On to Clofarabine

[jaxem]

Well, the dacogen+valproic acid didn’t work for my wife as her blasts are up to 15% (manual count)from 8% as measured 4 months ago. her monosomy 7 secondary cancer has become quite stubborn to the dacogen. The next best thing emerging is clofarabine, an aml developed drug, which has been shown a lot of promise to be responsive in up to 45% of patients. I have written to Cheryl whose dad had taken clofarabine recently. he had responded favorably to clofarabine but unfortunately passed on due to other issues. My wife had her 1st round yesterday with no side effects. We even walked around the nurse’s station for about 1/3 mile for exercise. The hospital had a nurse sitting with her the entire day to monitor her reactions. This was the 6th patient they have had on clofarabine but it is very toxic and ablative (kills all blood cells). The scary thing is that some patients have not recovered from the rounds in that their stem cells do not begin to make new blood cells. She will get one round/day by injection (IV) for 5 days, wait about a month and have a bmb to assess results. I was taken aback when I learned that the cost of clofarabine is $50,000/round, and she needs 5 rounds. WOW!

[Jo L.]

Jack –
I hope your wife has good luck with her new treatments. May all the prayers and good thoughts from everyone on this forum help it do it’s magic. And I agree – WOW! I thought Dacogen was outrageously priced at $20,000/round.

Jo

[annie-anne]

Jack
Sending good thoughts to both of you, hang in there. Will constantly think of you in the next four weeks. This may be it !!
Annie-anne

[kami]

Jack,
That wasn’t the news I was hoping to hear about Cheryl’s dad…

From my very LIMITED understanding, clofarabine is said to be as potent as inductive Chemo(MEC…or IDEA chemo) but easier on the body.

From all of your past posts, your wife seems to be a WARRIOR, she’ll be just fine.

Hang in there!!!

k

[jaxem]

My wife completed Day#2 of 5 days. Day#2 wasn’t as pleasant as she had nausia & back pain which were alleviated with adavan & IV morphine. She got a call from our grandkids which greatly lifted her spirits. You have to “suit-up” to see her with booties, mask, lab coat & gloves because of the infection danger as her counts are going way down. Never had this with other chemos. Again, my biggest fear is she becomes aplastic (stem cells won’t make new blood cells) after treatment.

jo: I looked back at my medicare bills and saw the billing at around $6500/day for dacogen but this was administered by an outside nursing/pharmacy contractor, not a hospital. Our hospital said $50K/day is what they were paying for the drug. Will be interesting when i see the bill come through what medicare winds up paying for it.

thanks for everyone’s good thoughts!

[Jo L.]

Jack –
Holy cow! I thought you meant $50,000 for the whole 5 day cycle! John gets his Dacogen at his hemo’s office and it lists on the bill as $4,032 per day so it’s $20,000 per week – thank goodness for Medicare.

I hope you have at least one really goofy nurse or aide taking care of your wife, you know, the kind with silly jokes or quick puns. Laughter has a way of healing that meds alone can’t do. My advice – stop at the party store and buy several pair of black rimmed glasses with fake noses. It will make those gowns and masks look less frightening from her viewpoint. Then take pictures for her to look at after she’s out of the hospital to extend the laughter/healing.

Good luck to you and your wife.

Jo

[deb m]

i have to agree about laughter. when my dad was in for his SCT, the mask he had to wear when walking in the hallways looked like a duck bill. so i used a black marker to add two dots on the top to resemble the nose holes. it was very silly but my dad wore them that way!
Jack, i’ve been praying for you wife and watching eagerly for good news. please keep us updated.
deb

[poppyshope]

Jack,
Good luck to you and your wife and I am sorry the other treatments did not do what you had hoped. I will keep you and your wife in my prayers. Keep those calls from the grankids coming I know that when my dad was doing inductive chemo we had a board with my kids pics and even one of my dog who poppy loved! They made him artwork and tapes with songs… grandkids make fighting on easier! Again, take care, Jen
ps where are you doing the Clofarabine? NYPresbyterian?

[jaxem]

3rd day of 5 day treatment completed with the same nausia as day#2. taking both zofran & adivan by IV which seems to be working. also sleepy & groggy.

deb: thanks for the prayers! I’m hoping for good news in about a month when they do the bmb.

jen: also thanks for the prayers. every bit helps!
no, doing it at home hospital, Temple Fox Chase in Philadelphia. Clofarabine is not a trial drug anymore. any approved blood treatment facility can use it. My wife is about the 7th patient they’ve done.

[MNladyslipper]

Jack,
Sorry to hear the blasts went up. My husband has been in the hospital for the last week with acute diverticulitis. He was in an isolation room. Some were very cautious, others we had to remind to wash and glove up. They did not need to gown us or wear masks unless they were sick. His neutrophils are at a .2 today. He goes back to Rochester Mayo tomorrow for another bmb to see if the Revlamid is working. We will discuss on Friday the results. Please know that you and your wife are in my thoughts and prayers!

[jaxem]

Day #4 was the same as Days 2&3 with nausia, and neck & back pain. Today was Day#5 (last day of chemo) and I was surprised that she was feeling better. She stayed awake & talked for most of my visit. Her right side hand & leg was a bit swollen with the hand showing a bit of skin peeling. Not sure what that’s about but was told that several other patients on the drug experienced the same. she got platelets yesterday to boost her to 37 today, and 2 units rbc’s since her hgb was down to 0.73. she has a chance of going home in the next day or so even though her wbc’s are down to 0.2 (and anc’s at 0). then we wait for about a month or so, hopefully while the @#$! blasts get eaten up by the effects of the clofarabine.

MNL/S: thanks for your prayers. I’ll take all I can get!! sorry about your husband’s diverticulitus. that is very painful.

[cherylm]

I know I’ve not been around since I lost my dad, but it is just been hard to read about everyone. Jack, please keep me posted on your wife. If you have any questions on the clofarabine please email me. My dad did have some swelling but the clofarabine did a job on the blasts! I’ll keep you and your family in my prayers. Cheryl

[jaxem]

cheryl
it is good hesring from you again on the Forum. Again, let me extend my condolences re your dad. happy to hear the clofarabine decreased his blasts. re swelling, my wife experienced “hand-foot syndrome” brought on by the clofarabine. Other patients have experienced this swelling when taking other chemos. Today at Day#7 (2 days post clofarabine), the swelling has gone down a bit & she is in better spirits. Thanks for the prayers and try to stay in touch. You have some unique experiences with this ugly disease that you can share with Forum members.

[Harold P]

I am sorry to hear Your wife is having a difficult time with her treatments working. My husband (61 on 5/9/08) was diagnosed 2/08 with MDS, RARS, monosomy 5 & monosomy 7, secondary (due to prior chemo treatments in 1998 for Non-Hodgkins Lymphoma). The MDS doctor at the Mayo Clinic in Rochester, MN recommended a mini stem cell transplant & to start on Vidaza. We live in Des Moines, IA so my husband’s oncologist/hematologist in Des Moines, IA started him on his first round of Vidaza last Tuesday, 4/8. He will have Vidaza for 7 days in a row & off for 4 weeks & back on Vidaza for 7 days etc. He only has 1% blasts & the only problem he currently has is low hemoglobin . He has not had to have any transfusions because his hgb hasn’t ever gotten below 9. His hgb has been running anywhere from 10.1 – 10.8. We are headed back up to the Mayo Clinic on 4/21 to see if my husband is a good candidate for a sct. The doctor said this is his only chance for a cure. We will keep you posted on what the doctor says.

Tell your wife to hang in there. Be strong & positive. We will keep her in our prayers.

Sincerely,
Pete & Sandy Peterson

[cherylm]

Thanks to everyone for the kind words and prayers sent to my family. I really want to try to stay active on the boards. We’ve been thru a lot for sure and if there is anything I can do to help out anyone else I’m more than happy to do it.

Jack, Please keep me posted on your wife. Where did you say she is getting her clofarabine treatment??

Cheryl

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