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  #1  
Old Mon Apr 11, 2011, 03:10 PM
mausmish mausmish is offline
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Question Dry mouth remedies?

i'm 132 days post transplant and experiencing severe dry mouth. I drink lots of water and use Biotene mouth rinse. I avoid caffeine. Any other tips that might help? Is this most likely a temporary condition or something I can expect to live with?

I also have extremely dry skin and scalp. What are your favorite remedies for this? Again, most likely temporary or permanent?

Thanks,
Karen
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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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  #2  
Old Mon Apr 11, 2011, 06:19 PM
Lori Patrick Lori Patrick is offline
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Hi Karen. I was fortunate to only have dry mouth for a short time. I used the Biotene mouthwash and it helped greatly. As for the skin, mine is horrible as well but I faithfully put eucerin on after I shower. It has helped. I hope you get relief from dry mouth - that is horrible. Some of the "simple" things that we take for granted at times huh. Hugs, Lori
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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  #3  
Old Mon Apr 11, 2011, 07:27 PM
Laura Laura is offline
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Hi Karen,

See if you can get Vanicream lotion and shampoo. It is for extremely dry skin/scalp. It works wonders!!! Just load up with lotion in the am/pm and you will see a HUGE difference!! If you can't get this. Let me know and I can mail you some. Mayo clinic actually invented it so it is stocked all over town.

As for the dry mouth. I have bad dry mouth too. Could be a life long thing or could get better. Could be from meds too. Try sucking lemon drops, hard candy (preferably sugar free). That is what I do. I also chew gum and that helps a lot too. The biotine is another idea but you already do that.

Laura
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  #4  
Old Tue Apr 12, 2011, 05:38 AM
squirrellypoo squirrellypoo is offline
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I can't really help with the dry mouth as I never experienced that, but I've been seeing a great dermatologist at King's since my first GvH rash broke out (and I'm now seeing her for hormone-related acne following the transplant).

I used (all are prescription here in the UK) :
Capasal shampoo It reeks like petrochemicals but does a seriously good job on dry, flaky scalp, and I only ever needed to use it a few times a week when it was at its worst, followed by regular shampoo to cover the smell.

Doublebase lotion On any dry skin, and it's now my every day face lotion after urging from the dermo. Comes in enormous pumps that last me a good 6-9 months.

Betnovate ointment This is a mild steroid ointment (the cream version isn't anywhere near as good), but this stuff is pure magic for eczema patches and most rashes. One thin application stops it dead and it's healed the next day. This tube has lasted me at least 9 months so far and it's only half used!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #5  
Old Tue Apr 12, 2011, 04:09 PM
ramey2148 ramey2148 is offline
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I had my transplnt Aug. 31st and still have dry mouth. I can't go anywhere without a bottle of water. I also just started to get acne on my forehead. I thought at age 33 I wouldn't have to get that again...lol.. Hey just happy to be here and thanks for some of the advice on how to manage it. I think once they reduce some of the meds it will go away (I hope).
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  #6  
Old Tue Apr 12, 2011, 04:48 PM
mausmish mausmish is offline
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Thank you much for all of the helpful replies.

Laura, I do have a big tub of Vanicream but didn't know there is also shampoo. i'll check into it. Thanks also for the tip about candies for dry mouth. I'll try that.

Melissa, i'll also check on the remedies you mentioned - they sound great.
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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 Tue Apr 12, 2011, 08:39 PM
Laura Laura is offline
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Vanicream comes in all shape/form...chapstick, sunscreen, shampoo/conditioner, shave gel, lotion, hair spray, hair gel, etc.

http://psico.com/

They have a new lotion out that is specifically for dry skin.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #8  
Old Tue Apr 12, 2011, 08:39 PM
Laura Laura is offline
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http://psico.com/products/vaniply.cfm
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #9  
Old Tue Apr 12, 2011, 11:02 PM
mausmish mausmish is offline
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Thank 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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