Looking to hear from APL long-term survivors

NewAPL

Hi there,
I just finished induction for APL and have been in the hospital for the last 6 weeks. It was pretty bad. The doctors tell me that the outcomes for APL are good but I could really benefit from hearing from some long-term survivors of this right now to give me a boost. Knowing there is some light at the end of those tunnel will really help me do the next batch of chemo.
Thanks so much everyone.

majito

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.

NewAPL

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.

Consolidation chemo?
Thanks for the reply Majito. When did they repeat your bone marrow to tell if you were in remission? How soon did you start your consolidation chemo and how was it compared to the induction chemo? Were you able to stay out of hospital for it?
Sorry for all the questions!

majito

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

NewAPL

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

Thanks
Thanks so much. I start more idarubicin today. I really appreciate hearing your experiences.

majito

NewAPL said:

Thanks
Thanks so much. I start more idarubicin today. I really appreciate hearing your experiences.

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.

NewAPL

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.

Thanks
Hi Majito,
Just started my last round of consolidation chemo this week, I am in morphologic remission and am waiting to find out if I am in molecular remission as well. It has been a rough ride. Thanks for your advice and support previously.

ReubenC

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

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.

NewAPL

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.

Hi ReubenC,

I will be on maintenance for 2 years, which is the standard still. I had the older protocol because I have a heart condition that makes me prone to arrhythmia, which makes arsenic potentially quite dangerous for me. Still, the PETHEMA trial used my protocol and achieved very good results. If I relapse they could always put a pacemaker in me and give me arsenic.
They do PCR on everyone now for monitoring, but it is just a question of whether you have it done on your marrow or your peripheral blood. I looked at the literature and there still isn't good evidence that peripheral testing is as good as marrow, although a lot of people are doing it. I figured I would keep going with the marrows for a while before switching to peripheral blood. The biopsies don't bother me that much.
How long are you disease free now?
All the best!

majito

NewAPL said:

Hi ReubenC,

I will be on maintenance for 2 years, which is the standard still. I had the older protocol because I have a heart condition that makes me prone to arrhythmia, which makes arsenic potentially quite dangerous for me. Still, the PETHEMA trial used my protocol and achieved very good results. If I relapse they could always put a pacemaker in me and give me arsenic.
They do PCR on everyone now for monitoring, but it is just a question of whether you have it done on your marrow or your peripheral blood. I looked at the literature and there still isn't good evidence that peripheral testing is as good as marrow, although a lot of people are doing it. I figured I would keep going with the marrows for a while before switching to peripheral blood. The biopsies don't bother me that much.
How long are you disease free now?
All the best!

New APL
I'm glad 2 c your r doing good, I'm still having those not so happy biopsies, my Dr dosent wanna move on yet 2 the peripheral, but o well we must do what we got 2 do. Good luck 2 you and 2 all our fellow fighters

ReubenC

NewAPL said:

Hi ReubenC,

I will be on maintenance for 2 years, which is the standard still. I had the older protocol because I have a heart condition that makes me prone to arrhythmia, which makes arsenic potentially quite dangerous for me. Still, the PETHEMA trial used my protocol and achieved very good results. If I relapse they could always put a pacemaker in me and give me arsenic.
They do PCR on everyone now for monitoring, but it is just a question of whether you have it done on your marrow or your peripheral blood. I looked at the literature and there still isn't good evidence that peripheral testing is as good as marrow, although a lot of people are doing it. I figured I would keep going with the marrows for a while before switching to peripheral blood. The biopsies don't bother me that much.
How long are you disease free now?
All the best!

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.

ReubenC

majito said:

New APL
I'm glad 2 c your r doing good, I'm still having those not so happy biopsies, my Dr dosent wanna move on yet 2 the peripheral, but o well we must do what we got 2 do. Good luck 2 you and 2 all our fellow fighters

I'm not telling you what to do...
I'm not saying you should go against your dr's orders, however it is your treatment and ultimately you are in charge of your care. If you have already reached remission and don't have some kind of complication that they expect you not to remain in remission. I don't see why there would be an issue.

Has your dr given you sufficient cause as to why you should continue with the biopsies?

NewAPL

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.

Way to go
3 years out...that is great. Keep up the good work!

It sounds like you have had a much worse time with the biopsies than I have. I can definitely understand your point of view with that kind of experience.

They do the PCR on both peripheral blood and marrow samples. With a marrow sample, you are sampling more cells than with a peripheral blood draw, so the sensitivity for detecting early molecular recurrence is theoretically higher. As of yet, I don't believe anyone has proven that PCR on peripheral blood matches the sensitivity of PCR on a marrow aspirate. I was offered both options, but opted for the marrow, at least for the first 2 years out, since treatment of relapse is apparently better when it is molecular only ("minimal disease"). Maybe someone will show they are equivalent soon and I will have done the marrows for nothing though - hard to know I guess. If I had had biopsy experiences like you I probably would have chosen differently.

All the best.

NewAPL

majito said:

New APL
I'm glad 2 c your r doing good, I'm still having those not so happy biopsies, my Dr dosent wanna move on yet 2 the peripheral, but o well we must do what we got 2 do. Good luck 2 you and 2 all our fellow fighters

Majito
Thanks a lot for your supportive posts earlier on in my chemo. Hope maintenance is going well for you. I am back at work now as well. Best of luck!

majito

NewAPL said:

Majito
Thanks a lot for your supportive posts earlier on in my chemo. Hope maintenance is going well for you. I am back at work now as well. Best of luck!

Glad to know your back not the new so call normal life
I'm doing good overall with my maintenance beside some bump in the road with some elevated lft's so I had 2 stop for a month 2 let my liver rest, now i'm back with my pills since november and so far my liver is acting normal,Glad to hear you are back to work, it definitely feel good to reclaimed life after so much up's and down's, I'm about 2 hit 1 yr of maintenance treatment and for the grace of god still in complete remission. I hope everything goes well with you in this bumpy road we must ride on, anytime if there is anything I can help feel free 2 ask me, Good luck with everything and best wishes in your maintenance treatment hoping it goes smooth for you.

LTSC123

NewAPL said:

Way to go
3 years out...that is great. Keep up the good work!

It sounds like you have had a much worse time with the biopsies than I have. I can definitely understand your point of view with that kind of experience.

They do the PCR on both peripheral blood and marrow samples. With a marrow sample, you are sampling more cells than with a peripheral blood draw, so the sensitivity for detecting early molecular recurrence is theoretically higher. As of yet, I don't believe anyone has proven that PCR on peripheral blood matches the sensitivity of PCR on a marrow aspirate. I was offered both options, but opted for the marrow, at least for the first 2 years out, since treatment of relapse is apparently better when it is molecular only ("minimal disease"). Maybe someone will show they are equivalent soon and I will have done the marrows for nothing though - hard to know I guess. If I had had biopsy experiences like you I probably would have chosen differently.

All the best.

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.

NewAPL

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.

CNS APL
Hi LTSC123,

That is really terrible news. My heart goes out to you and your husband.

Although my CSF was clear when they checked it at diagnosis, I received several intrathecal injections of chemo to prevent relapse in my central nervous system. I was told that it is a known place that the cancer cells can "hide out" when you are treated with intravenous chemo, and that prophylactic treatment via a few spinal taps can reduce the risk of CNS relapse to nearly zero. They said it wasn't part of the standard protocol per se but that more and more oncologists are recommending it, so I did it. I didn't have any side effects from that chemo aside from the discomfort from the lumbar punctures, but that was nothing really in the grand scheme of things.

I sincerely hope things turn around for your husband. Stay strong.