Please help me

[Joppette]

Hi friends,

I wrote a bit on today's Air, but wanted to share more details here and ask for advice. MOUTH SORES! Five years ago, I got them but only after round three, so it was a short amount of time, and even though they were awful, I was able to tolerate it.

I have just finished round one, and they started tonight. I can't believe it. I have no idea what to do. I've been doing the baking soda/salt solution since day one, but it's obviously not working. I've lost a ton of weight because of my appetite issues, and now this?

I am dealing with a lot of pain as well in so many different areas, and am noticing that the neuropathy is starting in my left hand finger tips.

If this gets much worse, I am afraid I'll have to discontinue the chemo. I really don't want to have to do that.

If anyone has any advice, or encouraging words, please share them here.

I so wanted to face this with strength and an optimistic attitude, but how do you do that when your mouth is full of open and extremely painful sores? To me that is the worse side effect of the chemo.

Anyway, just a cry out. I had moody internet this past week, but it seems to be working for me right now. Am thankful for that. I am thankful for any advice you can give me on the other too.

Judy in MI

[ginnyde]

Judy, I have no advice, so wish I did. But I wish I could climb thru this wire and encourage, encourage, encourage. Please try and think of this as a bump in this journey which will get you to a successful destination. I know, easy for me to say.

My only suggestion is on the phone to your dr. asap and get some high tech medicine to ease the discomfort of these sores.

You can do this Judy, just keep the goal in site.

((((HUGS)))))

[Joppette]

Thank you Ginny! I appreciate your support. I did find out from my Gilda friends that there are a few things I can try. First off, get rid of my whitening toothpaste, and switch to a mild baking soda paste. They also said to stop using my electric brush (which brushes quit vigorously) and use a soft hand held brush instead. They gave me advice on a perscription to ask the doctor for too. So that all made me feel like I can get a handle on that issue.

My pain doctor doubled my pain medications. I guess it's a good thing I am a pain med "whimp". He had me on such a light dose because of that, but now when I really need it, I can bump it up to twice what it was before, so that will really help with the pain.

As for the neuropathy? I didn't know it but there is a medication they can give me to help with that progression as well! Yeah. I'm so encouraged.

So with all of that - I feel much better. I just never had to deal with issues this bad before, and had no idea how to go about dealing with them.

MI Judy

[eric byrne]

Hi Judy,

I am so sorry to read of all thats currently going on in your life,this post op period has certainly been an uphill struggle for you,I just want you to know that there is not a day that passes that I dont I think of you and wish that things could be otherwise for you.I, and your many friends here all wish you a speedy recovery.

[RandyW]

never dealt with them but wish you a speedy and thorough recovery from this little setback!!!

[nikkala]

Like Katie, I've had people use the magic mouthwash. The pharmacist can mix it. I believe it is Maalox and Lidocaine. Praying for you to get relief Judy.

[jaminkw]

Judy keep posting and getting all the info the group has to offer here. I do remember using the majic mouthwash with earlier chemo. Fortunately the baking soda/salt with Sensodyne toothpaste worked pretty well with Taxotere. It was very important, though, that I eliminated acid food like tomatoes, lemon and lime and spices.

Judy in KW

[dianew]

Judy - I am late to see this and not much I can add to what the others have said. I am so sorry you are having such a rough go. I got the mouthwash at the hospital and it helped a great deal. I really missed using my electric toothbrush though. As for the neuropathy - it is nice to know there is something they can give you to help. Why don't they tell us these things at the start?? I hope by now you are feeling better. I know it is important to keep on top of the pain meds rather than letting it get away from you. I am keeping you in my thoughts and prayers.

Diane

[kesnh]

I never had general mouth sores but i got Thrush all the time. Use to freeze yogurt sticks and keep chipped ice on hand.

I had ( have) neuropathy in my hands. I keep one of those stress ball things with me and squeeze it when i feel my hand stiffening up. I also found warm parafin wax treatments to really help. outside of that I stocked up on solo cups and put the china dishes far away. I also have quiet the collection of fat pens.

Stay strong my friend and know that you are in good company.

Kathy

[D&TM]

Judy,

my mom has been very lucky & the baking soda wash has helped her. But, we were told that some patients find licorice to help. There's something in the compound that helps coat & heal the mucous cells in the mouth?!

On another note I am sorry for your struggles. Your words of encouragement really helped me alot when I started this journey with my mom & for that I am eternally grateful. I only wish I could give some of that encouragement back to you. But, I feel the only thing I can do is send you my well wishes & let you know you are thought about regularly.

Best wishes

D&tm

[curlysue50]

Judy:

I am a bit late to post to this, but I also had bad neuropathy to thumb and fingertips of both hands during my carboplatin/taxol chemo. I finished October 2011 after 4 rounds. Neuropathy got progressively worse with each round. It is now May 2012 and the"tingle"/loss of sensation is definitely fading. I still lose my grip once in awhile handling small objects (some larger ones, too), but I can sometimes forget about it because it has gotten so much better. Our bodies can do miracles in healing themselves from the tough times they go through with treatments. I hope you are doing better. Your encouraging words have been helpful to me!