ROLL CALL 2022 - First Posting January 1, 2022
Comments
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Allow me to add another expression of thanks to Skiffin16 for sharing information with me. Skiffin16 helped me think through my problem. Last night I acted and tried to make appointments with a gerontologist as a primary care giver and a cardiologist for certain specialist care. My thinking was that while Skiffin16 gets continuity of care from the initial treating oncologists, I have found it very difficult to be accepted by an oncologist for long-term follow-up of treatment many years ago. The oncologists I meet naturally want to be treating cancer and not treating long-term adverse effects of treatment. Not enough of long-term survivors seem to exist for a specialty in long-term cancer survivorship to evolve. Now I'm looking for a gerontologist who would at least be familiar with multi-organ degenerative changes.
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Hey Matt, I have not checked in some time. I see the thread is not very active these days either. Anyhow, I appreciate the work you do for all. I am still here almost 13 years out. Been mostly good but the last few been a severe challenge. I am down in SW Oregon not far from you. Love it here. I have issues that are not common and not much help available but I press on. I have kids and grand kids I wanna see grow up.
Take care and keep up the good work
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MGC.
Nice to hear from you. I have not been my “old-self” on the H&N forum over the past few years. If you aree ever in the Albany area, please let me know. Maybe we could meet. It does happen on occasion. You can still Google “CivilMatt meets Kteacher” and see the pictures associated with that hook-up. Anyway, nice to hear from you.
Civil Matt
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Hi there.....jackflash 22 calling..I'm still here...head and neck surgery 2013. Followed by radiotherapy. ......surgery for endocrine small bowel cancer 2015.....removal of squamous cell carcinoma from face.....bouts of pneumonia 3 times...leak in oesophagus but refused peg tube. But still going strong. Think I'm running on will power.
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Hey jackflash22. Glad you are "still here". Congratulations on being a member of our select society of cancer survivors. Sounds like you are one tough individual. Hang in there and keep on a keepin on. And, BTW, will power is perhaps the strongest of all. Take Care
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READING BETWEEN THE LINES HERE...........but is this the beginnings of a ROLL CALL for 2023? IF NOT???
If so, here's my check-in: JKINOBAY, 73 yr old, live in Mex, Docs&Treatment in AZ, FIRST SCC- left tonsil, minor surgery w/ 35 IMRT & 7 CISPLATIN Chemo 2007. PET's NED (No Evidence of Disease) until Spring 2022.
SECOND SCC, right tonsil, TORS & RND w/30 IMRT August, 2022. Plenty of things to whine about but I'm doing very well, all things considered. Most recent PET indicated minor area of uptake most likely due to SECOND round of radiation. I have had the LIFETIME Max Dose of radiation now TWICE in some smaller overlapping areas of my H&N thus an unusually extended time to heal. BUT, I'm still here. Will have MRI in a month or two to monitor the area in question.
Biggest single issue at present is a pesky fistula that opened up Dec 2022 in the RND surgical scar from May 2022. Swab cultures indicate no infection. Still a minor seep at this time. Hoping it will close completely on its own. If not it may require minor (hopefully) surgery.
TAKE CARE EVERYBODY. GET WELL/STAY WELL.............and a special shout-out to all of "US" that do "OUR" best to help and comfort others. Many of "US" have passed on. But "WE" salute "THEM" nonetheless.
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jkinobay and jackflash22,
I am also a member of the “I'm still here” club but, quite honestly I am not as fashionable as I once was on my beloved H&N forum. Jkinobay you are important to me since you are one of the original 18 members which participated in the first Roll Call. I am glad you are still humming along and jackflash22 you really are a trooper. I hope you are doing well inside and out. You deserve some good times. As for me, I want to do more but, I am struggling to keep up. Oh well, what will I do? I want to finish the updates to the RC 2023 and get it out to everyone who enjoys it here on our little forum (which I always believed it to be one of the best forums). Enough said,
Civil Matt out!
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Hi Matt
I've swung by here on occasion and added my $.03, (inflation) always hoping to build hopes for the ones battling and also hoping to run into you. I've always enjoyed your flashes of humor as much as I looked forward to them.
All is well with me, no signs of cancer and I hope it stays in the history books with no intent to start another chapter. It does seem that along with age comes body parts who can't keep up. What Im getting it is all the years as a cabinetmaker and truck driver has caught up to me and occasionally I need shots in my spine in an attempt to keep nerves in my legs from preventing painless mobility. The shots don't work as fast as I would like and the doctor has told me to have patience. I responded with "I'm not a doctor or dentist so I have no patients" .
I will now go back to my corner and will wait for another opportunity to add a few comments.
Enjoy the day
Jeff
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I am looking for dental health specialist for my brother who had oral cancer 3 years ago. Had radiation and surgery. he has only a few "black pegs" of 6 front teeth left. How can we get specialist? he is "surviving" but would love to eat! has lost weight. If America can send a man to the moon , why can't i find the top specialist in USA? His story is alot like seeral of you all listed above. He is 60 yrs old. I am not sure how to enter this Roll- Call dialogue, hence, i simply started commenting in this spot. Can someone reach out to me if you have any information? tdstevens49@gmal.com
Thank you.
Silverbelle3789
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Whoops- i see my email above- typo- tdstevens49@gmail.com
Hi to Duggie88 & Mike metz. it seems you are using a feeding tube?/ My brother has rejected this avenue because he thinks we will find dental help. His surgeons and oncologists just tell him "no teeth implants, no gum ridge for dentures" UGH! surely in USA there is SOME SPECIALIST who is finding a certain degree of success(?) so a person can enjoy chewing again??
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TO wbcgaruss:
You are able to eat carefully?? please tell me how- i want to grind the food for my brother so he can at least taste the flavor but he says he want to chew the food. What to do? This is USA none of you on Roll Call have had a visit with TOP DENTAL SPECIALISTS? ugh... i want to find help for him.
thanks
Siverbelle3789
tdstevens49@gmail.com
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Silverbelle3789,
Location really helps with suggestions. I know my husband has gone to the University where he was treated and they referred him to the Dentistry Department of the same hospital. In our case, it was Jefferson University in Philadelphia.. if you are close, they understand the treatment and precautions that come with the patients previous treatments.
Otherwise I might suggest if you are close to a major medical university to look into their options and experience.
Hope you find the help he needs!
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Silverbelle, welcome to the CSN H&N forum. I am sorry your brother is dealing with this dental situation. Your brother I assume had an ENT and a cancer team with him during treatment monitoring him. You should be able to contact them and they should be very aware of providers in your area that have experience with H&N patients and dealing with tooth loss that so often comes with the territory. The dental people you would see would want to see his radiation records and work closely with his radiation oncologist as per where the fields of radiation were applied and the strength of the radiation around the lower jaw and upper palate area before they would recommend anything and give you an evaluation. You say he has some back pegs and a few front teeth. I know some folks on here have had tooth implants where they implant an anchor into the bone and the artificial tooth goes on top of it. These are expensive but worth it. Your brother may not get all the teeth he needs to be implanted as there are various approaches to follow-up dental care and replacement such as dentures, partial plates, and using dental implants as anchor points for partial plates, etc. But you are first going to need to find a provider to take his case and get a full evaluation so they can decide what to do and what they can or cannot do. See below there may or may not be problems doing certain kinds of dental repair hence he needs an evaluation before starting anything.
Can you get dental implants after head and neck radiation?
If radiation was applied to the lower areas of your body, you could be a good candidate for dental implants. However, if radiation was applied to your neck or head, you may not be eligible for dental implants since radiation can negatively impact your jaw. Mar 16, 2020
All this is not a fast process but you have to start somewhere and today you did.
As I earlier recommended to you about seeking the advice of your brother's care team if they do not have a good recommendation for you seek out local dentists and orthodontists and call them if necessary to find ones that specialize in this kind of care that will work closely with his radiation oncologist.
As others have recommended you can also seek out major hospitals in your area or do you have a major teaching hospital in your area?
Here is a link to a dental office with some info about dental implants they are in the Dallas-Fort Worth area--
In the meantime, your brother needs to get nutrition in to stay healthy and at a healthy weight. I know he wants to eat of course but in the meantime, he may just be limited to softer foods like noodles, fine ground meat, mashed potatoes, and mashed anything with a lot of butter or gravy to help it go down and give flavor. Also, have him drink a Boost VHC once or twice a day to get his weight up to a desirable level.
Also, you may get more responses on your inquiry if you make a new posting which is not hard to do. Instructions below--
To post a new discussion topic on a discussion board:
- Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.
- Mouse over ‘Discussion boards at the top of the page
- Locate the discussion board of your choice.
- Click the Blue ‘Add topic’ bar on the right side of the discussion board page.
- On the ‘Create Forum topic’ page, enter a title into the ‘Subject’ field and your message into the ‘Body’ field.
- Select save draft as you type to save your posting.
- When you are finished and satisfied with the wording click Post Topic
- Also, keep in mind that once posted you will have a week to edit your posting.
I am also going to add here a list of weight gain recipes and suggestions from past postings. I hope this info helps in some way. Also, prayer helps in any situation for guidance and comfort. Recipes below--
Wishing You the Best
Take care, God Bless-Russ
Silverbelle3789 Welcome
The 2 times I had substantial treatment for cancer I had a feeding tube and both times when it was finished it took a while to gain the weight back. I think now I am pushing to be a bit overweight but I found through my experience it is good to have a little reserve. To gain weight, for now, don't worry about any certain I recommend eating food that has a substantial amount of calories and or fat also. Like bacon and eggs, or sausage and eggs and or pancakes, waffles, etc. with lots of butter and syrup. Cheeses are good to add also such as cheese topping on a bowl of chili. Also after my last bout out of the hospital, I had lost a good bit of weight also and had a bit of trouble putting it back on so I purchased Boost VHC (Very High Calorie) and was drinking one in the morning with breakfast including trying to eat at least 3 meals a day of some size. This boost is 530 calories per 8 ounces serving and you can drink more than one a day till your weight picks up. This is a quick easy drink to pack in 530 calories. Usually, the Boost VHC is mostly available online unless you can find it locally mostly regular boost is in the stores. Here is a link showing the product made by Nestle https://www.nestlenutritionstore.com/boost-very-high-calorie.html I bought it by the case on eBay but you can buy it online in many places like Walmart online etc.
Also eat a bunch of snacks like candy, cupcakes, peanut butter crackers, etc. you can fit one in anytime your sittin around. Also, nuts like peanuts, cashews, almonds, etc. have a lot of calories and are even good for ya.
Also here is a weight gain recipe that 2 ladies shared that I found a long time ago related to cancer and gaining weight afterward--
Deb,
So sorry I’ve taken so long to get that receipe for your dad! I checked with our nurses and here it is:
1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)
Mix together in a bowl then mix with a mixer for one minute until it begins to thicken. This receipe makes 4 servings. We use it to help individual’s we serve who are under weight to assist in gaining weight. As you can see…it is very rich and full of calories etc. Let us know how your dad is doing!
Karen
These Recipes and Tips Are From Debbiel0 on CSN H&N Section
And here is another communication shared recently with me by a lady on this forum concerning weight gain after cancer treatment and I am sure she would be glad if I would share it--
- Coffee cream ( 18%) 1 cup 480 calories
- Coconut milk 1/3 cup 150 calories
- Greek style yogurt 1 cup 270 cal
- 2 tbsp Ground Flax seed 100 cal
- 3 tbsp Hemp Hearts 170 cal
- 1 tsp nut butter 100 cal
- 1 tsp honey 100 cal
- banana 80 cal.
I would mix all of the above into a shake for my husband. It makes about 3 - 3 1/2 cups and 1300 calories.. he would sip on it all day. Then we would make him soft eggs or oatmeal to top off the calories for the day. Jello or pudding and ice cream are also another easy foods to slide down.
Using coffee cream when making soups, or sauces, cooking oatmeal in it, using it for puddings. Is an easy way to boost calorie intake. The Hemp Hearts and ground Flax can be expensive. If you have access to Costco, they are reasonably priced there. ( at least in canada that is the way it is)
Use honey as much as you can in tea or coffee, or just in warm water.
I think the best advice I got from our nutritionist was to think outside the box and add cream or greek yogurt to what ever you can think of. Throw in a couple of tbsps of flax or hemp seeds to soups, your boost, hot cereal cooked in heavy cream. Mashed potatoes with heavy cream and lots of gooey gravy is always good too.
Hope some of these ideas help. Another well balanced change from boost is Soylent. I cant remember the calorie count, but it is a very good meal replacement.
I know I am kind of rambling... but hope some of these ideas help, or at least give you a variety. It is hard to get excited for a meal that is same as the last one!
Split pea soup and baked beans with honey are great for calories..
The flaxseed and hemo hearts dont change the taste all that much..just a way to sneak another 100 calories in. I had never ventured into that type of food either. My daughter in law is super healthy, and introduced me ( young ones, ya know!)
Almond butter or cashew butter is just another alternative to peanut butter. Change up the taste a bit.
I have a long list if food allergies, no dairy, no cheese, no chocolate, so finding calories was really tough for me. Example, geek yogurt can be up to 270 cal, my non dairy yogurt is 60 calories. So, when my husband was going thru his treatment it was actually fun for me to keep finding new things to make for him. Cheese is another good source of calories, melt it and add it to soup, potatoes.
Take care Russ. Maybe sit down and try to enjoy a slice of pumpkin pie with whipped cream!
Also Here Are A Few More Postings For Weight Gain From The Forum
Flyinhigh says:
High calorie
I use a powdered mix from GNC called 1340. If you followed their mixing instructions and used 4 large scoops with water and you supposedly get 1340 calories. I mix it half or third strength with 12 oz. of milk and figure I get 500-600 calories, plus a lot of protein. You can try this and if you don't like it or can't tolerate it GNC will take it back and refund your money. It comes in vanilla, chocolate or strawberry(my favorite).
Grandmax4 says:
calorie
I used a drink called Scandishake, bought it through Amazon. It's really good, can't remember the calorie and protein, I made it with crushed ice and milk in a blender, delicious
Drivingdaisy says:
Drinks
Only drank Orgain, organic and small amount of natural sugar. Decided no more chemicals in My body. I just poured it in My feeding tube. I still drink it but the plant based. Became lactose intolerant. Good stuff. I'm more of a naturalists but to each their own. Going on 4 yrs NED, so did something right.
Suzj says:
if you want to mix it up..
If you get the urge to mix it up, go with a high Protein Boost, mixed with a carnation instant breakfast, and a few scoops of Ice Cream - that'll up your calories
In Closing:
I too and most folks on here had trouble swallowing and getting some foods down but it will come just be patient but for now eat what goes down easiest with a high calorie count. You may have to add liquid as you eat whatever you prefer. Try donuts and coffee. Eat in small bites and be patient. With my 2 cancers and 2 radiations to this day, I am thankful I can still eat but it is just a slower process. but in your case, it will probably come back completely. get with your speech therapist and do your swallowing exercises. I assume you have had contact with a speech therapist on this journey because most of us have it is standard procedure in this Head & Neck cancer game. if not contact your doc and get one assigned to you.
Lastly I highly recommend that you Do Not have your PEG removed until you can have a stable weight or have some slight gain in weight going on but it is your choice. I know after my first cancer they would not remove my PEG tube until I could maintain a stable weight for 2 weeks.
Be patient and Eat, Eat, Eat.
I hope some of this rambling helps you in some way-Wishing You The Best-Take Care-God Bless-Russ
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Rollcall update for donfoo.
Hey guys! I'm still around and living life large. Crossing over 10 years. Not complaining but "senior" moments are popping up and the side effects of the rads and chemo are relatively non-existent. Recently, I experienced my first time backing away from doing something due to potential fitness complications. But that was on a week long underground expedition to the Hang Son Doong caves in Vietnam. https://www.lonelyplanet.com/articles/explore-hang-son-doong-in-vietnam
My tastebuds came back fine and never lost the thyroid. When I met with the rad folks doing the mapping I said "Watch out for my parotid glands!". I guess they listened.
There is some fibrosis in the neck that reminds me to stretch more often. The thing that is the most reminding of this ordeal is my teeth are messed up. I elected to have a couple removed before the treatment and did not followup so the rest of my teeth decided to take a journey moving around. Today, I look like a hillbilly as I'm still sort of reluctant about ORN. But it's time to get them sorted out.
Again, glad to see many old faces around. Good for another year.
And Matt, I'm still looking for that coffee chat when i pass by. Most of the time I get into Ashland and Medford for supplies but back across the border. Maybe this year we make it up the coast.
Don
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Don, so glad to see you doing so well. You are doing exceptionally well and I am glad for you and certainly hope your good health continues. I think you came through treatment really well with minimal effects, congrats. Congrats also for your longevity out of treatment, very good.
My treatment started in January of 2013 so we are pretty close on treatment dates. At the time I was a lurker reader only but I got so much knowledge and inspiration from folks like you, Matt, Hondo, Skiffen, long-term survivor, and so many more, it was a lifesaver. I finally joined after my second cancer in 2018.
Yes, teeth issues are a problem I am at the point where I maintain and do my best to stay stable with the condition of my teeth and keep what I have. I see the dentist every 6 months.
I have gone through the HBOT for a previous tooth extraction.
Sorry, you missed out on the cave trip but using your good judgment and playing it safe is probably the better option.
Wishing you good health and God's Blessings moving forward Don.
Take Care, God Bless-Russ
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