| Joined: Aug 2016 Posts: 11 Member | OP Member Joined: Aug 2016 Posts: 11 | I have to thank all of you, I have gotten so much information from reading through many of the threads here. I am in week 3 of radiation after a partial glossectomy for a squamous cell on the side toward the back of my tongue. I had no idea this type of cancer is so prevalent, but those of you who've gone before me sure have some wonderful support and advice.
I'm down to liquids and having a hard time swallowing, so though I'm trying, there's no way I'm getting the recommended amount of calories and protein, or water, though I'm trying. I've started gagging over the mucous since I can't swallow the Mucinex pills any longer. I see the wonderful support nurse once a week, tomorrow I'll tell her the trouble I'm having. I gag even with small pills and have just quit taking anything, even my BP meds. I really don't want to have to stop part way through and start again if I can help it!
We live in an RV and normally only spend a couple of months a year here in the Denver area, but obviously that plan isn't working this year! I was hoping we could move on shortly after the rads are finished, but seeing all the posts about needing medical follow up for various issues weeks and even months past treatment makes me a bit anxious. I guess we'll see what happens with that!
Again, thanks for all the helpful information, you're all heroes for having gotten through all this hassle. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Wynter! Glad to have you here. We will do our best to help you get thru this.
Im sorry you are starting to struggle with your swallowing. I know its not easy but you must continue to keep trying to swallow every single day. When you know you arent meeting your daily minimums for water and calories, it will soon catch up with you. Make sure you have a discussion with your doctors about everything you wrote here. They will know you are struggling by your weight. Not taking in at least 2500 calories and 48-64 oz of water every single day will start making you feel pretty lousy too. In my opinion, your intake is the most beneficial thing you can do to help get thru this as smoothly as possible. I cant stress enough how vitally important your intake is! When you talk with your doctor, make sure to ask about getting a prescription to get extra hydration a few times a week. This is usually dont in the chemo lab. You will be amazed at how much better you feel after a 2 or 3 bags of fluids.
Many medications come in liquid form. Your doc must write the prescription for it to be in liquid form. Its also usually alot more expensive. If the meds are pills, ask your pharmacist if it can be crushed. Some patients will crush then mix the medicine with applesauce to make it easier to get down.
If you are not able to take in enough to get adequate nutrition you may need a feeding tube. This should be discussed with your doc too. You might be able to get away with a NG tube. Thats a feeding tube that goes thru your nose. Its very thin and requires no surgery like a PEG tube would. A NG tube can also help with your medicine as the meds can be crushed and dissolved in water then thru the tube it goes. Just be very cautious and check every medicine you plan on crushing with the pharmacist as some time release meds cant be crushed or they may cause the patient to overdose.
Hang in there!!! You are half way there and this is usually about where most patients begin to understand OC and its treatments are brutal. Unfortunately, rads will get progressively more difficult as treatments continue. The first 2 or 3 weeks after treatments end are the hardest. This is why its so important to have a long talk with your doc and get yourself back on schedule with your intake. If it goes on for too long, you will start feeling worse and worse. Ive been thru this and its awful which is why I try to help other patients avoid it
Best wishes with everything!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | I, too, extend a warm welcome to you.
It is important to discuss with your medical team the problems you are having with swallowing -- food, liquids and meds. Your medical team need to have a clear idea of what the situation is so they can advice you on what to do and make adjustments to your medications if need be.
My husband needed to put his pills in a pill crusher (you can buy one from Walmart or GNC, the health food store, or from Amazon) and then in apple sauce before he could swallow them. Store-bought apple sauce is fine but I made my own so that I could add variety like apple sauce made from different kinds of apples, apple-pear sauce, etc. My husband needed a PEG tube from about the third week of radiation on. At our hospital, most head and neck cancer patients are required to have a PEG tube irrespective of whether they need it or not. In my husband's case, it helped him maintain his weight, hydration and nutrition all through radiation and after. ChrsitineB is right to emphasize the importance of hydration. On the couple of occasions when my husband was dehydrated, he felt like death but felt better very quickly once he was given intravenous hydration at the hospital.
Talk to your pharmacist often as they can give you information and insight into how some meds should/can be taken when a patient has swallowing difficulties. They are an important member of the treatment team.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Aug 2016 Posts: 11 Member | OP Member Joined: Aug 2016 Posts: 11 | Thanks so much for all the help. I did talk to the RO nurse (who's wonderful) today at length, and was told about crushing many pills, just not Extended Release ones. So I got some 400mg Mucinex tablets and crushed one earlier and put in a couple teaspoons of yogurt, and feel better. I started this morning feeling nausea (not the gag/heave thing from the mucus, but actual nausea) and the doc prescribed a sublingual anti-nausea pill to use as needed. Apparently a small dose of Ativan/Lorazipam sublingually can deaden some of the gag reflex, so I'll try that if needed. I also crushed a Zantac 'cause I was feeling acid indigestion, which seems to have helped. I had a craving for Egg Drop Soup from our favorite Chinese joint, and once it cooled a little the warm, slippery stuff just went down so well. So we brought some home, and I had another 16oz tonight. I doubt it has a lot of calories or protein, but darned if I didn't feel much better after having something actually to eat!
Anyway, thanks for all the help, tomorrow is the last day of my third week. My husband keeps reminding me I'll be on the downhill slide now! | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Wynter,
I am so glad to hear you have been able to find a way to take your meds and to have the Egg Drop Soup. It's little things like these that help keep the spirit up during treatment. Way to go!
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Good job on the soup!!! If that works for you keep going with it. All that extra fluid helped to perk you right up. I used to eat won-ton soup broth every day after I was about 2 months post rads. The soup is pretty much just like bouillon water.
Be careful with other Chinese foods. I embarrassed myself in a buffet restaurant when my mouth was on fire from trying to eat a bite of vegetable lo mien. There must have been some kind of hidden spice in it that burned my sensitive mouth. Chocolate (or white) milk does wonders neutralizing spicy foods plus the calories dont hurt either!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Wynter - adding my welcome. You've gotten some great advice here from some of our star posters. All I can add is support and good thoughts beamed a mile high. Please keep us informed as you progress. You're a member of our family now.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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