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Mouth sores, nausea, and YUK!!!!!!! again

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Posted 10/29/2005 8:50 AM (GMT 0)

Hi guys,I did call the onc office Thurs, and I had to go down there Fri. for blood work. Needless to say, my wbc had dropped dangerously low. The reason for feeling so bad, my skin feeling like it was going to peel off, and the mouth sores. I eat ice all the time for the mouth sores and it helps some, but, in general I like to eat ice to supplement for water at times. After the b/w, the nurse wanted to look at my tongue. She said they were all over my tongue, inside my mouth, and in my throat. So, she called in a r/x for Magic Mouthwash, Yuk!!! and Fluconazole 100mg,(pills)/Diflucan(brand name). This mouthwash says to swish and swallow every 4 hrs as needed. To me that just sounds nasty, but, my problem with that is when it hits my stomach, it automatically makes me nauseaus, and starts diarrhea. I think I am just going to try to swish and spit since i have other meds for it in pill form. The nurse said it was more a solution to numb the sores than anything else. Now onto the next prob, my wbc. I had to have a shot yesterday, one today, and one Sunday, to bring my counts back up. It too makes me sick. I am not getting Neulasta, actually, i don't know what it is, but, I will find out. The inj, causes a lot of abdominal cramps, and more back pain. However, that is some of the side effects it says is normal. You know how that goes. They name everything they can think of to list. From one extreme to the other. I know some of the sick and meds don't mix w/ the crohns, so i have a double whammy to deal with. eyes But, will take it as it comes, with my chin held as far as I can get it. After todays inj, I am coming home and going to try to rest. I really feel exhausted this am. You guys have a great weekend. Prayers to all,

Posted 10/29/2005 1:00 PM (GMT 0)
Carol:  I can sympathize with you.  I have experienced all of the above.  Make sure to use the mouthwash, even if you spit it out, it will numb the sores.  The diflucan will help too.  AS for the neupogen shots, take tylenol or advil before the pain hits, especially if you know you get pain.  I am gathering you are on taxol or taxotere.  I also get the dry skin, expecially the feet.  Make sure to use a good moisturizer.  I like the ones with shea butter.  Any time I can help, just ask.
Posted 10/29/2005 4:06 PM (GMT 0)
Carol: I am so sorry that you are having all of the side effects. The "magic mouthwash" will help numb and heal the blisters that you have in your mouth and throat. The reason that they told you to swallow it is to cover those throat blisters. My onco mixes several different flavors that you can get...grape, orange and cherry. I personally like the grape. Maybe you could try and eat a little something before you use the mouthwash...jello, pudding..to just have something in your stomach. I had horrid muscle aches when I was on the taxol. WalMart has a product called "batheraphy". It is really inexpensive and works great. Just fill that tub w/ hot water and dump a couple of packets in as the tub is filling. It not only will help w/ the muscle aches but also the dry skin.

Since your counts are so low, please avoid crowds. Also, don't let anyone that has even a tiny cold come into your house. You don't need anything else on top of what you are dealing with.

Rest this weekend and I hope that you will fine things better on Mon.

Gentle hugs...Deb

 

Posted 10/31/2005 9:06 AM (GMT 0)
HAPPY HALLOWEEN EVERYBODY................Hi Vicky , I am still on the a/c and cytoxan. The next round will be Taxol. The drying of the skin wasn't the prob, it was just so sensitive to touch that was painful. I always use baby oil after a bath, and a moisturizer in between times. I haven't tried any with shea butter though. Must try that. I also take my pain meds before the inj, however I still get severe cramps and what feels like spasms in my back Oh, I love your "Feelin a little batty" creation. Thanks for the info. Carol
Deb, I have the cherry mouthwash. I still think it is nasty though. I am still using it cause those blisters on the tongue and mouth are very painful. I know what you mean about the muscle aches, I am pretty stiff this am. With a low wbc I am trying my best to stay away from people that may give me something, but, my daughter is in high school. You know that is a germ breeder. She does well with washing the hands, and anything else she can do not to carry anything home to me. I told her to "LYSOL at the door please". LOL Anyway, thanks for all the info. Any thing at this point is helpful to me. Carol
Posted 10/31/2005 12:51 PM (GMT 0)
Carol- I am so sorry you are in such a rough spot.... just think, it WILL be over at some point and you will heal. I was told my a friend who went thru chemo for hodchkins to use a baking soda toothpaste to avoid sores, and since I used Mentadent already, I didn't have to change my routine, but I can tell you I never had a mouth sore. Maybe gettting some of that tooth paste would help? or maybe gargling with baking soda and warm water? i sure hope it helps.... my prayers are with you!
big hugs
stefanie
Posted 10/31/2005 2:13 PM (GMT 0)

Hi Carol! Happy Halloween to you also!! Ask your onco for meds for your spasms. I am currently on Navelbine and Herceptin, weekly. (2 yrs now) I also get muscle spasms in my lower back, legs, well lets just say in all of my body muscles. I take 2 different types of meds for this problem. Also hot, hot baths. Have you tried gargling and swishing w/ hot salt water? Salt is a wonderful natural healer and shouldn't be too painful to use.

I know what you mean about kids bringing germs home. Until about 2 weeks ago, my dd and 3 granddaughters and I lived together (ages 11, 5 and 2). With their friends in and out of the house it is almost impossible to stay "germ free". We just have to do the best that we can.

Hang in there. This will soon be behind you. How many more treatments do you have left?

Gentle hugs...Deb

Posted 10/31/2005 8:42 PM (GMT 0)
Carol,
I am so sorry you are having such a rough time. I did not get mouth sores but I did get thrush after almost every treatment.
I remember when I was on the Taxol it hurt if my husband even laid a hand on me. A very hot bath always made me feel better that and a pain med. of course.
There is only so much we can do to avoid the germs but they are every where so just do the best you can do. I work in an Elem. school and was that ever fun trying to stay away from germs. The kids were great and knew I need to be extra careful. I am in a special education classroom and these little sweethearts understood better then some of the adults that I ran across.
It will be over before you know it. I can't believe it has been 14 mos. since my last chemo. Praying you feel better soon.
Take care
Donna
Posted 11/1/2005 8:38 AM (GMT 0)
Hi Stefanie, I had already thought about the warm salt/baking soda mouthwash. I picked up 2 boxes the day before they gave me that nasty mouthwash. The meds i was given seem to have cleared most of it up. Thanks for the response, May God Bless

Deb, I have some flexaril for the spasms, but, not working so well. However they seem to have eased up a bit. If it starts again, I will call and ask for something else. Seems like almost all my muscles cramp too. But the back is the worst. Thanks for the info, May God Bless

Donna, I am glad that you are 14 mos. out of chemo. And hope you are feeling much better. The Taxol? Does it make you feel worse than the a/c? Cause that's what I will be on next, once a wk. I really do dread that every week thing.
I can't imagine working in an elementary sch., but, you are right, lots of kids are more knowledgeable than adults. You know when you counts are down, they tell you to stay away from crowds, people w/ colds, etc. Now how do they expect us to do that, when we are always in a doc off. I had an app yes, and I think everyone was coughing and blowing their noses. I grabbed a bunch of Kleenexes and covered my nose and mouth, lol. Cause these people weren't even covering theirs. Any way, prayers to you, and May God Bless
Posted 11/1/2005 9:55 PM (GMT 0)
Carol,
I found the Taxol to be so much easier than a/c. I won't lie I did have a lot of pain but hot baths and pain meds helped but I was less tired and just felt so much better. You can do it. It soon will be over. I think of you every day and pray you feel better. If a person can tell from a letter, you sound better then a few days ago. I hope you feel better every day.
I don't know if I asked you or not ( I think I did but the mind does not work like it use to ) what do you take for your crohns? Do you go in to remission? sorry all the questions. Just wondering.
Take care and God bless
Donna
Posted 11/2/2005 7:41 PM (GMT 0)
Carol

I just started Taxol yesterday and as Donna said I do feel achy but not too bad yet, nothing like having a shot of Neulasta that is much worse. I bet the shot they gave you was Neupogen I have had that too and I had very few aches compared to Neulasta.

Im so sorry you are having so much trouble, it looks like my posts after my first chemo I had alot of complications too. If you ever have time go back and look at my posts from Aug and Sep I felt like all I ever did was complain. I was sick for over a month. I got the mouthwash too but could not stand it so I just suffered with them. I cant imagins all of the pain you have had to endure because of the crohns and now this my heart goes out to you. Sending you my prayers and a gentle hug.
Posted 11/5/2005 8:57 AM (GMT 0)

Bernadette, it was Neupogen they gave me, and I'm with you on the mough wash. I am glad the Taxol is, so far, so good. I still have 3 more A/C to go, and then Taxol. I am still hoping that some of this will throw the crohns into some form of remission. Cause believe me, one doesn't like the other. At this point, I just feel very weak, fatigued. Thank you for remembering me in your prayers, as I will you.


Donna, I was on 6-mp for the crohns, with pentasa, Cipro. Now I am only on the pentasa, but it comes thru this bag whole, so really what is the use in buying it. I surely am not getting anything off it. Ever since I was diagnosed w/crohns '76, I think I may have been in remission maybe twice. Then the surg had to keep going in, either for active crohns, or obstructions, which I still have, and adhesions. I have had 12 major surgs for active crohns alone, not counting the obs. I can't take Methotrexate, due to liver damage, or Remi, cause I have no veins. In my docs report, he states,"that no more surg is to be done in abdominal, rectal, or vaginal area, w/o extensive med treatment first." Cause he says I won't come off the table. So I just keep on keeping on, as I know, God is with me all the way. Living with this 30 yrs is a long time, since when they found mine, it was severe. Keeping you in my prayers as well, hope you are having a good day!!!!

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