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Dry Mouth

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

No matter how much my mom drinks and uses her mouth rinse she has her days that her mouth and throat feel very dry. Does anyone experience this?  She tends to dehydrate very easily so I get worried. We make sure she drinks plenty of fluids. 

NANCYL1
Posts: 238
Joined: Jun 2012

Hi Epicc:

First of all, how are you, yourself,  doing?  Is your mother home?  (I have missed some of the posts.)

I have been getting Rituxan infusions, a set of 4 every six months.  Two more this year.  I remember once being very thirsty and having a dry mouth.  Just kept drinking water.  This was not as bad, of course,  as what you describe.

Dentists have products for dry mouth, as I recall.  

In the past, way before having lymphoma,  I had a bit of a dry mouth off and on and took Slippery Elm, lozenges, made by Thayers.  I doubt that it is heavy-duty enough for your mom.  It says on the label:  Elm Bark, 150 mg., Oral demulcent.  For temporary relief of minor discomfort and protection of irritated areas in sore mouth and sore throat.

I hope things improve soon for your mom.

Nancy

 

 

NANCYL1
Posts: 238
Joined: Jun 2012

Hi Epicc:

First of all, how are you, yourself,  doing?  Is your mother home?  (I have missed some of the posts.)

I have been getting Rituxan infusions, a set of 4 every six months.  Two more this year.  I remember once being very thirsty and having a dry mouth.  Just kept drinking water.  This was not as bad, of course,  as what you describe.

Dentists have products for dry mouth, as I recall.  

In the past, way before having lymphoma,  I had a bit of a dry mouth off and on and took Slippery Elm, lozenges, made by Thayers.  I doubt that it is heavy-duty enough for your mom.  It says on the label:  Elm Bark, 150 mg., Oral demulcent.  For temporary relief of minor discomfort and protection of irritated areas in sore mouth and sore throat.

I hope things improve soon for your mom.

Nancy

 

 

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Thank you for your response. Yes! My mom is homes he came home a week ago. This is the first time since November. She did not want to go to rehab again so we made it happen.  She has a 24 hour aid (very expensive).  Just being home she looks so much better and her appetite has improved. She is schedule for her fourth round of chemo this Thursday and Friday.  We are very nervous because we have yet to have a good experience. This time we have demanded she gets her chemo on time!  How are you Nancy? How   are your Rixtuan infusions going?  I hope you are doing well?

NANCYL1
Posts: 238
Joined: Jun 2012

Hello Epicc:

Good, your mother is home and looks better and her appetite has improved.  Home, if possible, is the place to be, I think.

Sorry to hear that she has not had a good experience as yet with the chemo.

I had a bad reaction during my first infusion of Rituxan.    The doctor decided I was allergic to it and gave me Tylenol, Benedryl, and steriods with Rituxan, the following visit.  It worked.  The steroids have me hopped up for a day or so, talking a lot and inspired to do housework.   After that, I am somewhat tired for 2 or 3 months.   Otherwise good results at this point.

I hope things are better for your mom on Thursday and Friday.

Nancy

 

 

tall floridian's picture
tall floridian
Posts: 87
Joined: Dec 2011

Epic- I too remember being thirsty all the time when I was on my 6 rounds of chemo plus 2 maintence chemo's. I'm currently in remission of 4th stage lymphoma - haven't had chemo for almost a year now- gaining weight and doing fine Praise God. I still feel thirsty and drink lots of fluid (mostly water) Lymphoma is cureable - I'm testimony to that - prayer plus following doctor's orders did it. Keeping a positive attitude helps too. God bless you both - you're in my prayers. Steve

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Steve.  Thank you so much for your prayers.  We have had a very tough few months. My mom has been drinking plenty of water and eating better. They changed her chemo to Rituxan and bendimustine. I believe this has mad a difference for the better.  She has been told her Lymphoma is not cureable but can reach remission.  It has been nice just seeing her feel better after what she has been through.  Prayers to you.  Emily

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hey Emily.  I'm glad your mom is home and you are seeing some improvement.  Regarding dry mouth, maybe some hard candy (sugarless is available) will help.  Also, it might help if you use a humidifier?  Just some thoughts.

Hugs - Jim

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Jim,

 

How are you?  We have seen the most improvement since October.  As you know we almost lost her last month.  Her prognosis was very poor.  She received her chemo while she was unconcious.  As a matter of fact, she has never been awake for her chemo yet.  I'm all over the doctors to make sure she receives her chemo on time.  Her cancer seems to be very tricky because it is in the blood (intravascular lymphoma (very very rare).  Anyway, they changed her chemo to bendamustine/ rituxan and she seems much stronger.  Even her sodium is under control with no meds.  I'm keeping my fingers crossed for this month.  I think I will go and get a humidifier today.  Great idea!  I also believe the prayers that I received on this site, made a big difference.  I received alot of positive energy.  I cannot thank you and everyone here enough!  Love you all.

Hope you are doing well.  I saw your post about a vacation in France and eating crepes.  I say you start organizing a trip for everyone! I'm sure everyone on this site could use it. Cool

 

Hugs,  Emily

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Emily.  I have to win the big lottery first to make the trip!  However, if I did, I would certainly invite you guys :).  My sister who passed about a year ago and her husband went to France on their honeymoon many years ago and they frequently talked about how much they enjoyed the crepes you could buy from street vendors while they were there and of course there was wine and cheese, etc...

I hope your mom continues to do well and the humidifier helps.  I am doing well for the most part.  I still get tired and sleep alot but  things are improving I believe.

Hugs - Jim

GKH
Posts: 300
Joined: Jul 2012

I am on a very intensive Rituxan regimen. At first I had a real problem with dry mouth. I eventually discovered it was the pain killers they gave me after my surgeries. I stopped them and it went away.

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

My mom is not on pain killers, but she does take alot of medication.  I'm sure that has alot to do with her dry mouth.  Unfortunately, she cannot stop taking them at the moment.  How are you doing?  I hope things are well. 

 

Emily

illead's picture
illead
Posts: 524
Joined: Aug 2012

Hi Emily,

     I hate to even mention this but I had a friend under hospice care and they had small (I think they were foam) thingys on a sucker stick that we swabbed her mouth with to take the dryness away.  I wonder if something like that would help.  Becky

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Becky,

I remember the nurses using them when she was last in the hospital and she could not have anything.  She did not like them.  I think she will be okay as long as she uses her rinse and drinks enough fluid.  Between the chemo and her medications she just can't help the dry mouth sometimes.  On a positive note she got her chemo today. Rituxan/Bend.  And other dose of Bend tomorrow.  It was nice that she finally received her chemo as an out patient.  How is Bill doing?  Is he feeling well?  We are getting a snow storm tomorrow.  Not looking forward to it. 

 

illead's picture
illead
Posts: 524
Joined: Aug 2012

Hi Emily,

     What a relief for you.  Look what improvement she has made already, I just know she will continue to progress.  Does she know how many she doesn't even know are rooting for her?  Bill is still doing great.  Besides the cancer he has excellent health on his side so we are fortunate.  He has his rit maint on the 25th, then off to Mexico for 3 weeks, I know I know, you're playing your violin Cool We will have email there and I will continue to monitor CSN

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

I'm glad to hear Bill is doing well.  We're all shooting for a lottery paid trip to France here ;).

Buen viaje a México y no beber demasiado tequilla!

illead's picture
illead
Posts: 524
Joined: Aug 2012

Okay no tan mucho tequilla para me. ha ha.  I've been reading about the France trip and would love to go too.  Let me know when that lottery money comes in.  In the meantime, think we better head South, France could take awhile.  Our best to you always.

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Very Nice Becky and Bill.  Enjoy Mexico for 3 weeks!!  You both can use the time away I'm sure!  Very nice.  I just booked my flights to Aruba for August.  I hope things stay the same with my mom and I get some time away.  We just go for 1 week.  I'm so happy to see her doing well.  She keeps asking about the Bend/Rix.  She wants to know if it will work.  She is too funny.  I have told her how sick Bill was and how well he is doing now.  Have a great trip Becky. 

 

Jim and I will keep you posted on the France trip.  I'm playing the mega million and hoping to win so that we can all go!!

 

Hugs,

Emily

Alive and Kicking's picture
Alive and Kicking
Posts: 5
Joined: Feb 2013

I experienced severe dry mouth from Radiation therapy, luckily it only lasted for less than a year. My husband had throat cancer and consequently lost all of his salivary glands in 1998, recently all of his teeth required removal because no matter what he did he could not prevent tooth decay. He manages his dry mouth by using Biotein Oral dry mouth gel, it is the only product that lasts long enough especially at bedtime. He cannot go anywhere without a bottle of water and has to use sauces or gravy on all of his food. It was difficult at first but a nessesary ajustment that has become a way of life.
I wish you and your mother the best and a healthy outcome.

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