Viruses and low Hb
 

Hi all. I've just been in hospital for 2 weeks with a mystery virus - chills and high fevers for about 7 days (wasnt pleasant). I normally have only a low platelet count but during this illness my Hb dropped and I needed 2 units of blood. I'm waiting for an outpatient appointment on Friday to have a good talk with my Hemo about what may have caused this.

Can a virus cause a drop in counts like this? I guess I really want to know if it's a progression of my MDS. My guess is that I will have to keep watching and waiting as usual to find out that answer.

Hope I start to get my energy back soon, without too much drama.

Thanks for being there to chat to. Julie xo

Hey Julie!

I can't point you to any studies, but I've heard form many folks on the list -- as well as from my docs, that infections, viral or otherwise, can have a negative impact on counts.

Glad you are done with the virus. I hope you start to feel better.

Take Care!

Greg

Hi Julie,

I had the flu last month with high fevers for about a week. When I got my blood test done on day 5 of the flu (I was starting to recover by then), my reticulocytes were about 0 and my platelets had dropped 30%!

So, if you had a fever lasting 2 weeks, I wouldn't be surprised if you ate through your reticulocytes, RBC reserves, and platelets. If you have no immature RBCs, you're circulating RBC's will go down. Hopefully, you are over your virus now and your next blood test will put you more at ease!

Thank you for that. It has put my mind at ease... I think. I can mostly put my MDS on the shelf, but when I get sick, all the worry seems to come back again. Oh well... just thankful I got through again this time. :)

Drop in Hb
 

Hi, Any time I get a cold my Hb drops 10 g/L (1g/dL using US units) and, so far, it has always gone back up on its own. My haema tologist said this was normal and happened to most, they just don't notice it because they have normal Hb.

Pam W. (MDS, dx February 2000)

counts
 

Platelets - truly in normal range now.... 169
Hemoglobin not far behind................... 10.9
WBC..... slowly but surely .................... 3.2
RBC....... taking it's time.......................... 2.94

Lisa,

Wow! Those are some outstanding numbers!

Congrats!

Greg

I'm jealous I wish my blood counts were in normal range. They kinda are except for my red blood cells :( maybe I should suggest to my Dr about during campath? But. I'm kind of skeptical about that because their are some serious side effects with that involved :( so Idk..

Hi Greg and Lori
 

Yes, I am pretty happy about them!!

Now I am beginning to get more focused on my PNH, which went from a 13% clone to a 20% clone. Dr. Olnes from NIH says nothing to worry about at this point. I think I will make an appt. to see Dr. Monica Bessler, here at Penn. I met her at the conference summer of 2010, and she was just relocating here to Philly and she did the presentation on PNH. I really liked her and she talks in a way a patient can understand!

I'm very happy that I did the Campath trial. As hard of a decision as it was back then, it turned out to be the right one for me.

Best of everything to you both!

Dear Lisa,
I was reading this accidently. Congrats to your blood counts.
Please can you explain, what the Campath trial is or was ?????
What drug have you been administered to become transfusion independent ???
I have MDS, still low-risk, but highly transfusion dependent (about every 18 days). To get rid of that is my highest goal.
I am not 5q-, so I am not a candidate for Revlimid.
Thanks in advance for answering.
Bergit

Campath
 

Bergit-

the Campath Trial at the NIH in Bethesda, Maryland, is primarily for people who have either AA or MDS. Most have tried other treatments, but I had not. The drug is Campath, which is FDA approved for other illnesses, but not currently for AA or MDS.

It is a 10 day, 2 hr/day, infusion of the drug.

I responded within 6 months. My counts went up, (after initally going down), and so it was the Campath that ultimately made my counts go up to where I haven't had a transfusion since June 9, 2009. (just about 2 years now). so, it was about 3 months before I was transfusion independent.

You can contact Dr. Matthew Olnes at the NIH if you want more information - or have your dr. contact him. He is the lead investigator for those with MDS.

Here is his e-mail. they have extended the trial, to the best of my knowledge.

olnesmj@nhlbi.nih.gov

Hope this helps.

Lisa

Thank you very much for your quick answer. I am living in Germany.
Maybe I schould call the doctor you named all the same, I mean from here.
Og course I can not take part in an American trial. Or do I?
Seems that campath ist similar to ATG.
There my doctor said it could be sth. for me together with ciscloporine.
But another hemo warned me and said I could risk a turn to AML with ATG.
Have you ever heard of that? They say the whites will be overstimulated by that drug.
And so I did not dare to try it. Big inerrogation mark. Maybe I should have...
What you write about campath sounds quite encouraging.
Greets, Bergit

Hi Bergit!

There are at least four of us on the list that have tried the Campath at NIH. You've already met Lisa Z.

Alyse Booth had Campath for AA. You can read about her experience here and http://forums.marrowforums.org/showthread.php?t=1943.

I've just had my six month follow-up after Campath for MDS. You can read about my experience here and at my blog here (I post the same thing both places.)

At the moment, I'm a "non-responder," but Dr.Olnes is still hopeful I'll respond (immunosuppression takes a while).

What they have found at NIH as markers of likely response to immunosuppression are younger age (under 60) and the presence of the HLA-DR15 marker. Other studies have found hypocellular marrow is also a predictor of response. But some older folks without tese traits have responded as well.

NIH treats folks from all over the world in their clinical trials. You might have to pay for most of your travel expenses, but the treatment, as I understand it, is at no charge.

Another helpful person to contact is the research nurse on the trial, Barbara Weinstein, email: weinsbar@mail.nih.gov. Phone: 301-594-4180.

You can find a description of the clinical trial here. And I wrote something about the theory behind the trial here.

My understanding of the advantage of Campath over ATG (theoretically) is that it more closely targets the CD-4 & CD-8 T-cells that are thought to be the bad guys in this type of MDS. It suppresses those T-Cells more completely and for a longer time than ATG. So, for most folks, no follow-up course of cyclosporin is necessary (though that is an option in the trial for people who have responded to Campath and then relapsed.) NIH has done solid retrospective research that shows neither ATG nor Cyclosporine is particularly effective alone; they work better together when treating MDS. They believe Campath is going to be even more effective.

I've probably overloaded you with info at this point, but do ask any questions that this stuff raises for you and I'll try to help.

Take care!

Greg

One of the exlusions for the Campath Trial is the following..

4.Prior therapy with combination chemotherapy

What exactly does that mean?

Hey Cheri!

The National Cancer Institute, which is part of NIH, defines "combination chemotherapy" as "treatment using more than one anticancer drug." It's my impression that that would include most chemo, since they generally hit you with more than one drug.

But you could definitely contact the research nurse or principal investigator and ask.

MD Anderson has a Campath trial underway that doesn't include that exclusion -- you just have to have been off certain other treatments for a period of time before entering the trial.

Take care!

Greg