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Dasatinib trials

Hi to you all and all our very best wishes for 2008. Havent posted for a while - Rio's pcr/abl results seem to have plateaued on imatinib and we feel as though we are in limbo. His dosage was increased from 200 to 300 mg (he is 14yrs old) a few weeks ago and so far no significant effect on pcr(tho more side-effects. Consultant will be increasing dosage again most likely at the end of Jan. SCT remains an option. It seems there are Dasatinib trials for children being run from Birmingham which Rio might be eligible for if the increase in imatinib doesnt bring the pcr down.Please could anyone give us some info on the realities of life on a dasatinib trial? How often do you need to attend hosp and what sort of monitoring do you undergo there? Does it take all day? What is the drug regime? I've found some info on the Cancer Research site, but its always useful to hear from people who are actually experienceing it. I'd really be grateful for any info you have!
Thanks, Kestrel x

Hi there,
My husband Gary is currently on Dasatanib. He started in October 07, 2 pills per day one in the morning and one in the evening. For the first month he attended weekly appointments, then they went to fortnightly and he is currently attending every 3 weeks, in fact we go again tomorrow where we hope he will then go every 4 weeks. He has had no bad reactions and has been monitored closely because of possible side effects concerning fluid in the lungs (although our Haemo. said they have never seen evidence of this first hand). He feels better than when on Glivec but does seem to be tired most of the time and a little fuzzy headed. He has a blood test at every visit and has had one PCR done. We arrive in Manchester at 9am and are usually done and dusted before lunch. He already has a small reduction in his log count. He is approaching 43 yrs and is a Double glazing installer which is very tiring on the body which may account for the tiredness. Hope this info is of help. RACHEL

Hi Krestel,

The best person to answer your questions would be one of the CML experts. The initial Dasatinib trials were pretty intense.

You haven't said what his PCR level is at. PCR levels continue to drop over time (check my signature). Depending on his size, 200 mg or 300 mg of Gleevec could be a sub optimal dose. I haven't heard a compelling argument to switch medication if Gleevec continues to control his CML.

What PCR level does your consultant want him to be at? Once he achieves a 3 log reduction there is virtually no chance of relapsing.

Zavie

Zavie Miller (age 69)
67 Shoreham Avenue
Ottawa, Canada, dxd AUG/99
INF OCT/99 to FEB/00, CHF
No meds FEB/00 to JAN/01
Gleevec since MAR/27/01 (400 mg)
CCR SEP/01. #102 in Zero Club
PCRU 5/02 at RVH (suspect)
2.8 log reduction Sep/05
3.0 log reduction Jan/06
2.9 log reduction Feb 07
3.2 log reduction Jun 07
PCRU 11/06 at The Ottawa Hospital
e-mail: zmiller@sympatico.ca
Tel: 613-726-1117
Fax: 309-296-0807
Cell: 613-202-0204

hi Kestral,
i am sorry to hear that Rio is suffering more side effects from the increase Glivec. his pcr will probably take a little longer to show any effect from the larger dose so do not worry too much as yet.
are his pcr's stable?

it may well be worth investigating the possible change to sprycel as the recommended dose has recently been reduced and that may suit Rio.

there are no easy answers and each individual has to find what is right for him/her.
i understand the frustration of being dependant on taking a drug every day of yor life... especially for such a young person.

all i can say is that you/he has to keep and open mind and try not to get too down. if his side effects increase too much then it may well be worth consider the offer from Birmingham. being treated within a clinical trial is often a good option. you can be very sure of the best monitoring and care.
best to you and to Rio
Sandy ;o)

M.P.Behn

Hi Kestrel and Rachel

My name is Teresa and my husband Mike was diagnosed with CML in Feb 07. He began his treatment with Glivec but has now built up a resistance to it and is now in the process of hopefully switching to Dasatanib. He is also 43 years old and we live in the SW of England. He goes into hospital at the end of the month for a stem cell harvest in case he requires them in the future. He also does a manual job which he also finds tiring. We share you thoughts about Dasatanib and the ongoing monitoring of its progress. We wish you the best of luck for the future.

Is a bone marrow or stem cell transplant/Harvest an option for Rio and Gary, Did their spleens enlarge also?

Kind Regards
Teresa.

Hi Kestrel
Same happened to me, have been on Dasatinib for just over a year, but only on a low dose due to platlets that have had too much punishment. I plateaued at about 80%-ve with Glivec, but now after a year I am down to a pcr of 1%, which I am told by Dr. M at Hammersmith, equates to 100%-ve cytogenetically. This reading has been held over tow visits, so now happy person. Once you are established and understand the drug, know how to recognise any problems, react properly to water retention isues promptly, you will be fine. I now attend every 6 to 7 weeks, but usually told to come back when I feel like. Suits me. My only hard problem with dasatinib, is unlike Glivec it makes me more that a bit irratable and bad tempered, have to really work to counter these.
It really is a great cml remedy and can recommend it to all my friends.
Have fun and keep smiling
Keith

Thank you to all who replied - some food for thought there. pcrs have been bobbling around - as low as 0.39 at one point, but now up to 0.7 and awaiting another result in 1/2 weeks. Psychological tolerability of any meds is an issue, but so is BMT at the mo - heigh ho, tomorrow's another day!
Best wishes to all,
kestrel