Accepted into Campath Trial at NIH

[cathybee1]

Mixed bag or not, that's good news, Greg.

[Greg H]

Thanks Catherine!

More data tomorrow . . . if I can get through the snow and ice to the docs office.

Hope you guys are doing well.

Greg

[cathybee1]

Originally Posted by Greg H

More data tomorrow . . . if I can get through the snow and ice to the docs office.

Hope you guys are doing well.

Hey Greg, Bruce just beat the next round of snowstorms here to get his bloodwork and Aranesp injection.

The good news is that 2 months after his last transfusion, and 3 months after resuming Aranesp, his RBC is holding in the upper 9's.

The bad news is that his ANC level ain't great and the copper level continues to drop, is now at 58. He has an appt with the family doc next week and wants to raise the topic of a different kind of copper supplementation. Not all the results of the other tests (folate, B12, zinc) are back yet.

Otherwise, Bruce is still feeling okay, hauling firewood up the stairs every day.

Cheers, Catherine

[Greg H]

Originally Posted by cathybee1

He has an appt with the family doc next week and wants to raise the topic of a different kind of copper supplementation.

Hey Catherine!

Glad to hear about Bruce's RBCs; sorry to hear about ANC and copper. I was intrigued by those copper injections that Chirley mentioned. Though they didn't sound pleasant, hearing about that did remind me that most of the treatments for folks with significant copper deficiency seem to involve IV copper. Finding some way other than the gut to get copper into the system would seem to make sense, give that absorption appears to be the problem in some many cases.

I'm figuring on getting my copper checked at the end of the month at my family doc's office and then seeing what ideas he has, if it's still low. My blood docs are too focused on the MDS to be of much use on the copper front, so I'm hoping it will be of interest to my family doc.

Take Care!

Greg

[Greg H]

This, ladies and gentlemen, is more like it.

My labs for this week were pulled on Wednesday instead of Tuesday, because we had a significant amount of snow and ice early in the week -- significant, that it, for those of us living south of the Mason-Dixon line.

Hemoglobin was 8.9. That's a good number; but it should be good, since I was transfused with two units of packed red blood cells five days before the labs were drawn. Still, given that I have in the recent past burned through two units in a week, I'm feeling pretty good about an 8.9.

Even more positive along those lines is a reticulocyte count of 101. That's up from 77.4 last time and nearing the top end of normal. If my theory is right (I'm still confused about reticulocytes), I must be making some red blood cells.

Platelets have bounced back up to 70, which is a move in the right direction.

And my neutrophils are up to 1010, nearly recovered to the 1320 they stood at when I left NIH just after Thanksgiving.

Finally, I have a lymphocyte count of 210, also up from last week, an indication that the other parts of my immune system are recovering -- aside from the CD-4 T-Cells, which I imagine are still in the basement, which is why I took the Campath in the first place.

[Lisa Z]

Your counts are sounding good. That is great. Isn't it something how one of the biggest things we look forward to now, is getting our blood taken!

I go on Monday, for my major labs. I get them every 12 weeks now, so you can imagine how anxious I am. I am also going to have them do some test for my PNH, which I also have. I want to make sure that that part of the problem is stable and not increasing....

I go to NIH March 1 for my 2 year follow up! Can't wait for that. This time around, I'm making it a 4 day weekend and turning it into a very positive trip! Hope it doesn't disappoint me! It's been a year since I've had a BMB, so I really need one to confirm that all is OK....

Enjoy the rest of the weekend. Don't know about you, but we may be getting a bit of ice early Tuesday morning......

[Marlene]

Looking Good!!!!!

[cathybee1]

Originally Posted by Greg H

This, ladies and gentlemen, is more like it.

Indeed it is, we're so happy for this good bloodwork.

And if you ever figure out reticulocytes, let me know.

[Greg H]

Originally Posted by Lisa Z

I go to NIH March 1 for my 2 year follow up! Can't wait for that. This time around, I'm making it a 4 day weekend and turning it into a very positive trip! Hope it doesn't disappoint me! It's been a year since I've had a BMB, so I really need one to confirm that all is OK....

Hey Lisa!

Thinking about your impending BMB, I don't recall whether I've mentioned this before; if I have, please excuse and ignore the duplication. While I was at NIH for the trial, my roommate had a bone marrow biopsy in the room (behind the divider curtain, of course). The doc or nurse who did the procedure (a tall black member of the commissioned corps, and so in uniform, whose first name is George) used a fancy new electric drill apparatus.

It sounds scary, but, based on the sounds coming from the other side of the curtain, was a piece of cake compared to several minutes of manual grinding with the awl that it takes to get samples from my very hard bones.

There was the usual sharp intake of breath and whimpering when they extracted the liquid portion of the sample. But the extraction of the little pieces of marrow (the actual biopsy) was a matter of zip-zip with the drill.

Frankly, I hope they go for that option when I have my one-year BMB. If the grinding portion of the procedure is a problem for you, you might want to ask about the drill.

Take care (and watch out for the ice)!

Greg

[Greg H]

Thanks Marlene and Catherine!

We'll hope for continued progress when I go for labs on Tuesday.

Take care!

Greg

[Greg H]

Holy Reticulocyte Batman!

This week's labs were waaay better than expected. I fully expected to be spending this Friday in same day surgery getting an red cell transfusion. After all, it's been two weeks since my last transfusion, and I've been burning through red cells at a rapid rate.

But then I got Tuesday's labs. Last week, hemoglobin was 8.9. This week, 8.6. Sure, that's down, but it is much, much better than I expected.

On top of that, my reticulocytes (baby red blood cells) are up from 101 to 135.8. That's above the normal range, so I hope we're not overheating my red blood cell factory. (Dr. Matt Olnes of NIH tells me that the high retic count is likely just my marrow being very happy about making red blood cells and is a likely sign that the Campath therapy is working for me.)

Neutrophils also took a big jump, from 1010 to 1460. I figure we're going to be able to stop the ciprofloxacin soon.

Platelets are up to 74 from 70 and lymphocytes are up from 210 to 250.

I fully expect to need an RBC transfusion next week, but I'm glad it's next week instead of this week.

[Greg H]

I haven't posted my handy-dandy charts lately, so here goes.

This one is the platelets and Hgb and shows the up and down and up and down of the former. I haven't tried to note the RBC transfusions in here, but they have been regular since the Hgb started to slide.


Platelets n Hemoglobin by hankins.greg, on Flickr

And here's the Neutrophils and Lymphocytes. You can see the sharp dive my ANC took and the equally sharp bounce back.


Neutrophils n Lymphocytes by hankins.greg, on Flickr

Take care!

Greg

[cathybee1]

I'm liking this trend, Greg

[Neil Cuadra]

Greg,

Patients and stock market investors have something in common -- they both have to realize that big drops can precede even bigger gains. Thanks for the report on your better-than-expected results. Keep up the good work with those HGBs and neuts!

[Greg H]

Thanks Catherine and Neil.

Dr. Olnes said I should keep my fingers crossed. I didn't tell him I've had them crossed pretty hard for a while now. If I want more luck I may have to go sacrifice a goat or something!

Take care!

Greg

[cheri]

Neil~

"Patients and stock market investors have something in common -- they both have to realize that big drops can precede even bigger gains."

This statement was like a beacon in the dark for me today!

I have had 5 treatments of Vidaza, and this week was particularly trying, with 3 platelet transfusions (one didn't take, the other barely took, and the third got me to only 50K) and a 2 unit blood transfusion.! I had to postpone my bone marrow biopsy due to low counts.....
This was my nadir week, and I am anxiously awaiting some "big gains" starting tomorrow!

I printed the quote and hung it on my "wall of inspiration"!

Thank you for all you do for us on this terrific site!

[Paula W.]

Hi Cheri,

Please try to be patient with the Vidaza. My mom had many platelet transfusions when she started Vidaza. By the 6th round everything took a turn for the best. So please don't get down, try to be positive, and give it a little more time to work.

I saw my Mom go through the worry and fear when she started Vidaza and my heart ached for her. I feel for you too. Sending you a hug from Jackson, NJ

God Bless,

Paula

[Lisa Z]

Hi Greg-

Wow, that is interesting news about the new drill used in BMB @ NIH. I guess I'm good either way. I think it is the aspirate that bothers me more. They take so much "extra" at the NIH, it is one of the parts I really don't like.

Today I feel a little under the weather. Tired, a little nauseaus and both ears feel like I have a mild ear ache..... don't know what this is about. I rarely get sick, but maybe this will be all gone when I wake up tomorrow....

Hope all is going well for you. Anxiously looking forward to my 2 yr. follow up appt. on March 1.

Lisa Z.

[Greg H]

Lisa,

Sorry to hear about your symptoms. Maybe it's something you picked up at school. I hope it goes away soon.

Take Care!

Greg

[Greg H]

I'm writing this from a room at my local hospital, where I'm getting two units of red blood cells. I'd rather be out in the nice temporarily warm weather today, but I can't complain too much, since this marks a three-week interval between transfusions -- much better than my recent track record.

My hemoglobin on Tuesday was 7.9 -- just one point below my transfusion trigger -- so that's also not too bad.

My retic count dropped from 135.8 -- well above normal -- to 107.7 -- still well within the high side of normal. Dr. Olnes at NIH tells me it's pretty normal to see a bit of up and down in these counts.

My Neutrophils hit 1,700, so I am pretty darned close to no longer being neutropenic, depending on who's scale you use. This means I no longer need to take cipro. I've been fortunate not to have a lot of the bad gastric side effects of that antibiotic, but my stomach will nonetheless be glad to be done with it.

Lymphocytes are at 200 -- consistent with recent results.

Platelets are up a little more -- to 80,000. That's the best number since October.

The only negative I have to report is that I came down with a head cold yesterday. It's more annoying than painful, but I'll probably check with my docs to make sure I don't need to anything special -- other than suffer through it like usual.

Next Tuesday is my three-month follow-up at NIH. So far, things appear to be going according to plan. My neutrophils and platelets are recovering, I've sprouted a decent reticulocyte number, and I'm needing less frequent red blood cell transfusions. It will be interesting to see what the folks at NIH have to say about how my case fits into the success criteria of the trial.

[mausmish]

Greg, It sounds like you're doing very well! Sorry to hear about the head cold. They can be miserable under the best of circumstances. Take good care of yourself! Karen

[cathybee1]

Greg, it sounds like you're well inside the bell curve, a good place to be, all things considered.

Interesting where your cut off place is for transfusions -- that's just about where Bruce's is.

Sorry about your cold and having to be inside. I bet after all the snow you folks have gotten, the sun is very welcome.

[Greg H]

Hey Karen!

Thanks much! I am not a good person when I have a cold. Pain I can take. Fatigue I can take. But a head cold is my Waterloo. I will be sleeping as much as work will allow this week, which is not likely to be very much.

But I have all these nice new red cells, which is a plus!

I hope you made it home with power and not too much snow in the driveway.

Thanks!

Greg

[Greg H]

Hi Catherine!

I discovered that I had MDS when I showed up for an appointment with my family doc with an Hgb of 6.2. They thought they'd made a mistake at the lab and took another sample to confirm. I honestly felt fine, though I had begun to wonder why I had blood pounding in my ears at night.

I had gone the emergency room with chest pains a nine months before, had an Hgb of 9.2, and did not follow up on the ER doc's recommendations to see my family doc promptly.

So, I think my Hgb fell over a long period of time and I just got used to it. My local hematologist and I agreed we'd use 8.0 as the transfusion trigger. Below that, he said, we're making the heart pump too hard.

So I've been trying to follow his advice. The good thing about my high tolerance for low Hgb is, if this Campath experiment can get me holding my own, without transfusions, someplace in the 9s, I will be just fine with that.

Take care!

Greg

[Neil Cuadra]

It's true that people get used to lower counts that drop gradually, just as people who live in a certain climate get used to the temperature and consider that normal. (No, that doesn't apply to crazy snowstorms!)

My wife was running on low HGB for months before she was diagnosed. She'd get very tired from carrying a large package, walking uphill, or riding a bike, but we were clueless that there was a serious problem until she had routine CBCs and learned that her HGB was 4.7.

Like the pounding in your ears, the symptoms make sense in hindsight but they didn't tip us off.