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  #1  
Old Thu May 29, 2014, 08:02 AM
jmajjb jmajjb is offline
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Location: Amery WI
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When do you need transfusion?

I have so many questions- and currently a Dr on vacation...
What is the usual cut off for needing a transfusion? My Hgb is 10.9 currently. I talked to the nurse yesterday as I haven't gotten any good information from the Dr. She said the Dr thinks you have a mild case and shouldn't worry. I am still worried! Does anyone get chest pain with mild anemia? Is this normal?
The pain might be an ulcer brewing as I am so anxious. I cry all the time and feel so desperate. If anyone has any advice for me I have to wait until Monday to talk to a Dr. Have my second opinion at Mayo clinic on Monday. How does anyone know what to worry about and what is just a symptom of anemia?
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  #2  
Old Thu May 29, 2014, 10:01 AM
DanL DanL is offline
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Everybody is different regarding transfusion needs, but 8.0 HGB or 24.0 HCT seem to bee common cutoffs for transfusion needs. The body is remarkable and you actually get used to these lower levels of hemoglobin and hematocrit in most cases. You may notice some shortness of breath as you get lower, but chest pain is not typical. If you are experiencing a high degree of anxiety on top of the lower counts, that or another health issue could be the underlying cause.

I would call into your doctor's office or visit your local ER for chest pains and get checked out.

The last thing that you need at this time is damage to your heart that can be prevented.
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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 Thu May 29, 2014, 12:27 PM
jmajjb jmajjb is offline
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Spent the morning at the ER. Normal everything. Thinks I might have heartburn from vitamins and possibly anxiety. I feel better just knowing that my heart is ok.
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  #4  
Old Thu May 29, 2014, 07:44 PM
Chirley Chirley is offline
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Different treatment facilities have different transfusion levels. It also depends on your tolerance and the rest of your physical health. Eg..lung disease heart disease. Most people feel breathless on exertion at less than 8. Some require blood less than 9. The treatment centre I went to had a policy that people who were transfusion dependant (who required regular transfusions) were transfused at less than 10.... Only because they didn't want a chronic strain on the heart from being consistently anaemic. Other people who had other cancers and had intermittant, treatment related anaemia were not transfused at such a high level.

I'm glad you went and had the pain checked out. Vitamins can be a bit nasty on the stomach...Folic ACID, Ascorbic ACID....note the names...I always take my vitamins with food, I don't know if it decreases their efficiency but it helps my stomach.

I know having a "cancer" diagnosis is scary but you are the same person you were before the diagnosis and you'll be the same person tomorrow. You aren't going to get sick and drop dead tomorrow, nor even in a few months or even years. Chances are you won't even require any treatment for a long, long time. If or when you start having health issues you will be very knowledgeable about this disease and you will be mentally prepared for the treatment stage. I think you'll find there is nothing you can't handle.

Glad you're okay.
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  #5  
Old Thu May 29, 2014, 08:05 PM
jmajjb jmajjb is offline
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Thank you Chirley
I needed an uplifting talk. I am really having trouble with this uncertainty. I don't feel good and am afraid I will die very soon. It is terrifying for me. I have cried all day today and have prayed nonstop. The ER Doc suggested I turn everything over to God and stop worrying. He could see my distress. I don't know how other people deal with this but I can't. The one website listed the median lifespan for rars to be 38 months- which scared me terribly. Anyway I am trying to be positive and focus on positive things. I have researched all alternative therapies and hope something helps. The stress is so high right now that I feel that will slow down any healing too. Please pray for me to get a grip and stop the negative thoughts!
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  #6  
Old Thu May 29, 2014, 09:33 PM
Cheryl C Cheryl C is offline
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You certainly sound very stressed about your diagnosis. We on this forum can empathise with you. It's a bit like suddenly walking into a totally dark room!

Be assured that this is one of the best places you could go for support and information. I want to reassure you that many of us live fairly normal lives with blood results that look quite horrible, and prognoses which sound scary. Remember that median life-span means that there are many who live longer than that. Personally, I never think of myself as having cancer.

The American Cancer Society has some easy-to-understand information about MDS here: http://www.cancer.org/cancer/myelody...omes-diagnosis

This is another informative website: http://www.thirdage.com/hc/c/myelodysplastic-syndrome

Remember that knowledge is power when it comes to MDS. For starters you will learn what questions to ask your doctor.

While waiting for your next doctor's appointment if you want to know what anything on your blood test results or bone marrow results means there are usually people on this forum who will be able to explain in everyday language for you.

PS: It sounds as though you are a Christian, so I would like to encourage you with this bible verse: "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Phil. 4:6-7) Hand your anxieties over to God and He will give you peace.
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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 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
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  #7  
Old Fri May 30, 2014, 01:30 AM
Chirley Chirley is offline
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Geez Cheryl, makes me wish I believed. Nice verse.

I was just going to say that a lot of these life expectancy charts are for people who don't have treatment. Treatments are improving all the time and can make a huge differences to longevity.

As for getting a grip.....it will happen when you have worked through your emotions. I think you'll surprise yourself at how philosophical you will come about it.
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  #8  
Old Fri May 30, 2014, 06:35 AM
Birgitta-A Birgitta-A is offline
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Life expectancy charts

Hi jmajjb,
As Chirley wrote the common life expectancy charts are from 1997. Now we get much better treatment. My life expectancy was 3.5 - 5 years with RCML Interm-1 but after 8 years my test results are better than ever. Latest HGB 14.3.
Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 2006 with very serious fibrosis of the bone marrow. Transfusion dependent at dx with a HGB of 7.0. Supportive therapy until 2010. Since then treated with Thalidomide during 3 years and Revlimid since July 2013 with positive results.
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  #9  
Old Sat May 31, 2014, 10:47 PM
Caregive Caregive is offline
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Check out the calendar on this site. There are places in the country and world where study is taking place for MDS and related ailments. Also there are conferences held around. I will be attending the AAMDS meeting in Seattle in June. I contacted a relative who has myelofibrosis to let her know and she will be attending also.

My husband has MDS and still does all the garden and yard work and we take long drives for the fun of it. He struggles with the emotional side of things but I handle the diet issues, finances, making sure different doctors are updated on other issues he has. He is appreciative and we do nice things. I think his earliest 'wrong' and worrying blood test results started in 2007. After ages of testing, he was diagnosed with MDS a year ago. I read all the time on the net for the latest info on this and other related sicknesses. Then I go do something else.

There's a time to worry and a time to do something else. You can worry out loud here any time it helps. In time you will be answering other people's questions and concerns. A big thank you to all of you who post here.
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  #10  
Old Sat May 31, 2014, 11:02 PM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
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I think we need to keep in mind that MDS has many variations. Some are extremely urgent while others give time and options.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #11  
Old Thu Jun 5, 2014, 02:11 AM
Heather8773 Heather8773 is offline
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Join Date: Jan 2013
Location: Houston, TX
Posts: 239
I absolutely love this verse!! It helped get us through a lot of anxiousness!

God bless.

Quote:
Originally Posted by Cheryl C View Post
You certainly sound very stressed about your diagnosis. We on this forum can empathise with you. It's a bit like suddenly walking into a totally dark room!

Be assured that this is one of the best places you could go for support and information. I want to reassure you that many of us live fairly normal lives with blood results that look quite horrible, and prognoses which sound scary. Remember that median life-span means that there are many who live longer than that. Personally, I never think of myself as having cancer.

The American Cancer Society has some easy-to-understand information about MDS here: http://www.cancer.org/cancer/myelody...omes-diagnosis

This is another informative website: http://www.thirdage.com/hc/c/myelodysplastic-syndrome

Remember that knowledge is power when it comes to MDS. For starters you will learn what questions to ask your doctor.

While waiting for your next doctor's appointment if you want to know what anything on your blood test results or bone marrow results means there are usually people on this forum who will be able to explain in everyday language for you.

PS: It sounds as though you are a Christian, so I would like to encourage you with this bible verse: "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." (Phil. 4:6-7) Hand your anxieties over to God and He will give you peace.
__________________
Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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