What to do during "Watch and Wait"???

[David M]

All,

Like many of you are (or have been), I am in "watch and wait" mode... my blood counts have been slowly declining over the past 10 years -- more or less predictably. It appears that I have MAA at this point (last count: platelets = 36, RBC = ~2.9, HGB = ~10.2, Neut. #: ~1.2)...

I don't know if this is a legitimate thing to do or not, but I took my CBC readings from the last 5 years and sort of extrapolated where it appears things will be in the next 5 years. If things continue as they have (and of course, who knows what is going to happen!), here is what it looks like could happen... In about 2.5 years (possibly less), my platelets project to be below 20K. HGB projects to be around 8.0, and Neut's project to be around 0.5-0.8. I know these are "guess-timates," and things can change unexpectedly -- for good or ill. As Yoda said to Luke Skywalker: "Difficult to see, the future is."

But regardless of what happens in the future -- here's my question: What should I do? I am sort of in "watch and wait" mode... that's a given, but what should I be doing during this time to prepare for what appears to be an inevitable "showdown" some day?

There are lots of folks on this forum who have been where I am. Maybe you did not have a lot of time during your "watch and wait" phase, but I thought maybe it would be a good idea to tap into the collective wisdom of the people on this forum and get some suggestions. What do you suggest I do to prepare?

Thanks for your suggestions, and I look forward to hearing what you have to say!!!

[Laura]

Call the NIH in Maryland. They have trials for patients with MAA. They will pay for all the treatment. It is not a guarantee to work but it is something you can do. That way you don't have to "watch and wait". The two trials were Daclizumab and Rituxan.

Laura

[Lisa V]

David, one of the things about having SAA is that you don't have the luxury (or agony) of a "watch and wait" period. As soon as my husband was diagnosed, he was treated, BAM! Blood tests a year or so earlier had been all normal.

I wasn't aware of it at the time, but having MAA really is a different sort of scenario, for better or for worse. Waiting is frustrating, and at first I didn't understand why doctors would not give ATG at the first sign of pancytopenia. Now I get it; it's because ATG doesn't necessarily return you to full normal counts. Often it just puts you back into the MAA category. As long as you are not requiring transfusions it's considered a success. Still, I think there are some doctors who are experimenting with giving ATG for MAA, just to see if it can turn it around before it becomes SAA. I don't know what the results have been, but it might be something to research.

Basically, if you are considering trying any alternative or "non-standard" treatments, now would be a good time to try them, when you don't have so much at stake. Some people have shown varying degrees of improvement following strict nutritional guidelines, Chinese herbal remedies, etc. If you wait until your counts are so low you're being transfused, however, the chances of any lifestyle changes bringing about a sudden dramatic turnaround seem pretty slim. At that point, you have to start looking at the big guns: ATG, BMT, hy-cy, etc.

This would also be a good time to research all of your options, so that when you do get there you know what you're getting into and can make informed decisions. It might be good to find out if you have a sibling match, although some doctors seem to put this off until absolutely necessary, probably because testing is very expensive. If you think you may be going that route, it couldn't hurt to make some financial preparations too if you can. Just a thought.

[Hopeful]

Hi David,

Cyclosporine alone is another treatment option for MAA. Typically, it takes 3-4 months for the Cyclosporine to build up in your system and then see a response. It would be nice to make use of the time you have now and try a less dramatic approach then ATG/BMT/Cytoxan/etc. Also, there is some argument that treating MAA earlier could minimize stem cell damage.

Here's a good article called "AA: Management of Adult Patients"
http://asheducationbook.hematologyli...ull/2005/1/110

[John]

David,
When my son was diagnosed with MAA in 2005 I started researching what may have caused his MAA. We stopped all meds (claritin & ? for teeth because we are on a well), moved him out of his bedroom and out of the house for awhile, and went on bottled water. His CBC counts continued to deteriorate and we were probably a month away from a bone marrow transplant looking at the trends. Fortuneately, my younger son was a match if needed. I packed up the family and we left Washington State for Colorado on vacation because of my concerns over air toxins from a chemical plant that produces over 500,000 gallons of Benzene annually and emits tons through evaporation into the air. His CBC counts in Colorado showed improvement for the 1st time in over 4 months. I sent him back to Colorado for Thanksgiving, Xmas, Spring Break, and all the next summer. With each trip he showed improvement upon his return in CBC counts. I had read that at high altitude it stimulates your bone marrow to produce additional red blood cells but all 3 cell counts went up. A cluster study was conducted because 9 kids were sick with AA in our rural area but they would only say that they were sure it wasn't the chemical plant. He continues to leave WA every summer and we are hoping that with his 5th anniversary CBC all his counts will be within the range. Whites and Reds are all okay and just need Platelets and platelet size to improve a little more. I don't know if this would work for you but it is something to consider. I have charted his CBCs and trended them so if you would like his results I would send the Xcel spreadsheet to you. I can be reached at my home e-mail McCarthy_4@comcast.net
The doctor's want you to sit and wait and then they can treat. To me they need to be recommending actions to improve your condition.
John McCarthy

[bchenaille]

I agree with John. We may never get a definitive answer on what is causing AA, however you need to take action immediately to see if you can begin to control this yourself. Just a word of caution would be to work with your practitioner to avoid doing something that would cause a faster decline in your counts.

Kathryn had hi-dose Cytoxan @ Hopkins and we did not have the luxury of slow deteriorating counts. First visit to the ER showed 4,000 platelets. While she was being treated, I began searching and found an acupuncturist/herbalist doctor in DC who is on my radar in the event her counts begin to deteriorate.

Here's his info:
Wu Shi Hua Omd MD - (202) 789-5466
807 6th St NW
Washington, DC 20001

Hope this helps.

[fibogann]

Hi David,

If you are interested, you may like to try some alternative herbal therapy such as chinese herbs. This is because in asia where AA is more common than the west eg China, herbs are the first frontline of treatment for aplastic anemia with the BMT second.

But before you try any herbal therapy, I strongly suggest you to read the


Research Report by Dr Greame Shaw and Dr Ba Hoang on the use of the Botanical Herbal Formula (BH-5) for aplastic anemia.


I've had good results from herbs and shark liver oil for the treatment of my son apart from having the ATG.

Reading the above research report will give you more information to help you to form some opinion as to whether you will like to try the herbal route while on the waiting mode.

Just a suggestion for you to think about.

regards

[Marlene]

Hi John,

I just finished the book, Slow Death by Rubber Duck and I think you would be interested in reading it. It's basically about the hidden pollution we are exposed to and how it is effecting our health. The impact is greatest on our children. If you live near a chemical plant and are on well water, then I think you have a good reason to suspect something of a toxic nature may be effecting your son.

Recent research is now showing that very small amounts of BPA found in plastics are disruptive to the endocrine system. This is significant in that most studies on safety look at large doses. (this is true for benzene...they need to see a high dose exposure and then the AA to establish the causal relationship) There's also an chapter on what went down in W. VA with the Dupont facility. In the end, Dupont had to construct a new water filtration plant to filter out chemicals they leach into the water there. They too had more of their share of diseases as well as birth defects. These chemicals can change DNA and don't kill right away. The effects may not show up for years in adults. But infants and children are at much greater risk.

I agree you need to take action to try and reverse this now. The unfortunate thing is that most doctors don't have any insights on how to do that. So you are really on your own. I wish we would of had more time to do just that.

Keep searching.
Marlene

[Deanna16]

David I feel the same as you do and have felt that way since my dx in Oct 09. You have gotten so may wonderful replies from the board. The disheartening thing for me to see all of them though is my doctor insist there is nothing for me to do and won't even really discuss the idea of progression. She has been making her decisions with the guidance of Dr. Young and has a strict criteria for treatment, which is fine. But reading all these replies makes me again feel liek I'm not doing enough...and I am pretty annoying and persistent when I go to her office LOL. I ask lots of questions and question the reasoning behind the answers so I can understand. Maybe it's cause i'm such a type A personality! In the meantime though, planning financially gave me a small sense of control and helped me feel a bit better...again, until i read this post LOL

[Robi1Knobi]

I feel so strongly that if you are "watch and wait", you should try to help yourself as much as possible. No one will ever care as much about yourself....as yourself. You have to be your own advocate, and don't be afraid to ask questions. Most docs don't know the answers, so you have to search for them, because so much is unknown about our disease...I found out something was "wrong" with me in 2001, and since then have seen many specialists, had alot of blood drawn, and multiple bmb's. I finally got diagnosed in 2007 and that doc was ready to do a transplant, until I did research (on my own) and got a 2nd opinion from Dr. Young at NIH. He told me I didn't need a transplant, because he said I had mild AA, not moderate-severe like the other doctor. I made alot of changes to help myself, I'm sure some of my friends thought I was crazy. I changed to all biodegradeable house cleaning products, quit using plastic to heat food in, started doing nutritional research, MOVED from Houston to Austin, surrounded myself with positive people, & tried to learn how to be more Type b. You have to find ways to reduce stress in your life...so you don't get sicker.