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  #1  
Old Wed Jan 14, 2015, 02:29 PM
Julianna Julianna is offline
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Mucositis relief?

I didn't have a very good night. I have a very very sore throat & told it was from the chemo. Mucositis. I'm taking pain relief but it only takes the edge off.

Others experience? What has helped you through this time & how long can it last? I can hardly open my mouth. Very uncomfortable.

Thanks
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #2  
Old Wed Jan 14, 2015, 04:40 PM
DanL DanL is offline
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Julianna,

Mucositis is a challenge. Best way to deal with it is to be sure you are doing your rinses, take any and all drugs that they offer for killing pain, and see if they have other options if the ones you are on are not working well, and then work with softer, cooler foods as much as possible. Nothing wrong with a little ice cream and smoothies.

Good luck.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #3  
Old Wed Jan 14, 2015, 04:55 PM
Neil Cuadra Neil Cuadra is offline
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I feel for you, Julie. Mucositis is the pits.

My wife survived on popsicles during the worst of it. She also had a device, kind of like dentists use, that let her syphon saliva out of her mouth rather than having to swallow it, because swallowing was painful. That really helped her.

Don't let them short-change you on the pain medication. Keeping on top of pain can help your overall recovery because you won't spend all of your energy gritting your teeth against pain.
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Old Wed Jan 14, 2015, 05:30 PM
mausmish mausmish is offline
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The suction device and pain killers got me through a severe case the full length of my digestive tract. It was the worst part of my transplant. Rinses/ice didn't help mine. Best of luck to you!
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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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  #5  
Old Thu Jan 15, 2015, 04:32 PM
Julianna Julianna is offline
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Thanks guys. Can mucositis cause fever? I was moved to isolation & my Picc line removed last night. 39 + temps but I think it's settled a bit not sure. I'm feeling warm & sweaty. Anyway, hope they get to the bottom of it quick. Still neutropenic.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #6  
Old Thu Jan 15, 2015, 04:34 PM
Julianna Julianna is offline
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Ice has helped a little. They are giving me morphine & a few others. Helps me to eat a little. Not fun!
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #7  
Old Thu Jan 15, 2015, 11:32 PM
Chirley Chirley is offline
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Julie, the things you do to get a room of your own! Hot and sweaty.... its 35C out there don't you know?

Seriously,
Hope you feel better soon. Don't know anything about mucositis...sorry. All I know that anything with itis at the end means inflammation and in my eyes that can mean fevers but that's pure guess work.

I'm back in on Monday for my JJ tube insertion. I wasn't expecting it to be this soon but it's the only opening the surgeon has or I have to wait another month with this tube down my nose. I've been on tube feeds for two weeks now and I've put on a massive 1.3kgs I've gone from 45.5 to 46.8.... I don't see how that has made me any fitter for this surgery but hey, if they insist on sticking tubes in any oriface they can just to make life more interesting......who am I to argue?

Stay well.
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  #8  
Old Fri Jan 16, 2015, 06:03 AM
Cheryl C Cheryl C is offline
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Julianna - did you see my post on your other thread earlier today?
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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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  #9  
Old Fri Jan 16, 2015, 06:35 AM
SLB SLB is offline
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Sorry to hear this Julie. I never got any mucositis with my first round of chemo but a mild dose with the second for which I had a fentanyl patch for. With my transplant, I got the worse dose ever!! ( well it certainly felt like that )! At the worst I was on constant fentanyl with a push button for extra doses that I controlled. I refused to get anything & would use the suction hose or spit my saliva into a tissue to avoid swallowing! It certainly was not fun & I think I spent the better part of a week, in a drug induced haze! And even with that, I don't think I was ever pain free or comfortable enough to eat. (I was on TPN feeds).. I remember several instances that I would get these excruciating headaches, so severe that I would vomit (which was beyond painfull) & I would discover my blood pressure was super high! I never did work out if the headache was caused by the high blood pressure or the severe pain caused my BP to sky rocket!!

Sorry, I don't have anything helpful to add really but for you to know that we have been there! Like Dan said, take all the pain relief offered & try to eat anything that appeals. Fevers are awful, and tiring.. Removing your pic line is almost always their response to fevers if nothing shows in the blood cultures. I went through 3 during my 2 rounds of induction chemos. Was not happy because they hurt like anything for the first week or so.

Anyway hang in there once your white cells make a comeback the mucositis clears up quickly. We are all thinking of you and hope you recover quickly.
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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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  #10  
Old Fri Jan 16, 2015, 06:37 AM
SLB SLB is offline
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Ps... Good luck on Monday Chirley!! And good going on the weigh gain!!
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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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  #11  
Old Fri Jan 16, 2015, 01:54 PM
Julianna Julianna is offline
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Thanks Sharni. Taking pain relief regularly is the key. But swelling makes laying on my back so uncomfortable like I'm almost choking. Had scans early this morning, hoping they may shed some light.
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #12  
Old Fri Jan 16, 2015, 07:01 PM
Chirley Chirley is offline
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Julie, I remember when I was discussing mucositis (when I was looking at transplant) with Dr Misra he said it was one of the most miserable side effects you can get. I remember him telling me that the answer to mucositis was drugs and lots of them!

As for your counts being low...that's what they were hoping to achieve, the question is, how long till they start coming back?

Have the doctors spoken to you about how long before they expect your counts to start rising on their own?

Good luck with the scan results.
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  #13  
Old Sat Jan 17, 2015, 02:32 PM
Julianna Julianna is offline
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Hi Chirley, the scan results was I have infection in my lymph nodes & my lungs again. Wondering if my lungs are realising that my constant chocking from inflammation. So I wake up what feels like. Oops u let that mucos in! And cough...hurts hasty! So easy for bugs to get in.

Anyway, I need a nutritionist or speak pathologist to learn how to eat with this. But endone & panadol seem to work well together. Each day is different.

Let's tacked this one...xo
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #14  
Old Sat Jan 17, 2015, 02:36 PM
Julianna Julianna is offline
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P.S. this is the week! And definitely surly by my 28th day. So maybe even this day in a week!

How exciting, it will help with most of all my symptoms 😊

Day at a time, sweet Jesus...
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Julie (38yrs); dx AA 1996 & treated w/ATG, cyclosporine & G-CSF; 2010 dx int-1 secondary MDS, low platelets, on prevention antibiotics, fevers of unknown origin, MUD found for BMT when the time is right, which is now! MDS transformed to AML after many infections.
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  #15  
Old Sat Jan 17, 2015, 06:30 PM
Chirley Chirley is offline
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Great, so the Docs reckon this week your counts should recover? I bet that feels like forever, right now.

I bet you'll be waiting for those blood results every morning with fingers crossed.

Now that they've found the source of infection and can target it they should be able to get it under control and then when your counts come back you can help fight it off yourself too.

Sounds like things should start improving soon.
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  #16  
Old Sat Jan 17, 2015, 10:45 PM
Cheryl C Cheryl C is offline
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Lovely to read that you can look forward to some relief and improvement in your wellbeing very soon! I'm sending you a big hug for being so positive even though you've been so unwell.

One other thing which could possibly be useful for you, Julianna, in the future. I know you must be struggling to eat at all at present, but I just wanted to share with you my own experience in case it could be helpful to you. Since having MDS I am much more prone to having excess mucous and sinus/upper respiratory infections. One thing that really works for me is to avoid dairy and cane sugar products - and especially in combination. If I ever succumb to eating something like cheesecake, I will always regret it because in the early hours of the morning I'll wake up with mucous running down the back of my throat and will end up coughing - that's the end of sleep for me!
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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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