September 1, 2006 at 6:02 pm #14747
I took my first dose of Zarnestra today, I take it for 21 days, off for a month or until counts recover, then repeat. Starting with platelets at 72, wbc 43.7.
JackSeptember 1, 2006 at 7:25 pm #14748sdrakeMember
I’m sure you have addressed this in a prior post, but why Zarnestra and not Vidaza or Dacogen? I’m interested to know since Dad has CMML too, and Zarnestra hasn’t been discussed. Good luck with it. I hope it does the trick.
ShariSeptember 2, 2006 at 9:39 pm #14749
Jack: Please keep us posted on the Zarnestra Trial. I just inquired about that for Mike with Loyola Univ. in Chicago.
I think taking away the “food source” is the best idea yet. It seems as though medications are now being geared more to control than to kill. Did you have any type of “enyzme” test done before starting on Zarnestra? I do not know if there is such a thing but would be interested in knowing if there is. Good Luck!September 3, 2006 at 12:15 am #14750
We CMML patients are all different. With me it is normal reds, low but stable platelets, and very high Whites. My counts have stayed the same for 3.5 years other than the WBC. They started at 3.2 and have gone as high as 46. The concern is what this is doing to my organs. I have no symptom other than an enlarged spleen. The problem is that some of my Chem Panel numbers are increasing, such as Uric Acid, and LD which is three times what it should be. They didn’t think Vidaza would help my condition. Zarnestra is designed to block protiens that make malignant bone marrow cells grow.
I don’t know of an enyzeme test, perhaps someone else could comment on that. I do know that Dr. Venugopal is in charge of the Zarnesta study at Rush in Chicago. He is a great guy, I saw him when first diagnosed and send him my CBC results once in a while, he always responds. I didn’t go to him this time because Omaha is much closer.
JackSeptember 3, 2006 at 3:24 pm #14751shirlsgirlMember
Best of luck with Zarnestra Jack! I look forward to reading your updates. Any side effects so far?September 12, 2006 at 2:57 am #14752
Just curious about how you experience with Zarnestra is going. Hope wellSeptember 12, 2006 at 3:18 am #14753
Thanks for asking. I have been on it 11 of 21 days. So far no real problems. After seven days my counts were unchanged, the platlets were up a little and the whites down a little. I asked if this was a bad thing because they expected my counts to go way down, they said it was a good thing and they didn’t want counts to drop to quickly. Now I have a probelem with Potassium being to high, they will recheck it on Friday. The only neg so far is a constant heartburn, noting I can’t put up with. I cound take Nexium or something, but I would rather not.
JackSeptember 12, 2006 at 3:56 pm #14754
Good Morning Jack:
Nice to hear you are doing well with the Zarnestra. As I mentioned, it seems to me that starving this thing to death is on the right track. Keep me posted!
SandySeptember 16, 2006 at 8:31 pm #14755
Just completed 14th day of Zarnestra (Tipifarnib), my whites are down to 32.1 from 42.5, Platelets unchanged at 88, Reds still normal. Uric Acid and Potassium back in normal range. Kidney tests lower but still above normal. I have had no negative response to the drug and feel great. I may go into the second 21 day round with no delay, in the beginning they said I would have to wait at lest 30 days for my counts to rebound. Plus I have a new grand daughter, today is a good day.
JackSeptember 16, 2006 at 9:46 pm #14756
It is a Great Day! We have a 4 month old grandson, who is cuter than you can imagine. Our first!
So glad you are doing well with the Zarnestra.
Mike and I visit his Hemo/Onc. on Monday in Indianapolis. Wants to talk with us about a few options.
Thanks for the update and kiss that beautiful new baby one time for us.
SandySeptember 22, 2006 at 6:53 pm #14757
Just completed first 21 day round of Zarnestra.
Whites have dropped from 43 to 21, reds are normal, platelets 74, I’m off for two weeks then second round. Could not be more pleased at this stage.
JackSeptember 22, 2006 at 7:58 pm #14758shirlsgirlMember
Woohooo!!! Fantastic news Jack!September 22, 2006 at 10:53 pm #14759BkwitsMember
Wonderful!! Greatt to hear some good news here.
BarbSeptember 22, 2006 at 10:56 pm #14760TerriMember
Great News Jack, I am glad this seems to be doing so well. Bob does not have CMML but recently his whites were up to 77 about a month ago. And now down to NORM.September 23, 2006 at 12:34 am #14761SuzanneMember
So glad that drug may work for someone.the researchers have high hopes for it. I surely had very little problem taking it for a year to try to prevent relapse. And what a pleasure- a tiny tiny pill!
Register for an account, or login to post to our message boards. Click here.
- You must be logged in to reply to this topic.