APL, Information and SupportInspired by Anita’s Journey through Acute Promyelocytic Leukemia

I was hoping that Anita was be able to come home early to mid this week. That isn’t in the cards now.

Starting last night, Anita developed a low grade fever which seems to have crept up a bit more through the day today.

The fever may not be anything to be very concerned about. It is possible that her body temperature is up a bit from the arsenic as it works to clear out the cancer cells. It is also possible that an infection has become active in her system.

If her fever today is an infection, I am hopeful that it won’t take a strong hold as her white blood count has been increasing steadily over the past few days. Her white count is actually starting to approach the bottom end of the range that is considered “normal” as of today.

I told Anita today that all those new white cells she is producing will soon “kick some ass” on the fever. I think that re-assured her because she remembers all too well dealing with many days of neutropenic fever when her white counts were very low in 2002. Unfortunately, fevers are common whenever your immune system is knocked down as a result of leukemia or the efforts to treat it.

Neutropenic fever is difficult and can be dangerous. Your whole body feels very different when it is feverish and not being able to shake a fever for days on end is difficult psychologically and physically. Lengthy fevers are also profoundly tiring. You can quickly end up feeling like the fever will never end. Of course the fever will end and you just have to always repeat to yourself that all aspects of this suffering, or joy associated with good news, is just temporary.

The length of a fever can be directly tied to weight loss and a wide range of nasty potential complications. It’s not so much the fever that is very dangerous, it’s more the lack of normal immune function, and the susceptibility to infections that poses the largest risk. Nurses and Dr’s that treat cancer patients are very accustomed to managing neutropenia – it is a well known enemy for cancer patients.

Usually fevers can be beaten back with strong antibiotics so that is good news. They are frustrating though and you can find yourself checking your temperature all too often as you worry that “the fever” might have returned.

So many of the events with Anita’s relapse, like today’s fever, resonate with painful and difficult events that occurred when Anita was treated the first time. Even if the events are a bit different this time, I find myself saying “Oh, not that again. I remember what that was like and it was awful!” Ignorance offers some emotional protection when you don’t know how bad all this can get – you don’t have that “benefit” the second time around.

When Anita’s leukemia gets difficult, I try to think about the temporary nature of the specific problem she is dealing with. That is a key coping method for me – I always know that none of these problems are permanent, and are normally short term issues. I try to think about the temporary nature of all things, then read a few success stories of people that have “made it through.”

I suspect this little bout of fever won’t last long. I also know that I will very likely be returning to this subject again after her SCT related chemotherapy- which is still looming on the horizon.

Basically Anita can’t leave the hospital if she has had a fever within 24 hours – so no parole from the hospital at least for now. This is unfortunate as she really wanted to come home today.

Oh well, with this delay, it will be all the sweeter when she does finally come home. I use the term “come home” loosely though, realizing that she will be spending 5-6 hours at the hopsital per day to receive her treatment.

Hi. My name is Billy. I was diagnosed with APL in December of 2005.

I was in the hospital for 5 weeks in January and 6 days in March. I’m now in remission and and on maintenance therapy since April of 2006. I take 2 mercaptopurine a day, 1 methotrexate a week and vesanoid (the worse of the 3). I take 10 vesanoid pills a day for 15 days every 3 months, which I just finished taking the other day. I have 18 months left of this maintenance treatrent.

I was first diagnosed with leukemia in early 2001 (Chronic lymphocitic leukemia). I went through 8 months of rituxin and fludarabine therapy for CLL. I relapsed about 18 monts later and went through rituxin ,fludarabine and cyclophasmine and trasformed into APL. I’m 49 and live in N.Y.C. Hello to everyone ! Thank you for this message board.
Billy

This is just a note to wish you (and everyone with Leukemia in the world) a speedy recovery and to let you know that my friends and I are praying for you.

I think this is a great web site to share information on this type of Leukemia and I hope it helps many people.

With love and best wishes, Eric Gruenwald

Anita is feeling pretty well today and her white blood cell count has improved slightly. She may be able to leave the hospital early this week, allowing her to continue her treatment as an outpatient.

She is walking several times per day around the hospital, usually for 30 minutes or more each time. I am always amazed that I don’t see more patients trying to walk in the hospital – keeping active seems to help Anita’s spirits and it just isn’t good to spend too much time in bed.

If you know someone in the hospital that is able to walk, and you would like to help them, try to encourage them to walk – and take the time to walk with them.

Anita continues to tolerate her arsenic treatment well. I am thankful that she has had minimal side effects so far. The only complaint so far is that it is difficult for her system to clear all the fluids they infuse into her each day, she has gained a small amount of water weight as a result. This is really more of an annoyance than any sort of problem and it is a common side effect for Arsenic and heavy IV based therapy in general.

* Anita’s arsenic treatment, a few thoughts

One point on the arsenic and the rest of Anita’s infused therapy – we have found it helpful to ask the hospital to try and give her medications at roughly the same time each day. This seems like a minor thing but setting up a routine at least help create an environment that you can work to get used to.

The “regular times” issue has come up mainly with Potassium infusions. Ideally she receives one Potassium infusion in the morning then another in the mid afternoon before her Arsenic. A few times, the morning Potassium dose was delivered late, forcing her to receive two Potassium doses just before the Arsenic – all in one continuous and large infusion.

Basically it is hard on Anita to have so much fluid pushed through her system in such a short time. When the infusions are bunched up all together at the same time, she seems to feel worse and take on water weight more quickly.

I plan to describe the routine for Anita’s outpatient arsenic treatment in a future article. Anita’s arsenic regimen is standard for APL, but I think anyone that is due to receive arsenic will appreciate at least one patient’s detailed accounting of what it is like to receive this unusual drug.

* Anita’s upcoming stem cell transplant

Some my earlier posts talk about the stem cell transplant that Anita is to receive after her Arsenic treatment is complete. She will be receiving her transplant at the City of Hope in Duarte, California, which is about 140 miles away from our home. It isn’t uncommon to have to travel for a stem cell transplant – there are a limited number of large treatment centers for marrow transplantation and the City of Hope is the 3rd largest transplant facility in the world.

Anita has 8 siblings and I expect several of them to be tested this week for donation compatibility with Anita. My understanding is that each sibling has approximately a 25% of being a perfect match for Anita. There are a few factors in play that could change this, but I believe the current plan is for Anita to have an Autologous transplant. The sibling tests which would be used if an Allogenic transplant is needed, are hopefully just part of a backup plan at this point, in case an Autologous transplant turns out to not be the best course for Anita.

Transplants are by no means routine or very safe, but they offer a second chance at life for many.

Here are a few stem cell transplant links from the City of Hope website,

History of Stem Cell Transplants

A few success stories from City of Hope’s transplant program – Remember the Anissa Ayala story from 1991?

I am doing what I can to get ready for Anita’s stem cell transplant. So far, much of my effort has been toward exaustively cleaning our house. When Anita comes home after her SCT, it is important that the house be as clean as possible. With two dogs and a busy life, our house has a ways to go until it means the cleanliness guidelines recommended by the NMDP (National Marrow Donation Program).

It will be great for Anita to be home, but I also know it will be difficult because of all the things she will want to do, but shouldn’t, because of her condition. Anita was trying to explain to me today that she wants to help clean the house when she gets home and that it will be fine “with her mask on.” Oh well, it will be tough to change her mind so I am trying to make sure everything is clean before she gets here.

I want to thank you for making this site on APL survivors.. I’m one of them- they call me the miracle mann and million dollar man. I was hit with APL in April of 2004. I relapsed in Sept 2005 and in CR since then. I want to let anyone that wants to talk about there story or to say hi, I would love that. I went through the ringer at first. I was at Stanford hospital and had a bad reaction to the chemo and was put in a coma for 15 days. While in the hospital a total of 89 days and had a mild stroke -double bleeding ulser and blood clot in my leg all within a month, I’m here to tell the story. More to come LIVESTRONG and WE WILL ALL GET THROUGH THIS.!!!!

Hope to hear fro some more survivors and GOD BLESS

PAULY

Some people, that will never develop leukemia, test positive for the presence of cells with leukemic translocations. This is not a new discovery, it has been known for a long while. Here is an article that discusses this fact:

http://dceg.cancer.gov/pdfs/janz362003.pdf

One possible suggestion from this is that a healthy person’s immune system may keep the development of full blown leukemia in check. Another possibilty is that unknown factors, possibly additional cell mutations, beyond the known genetic markers that are used to test for the presence of leukemic cells actually trigger the much unwanted cancerous growth associated with active leukemia.

There have been a few cases where twins eventually develop the same form of leukemia, one as a child and the other in late adulthood. With two genetically identical people, why did one develop leukemia so much later than the other? Something kept the leukemia in check for many years- what was it?

Another similar observation is that some very long term bone marrow transplant survivors (10+ years) continue to test PCR positive for the presence of their original leukemic cells, yet they never seem to relapse. Why? (MichaelM from the LLS discussion forum pointed the twins and long term survivor observations to me)

Anita continues to fight her relapsed APL.

The first phase of her treatment is the daily administration of a drug called Trisenox. She is to receive 30 days of arsenic treatment, followed by a short break, then another 14 days, another short break – then off to the City of Hope for a Bone Marrow Transplant.

Trisenox is very highly purified Arsenic and it is very effective in the treatment of APL. Of course arsenic is also a deadly poison so it has to be administered carefully. Thankfully, most of the potentially serious side effects can be recognized early enough to be managed successfully.

Anita receives her daily medications in a lengthy infusion sequence that takes about 6 hours from end to end (sometimes a little less). It starts with Potassium and Magnesium infusions, then she receives pre-medications to help avoid nausea from the Arsenic infusion, then the arsenic itself. So far, she hasn’t experienced much discomfort from the medicines, certainly nothing similar to the discomfort from the more traditional chemotherapy she received in 2002 when she was initially treated for APL.

When Anita started her Arsenic treatment it was certainly frightening, probably more for me as I had read about all the potential complications in such detail. Certainly complications can occur from Arsenic therapy but many of the accounts of very difficult problems with Trisenox relate to earlier use of the drug, perhaps before present monitoring techniques were widely used.

If you are facing arsenic treatment you shouldn’t be terribly concerned about the side effects. If your medical team watches you carefully, especially for the first 10 days of treatment, you should be fine. I would encourage you to ask your Dr. how you are to be monitored during Arsenic treatment – our Dr. had a very good explanation when I asked this question – yours should too. Don’t be surprised if your Dr. has never used Arsenic before though – its use to treat cancer here in the US (at least in modern times) is very new and is still considered unusual and rare.

We all need to be very thankful that Arsenic treatment even exists for APL – it serves as a life saving therapy for many. There was actually a recent article on Trisenox based treatment for APL, based on the result from a recent clinical trial. There is also increasing interest in the possible use of Arsenic for other cancers but so far APL seems to be the best application for Trisenox. Arsenic has a long history of use as a drug – it has been used in various ways for thousands of years.

Anita is actually allowed to leave the hospital for short periods of time now. I walked down to the supermarket near the hospital with her yesterday. She wanted to buy cookies for the nurses in her ward. Anita has to wear a mask when she is outside due to her semi low white blood cell count but she did just fine on her walk.

I believe Anita may be able to receive some of her remaining Arsenic treatment as an outpatient. This will be interesting though as the infusion sequence is lengthy and the infusions need to take place in the hospital each day. If you search for other patients and their account of arsenic treatment you will find that outpatient therapy with arsenic is fairly common, at least after the first week or so.

There is alot going on other than the arsenic treatment. One of my main projects has been to intensively clean our house. After the Bone Marrow Transplant it is very important that Anita come home to a clean environment.

Getting through cancer is alot of work!

Chris

Anita continues to tolerate the Aresenic treatment well.   The only side effect I notice so far is a little bit of fluid retention from all the IV fluids they are pushing through her.   She continues to receive her treatment in the hospital where she can be closely monitored, receiving Potassium and Magnesium as needed to combat the possibility of heart problems from the Arsenic treatment.

The arsenic treatments consist of a sequence of infusions.  Normally the infusions start at about 2-3pm each day and are done by around 10:30pm.   She receives potassium and magnesium infusions for one or two hours, then pre-medications to help assure that the arsenic won’t cause nausea, then the arsenic itself.  There is no pain involved with any of this so far and the only annoyance is the slightly cold temperature of the infusions as they enter her PIC line.   Of course there is still plenty of time for side effects to develop, we are only on day 6 here.

Anita’s Dr wants her to remain in the hospital for now, but he allows her to leave for up to four hours per day so long as she wears a mask.   Today, I brought Anita’s Australian Cattledog down for her to see – his name is Meenya and Anita was certainly happy to see him.  The dog was all to anxious to kiss Anita but of course we couldn’t allow that with her low-ish white count level.

Hopefully the days will continue marching on here and will be uneventful for a long while. 

After the arsenic, Anita will be heading up to the City of Hope in Duarte, CA for a bone marrow transplant.    All the specifics aren’t figured out yet but this is going to take some planning.   I am going to look into all of this carefully in the weeks to come.

Chris

 

Hi Chris,
I’m so sorry to hear about your wife’s relapse, but I’m proud to stand here with you in solidarity.My dad was diagnosed with APL in March of 2004, and through all my research in that frantic time, I was comforted by the fact that APL was unique for its very low relapse rate. So we were shocked when he relapsed nearly 2 years to the day in March 2006.

My dad’s relapse was more complicated than most because leukemia cells were also found in his central nervous system. So in addition to the usual protocol of arsenic, he received cranial radiation as well as intrathecal methotrexate injected into a port implanted in his head (I know, doesn’t that sound gruesome?). But my dad was a hero and his treatment, thankfully, was successful in eradicating the cancer. He achieved molecular remission in April. He was found to be PCR negative for the PML/RAR-alpha transmutation as well (You might already know that this is really important for APL, so be sure your wife gets PCR testing after she acheives remission! There are some really good explanations about how this test works in other areas of this forum)

I remember the bone marrow transplant consultation that I accompanied him to. It was really scary to learn about the long treatment process and the even longer recovery time– allogeneic was a little more daunting then autologous. And since all my dad’s siblings are in Taiwan, the allogeneic situtation would have had to be even more complicated by international travel. I referenced to the doctor a few papers about relapsed APL that I had found, and I’ll post the links here!:
http://www.jco.org/cgi/content/abstract/23/1/120
http://www.nature.com/bmt/journal/v28/n3/full/1703119a.html
http://www.bloodjournal.org/cgi/content/full/90/3/1321

The general consensus in the literature is that PCR negative APL patients have really good outcomes with an autologous stem cell transplant, while patients who convert to PCR positive should elect for the allogeneic route.

My dad’s BMT doctor initially recommended the allogeneic, but after a few days and conferring with her colleagues, they agreed to go autologous instead. So, my dad received his autologous transplant on July 19. His story was complicated by severe neurological setbacks as a result of the intrathecal methotrexate, but that’s a WHOLE other ballgame (neurologists, neuropsychologists, MRIs) that I might tell in another post. Aside from these difficulties, my dad went through his auto SCT with flying colors– he was in the hospital for exactly 30 days and he’s currently on no medication.

Most importantly, today, he’s recovered (miraculously!) from his neurological condition, and his last blood test showed his counts in the normal ranges post stem-cell transplant! We had a scare this week because his doctor had told us his PCR was “weakly positive,” and so we’re still praying that it’s a false positive since his bloodwork, energy level, well-being are so awesome.

I know your wife will come through like my dad did. I’m so sorry that you guys are back on this roller coaster, but, as Tex said, you’ve done it before and you’ll do it again. Thank you so much for your efforts in putting together the APL blog. Information is so powerful! An avid Googler myself, I really appreciate that. Please let me know if there’s anything I might help with, and I’d be honored to contribute.

Hi Chris,It sounds like Anita and I were originally diagnosed with APL around the same time. For me, it was September 2001. I had ara-c, daunorubicin and atra, and had an induction and 2 consolodations, followed up by atra maintenance for 2 years.

After 26 months in remission, I found a small, but very dark, bruise on my outter thigh and just knew it was a leukemia bruise. The next day I had blood work and my wbc had dropped to 1.8. My counts from the blood test 3 weeks prior were completely normal. I then had a bmb to confirm and my doctors were certainly surprised that I had relapsed after 2 years.

I was admitted and the same induction was started that I originally had in 2001. Unfortunately, this time it didn’t work. Next they tried arsenic (was not available here in Canada at the time, but dr got special approval for me and ordered it in from South Carolina). I received it everyday for 28 days (2 hour IV per day) as an outpatient and a week later the bmb showed complete molecular remission. I did not have a sibling match, so they decided to do an auto-bmt. I had the harvest and then 2 weeks later started the chemo for the auto-bmt. I received my cells back on June 14, 2004.

I have great faith in the arsenic after my experience with it. I have met another lady on these boards who relapsed after 3 1/2 years in remission and then received arsenic as well and acheived a second complete molecular remission.

Best wishes to you both, LisaP.