"Unclassified" MDS

[wyle.e.kyote]

I'm 45 years old, male, of American Indian heritage. Prior to the treatments (below) I had a BMI of 17% and was very active. I've been diagnosed with something called "Unclassified MDS" which appears to mean marrow failure without blasts or other MDS symptoms. Prior to this I've never been in a hospital as a patient ..

My journey through this started in November I went to my GP for a headache and was promptly hospitalized White blood cell count at that time was 3200, hemoglobin 5.2, hematocrit 15.4 and platelet count 9,000. Initial haptoglobin was less than 1. Folic acid was 7.8, vitamin 812 was low at 167. Ferritin was 552, total bilirubin 0.8, direct bilirubin 0.2. Reticulocyte count was slightly elevated at 3.6. LDH was normal at 174. TSH was 1.55. Iron 349, iron saturation 62%, serum iron 218.

There was evidence of rouleaux formation with teardrop cells on the peripheral smear. No blasts however, and the teardrop cells did not show during the two marrow biopsies I've had since then.


I've had ~40 units worth of transfusions since Thanksgiving 2011. I seem to last about 10-15 days before needing a recharge. Platelets last about 5 days with me and Hemoglobin will drop over the 10 days .. they will transfuse both when I drop below 8 on the HG usually my platelets are around 10 at the time

Cellularity was 40% in November 2011, 30% in February 2012

My treatments so far have been

25 days of 100mg Prednisone
Gained about 20 pounds; otherwise no effect.


5 weeks of Rituximab
Very bad reaction the first time.. Anaphylaxis followed by a skin condition resembling follicular infection or acne but much worse -- with lots of bruising and bleeding. They held off further treatment for 3 weeks and sent me to another doctor who worked out a premedication schedule which amounted to taking Cetirizine orally for a week before and doing an IV of Diphenhydramine 2 hours before the Rituximab .. Also the infusion of the Rituximab was slowed to a crawl (12 hours for the infusion) This seemed to work but in the end there was no effect


The plan now (which scares me) Is Anti-thymocyte globulin (ATG) treatment starting April 16th .. This one is very worrisome because of what I've read on reactions to it. Especially given the negative reaction I had to the retuximab. They plan to do it in-patient and with 24 hour monitoring for several days.

I've been typed for Marrow transplant and the search is on for a donor should the ATG not work out.


The ATG scares me a lot .. the more I read the more I see reaction problems and people who have not recovered from some of the side effects. I probably wouldn't have the fear except my google searches have found so many blogs from people who've not had good experiences with it .. and -- none of people that have. I'm sure there must be some positives as they wouldn't be performing the treatments but its pretty scary reading so far..

[Hopeful]

Hi wyle.e.kyote,

Wow - You have had a wild ride!

Make sure that you are being seen at a facility that has experience with the treatment of AA/MDS and the administration of ATG. Consulting with an expert in bone marrow failure diseases is key to proper diagnosis and treatment. Don't be afraid to ask your doctor how many other patients he has treated with this disease and whether the hospital has experience administering the ATG. If they aren't experts, use this time to consult with one. I can not stress the importance of this!

Why do your doctors think that you have Unclassified MDS? Why were you given prednisone and rituximab? Did your doctor run you through a battery of tests to rule out other possible causes of your bone marrow failure?

It is common to do a skin test before administering ATG to determine whether you are likely to have an adverse reaction to it. Confirm that the hospital does this!

Everyone is different, but for me the ATG was no worse than a bad flu. It is scary the first night as you can spike a very high fever. However, if you are in a good facility, the nurses will react accordingly.

Best of luck! Keep in mind that people who have an uneventful experience with ATG are less likely to write about it.

[Marlene]

what are you doing to get your B12 and folate up? And did they check your copper, zinc, Vitamin D and B6 levels also. These all play a critical role in blood production. Your B12 needs to be over 500.

Your B12 is low and needs to be corrected.

IMO, fix the nutritional issues before attempting ATG.

And as hopeful states, make sure you are treated by someone with lots of experience with blood disorders. And a second opinion is always a good idea.

Here's a thread on a study regarding low B12. You can do a search to find more discussion on it.

http://forums.marrowforums.org/showthread.php?t=2507

[marmab]

Hi,

I am writing to say "ditto" to everything that Hopeful stated. If you do, in fact, have ATG/CsA treatment, you will probably have a better (not sure that "better" is the right word!) experience at a facility that is experienced in administering ATG, one staffed with expert docs and nurses.

And she is right about people not commenting or posting if they haven't had a bad experience. I sailed through my first ATG, so I've never posted about it, because many folks do have a hard time with it and I've felt that it would seem a bit smug, uncaring and unsympathetic saying that it was a walk in the park for me (but it was!). The hardest part, actually, was being cooped up inside for 5 days; I'm used to being very active and outdoors as much as possible.

I was in the hematology oncology/BMT unit of the hospital, so I had a large private room with a table and chairs by the window where I could eat, read, use the computer, hang out with visitors, etc. There was a solarium/library/lounge with a stationary bike down the hall. Wouldn't you know that there was also a Starbucks down in the lobby that I kept fantasizing escaping to, but the nurses indicated that would be pushing it.

The hospital followed the standard protocol in administering the ATG (pre-meds, monitoring, etc.) and the only reaction I had was a minimal fever the first night, after the first dose of ATG. That was it! Subsequent doses on the following days were completely uneventful. Expect that the ATG will do a number on your counts, though, so you will probably need transfusions which, again, were easy because of the PICC line (which makes blood draws, med administering and transfusions easy. I, too, have been transfusion dependent all along at about the same frequency as you). The ATG slowed my heart rate, which was continuously monitored, but this did not affect how I felt at all. When I got out after 5 days I went right back to my regular activities -- no sign of serum sickness, etc.. I am used to being very active and healthy, so maybe that helped -- don't know. Alas, though, I really did not have a response (well, maybe a tiny one 7 weeks out), so I am scheduled to go in Monday again for a second ATG. I'm REALLY hoping that I get some response this time!

All my best to you, and hoping that if you do go through with the ATG, that your experience will be as uneventful as mine. Hang in there and stay positive!

Marmab

[Neil Cuadra]

I can clarify one fact: what MDS-U means.

Even though it's called "Unclassified MDS" it does represent a specific condition:

• You have one or more cytopenias, meaning that your red count, white count, or platelet count is low (not necessarily all 3).
  
  
• You have abnormal changes in the structure or form of your white blood cell precursors.
  
  
• You have abnormal changes in the structure or form of your platelet precursors.
  
  
• You do not have abnormal changes in the structure or form of your red blood cell precursors.
  
  
• Your blast counts are normal in blood and bone marrow.
  
  
• You aren't in the RCMD (Refractory Cytopenia with Multilineage Dysplasia) category. The difference depends on how many cytopenias you have, your monocyte count, and which and how many of your cell precursors are dysplastic.

1% to 2% of MDS patients fall into the MDS-U classification category.

[wyle.e.kyote]

Originally Posted by Hopeful

Hi wyle.e.kyote,

Wow - You have had a wild ride!

Make sure that you are being seen at a facility that has experience with the treatment of AA/MDS and the administration of ATG.

Why do your doctors think that you have Unclassified MDS? Why were you given prednisone and rituximab? Did your doctor run you through a battery of tests to rule out other possible causes of your bone marrow failure?


It is common to do a skin test before administering ATG to determine whether you are likely to have an adverse reaction to it. Confirm that the hospital does this!

I am (now) at Medical City in Dallas under the care of Dr Bhusham. My understanding is that he has done several hundred stemcell transplants and "many hundreds of ATG" He does seem very personable and very willing to consider questions and provide answers. His staff seems very conscientious and there is much less of a "revolving door" feel here than there has been with my last two hematologists. This is a stem-cell facility attached to the hospital. They have an entire floor dedicated to marrow issues. Between the time I posted the original message and now I've talked to people undergoing ATG on the floor as of right now.

They tested me for all sorts of things .. Including a stent with an infectious disease doctor. I've had multiple CTs, and MRI, more bloodwork than I care to imagine. My spleen is normal sized and liver and renal functions are normal. I will have my third marrow biopsy a week from Thursday (I've had 2 different pathology clinics handle the samples, this will be the third (second time with this doctor) and done just prior to the ATG.

Originally Posted by Marlene

what are you doing to get your B12 and folate up? And did they check your copper, zinc, Vitamin D and B6 levels also. These all play a critical role in blood production. Your B12 needs to be over 500.

Your B12 is low and needs to be corrected.

Since my B12 was low they gave me B12 shots while in the hospital back in November. It has been at "therapeutic levels" since about December 12th. I currently take 5000mcg 3 times a day. It was 1130 as of 2 weeks ago. Folic normalized as well about the same time

Copper, Zinc, Lead, Mercury, Arsenic, and other heavy metals have been tested for and ruled out.
Radiation exposure was also considered a possibility as I was in Japan doing rescue work just after the typhoon. It was ruled out.


Initially Vitamin D was a little low, but they didn't have me do anything special for it, other than just "eat better" its been normal on all the subsequent tests.

Originally Posted by marmab

Hi,

I am writing to say "ditto" to everything that Hopeful stated. If you do, in fact, have ATG/CsA treatment, you will probably have a better (not sure that "better" is the right word!) experience at a facility that is experienced in administering ATG, one staffed with expert docs and nurses.

Thanks Marmab, I truly hope I sale through it like you did. I am fearful of it as even as of Friday I had another transfusion reaction.. Nothing like a body full of hives -- even after the IV of diphenhydramine its taken most of the day for them to clear.

Originally Posted by Neil Cuadra

I can clarify one fact: what MDS-U means.

Even though it's called "Unclassified MDS" it does represent a specific condition:

• You have one or more cytopenias, meaning that your red count, white count, or platelet count is low (not necessarily all 3).
  
  
• You have abnormal changes in the structure or form of your white blood cell precursors.
  
  
• You have abnormal changes in the structure or form of your platelet precursors.
  
  
• You do not have abnormal changes in the structure or form of your red blood cell precursors.
  
  
• Your blast counts are normal in blood and bone marrow.
  
  
• You aren't in the RCMD (Refractory Cytopenia with Multilineage Dysplasia) category. The difference depends on how many cytopenias you have, your monocyte count, and which and how many of your cell precursors are dysplastic.

1% to 2% of MDS patients fall into the MDS-U classification category.

I have full Pancytopenia as all three lines are low. monocyte count has always been between .15 and .3 (at least since i've been getting twice weekly CBCs and tracking it)

Quoting from the Marrow Biopsy

BLOOD:
MARKED NORMOCHROMIC / NORMOCYTIC ANEMIA
MARKED THROMBOCYTOPENIA

BONE MARROW:
30% CELLULAR MARROW (HYPOCELLULAR FOR AGE) WITH TRIUNEAGE MATURATION.
NO INCREASE IN BLASTS.
NO DIAGNOSTIC EVIDENCE OF AN INFILTRATIVE DISEASE.
MILD DYSERYTHROPOIESIS PRESENT.
DECREASED NUMBERS OF N1EGAKARYOCYTES.
MARKEDLY INCREASED IRON STORES.

Flow Cytometry - Leukemia/Lymphoma Profile:
No definitive immunophenotypic evidence of high-grade hematopoietic neoplasia, Iymphoproliferative disease or
plasma cell dyscrasia.
Abnormal cells: None detected

Peripheral smear:
WBC: The neutrophils display normal nuclear segmentation as well as cytoplasmic granulation. There is
no evidence of a neutrophilic left-shift. Lymphocytes are heteromorphous and monocytes are
morphologically mature.
RBC: There is marked normochromic, normocytic anemia with mild anisopoikilocytosis.
Polychromatophilic cells are present, as well as red blood cells with basophilic stippling.
Platelets: The estimate agrees with the reported count which shows marked thrombocytopenia. Platelet
morphology is unremarkable.

Thank you all for the kind replies .. This is truly an unexpected and life altering event for me and I'm still in the over-load-myself-with-research phase of things. Hearing (and now talking) to people with successful ATG (or at least with less than debilitating side effects) has been quite helpful.

[triumphe64]

Before going to Medical City, Dr Bhusham, was teaching at UT Southwestern. When I first got PRCA, my first local hematologist was consulting with him on my condition. I met with him once, and he was very informative. My new local hematologist teaches at UTSW and she speaks very highly of him as a colleague.

[wyle.e.kyote]

I just came home from a lovely week of ATG / Cyclosporine.

A couple of learned lessons .. Some of this is common sense, and has been said before on these forums .. I cannot reiterate that you are in-charge here and to throw a freaking hissy fit if things are not right. The first lesson is that if the nurse/ptc etc has not worked with an ATG patent before, demand a change .. I ended up with a "swing nurse" who had no idea what to do when I started having it bad. I'm not sure who was more scared, her or me .. but it was not a good scene. There were several minutes of being left alone in the room with hives and major rigors while she ran to get help. I don't blame her .. I blame the hospital and my own willingness to accept things which in hindsight I should have never accepted.

The second lesson is, that when the hospital takes 7 hours to admit you (after having been on the list for a room for ~2 weeks) puts you into a situation where is not-quite-what the doctor ordered. Get out and start over. You can always come back. We might be transfusion dependent but we are not invalid. There is no reason for that type of risk..

Fortunately, I survived and lived to tell the tail ..

I am told that my reactions are/were "mild" by comparison ..


Day 0:

I arrived at medical city at 08:30, spent time getting prepped in the oncology clinic .. by noon I was in general admitting. Thats when things started to slide .. I was told that my room was not available "for a while" .. I asked them to define "while" in the form of minutes or hours .. which they couldn't. "Do I have time to eat?" -- "Maybe, we don't know" What should we do? "Let us know when you come back" -- swell .. so we wonder around the little cafe area and find some nice grilled panini sort of thing (turns out this is the best food in the place) By 5pm I'm in the room on the 9th floor. The PICC crew comes in and takes care of the installation in a quick and professional manner .. It took maybe 5 minutes after the prep to get the line installed. Things are looking up ..

not

Since I am low on platelets and red blood cells they decide go head and infuse me overnight; getting me ready for the ATG in the morning. I've had issues with platelet reactions in the past and have a pretty strict regiment of what I take when .. Solumedral 20 minutes before, Diphenhydramine 10 minutes before. We've done this so many times the doctor has standing orders ... but apparently they were not explicit enough. This place is (obviously) suffering from a too much to do, not enough focus and it should have been a clue to me [ see lessons above ] the nurse came in and gave me my meds ... then left .. over an hour passes and I still haven't gotten my blood products started. I finally push the call button and ask if we are going to get this started .. and a few minutes later the nurse runs in with my bag of platelets (who knows where this bag has been) and hooks me up .. I ask "Shouldn't we remedicate?" Oh no sir .. you'll be fine ..

within 5 minutes I was not fine .. The nurse starts the platelets up and immediately my eyes start to itch .. The nurse is gone now .. I'm alone in the room and I pounce on the call button .. -- nothing -- time passes .. I hit the button again .. my vision is almost gone now as the hives have formed in my eyelids closing off my vision .. I try to reach for the infusion clamp to shut it off but I can't find it .. and the rigors are starting up .. some part of me is concerned about the PICC line as I don't know how it works or if I can clamp it off - or how the clamps work (should have paid more attention to what they were doing) Hit the call button again .. this time there is a response "we will be right with you" ff--ukk---ck th-at-- i need -- help!!!! That seemed to be the right words .. someone comes in the room - no idea who it was .. but I remember the words "oh ****" followed by some yelling .. then the room is full of people. Things are a bit blurry on details .. I remember someone putting an O2 mask on me .. I remember several calls for medicines .. and mostly I remember the rigors and shakes ... how it hurt so much and nothing I could do would slow them down or curtail them .. Then waking up about 2am from all this covered in sweat .. everything was wet .. the bed, the floor. etc .. probably not a dry spot within 10 feet of me .. A very concerned looking nurse was in the room, she'd apparently been there since the rigors started to subside .. and I'm not sure when she left as I had fallen back to sleep when they started the red cells. (fortunately I've never reacted to those) -- I never have seen the original nurse they left me with .. But every nurse I encountered after this knew the story already so I suspect I was the subject of much shift-change conversation.

[wyle.e.kyote]

Day 1
Beginning Numbers: WBC(1.2) RBC(2.79) HGB(9.1) HCT(25.4) PLT (35)

Premeds started at 8am ..

Doctor comes in at 9:30.. We visit for a while about yesterdays festivities .. he's a little aggravated and says that he's now written explicit instructions regarding my care .. (and to his credit, they are quite explicit)

Around 10am the big bag of ATG shows up .. I've now talked to the nurse and they are answering questions that make it sound like they know what they are doing .. They can clearly identify the expected reactions and we've walked through the monitoring program -- which matches what the Doctor and I've already discussed.

The ATG starts .. it will be about 10 hours at the selected flow rate. Things are looking up. About 6 hours into this without any reaction (other than the indigestion due to the awful food) I'm starting to feel a bit cocky .. after yesterdays festivities things are really feeling pretty mild ... then it gets cold .. so cold .. I am chilled ... The nurse has been in and out of my room often, but never more than 10 minutes of abandonment -- at first they never left my side, but as things progress without incident there was a little relaxing of the process. We even joke about it a little. However, this time when he comes in and sees me he acts quickly. He turns up the IV on the saline and hits me with solumedral .. calls someone stating we are having a reaction .. I'm not sure what transpires again but I'm shaking and on O2 again .. The doctor has been called and they've pushed Meperidine as I am hurting along the chest .. my respiration is feeling impaired and my heart rate is sky high. The chest pains grow into my back and my entire left side is feeling like its being crushed .. They turn up the o2 and push morphine. Its worse .. they called the doctor .. I can hear the nurse on the phone with him .. I'm now covered in multiple blankets and oh-my-god it hurts .. they push morphine again. and like someone hit a switch its gone .. and I'm back .. Dripping wet again .. but its like nothing happened. The rest of the night was uneventful.

Day 2

Beginning Numbers: WBC(1.8) RBC(2.15) HGB(7.1) HCT(19.9) PLT (12)

Obviously the ATG has hammered my platelets pretty hard .. so we are going to start the day with a platelet transfusion. This is quite a bit different as they've appeared to have had some serious regrooving and we are prepping like for a major surgery (I find this a welcome change) The doctors orders are followed to the letter. At no time did my nurse leave the room and -- thankfully enough -- no reaction .. smooth as glass.

The doctor comes in about 10:30 and we chat a little about the progress and he says not to be concerned about the platelet drop "Things will get lower before they get better"

ATG gets started about 11:30 .. higher rate this time -- only 6 hours. A few hot flashes but no other reaction directly related to the ATG.

I'm starting to having trouble with over-hydration, they put me on Lasix (Ghods I hate Lasix) So I spend all night getting out of bed .. peeing .. go back to sleep .. 15 minutes later .. repeat .. for 3-4 hours .. finally things shut down about 3am ..

[ I've run out of time so I will finish Day 3-4-5 tonight or tomorrow ]

[Neil Cuadra]

Originally Posted by wyle.e.kyote

...I am told that my reactions are/were "mild" by comparison...

wyle.e.,

I'm sorry you had to go through all that. Other patients have had somewhat similar difficulties with the first day of ATG, although each patient's experience is a bit different. But that initial ATG reaction in combination with the previous platelet reaction was a really tough double punch. It's hard to read your story without cringing, but thank you for posting it. You give us advice we can all use.

[wyle.e.kyote]

Day 3

Beginning Numbers: WBC(1.0) RBC(1.15) HGB(6.1) HCT(17.4) PLT (9)

Ok, we've hammered everything now .. I wake feeling bad .. Its been kind of a rough night .. There's something going on with my cardio situation. I've not had cardio problems in the past (though I guess technically I've not had any of these problems in the past so its all new) My pulse is dropping into the low 40s and my BP is very high .. Especially the diastolic numbers. I'm seeing numbers 185/95 which for me -- are scary ... my normal pre-treatment numbers were typically in the 115-125/55-65 range .. And there is a chest pain .. which is situated on the left side .. not quite the heart but below the breast area.

Doctor comes in about 11, ATG has already started, we talked about the chest pain a bit and he doesn't seem concerned .. Its still pretty mild .. The BP can be because of a number of factors, including the medications etc .. so don't worry about it ..

about 3 PM I'm finishing up the bag of ATG -- about 100ML or so left and the chest pains get really bad .. in the lay out on the bed and cry kind of bad .. I'm flat on my back now with O2 .. my HR is dropped into the high-30s and my BP is 202/99 They get the EKG team in .. "Other than the pulse rate" its fine .. They give me morphine --- nothing .. 30 minutes go by .. the pain is still there .. another shot of morpine ... and nothing .. at this time I'm starting to feel dizzy and ask them to get the pulse ox machine .. and again -- light a light I'm back .. no pain .. it just vanished. SPo2 comes out in the mid 90s and my BP drops back down .. heart rate goes up to the high 50s.

Transfusion of 1 platelets and 2 RBCs goes uneventful, though at around 1am they decide I need Lasix. Apparently I've picked up a UTI as peeing has become painful .. Lasix and UTIs just don't mix .. so now I'm up most of the night peeing, hurting when I'm peeing and crashing back into the still somewhat wet bed to try to get some sleep..

Day 4

Beginning Numbers: WBC(2.8) RBC(2.84) HGB(9.0) HCT(25.6) PLT (9)

After last night, I'm really not awake much .. they come in and do the pre-meds on schedule and hook me up to the ATG .. I take a shower and get clean linens onto the bed ..only to fall asleep shortly after that. I wake when the doctor comes in the room a little afternoon. We talk for a bit about the treatment and the plans for the next couple of days which basically consist of monitoring and "seeing how it goes" I order lunch after he leaves and promptly fall asleep again

Lunch shows up and I wake and eat ..and pass out again .. I'm not sure when they took the tray away .. but they dutifully picked it up without disturbing me. Around 3pm I'm down to the 100ML at the end of the bag and the chest pain starts up again. It begins slowly .. starting in the back shoulder .. I think about asking for a heating pad .. (maybe that will feel good?) But I don't get much time to contemplate it as it goes from "interesting" to "ouch" to "omg" in about 2-3 minutes .. The nurse is with me and she basically say "What do you want" -- Not to miss a beat I reply "Morphine" she says "We don't give that normally" I reply "look in my orders" she does, and oh thank heavens the doctor has put "morphine upon request" as a standing order .. She preps it and pushes it without further question ... 30 minutes later the pain is gone and I'm sitting up in bed. The remaining ATG is dutifully drained into my system and I breath a sigh of relief .. I've survived the first part of this ... Now we wait to see if it works or not.

My kid sent me this at the end of the treatment cycle .. they are just as twisted as their old man : http://youtu.be/NCt2nZF2nLk

[usaf1125]

You are right, you are in charge, sometimes it does take a lot of sreaming to get attention. A couple of years ago, I was admitted with another condition,they drew blood samples I asked the results on my CRT it was at 27.5. I told the nurse I needed 2 units of blood, I was informed that they never give blood at that level, has to be much lower. I asked the nurse if she knew what MDS was, surprise she had no idea. I used my phone to call the Infussion room, told them what was happening, they called my Oncoligist, I got my blood. Don't assume they all know what they are doing, I even had nurses that didn't know how to access my Port. Scream and Holler, it's your life

[wyle.e.kyote]

its been 20 days since my release from Medical City. It has been 10 days since my last transfusion of any type. I have not received a red blood cell transfusion since the 23rd of April. Prior to this, I could not make it past 8-10 days without both reds blood cells and platelets.

The red line has held steady in the mid 3s.. the platelets in the teens and the white counts in the mid 2s. There hasn't been much improvement, but steady state is an improvement in-itself. The lack of decline is a significant step in this and while I don't want to get too optimistic, its important to note that the cells coursing through my system are mine now -- functions are low, critically low, but they are my growth which is what the hell which is ATG is supposed to start.

Theres been a lot of side effects with the ATG and/or the other medicines the've put me on. I'm still on huge doses of steroids. We are tapering down 10mg every 3 days, as of today thats 80mg of prednisone, 200mg (x2 daily) cyclosporin, Priolec, Nupogen, etc. Along with Lantus and Humilin R to control the medically induced diabetes.

My blood pressure was sky high coming out the the treatment. (see attached graph) and my bloodsugar level is still out of control during the day. Reaching 600+ at peak, before falling off to 90 by morning. This is probably of the most concern at them moment as its starting to effect other processes and having other side effects. The balancing act which is the human system is hard to control. You learn that more every day when going through something like this. Your bodies ability to regulate itself under normal situations is something to behold .. watching the physiological changes and feeling the effects of the ATG both good and bad and wishing there was something to do that would make things better, even knowing that this is better.

[wyle.e.kyote]

Its been 6 months since my ATG .. In July I was heading to a stem cell transplant full steam .. in August things started to change .. In October -- we have remission ..

I feel like I need to have one of those signs that says "Its been X days since the last industrial accident" only in my case it would say "transfusion" In this case its been over [45] days since I've needed a transfusion of any kind.

The days are sometimes good .. sometimes bad .. there are many new aches and pains to get used to .. occasional hot flashes .. cold sweats. Fevers, chills, etc ..

The good news is .. all the counts are up .. H&H is almost normal. Platelets are above 50 and climbing at the rate of 2-4k a week. The doctor is even starting to say "remission" and other positive things about my case ..

The real issue is .. noone knows why .. We want to credit it to the ATG, but its just past the point where ATG is supposed have been effective .. Though they tell us there has been one other case where there has been a delayed response to the ATG. Noone knows if it is truly stable either .. but for now . I will take it.

[ssdavi71416]

wyle.e.kyote

That is great news! I had my ATG the second week of April. 180 days since ATG treatment. I had my first positive increase in Hemoglobin today. The hemoglobin went from 8.0 to 8.6. No transfusions for 2 months. Platelets increase 2,3,to 4 each week. In ten days I went from 32 to 38. My WBC and ANC are 2.1 and 1.34 respectively.

Scott