6 Weeks Post - Mucous and High Throat Pain

Zbunnster
Zbunnster Member Posts: 7
edited June 2012 in Head and Neck Cancer #1
We are new to this CSN/Discussion board and thankful to have found it! My husband diagnosed in Feb. 2012 w Squamous Cell Carcinoma base of Tongue Stage 3. No surgery, but had 6 weeks of chemo and 7 weeks of daily Radiation. He is now 6 weeks post, but he is eating less and says that the mucous is keeping drinks from going down his throat. He has been on liquid diet and water since March 2012 (never had a feeding tube). Im worried because he says it gets caught and is losing more weight and also today says his left lung is hurting!! Could he have ingested mucous while coughing and gotten pneumonia? Does anyone out there recall how many weeks before they were able to move from liquid diet to soft diet? He is still on 100mcg of fentanyl patch.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome...
    Though I was STGIII SCC Tonsils, had them removed and went through a total of sixteen weeks of chemo and seven of that concurrent with daily rads...also no PEG.

    I can tell you that it does take several weeks for the cooking from the rads to minimalize.

    Somewhere around where your hubby is was when I started trying softer slippery foods.

    We are each different and the healing curve varies for each of us.

    I had Amifistine and feel that reduced any mucous and thick phlegm for me, never had it.

    There are some on here that have been prescribed a suction machine that helps a lot getting rid of the mucous.

    If you/he feels that you might have something going on, by all means communicate with your MD's.

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    Zbunnster
    Would keep a close eye on the lung pain, along with any other sign of pneumonia, such as a fever. Major complication if that happens.

    I was PEG-exclusive all thru treatment for NPC, and gradually weened myself off the Jevity a couple weeks post-tx, but about a month post-tx was starting to experiment with the likes of puddings and pancakes. At your husband's stage I was able to eat pancakes every day. Mucous issues during treatments was such that I had to carry a little spit bucket with me everywhere I went, and that is what I blame the tx nausea on. Would advise to let his ENT/C team know about this ASAP.


    kcass
  • alaskanjan
    alaskanjan Member Posts: 42
    #4
    Mucous
    Your husbands cancer course is so much like my husbands. Same diagnosis, basically same treatment, and same mucous issues. My husband was diagnosed last September and he started treatment, chemo, toward the end of October. After three rounds of chemo and a three week rest, he started his 33 radiation treatments. He finished those in Feb. and we went back for 3 month check in April. CT checked out ok and he had a biopsy on a node that didn't look quite right, it too was ok thank goodness. Anyway, he had a lot of trouble with the mucus too but that seemed to slow down a month or so after treatment. Unfortunately for him, he has had a devil of a time with thrush...tongue coated and has been on Diflucan three times and Nystatin rinse still. I do believe that he had/has thrush down his throat. He did not have a feeding tube and lost just over 1/5 of his body weight. He has maintained his post treatment weight by drinking Ensure mixed with milk to thin it a bit. He keeps trying to eat foods that look good, (they usually don't taste right to him though), but most often they just make his mouth sore and this is 4 months post last radiation. I would get him in to see his doctor right away to make sure there is nothing going on in that lung or with his throat. Is he weaning off of the fentanyl patch? My husband started backing down on it gradually, 75mcg for 4 patches, 50ncg for 6, then 25mcg until they were gone and then he was able to control the pain with Hydrocodone. I will keep you in my thoughts and prayers...I know what you are going through with all the uncertainties. We are taking a lot longer to recover than we thought we would but I know we will make it and I believe you will too.
  • Zbunnster
    Zbunnster Member Posts: 7
    #5
    Skiffin16 said:

    Welcome...
    Though I was STGIII SCC Tonsils, had them removed and went through a total of sixteen weeks of chemo and seven of that concurrent with daily rads...also no PEG.

    I can tell you that it does take several weeks for the cooking from the rads to minimalize.

    Somewhere around where your hubby is was when I started trying softer slippery foods.

    We are each different and the healing curve varies for each of us.

    I had Amifistine and feel that reduced any mucous and thick phlegm for me, never had it.

    There are some on here that have been prescribed a suction machine that helps a lot getting rid of the mucous.

    If you/he feels that you might have something going on, by all means communicate with your MD's.

    Best,
    John

    Great to hear!
    Thank you for your quick reply. My husband and I are sitting here wondering what to try next! And wholla, you and another send in what you can attest to first hand. Interesting abou the Amifostine, as it was never mentioned as an option, although Ron did not receive Cysplatin, he was given Erbitux, so that is probably why it was not offered.
    I suppose we are just hoping for quicker results and need to be more patient. Thank you for the hope! Best to you and congrats on your time post cancer!
  • Zbunnster
    Zbunnster Member Posts: 7
    #6
    Kent Cass said:

    Zbunnster
    Would keep a close eye on the lung pain, along with any other sign of pneumonia, such as a fever. Major complication if that happens.

    I was PEG-exclusive all thru treatment for NPC, and gradually weened myself off the Jevity a couple weeks post-tx, but about a month post-tx was starting to experiment with the likes of puddings and pancakes. At your husband's stage I was able to eat pancakes every day. Mucous issues during treatments was such that I had to carry a little spit bucket with me everywhere I went, and that is what I blame the tx nausea on. Would advise to let his ENT/C team know about this ASAP.


    kcass

    Spit Bucket!
    Funny you mentioned that! Yes, Ron's has the lil yellow bucket cup. He goes nowhere even in the house without it. He constantly has to cough up the mucous although much less than during radiation or up to 4 weeks post. Now just dealing with the pain of tongue and throat. I cant wait for him to be able to eat something besides the liquid milkshakes. He is scheduled for his 6 week CT and Chest Xray this Wednesday but we are calling his ENT MD tomorrow as who knows what can come of it. Thank you KCass! Congrats to you in survivorship and for your support!
  • Zbunnster
    Zbunnster Member Posts: 7
    #7
    alaskanjan said:

    Mucous
    Your husbands cancer course is so much like my husbands. Same diagnosis, basically same treatment, and same mucous issues. My husband was diagnosed last September and he started treatment, chemo, toward the end of October. After three rounds of chemo and a three week rest, he started his 33 radiation treatments. He finished those in Feb. and we went back for 3 month check in April. CT checked out ok and he had a biopsy on a node that didn't look quite right, it too was ok thank goodness. Anyway, he had a lot of trouble with the mucus too but that seemed to slow down a month or so after treatment. Unfortunately for him, he has had a devil of a time with thrush...tongue coated and has been on Diflucan three times and Nystatin rinse still. I do believe that he had/has thrush down his throat. He did not have a feeding tube and lost just over 1/5 of his body weight. He has maintained his post treatment weight by drinking Ensure mixed with milk to thin it a bit. He keeps trying to eat foods that look good, (they usually don't taste right to him though), but most often they just make his mouth sore and this is 4 months post last radiation. I would get him in to see his doctor right away to make sure there is nothing going on in that lung or with his throat. Is he weaning off of the fentanyl patch? My husband started backing down on it gradually, 75mcg for 4 patches, 50ncg for 6, then 25mcg until they were gone and then he was able to control the pain with Hydrocodone. I will keep you in my thoughts and prayers...I know what you are going through with all the uncertainties. We are taking a lot longer to recover than we thought we would but I know we will make it and I believe you will too.

    Alaskanjan
    Yes, our journey's are so similar and close in time. As I read your response to my husband Ron and you said its been 4 months and still hard for your husband to eat, he opened his eyes in disbelief but also in relief. Relief because this is "normal". I suppose we had hoped for a quicker recovery. He is still on the 100mcg F patch and intermittently has to use morphine for break through pain. His Rad Oncologist told him to go back on the Nystatin 2 weeks ago just in case he gets the thrush again. He was on Diflucan and Nystatin during Rad treatment but stopped when treatment stopped. Who knows, maybe he has Thrush down his throat and this is why his pain levels have increased the last week. Guess what? Hes going back on Nystatin tonight!! I guess it wont hurt! HIs MD said to introduce more texture based soft foods but now still on a shake of: Ensure, raw egg, Benecalorie, milk/or water and ice, 3 times a day. He weighed 162 pre-treatment and now at 128. It's tough to watch this happen yet must be tougher on the other side! Yes, we will get through it, just a journey in our lives!! Thank you for your response and support!
  • NeoTheron91
    NeoTheron91 Member Posts: 75
    #8
    5 months post
    Still have problem with mucous after finished radiation for Stage 4 NPC 5 months ago. It's now affecting my right ear so both ears are blocked. I used FLO Sinus care twice a day to clear up the blockage but frequently I will have to clear up the blockage. It's kind of new normal life style, not sure for how long I will have to be like that.

    Cheers,
    Neo
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    NeoTheron91 said:

    5 months post
    Still have problem with mucous after finished radiation for Stage 4 NPC 5 months ago. It's now affecting my right ear so both ears are blocked. I used FLO Sinus care twice a day to clear up the blockage but frequently I will have to clear up the blockage. It's kind of new normal life style, not sure for how long I will have to be like that.

    Cheers,
    Neo

    Hi Zbunn....we are almost alike ...
    your husband sounds much like me. I had stage III base of tongue with one lymph node cancerous (left side of tongue and left side for the lymph node)

    I too had radiation and Erbitux (no other type of chemo). I started tx on November 21st and finshed my last rad on Janaury 20th. I took longer due to my neck was soooo burned from the radiation (see my pic) that I had to stop / start tx several times toward the last few weeks. I also had a horrible reaction to the Erbitux in the form of an acne rash.

    I'm delighted you found this forum (though sorry you had to). You are also (I think) the first person who had stage III BOT and only had radiation and Erbitux (unless you had more that I did not read correctly).

    Now I would like you to know (and hopefully encourage your husband) I did not feel better for a SOLID MONTH after radiation. I slept for 30 days (give or take) rarely getting out of bed. My mucous did not clear up until mid April (that would be over 2 months) and then one day I woke up and it was as if it just had disappeared overnight. I still had mucous, but not like before. During my mucous issue I choked, gagged and had a heck of a time. I had a feeding tube from the very begining of treatments and still lost 71 lbs. I truly was a mess :) I had my feeding tube removed 2 weeks ago due to a 2nd infection but really removed due to I was not in need of it any longer. I began to be able to eat soft, wet foods around 4 weeks ago, so docs made the decision to pull the feeding tube, the infection came before my next appt. so we just pulled it in the ER.

    I was not on as heavy a fentynal patch as your husband is, but I think we were the same as far as meds. I took 5-6 Narco a day (that's hydrocodine 10mg and 500 acetaphedamine) (sp?) along with 4 advil every 4-6 hours!! I wore 2 fentynal patches at the same time 25mcg / hour and 12mcg /hour and replaced them every 3 days.

    So tell him to hang in there. It will get better. He is a better man than me if he had not had to have the feeding tube, that I will tell you. My tube was a saver for me!!

    I can tell you Ensure gave me the vitamins / nutrients I needed and I could drink those at close to room temp (slightly cool) mixed with skim milk and that did help me keep nourished...but it did not help the mucous.

    I too have heard of but never had the suction machine...but it sounds like it really helped quite a few people on this board.

    Whispered a prayer for your husband that he gets better sooner / faster and can get this mucous and pain behind him.

    Oh..I stayed on mine pain meds and patches up to 3 months past my last rad!! Still actually have a script for the Narco (2 a day) but only take them now when my teeth start to hurt sooo bad I can't eat. The teeth hurting is another side affect of rads (lower teeth) and I am seeing a dentist about that now, I got a script toothpaste and mouthwash to use (both presectiption) and that has helped some. I go for a deep "root cleaning" June 20th (I forget what they called this type of cleaning...a debri cleaning or something like that).

    Best,

    Tim
  • alaskanjan
    alaskanjan Member Posts: 42
    #10
    Zbunnster said:

    Alaskanjan
    Yes, our journey's are so similar and close in time. As I read your response to my husband Ron and you said its been 4 months and still hard for your husband to eat, he opened his eyes in disbelief but also in relief. Relief because this is "normal". I suppose we had hoped for a quicker recovery. He is still on the 100mcg F patch and intermittently has to use morphine for break through pain. His Rad Oncologist told him to go back on the Nystatin 2 weeks ago just in case he gets the thrush again. He was on Diflucan and Nystatin during Rad treatment but stopped when treatment stopped. Who knows, maybe he has Thrush down his throat and this is why his pain levels have increased the last week. Guess what? Hes going back on Nystatin tonight!! I guess it wont hurt! HIs MD said to introduce more texture based soft foods but now still on a shake of: Ensure, raw egg, Benecalorie, milk/or water and ice, 3 times a day. He weighed 162 pre-treatment and now at 128. It's tough to watch this happen yet must be tougher on the other side! Yes, we will get through it, just a journey in our lives!! Thank you for your response and support!

    Our Journeys
    I love your thought of this being just another journey in our lives. That does help to put things into perspective. It reminds me so much of another wonderful woman that we met in the radiation department who has had numerous surgeries and radiation for a colon tumor...she speaks of the "New Normal". Our journey in the new normal includes so many uncertainties. I feel empowered by you great attitude to stay positive and I hope that you and Ron will too...we can beat this evil or at least tame it. Had not heard about the Benecalorie but will look in to that. Anyway, like you two, we expected a much quicker recovery irregardless of what his physicians said to expect! The support of another that is experiencing the same problems in this moment of time is so nice to have and I hope that we can stay in touch through this discussion board.
  • Zbunnster
    Zbunnster Member Posts: 7
    #11
    alaskanjan said:

    Our Journeys
    I love your thought of this being just another journey in our lives. That does help to put things into perspective. It reminds me so much of another wonderful woman that we met in the radiation department who has had numerous surgeries and radiation for a colon tumor...she speaks of the "New Normal". Our journey in the new normal includes so many uncertainties. I feel empowered by you great attitude to stay positive and I hope that you and Ron will too...we can beat this evil or at least tame it. Had not heard about the Benecalorie but will look in to that. Anyway, like you two, we expected a much quicker recovery irregardless of what his physicians said to expect! The support of another that is experiencing the same problems in this moment of time is so nice to have and I hope that we can stay in touch through this discussion board.

    Great Attitude
    I figure that is all we have at this point is a Great Attitude, because then we are open to all that is coming at us!! Uncertainties for sure. We will be seeing our Dr. tomorrow because now he seems tolerant to the Fentanyl and Morphine because his pain level is 10+ again which is so awful because he cant eat his shakes. So hope tomorrow we get a new prescription so the pain can be relieved and he can get back to eating. Yes, as for the Benecalorie, go to Drugstore.com and order it from there (its the only place to buy it) and they deliver fairly quickly. Benecalorie, adds 330 calories and 7 grams of protein is unflavored and can be added to just about anything to add up those crucial calories to their drinks.
  • Zbunnster
    Zbunnster Member Posts: 7
    #12
    Tim6003 said:

    Hi Zbunn....we are almost alike ...
    your husband sounds much like me. I had stage III base of tongue with one lymph node cancerous (left side of tongue and left side for the lymph node)

    I too had radiation and Erbitux (no other type of chemo). I started tx on November 21st and finshed my last rad on Janaury 20th. I took longer due to my neck was soooo burned from the radiation (see my pic) that I had to stop / start tx several times toward the last few weeks. I also had a horrible reaction to the Erbitux in the form of an acne rash.

    I'm delighted you found this forum (though sorry you had to). You are also (I think) the first person who had stage III BOT and only had radiation and Erbitux (unless you had more that I did not read correctly).

    Now I would like you to know (and hopefully encourage your husband) I did not feel better for a SOLID MONTH after radiation. I slept for 30 days (give or take) rarely getting out of bed. My mucous did not clear up until mid April (that would be over 2 months) and then one day I woke up and it was as if it just had disappeared overnight. I still had mucous, but not like before. During my mucous issue I choked, gagged and had a heck of a time. I had a feeding tube from the very begining of treatments and still lost 71 lbs. I truly was a mess :) I had my feeding tube removed 2 weeks ago due to a 2nd infection but really removed due to I was not in need of it any longer. I began to be able to eat soft, wet foods around 4 weeks ago, so docs made the decision to pull the feeding tube, the infection came before my next appt. so we just pulled it in the ER.

    I was not on as heavy a fentynal patch as your husband is, but I think we were the same as far as meds. I took 5-6 Narco a day (that's hydrocodine 10mg and 500 acetaphedamine) (sp?) along with 4 advil every 4-6 hours!! I wore 2 fentynal patches at the same time 25mcg / hour and 12mcg /hour and replaced them every 3 days.

    So tell him to hang in there. It will get better. He is a better man than me if he had not had to have the feeding tube, that I will tell you. My tube was a saver for me!!

    I can tell you Ensure gave me the vitamins / nutrients I needed and I could drink those at close to room temp (slightly cool) mixed with skim milk and that did help me keep nourished...but it did not help the mucous.

    I too have heard of but never had the suction machine...but it sounds like it really helped quite a few people on this board.

    Whispered a prayer for your husband that he gets better sooner / faster and can get this mucous and pain behind him.

    Oh..I stayed on mine pain meds and patches up to 3 months past my last rad!! Still actually have a script for the Narco (2 a day) but only take them now when my teeth start to hurt sooo bad I can't eat. The teeth hurting is another side affect of rads (lower teeth) and I am seeing a dentist about that now, I got a script toothpaste and mouthwash to use (both presectiption) and that has helped some. I go for a deep "root cleaning" June 20th (I forget what they called this type of cleaning...a debri cleaning or something like that).

    Best,

    Tim

    Tim
    I read your post to Ron my husband and I couldnt keep from crying. Wow, this thing we are dealing with is our living hell that I call a journey, because I know we will make it to the other side and be better for it! But for now, its a daily chore to help Ron get water and his Ensure shakes down when his pain is at a 10+ (this part only started 5 days ago)which is odd because he is 6 weeks Post Radiation. Just got off the phone with his Chemo Oncologist and he doesnt understand either why the pain is worse. He said he could add a 50mcg patch to the current 100mcg patch but we will wait to see the Radiation Oncologist tomorrow for his opinion and see down his throat to see if he may have a Thrush infection down his throat (we will see). Tim, you talk about teeth pain? Did that only start after you started eatin more than liquids? Ron says it hurts way back and under his tongue when he swallows, I imagine it feels like a bad Strep throat and how it hurt to move my tongue to swallow. I can only think that the Radiations also have something to do with not only burning but affecting the muscles there. Will ask those questions of the Rad MD tomorrow. I am so relieved to read that we are still in the normal range for eating more than Ensure/Liquid Diet. We can only hope that in a few short weeks, we can wake up and feel BETTER! And EAT! Thank you for sharing! Means so much to hear it from someone that has walked the same shoes!;)
  • nedsky39
    nedsky39 Member Posts: 6
    #13
    Skiffin16 said:

    Welcome...
    Though I was STGIII SCC Tonsils, had them removed and went through a total of sixteen weeks of chemo and seven of that concurrent with daily rads...also no PEG.

    I can tell you that it does take several weeks for the cooking from the rads to minimalize.

    Somewhere around where your hubby is was when I started trying softer slippery foods.

    We are each different and the healing curve varies for each of us.

    I had Amifistine and feel that reduced any mucous and thick phlegm for me, never had it.

    There are some on here that have been prescribed a suction machine that helps a lot getting rid of the mucous.

    If you/he feels that you might have something going on, by all means communicate with your MD's.

    Best,
    John

    HPV....and partners?
    Hello....I've been on this site on and off for past 3mos...my husband just finished his Rx for Stg 3 SCC BOT....33 IMRT and 4 chemos....he's quite sick now but he's only a wk out. I like the picture of Skiffin16. Both of you look so strong and healthy. I'm hoping my love and I will be there someday also. I have a question regarding the HPV virus...for anyone ...I have been married 5yrs..we've been togther 7. I've had several PAP's for HPV all negative and never had an atypical regular PAP. I have heard that Johns Hopkins is advising partners of pt's with this HPV cancer to get the Guardasil vaccine even though they may be above the age limit as I am....way above! I asked our medical oncologist....she said it may just be a study they're doing but it isn't a RX regime/law yet. I asked if my hubby could still have HPV she said , they are treating the CA not HPV....so is that a yes? And could I get it then give it back to him?....I just don't understand this whole HPV thing....the last thing I'm worried about is me getting it.....a positive cervical Pap is so much easier to Rx than what he has. Thanks for any info....this is the toughest situation....blessings to all.

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