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Introduce yourself Jump to new posts
Re: Stage 3 SCCA Ali E 40 minutes ago
Negative… Squamous Cell Carcinoma Antigen is what I was told it was called. But thanks for finding what was important to you for a reply.
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After Treatment Issues - immediate post treatment Jump to new posts
Re: tongue still feels weird Ali E 4 hours ago
How long did it take for your tongue to have feeling back where the surgery was? Mine is still numb feeling and swollen on half and my surgery was 3 months ago.
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Currently in Treatment Jump to new posts
Re: Finishing Radiation - SCCA Brian Hill 6 hours ago
Like Nels said, everyone is unique and different. It was three months after the end of treatment before the pain of it all started to die down for me. I was on strong pain meds well into my fourth month of healing. Eating was a slow transition from the PEG tube I was on to soft wet foods that also took quite awhile. I hope you have an easier time of things, but expecting to be back to normal, from reading patients posts here for years, seems a little optimistic. I hope I am wrong and your journey back to normal is short.
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After Treatment Issues - immediate post treatment Jump to new posts
Re: Tongue free flap going white Brian Hill 01-26-2022 04:17 PM
I have seen and heard of patients that have these kinds of tissue transfer flaps have the tissue change color a couple times early in the process. This is a function of the new vascularization of the tissue. They seem to start out pink, turn grayish and return to pink as the new micro vascularization occurs and reflects the changing tissue as the blood supply changes.They also seem large at the beginning and ultimately get somewhat smaller as they heal in. I have not talked to anyone that has had this happen far into the process and I think you need to see your doctors soon for their take. Causes for this might be an infection that has taken hold, either bacterial or fungal.

I hope someone joins in with some direct experience. I wish I had a better answer for you. Please come back after seeing your doctor and let us know what this was and what the solution to it is they are going to apply. It will help us understand it better, to in the future help others. I hope you find this is something simple and easy to deal with. Wishing you the best. B
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Introduce yourself Jump to new posts
Re: New to forum & newly diagnosed AJC 01-26-2022 11:20 AM
Thank you so much for responding. Yes, a big part of my fear right now is related to the unknowns & how the info seems to be changing every few days. I’m just anxious to start treatment.
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Re: Tooth extraction post radiation Andrew111 01-26-2022 12:52 AM
I'm in Los Angeles, so if you need to know who my oral surgeon/pario is I'll post the info.
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Re: Carotid Artery Occlusion SDW 01-25-2022 07:16 PM
Will do Brian. Thanks I’ll be in touch.
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Long-Term physical and QOL Issues related to treatment Jump to new posts
Re: Is Radiation worth it? Brian Hill 01-25-2022 05:06 PM
If yours were an HPV positive cancer I would have a very definite opinion. Those cancers respond very well to radiation, and we now have seen excellent results over a period of more than 4+ years in de escalation trials of people at half the radiation dose having complete resolution of the cancer, with few of the long-term consequences of 65 gys over six to seven weeks of treatment. But yours if you are a non smoker (please comment) with an unknown etiology, are not eligible for that.

There isn’t a scientific answer that is black and white to your question. We have seen people have surgical only solutions and do well. Others have multiple recurrences and surgeries to resolve them. The cancer keeps returning even with what appear to be clean margins. They survive all these, but it’s a reoccurring issue every few years. People that have follow up radiation do not seem to have to deal with the recurrences. But they do indeed live with significant long-term issues that arise over a protracted period of time. Some of those you mention, but there are far worse ones. They are mostly things that are livable, but there is no denying that they compromise your quality of life sometimes in the extreme. I had lots of radiation, before IMRT and its improved targeting. My life is full of difficulty and compromises after about 18 uneventful years.

The issue is often that these tongue cancers are not focal areas of cellular conversion. It’s related to something called field cancerization. The surgeon gets clean margins, but in surrounding tissues there are cells that are not cancerous but dysplastic, meaning they are changing from normal to malignant and are at some in between stage of transformation. It not surgically possible to keep cutting to try to remove all those small areas as the size of the surgical field be one very large and that has significant life impacts of its own. A larger field of removal could be grafted with muscle from somewhere else in your body, but again a more involved process, and if too large is harder to ensure you will have full movement of that part of the tongue. These are all questions to discuss with your doctors. Everything has trade offs. And I do not think there are any absolute answers. You don’t mention etiology, and that would impact your decision.

I did not have a choice about radiation. My disease was very advanced. I would in todays world even at similar doses, have had a much more confined field of radiation that was closely mapped. That might have eliminated some of my worse after effects. They are really bad but I would not assume that your experience with IMRT radiation would be the same as mine with XMRT. You might explore getting more targeted proton beam radiation which is more sparing of surrounding tissues, but it’s usually very targeted, and that’s not why they are recommending your radiation. They want to paint the surrounding areas. Please let us know what you decide and their arguments for their recommendations. I wish you good luck no matter your future treatments. B
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Introduce yourself Jump to new posts
Re: segmental mandiblectomy Brian Hill 01-25-2022 04:59 AM
I know lots of people who have had this done, and I’m also one of them.

I think your first paragraph meant to say recurrence, not remission. Probably an auto spell checker error, I hate those things. Obviously recurrence is the cancer coming back, remission is it going away.

There are few cures for ORN outside of surgery that consistently work. I answered a previous thread on this just recently that talked a bit about hyperbaric oxygen therapy, and also the use of a drug, Pentoxifyline combined with vitamin E that has been shown in some studies to increase the micro vascularization of bone. You can search for my previous posts here and find them. Both ideas have several peer reviewed papers written about them, both have great results in some people but not others. The studies cannot say why. As a result doctors either believe in these ideas or not. The science is not definitive. O2 dives are not always covered by insurance and they are expensive. The lack of coverage is the result of mixed outcomes. There are few downsides. Pentoxifyline is not associated with many negative side effects either, and might be worth a try. It’s an Rx idea, so you need your doc to buy into you doing this. I tried both without the kind of success that would allow me to not ultimately end up having surgery done. So I’ve got experience with all three ideas.

The surgery is called a fibula free flap. It’s a pretty big deal. It can take from 8 to ten hours to do. You want to choose a surgeon and institution that has done a lot of them successfully. They will take a piece of the non load bearing fibula leg bone, and a small pedicule of the muscle surrounding it to get the vascularization that supports it, and after taking out the necrotic part of the mandible, replace it with the section of fibula. Tomorrow I’d be happy to answer any questions you have about the surgery. Mine did not go as well as I hoped, but after an immediate failure, and a second and ultimately third surgery in ten days, it ended up working. I do not think my experience was the norm, and we can discuss why. So food for thought. Talk to your docs, head and neck surgeons not oral surgeons, about their thoughts. Then ask me what else you wish to understand about this. Lots of these surgeries are done every year. It is the “go to” idea, with a high degree of success. Healing or reversing osteoradionecrosis which is essentially dead bone, can only be done occasionally by the other two methods I described when it is very early in its development and small in size. B
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Left Behind. For those who have lost their loved one. Jump to new posts
Re: Missing my Dad Michael Young 01-23-2022 09:36 PM
sorry for your loss

another covid-related victim
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Eating, Speech, Swallowing, and Alternative Feeding Jump to new posts
Re: Help !! Lost and scared - need feeding info Brian Hill 01-21-2022 11:41 PM
I think that gmcraft makes some good points. Clearly we all agree that doctors with more knowledge and particularly intimate understanding of any particular patient are the people you have to trust. We as travelers on this journey have experiences to draw from, but they are never the equal to their years of school and clinical experience. We are not a substitute for them. But I have seen many examples over 22 years of doing this, that have taught me they are fallible human beings like all of us, and are not all knowing, and even sometimes make mistakes. Even with that knowledge people have to have their bottom line, go to person, that they trust and who is qualified to not only treat them, but answer a myriad of questions, many outside their area of expertise and training. The question is should we be asking a specialist in chemo therapy for answers about something related to eating?

For instance, I trust my radiation oncologist to determine in his area of experience, training, and expertise to use the tool he is trained in to kill my cancer. I’m less interested in what he thinks about surgery which is a world of details and a depth of anatomical knowledge he will never have. Ditto what he thinks about nutrition, also out of his realm. When it comes to PEG tubes I trust my Gastroentorolgy doctor, but even he is not a nutritionist. It’s a very specialized world to be in medicine. Knowing that, we trust teams over singular doctors.

The topic of blended diets crosses two different disciplines gastro and nutrition. Each with a perspective of a topic that has evolved and changed greatly just in the last decade. The Oley Foundation who has more information about tube feedings and nutrition is a good source. I read about my button type Mik-key PEG tube system there and I knew immediately I wanted rid of my dangling tube that was in the way, prone to clogging and had no good way to unclog it at home, causing emergency trips to the hospital to have it taken out and replaced, and in general as something not being balloon retained, that I could not change ever at home. Only my GI doctor understood my desire to change and why, the rest of the team was clueless that the button type even existed let alone its advantages.

When it came to nutrition, my original nutritionist was only interested in keeping me on pharma company formulas. God forbid that I should eat the real food that has sustained me and most of humanity forever. Brainwashed comes to mind as I think of that. Obviously to her, those canned products must be better in someway.

There are reasons for some people, in some situations, that formulas are better. But tens of thousands of people on PEG tubes blend their own foods when they return to a normal life, but are NPO or nothing by mouth for various reasons. There is no reason that with a little education people cannot do this if they do not have contradictory medical issues. It’s healthier and cheaper. Even if they just blend up what’re the rest of the family is eating most of the time, they are frequently better off. They are no more prone to nutrition or digestion issues than anyone else. Most of America lives on junk food. It’s bad for you on so many levels. My cardiologist could not be happier with my cardiovascular health since I started eating the things I do on a real food, PEG diet. Every part of my blood health is at optimal levels. Even my blood pressure went down to normal over time as the fats and other things I was consuming no longer clogged my arteries. I’m actually healthier this way. All that aside I would kill today to eat some great tasting well cooked meals; even a hamburger commercial reminds me of what I have lost. Food is one if life’s great pleasures. I’ve come to accept its absence. But if I have to do things through a tube I’m going to optimize it. That ability to add a variety of healthy natural foods is not happening on canned formulas. Just read their labels.

Just remember that doing this well is very dependent on getting set up right. The right blender, the right diameter PEG tube and design, the right consistency of blend for bolus syringe feeding. None of this is rocket science but you have to learn it like anything else.
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Medications, Treatment, Procedures Jump to new posts
Re: Quick blender ideas Brian Hill 01-20-2022 02:47 AM
We tried a lot of blenders before we developed a relationship with Vitamix. You will find lots of opinions from people but we actually bought the three top brands and put them through their paces. It wasn’t a surprise that the brand chosen most often by commercial kitchens, that has to do a fantastic job in producing very fine blends and do it day in and out without issues or breakdown was the Vitamix. It was also the most expensive. That said having a cheaper one that breaks down is a real problem when your ability to eat every day depends on it. Having your tube clog over and over because the blend isn’t smooth enough, no one has time for, particularly if your tube feeding line is not detachable, and easily cleared.

Vitamix can be acquired through numerous sources of which OCF is one.

They have more models than others, but for us as PEG tube people, most of those fancy features we don’t need to spend money on. So here’s one confusing part, because they sell through lots of stores, Costco, Williams Senoma, and others. In order to do that, the exact same machine can have different names and model numbers. That way the public cannot easily comparison shop prices. Good marketing idea perhaps, but it makes things confusing.

So we need to look at features, not names or model numbers. Also we handle a lot of their refurbished units which you can’t tell from new, and those also have long term warranties. So we check that inventory first.

The important features are a 2.0 or 2.2 horsepower motor. A four inch blade is preferable but the three is almost as effective. The four inch for the same number of rpms will have its tips spinning much faster, helping the final smoothness of your blend. The bowel should be their large one over 60 ounces of blend capacity. And if you want it to fit under your upper kitchen cabinets since it will be out all the time, NOT one if their tall bowels. They put various colors on sale occasionally, and we don’t care about that so which ever color is on sale is our go to.

With all this in mind, visit their website at Vitamix.com and start your search. “Next Generation” units are a good start. They have all the features we are looking for. So next gen refurbished is a good choice. Remembering they have lots of models, but ignore that and look at the spec sheet. If it meets the above criteria then you have found your machine. We don’t need a machine that has pre programmed features. That adds a lot to cost and we are doing only one thing.

If you would like me to do this for you I will. But we need to get a unit in your hands quickly.

Armed with that you will need plastic 60cc syringes to bolus feed your blend into your peg. In the US Medicare, gives me tons each month for free. I’m not sure of your situation in Canada. You will need a supply of 20 oz paper cups, which are the cheapest ordered through Amazon. I will get you a link. Ok now you are armed to feed yourself starting with my recipe. Don’t worry about the amount of water, someone has mentioned to you. They are probably thinking of bag drip feeding, and we are not doing that. You can thin any batch with it, and you will need two or three 60cc syringes of water to flush your tube at the end of feeding.

More after I see you post a reply. B
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Symptoms and Diagnosis Jump to new posts
Re: Jaw Necrosis /Possible Cancer Taalica 01-20-2022 12:46 AM
Hey buddy, I hope you get it right. Pray that you would be healthy! Cancer is one of the worst diseases that claims the lives of millions of people around the world every year. I sincerely hope that someday they will find a universal medicine that can easily fight cancer. When my friend Brad got cancer, we were all desperate. I wish you all good health!
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Eating, Speech, Swallowing, and Alternative Feeding Jump to new posts
Re: Vitamix Brian Hill 01-20-2022 12:25 AM
We really should move this discussion off of this couple year old thread, and start a new one. I’m around and available, and happy to help you through the current challenge. Christine has also been dealing with some challenges of her own, and necessarily been absent from the message boards. So please stat a new thread, update me on where you are with things and what your immediate needs are, I will reply late tonight or first thing tomorrow. Hang in there. Brian
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General Board Jump to new posts
Re: 2 years update Paan 01-19-2022 08:21 AM
Thankyou Nels, yes I got so much knowledge from here that Dr's don't tell us.
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Oral Cancer Recurrence Jump to new posts
Re: Here we go again Nels 01-18-2022 10:47 PM
Thank you both for sharing your stories. Epitome of perseverance and inspirational to me. Stay safe and keep the faith.

Nels
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Symptoms and Diagnosis Jump to new posts
Re: Mild Atypia & Laser Ablation Brian Hill 01-18-2022 08:33 PM
Well the good news is that what was a visible lesion is now gone and vaporized. That likely translates into no longer a threat of becoming something more.

If the doctor is right and this was caused by chronic irritation, and the source of the irritation is not eliminated, it’s likely to return down the road. So every few years this could be a reoccurring exercise. It might be prudent to look at that adjacent tooth and grind and polish back the portion of it irritating the soft tissue to stop any recurrence.
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Introduce yourself Jump to new posts
Re: Introducing myself, mid-treatment Brian Hill 01-16-2022 11:41 PM
After my initial treatments a long time ago I had about 18 years of eating like a normal person. Ultimately I lost my ability to swallow and even drink water or smoothies by mouth. The radiation over years had damaged the nerves that control all this, and I ended up on a PEG feeding tube full time. During the second half of treatment and for about 4 months afterwards I was also on a PEG tube which I transitioned off of gradually to eating normally, so while its been awhile, I remember the difficulty of the process, and what worked and what did not.

Even during treatment I was always able to swallow, it was just wildly painful. So I started losing a ton of weight, and they made be put in a PEG tube. I was lucky they did. Not getting good nutrition while you are going through all this can really slow down your healing, and also weaken your immune system making it easier to catch colds and the flu. In a Covid world you don't want that.

In the beginning only things that were very wet and even slippery were doable. I ate a ton of canned peaches in syrup right out of the fridge cold. They went down easy and the cold helped with the pain of swallowing. Eventually I transition to things like very wet scrambled eggs, very wet mashed potatoes, baby food (yes it worked and I got ribbed for it a lot) From there it was warm, not hot soups, mostly ones that didn't have any chunks of things in them. It took months but eventually most things went down easily, and life returned to normal for 18 years. Then it suddenly went backwards and that is not fixable. I also lost my speech about the same time and more.

I think it is worth trying to keep your swallowing active, it will make it easier to transition back to normal eating. That's even if it is just slippery cold peach slices. The issue of getting a bolus of food to the back of your mouth with your tongue is something that may limit this. If that's the case, then fruit and vegetable smoothies made in a Vitamix blender will be thing that you can get back to your oropharynx pretty easily, require no chewing, and can be highly nutritious. But this is very much a trial and error process, and everyone depending on where their treatments are occurring in their oral cavity is different. Since you are still in treatment, keep trying, but also keep your expectations in check. This area is really damaged, sore and not working right. That is going to take time to return to something close to normal that you don't have to consciously think about. B
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Eating, Speech, Swallowing, and Alternative Feeding Jump to new posts
Re: Help and hope for some info Brian Hill 01-16-2022 11:17 PM
.https://oralcancerfoundation.org/pdf/Brian-Vitamix%20recipe%20%231.pdf



Brian’s Vitamix smoothie recipe

64 OZ blender bowl full, yields 6-20 oz cups,
approximately 2 days of meals, which are kept refrigerated until use. Balanced
for healthy fats, protein, and carbohydrates.

Prune Juice: 1 cup
Soy Milk/unflavored/unsweetened: 1 cup (more if necessary to thin out the batch
at the end)
Extra Virgin Olive oil:   cup
Flax oil: 2 Tbsp
Quaker Oats:   cup
Dried Prunes: 6 each
Dried Cranberries: Handful
Walnuts: Handful
Almonds; Handful
Flax Seed Meal: 2 heaping Tbsp
Fresh Spinach: 2 large handfuls
Acai packet/thawed in fridge day before (Trader Joes)
Whey Protein Powder/Vanilla/Body Fortress Brand: 2 scoops
Collagen Protein Peptides: 1 scoop
Raw Organic Whey Protein/Gluten Free: 3 scoops
Frozen Fruit: 2 handfuls of blueberries, strawberries, peaches plus 4-6 pieces of
frozen pre-cut banana.
Avocados: 4 small/ripe
Yogurt/unflavored/Full Fat: 4 heaping Tbsp
Garbanzo and Black Beans 1, 10oz can each/rinsed. Use 2/3 cup of the combined
beans which is enough for blending 3 batches
Pepper 1 tsp
Slice of wheat bread
Hard boiled egg-1
Fresh basil: Handful/torn
2 small cans of wild salmon w/liquid 5 ounces each OR
1 large can of white meat chicken w/liquid 10oz

The Vitamix blender works best if you layer starting from wet to frozen and then
top off with wet again like yogurt and avocados and additional soy milk if needed.
You may need to scrape down the sides midway through the process…And don’t
be afraid to run the blender on HIGH a couple of times to ensure that everything
is well blended and without lumps!!
No need to strain the mixture as it will be well blended and smooth.

There are micro nutrients that are stirred into the cups right before bolus feeding
A separate list of those and Amazon links for purchase will also be put up. These
ingredients impact various issues common to radiated patients, such as anemia,
immune health, and more.

A lot of the simple things we buy at Trader Joes. Good prices, and good quality. Other things we buy at a regular grocery store, and then there are then list of things we get from Amazon because of the price, or because chasing to a ton of health food stores to find it all is more time consuming than I care to engage in.
I'm trying to figure out how to get the message board to let me put up all this as a PDF, its not cooperating, and then some links to the Amazon specific things as well. So more later and a second blender recipe that takes a little more time but I alternate the two every couple batches
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General Board Jump to new posts
Re: Already having genital means no protecton for or cocoamber 01-13-2022 10:58 PM
Thank you Brian. Yes, I agree with that statement, all my books are non-fiction and all my podcasts, blogs, forums all focused on the techincalities of stuff. I am reading scientific journals much more in recent time, but I am also having a fear that I am broadening, diverging to say - a bit too much, that instead of focusing on one or few of the stuff that truly interests me the most, this is why I am saying I won't go into this rabbit hole of this one and trying to just get a shortcut answer, I did not expect someone like you to come honestly, but kinda perfect! smile grin

Thank you again though, kudos to you!
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Coping / Anger and Fear Jump to new posts
Re: Stressed embishop 01-12-2022 10:03 PM
Thank you for your reply and all that info, Brian. I’m generally in favour of our Cdn medical system as I’ve heard many horror stories about people not being able to get treatment because they can’t afford it, but in this case the waiting time is just unconscionable. At this point I’m resigned to waiting. Not happy about it, but i can’t do anything to speed up the process. I also had a gastroscopy on Dec 22nd (different surgeon) and I have a Feb 7th appt already booked to get those results (from 3 biopsies taken during that procedure). 4-6 weeks is our current wait time for biopsy results. Office closures over Christmas extended that to 9 weeks for the Nov 10th biopsy. But you make a very good point - I do not currently have another cancer diagnosis! I will be very happy when biopsy results confirm that.
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Introduce yourself Jump to new posts
Re: Squamous Cell Carcinoma STAGE 4 A Nels 01-12-2022 07:54 PM
Dear VRTZ

I was pointed to the following guideline off the OCF website to help with staging. Here it is.

https://oralcancerfoundation.org/discovery-diagnosis/stages-of-cancer/

Hope this helps.

Nels
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Introduce yourself Jump to new posts
Re: New to Group Nels 01-10-2022 07:52 PM
Peggy

Your preparations will definitely help! Good to hear dental work is getting done. I ended up with a lot of dental work my first year or so after radiation (crowns, root canals, etc) and it continues today. I believe if I had some of that fixed before radiaiton, it would have made it easier. I have not heard of Healios but if it works, use it.

Good job on temp back to work. I think following my previous life and habits as close as I could, albeit usually somewhat reduced levels, really helped my mindset and recovery. I worked part time through my treatment. I did a few hours every day. I went 2-3x per week to the shop. My employer was extremely supportive and flexible and I am blessed to have a job that can support this approach. I exercised daily in varying levels from surf, to jogging, to yoga, etc. The 2 weeks following my last treatment were the toughest. I am sure you have been advised of that.

I was able to return to full time work about a month after my last treatment. And, I would say maybe a month or so after that I felt physically strong again (90%+). Food was the slowest to recover for me. I can now eat most anything except spicy. But, I can now consume the blander Mexican and Indian foods. That took about a year. Alcohol still tastes terrible but I don't really miss it. It's almost always water for me now.

Except for Covid, I would have been comfortable with travel all except the last few weeks of radiation and the two-four weeks following it.

The best thing you can do right now is eat. Gain weight before Feb 8 and during those first few weeks of treatment. Most people feel fine for the first 2-3 weeks of treatment. Keep pounding the calories. I gained about 7-8 pounds between surgery and radiation treatment. I was trying and felt bloated most of the time but it helped for sure.

Some foods I recall that I was able to eat all the way through - eggs, avocados, green beans, bananas (except last few weeks), french toast, pancakes, protein shakes, ensure (vanilla and chocolate), pudding, jello, simple soups, pot pies. Get yourself a Vitamix or similar machine. I used to dump avocados into many of the smoothies and shakes I made.

Keep us up to date. We are all pulling for you. Stay safe and keep the faith.

Nels
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Medications, Treatment, Procedures Jump to new posts
Re: Radiation -my experience PLFC 01-08-2022 09:10 PM
Hello- I was just looking through posts as I am starting radiation in about 3 weeks. This was so helpful to see your experience. And yes know mine will be different, but nonetheless gives a sense of possibilities.

I hope you are doing well.

Peggy
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Symptoms and Diagnosis Jump to new posts
Re: Bump on Tongue ChristineB 01-08-2022 02:25 PM
Welcome to OCF, Keilani!

Im sorry to read you are going thru this terrible disease with your mother. Children that are their parents caregiver have a difficult job! My son helped me go thru it and even as an adult almost 15 years later, he still gets a little nervous walking thru a hospital hearing all the patients alarms beeping. Definitely NOT an easy task!!! Your mom is lucky to have you on her side. Make certain no matter how hectic it becomes, make sure to take time to walk away, clear your head, time thats devoted just for you.

Best thing you can do is to read, both thru posts here and on the main OCF pages. OCF is one of the very few medical type support public message groups thats not only monitored to ensure correct, up to date info is given, OCF members are anonymous which encourages more open communication. By educating yourself more about oral cancer you will become a better, more knowledgeable caregiver who can advocate for your mother when necessary. Im very glad you found OCF and posted.... we will help you and your mom as much as we can. Unfortunately, sometimes we can only answer so many things and refer members to their medical team to get further clarification. We try but please remember, were just like you... our members are just regular people without years of medical school, hands on clinical experience and training, etc. Our info is first handed.. What I mean by that is its obtained by either going thru it as the patient or being a patients caregiver.

If your mother has not yet gone for a second opinion, that would be a very good place to start. The top Comprehensive Cancer Centers (CCC's) are the preferred treatment centers for many who are lucky enough to have one nearby or can "commute" across country. The CCCs have the best of the best, top physicians who use a team based approach in state of the arts centers using the latest and most effective techniques and treatments. All the specialists meet together to discuss each case at whats called a tumor board. The patient is able to attend and ask questions there as well so it really can be a very important meeting usually treatment plans are addressed at one of the first meetings. If you would like the list of CCCs I can do a search or you and any other members can make use of the search function up near the top right of any page.

I have several important tips to help you and your mom...One of the biggest things I can pass along is to get your mother to eat and drink (water!!!). She may not feel like it but her sense of taste and ability to chew and swallow will probably be affected at some point making eating nearly impossible. If your mother is on the average or slim side she should try her best to put on a few extra pounds. Fighting cancer takes more out of you than people imagine!!! Getting thru treatments and recovery is NOT the time for weight loss but unfortunately almost every patient struggles with this and ends up suffering much more than if they took in at the very least 2500 calories every single day. Since your mothers treatments are likely to include surgery, radiation and possibly chemo as well those things require lots of extra calories plus your moms body is fighting the cancer and trying to rebuild the damage it creates. Especially important is eating all her favorite foods now, having seconds and desserts as well to hopefully build her up before beginning any treatment or surgery. Now is the time to eat and drink everything, all your moms favorites without concern about calories, weight, or worry too much about balanced nutrition... if your mom likes it then she should eat it. No way would anyone want to start out doing rads having cravings and then they're not physically able to eat the favorites. Plus most will temporarily have a very different experience when foods lose their flavor and taste burnt, like cardboard or nothing at all. Without somethings regular flavor that makes it very hard to eat too. She should drink a minimum of 64 oz of water every single day.... this is vitally important for those getting rads with or without chemo!!!

Another item to add to the every growing long list.... the dentist! Your mom should get a thorough check up at the dentist and if radiation is in your moms future then she should have fluoride trays made to protect her teeth. Any dental extractions needs to be done prior to treatment and waiting about 4-6 weeks afterwards to have her mouth heal before the cancer is treated. I know this can be overwhelming and seem like its impossible. Many patients and quite a few caregivers need help to get thru everything. Suddenly, out of the blue, a cancer diagnosis brings people to face their (or their loved one if a caregiver) own mortality which can be quite shocking to most. There is nothing to be ashamed of or embarrassed by if you, your mom or anyone else thats close needs therapy and meds to help with the anxiety and overwhelming worries. As with everything here.... sooner is better than later so if you think you and/or your mom needs that type of help ask her to ask at the treatment center, her docs or nurses and get that going asap. Sorry about giving so much info!!! Thats just the tip of the iceberg too... OC is quite a life changing experience that will surprise you with the positives that can come along with the diagnosis. Do your best to see everything in a positive way, the therapist if used would be a huge resource for this!!! The best thing I can share is to avoid focusing on negatives by limiting the time spent on things out of yoru control.... those what ifs will get you down every time so when you start thinking along those lines give yourself only a few minutes before you "change the channel". What I mean by that is to physically get up, walk away from whatever you were doing when the what ifs started and go do something positive. Once I learned this trick I felt so much better about my situation and was able to accomplish incredible amount of household chores Id put off. Instead of the what if worrying, Id go clean out closets, when I ran out of closets I had to find something else positive to keep me busy so I moved onto rearranging dresser drawers, going thru all the clothes me and my children hadn't worn for a while and donated them, rearranging the pantry, all my kitchen drawers and shelves. I even organized the garage and outdoor sheds. I wasnt the best at changing the channel so I needed varying tasks to hold my attention and focus on only the positives which meant I would read complex books with great plots, watching mystery movies that make you pay close attention, played wii with my teenagers and did alot more family activities too. I really hope I havent overwhelmed you with overloading you with alot of things the docs and nurses dont go into or if they do its briefly with how much they legally must tell everyone.

Hang in there!!!! You can lean on us, we completely understand what you and your mom are going thru and we can help make it a little easier.


PS... Its best when starting out as a new member to begin your own thread for your own specific topics. This particular thread is almost 2 years old. The original posting member hasn't been on here for many months so its highly unlikely you will receive an update or even though the odds are slim if an update reply is posted, comparing patients to each other never is an accurate comparison. Every single person is their own unique individual with exposure to a million different things in their lifetime, its not possible even if on paper the patients appear alike.... they arent! No two tumors are exactly alike, they could be anywhere in a persons head or neck areas with size, shape, and even different types of cancer impacting every single thing. Patients never will be the same age, sex, live in the same area, work the same type of job, have the same family history including exact number of children, family history going back decades exactly like another patient and thats just to name only a very few of the hundreds of things that will impact affect any cancer patient, how they adapt, recover, have a recurrence (hopefully not!!!). Hopefully you can better understand just how much of an individual each of us are. For now, I will leave your post here on the slim chance the person you asked questions to would reply. After a week or 2, I'll move it to its on its own thread to avoid confusion and it wont take away from whats already been written or confuse anyone reading 2 different members questions, replies etc as that can easily confuse our newer members.
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