[sdrake]

Dennis,

Have a great time on your trip. I’ll be thinking about you and wishing you well.

Shari

[sdrake]

Maureen,

My dad always has a weekly CBC – whether he is taking Vidaza or not. Dad’s counts usually go down after he finishes a round of Vidaza. I am surprised they would wait so long to check your dad’s counts. I think I would want to double check – it doesn’t sound right to me.

Shari

[sdrake]

Susan,

My Dad was diagnosed with CMML about 18 months ago. He started taking Vidaza as soon as possible. I guess we didn’t really consider not trying it. At the time it was the only approved treatment, and we were just thankful that there was something to try. The doctors told us that it could take from 4-6 rounds of treatment before Dad saw results – if he was going to respond. After the initial treatment his wbc (which is high with CMML) started to come down and his hgb improved a bit. Dad’s spleen was very enlarged, and it even started to shrink. We were all encouraged by this. Dad has continued with the Vidaza since. There have been times when the treatment has been delayed because his wbc has gotten too low. He has required only 2 transfusions. The side effects haven’t been bad for Dad. His arms get sore, and he has had constipation which they really think is due to the antinausea medicine he gets before each shot.

Just recently Dad’s oncologist discussed Revlimid with Dad since he does have the 5q deletion. We were considering switching treatments. They did a BMB to see what is going on. The results came back better than we expected. His bone marrow is greatly improved. I think he is going to stick with the Vidaza for now. The Revlimid will be there for when and if the Vidaza stops working.

Dad has had a good response with Vidaza. It doesn’t work for everyone, and obviously isn’t good at all for some. I don’t know if this helps or not. The decisions are not easy to make.

Good luck and God bless,
Shari

[sdrake]

Dennis and Jerry,

Thanks for the input. I think you are exactly right. I guess we were all geared up to do the Revlimid. The results of Dad’s BMB were so much better than we even hoped for. This disease is such a roller coaster ride, but for now we are very grateful for the good news. Dad went for his weekly blood test today. It is the best he has had in the 18 months since he was diagnosed! When I put this all in writing it does make me wonder why we would change anything now. Thanks again for your opinions – they do help!
My best,
Shari

[sdrake]

Dad’s counts usually recovered fairly quickly once the next round of Vidaza was started. That is – his rbc and hgb went back up. It is always hard on his wbc.

We are trying to decide if Dad should try Revlimid. It does appear that the Vidaza isn’t working as well as it did, but it is still helping. Dad has the 5q deletion, so we are hoping Revlimid will work even better for him. He just had a BMB done last Friday, and we are waiting on the results of that to decide the next step.

Take care,
Shari

[sdrake]

Dennis,

My dad has been on Vidaza since 02/05. His white count gets really low in between rounds. Treatment has been delayed several times due to his ANC being so low. It seems that then his red count and hgb take a dive as well. He has required two transfusions in since he has been on Vidaza. When his ANC gets back to where he can start his shots again, his rbc and hgb come back up as well. The first time this happened I was afraid the Vidaza had stopped working, but it hadn’t. I guess I’m wondering if you are sure the Vidaza has stopped working for you?

Shari

[sdrake]

Phyllis and family,

My prayers are with you. I am so sorry to hear of your loss.

Shari

[sdrake]

Lori,

I’m so glad to know your mother is doing well on Revlimid. My dad’s oncologist is suggesting dad switch to it. Dad has been on Vidaza since 02/05 with pretty good results. It keeps his hgb in the 9-11 range. His wbc usually gets pretty low, but since dad has CMML his whites were high to begin with. They feel the Vidaza has at least controlled them. Dad’s doctor contacted Dr. List in Tampa who suggested Revlimid due to Dad having the 5q deletion.

It is a difficult decision for Dad. The Vidaza still seems to be working (although his platelets were pretty low at 45 this week). From all we read, Revlimid is so promising for patients with 5q. It does seem like the counts really bottom out before the good results kick in.

Any opinions on what Dad should do? Stick with the Vidaza until it obviously doesn’t work any longer? Or switch to Revlimid while his counts are fairly decent?

Shari

[sdrake]

Susan J,

My dad has been on Vidaza since 02/05. It has worked well for the most part for him. Dad’s white count gets pretty low, and it usually takes 5-6 weeks between the rounds rather than the 4 weeks that it is “supposed” to be. It definitely helps his RBC and HGB. He has only required two transfusions since starting the Vidaza. Dad says the worst part of it is the constipation caused by the antinausea medication they give him before his Vidaza shots. His arms also get pretty sore at the injection sites, but other than that he has gotten along quite well. We are certainly thankful that the Vidaza has controlled the disease, but keep praying for more, better options. I hope this helps.

With prayers,
sdrake

[sdrake]

JAGGYONE,

I want you to know I am praying for you and your husband.

Yesterday as my family and I were leaving church I asked my mom what her favorite Bible verse is. She said she has many, but one of her favorites is Proverbs 3:5-7 Trust in the Lord with all your heart,and lean not on your own understanding;In all your ways acknowledge Him, And He shall direct your paths. I found that very comforting – I hope you do too.

Take care,
sdrake

[sdrake]

kristyk,

That is great news. I hope you get even more good news this weekend.

Take care,
sdrake

[sdrake]

California Mom,

My dad was diagnosed 14 months ago, at age 66 with CMML. I read everything that I could get my hands on and scared myself into a frenzy. I have three young sons who think Grandpa is the greatest. I understand what you are saying about your daughters.

As Patti said, most of the information on the web is outdated, so don’t be too discouraged by what you read.

Dad’s oncologist recommended Vidaza which was started last February. When Dad was diagnosed, his spleen was huge – a result of the CMML. Dad has been fortunate, the Vidaza helped right away. His spleen started shrinking from the first round of treatments. His blood counts also showed improvement almost immediately. Vidaza doesn’t work for everyone, and Dad hasn’t had what is considered a complete response (all the blood lines in the normal range), but it has worked well for him. His only real side effects have been constipation and soreness where the shots are given.

It takes time to let all this sink in. There are times now that I get very frightened by this disease. This forum is a God-send. There are people here with a wealth of information and experience ready to help.

Take care – my prayers are with you and your dad,

sdrake

[sdrake]

Caroline,

I’m glad the Aranesp is working for your Dad. Who would ever think that we would have to worry about hgb getting too high?

I don’t have any answers, just questions. My Dad has been on Procrit since last February. It doesn’t seem to do much. When he is able to take Vidaza his hgb goes up, and his wbc gets really low. When his ANC gets too low, they delay the Vidaza, and his hgb drops again. He has had two transfusions in the last 6 weeks while waiting for the ANC to come back up. The whole point of this rambling is, I wonder if Aranesp would work better for him than Procrit.

sdrake

[sdrake]

Esme,

I am so sorry. I have sensed your strength throughout this fight. That strength will be there now, when you need it most. Hans was blessed to have you – and he knew that. My prayers are with you and your family.

Take care,
sdrake

[sdrake]

Thanks so much for the info. This forum is a God-send.

sdrake

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