[sdrake]

Thanks for your replies. I am certain that Dad was premedicated. He has had many rbc and platelet transfusions and never had any problem. I am hoping this was just a fluke and won’t happen again.

Shari

[sdrake]

Katie,

I am so sorry for your loss. Know that God is near and many prayers are being said for you and your family.

Shari

[sdrake]

My dad was on Vidaza for 2 1/2 years and did very well on it. The main side effects he experienced were very sore arms from the injections, and constipation. Dad only required 2 transfusions the entire time he took Vidaza. He did not experience any hair loss at all. I can’t offer anything about Exjade and Vidaza.

We were all very grateful for the good response Dad had with it. This past summer it quit being effective. He has been on Revlimid for about six months with minimal results. He has required transfusions of both platelets and rbc. He just underwent radiation on his spleen because it had gotten very large since the Vidaza stopped working, and it was getting quite painful. We keep praying things will improve. I certainly wish something would work as well as the Vidaza did.

I hope your dad’s response to Vidaza is as good as Dad’s was. Take care, and I’ll be thinking of you and your dad.

Shari

[sdrake]

Jen,

Thanks so much for your prayers. I appreciate the information – it helps calm the fears a bit. They are keeping a close watch on Dad. He is getting platelets again today. Hopefully after the effects of the radiation settle down, his platelets will get better.

He has been feeling so much better. The radiation has shrunk his spleen considerably, and his wbc is much much better. It always seems like when something improves, we get hit with something else to worry about!

Thanks again, and my best to you,
Shari

[sdrake]

Thanks for letting me know what you are experiencing. I don’t like Dad’s platelets getting so low. It appears from your experience that it isn’t unusual though (at least it happened to both of you). Good news about your wbc and monocytes. I will be interested to know how your BMB turns out. I be thinking of you and wishing you the best.

Take Care,
Shari

[sdrake]

Jack,

I was just wondering how your counts have been holding? Dad just finished his 6th radiation treatment. His wbc has dropped from 81 to 5, which we are all feeling good about. I think he is on his 3rd or 4th transfusion today. He has needed rbc about every 3 days now. His platelets were down to 9 this morning – an all time low for him. Is this to be expected? I know yours got down to 25 – did they rebound somewhat when the treatments were over?

Dad’s blood work came back. The -5q is no longer detectable. Dad’s doctor seems encouraged by that. He says the Revlimid must be doing something. He thinks it may just take more time before it improves Dad’s counts. He also did another test to see what other treatment options Dad might have.

Dad feels considerably better. His spleen has shrunk a great deal. He said he thought he felt pretty good today, until he saw how low his hgb and plts are.

Did you get back on the Zarnestra?

Shari

[sdrake]

Tamie,

You have come to the right place for both information about this disease and support as you go through it with your mom. I hate to see how many younger people are being diagnosed. Although being younger probably gives your mom options that she might not have if she were older. It is great that her brother is a perfect match. Keep us posted as to how the transplant goes. Learn all you can and ask lots of questions. My prayers are with you and your mom.

Take care,
Shari

[sdrake]

Katie,

Your experiences with your dad and this horrible disease have touched more people than you can imagine. You are indeed a wonderful daughter and friend to many. My thoughts and prayers are with your dad and you. Keep the faith.

Shari

[sdrake]

Jack,

Dad had his first radiation treatment on his spleen yesterday. The radiologist we saw really talked like the procedure is a piece of cake. They are planning on doing 4-6 treatments.

They are about ready to give up on Revlimid. It doesn’t appear to be doing much, although they are sending off a bunch of blood to see if there have been any changes. The doctor thinks it would be a good idea to stick with it during the radiation treatments and see if there is any change after that.

How were your counts this week? Hope you are doing well.

Take care,
Shari

[sdrake]

I’m no help with your question, but just wondering how you are doing?

Shari

[sdrake]

Jack,

Did your red count recover after the transfusions? Between the Hydrea and the Revlimid, Dad’s needed several transfusions over the past few months. Did your spleen bother you much? Dad seems to think when his wbc gets higher his spleen bothers him more. Were they able to give you any indication of how long this might keep your wbc in check?

Dacogen has been mentioned again. I am inclined to think that since the Vidaza worked so well for Dad, maybe Dacogen would have a positive effect. We all so hoped Revlimid would be the magic pill. It hasn’t done what we hoped. I’m not sure how long Dad should stick with it. The doctor in Omaha said it can take several months, but it sure is hard to be patient.

Best wishes to you,
Shari

[sdrake]

Jack,

I’m glad the radiation brought your counts back to near normal. That is certainly encouraging. I am so interested in your post because that is the next step they are considering with Dad. He has been on Revlimid for about 4 months now. It hasn’t done much that we can tell so far. His white count keeps going up. It was 79 today, so they upped the Hydrea he is taking. Dad saw a doctor at the Med Center in Omaha in November. He suggested Dad stick with the Revlimid. He said when the wbc gets too high we can knock it back down a bit. He said if it didn’t appear that the Revlimid was doing the trick that radiating the spleen is the next thing to do. Dad is supposed to be hearing from a radiologist soon.

Can you tell me a little more about what Dad might expect? I hope things continue to go well for you. Are you still on the Zarnestra?

Take care,
Shari

[sdrake]

Linda,

I’m so sorry for your loss. Please know you and your family are in my prayers.

Shari

[sdrake]

Please know that my prayers are with you and your family. Remember all the wonderful times shared with your father. Give Noah an extra hug and take care of one another at this difficult time.

Shari

[sdrake]

Jack,

Thanks, this certainly makes it sound like Dacogen would be a good option for my dad. I will share this with him. Hopefully if the Revlimid doesn’t work its “magic” soon, we could go the Dacogen route. It does appear that maybe Revlimid is at least keeping Dad somewhat more stable than he has been for the last three months. Again, thanks for the information.

Shari

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