[Zoe]

Beth,
Welcome to the group. I am glad you were able to find us. What type of MDS does your husband have?

Zoe

[Zoe]

June,

I actually don’t go to a Center of Excellence. My health care providers are at a large cancer clinic associated with a university. They treat many MDS patients. The CNP just did a national presentation on MDS for nurses. I feel comfortable with them right now. I did not feel comfortable with the local hematologist however. At the very least, you want someone who is familiar with MDS, has treated a fair number of MDS patients, and someone you feel comfortable with.

Zoe

[Zoe]

Patti,

I am so sorry for you pain. Your MIL has had wonderful support from you in so many ways. I am glad she has you.

Zoe

[Zoe]

Lizzy,

I don’t know about Texas or Colorado, but I would really encourage you to get to a center of excellence. I know the hemotologist who first diagnosed me put me on iron because there was no iron in the marrow. However, the clinic I now go to took me off it, saying that the lack of marrow iron was the result of the MDS somehow, and that taking iron wasn’t helping me at all.

If I were you, in addition to the questions Celebrations posed, I would also want to know what my hemoglobin and hematocrit are, how my platelets and whites are doing also.

Are your blood counts stable? Before I started Aranesp I was getting blood work every month, and going to the clinic every 3 months, even with stable counts. When I started a downward trend and began the Aranesp, I went to blood work every 2 weeks. Waiting 3 months for lab work seems like a long time to me. Maybe others have a different perspective.

Zoe

[Zoe]

Sandy,

I didn’t post here, but I also sent out the e-mails to my representatives, and I e-mailed the link to friends and family.

Zoe

[Zoe]

I just started Aranesp when my hgb was around where yours is. I felt exhausted! Took naps every day, needed frequent breaks, if I looked at my calender and it had more than 2 things scheduled, I would feel like crying because it felt so overwhelming to me. I know some people function well on much lower hgb, but I just can’t. Between work and being a foster parent, I need my energy! I did experience lightheadedness when I pushed myself, which my schedule often requires. Once I get around 10, I start dragging, below 10, and life is miserable.

Aranesp has been a miricle drug for me. My hgb is up to 10.8. I forgot I could feel this good. My Nurse Practitioner told me that they base tx on symptoms. She said they have some folks they tx around 10, and others they wait until it gets lower.

Zoe

[Zoe]

Oh Stephanie, I am so sorry. Just said a little prayer for you all.

Zoe

[Zoe]

I am concerned about the health risks, but I personally think I am more concerned about insurance being pulled. Even with my insurance, Aranesp costs me $1700 a month. No way can I afford full price, and I am feeling really good on it. I don’t want to go back to how I was feeling. Since I am not on chemo, looks that the insurance company pulling out may be down the road. It is just bad news all around.

Feeling discouraged,
Zoe

[Zoe]

The 10/10 match is a good thing. Wishing her the best.

Zoe

[Zoe]

Karen,

I am so sorry. I have no doubt that having you all by his side meant the world to him.

Zoe

[Zoe]

Hello Josey, and welcome! You will find many very knowlegeable and supportive people here. What do your counts look like? What type of MDS do you have? I just started Aranesp after being diagnosed in November, so I am fairly new to this also.

Zoe

[Zoe]

OOOHH! Can someone give me a summary please? I have dial up, it would take hours to download.

Zoe

[Zoe]

J.claire, I am so touched by your offer! I would love to take you up on it, however, I’m afraid I have a houseful of girls (I do foster care), and 3 dogs myself. I work only very part time and have no other income. I get the bills paid, have some blow dough to do things with the girls, have an occassional splurge on myself, and that is about it. My medical bills are increasing dramatically. I am not sure how I am even going to stay on top of them. So, Simon, no, I am afraid I could not afford to see Dr. Raza. Patti, I copied the info about the dr up north in Ohio you provided-thank you! I will e-mail him to see if he knows anyone this way.

Thank you all for your support. It really is touching. It means all the more coming from people who are also dealing with this. I was talking to a friend last week and I shared how tired I was. She responded by telling me she knew what I meant. She then listed all the things she had been doing to support how tired she was. I felt so jealous because I was just as tired, but I had really not done anything except for the bare necessities–and even those were really not done well. I know you all live with this either directly or because of a close family member. You have walked where I walk, and you take the time to share. Thank you.

On the up side, since Friday’s sleep marathon, I had another 10 hours of sleep Saturday night. I am continuing to feel better and stronger. I even have the energy to laugh again (for a while there I felt so bad that it seemed all my energy went into just functioning, there was nothing left over to enjoy life). Maybe I just pushed too hard and needed to hibernate a while. The Aranesp can’t be hurting either :^)

Zoe

[Zoe]

Thanks for the responses. I did read at the UMass website among others. Makes me wish I lived in Mass :^) I think I am going to try staying off everything for a couple of weeks and slowly re-introduce things one at a time for a month each.

Zoe

[Zoe]

Alcohol therapy, sounds interesting :^) I am glad you can keep your sense of humor through all of this. Keep us updated.

Zoe

[Author]

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