!! .......

OCF forum, Biotene Products

OCF forum, Return of Biotene

PS.... These links show what OCF's founder Brian Hill does behind the scenes every single day to helping thousands of OC patients and caregivers.
3 90 Read More
Introduce yourself
04-11-2019 06:55 AM
Hi Marie, congratulations on your marriage. Those that support others through treatments are keepers. I'm not here too often anymore, it's 8 and a half years since we were diagnosed. Hope all is well with you.
Tammy
2 300 Read More
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