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Introduce yourself Jump to new posts
Re: One month post treatment, new family Nels 09-17-2021 09:29 PM
Yeah!!! It warms my heart to hear you are improving. My first trip back to the office was also powerful. In fact, each piece of normal (what ever that means) was empowering. First night home, first walk around the block, trach hole finally closing up, slice of pizza, real shower, etc.
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Eating, Speech, Swallowing, and Alternative Feeding Jump to new posts
Re: Swallowing Difficulty Nels 09-15-2021 07:45 PM
I was on a nasal feeding tube as well. It takes awhile to get the swallowing process down. Good advice above to have them evaluate the swallowing process and get more exercises to do. The fact that he can swallow his own saliva is a good sign. That is how I started as well. Then, tiny amounts of water over the feeding tube.

I am about 15 months post surgery and can swallow fairly normally now. But, it did take months and i had to judge my progress in weeks/months rather than days. Hope this helps. Keep us up to date and hoping for a full recovery for you guys.

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Coping / Anger and Fear Jump to new posts
Re: Difficultly coping Nels 09-15-2021 07:36 PM

I am so sorry you are going through this. It is a major challenge and so public when it includes our facial features/speaking/eating. These things are social centerpieces that people focus on naturally daily in our lives. I had a similar process last year and similar challenges. It did take a lot longer than I was expecting to be able to speak and eat. The swelling in my tongue lasted for months. It improved slightly every week but I remember wondering if it would ever come down completely. It does. The hole in my neck was a mess for about 5-6 weeks. My scars are still visible but I sometimes have to point them out to people when I tell my story. Speech and eating are still effected but much better now. People that didn't know me before hear a slight lisp but I rarely have to repeat myself anymore. I eat really slowly and smaller pieces and nothing spicy. No alcohol and really only coffee (not too hot) and water to drink. I really don't miss alcohol except a nice glass of wine with my wife on a special occasion.

Radiation and Chemo will come with their own challenges. I only had radiation. Radiation will jack up your taste buds and burn your mouth and neck. I was down to a very short and simple list of foods to keep my calorie intake at minimum of 2,000 per day. Most things tasted terrible. About 2-3 weeks after my last treatment, flavors started to improve. But, as I am sure you discussed with your medical team, your chances of beating cancer improve significantly with these steps.

Know you are not alone and please keep reaching out to this group for support and help. Wishing you a full recovery and strength for your upcoming treatments.

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Caregiver / Co-Survivor Forum Jump to new posts
Re: Is a Tracheotomy necessary? ChristineB 09-07-2021 04:00 PM
Im very sorry for your loss!!! I cant imagine how much you and also your mother went thru before she passed away. This must be very hard for you and your family.

Im sorry you have not received replies!!! Unfortunately our organization is made of regular people who do not have medical backgrounds, education, hands on experience or the kind of knowledge to attempt an answer. Thats probably why Im seeing a lack of replies. When its something only a doctor or medical professional would be able to answer this happens. Were just a group of OC patients/survivors and caregivers (like yourself) who know the "everybodys different" rule applies to this type of question. Comparing patients doesnt help us either as theres far too many variables making each person an individual which also isnt something we could factor in to help us answer. The people you would get the best medical advice from are doctors or many of the other medical professionals associated with your mothers case.

Best wishes with everything!!!!
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After Treatment Issues - immediate post treatment Jump to new posts
Re: non alcoholic drinks that contain 0.5% alcohol ChristineB 09-07-2021 03:48 PM
As with just about everything relating to OC, it comes down to replies are based on individual specifics of each person (patient). Theres far too many variables involved even when attempting to compare patients with others who on paper seem to match. Just like if asking 1000 doctors if its ok to have a drink a week you would get a very wide variety of doctors saying similar things but thats based on patients who at first glance are very similar and ignoring the most likely red flag ... "everybody's different" The question of is it ok or not ok after going thru cancer, treatments and sometime during or following their recovery phase where does the patients doc stand on after OC alcohol consumption... This is an extremely complex question to answer! Several years ago many members weighed in on a thread on this topic with a general consensus that "in moderation" its ok to drink alcohol but since drinking is a major cause of OC it really is best to avoid it. So much for this being a simple black and white type of question, same thing when considering what the answer is. Im very sorry if I sound like Im making it so much harder than it needs to be!!!

My doc (ENT) and I had several discussions on this topic, His advice to me was absolutely no alcohol of any kind, ever again or I went thru all the OC hell only to drink my way to an early grave. For me, prior to having OC drinking was something I very rarely did ... at most once a year or easily once every 3+ years, or it could be situations in my life putting me in an unusually high amount of events where 99% of attendees have a drink or 2. My ENT also told me the percentage of alcohol is something important to watch if I chose to have a drink with beer or wine having significantly less alcohol than hard liquor. If I were to drink something always try finding the least alcohol as possible. That says to me what you asked about if the amount so low it wouldnt count as being something containing alcohol. Avoiding drinking as much as possible helps to avoid the docs concern of the drink burning your sensitive mouth and throat.

Clear as mud huh? Im very sorry but its so complex and often being OC survivors our docs dont always come right out with a direct answer of either yes or no they say its ok. Best thing I can suggest is to ask each one of your doctors what they think is best for your situation. That is if you are able to tolerate a couple sips without it burning your mouth and throat so much you are instantly in extreme pain. Maybe that would be what makes the decision for you. Every one of us who had rads are much different when they are fully recovered than before they had cancer. Im 14 years post OC (the first one of 3x) and to this day I cant imagine swallowing anything containing alcohol. Im not able to tolerate a quick swish of mouthwash even if it contains a lowered amount of alcohol... my mouth and throat would instantly be on fire just from taking a tiny sip.

Hope you get a much better (and clearer) answer for your docs!!! Please let us know how you make out. Best wishes!!!!!!
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After Treatment Issues - immediate post treatment Jump to new posts
Re: confused and overwhelmed,encouragement appreciated vnoel 09-04-2021 11:54 PM
Thanks very much--I will ask the SLP about this at his next appointment. Yesterday when he attempted even a few of the exercises he was given, he threw up. But today went a little better. I'm not sure if it would have better or worse to know how challenging the post-treatment phase is upfront, but here we are confronting it now. Very encouraged by all the stories and resilience I've been reading on this forum.
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Symptoms and Diagnosis Jump to new posts
Jaw Necrosis /Possible Cancer Michaelii 09-02-2021 04:57 AM
Hey All!! LOVE YOU ALL, and am forever grateful for the love and support of this group.

Today I had a mouth CT (CB CT) and it alarmed the root canal Dr enough to tell me she thinks it's cancer in the jaw.

LOTS of problems, but this would be an AWFUL side effect of the radiation most likely, and I'm pretty freaked out.

Not even sure how to proceed here. Anyone experience similar?

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Introduce yourself Jump to new posts
Re: Newbie family: Not Sure What to Expect Paan 09-01-2021 09:25 AM
Hello modanisa,welcome to our support group you have come to right place for information, when I came home they send a suction machine portable one rechargeable I used it for 10 days at home and gargle salt water and baking soda as much as possible upto 15 times a day read other people post here that helped me a lot and make absolutely sure he don't lose weight Goodluck any questions just post here someone will have answer
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Re: Spitting Saliva When Speaking steve l 08-31-2021 06:36 PM
Hi Steve, yes I get it. ..........I drool , especially when I sleep. Wet around me when I gee up. Also, when I fly and take a nap, It looks pretty bad! But so what, as you said...happy to be alive. My personal experience when I spit of blow food out is that most folks appreciate that I am still trying to live As the saying goes...the new normal

Good luck, Steve
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Long-Term physical and QOL Issues related to treatment Jump to new posts
12 year out and swallowing issues steve l 08-31-2021 04:11 PM
well like many others I have been lucky to be around for a while. I am 12 years post. Mostly good years, raspy voice being the big issue. Much has changed. Back in the spring I was having a much more difficult time swallowing, I always aspirated( I actually I have had mild aspirated pneumonia maybe 6 times in 5 years) my ENT sent me to UCLA for some tests, results, I ALWAYS aspirate, every swallow,. I was having a hard time eating, hard time maintaining weight. The recommendation .......... A feeding tube. I was not overly happy about it, but not much choice. I did bet a PEG one month ago. I am not as happy as a little clam at high tide, but my life is better. I have gained weight, I do not have to fight down every meal. Different indeed and I am working on my new normal I still eat a little bit every meal as the folks at UCLA want me to keep swallowing food and drink, I am maybe 95% tube, 5% oral. I am 70 and pretty active. It is hard to think that I will have this tube for what I hope is a long life. As I get use to it I am adapting. I flew across the country a couple of weeks ago. Biggest problem was telling TSA about my supplies I was taking on board, really no problem, cost only a couple of min. I can not drink when I ride a bike, so I just take a syringe and "drink" when needed.

Of interest to me was the Docs at UCLA said this/I am not uncommon and that maybe 25% of SCC of throat folks who get radiation will eventually have a feeding tube, The fibrosis seems to get bad at 10 to 14 years. I am one of them!!

Steve aka..Tristeve
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After Treatment Issues - immediate post treatment Jump to new posts
Re: Confused about dental work Nels 08-27-2021 09:43 PM

Welcome to OCF! This site has been quite valuable to me as I went thru a similar process as you last year. Surgery, to remove half my tongue and all my lymph nodes on that side, was April 1, 2020. I finished radiation on July 8, 2020.

My dental care has been a constant battle since radiation. I have had a couple root canals, 3-4 cavities, and receding gums around one of root canal areas. Significant dental care after oral radiation seems to be a norm. Receding gums on the other hand, seems to be an outlier. I don't hear this often and my oncologist says it is weird to show up so quickly due to radiation. I also go to my dentist 4x per year plus repair work. I am told this higher frequency is needed to keep an eye on everything and that we need cleaning more often. Lack of saliva drives a lot of our issues and allows more bacteria/tartar buildup/etc. I assume you are using the prescription flouride gel and trays daily and brushing after everything you eat and flossing/gum picks/etc.

I suspect the receding gums and root canals have more to do with trauma/damage/decay I already had in that area. I had a couple crowns there already. Then, radiation zapped it and made it worse quicker. Throw in a lack of saliva and its a recipe for lots of dental work. Total guess on my part.

I found a good dentist that also has some experience with oral cancer patients. Hope you have the same. Keep us informed. Especially if you learn anything about the receding gums. I have been stumped on that so far.

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Symptoms and Diagnosis Jump to new posts
What should l know? First biopsy 9/3/21 ACKbeach days 08-26-2021 10:07 PM
Hi all,
I’m new to the forum and scheduled with an ENT oncologist surgeon for a physical biopsy of a suspicious area in the throat next week.

Has anyone used saliva/biomarker tests to diagnose cancer prior to a physical biopsy? What do you wish you knew prior to the diagnostic biopsy?
Many thanks!! smile
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Introduce yourself Jump to new posts
Re: Newbie to the forum ACKbeach days 08-26-2021 09:37 PM
Hi Jewely,
Love your positive energy planning your kayak outing!
While l am waiting for my throat biopsy next week, l can share that complimentary counseling offered by my local non-profit cancer support center was a huge help in managing my anxiety with my breast cancer diagnosis and treatment. These therapists specialize in cancer patients and understood immediately what l was going through. I am very grateful for their help. Hope it may help you too!
All the best!
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Introduce yourself Jump to new posts
New: Biopsy next week ACKbeach days 08-26-2021 09:08 PM
Hi everyone,
I’m new to this forum and disease. Based on a suspicious cancerous- looking area on one side of throat in the area by tonsils ( if l had them- removed as a kid), l have a biopsy scheduled for 9/3/21. What do you wish you knew at this point in the disease? Has anyone used biomarker tests prior to physical biopsy?
Thank you!! smile
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