Looking to hear from APL long-term survivors

majito said:

Hello new apl
I'm sorry to hear that you got dx with apl, I'm not a long term surviver but I'm here to tell you that is not an easy road,but it's doable inwas dx back on 8/2009 I went through 3 in pt chemos was in the hospital 4 weeks got discharged then 2 weeks later went back did tha 2x, after that I did 10 weeks of arsenic, now on maintanance, I'm back to work full time I'm leaving a normal life of course it takes time for your body to bounce back, and get your full energy but I'm ok most of the days, I went into remission right after my induction chemo, indee I was told that apl has a great prognosis, I know it's not easy road, but there is a light at te end of this horrible tunnel, if there is anything I can help you let me know stay strong with a positive mind frame. You will be ok it's just a process but it's doable stay strong good luck with your next chemo dose.

majito said:

Consolidation chemo
Hello again new apl, I had 4 tx in total after the induction phase, two were done inpt the second one I was discharged at day 17 the 3rd one which to me has been the worst one I was discharged at day 27. Then as an outpt I had one iv pushed tx of indarubin which it was only one dose then I had 10 weeks total of trisenox arsenic which I has no side effects from it. I went m-f to the infusion cntr I had a break of 3 weeks after the 5th week then went back for 5 more weeks. Now I'm on maintace which includes only pills 3 different chemo pills one of
them is atra which I'm sure u were giving at your induction phase. About my biopsy it
was done 1 wk after I was discharged from my induction tx since some dr wait till your WBC r stable enough. Any other questions let me know. Ps I only had 2 weeks break between all my tx, except from the arsenic which it was 3 weeks

majito said:

You are very welcome

Hello I hope when my post finds you, you are doing well after your 1st dose of chemo, I do wish you best of luck and god be with you, not an easy road, but we have no other choice, so I wish that you have minor side effects from this 2nd round of chemo and that you can bounce fairly quick with out major set backs if there is anything else I can help you with you let me know.

ReubenC said:

Protocol
I'm curious about how long you will be on maintenance with your protocol.

It sounds to me like you went through an older protocol then I did. I was dx in 2007, and from what you described sounds like an alternate protocol from what I had. The protocol I was on was just being put into practice in 2007, so I'm wondering why you would be using the older protocol, I don't think we have a significant enough age difference.

The big difference is I had arsenic after induction with ATRA before the last two rounds of consolidation chemo. Then only a year of Maintenance with ATRA, 6-MP, & MXT. I would have expected to have seen more people with APL doing the same given the data behind it.

Are you doing biopsies or PCR tests? With APL a PCR is actually more accurate then a biopsies, and so much more pain free - only blood.

ReubenC said:

I'm at 3yrs 3mo in remission.

As my OC has explained, a PCR will show the genetic marker of the translocation of chromosomes 15 & 17 well before anything will show up in my marrow or any physical symptoms would present, should I relapse. So I wonder what literature you have reviewed is focusing on.

I've spoken to other OC's about it, at presentations and such, the feedback I've gotten is that relying on PCR's is still new and not a lot of OC's are on board with it. However when it comes to APL, and I forget the one other type of leukemia (not an AML), a PCR is the best use for early detection because it is looking for the genetic marker. Now I'm sure no test is always 100% all the time, even biopsies can produce false positives/negatives.

If you don't have much of a problem with biopsies, then my hat's off to you. I personally never want to do another one again. The two that I had, I bent the needle in both instances. The first time I had about 3 or 4 doctors on my trying to get it in. Took them several tries.

The second time was kind of funny because it was only a Fellow and a resident. The Fellow was showing the resident how to properly do a biopsy, only my bones weren't cooperating. Not the textbook procedure he was hoping to demonstrate.

LTSC123 said:

To everyone with APL
Hi my husband was diagnoied in July 07 and nearly died, had a count of 190. He survived and followed the spanish treatment followed by 2yrs of maintenance. 3mths after finishing maintance he started terrible headaches followed by loss of feeling in his leg, arm and face, at which point he was brought in to have an mri of the head which showed nothing and then a lumbar punture which revealed the cells had hid in his spinal fluid, this was april 2010 followed by aresnic, and spinal chemo twice a week about 30 in total, could not find a marrow match, so they manage to get his clear and then harvested his, then in octobre has a bone marrow transplant using his own cells with full body radiation. Only to find out 4 weeks ago all for nothing as his spinal fluid is still full of apl cells, so he is on the arsenic again and has had an omaya resevoir put in his head to spare him the spinal injections, he will have chemo twice a week into the resovoir, the docs say unlikely they will cure at this stage, but we are hoping if the just keep putting chemo into to spinal fluid it might get them all.......... well just want to warn you that it can spread to the cns and is could be in their quite a while before it affects you. my husband is now 43yrs and we have 2 little girls 3yrs and 7yrs and if I could see this cancer I would kill it. we continue to try and keep our spirits up not letting this c get the better of our lives. well must go to sleep hospital at 8.30am.