Clorfarabine Clinical Trial Began 1/7

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• January 9, 2008 at 2:57 am #20005
  cherylm

  Member

  Hi all, I’ve posted a few times about my dad who was diagnosed with mds back in May. His recent bmb showed a blast count at 25% ! In May it was 11%, by October 13% and as of December 25%. OK so that’s the bad news. If you recall, he tried Vidaza with no result. I looked into a bunch of clinical trial studies accross the country and found one in Texas at Anderson with this drug, Clorfarabine. An FDA approved drug for pediatric leukemia. Turns out a new study was opening at Presybterian Hospital, Weil cornell Medical University, NYC. My dad was accepted into the trial and began his treatment on Monday. We are in NYC for the week so the doctor can monitor him during his first round. The drug is taken by mouth each day for 5 days. 3 weeks off. It has had an 80% positive response rate. I will keep everyone posted. After 2 doses he’s doing good. No nausea or bad side effects (yet). BTW, he is 70 yrs old. Keep your fingers crossed… Cheryl

  January 9, 2008 at 4:44 am #20006
  eve

  Member

  cheryl

  wishing your dad success with this clinical trial – who is heading this trial

  eve

  January 9, 2008 at 5:49 pm #20007
  cherylm

  Member

  Hi Eve,

  The doctor at cornell who is heading the study is Eric Feldman. The drug company is Genzyme. It is a two dosage random study, my dad got the lower dosage, but I’m actually glad. I was worried the higher would be too much for him.

  Cheryl

  January 9, 2008 at 6:04 pm #20008
  jaxem

  Member

  cheryl
  good luck to your dad!! keep us informed!

  January 9, 2008 at 10:09 pm #20009
  lynette

  Member

  Hi Cheryl,
  Dr. Feldman was my Mother’s oncologist. He did everything he could to get her into remission and give her hope. He was always upbeat, and that is exactly what my Mom needed. Good luck!
  Lynette

  January 13, 2008 at 6:04 pm #20010
  cherylm

  Member

  Hi All

  We are back home this week. We had successfull treatment with the clofarabine. No major side effects. My dad is a little ‘beat’ but that’s to be expected. We’re going back to see Dr. Feldman on Thursday for a check up, so we’ll see what he has to say. I think he expects to do a bmb after completion of the second round (in three weeks). Keeping our fingers crossed.

  I see that there is a one day MDS program at Anderson in Texas! I wish I could go! I see Drs. Kantarjan and Garcia-Manero are both speaking. Both were so helpful and gave me so much info on the clofarabine trials. Dr. Feldman even consulted them regarding my dad’s case.

  I’m going to see if I can get a transcript after the event. Is anyone planning on attending??

  Cheryl

  January 14, 2008 at 5:20 am #20011
  kami

  Member

  Hi Cheryl,

  I happy to hear that your dad is doing well.(I love hearing the positive stories…we NEED MORE OF THEM.)

  There is also a trial for Clorfarabine at MD Anderson, that starts in about a month(I think)
  How is the chemo administered to your dad…I thought I read that it was oral…is that correct? They just recently put my dad on Thalidomide at 50 mgs…but his MD mentioned that he was in contact with the lead doctor in Houston for that trial, and that my dad was eligible for it.
  The only problem is that he has to fly to Houston and stay there.(Which my family is not very comfortable with.)

  Either way, it’s very early to see how he does on the thalidomide(and his dosage is very low,so we’re waiting to see how he responds to the medication.) I wonder if this would be an option in the future.

  January 14, 2008 at 2:21 pm #20012
  cherylm

  Member

  Hi Kami,

  The clofarabine is taken orally. 7 pills a day for 5 days. I am aware of the trials in Texas. In fact, when I started researching the drug they are who I contacted first because they seemed to have had the most experience with it. Both Drs. Kantarjan and Garcia-Manero were very personable and I would not hesitate to contact them. You may also consider contacting Genzyme to see if they have any clinicals planned closer to your area. We had to stay in NYC for the first round of treatment. They had to monitor his blood counts closely for the initial treatment. When we start the second round, we will only need to go to NYC for the first day, the remaining 4 days he can take the treatment home and be monitored by his local doctor. My dad stared at RAEB 1 10% but progressed very quickly. Vidaza did nothing. I plan to keep the group updated on so at least you will have the info if it comes to that. You can email me anytime if you have any questions, also.

  Cheryl

  January 22, 2008 at 2:36 pm #20013
  cherylm

  Member

  Just wanted to post an update of the clofarabine trial my dad started on Jan 7th. – He went for a check up on Jan 17th and his counts were very low. WBC was .1…needless to say, they admitted him to insure he didn’t spike a fever or pick up an infection. He is still in the hospital and has been pumped with blood and platelets. Hemo is good 9.2, but wbc is still only at .3. Looks like he’ll be staying put for the time being. He’s had some issues with fluid and has been given diuretics, but again not suprising with all they’ve been giving him. Second round is scheduled for the first week in Feb. I’ll keep you posted.

  Prayers are appreciated!
  Cheryl

  January 22, 2008 at 2:52 pm #20014
  jaxem

  Member

  cheryl
  i’m thinking about him & wishing him all the luck & prayers!! what is the period of time that he is taking the pills (didn’t see it anywhere); monthly? how many rounds before bmb?

  January 23, 2008 at 6:44 pm #20015
  cherylm

  Member

  Thanks Jack, I appreciate the wishes. I hope your wife is doing good as well. As for the clofarabine treatment, it is oral. 7 pills a day for 5 days. then 3 weeks off. 2 rounds before another bmb. My mom and brother are in NYC with my dad today. He ran a slight fever last night, but back to normal today. His counts cme up a bit but now dropped a bit again. WBC 0.4, Hemo 7.9, Platelets 8 He’s going to get 2 units of blood and 2 platelets today. Major trouble seems to be the fluid retention. He’s only got one kidney so they need to be very careful.

  January 31, 2008 at 4:16 pm #20016
  cherylm

  Member

  Hi All,

  Just wanted to post a quick update on the Clofarabine trial my dad started on Jan 7th. For the most part everything went great. There were issues with fluid retention and kidney counts (he only hs one) and the ususal low blood and platelets. The first round ended Jan 11th and they did a bmb yesterday. The preliminary results indicate a big drop in blast count; from 25 to 6. Doctors are going to do another bmb early next week to see how things look then decide how to procede. We’re still waiting to see it his counts start to come back up. In the meantime we continue with blood and platelets…..Cheryl

  January 31, 2008 at 7:16 pm #20017
  gemloyear

  Member

  Hi Cheryl, Your Dad’s Clofarabine trial sounds very promising.I’m praying for a successful treatment for him.
  Take care, Ellie

  February 3, 2008 at 7:01 pm #20018
  jaxem

  Member

  cheryl
  happy all is going so well. keep up the reporting/let us know the latest bmb results.

  February 3, 2008 at 8:53 pm #20019
  jas174

  Member

  CLOFARABINE! Cheryl, We are pretty sure this is the drug my husband will get very soon. We do have to stay during the treatment of 5 days. His induction chemo brought the blasts down quite a bit, but not enough, they are creeping back up. Dr. wants to use that drug, then go directly to a cord blood transplant. A visit to the Dr. on Feb.7th will tell. I have many questions to ask…don’t know where to start. It seems that if no questions are asked, no info is given other that a general explanation. It is so encouraging to see that your Dad is doing so well with it. It gives us hope. Prayers for you and yours and us!! Thank you! ————————————————————————-Husband 61,MDS 9/06. 6 rounds Vidazamonths then dacogen,danazol,revlimid etc.no response. 12/07 transformed to leukemia, very high blasts, waiting for a plan and cord transplant. Praying hard.

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