9 replies to this topic

[ericafergie]

Hello!!  My son, 3 years old, was diagnosed with Very High risk Pre B cell ALL on June 28th 2011, we recieved the news on July 8th that he was Ph+.  He is on gleevec..    From what we are told my our docs is that Ph+ ALL is very rare and most compared to CML.  I just wanted to chat with you all as well ...and ask advice on something.  About 5 weeks ago Tyler go a nasty fungal, fusarium.  They had to stop all chemo ..including his gleevec. The said they had to stop the gleevec bc it can interact with anti fungal meds. Now is BMA looked clear so they started him back to chemo, including gleevec, last week.  Has anyone had a month hold on gleevec, or is anyone on a antifungal that interacts with gleevec?

[Trey]

Sorry to hear of his rough road.  Almost none of us are taking standard chemo, just the Gleevec, Tasigna or Sprycel.  There are only a couple Ph+ ALL folks here on the TKI drugs, and Ph+ ALL in infants is extrememly rare.

To see if there is a drug interaction,  you can use a drug interaction checker.  Here is one example:

http://www.drugs.com...teractions.html

Checking randomly on antifungal Amphotericin B and Gleevec there is no interaction.  Other antifungals have an interaction which causes Gleevec to stay in the body longer, acting like taking a higher dsage of Gleevec.  This is the most likely iinteraction, if any.

Here is a good rundown on treatment for Ph+ ALL for infants:

http://www.justcance...-treatment.html

http://www.cancer.go...fessional/page6

If you need any help understanding treatment options or sorting out issues related to treatment, please just ask.

Hope all goes well for you both.

[Happycat]

Erica,

No advice, but just wanted to let you know that I'll be keeping Tyler in my prayers.  We all feel deeply for the young ones.

Best wishes to you and your family, and most especially little Tyler.

Traci

[grannyd]

My thoughts & prayers are with you & Tyler during this most difficult time. Sending prayers for all of you. granny d

[jskerry]

hi Trey

i'm julia i've just been diagnosed with ph+ALL  i'm 61 (hopefully will get to 62)..i'm scared and beyond terrified..i can't find any ph+ all survivors and your post was the first mention i found here.  .i just started treatment - i've had two chemo treatment and am taking sprycel - i go back to the hospital NYU in nyc on tuesday for 10 days for more intensive chemo - chemo to spine and hopefully will be in remission awaiting either bmt from donor list - or more chemo 5 days a week once a month....julia

jskerry@aol.com

[Susan61]

Hi Erica;  I can only send my thoughts and prayers also, as I am not up on ALL and what all of this entails for you.

You can be sure Trey will give you the best information you can possibly get on this board.

Susan

[Susan61]

HI Julia:  My prayers go out to you also, along with Erica and her little son Tyler.  Just keep in mind that there is so much more they can do for all these crazy cancers, that they could not do years ago.  I wish you well in your treatment.

Susan

[Teresabourgeois]

Praying for you Ericia and Tyler.

[Trey]

Julia,

Ph+ ALL leukemia is a more unstable disease than CML, and therefore it is often not   as responsive to TKI drug therapy as CML.  But some can take the drugs and remain on them for extended periods.  It is nearly impossible to know if any given person will respond to the drugs over the long term, which leads many to go with the bone marrow transplant.  But Sprycel is probably the best drug for Ph+ ALL, and it is possible that it could work for a long period.  Only time will tell.

Here is some info on BMT:

http://community.lls.org/docs/DOC-1375

[vickicorinne]

Our son Dylan diagnosed age 9 now who is 11 did stop his GLEEVEC one time during his journey . The reason explained to us was the very same. Other medicines would counter react to the GLEEVEC . He also was stopped  on the GLEEVEC to get his blood numbers back up Hope this helps some . Prayers our way