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  #1  
Old Sat Nov 30, 2013, 06:02 PM
Diver down Diver down is offline
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Location: Miami FL
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Mouth sores/throat

I've heard that one of the difficulties eating after the BMT is that your mouth/throat become sore or worse. Thus, sustenance by iv and ensure. Is that something that always happens to varying degrees or is it possible not to experience this? Pain meds helpful? Any information and advice appreciated. ( Starting 2nd cycle vidaza Monday and waiting for match..target is February for BMT.) Thank you.
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  #2  
Old Sat Nov 30, 2013, 09:00 PM
Whizbang Whizbang is offline
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75% experience Mucositus, I experienced it pretty bad, to the point where I couldn't talk...

I love chocolate milk, and chocolate ensures, so I drank 3 of each per day...

250 calories x 3, and 130 calories x 3 (750 + 390) = or 1,140 calories per day...

I was on IV nutrition for a day and a half, but developed a fever, and they took me off of it as a precaution...

Water was (for me) almost impossible to drink with the mouth sores, but anything chocolate and smooth, like milk and ensure was soothing to drink through a straw, and along the side of my mouth, kind of like if your mouth was wired shut... very slowly...

And yes I was on demand morphine (missles I called them) with a trigger...

Mine was due to the combination of radiation and chemo... In the end (now) it was part of the process... rinse with the saline and bicarbonate soda that they provide as well as biotine (like on the commercials), brush as long as you can with the softest baby toothbrush you can find (or they provide)...

I had to stop brushing when the skin was falling off the side of my mouth... (during the healing process), my platelets were 13, and I couldn't risk the possility of bleeding...

Sorry for the graphic response, but you should know what to expect (worse case senario)... Hopefully your experience will be better....

Best regards.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Sat Nov 30, 2013, 11:43 PM
Neil Cuadra Neil Cuadra is offline
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My wife had mucositis during her transplant too. It was the worst side effect of her radiation treatment. She had to get her nutrition by IV and she relied on Dilaudid (hydromorphone) for the pain. Ice and popsicles helped a bit too. Luckily, she was asleep much of those days.

The positive side is that it was temporary. Once your mouth and throat heal, you can go back to eating and drinking and it no longer hurts to swallow. By the time my wife left the hospital the mucositis was a bad memory and her new life as a cured patient had begun.
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  #4  
Old Sun Dec 1, 2013, 07:04 AM
SLB SLB is offline
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I too suffered badly with mucositus! I didn't have radiation and was told it was mainly due to the methotrexate (not sure if this is right name.. I am abit fuzzy on the details!).. The only thing I would swallow during those days was my tablets & that was done only after pushing my pain meds (Iv push button & also a continuous drip as well - fentanyl I think,) with tears running down my face. I wouldn't even swallow my own saliva, I used a tissue to spit it out! They IV fed me & seemed to do it to most people there! But once my white cells started coming back it cleared up surprisingly quickly.. Was awful and even with all the drugs it was excruciating!! I had the added bonus of the pain sending my bp soaring, then my head would feel like it would explode & either the pain or high BP would cause me to vomit! Believe me, that was awful! But they soon become drug hazed memories!! Good luck.. You might be one of the lucky ones!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #5  
Old Sun Dec 1, 2013, 10:49 PM
Cheryl C Cheryl C is offline
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I wonder if the following could help those suffering from mouth ulcers/mucositis. I found it really good a couple of years ago when I was getting mouth sores more often:

http://www.coconutresearchcenter.org...%20pulling.htm

I have also tried this for a sensitive tooth and it really worked.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #6  
Old Mon Dec 2, 2013, 07:24 PM
mausmish mausmish is offline
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I had mucositis the full length of my digestive tract. It is awful but temporary, about 10 days. I didn't require iv nutrition - lived on liquids and dilaudid for pain and did lose weight.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #7  
Old Sat Dec 7, 2013, 12:17 AM
Heather8773 Heather8773 is offline
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My husband only had one mouth sore on his inner cheek that healed quickly. His Drs and nurses scratched their heads about how well he did but he drank as many fluids as possible. That helped keep his mucus lining moisturized. He did all the saline rinses on time and took this herbal mouth wash tonic w him that his dentist reccomended. All the ingredients are natural.
When your mouth, eyes or nose get dry and you have little to no WBCs you are creating a warm moist breeding ground for bacteria to form an ulcer. When things are being properly moisterized and fluids are flushing these areas they are also flushing or cont moving Bactria away. Google biotien gum and it can explain better then I can.
Also not to overstep but religion is important to me and I am so thankful for the prayers that were said for my husband.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #8  
Old Sat Dec 7, 2013, 12:29 AM
Heather8773 Heather8773 is offline
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Random but I currently have a throat sore and one on my toung ( get them a lot due to my job) and the only thing that sounds good to me this week is cold fruit. I know fresh fruit is a no no during transplant but frozen fruit and packaged fruit cups were allowed at my husbands transplant center.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #9  
Old Sat Dec 7, 2013, 08:36 AM
sstewart09 sstewart09 is offline
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My husband also has no mouth sores. He too was delligent about mouth wash, teeth brushing (not recommended with low platelets, but he never had problems with bleeding gums), and drank lots of fluids.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #10  
Old Sat Dec 7, 2013, 08:23 PM
mausmish mausmish is offline
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Those of you who avoided the mouth sores, that is wonderful! Those who didn't, it does NOT mean you did anything wrong. I drank tons of fluids and practiced great hygiene diligently and still ended up with grade 3 mucositis the full length of my digestive tract. Sometimes it just boils down to bad luck. The good news is that no matter how miserable, it will heal and eventually be nothing more than a bad memory.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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