It sounds like a relapse so what should we do next

[JodyW]

Trevor ended up in the hospital last week with failing kidneys, dehydration, very high potassium and blood counts dropping. His hgb was under 7 and he recieved a transfusion. It was disappointing because he had been transfusion free for a think a few months.(I should know the exact date but I dont).. So the Dr said his Hgb was probably low because he had just had a lot of fluid so he wanted to see what his next cbc showed. I just talked to Trevor and someone told him his plateletts were 36. They didnt give him his other numbers, but my guess is it wont be good when they do. I am trying not to fall off the deap end, but does this mean the treatment isnt working. If it isnt working, if it is a relapse what are the time frames like. Since he doesnot have an AA specialist you guys are the next best thing. Should they be doing a search (he is biracial and 23) so Im told it may be very difficult to find one. If they do agree to do the search would they know in a day if they have a match or is that something that takes days, weeks etc. If they dont find a match how long do they wait to do another round of treatment. And since it looks like this failed in 4 months what is the prognosis for a second round.

[mscrzy1]

Hi Jody,
I understand the total confusion and disappointment that AA can dish out, but I'm not by any means an expert on AA and am finding new information all the time. Just last night I took the time to sit through a webinar on the AA/MDS website called Aplastic Anemia: Current Thinking on the Disease, Diagnosis and Non-Transplant Treatment. It was incredibly informative and had a lot of information for those of us who have gone through the ATG treatment. I highly suggest checking it out and listening to it all the way through. There is a great Q&A session where Dr. Scheinburg really lays out some great information. Here is the link:

https://live.blueskybroadcast.com/bs...27&MA_ID=16322

Just click on "View Presentation". Make sure you have a good hour or so to view the whole thing. They also have other webinars that you can view by checking out the online learning center. There is a lot of information there that is incredibly helpful. :-)

[Lisa V]

I'm really sorry about Trevor, Jody. Had he been drinking enough water? Cyclosporine is notoriously hard on the kidneys, but the effects can often be mitigated somewhat by drinking lots of water. The fact that he was dehydrated makes me think that maybe his doctor didn't tell him that (or that he didn't comply-- it is a pain in the butt to have to lug a water bottle around with you everywhere and run to the bathroom all the time), or that they weren't testing his creatinine often enough to do something about it before it got too serious. Reducing the cyclo dosage would be the logical next step if hydrating alone wasn't helping. Of course that increases the risk of relapse, so it's a real balancing act.

Are his kidneys actually failing, or just reduced functioning? The second one can presumably be reversed by taking the steps I mentioned, but once they actually fail, that's a whole other ballgame, and that really complicates things! The first thing I'd do is try to find out how serious it is.

If he is relapsing (and if he's had to be transfused that would be my first thought too), and he can't tolerate the cyclo, then there are other immune-suppressant medications they can try. Whether or not that would do the trick without another round of ATG remains to be seen, but the fact that he did show some response, even for a short time, is a more positive indicator for the success of a second round than if he didn't show any improvement at all.

A donor search would probably be a good thing, if only to tell you if that's going to be an option or not. It can take some time. I'm not sure exactly how much time, I think it varies, but there are several stages to go through, so I'd guess weeks or months. It's definitely not an overnight thing, and unfortunately it is much more difficult to find a match for people of mixed race or less common (in the US) ethnicity. Here are a couple of links you might want to look at:

http://www.marrow.org/PATIENT/Donor_...ess/index.html

http://www.time.com/time/health/arti...993074,00.html

I wish I had something more positive to report, but before you go off the deep end, find out what's going on with his kidneys! If they're just stressed and not actually shutting down, you can at least scratch that off your list of worries and procede to the next one.

[JodyW]

Thank you for such quick replies. I just watched the video on AA current thinking and it couldnot have been more on point for what I needed. What a great speaker and great information. Would love to have him as Trevor's Dr. My fears on relapse are much less then they were 24 hours ago. The information gained from that one video was tremendous. Going from falling off the edge to feeling almost optomistic in 24 hours is quite an experience. Another lesson learned. I definatly have to spend more time on that website then I have. Thank you again for your quick response, it made all the difference.

[Marlene]

Hi Jody,

If Trevor does need to go the BMT route, then you should check into the protocol that Johns Hopkins is using for partial match transplants. They are having some really good success with it and other centers are starting to use it also. They basically give two days of high dose cytoxan about two days after the transplant which helps control GVHD very successfully. The clinical trial John participated in for his SAA (High Dose Cytoxan) was very instrumental in them developing this protocol for BMTs.

With this procedure, they find patients graft just fine and GVHD is either eliminated or greatly reduce. As you know, GVHD is a big problems with less than perfect matches.

Here's an article on how they are treating bone cancer patients. They also use this with Aplastic Anemia BMTs.

http://www.sciencedaily.com/releases...0707101956.htm

[Robi1Knobi]

I don't know if this will help Trevor, but maybe you can stop microwaving his food if you use a microwave. When I quit a year ago, I didn't need a blood transfusion for a year. Apparently, microwaving your food kills the nutrients, so anyone with our disease (or anyone else!) shouldn't do it. Research it, or just try it and see if you see his counts rise. I wish you the best of luck, hang in there!!

[Karenish]

good grief Linda, thanks for posting this....I am always microwaving because I am on my own during the week, get in from work and just blast to reheat a meal or cook from a sooper dooper expensive supermarket. the ingredients are fresh but I suppose using the micro does not help. Will use the oven from now on xxx

[Ruth Cuadra]

Originally Posted by Robi1Knobi

Apparently, microwaving your food kills the nutrients...

Every cooking method can destroy the nutrients in food. The factors that are involved include how long the food is cooked, how much liquid is used, and the cooking temperature. Microwaves often use less heat and involve shorter cooking times so they are generally less destructive to food cooked in them.

A microwave oven is simply a high-tech way of heating food, and it is heat, whether from burning fuel, an electric heating element or absorbed microwave energy, that changes the properties of food and nutritional value of food.

In the fight against bone marrow failure diseases it is important for patients and their caregivers to eat as well and as regularly as possible. If lack of time or the inconvenience of conventional cooking might keep you from doing so, don't dismiss microwaving cooking without checking with your doctor.

Here are couple of links that you can use to explore this topic further:

http://www.livestrong.com/article/37...roy-nutrients/

http://thechart.blogs.cnn.com/2010/0...-of-nutrients/

Regards,
Ruth

[Karenish]

Thankyou most interesting and has allayed some fears! I thought i may have been making things worse xx

[Marlene]

I'm not a fan of the microwave either. I have one that sits out in the mud room. Typically used for re-heating carry-out chinese food which from the start, is not the healthiest choice . I find that I can re-heat or cook from scratch just as fast the old fashion way.

A couple of things that have lead me to reduce its use and move it out of the kitchen: 1) Exposure to potential radiation...You have no way of knowing how much, if any, radiation is leaking from it. 2) When you are neutropenic, you should not use one especially to re-heat foods. This is because it does not heat the food evenly. There are hot spots and cold spots and will not kill all the bacteria. 3) Microwaves will cause the plastic containers to leach toxic chemicals into the food. 4) Blood is never heated in a microwave because it destroys the red cells. Instead its heated in a warm water bath. 5) It is recommended not to heat breast milk in microwave. It destroys the immune protective properties of the milk. 6) And finally, even though all cooking destroys some nutrients, microwaves effect the food on a molecular level. The body looks at the distorted/destroyed molecules as foreign to the body.

I will use one occasionally but I prefer my cooktop and oven.

[Susan]

Well, I always get irradiated rbcs since I have two perfectly matched siblings and this helps in case I even need a SCT. I feel great afterword. No problems or cancers after 12 years:-). True I was leery at first but it reduces the chance of developing antibodies, not good at transplant.

Suz