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  #1  
Old Sat Aug 6, 2016, 09:52 AM
Sarah Roman Sarah Roman is offline
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Hi everyone!
I had my 4th visit to the hospital yesterday and things have dropped a little Rbc now 1.95 Hemoglobin now 7 was 9 wbc is good 5000 so really pleased with that although all the other white counts vary low and a couple high if that make sense to anyone that can help me?? please?? My platelets were 22000 now 17000? I am on the same medication its been 6wks so not long but wasnt excepting things to be lower although I have had headaches and felt very tired. I had a blood tranfusion yesterday second time but not feeling any better today. Its seems that I have good moments and bad does anyone else feel this way? Would love to hear from people with similiar stories and so grateful for advice and questions to help educate myself as here in Spain struggling on my own. Thanks x
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  #2  
Old Sat Aug 6, 2016, 01:04 PM
riccd2001 riccd2001 is offline
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Regarding PRBC transfusions...

Just a suggestion from a long-time PRBC-infused guy...

Keep a precise record of your transfusions. Each unit is quite different in its donation date, expiration date, and volume. Good luck with your treatments.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #3  
Old Sat Aug 6, 2016, 04:12 PM
Sarah Roman Sarah Roman is offline
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Hi!

Thanks for reply wow you really have had some transfusions! I hope you are keeping well. Thanks for advice so you mean Date transfused and sorry what else do you mean?
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  #4  
Old Sat Aug 6, 2016, 10:28 PM
Hopeful Hopeful is offline
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Hi Sarah,

I am sorry to read that things aren't improving for you. Have you discussed with your doctor whether horse or rabbit ATG is an option, in combination with cycloporine? This is a more standard treatment regimen for AA, especially if you are becoming transfusion dependent.

Again don't think things are improving if your WBC is higher but you are also taking prednisone. Prednisone causes a false rise in WBC.
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #5  
Old Sun Aug 7, 2016, 06:03 AM
Sarah Roman Sarah Roman is offline
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Hi Hopeful!

Thanks for your reply,well I not sure what to do feeling confusedas I am not sure if my results warrent ATG is there a minium result? My ANC is 1.3 so not sure if that would be low enough. I am back in 2 wks and will see but I want the most effective and as you said standard treatment is Atg and ciclosporine. I am patient its all the family that are not its only been 7wks but so grateful for as much advice as I can get. The transfusion has not really made much differnce to how I am feeling the ringing in the ears has stopped but still so tired and all i can describe is weak. Also when he describes me as having a little bone marrow not alot is the idea of medicines to make it bigger or to help it work?? Thanks xx
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  #6  
Old Sun Aug 7, 2016, 10:02 AM
riccd2001 riccd2001 is offline
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Blood Bank Identification...

Quote:
Originally Posted by Sarah Roman View Post
Thanks for reply wow you really have had some transfusions! I hope you are keeping well. Thanks for advice so you mean Date transfused and sorry what else do you mean?
When you receive a blood product there should be an identification sticker or tag securely attached to the "bag." Together with a precise individual identification number there will be blood type (e.g., O Positive), date the donation was made, date the donation expires, and actual volume in ml.

Most recommendations are if and when you have had about 20 "bags," you will need to discuss iron chelation treatment (e.g., Exjade) with your Doc to mitigate iron overload.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #7  
Old Sun Aug 7, 2016, 10:17 AM
Sarah Roman Sarah Roman is offline
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Helpful

Thanks for that I will do! Do you have AA?
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  #8  
Old Mon Aug 8, 2016, 11:22 AM
Hopeful Hopeful is offline
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Hi Sarah,

Here is a layperson's analogy to help you understand what may be going on in your marrow, if you have immune-mediated AA...

You can think of your bone marrow as a factory that produces blood cells. This factory is being attacked by evil T-cells which are trying to destroy it. The evil T-cells will try to destroy every blood cell that your factory (marrow) produces. Then they will try to destroy the factory itself. If the factory is destroyed, it won't be able to produce blood cells and you will have SAA. Right now, your factory is damaged but it is still standing. Since it is damaged, it is not producing the normal amount of blood cells. I think your doctors are trying to increase the amount of blood cells that it is producing with the help of Etrombopag and Procrit(?). Meanwhile, they are hoping that the cyclosporine can help fight off some of the evil T-cells. Every day, the evil T-cells are expanding. Is the cyclosporine enough to win the war? Or do they need a big bomb like ATG to save the factory?

If your doctor truly thinks you have AA, then I would discuss with him why you are taking prednisone and whether you can taper off it.

Etrombopag is really a new drug, and although it shows great promise in the treatment of AA in combination with ATG, it is in the clinical trial stage. In other words, it is experimental and the long term consequences are unknown.

Watch-and-wait is the hardest part. Look at your diet and exposures. Make sure you are not taking any suspicious over-the-counter medicines/drugs, avoid all alcohol, don't smoke (if you do), eat organic, and stop drinking teas because of possible contaminants. These are all things to try now, in case you are unknowingly ingesting something that is harming your body.

If things start working again, maybe you will be able to avoid the ATG. Should you need it in the future, it would be good to discuss now whether horse/rabbit ATG is an option there and whether your hospital has experience administering it. This is just for planning purposes, should you need it in the future.

How long are you going between transfusions?
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #9  
Old Tue Aug 9, 2016, 03:52 PM
Sarah Roman Sarah Roman is offline
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Great explanation.

Hi Hopeful,

Thank you so much for the explanation it really has helped me, its all starting to make sense to me well a little anyway. I went to the hospital today as I started to lose blood heavliy yesterday and was concerned as my platelets were quite low, so he did an anaylisis and Hem. 10!!! and Platelets 21000 I had transfusion on Friday 5/8/16 they have both risen is that coincidence with having the transfusion seems to have gone up a lot in 4 days?? Is it normal for counts to fluctuate? I feel very blessed and I do pray that this continues I am back on the 19/8. So I have read some many cases and I am not sure but most people seem to regain a normal life style is this your case? I am so looking forward to being active again and I do hope I dont have to take medication for a long while. You are very helpful hopeful and a big thank you for helping me understand xxxxxxx
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  #10  
Old Tue Aug 9, 2016, 04:03 PM
Sarah Roman Sarah Roman is offline
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Forgot

Sorry Hopeful,

No I decieded when I was diagnosed with this to cut alcohol out completely as I know that it is not going to help my recovery and its kind of strange I dont miss it at all Also I dont smoke never have so thats a plus only thing is my appetite is non exsistent lost it completely my husbands get infuriated with me but I do try I am quite healthy I eat lots of spinach and salad,fish I do my best but when I am not doing much exercise as I am still not working or really leaving my house its kind of tough. Thanks Sarah
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  #11  
Old Fri Aug 12, 2016, 11:11 AM
Hopeful Hopeful is offline
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Hi Sarah,

It looks like the transfusion gave you a nice bump in your hemoglobin. Hopefully, it will still be high at your next appointment. The platelet fluctuations are normal.

Are you still walking? Do you have muscle wasting from the prednisone? My doctors' encouraged me to continue to exercise (in moderation) because I was so active before diagnosis. It helps maintain your sanity through this ordeal. Ask your doctor if this is okay for you.

I was able to regain a normal lifestyle. I am on medications for life, but that is my new normal

Good luck!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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  #12  
Old Thu Aug 25, 2016, 05:16 AM
Meri T. Meri T. is offline
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Record the conversation

I understand your communication problem in Spain. I am in Tokyo newly diagnosed with MDS. I recorded the conversation with my doctor when the results came in, and played it back when I got home having calmed down a bit.

It's just so hard to take in everything the doctor says, what with all the new medical terms, the foreign language, when I'm so scared inside.
I don't think your doctor would mind if you asked him permission beforehand. You could try that, especially if like me, your spouse can't come with you to the appointment.
Meri
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