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Myelodysplastic syndrome (MDS aka blood cancers) as well as Grade 2 Ductal Breast Cancer

KittyKay
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I have MDS and we (Consultant and I) settled on blood transfusion every six weeks. However I feel I have less energy in the last few days of the six week period (as opposed to the week before when I felt ok) the week previously. I am afraid that asking for five week interval for transfusion (which I have been offered) will be the slippery slope and that I may need them increasingly often.
Is this ever the case? 

Actually thinking back to beginning, the six week period was probably an arbitrary length of time suggested just to see how I got on! Nevertheless I feel it might be that there will be less and less time in between transfusions.

Just to make matters worse I also have breast cancer, Grade 2 Ductal cancer hormone positive and I’m taking the drug Letrozole.

I know MDS is rare so I don’t suppose there will be many correspondents on this Forum! However I would be interested to know if anyone else feels that they may be on to the “slippery slope” with the frequency of the blood transfusions with this condition.

  • Hello KittyKay and welcome to Cancer Chat,

    I'm sorry to hear that you've not been feeling as well as you had been recently, but you can should raise this with your consultant if you haven't already. I'm sure you'd be able to have a discussion without committing to five week interval, any changes made need to be write for you. 

    If you find that not many share your exact experience, you'll definitely come across members in a similar situation. If you'd like to look at guidance we have some on our website around Myelodysplastic syndromes. You can look at information on Letrozole, which includes some of the common side effects. We also have a team of dedicated cancer nurses available to speak to on our free and confidential helpline, if you'd like some advice over the phone. You can call them on 0808 800 4040 and lines are open 9 to 5 Monday to Friday.

    I hope this helps and best wishes to you,

    Moderator Anastasia

  • Offline in reply to Moderator Anastasia

    Hello Anastasia 

    I’m seeing the consultant tomorrow to discuss. I’m being very well looked after…
    I simply wondered if anyone else had the same experience. I will have a look at the forum you suggest.

    Thanks so much 

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