[SandyB]

You both will be in our thoughts and prayers.

Mike and Sandy

[SandyB]

Pat,

I will keep my fingers crossed too! Mike is taking Kytril and it has been wonderful. The only side effect is constipation and he takes metamusil and that helps. We are lucky our insurance covers Kytril too. It is normally $50.00 per pill.

Wanted to let everyone know, that yesterday, our Dr. said he thinks we are dealing with MDS and not AML. Please pray he is right.

Mike’s counts are still low, and on Monday they will decide whether to start treatment again, or try and take an extra week off to see what happens. He is only getting .75mg per dose instead of the 150mg. The Dr. is apprehensive about increasing just yet since everything is so down.

[SandyB]

Thank You Ladies. I appreciate the input.

I talked to the people at Pharmion today, and they were very helpful. During our conversation I thought it was odd that they said many persons got their injection with two needles. But, Terri are you saying that Bob gets 150mg each day that he gets the injections? In that case Mike is only getting 1/2 doses.

BTW, we hit 3.0 on whites today. First time since Oct. 20, 2006. I was so excited! Platelets were only 16 and that is worrisome. HGB hovering between 6.5 and 7.2. No transfusions yet.

[SandyB]

Immune Thrombocytopenic Purpura (ITP), is an autoimmune disorder, where low blood platelets is the main symptom.

It is treated with Cyclosporine. Maybe you could ask your insurance representative, if they cover the drug for use in this disease. If so, what is the difference in covering it for one disease and not the other.

[SandyB]

Eve,

We just read your message and were very saddened.

Please accept our deepest sympathies, and know you and your family are in our thoughts and prayers.

Mike and Sandy

[SandyB]

Good Morning Everyone:

Mike is on his second Vidaza Treatment. He is on 5 days on and one week off. His counts are still low, so they are being cautious.

My questions: How many treatment cycles did it take before counts started coming up? Which of the counts came up first?

Thanks in advance for any feedback.

[SandyB]

There is a Center of Excellence in Indiana, as well as a Dr. of Excellence there.

The Center is: Indiana University in Indianapolis.

The Doctor: Dr. Larry Cripe

We travel from Chicago to see him and have been doing so since October, 2006.

Dr. Cripe is very good and worth seeing in our opinion.

[SandyB]

Great News Jack! We are excited for you and think that Zarnestra sounds very, very promising. Keep up the great work!

[SandyB]

Thanks KWJ and Patti. I am just not thinking so straight right now.

FYI: Found out that a small study at Loyola Univ. in Chicago, combined Vidaza and Mylotarg to treat 13 people. 11 with AML, 2 MDS. All patients over 60s year old. Results: 10 of 13 put into remission. 9 still in remission for 2 to 13 months so far in the tracking.

Spoke aboutit with our Oncologist today. He thinks it is a good idea for us, but we are all going to do more research before making a decision. He is recommending that we start the Vidaza first and see how that goes and then if well, add the Mylotarg.

Anyone else familiar with this study or studies like it? I would love to hear if you have.

[SandyB]

Patti:

Do you have a link to the board you are speaking of? I’d appreciate it.

[SandyB]

Sandy:

Mike not only had full induction chemo, he also had 1 consolidation. Achieved 100 % remission.

He did have three Maintenance Chemo with Ara-C injections, along with Mercaptapurine pills. It started dropping his counts too much, and now his counts have fallen further, and we are waiting to hear results of BMB.

I will email you personally with induction process he went through.

We think of you often, and appreciate your concern for us at such a difficult time for you.

Sandy

[SandyB]

Thank you Terri and Maureen. This drug seems promising. We are still waiting for official BMB results.

Thanks again,
Sandy

[SandyB]

Sarah and Willie,

May you both feel the closeness of your loved ones in the Christmas Spirit.

May all of us be blessed with love, understanding and miracles this Holiday Season and the rest of our days to come.

Merry Christmas.

Mike and Sandy B.

[SandyB]

Such Great News! We wish the best for continued strides. Have a Great Holiday. You will be in our prayers.

Mike & Sandy

[SandyB]

Sandy,

We are so very, very sorry. Been with you both in prayer from the beginning.

Will continue to pray and be with you and your family in spirit.

Regards,
Mike and Sandy B.

[Author]

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