I will be starting the maintainence treatments in a few weeks of Atra 45mg/m2 for 1 - 15 days every 3 months, 6-mercaptopurine 90mg/m2 daily and methotrexate 15/m2 once weekly. I am struggling to overcome the final IV chemo treatments with neutropenia and fatigue and wondering how others are getting on with maintainence?? Thank you for replying.
I was diagnosed with APL 6/2005 and did the ATRA pills 80mg/day for 1 year without stopping. That was brutal to me. I think doing 15 days on/15 days off would have been more ideal. As long as you can look forward to those breaks I think it should be tolerable but people can react differently (for better or worse). The symptoms I had were severe migraines, swooshing in my ears, hot flushy feeling in my skin, thrush in the mouth, sores on the esophagus, fatigue, and I can't remember the rest... the symptoms stopped nearly immediately at the cessation of the ATRA pills. They must have a really short half life (probably why I had to take 8 a day).
Let us know how you do!
I am just past my first cancerversary... I was diagnosed with APL on January 13th 2010. My maintenance therapy consists 'only' of taking ATRA for 2 weeks every 3 months for 2 years. I am leading a very active and entirely normal life now. In May i will take part in a tri for TNT, and i couldnt be any happier.
Hang in there my friend... you are almost at the finish line!
I was diagnosed in Oct 2004. I'm now "considered cured." Seems I had similar maintenance. You're close to finished, so be thankful. Took about a year for me to work back to full strength, and have had normal life since. Believe it or not, I'm 6 years out and no longer think of cancer more than once every day or two. I didn't believe I'd get to this point, but you will too. And you'll better appreciate life. ATRA side effects can be tough -- I had headaches -- but there are medications you can take -- Xanax (we discovered by chance, when I took some because I could not sleep) worked magic. Xanax really helped the headaches so I used it while on ATRA for 15 days. If you're interested in talking, I'm happy to. I'm mid-40s male with wife and kids.
I was diagnosed with APL in June 2010. I have just started the maintenance phase with ATRA every 15 days every 3 months. I think I will be starting the 2 "M" drugs, methotrexate once a week and mercaptopurine daily. Can anyone tell me of the side effects of the M drugs? I get the headache from the ATRA but after a few days it subsides. I had induction with Idarubicin and ATRA last July, in the hospital for 5 weeks then 3 rounds of consolidation. Hospitalized twice with infections but feeling much better now. 5 BMB since being diagnosed. My platelets are taking forever to get over 100. WBC and hemoglobin are fine. Does anyone else have this problem with platelets. I'm worried that my counts are going to drop once the maintenance drugs start. Going back to work part time this week, a bit nervous, but looking forward to it. Just found this website and blogs, wished I'd seen them sooner during the dark days of winter during my chemo. Feels good to know you aren't alone with this disease.
I was also DX with APL July 2008. So I am coming up on a big three years in remisson !!!!!
I went through the ATRA regime for my maintenenace and although I had very little side affects during it - I did experience bad headaches. Everyone can and will experience differnt side effects. But just know that like you we all too were afraid at some point and have made it through. Keep your eye in the "end of maintenace" prize.
I did work part time too - but not until the last year of maintenace. You will always need to do what is best for you and your body and your recovery. If it means aything....Last year i trained for Team in Trainingand walk the Philadelphia half marathon in Nov while taking maintenace therapy. so keep your chin up and fight hard!!!
Feel free to message me or contact me if you ever need to chat!!!
I was diagnosed in June 2009. For maintenace, I took the two M's--for one year. 13 methotrexate once per week. On advice from a nurse I took it at night before bed. Sometimes the next day felt a little sluggish but better after that. I didnt have any problem with the 6MP--took that once per day for one year. But like you I got an Atra headache the first few days. (Mine was seven days on Atra, seven off--fouir pills in the am and four more in the evening) found that staying really, really hydrated helped with that and eventually by month six or so, the headaches all but stopped. Alos, on nurse's advice I took the Atra on a very full stomach and exactly 12 hours apart--the levels stayed really consistent and I think that helped with the side effects. Good luck!
ps did you do the Arsenic Trioxide treatment?
Marianne, it looks like we were diagnosed around the same time. Sorry, I didn't have your "M" drugs, I had Mitoxantrone and I think my headaches were from the ATRA. I finished my treatments in October. I agree with you on this site. When I was first diagnosed, I couldn't find any info on AML/APL. It's good to know that we are not alone. Best of luck with your maintenance therapy.
hi...oral medication for acute promyelocytic leukemia is usually atra.......I get it at the local compounding pharmacy, and it is $55 a day....this would be $18.000 a year if taken every day, but if the blood tests of pcr to pml/rara are negative, then you are cured, and do not really need to take oral medications...in china, they have oral arsenic , called realgar, which is quite effective 250mg po qid for 25 days, but this is not available here...the iv arsenic costs $500 a daily dose...=trisenox...or about $15,000 to save your life during induction...
there are other oral medications that will help, known as chemoprotectors... these can be found on pub med, internet, and of course it would be wise to avoid the known possible causes such as smoking and drinking.....in pediatric acute promyelocytic leukemia, the leukemia is induced in the baby fetus by the mother drinking alcohol......this is proven by checking the cord blood, although the leukemia often shows up a little later after birth...best of luck, trumbull
My daughter was diagnosed with APL in summer 2004. She finished induction and consolidation chemo in December 2004, and started oral maintenance on ATRA (vesanoid) for 15 days every three months for two years. Two other meds were also prescribed, but she had a reaction to them and got the OK from the oncologist to refrain from taking those two. I don't remember the names of the other meds. She tolerated the ATRA very well, with just occasional headaches, especially toward the end of the 15 days. She was able to work full time taking this medication. Of course, she was treated before arsenic trioxide was used in initial treatments. She had a very hard time with some rounds of chemo-- frequent neutropenic fevers, deep vein thrombosis, and autoimmune responses to the chemo drugs. She had also experienced swollen head and triple vision for awhile when on initial atra. All worked out well, though, and she has been healthy ever since. She is currently 45 years old.
Good luck to you as you move onto this next phase.
I'm 61 & was diagnosed w/APL in May 2009. Was in the hospital 2-1/2 months in mid-Summer 2009. Took ATRA treatment only 3 dayz in the hospital; couldn't tolerate it at all; it it sent me to ICU for 1 whole month. Then, I was started on 'Arsenic Trioxide' 2-hour chemo drips (10 mg medicinal dosage--lowest dose), going outpatient to a Cancer Center in Arlington TX, 3 dayz per wk (MWF) for 30 dayz at a time, which stretches out over about 10-11 wks; then, I'm 'off-chemo' 30 straight dayz at a time after that, until I re-start chemo yet again. I've been doing this same 'Arsenic Trioxide' chemo drip treatment schedule ever since. Can no longer work. The oncologist says my APL treatment will go on 'indefinitely' - whatever that means. I'm way past tired. Can't travel or plan for anything at all with friends. In Sept'2010, I was told that there is 'No Evidence of Disease' or NED as the charts/computer/files call it; in other wordz, there are no APL cancer cells in my body that can be seen under a microscope. So needless to say, the continuation of the 'Arsenic Trioxide' chemo drip treatments are going after any/all microscopic bits of APL cells that cannot been readily seen under the microscope.
I have yet to meet anyone my age, w/APL, who has been or is currently on 'Arsenic Trioxide' chemo drip treatments as I am still on at this time (2/14/11).
I wish you well.
TMW have you done a PCR test yet? A PCR test will be more accurate then a biopsy since they are actually looking for the translocation of chromosomes 15 & 17 instead of doing a hand count. Not to mention, it can be done with blood and no digging into the marrow.
If you haven't had this test done yet, talk to your doctor about it. I got lucky, my OC has done extensive research in APL and is one of the top experts on APL in the country. After I complained about having to have a regiment of biopsies and how painful they were for me, he told me that while sometimes they do like to get a good look at the marrow, moving forward we could switch to a regiment of PCR tests instead. I've had two biopsies and both times I bent the needle, not fun.
Reuben, I just had a PCR (polymerase chain reaction) test a few weeks ago. I was diagnosed with APL on June 2, 2010 and went through 8 bone marrow biopsies within a span of about 4 months (7 in my lower back & 1 in my sternum). Only about 3 of the BMB's were successful. I went for lab work on February 3 and then saw my oncologist for my 3 month check up on February 10 and I'm still in remission! My oncologist said that as long as the PCR test is negative, I don't have to go through another BMB!
That's terrible that you had to go through so many biopsies especially given the success rate. Was it that they weren't sure you had reached remission? Same info here, negative PCR no need for a biopsy. If I remember correctly, the PCR will tell them if the mutation is present. If it is the biopsy will tell them the state of the disease.
Tell me about it! I truly hope I never have to have another bone marrow biopsy again! They were all attempts at checking for remission. The first was done at our local hospital in Orlando and that was the worst experience I've ever had. I was then transferred to MD Anderson in Orlando and they would get diluted samples. My oncologist finally recommended that I get a guided MRI BMB and I won't go any other route. I'm under the same impression about the PCR. I'll just keep my fingers crossed each time I have that PCR test. I saw that you took ATRA for a year, I've seen other folks on this thread doing the same. I have to admit that I was worried at first because my onc didn't prescribe that for me. Not that I enjoyed the ATRA, I was just concerned if I was receiving the right treatment. So far, so good for me. I'm currently seeing my onc every 3 months. How long have you been in remission?
DoJoMoBo, I've been in remission for 3yrs, 3months. I know not all OC's will prescribe a maintenance round of ATRA or ATRA, 6-MP, Mtx combo. Some due to a patient etc. and some don't believe it's necessary. I think the data is a little conflicting on that issue, however my OC felt that due to my age and how well I was tolerating treatment, it would be better to error on the side of caution. It looks like you are getting close to your one year mark, which also means the chances of a relapse have gone down quite a bit. Don't fret over the results of your PCR, I know I did for the first couple, so gun shy about a relapse, now they feel routine.
I'm curious to learn what protocol some of you are on. I was dx Nov. 30th, 2007 and was put on protocol C9710, which had just finished phase III testing.
This started with induction 24/7 (or 7/3) along with ATRA, then 25/2 (25 days, 2 rounds) of arsenic prior to consolidation 3/2 (3 days, 2 rounds) of chemo. Maintenance consisted of 1 year of ATRA every other week (7 on, 7 off), 6-MP daily, and Mtx once weekly. I didn't tolerate the 6-MP very well, so adjusted it often, then ended up stopping it to let my liver recover - it took some time for the liver to recover that I opted to not continue it for the last couple of months.
Some of the maintinance plans listed seem quite varied, is this a newer protocol or older one?
Interesting.... I know that they are experimenting to treat APL with ATRA and ATO only... no chemo...
It really depends on who is treating you and how comfortable they are with the treatments...
I was on ATRA through the induction phase got ATRA syndrom and spent a few days intubated in the ICU...
ATRA was supended entering consolidation due to more complications... went chemo only for consolidation.
Now for maintenance I am taking ATRA carefully for 2 weeks every 3 months.... for the next 2 years...
So, I just had to look that up to see what the stats are. It looks like the studies have been very small, but promising. The initial survival rates look great at 75%, however there's no long term data as of yet - for me that's where the real money is. With C9701 the 3yr + event free survival shot up to 86%. If an ATRA/ATO (arsenic) only combo can hit the same or better marks, that would be great. I might not have specified, but all my chemo was complimented with ATRA too. So since you are back on ATRA the complications you had before were not related to an allergic reaction? Or more of a tolerance issue? e.g. excess cranial fluid buildup. Are you also on 6-MP and Mtx or just the ATRA for your maintenance?
ATRA syndrom is specific condition... It is related to the the reaction of the ATRA and the leukemic cells. something about that causes in some people to have permeable organ membranes. In my case, i had cardiac and pleural effusions. That initial incident caused for a recurring pericarditis which continued to creep up every few months until we got it undercontrol. we stoped the ATRA then out of an abundance of caution.
So, our working theory as of now, is that since i dont have Leukemia, i wont have any problems with ATRA syndrom. As of now, that seems to be how things are going... (knock on wood)
I take only ATRA for my consolidation, but when i do they watch me like a hawk
For some reason I thought ATRA Syndrome was more like an allergy, interesting that it's a reaction promoted by the leukemic cells. Sound's like there's some interesting molecular biology going on there. Glad you are doing better now with it. Though I didn't love the side effects, its hard to argue with the results!
I was in the hospital from May 31, 2010 until June 29, 2010. My protocol consisted of induction therapy - IV idarubicin & cytarabine (3 hours per day for 5 days) along with oral ATRA 10mg (5 capsules in the am & 5 in the pm) for 30 days.
My first month of consolidation therapy - had to be administered inpatient for 5 days with high doses of IV idarubicin & cytarabine. I also took oral ATRA 10mg (5 capsules in the am & 5 in the pm) for 15 days. My second month of consolidation was outpatient IV Mitoxantrone (my nurses called it Smurf juice due to the bright blue color) for 5 days (15 minutes each day) and ATRA 10mg (5 capsules in the am & 5 in the pm) for 15 days. My third month of consolidation was inpatient for 6 six days with high doses of IV idarubicin & cytarabine. I also took oral ATRA 10mg (5 capsules in the am & 5 in the pm) for 15 days.
My maintenance therapy was ATRA 10mg (5 capsules in the am & 5 in the pm) for 15 days.
I just saw my oncologist a few weeks ago and I'm happy to say that I'm still in remission!
Please tell me if I'm off, but your treatments seem rather aggressive. I'm surprised you had to be inpatient for some of your consolidation and that the you were given high doses even then. Do you have some other complicating factor, age, or not quite responding?
I've not heard of Mitoxantrone being used to treat APL, not that I'm an expert, but it feels like it sometimes. My chemo's where Daunorubicin (7days) and Cytarabine/Ara-c (3days) for induction, consolidation was just the Daunorubicin (3days) at the same dose as induction. Again, all with ATRA, 4 pills am, 4 pills pm.
Reuben, you are not off. The last several months have been a "blur" to me, so I don't feel that treatment was aggressive. However, when I saw my oncologist post treatment for a checkup and mentioned how I was still weak, etc. he explained that I had received aggressive chemo and it would take a while for me to "get back to normal". I don't believe I have any other factors, I feel that the doctors just learn to tweek treatments by patient. I was treated at MD Anderson in Orlando. I was diagnosed 2 days after being hospitalized for a TIA, then was transferred to MD Anderson and feel that I received the best of care. I was 44 at the time of my diagnosis.
I was diagnosed with APL in August 2010 (at 25 years old). Spent one month in the hospital for induction therapy. I had three rounds of consolidation therapy (one was a one week inpatient round) and had to be admitted to the hospital two other times, each for about a week, for neutropenic fever. I also had 6 lumbar punctures w/ intrathecal chemo. I started maintenance therapy (ATRA, 6-mp and methotrexate) about two months ago. I think the 6-mp makes me pretty nauseous but it is getting better. I had to stop all pills for about a week because they caused my #s to go too low, but it looks like they are stabilizing now. I am supposed to be on maintenance for 2 years. Other than the slight nausea, I don't even think about it! I got 2 big pill boxes to help me organize and it is working out great. I have been back to work full time for 2 months now and I've only had to be out sick the 1-2 days following my last 2 LPs.
Hi Dale! I was diagnosed in 2009, June. I had Atra, 6-MP and Methatrexate for one year---Atra one week on, one week off. It got better each month, less tired, less headaches. I found that if I ate well--little salt or sugar--and drank a lot of water all day the side effects of the ATRA were much better. Staying hydrated is key i think. --hard part is overYou will be fine. Take care of yourself and rest and let your body heal.
To everyone out there--anyone else come in with white count 80,000+ like me with very few symptoms when diagnosed?
I just signed up today and am reading this thread. My wife was diagnosed in Jan 2011 and spent 26 days in the hospital for induction. Immediately with Idarubicin + ATRA... She also experienced ATRA syndrome which caused her to spend 3 days in ICU....lungs filled up with fluid. She is 33 and had just completd an IVF cycle. ...she completed IVF and achieved pregnancy, 10 days later she was no longer pregenat and about 2 weeks after that she was diagnosed with APL. She had some bruises that mysteriously showed up but otherwise felt fine, we went to her primary and a blood test showed AML...the subsequent bone marrow test proved to be APL. The timeline with the IVF process-to-APL diganosis seems curious, but I guess that is better suited for a different blog. The compelling reason for my entry today is that my wife is exactly at the stage where you were when you started this. She has just completed her 3rd round of consolidation IV chemo last week and will be taking her last dose (for this round) of ATRA this evening - today is day 15. Her induction consisted of 5 days Idarubicin + 30 days ATRA (26 days in hospital). She had a 2 week break and then began consolidation: 1st round - 4 days Idarubicin + Cyterabine (outpatient) + 15 days ATRA (80 mgs) , 2nd round - 5 days Mitoxantrone + 15 days ATRA, 3rd round - required a one night hospital stay- 1 dose of Ida + 4 doses of Cytarabine every 8 hours + 15 days ATRA . Her consolidation has been pretty rough to say the least....the worst was round 2 with the "trone", she experienced especially harsh side effects. She has needed several blood therapies between induction and consolidation. Her final marrow test is this June 9th to confirm remission is still in place and we can proceed with maintenace....and sounds like her maintenance will be similar: ATRA every 90 days + a daily drug which I can't remember and a weekly shot of something else. I hope that you got through consolidation and are succeeding on maintenance...God bless
Sorry for what you are going through. I cant speak to the treatment your wife is having because mine was a bit different (diagnosed in June 09 and had the Atra/arsenic treatment) But I can tell you that your wife has the worst behind her--the maintenance will go fine. Worse at the beginning, I found, but each month I felt better. After her BMB in June, you guys can take a deep breath and start living your lives again. I am sure you have been told that APl is the most treatable of all the leukemias and I bet she will be just fine. It sounds like she is lucky to have you. Hang in there!
(interesting about the IVF--I too had fertility treatments, although they were 15 years prior to my diagnosis and unsuccessful)
I'm curious why your wife needed several blood therapies between Induction and consolidation. I don't recall myself getting any blood products after the second week in the hospital.
Three consolidation rounds, what a trooper. I'm glad she is on her way to maintenance now. Was she having a difficult time maintaining remission? Those doses seem a bit strong for consolodation from my experience.
While maintenance is a world away from induction and consolodation, it's important that she takes the time to get used to the medication in combination with her strenght. Someone once said, "the recovery isn't a linear progression", and not to lose hope on days that take a few steps back. All the best!
hi....my wife caught acute promyelocytic leukemia june 1,2001 and was cured of apl in 24 days at uc davis,sacramento using no chemotherapy, just atra and arsenic, a very gentle treatment with no problems, and she is being moniter with pcr to pml/rara which is so far negative...has had no consolidation therapy, no maintainence therapy and is doing fine....we are not doing bone marrows, as peripheral blood is very accurate using pcl,and monitering this test every three days by sending to the mayo clinic lab is a excellent way to moniter....if it is caught again, then a repeat of atra and arsenic will be given...she avoided the harsh chemotherapy of daunorubicin, so wont have the problem of secondary cancers or secondary leukemia caused by the daunorubicin...
this therapy method is used all over the world in china, india, iran etc...but in europe and the united states traditional time proven cures used daunorubicin and atra , and arsenic is used only for relapse...but now it appears it can be used first line, so I wanted to share the good news.. best of luck, .trumbull
I was Dx in March of 2011. I have completed my induction therapy and was out of the hospital in about a month. At that time I had a Bone Marrow Bx and I am in remission. Just had another to confirm that I am still in remission and the good news is that I am.
I finished 2 cycles of Arsenic over the summer and hoping on Monday I will start a cycle of Daunorubicin and Atra.
When were you Dx with AMP?
How are things going for you?
I am located in Central WI and getting treatment at the Marshfield Clinic.
Talk to you soon,
Looks like I am one week ahead of you in the treatment schedule.
A few posts earlier, someone mentioned just treating with ATRA + ATO. And I've now met someone on that plan. I have one more round of Daunorubicin to go in consolidation. Before I started the Dauno consolidation, I talked to my doc about, basically, not doing it. I really am uncomfortable with the whole concept of cardiomyopathy and secondary cancers from the danua (plus IDA in induction), but my onc is insistent that the long term survival rate is higher when anthracyclines are added. He told me they recently had a patient who was five years in remission relapse. he hadn't received the anthracyclines as part of his therapy. I feel really scared about this whole latent side effect thing, and if anyone wants to share with me rationale for why I shouldn't have anxiety (beyond it's better than not being cured from APL today), please feel free...
It is of course a very anxious time...all I can say is try not to worry about what might happen--and will likely not happen--and just focus on getting better. You've gotten great treatment and the success rate is very high. I had some heart damage from the Dauno and it has now reversed itself for the most part-in due to healthy diet and moderate exercise and in fact I plan to run/walk a half-marathon this June, almost three years from my diagnosis, to raise money for LLS! So hang in, focus on the now, take good care of yourself and you'll be fine. Best of luck!
I was diagnosed with APL in September. I am on the LPA 2005 protocol. Has anyone else done this? It started with 4 days of Idarubacin combined with ATRA for induction. That put me into complete remission. The consolidation treatment has been a bear though. Low counts...tachycardia...mouth sores...the list goes on and on. Right now I'm starting phase three of consolidation. Mitoxantrone 3 days (10mg/m2/d). Not looking forward to it. Has anyone gone through this protocol? From here I have one more round of Idarubacin (2 days x12) then two years of Atra and the 2 M drugs 15 days a month. I'm real concerned about that part. Can you live a normal life? I really need to get back to work and support my family ASAP.
Hi my final phase or oral meds Atra etc. were different but certainly you can live a normal life--I didnt feel great the first few days of Atra but then got better each time as the days passed ( I found that a low-sugar, low salt, low fat diet helped plus lots of rest) but I was able to work on the Atra. Keep fighting!
I went back to work after my bounceback from my 3rd chemo session;(after 120 days when my longterm disibility kicked in, but before 6 months off, as I I didnt want to lose my job. and basically tried to ignore the effects of the 4 th; chemo session. Atra was not overly negative, as long as I didnt take it for too long at a time.
After 6 months back at work, I lost my job any way, they had already replaced before I gone back to work, They didnt need me and figured they couldnt rely on me to stay healthy. i think the job ( the Employer) wasnt worth keeping anyway.. I found much better job with much better pay, same line of work, i went on to make more money than i had ever before, I was a survivor and some employers appreciate that. any way that was 10 years ago, and now I am semi-retired, at 59.
Hey Art.Thanks for speaking up. I too, am a survivor that has been there with a previous employer. Had to go back into treatment after returning to work, and during second round, got KO'd by employer etc. I am back to work now with a new company. I just started so the jurries still out, however I feel like you. I am a two year survivor, with a positive attitude. I'm fifty-two and I have a tremendous amount of hope and am really looking forward to my future! By the way, I am an AML survivor. I've had a bone marrow tansplant from a blood relative, (sister) and so far it is working. God bless.