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

First a very short Anita update; Anita is doing great!! She is 8 months post transplant and while her treatment wasn’t easy, we are fortunate to be where we are now in terms of her health.

Anita just had a clear PCR test result come in today – this was most welcome news. The test result means that there is no detectable trace of cancer in Anita’s blood right now.

You are never quite out of the woods with leukemia – it can always come back but a negative PCR test means that you are probably in a very high state of remission.

This post is going to wander a bit from the specific topic of APL. That’s OK though because there are many aspects of APL that are similar to any life threatening disease.

From time to time I am going to grab posts from the LLS forums that may be of interest to the APL community. There is a tremendous amount of helpful information on the LLS discussion forums, but like any busy forum, only the most current stuff is readily visible and older posts just get buried and lost over time.

So here we go – I am going to spotlight a lengthy thread about my hero “Zach Man” Zach is a 25 yr old guy that is seriously fighting for his life right now. He is fighting a very aggressive form of AML that isn’t giving an inch of slack or respite. Throughout the early part of the post, Zach is rolling with the punches, dealing with his treatments as well as can be expected. Pay special attention to his post on 03-13-2008 04:19 PM though. Zach is 25 yrs old and seems ready to give up the fight and “head home.”

Please read Zach’s post and I want you to think about what it would be like to have a brother, spouse, or any loved one in his position. It happened to me – it could happen to you too.

I want to stress that I deeply respect any decision Zach might make in terms of giving up the fight or carrying on…

So here’s the post… (note that I’m pasting only part of the post here ). Zach’s CaringBridge page is here too: http://www.caringbridge.org/visit/zachmc

How can you help Zach?

I encourage you to wish him well, but the unfortunate fact is that we can’t do much for Zach. The good news is that he is being treated by one of the best cancer treatment centers in the world – MD Anderson in Houston TX.

Cancer can’t always be successfully treated for individuals, but through collective effort we can make progress, slowly moving toward better treatments and more successful outcomes that will give individual patients a better chance of survival in the years to come.

Please take the time to learn more about cancer and how you can make a difference. There are many great resources to reach out to.

Here are a few for you to consider:

• www.leukemia.org
• www.livestrong.org
• www.acs.org
• http://www.marrow.org/

There are countless ways we can all help.

Remember when you support health related causes you are really giving to the entire world. Improvements in cancer treatments eventually reach many areas of the world, indeed reaching some areas better than others (yet another problem).

Chris

Anita’s white cell count has been decreasing quickly over the past few days. It dipped below 500 today and will likely be close to zero within a few days.

It is completely expected to see Anita’s white count dropping now. She finished her chemotherapy about a week ago so the drop in her counts is essentially right on schedule.

Her counts should start rising within a week or so as her re-infused stem cells get back to work re-creating Anita’s immune system.

Lots of scary “potential stuff” comes along with low blood counts. Dr’s refer to low white blood cell counts as neutropenia.

I have been spending weekdays at City of Hope then coming down to San Diego on the weekends. The end of the weekend is nearing now, so I am leaving in a few minutes for the City of Hope (about a 2.5 hour drive).

Hopefully Anita won’t develop any infections while her white count is bottomed out. This week will be a little bit dangerous for her but at the same time her Dr’s are well prepared for any troublesome bugs that might try to take hold.

Right now, Anita is very tired and doesn’t leave her room each day. Her spirits are good and despite all the discomfort and pain she just refuses to complain about much of anything.
One of Anita’s Dr’s told me a while ago that her counts would probably recover faster after this transplant than they did five years ago after she underwent traditional chemotherapy.

Immune system stem cells are amazing – those little cells that were re-infused back into Anita after her strong chemo are basically “seeds” that will grow back into a re-formed immune system for Anita. You can think of the marrow, which is especially found in the long and large bones of the body as the “soil” that the stem cell seeds will grow from.

What puts the “stem” in Stem Cell?

Blood system stem cells are pluripotent which means that as they grow and divide the cells that they produce can grow up into all the types of cells that make up everything in your blood.

Think of a flower, it starts with a stem then rises from there to leaves, flowers, and whatever else – same idea.

** Please join with me in fighting APL and other cancers. Ways you can help:
- Remember Cancer related charities as part of your charitable giving.
- Pray for Anita and all other people suffering from life threatening disease.

- Donate Blood and register as a potential bone marrow donor. Every time you donate blood it saves a life – I have seen the impact of life saving donated blood coursing into Anita many times.

** Lastly, please check out a few of these videos from the City of Hope website,

Walk of Hope

and,

A few Patient Stories from City of Hope

especially check out: The Marshall Cotta Story and “Meeting my Lifesaver” from the above link.

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.

Hello APL Survivors,

Let’s work together to build an Information and Support website for AML type M3.

I think APL is unique enough to warrant this type of resource.

There is extensive information on the web about APL but most of it is scattered widely in a low density format across various discussion forums and of course many scientific articles. The problem is that there isn’t a well organized resource for APL that tries to tie much of it together.

The LLS forums are a fantastic resource and I am not looking to replace the LLS forum for APL patients and caregivers. I have turned to the LLS forums many times throughout my 5 year experience as a caregiver for my wife’s APL and they have been invaluable.

I was inspired to setup the site through Anita’s experience with APL. I believe there is an opportunity here to extend Anita’s experience with APL toward helping others with this difficult disease. Anita’s story will be a part of the site but over time I would like to see the site become more generalized.

Their isn’t much on the site yet but that can change quickly. Usually the approach with this type of blog based site is to start accumulating content, perhaps within some loosely defined categories, then work to organize and refine the content along the way.

The site is up and running right now at,

http://www.baysidenetworks.com/aplblog/

If you would like to post an article, please click the “login” link in the upper right hand corner of the site and register an account for yourself. You can post content right away. Anything you post will go to the top of the site and will be visible for everyone right away.

I have already registered the domain name – aplblog.org and will be moving the site to that address within a few days.

Over time, with your help, this could become an extensive site with a lot of APL related resources and information.

You are welcome to post any APL related story or information – to begin with I think it might make sense to get as many “survivor stories” posted as possible, with any details regarding your treatment that you might like to share along with any comments on how APL changed your life. Post what you like though – this is your forum for APL.

Let’s work together to help APL patients and caregivers with this new resource.

My email address is chris@baysidenetworks.com. I am happy to help with editing articles or assist in any other way that might be needed toward building the site with your help.

Chris

** Many of my friends and clients have asked how they can help. Here are a few ideas…

* Donate blood and or platelets. When Anita was treated in 2002 she needed a few blood product transfusions and it is very simple – each time she received blood it saved her life. Would you like to save a life? Donate blood.

* Pay attention to your own health. Urge your family members to do the same.

* Donate to the health related cause of your choice. Some of my favorites include the:

• Leukemia and Lymphoma Society – www.leukemia-lymphoma.org
• Lance Armstrong Foundation – www.Livestrong.org
• American Cancer Society – www.cancer.org