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MDS Myelodysplastic syndromes

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Old Mon Oct 10, 2016, 08:13 PM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
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Blood levels drop at high altitude?

Hello everyone,
My hopes were dashed for a long watch and wait MDS RAEB1, when my blood tests came out last month, showing a rapid decline.
I have had 3 blood tests in 2 months
8/15 8/22 9/26
WBC 2.8 2.5 1.9
RBC 3.4 3.2 3.1
Plts 78 77
I will have my monthly blood test in 2 weeks, so I predict they will fall further. My haematologist is worried about my WBCs, stating that they will start talking about a transplant in summer.

Since my counts are falling this fast, isn't summer a bit too long to wait until I fall under the WBC 10000mark?
And is there a chance my blasts have increased (it was 5.6% on 8/22)?

I've decided to join the church bus tour to the hot springs of Akita, higher altitude, North of Tokyo.
I've been so stressed out that I need this trip to destress myself (I'm the no-nonsense type, but some days I just want to rave and rant and cry my heart out!)
Any suggestions would be really helpful at this moment.
Meri
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Old Mon Oct 10, 2016, 09:00 PM
rar rar is offline
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Location: colorado
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I live 1 mile above sea level. While altitude lowers RBC the variation is small in comparison to what MDS does. In the 4 months before transplant my WBC was 1.2 (4-10) RBC 3.5 (4.6-6.2) PLT 40 (100-400). My doctors were not too concerned, nothing was critical. Numbers were close to yours. My HGB was 10 (14-18) ANC .2 (1.6-7.5). HGB was getting down to critical, ANC was critical. An easily caught infection could be fatal because I had insufficient neutrophils to fight it off. I was told to have very limited contact with any infection source. If you ANC is that low I would advise against a group tour or an airplane ride.

Ray
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Old Tue Oct 11, 2016, 05:44 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Hi Meri T.

My white cells average around 1.5 except when I'm sick, when they increase temporarily. My red cell levels are similar to yours. I live a very normal life, travelling on planes, trains, etc. (My platelets have been normal most of the time since I started supplementing with Vitamin D3). As long as your blasts aren't increasing, you may be OK to go on the trip.

When you are in groups of people be extra careful with hygiene - wearing a mask can help prevent infections.
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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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Old Tue Oct 11, 2016, 07:00 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
Thank you Baille and Rar.
I wear masks everyday commuting to and from work. Think really packed metro subways. I was thinking of quitting my job, but after 2 days leave moping at home, I decided working was better for my mental health, so I'm still risking infection everyday.

Ironnically, before being diagnosed, I was always so tired, headaches most days ...but nowadays, after changing my lifestyle (no more overtime) and diet (no more on the go cakes or donuts), I hardly ever get headaches, and feel almost normal in the daytime.

Evenings is when I crash. So I'm a bit apprehensive about going off up to Akita. It's a 10 hour bus drive. Yes, there will be sushi, there will be the hot springs, both of which I will not risk. Seems like I should pass on this trip, and find somewhere closer to home to
de-stress myself.

I really want to fly off to see my family. The last time I flew was in 2011 when Fukushima melted down, and I spent a few months in the States. That was so long ago, now I was just thinking of one last trip somewhere, anywhere, you know, before my CBCs go under.

Gosh, I sound pathetic tonight. Thank you for letting me put my thoughts out.
Meri.
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Old Tue Oct 11, 2016, 07:50 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 174
Thank you Cheryl,
Seems you are braver than I am.

Just like to add to the list of my many ailments:
FRC 7.82 way too high (under 0.75)
HFR 4.5 high ((0.0-1.2)
MFR 16.6 high (1.4-11)
Lym 56.5 too high (19-47)
Seg 38.5 (45-75) low
Eos 0.0 (0.5-7) low
I tried to google the abbreviations, but it all came back as "related to blood disorders/leukemia".
Need some help for specifics. Thanks.
Meri
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