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MDS Myelodysplastic syndromes

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  #1  
Old Sun Sep 4, 2016, 01:29 AM
Faye R Faye R is offline
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gums and teeth

How many suffer from bleeding gums and what are you doing about it. I going to the dentist regularly have a water prick etc yet I can't control gum bleeding, every now and then I take Tranexamic acid 2 x 4 a day for one week however would love to stop this any suggestion other than the obvious dental health care which I think I'm pretty good at.
DX RCMD 14months on Vidaza stopped working now transfusion every two weeks
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  #2  
Old Sun Sep 4, 2016, 09:56 AM
Marlene Marlene is offline
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How high are your platelets and do you know your clotting times?
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Sun Sep 4, 2016, 01:07 PM
rar rar is offline
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Gargle with 2 parts baking soda, 1 part salt. Point water pic up under the gum line. This will make them bleed but after getting the bacteria from under the gum line they will improve.
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  #4  
Old Wed Sep 7, 2016, 09:34 PM
Faye R Faye R is offline
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Smile Platelets

Hi thanks for your advice, they seem to have settle down again, my platelets aren't good didn't received my complete blood count report this time they just told me that my Hgb 89, Anc 0.12, Platelets 34, had another transfusion on Tuesday 2 bags.
DX RCMD
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  #5  
Old Wed Sep 7, 2016, 10:20 PM
Cheryl C Cheryl C is offline
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Hi Faye - I'm very sorry to read you've been having a difficult time lately.

My platelets are usually not far below normal and my B12 usually shows up as normal. However, recently I started taking Vitamin B complex anyway, as I'm caring for two grandchildren at present and wanted to reduce stress. It seems that an unexpected benefit came my way as my platelets jumped away up to 190 where I haven't seen them for many years. Just wondered if this may be of some small help to you if you're not already taking B vitamins.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #6  
Old Thu Sep 8, 2016, 09:11 AM
Marlene Marlene is offline
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Hi Faye,

It may be worthwhile to get screened for h.pylori bacteria. This can cause and/or contribute to the gums bleeding. The salt/baking soda Ray suggested should help. Vitamin K can help with clotting. John would take Knox gelatin to help with clotting since it naturally has vitamin K. You have to make sure you get the real stuff and not the vegetarian kind. He would mix it with warm water to dissolve it and then add orange juice and drink it down.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #7  
Old Thu Sep 8, 2016, 12:30 PM
GoodDay5150 GoodDay5150 is offline
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So what about magic mouthwash/ Rocky Mountain mouthwash? I remember getting it a long time ago from my HMO pharmacy for some reason. I know that it is used sometimes for chemo related mouth sores, and I don't know if it would help your situation. I doubt it would hurt anything. I get occasional bleeding gums while flossing, but according to my dentist my teeth/ gums look good. I have had some crowns done since my transplant, and I ddnt get any infections or have any other issues w/ them.

Mario
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MARIO, 52, DIAG IN 2011 W/ PNH, MUD IN DEC 2011. MINI TRANS PSL DENVER/ SOME MILD GVHD. CURRENTLY TAKING JAKAFI FOR GVHD.
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  #8  
Old Wed Sep 14, 2016, 07:20 PM
Faye R Faye R is offline
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Smile bleeding gums

Thanks everyone I'm now taking Vitamin B6 -B9- B12 along with my multi V's my gums have settle down again my dentist said," don't brush too hard Faye" I don't normally complain but sometimes I just get down how can I carry on with all this, tired all the time, no mo jo left in me, my poor old legs you should see them, they look like something from a horror movie, the right leg is the worse leg, I do have Hydrocortisone Cream 1% to put on, don't like to use it for to long, waiting for yet another herbal cream to try will let you know how good it is. I forgot all about the gelatine thanks will get back on to that straight away, while I'm on the band waggon I'm having night sweats what's that all about, thought I was over the women thing years ago. I'm enjoying watching the Paralympics' give my self a good talking to 'got nothing really to complain about when you see how happy they all are and how they are just getting on with life.'
Dx RCMD
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  #9  
Old Wed Sep 14, 2016, 11:06 PM
Naive Naive is offline
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I haven't been what you are going through so I can't really comment on feeling down but it seems you have every reason to feel down. Happens to people who aren't physically sick too. All the inspirational quotes in the world aren't going to help you with that one. All I can say is I hope your mojo comes back soon.

As for the night sweats...I thought I was over them 13-14 years ago...back with a vengeance. Not just during the night either. I've been wondering what that's about too. If you find out...let me know.
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  #10  
Old Thu Sep 15, 2016, 08:00 AM
Cheryl C Cheryl C is offline
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Hi Faye - I'm glad your gums have improved.

Night sweats can be associated with MDS, so are not necessarily menopausal. It's worth mentioning it to your doctor if you haven't already as they can also be symptomatic of other serious diseases.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #11  
Old Thu Sep 15, 2016, 11:20 AM
Marlene Marlene is offline
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Glad they are better. If you haven't already, consider getting an electric toothbrush. We use the oral B with soft brushes. The round head gives you more control and you'll find you will use less pressure when brushing. I used to scrub my teeth with a manual brush think harder was better but per my dentist, I was too brushing too hard. I was surprised at how effectively the electric toothbrush cleans teeth and is more gentle.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #12  
Old Thu Sep 15, 2016, 04:29 PM
PaulS PaulS is offline
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My gums used to bleed sometimes upon flossing or water pic - I started using a mouthwash with claims to reduce placque and gingivitis and also supposed to restore or help enamel - in combination with a whitening and flouride tooth paste. Ever since my gums haven't bled (even with very low platelets). I was worried about passing the pre transplant dental exam ( I hadn't been to the dentist in a VERY long time) - but passed with flying colors and my gums and teeth seem pretty good.
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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