Can Drugs/Transfusions interfer with BMT success?

[Lisa V]

marmab, if your marrow is hypocellular with no cytogenic abnormalities or blasts, do you know why you were diagnosed MDS instead of AA? My husband's diagnosis was officially changed to hypo MDS only after they found a trisomy 8 clone. Other than that one mutation, we're still treating it as AA, and all of us (including his doctor) still think of it and refer to it as that.... just with a "twist". He has responded well to ATG/cyclo, so that may be a viable option for you too.

I'm also curious as to why your doctor would recommend either transfusions or growth factors as a "treatment". Neither of those things will actually treat your disease, they'll just buy you some time until you can respond to treatment. For some patients whose MDS doesn't fit the criteria for any of the treatments that are currently available, supportive care may be their only option, but it sounds like you do have other options.

Our doctor used a target of Hgb at 8.0 or Plts at 10k before ordering a transfusion, but those numbers can and should be adjusted according to individual tolerance. If your shortness of breath at 9.1 is severe enough to interfere with your life, what advantage could be gained by waiting on IST while you start transfusing? In general, the less transfusions you need to have, the better off you are likely to be in terms of iron overload and building up unwanted antibodies. I'm not suggesting anybody avoid them if they need them, but if that's where you are, then it seems to me that it's time to start whatever treatment is deemed most appropriate for your condition.

Ken got both Procrit and Neupogen shots for a while too. In retrospect, I don't think the Neupogen was really necessary for him, as he was never severely neutropenic, and didn't derive much benefit from it either. It was started as a matter of course during his first ATG, but by the time he had his second one they didn't bother with it.

The Procrit, on the other hand, did help him keep his Hgb up while his counts were recovering. He was also being transfused when he first started it, so he wasn't relying completely on that when his counts were really low. His doctor never did test his EPO levels (a bone of some contention, since the stuff is very expensive). He actually said "This doesn't usually work for AA, but let's try it anyway"! Later on we tried stopping it to see if it was really doing anything or if he was just responding to the ATG. It did make quite a difference, so we kept him on it and gradually weaned him off it once his Hgb got up around the 12 level. If you decide to give it a try, I'd make sure that they test your EPO first, and also that your insurance will cover it. Even the pharmacist's jaw dropped to the ground when filling the prescription for a single vial. She said "This is more than my car payments!"

[Janice M.]

Hi Perry,
I was unfortunate to only have one sibling, given my current situation! He was tested, along with my two adult daughters within the first month of being diagnosed. None were a match. I currently am at a wait and watch point, but the search has begun for a MUD incase it is necessary. I would think having your siblings tested now would greatly reduce the wait time if a BMT ever became necessary. You are certainly young enough for a transplant, so if was determined that your siblings were not a match you could be put on the registry which takes up to 6 months to search and screen for a donor, so I have been told.

There is promising news with the research being made public yesterday of a person's own T-cells, being used to target cancer cells in a Leukemia patient. Perhaps this treatment may become an option for us with AA or MDS. In the meantime, I would think having various options ready would be the best and most comforting choice.

All the best,
Janice

[Hopeful]

Hi Marmab,

It's funny how your viewpoints change. I was also very drug adverse before my disease. It kind of goes with the healthy and active lifestyle. However now I have an even greater fear for tapering off Cyclosporine! Go figure.

The watching-and-waiting is tough! Your counts aren't crazy-low so there is a chance that your marrow will heal on its own. However, if the immune attack gets out of control, you will need drug intervention. Why do your doctors suspect MDS vs something else?

An HGB of 9 is tough when you are use to being active, but usually your body can adjust to it within a week or two. You must remind yourself that your body is battling a serious disease, and it will take time before you are at your previous level of activities. I would just caution you about jumping on the transfusion bandwagon. Transfusions carry serious risks and side effects and should be avoided until you *really* need them. EPO is usually suggested first for bone marow failure patients, assuming your own EPO levels are low, as Greg pointed out. However EPO shots are typically not given if your HGB is 10 or more. So, you may even want to wait on this too.

As an aside, another marker for response to IST therapy for hypocellular MDS patients is a reversed CD4/CD8 ratio. Usually you find this mentioned in your BMB reports.

[Hopeful]

Originally Posted by Lisa V

Ken got both Procrit and Neupogen shots for a while too. In retrospect, I don't think the Neupogen was really necessary for him, as he was never severely neutropenic, and didn't derive much benefit from it either. It was started as a matter of course during his first ATG, but by the time he had his second one they didn't bother with it.

Hi Lisa,

At the AAMDS Conference one of the doctors mentioned that they have found that administering EPO with G-CSF together can be more effective in raising hemoglobin than EPO alone (in some patients). The thought was that it may have a synergistic effect by stimulating the bone marrow.

[Lisa V]

Originally Posted by Hopeful

Hi Lisa,

At the AAMDS Conference one of the doctors mentioned that they have found that administering EPO with G-CSF together can be more effective in raising hemoglobin than EPO alone (in some patients). The thought was that it may have a synergistic effect by stimulating the bone marrow.

I had read that in the AA&MDSIF literature too, Hopeful, so I was kind of glad he was getting them both together at first. I don't know if it actually worked that way for him, though. He got a noticeable WBC bump during ATG when they were giving him daily Neupogen, but then went down to weekly injections for the next 6 months. His WBC when he discontinued it was the same it had been at diagnosis (2.4), and quitting didn't affect his other counts either.

I just hope the Neupogen didn't contribute to his developing the trisomy 8. I've asked his doctor about this, and he admitted he'd heard of that possibility, but there has been no conclusive evidence yet.

He was on Procrit for 4 years, starting a few weeks after the first ATG and continuing on through the second one and thereafter. It was not enough on its own to keep him from relapsing or having to be transfused and treated again, so I don't see it as an either/or scenario so much as an "every little bit helps" one.

[marmab]

Thanks so much Greg and Berry. Very good advice! Thanks for the links, Greg -- I have checked them out and they are extremely helpful. I have been reading all I can about this disease (or diseases -- really a complex of syndromes with so much individual variation), but there are times when I am overwhelmed by all the info. At the end of the day though, I am ultimately better informed, and better equipped to go forward. I am seeing a doctor at Beth Israel Deaconess Medical Center in Boston, whom I like very much, and seems very well informed. Dana Farber is, obviously, the big gun in the area, but with Harvard (and its affiliated hospitals -- Dana Farber and Beth Israel are two of them) and all the other universities and hospitals here, medical care is pretty top notch. I'm wondering about getting a second opinion though, just because it seems the prudent thing to do with a serious Dx.

At any rate, I am proceeding conservatively. I must say that Greg's informed and eloquent posts resonate with me, because I am in somewhat the same frame of mind as he. And, luckily, my disease is at a stage (watch-and-wait, at the moment) that gives me a bit of time to digest all the great information here. I am debating getting an RBC transfusion though, so that I can do some of the more intense physical activity to which I'm accustomed. My doc says that it's worth a try to use transfusion on an "as needed" basis, to give myself a little boost for specific aerobic activities. He also is recommending growth factors (Epogen) though, which I'm on the fence about (I'm drug averse -- something I have to get over, I know). My natural EPO is in the high 300's, so I have some wiggle room to see if Epogen works or not. Not sure whether to try it or not. IST will undoubtedly be on the horizon for me if my counts keep declining. In that vein (no pun intended), thanks, Greg, for the Campath info. I will ask my doc about it at my next appt. in a month.

marmab

[marmab]

Thank you all so much. I missed reading these posts before I posted again. Very good points, especially on my Dx. I will ask my doc at my next appt. why he is considering this MDS and not AA -- I've been meaning to do that. I will also ask about the EPO & G-CSF together. Regarding growth factors or transfusions as "treatments", that terminology is my mistake. My doc did point out that these are not really "treatments", but merely supportive measures.

Where I always get tripped up, reading these posts, though, is the do-I-or-don't-I question. By nature, as I mentioned, I am extremely drug averse, and I feel like going there is a slippery slope, to be avoided as long as possible. But then I read about the many who have gone there, some quite successfully. If I wasn't used to being so active, I wouldn't even debate this, but I selfishly still want to function at a higher aerobic level than I now can. My doc hears that, and is suggesting that, if I want to, occasional transfusions, or trying growth factors may be a stop-gap way to get a RBC boost, and see how it goes. (I am concerned, too, about the monetary cost, which I need to look into.) He says that if my counts allow, I don't have to keep doing either of these -- it's not a commitment. But a little voice in my head keeps saying, don't even go there. Thanks again for your posts!

marmab

[marmab]

Sorry to not get all my thoughts together at one time. I just came back from a brisk two-mile walk with my dog, on a beautiful, cool and clear morning, and this is what is going through my head. On level ground or downhill, I'm great -- could go forever-- even thinking that maybe things are getting better with my counts. Should I jog a little? And then I come to a rise or hill... no oxygen, chest pain, pounding heart, dead legs...

Any of you other athletes out there may have observed this too. I am still swimming a lot, which doesn't get me winded. It's interesting how the upper body muscles that are pulling my body through the water don't require nearly the oxygen load that the major leg muscles do when lifting body weight (and I'm not heavy) up a hill or stairs. I've read somewhere that athletes can be categorized two ways -- those that love using the major, lower body muscles, and those that prefer the upper body muscles. Turns out that in addition to perhaps a genetic predisposition between preferring/excelling at heavily aerobic exercise (lower body) vs. upper body (more finesse, hand-eye coordination), there is a whole host of physical and psychological differences between the two groups. Of course there is a lot of overlap, too (think rowing, cross-country skiing, tennis, etc.) Just interesting to think about, to me anyway.

So...my question. As a few people have mentioned, in light of my seemingly wacky immune system, is there any chance that my marrow might rebound on
its own? Especially because there is no evidence of blasts or cytogenic abnormalities. My doctor thinks not, or at least he said that in his experience he hasn't seen it. Has anyone out there tried acupuncture to try and re-set or tune the immune system?

Sorry to be so wordy -- just thinking out loud here. Thanks so much to everyone again. This is a great forum!

marmab

[Greg H]

Marmab,

Lisa V made an important point about transfusions being a serious thing that carry serious risks. The level of safeguards involved in the modern blood collection, distribution, and administration process are all designed to make it nearly foolproof. So the chance of getting the wrong type of blood is infinitesimal, and the chance of picking up something like HIV is 500,000 or a million to one. It's not something I worry about.

But I did, relatively early on, pick up a couple of blood antibodies. That makes it more of a challenge for my blood bank to find blood for me. I fact, Almost all the blood I receive comes form a big regional blood center in St. Paul, MN. I need to learn more about the implication of these antibodies for transplant, but I haven't done that reading yet.

That makes elective transfusion a bit of a question-mark. I don't have a choice, given my HgB levels, and was, in fact, transfused before I was diagnosed.

As far as cost is concerned, I use a small town hospital in rural NC. The transfusion is administered in the day surgery wing; I typically have two units of packed red blood cells. Occasionally, if I have to have blood on a weekend or holiday, they have to give me a room upstairs in the inpatient area for the day. The cost ranges from $1500 to $2000 per transfusion, not including whatever my hematologist changes for the CBC or for writing the order. Insurance covers 80% of that until I meet my out of pocket maximum.

You may need to see whether your insurance company has a policy that says your Hgb needs to be at a certain level before they will pay for the procedure. I may have mentioned this already, but the rule of thumb around these parts seems to be that you transfuse at about 8.0. NIH told me they transfuse folks over 60 at 9.0.

And Lisa's point about MDS or AA is definitely worth checking out.

There's a well-read AA site here by a guy that has used a bunch of natural therapies (including coffee enemas! ) to get his AA under control. Might be worth checking out. And I'm sure other folks will have thoughts along those lines.

Something else to think about while you're in watch and wait and at a very low risk status are CoQ10 and Curcumin (the active ingredient in turmeric). Dr. Azra Raza (as well as some folks at MD Anderson) have been working with these in MDS. An initial study by Raza showed some promise for CoQ10, but then she moved from MA to NY, and I don't think those trials have started back up. I can send you some info on that if you'd like.

If your doc needs some data on the Campath experiments at NIH, I have copies of the two papers on results thus far -- or I can email them to you if you have a hankering to wade through tedious research stuff.

Take care!

Greg

[Lisa V]

Originally Posted by marmab

So...my question. As a few people have mentioned, in light of my seemingly wacky immune system, is there any chance that my marrow might rebound on
its own? Especially because there is no evidence of blasts or cytogenic abnormalities. My doctor thinks not, or at least he said that in his experience he hasn't seen it. Has anyone out there tried acupuncture to try and re-set or tune the immune system?

The stats I've seen for AA suggest there is about a 20% chance of spontaneous remission without treatment. I don't know what it would be for MDS. I think these numbers were gathered before the widespread use of BMT or the advent of ATG/cyclo as a therapy. I suspect it would be somewhat more difficult to quantify these days, as most patients do go on to either IST or transplant. Back then, the other 80% were simply mortalities.

Greg has posted a link to Aplastic Central. Sadly, their forum is pretty dormant now, but there's still some good information in the archives. It must be noted that while Bruce started the site to explore and encourage more holistic alternatives to ATG or BMT, and he remains committed to that course, he has also admitted that it hasn't produced the type of results he was hoping for. He still has AA, and his counts remain low, but he's learned to live with that. At least he's still here, so there's hope!

The idea that any type of health issue can be reversed if you just eat healthy, excercise, avoid environmental toxins, etc. is very appealing to a lot of people. In the beginning many choose this approach over conventional western medicine and being bombarded with chemicals, and it's easy to understand why. I just wish I'd heard more success stories from these people. I have heard one or two, but given the odds I quoted above, who can be sure what really brought about their remission? Most eventually become discouraged and face the need to do something more drastic about it.

Likewise, I am still waiting to hear some success stories from Campath. The few people I've heard from who tried it have said it's much easier to tolerate than ATG/cyclo, but they also didn't acheive a response to it.

[Greg H]

Hey Lisa!

I didn't realize Bruce's site was kind of moribund; I'm not really up on the aplastic world but had run across his stuff early on.

NIH is trialing Campath for both AA and MDS. I've seen the MDS papers, which show some interesting response (which is why I signed on), but I don't know whether the AA trial has resulted in a paper yet. Do you know?

Take care!

Greg

[marmab]

Thanks so much Greg. You are a wealth of good knowledge. Reading your posts and the others definitely has me reconsidering the transfusion idea, as well as growth factors. It is great to have such a reservoir of patient-based experience and knowledge, which is a good complement to information from the medical field. I know that it must get tedious at times for you to constantly be posting, but I, for one, am very grateful for your input, as well as the others who have been kind enough to post here. I will keep a watch on my counts, obviously (we're checking weekly), and in the meantime look into my insurance benefits more specifically. I live in Massachusetts and subscribe to one of the plans backed by the state (as you probably know, we have mandated coverage in Massachusetts). There are some huge gaps in the system, but I must say that so far, for my family, the coverage has been quite comprehensive and good -- many choices of providers, low premiums and deductibles, modest co-pays, exclusions, etc.. For instance, I was alarmed by the cost of Epogen as mentioned by several posters here - hundreds of dollars/dose. My insurance would cover all but $25.00 for the dose/week that I would presumably start on, if needed. Anyway, enough insurance talk...I do feel lucky to have it! I know it's a HUGE burden for many.

Thanks again for your insights. You are terrific! And I'm obviously rooting for you in your ongoing relationship with this disease.

marmab

[marmab]

Thank you Lisa, too! You and Greg are like my encyclopedia right now!

marmab

[marmab]

Originally Posted by Hopeful

Hi Marmab,

It's funny how your viewpoints change. I was also very drug adverse before my disease. It kind of goes with the healthy and active lifestyle. However now I have an even greater fear for tapering off Cyclosporine! Go figure.

The watching-and-waiting is tough! Your counts aren't crazy-low so there is a chance that your marrow will heal on its own. However, if the immune attack gets out of control, you will need drug intervention. Why do your doctors suspect MDS vs something else?

An HGB of 9 is tough when you are use to being active, but usually your body can adjust to it within a week or two. You must remind yourself that your body is battling a serious disease, and it will take time before you are at your previous level of activities. I would just caution you about jumping on the transfusion bandwagon. Transfusions carry serious risks and side effects and should be avoided until you *really* need them. EPO is usually suggested first for bone marow failure patients, assuming your own EPO levels are low, as Greg pointed out. However EPO shots are typically not given if your HGB is 10 or more. So, you may even want to wait on this too.

As an aside, another marker for response to IST therapy for hypocellular MDS patients is a reversed CD4/CD8 ratio. Usually you find this mentioned in your BMB reports.

Hi Hopeful,

Thank you for your very useful info. I looked on my BMB pathology report for the CD4/CD8 ratio. I see that they looked at CD3, but not CD4 or CD8. What are these exactly (I'm a newbie to all this)? Should they have looked at them? Oh, one more thing. My natural EPO level is 396. My doc said that there was "room" (a count under 500) to try Epogen. Is it worth giving it a try? Seems like my kidneys are doing their thing, trying to stimulate the cells. Does natural EPO get as high as 500? Assuming my EPO stays around 400, maybe I should see if my Hgb holds at 9, or even increases.

marmab

marmab

[Greg H]

Marmab,

Warning! Greg is about to try to be helpful by talking about something they hadn't even invented when he was in college and that therefore he has learned about but never been tested on (not to mention he was a religion major and thus hasn't seen a cell under a microscope since 9th grade)! Please jump in a correct me if I type something stupid.

The CD-system is a way of classifying different kinds of blood cells. As I understand it, it's based on protein (or glycoproteins) found on the surface of the cells.

The CD4 and CD8 cells are both T cells, a kind of lymphocyte, which is a kind of white blood cell. The CD8 cells are real killers; they actually go after bad cells (like some viral infection you pick up from your favorite niece), attack them, and kill them. The CD4s are more helpers or pointers. They hold up a sign that says, "Danger, Will Robinson! Incoming nasty cells. Please come kill them!" And that gets the CD8s all excited to go kill things. [BTW, I am not trying to over-simplify this; this is the over-simplified way I understand it myself.]

The CD4s and CD8s are kind of like Special Forces units in the US military, which are often specialized on a specific country, learning the language spoken there, the customs, etc. So, if you pick up some virus for the first time, let's call it the "nastystuffinmyspinachmakesmehurl" virus, or NSMSMH, some CD4s and CD8s will start to specialize in that virus, and, even after they have killed it, you'll have a nice little bunch of experts on NSMSMH hanging out in your immune system just waiting for it to crop up again and very good at killing it.

So . . . . in the world of immune-related MDS, what we think is happening is that some of these CD4 and CD8 T cells have become specialized in attacking your very own bone marrow stem cells (which, by the way, have their very own CD numbers).

The late Dr. Elaine Sloand, at NIH, wanting to prove this, picked one specific type of abnormal stem cell -- those with Trisomy 8 -- and demonstrated that, in fact, folks with Trisomy 8 have a special little CD4/CD8 unit that attacks Trisomy 8 stem cells. When this attack happens, it releases a lot of seriously nasty chemicals called "cytokines" in the marrow, and, Sloand believed, those cytokines both suppress blood production and cause additional chromosomal damage over time. And, though they picked the Trisomy 8 to study, the folks at NIH believe that other chromosomal abnormalities also inspire their own little squads of killer CD4/CD8s.

The idea behind immunosuppression for MDS is to kill off these squads, stop the attacks on your stem cells, and hope that the ceasefire will allow the marrow to heal. Unfortunately, the drugs that do that, ATG, Cyclosporine, and Campath, aren't specific for the CD4/CD8 squads, but knock out a whole bunch of other white blood cells, too, making you susceptible to various infections. So, you have to take prophylactic antibiotics for a while when you've done immunosuppressive therapy.

Now, after that big long explanation, I have to admit that I do not know the answer to your question about the significance of the CD4/CD8 inversion in AA, so we'll have to hope Lisa jumps in and explains that to us both.

Hope that helps . . .

Greg

[Greg H]

Originally Posted by marmab

My natural EPO level is 396. My doc said that there was "room" (a count under 500) to try Epogen. Is it worth giving it a try? Seems like my kidneys are doing their thing, trying to stimulate the cells. Does natural EPO get as high as 500? Assuming my EPO stays around 400, maybe I should see if my Hgb holds at 9, or even increases.

Marmab,

Two answers for the price of one! That other answer was so long, I thought I'd better contribute what little I know about EPO in a separate answer.

My EPO level has been tested twice, about three months apart, at two separate labs. One test showed a level of 1551, the other 1096.

My favorite doc, Matthew Olnes, who just left NIH for Alaska, told me when I was asking about ESAs (synthetic EPO), that they work best in folks with EO under 100, but sometimes work for folks in the 100-500 range. But I don't have the actual data that led him to say that. I'll go look for it.

My kidneys seem to be screaming for more blood, whereas yours are just mildly annoyed, but my HgB was 6.2 when I was first diagnosed, so they had more to scream about. I'll let you know if I find that research.

BTW, I know your HgB is around 9.0 now. You may have already answered this question; if so, pardon my asking again. Do we know how long your Hgb has been sliding? For example, based on old blood tests from annual well patient visits, etc. I know that my Hgb was 13.9 in 2005 and 9.2 in 2009. Then it hit 6.2 in 2010. And I was not falling over, but I was moving kind of slow.

My thought is that I had a long slide, which made me a little more tolerant of low Hgb. I am not quite the heavy-duty aerobic person that you are, but, with my HgB in the 8s or 9s, I can work in the yard or garden all day, run a chainsaw all day, ride my bike for ten miles, etc. It may be that, if you're recently in the 9s, as others have said, your body will adjust. But everyone is different, so it's hard to predict.

Take care!

Greg

[Hopeful]

Hi Marmab,

I like Greg's explanation of the CD4/CD8 ratio. A serious immune attack (like a bad virus or aplastic anemia) can reverse the CD4/CD8 ratio so that you have a lot more killers (CD8) then helpers (CD4). Here is an article that discusses this relative to MDS. It is titled "Dysregulated T Cell Hemeostasis in Bone Marrow Failure":

http://www.aamds.org/sites/default/f...entSummary.pdf

If your CD4 and CD8 cells aren't mentioned in your BMB, I would suspect that they aren't unusual or reversed, but you should discuss this with your doctor (or better yet, a second opinion!)

[Greg H]

And I notice that the next page in the PDF that Hopeful links to has a brief summary of Dr. Sloand's presentation on immunosuppression, including the initial Campath results.

Greg

[Lisa V]

Nice disclaimer, Greg. Perhaps I should post one of my own.

WARNING: I am not a doctor, nor do I play one on TV. I am just a concerned spouse who has gained a fair amount of hearsay info from web forums such as this one. My focus tends to be very selective; if it doesn't have a direct bearing on my husband's condition, it is more likely to be glossed over or filed in short-term memory. Please do not attach the weight of authority to my comments without checking them out with your doctor. Also, use caution while operating machinery, do not drink and drive, stay in school, look both ways before crossing the street, and don't believe everything you read on teh interwebz. Thank you.

Okay...... your question about the Campath trials for AA made me go back and retrack my sources, Greg, and now I need to recant a bit. Some of the people I thought had tried it turned out to have tried different monoclonal antibodies (Rituxan or Zenapax). After eliminating those guys, I can only find two AC forum members who were involved in that clinical trial at the NIH. Not much of a sampling, and one did have a satisfactory response. Here is her post:

http://www.aplasticcentral.com/forum...fid=2&tid=1377

The other did not respond, and later went on to transplant. Sadly, he is no longer with us. You can read his thread and their conversation here:

http://www.aplasticcentral.com/forum...fid=2&tid=2332

As far as the results of the trials overall, I have no idea, but I would like to know!

Also, thanks to Hopeful and Greg for the info/explanation about CD4/CD8. This is a new one on me too. Does anyone know what Ki67 is?

[Greg H]

Hey Lisa!

Love the disclaimer! We might want to add: "No large or small animals were harmed in the making of this opinion, though the same cannot be said of brain cells."

I'll try to see if I can find anything on the Campath for AA trial; if I have luck, I'll post the link.

Near as I can tell from reading the Wikipedia entry Ki67 is a protein marker that's abundant when cells are reproducing rapidly and more scarce when they are reproducing slowly. So the presence of Ki67 along with the high CD4/CD8 ratio means, like you explained earlier, that the killer cells aren't just more common than the helper cells, but the killers are reproducing rapidly.

That could be totally off, but I think it's right.

Take care!

Greg

[Hopeful]

The results of the trials for Campath as a first line of treatment for SAA were not encouraging. In fact, the Campath line was stopped because of the large percentage of deaths and non-responders.

http://ash.confex.com/ash/2010/webpr...aper32347.html

It is still considered an option for treatment for relapse or non-responders to H-ATG though.

[Hopeful]

Hi marmab,

If I were you, I wouldn't fool around with the EPO shots at this point for two reasons:
1. While effective for some bone marrow failure patients (usually with EPO's under 100), it can cause death in people with tumors. You probably don't have a tumor, but it's a risk.
2. It is my understanding that EPO shots don't work forever, and if you do have MDS or AA, you might want to have this in your bag of tricks for when you really need it.

That said, I am also an avid runner, cyclist, x-c skiier and former mountaineer So I understand your need to keep moving! It was the only thing that kept me sane through my illness. However, anemia is hard on the heart. So you should always wear a heart rate monitor and stay out of your max zone! You will be surprised by how easily you are in it, if your HGB trends down. Also, as you probably already know, biking outside is forbidden becauses you may not survive a crash with low platelets. What worked for me while my counts were down was slow jogging or walking and stationary biking. It is much less taxing on your heart and you can stop and not be miles from home

Take care!

[Laura]

Originally Posted by marmab

Hi Hopeful,

Thank you for your very useful info. I looked on my BMB pathology report for the CD4/CD8 ratio. I see that they looked at CD3, but not CD4 or CD8. What are these exactly (I'm a newbie to all this)? Should they have looked at them? Oh, one more thing. My natural EPO level is 396. My doc said that there was "room" (a count under 500) to try Epogen. Is it worth giving it a try? Seems like my kidneys are doing their thing, trying to stimulate the cells. Does natural EPO get as high as 500? Assuming my EPO stays around 400, maybe I should see if my Hgb holds at 9, or even increases.

marmab

marmab

Trying to remember back to my own trial of epo.....a longggg time ago. If I remember correctly, my epo level was 300 range. I tried epo. It seemed to keep my Hgb low 9 range. I think a few months later was the next time it was checked....it was over 14,000....yes, 14,000....I was told it was not working for it to be that high and not have a normal HGB. So it was stopped. Shortly after, I started needing transfusions again like prior to my epo shots.....not frequently....but needed nontheless. Not sure I would go the same route if I redid it....but just thought I would share the experience. Laura

[marmab]

Thanks for weighing in, Laura, Lisa Hopeful and Greg. I accept (and love) your caveats --"I am not a doctor..." -- but boy, do I depend on you guys for info right now. Absorbing your posts from the past few days, I am definitely trending toward not doing anything at the moment drug-wise or transfusion-wise, as long as my counts are just slowly declining. And I DO feel so fortunate to have found this forum while my counts are allowing me to be at the watch-and-wait stage.

I have always loved sports, etc. but I know that I have to quit being spoiled and learn to live within my new aerobic limits, BUT, that said, I have been worried about my ability to do strenuous field work (I do some wildlife biology and botany conservation work, in addition to my work as a designer); in particular I have an upcoming botany field trip to a remote island that will involve lots of hiking (I live on another island off the coast of MA). But I went out yesterday, in very hot weather (the heat really affects my stamina now!), with a colleague to work on a river otter study, and we did a lot of bushwacking and up-and-down hiking. My breathing was pretty ragged, but I survived, so it definitely gave me confidence that I'm not going to keel over out there.

On the more technical side, I will ask my doc about the CD4 and CD8. Could it be that they didn't look at them because they found no cytogenetic abnormalities that would have raised a red flag to look further afield? Also, Greg, I think, had mentioned that I might want to look back a few years, if possible, to see where my counts were then. Three years ago I had a CBC for another reason (although I now think that ailment may have been related). My Hgb at that time was 11.0 (now it's 9.1), so not a tremendous difference there. My Plts, however, were 515 three years ago, now they're 29; that's a bit of a decline. Interesting...

Thanks again for your collected wisdom and intelligent take on all this. It is VERY much appreciated.

marmab

[marmab]

Originally Posted by Hopeful

Hi marmab,

If I were you, I wouldn't fool around with the EPO shots at this point for two reasons:
1. While effective for some bone marrow failure patients (usually with EPO's under 100), it can cause death in people with tumors. You probably don't have a tumor, but it's a risk.
2. It is my understanding that EPO shots don't work forever, and if you do have MDS or AA, you might want to have this in your bag of tricks for when you really need it.

That said, I am also an avid runner, cyclist, x-c skiier and former mountaineer So I understand your need to keep moving! It was the only thing that kept me sane through my illness. However, anemia is hard on the heart. So you should always wear a heart rate monitor and stay out of your max zone! You will be surprised by how easily you are in it, if your HGB trends down. Also, as you probably already know, biking outside is forbidden becauses you may not survive a crash with low platelets. What worked for me while my counts were down was slow jogging or walking and stationary biking. It is much less taxing on your heart and you can stop and not be miles from home

Take care!

Yikes! I hadn't thought about the danger of an accident while bike riding. I thought that I was safe with a Plt count of 29. (BTW, it's nice to hear from you about your previous level of activity -- it sounds like you enjoyed many of the same things that I did). I thought that the real danger lay in a Plt count of under 20, or even 10. If true, this is something to think about for me, because I live on an island. Although there is a hospital here, they don't do Plt transfusions. The closest place is a mainland hospital which is over an hour (ferry+car ride) away.

Thanks for the suggestion of stationary biking. It ain't the real thing, but any port in a storm.... Luckily we have a new YMCA here, just up the road from me, where I can use the equipment.

One other thing, exactly how is anemia hard on the heart? What, medically speaking, does a lack of oxygen do to the heart?

Thanks. All of you are an inspiration!

marmab