How long should "watch&wait" period be??

[susansr]

I am very troubled. At 6 months post ATG, docs undecided what to do. MY platelets reached a plateau of 24-26,000, after 3 months, and that's where they remain. I require a RBC tx every 2-3 months to maintain an healthy Hgb and Hct count.

Now its ONE year post horse ATG, and nothing has changed. They say since I don't need platelet txs, its ok living with platelets at this level. But I don't understand why I cannot maintain a normal RBC count. Tests show I do make enough Baby RBCS, but they die prematurely. Why? I just don't know where to go from here or just sit tight and continue "watch&wait".

Thinking of going to Cleveland Clinic for 2nd opinion. Any being treated there?
Any comments?

Would so very much appreciate you all to weigh in!! Thanks. Susan.

[Lisa V]

Sounds like a second opinion would be a good idea, Susan. I'm all for not rushing things, but if you're still having to be transfused at 1 year, that does not qualify as a satisfactory response. Things may improve, but the odds are not in your favor, so I'd be exploring other options at this point.

Of course it all depends on what your other options are. To put things into perspective, a lot of MDSers live with those kind of counts. It's doable, so I can see where they're coming from, but as an AAer, you may have a chance at better results with a second round of ATG. What are your transplant options?

[Dick S]

I wish I had an answer for you, but I don't even have an answer for myself. I am MDS, so says the Hema/Onc Doc, but I have had to watch all three lines slowly, ever so slowly, decrease for four years now and I am still not into any protocol. As the counts inch downward, CBC after CBC, all I get is "not yet" "watch and wait" "it has to get worse before............blah blah"! I hate it.

[susansr]

Originally Posted by Dick S

I wish I had an answer for you, but I don't even have an answer for myself. I am MDS, so says the Hema/Onc Doc, but I have had to watch all three lines slowly, ever so slowly, decrease for four years now and I am still not into any protocol. As the counts inch downward, CBC after CBC, all I get is "not yet" "watch and wait" "it has to get worse before............blah blah"! I hate it.

Lisa and Dick: thanks for responding. It is so very difficult to hang in there; not being sick enough, yet, not feeling well either.
Since I am considering going for another opinion about just waiting or investigating "options" and I don't want to participate in clinical trials at this time, anyone out there who sees Drs. Brodsky or Maciejewski? Any east coast AA patients with suggestions on who to see??

[Lisa V]

Susan, if you do a forum search for each of those doctors' names, you will find postings by people here who have been treated by one or the other of them. I have no personal experience with either of them, but they both have excellent reputations. Everything I've heard has been positive.

I think Dr. Brodsky's treatment of choice is high dose cytoxan, I'm not sure if he does ATG or not (Marlene could tell you). I think he may be the only one currently administering that treatment too, so your feelings about that protocol would probably be the most important factor in making a decision who to see.

Dr. Young at the NIH is another name to consider.

[Marlene]

Dr. Brodsky treated John at Hopkins. We both like Dr. Brodsky....he's very committed to his patients. He does High Dose Cytoxan, ATG and BMTs for SAA. His baby is high dose cytoxan though....he started his clinical trial on it back in 1998 I think. He can speak to all of your options so you'll have a better understanding what's involved in each so you can make an informed decision.

I would get at least one more opinion about your status before you proceed. Maybe even two. Have you been checked for PNH?

Marlene

[susansr]

Appreciate everyone's advice. I didn't know about researching the docs on the forum--good idea.

I was aware of Dr. Brodsky's present approach to treating AA. Not interested at the moment and same with a NIH clinical trial at this time. I will continue to do my research on others in the field.

I was tested for PNH 2x and so far it has been negative.

Doing a bmb next week; we will see what shows!

[Gloria J]

Hi Susan,

I agree that a second opinion might be in order, but watch and wait is also not a bad idea. In 2009, at 12 months post-ATG (at NIH), I was offered the option of re-treat, or wait, since my counts were not that great - (Hgb in the 7s and 8s, Whites in the 2s, Platelets in the 20s). I wasn't eager to repeat ATG. so I asked to wait, and was very glad I made that decision.

By 15 months post-ATG, my counts finally started to climb, and my last transfusion was in June 2009. Yesterday, my Hgb was 12.7, Whites - 5.9, and platelets 105K.

I know how awful it is to go through one transfusion after another, and watch as only your Ferritin level goes up with each CBC. Depressing to say the least. But I am one (successful) example of a late responder.

I'd be happy to speak with you privately, in the meantime, hang in there, and consider all of your options.

Take care,
Gloria

[Hopeful]

Hi Gloria J,

How long were you on cyclosporine and how quickly did you taper? When did your taper start?

thanks!

[Gloria J]

Sorry it's taken so long to reply! I haven't been on Marrowforums in quite some time.

Post-ATG in April 2008, I was taking 550 mg/day, three weeks later, I went to 400 mg/day. Six months post-ATG, I went to 300 mg/day, then at twelve months to 175 mg/day. At sixteen months post-ATG, I decreased to 125 mg/day, and stopped the CSA completely at the one year mark.

My last transfusion was at about fifteen months after ATG, so I was definitely a 'late' responder, but my counts have been stable since with no meds at all. Hgb is in the 10-12 range, platelets took two years to hit the 50K mark, and are now over 100K. The WBC is actually in the normal range usually.

The good news, however, doesn't outweigh the bad. The AA is not a threat now, but the PNH has increased to the extent, that, in a few weeks, I will begin Soliris. We'll see how that goes. I'm looking forward to even better counts, though, since those darn blood cells won't keep bursting!

Hope all is well,

Gloria