I insisted on a PEG tube placement and get half my calories through tube feedings. the rest (2 meals) with soft foods. I try to have at least one food or beverage that I look forward to. I also exercise most days so that I have an appetite. My "new normal".
I insisted on a PEG tube placement and get half my calories through tube feedings. the rest (2 meals) with soft foods. I try to have at least one food or beverage that I look forward to. I also exercise most days so that I have an appetite. My "new normal".
Thank you for your response, I am literally living on nutrition drinks, I had a peg tube for 3 years, it was a nightmare. But only way to get meds down is with thick drinks, even tiny thyroid pill is difficult. Can't wait for Dr appointment at Vanderbilt.
Thank you for your response, I am literally living on nutrition drinks, I had a peg tube for 3 years, it was a nightmare. But only way to get meds down is with thick drinks, even tiny thyroid pill is difficult. Can't wait for Dr appointment at Vanderbilt.
Meds often can be crushed and dissolved in water, added to the tube with a syringe. But, but check with your pharmacist as there are a few meds which cannot be taken this way.
Meds often can be crushed and dissolved in water, added to the tube with a syringe. But, but check with your pharmacist as there are a few meds which cannot be taken this way.
Yea I know, did that but once fluids went through the tube into my stomach, then it would gush out the wound area,?? Couldn't ever get that resolved, feed tube removed.
Hello @susankeel316 Perplexing statement you used to join our group. Seven years. I think many of us have had some issues for years but an open wound and swallowing issues at this point for a tonsil tumor seems extreme to me. It might be time to have a cancer clinic or doctors to have a look.
Swallowing is more complex than most of us imagine. It only takes one or two out of roughly fifty small muscles to malfunction to cause difficulty. Radiation commonly used in cancer treatment often damages these muscles, particularly in your case aimed at the swallowing center, the tonsil pillar.
As for taste loss this long, I think that is not common as well. I had similar cancer and while not a fun couple of years, most functions returned to normal.
We cannot of course diagnose you as most of us a patients as well. We talk of our experience and collectively can point others in a direction they may not have considered to live better in this fight.
Did you have radiation and chemo or just one? Is there a nearby treatment center you could find to investigate this further?
I just finished Radiation and Chemotherapy. Initially I had lingual tonsillectomy. After surgery the pet scan recognized still active throat cancer . The surgeon recommended a second surgery. After the pain I went thru with my throat I decided on Treatments. 35 Radiation and 7 Chemotherapy with Hydration twice a week. My weight went from 215 before surgery to 170 after treatments. The radiation of course makes your throat feel like pins and needles and the sores in the back of my mouth . They inserted a feeding tube for nutrition and hydration . I’m in the recovery mode and have to train myself to swallow.
I also lost my taste after the Lingual Surgery hoping it comes back. My hearing also got worse during the treatments. Using the feeding tube I wasn’t hydrating my throat and mouth with water and had nasty dry mouth . That breaks up the flem in more throat .
I just finished Radiation and Chemotherapy. Initially I had lingual tonsillectomy. After surgery the pet scan recognized still active throat cancer . The surgeon recommended a second surgery. After the pain I went thru with my throat I decided on Treatments. 35 Radiation and 7 Chemotherapy with Hydration twice a week. My weight went from 215 before surgery to 170 after treatments. The radiation of course makes your throat feel like pins and needles and the sores in the back of my mouth . They inserted a feeding tube for nutrition and hydration . I’m in the recovery mode and have to train myself to swallow.
I also lost my taste after the Lingual Surgery hoping it comes back. My hearing also got worse during the treatments. Using the feeding tube I wasn’t hydrating my throat and mouth with water and had nasty dry mouth . That breaks up the flem in more throat .
Sounds like you've been through some serious challenges. Did they remove any of your salivary glands? Or is your dry mouth a result of surgery and or treatment? I am recovering from tongue cancer surgery 2 years ago. I know that getting my one remaining salivary gland to work was a huge challenge. I used my homemade pickle juice. I would touch the pickle to the healthy, non surgical part of my tongue and that would trigger saliva. I also used Xylimelts mints that stick on your gums to keep my mouth moist at night. Some folks use them in the daytime, too. Available at Wal-Mart and Amazon. I used baking soda rinse and had a container I used as a spitoon. That was great for healing and later during treatment. Take care.
Yes not the diet I recommend !! I lost taste after lingual tonsils removal. During that procedure they did biopsies throughout the throat. The dry mouth is partly from radiation , I’m a mouth breather even before all this and woke up dry mouth. Definitely worse now. I have been dehydrated from throat pain wasn’t drinking enough which didn’t help. I was using Biotene for dry mouth. I found drinking water hydrated my mouth and throat the best . i’ve been done with treatments since last Friday starting to feel better and starting to eat solid food slowly .
How do you cope mentally, I feel like I am losing what's left of my brain? Head feels like an empty bucket, and bone and muscle loss is depressing, lost 100lbs and had skin hanging,
@susankeel316 try and find little wins each day, I am still here 9 years later, all I can say is boost is your friend on those days when you can’t eat or have no appetite, I suggest the powder form the pre made ones are awful. I did talk to a psychologist who specialized in pain and surviving cancer, it helped me perhaps something like that can help you as well.
@susankeel316 try and find little wins each day, I am still here 9 years later, all I can say is boost is your friend on those days when you can’t eat or have no appetite, I suggest the powder form the pre made ones are awful. I did talk to a psychologist who specialized in pain and surviving cancer, it helped me perhaps something like that can help you as well.
@sean1971 thank you and I have survived on Boost for 7 years now, I am going a different route I think, I have lost all cartridge in all my joints so movement is almost impossible. So instead of more surgeries and drugs I am going with my Chiropractor, saw my XRays today and the damage Radiation and chemo did to my neck,throat, thyroid, tongue. But Dr told me my esophagus was damaged and would have to be put under again, It is my esophagus but not needing surgery, my spine has pushed forward and has almost closed off my esophagus. I am excited about a new way to spend the rest of my life, without addictive drugs and more surgeries.
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I insisted on a PEG tube placement and get half my calories through tube feedings. the rest (2 meals) with soft foods. I try to have at least one food or beverage that I look forward to. I also exercise most days so that I have an appetite. My "new normal".
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8 ReactionsThank you for your response, I am literally living on nutrition drinks, I had a peg tube for 3 years, it was a nightmare. But only way to get meds down is with thick drinks, even tiny thyroid pill is difficult. Can't wait for Dr appointment at Vanderbilt.
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Helpful -
Hug
1 ReactionMeds often can be crushed and dissolved in water, added to the tube with a syringe. But, but check with your pharmacist as there are a few meds which cannot be taken this way.
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Helpful -
Hug
1 ReactionYea I know, did that but once fluids went through the tube into my stomach, then it would gush out the wound area,?? Couldn't ever get that resolved, feed tube removed.
-
Like -
Helpful -
Hug
1 ReactionI just finished Radiation and Chemotherapy. Initially I had lingual tonsillectomy. After surgery the pet scan recognized still active throat cancer . The surgeon recommended a second surgery. After the pain I went thru with my throat I decided on Treatments. 35 Radiation and 7 Chemotherapy with Hydration twice a week. My weight went from 215 before surgery to 170 after treatments. The radiation of course makes your throat feel like pins and needles and the sores in the back of my mouth . They inserted a feeding tube for nutrition and hydration . I’m in the recovery mode and have to train myself to swallow.
I also lost my taste after the Lingual Surgery hoping it comes back. My hearing also got worse during the treatments. Using the feeding tube I wasn’t hydrating my throat and mouth with water and had nasty dry mouth . That breaks up the flem in more throat .
I was diagnosed with HPV Virus
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6 Reactions7 years out of treatment but the side effects are still present?
Sounds like you've been through some serious challenges. Did they remove any of your salivary glands? Or is your dry mouth a result of surgery and or treatment? I am recovering from tongue cancer surgery 2 years ago. I know that getting my one remaining salivary gland to work was a huge challenge. I used my homemade pickle juice. I would touch the pickle to the healthy, non surgical part of my tongue and that would trigger saliva. I also used Xylimelts mints that stick on your gums to keep my mouth moist at night. Some folks use them in the daytime, too. Available at Wal-Mart and Amazon. I used baking soda rinse and had a container I used as a spitoon. That was great for healing and later during treatment. Take care.
-
Like -
Helpful -
Hug
3 ReactionsYes not the diet I recommend !! I lost taste after lingual tonsils removal. During that procedure they did biopsies throughout the throat. The dry mouth is partly from radiation , I’m a mouth breather even before all this and woke up dry mouth. Definitely worse now. I have been dehydrated from throat pain wasn’t drinking enough which didn’t help. I was using Biotene for dry mouth. I found drinking water hydrated my mouth and throat the best . i’ve been done with treatments since last Friday starting to feel better and starting to eat solid food slowly .
-
Like -
Helpful -
Hug
2 Reactions@susankeel316 try and find little wins each day, I am still here 9 years later, all I can say is boost is your friend on those days when you can’t eat or have no appetite, I suggest the powder form the pre made ones are awful. I did talk to a psychologist who specialized in pain and surviving cancer, it helped me perhaps something like that can help you as well.
-
Like -
Helpful -
Hug
3 Reactions@sean1971 thank you and I have survived on Boost for 7 years now, I am going a different route I think, I have lost all cartridge in all my joints so movement is almost impossible. So instead of more surgeries and drugs I am going with my Chiropractor, saw my XRays today and the damage Radiation and chemo did to my neck,throat, thyroid, tongue. But Dr told me my esophagus was damaged and would have to be put under again, It is my esophagus but not needing surgery, my spine has pushed forward and has almost closed off my esophagus. I am excited about a new way to spend the rest of my life, without addictive drugs and more surgeries.