Accepted into Campath Trial at NIH

[Greg H]

This week's labs were great!

Hemoglobin was 10.4. Of course, I had been transfused with two units of red cells three days prior to the blood draw. Still, it was kind of fun to see double-digits, even if it's not real.

Also on the red cell front, reticulocytes were at 125.5. That compares to 107.7 last week and 135.8 the week before. So, the count is bouncing around, but all three of those results are either on the high side of normal -- or better than normal. So the red cell factory is still churning out baby red cells.

Platelets were at 100. The last time they were above 90 was in March.
Neutrophils were off slightly from last week, at 1510, down from 1700. Lymphocytes were flat, at 210 compared to 200 last week.

I also had my first appointment with my family doc since diagnosis, and it went quite well. Kidneys good, liver good, glucose good, thyroid good, cholesterol fantastic. All of which is significant only because having other stuff to deal with while dealing with MDS ("co-morbidities," in doc-speak) makes dealing with MDS a much bigger problem.

My family doc did find my serum ferritin at 1623 ng/ml. From looking around marrowforums, it sounds like that's high enough to be of concern. So I'm ordering some wheatgrass tablets.

[Neil Cuadra]

Greg,

Congrats on your many good test results. You're showing everyone how it should be done.

[cheri]

Hi Greg
would love to learn more about them...currently I am on Exjade--
Congrats on the good news!

[Greg H]

Originally Posted by Neil Cuadra

Greg,

Congrats on your many good test results. You're showing everyone how it should be done.

Hey Neil!

Thanks much. I'm hoping they hold up and felling pretty confident they will. The high retic count is a really good sign. It's the RBCs that have been my problem, so I'm happy my marrow has decided to make some!

Have a great weekend!

Greg

[Greg H]

Originally Posted by cheri

Hi Greg
would love to learn more about them...currently I am on Exjade--
Congrats on the good news!

Hey Cheri!

Take a look at this thread that starts with a post from Margarete about her success using wheatgrass powder. She shares a link to an abstract of a really interesting study in which researchers used 30ml a day of fresh wheatgrass juice to lower iron levels. The study looks solid, and Margarete's experience suggests we might be able to get some help without growing our own grass.

I've ordered some wheatgrass tablets from an organic farm in the midwest that seem to have a good story. I've read that some tablets may be hard to digest, so I'm going to test how well these dissolve before deciding whether to eat them whole or dissolve them in my tea.

I haven't had a conversation about iron with my docs yet, so I don't know how they fell about a 1600+ ferritin level. But I figure the wheatgrass probably can't hurt me.

I'm out in the country, so mail order made the most sense for me. But I found that one company -- Amazing Grass -- appears to have a high-quality product that you might be able to get at Whole Foods or some other store that handles supplements.

Or, if you live in a town big enough to have a juice bar, you might be able to get your fresh wheatgrass fix there. Here's a pic I took a couple of years ago of a juice bar growing its own grass in the Reading Terminal Market in Philadelphia.


6Y270437.JPG by hankins.greg, on Flickr

Take care!

Greg

[cathybee1]

I am so encouraged by your bloodwork #'s, and how your other systems are doing so well. Those baby blood cells of yours are awesome!

So there's wheatgrass in your future, eh? I'll be very interested in your wheatgrass tablet experiments. I added wheatgrass (the fresh kind) to Bruce's green drink today. Our local market sells a 2" pot of it in their organic section. I'm experimenting to see if it resprouts after being whacked. I wonder how much fresh you need to generate 30 ml of juice.

Hope you're enjoying some better weather.

[Greg H]

Originally Posted by cathybee1

I added wheatgrass (the fresh kind) to Bruce's green drink today. Our local market sells a 2" pot of it in their organic section. I'm experimenting to see if it resprouts after being whacked. I wonder how much fresh you need to generate 30 ml of juice.

Thanks Catherine!

At some point I found the full text of the article that Margaret pointed us to (though I can't find it now) and made the note that the researchers used five grams of leaves to get their 30ml of juice. I have no idea how much that is in terms of volume, but, if you have the right kind of scale, you might be able to weigh some out.

I bet it will regrow, at least a couple of times. Reading the websites of the companies that sell the powder and pills, I noted a mention that they harvest more than once from the same plants.

Do you blend up the green drink or is it something you whip up in a juicer?

Take Care!

Greg

[cathybee1]

Hi, Greg. I did promise you this recipe, didn't I? This is a work in progress. It sounds awful but it's actually palatable enough that I drink it from choice. And I think it's a good way for someone who has a poor appetite to get some good food into them.

According to the Nutritionist I got this from, it is supposed to enhance RBC production -- but it is also high in iron-rich vegetable sources. Originally she recommended adding supplementary chlorophyll, but when she found out how high Bruce's ferritin level was, she suggested not doing so.

Making this requires a juicer and a blender. Instead of a blender, I use a vita mixer which high capacity and is powerful enough to grind up grain -- it's pretty heavy duty. I use all organic produce, of course. If you make this in a blender, you might need to blend it in stages.

Juice 1 medium/large beet, 1/3 head cabbage, 3-4 carrots.

This should net you about 2 cups of juice.

Put this juice in blender. Add 4-5 leaves of kale, 1/4 c parsley (don't need to chop these up), 3-4 ounces of baby spinach, 1-2 cups of apple juice, 2 T honey, 2 cups of frozen berries or fresh pineapple.

Depending on the capacity of your blender, this may fill it up. In my vita mixer, I liquify everything, then add additional spinach and kale to fill the container, and liquify again.

The pineapple and apple juice is good because it helps disguise the green taste. Bruce is allergic to pineapple so I use the berries, a mix of blueberries, blackberries and strawberries. This week I added the tops of a 2" pot of wheatgrass and 1/2 t. of cinnamon (which also helps disguise the taste).

If you make it, let me know what you think.

Cheers, Catherine

[Greg H]

Whoa! That is some green drink! I'm not sure if I have the guts to try it or not. Sounds seriously healthy, though. Maybe I'll try it when my vegan daughter is in for a visit. She's had stranger green drinks, I'm sure.

Have fun skiing!

Greg

[cathybee1]

Thanks, Greg. The drink definitely tastes better than it sounds --

[Greg H]

My week 11 follow-up was at the National Institutes of Health in Bethesda for my scheduled three-month visit -- a week early because of my real-life schedule. It was a fast, one-night, up and back trip.

My counts continued to look good, with hemoglobin at 9.5. That's down from last week's record-setting, right-after-transfusion 10.4, but not too shabby nonetheless. My last transfusion interval was three weeks, and, unless my Hgb falls off a cliff between now and Tuesday, I'm on track to make it four weeks this time. I have my fingers firmly crossed on that one.


Platelets & Hemoglobin by hankins.greg, on Flickr

Dr. Matt Olnes, Principal Investigator on the study and my go-to doc at NIH, told me he doubts the accuracy of the super-high reticulocyte counts I've been getting from my local lab. Last week's result was 125.5, right at the top end of normal, while the NIH result a week later was a middle-of the pack 68.2. But 68.2 is great, according to Dr. Olnes, because it suggests my marrow is responding to the immunosuppression.

Platelets were at 100, same as last week; and neutrophils came in at 1.77, up from 1.5 last week, and right at the bottom of normal. Lymphocytes were at 260, up from 210.


Neutrophils & Lymphocytes by hankins.greg, on Flickr

All of that is highly positive, Dr. Olnes said. None of it, however, constitutes hematologic response under the scoring system in use for the study, which is the standard International Working Group criteria that seems to be the standard. That's not a major problem, even though the median time to response was three months. Several folks who've been down this road haven't show hematological response until the six month follow-up. Given the positive direction of all my numbers, I'm figuring I'm on that side of the median.

I spoke with Dr. Olnes about my 1623 ferritin level, but he expressed little concern, at this point, Assuming the therapy works, he said, and I no longer need transfusions, iron overload shouldn't be a concern. But I've starting taking wheatgrass tablets to see if I can reduce the ferritin level using that natural chelator.

[Greg H]

On a side note, a test of my copper level last week put it at 66.

That's lower than the 70 it was at when we first discovered I was a bit copper deficient, but better than the 46 it hit back in September. That had risen only to 50 two months later, in November, so this 66 seems like considerable improvement.

I plan to continue my current regimen of 6mg of chelated copper daily and try having the test run again in a couple or three months to see if it has further improved.

Greg

[Greg H]

Margarete posted some very interesting information on wheatgrass as a natural iron chelator a few months back, including her own personal success story. Given my 1623 Ferritin level, I've decided to give it a try.

I ordered a bottle of 0.5 gram organic wheatgrass tablets from PureGreen Foods, which uses a grower in the northern US -- wheat country. The bottle suggested a dose of seven tablets up to three times a day. I figured I should ease into this whole thing, so I took three.

The results were nothing short of explosive -- not on my iron level, but on my GI tract. I have since decided an even slower easing into the wheatgrass experience may be a good idea. So I'm talking on a day this week and will double that next week, and so on.

The researchers in the study Margarete found gave their patients juice pressed from nine grams of wheatgrass each day. I figure the volume lost in drying the grass probably means that 9 grams wet might reduce to about a third of that dry. So six or seven 0.5 gram tablets a day might make sense. We'll see how it goes.

Meanwhile, if any of you feel a need to clean out your system, if you know what I mean, just take a couple of grams of wheatgrass and email me in the morning.

Greg

[lindy]

Hi Greg,

Haven't been here for awhile (bad cervical spine problem ), so great to learn of your good progress, congrats!

Continue to keep my fingers crossed for you!

What's this wheat grass thingy...let me read more.

[Lisa Z]

I think you're doing just fine. Give it a little more time.... to get even better. I think it took me closer to 6 months to see significant results.
I go for my 2 year follow up appt at NIH on March 1. Can't wait!!

My red count was 10.2 on my last lab results. This is an all-time high for me. Dr. Olnes told me it was likely my PNH that had been keeping it from really coming up to normal. He stated that sometimes PNH will burn itself out. I'm hoping that is the case for me, because there are times where I run myself down, physically, like this past week. I'd like to get to the point where that doesn't happen, although I don't let it happen too often.

Anyway, glad to hear you are on the right path!

[lindy]

Campath is helping you with MDS but not PNH?
You seem to be doing well, all the best for your follow up appt at NIH.

[Lisa Z]

The PNH is becoming a concern of mine over the last few months. I have been told that with only an 18% PNH clone, it is not an issue. IF it were to become 50-60% AND I was clinically symptomatic, that would be another case.

The Campath trial for MDS is really justs for MDS; it is even slightly different than the one they do for AA. (My friend on the AA trial has different anti-virul drugs, for example)..

There wasn't anything stated about PNH in the trial documentation, although one would think they would be somewhat related.

But, I will address this when I go down to NIH in a few weeks. As my husband put it, "now that your MDS is under control, what will you worry about next"? I guess PNH is my answer. (I tend to worry or stress out about something - not necessisarily health related). I do have a son who is a recent college grad - will be completing the Police Academy here in PA next Thursday - now I can worry about if/when he will find employment!!! It never ends for a mother

[Greg H]

Originally Posted by lindy

What's this wheat grass thingy...let me read more.

Hey Lindy!

Check out the link to Margarete's post on wheatgrass. Not only is her personal story very interesting, but the results in the study she points to are also pretty dramatic.

I'm not the kind of guy to jump on every bandwagon that rolls down the street, but what I've read about the current drugs for iron chelation isn't all that attractive -- plus they are quite expensive. With this study and Margarete's firsthand experience, I figure I'll give it a shot. Aside from GI tract acclimation, I don't think there's any chance the wheatgrass is going to hurt me.

Take care!

Greg

[Greg H]

Hey Lisa!

Thanks for the encouragement -- and congrats on your big Hgb number.

I hope that your March 1 appointment goes well -- and that the weather is nice enough for you to enjoy a few days in the DC area.

Good luck to your son, too!

Take Care!

Greg

[Hawaii Bill]

Hi Greg,

I had high ferritin counts due to many tx as well. When I saw Dr Paquette in June 2008, 18 months post-ATG. it was 2200. He never mentioned it as a concern, but I was concerned about it, and when I asked my hematologist, he suggested that since I was no longer tx dependent, my body would tend to use the excess iron in rbc production, as long as it could not readily find iron elsewhere. So I reduced my consumption of foods that contain a lot of iron. I used to love to eat Wheaties, or Total, but they contain 100% of the RDA of iron! Indeed, most cereals contain quite a bit of iron. Certain veggies too, but I've never consumed a lot of them anyway (until recently, but that's a different story).

Once I started to watch out for iron in my foods, every month's lab results showed a reduction in ferritin. Some months the count jumped, but ferritin counts are volatile, so they were not a big deal. It was nice to get below 1000 the first time!

I'm down to normal counts now.

Good luck!

[lindy]

Did you have PNH after your MDS is under control?
I heard someone has PNH but all her counts are normal except platelets are low.
Are there ways to prevent your PNH clone from increasing? drugs? food?
Good luck & take care.

(Yes, we mothers' worries never end...)

@Greg, thanks for the link.

[Greg H]

Originally Posted by Hawaii Bill

So I reduced my consumption of foods that contain a lot of iron.
. . .
I'm down to normal counts now.

Hey Bill!

That makes perfect sense. Thanks for filling me in. It would probably make sense for me to go ahead and look for excess iron in my diet.

I appreciate the help!

Greg

[Greg H]

Things have been a little nuts at the office, so I haven't had a chance lately to provide an update on my progress post- NIH. And maybe it's a little bit the case that, having done my three-month follow-up at NIH, I've recognized that waiting for remission is a long-term project, so I'm not obsessing about it as much.

Knowing that the median time to response in the Campath study has been three months, I was probably, someplace in the back of my head, trying to meet that "deadline," deadlines being an essential part of my life.

I missed that deadline on my three month visit: my labs show consistent improvement, but not enough to score as "hematologic improvement" in the technical sense the researchers use to score results. So now, with no deadline hanging over my head, I'm living my life, taking my Valtrex and supplements, exercising every day, and obsessing less.

It's also been helpful to read posts from (mostly AA) folks on Marrowforums who've been down the immunosuppression route with ATG. There's a pretty good consensus that it can take quite a while for this kind of therapy to show results. And Lisa Z has been down this road and counsels patience. It's a waiting game, so it doesn't make sense to be impatient.

And, the fact is, my labs continue to show improvement.

The big news is that my interval between RBC transfusions is stretching out. I had my most recent RBC transfusion at Week 13, four weeks after the previous one. That's a week longer than the last time, and much, much better than what I had going on in December.

My last three sets of labs are a little wacky, because there are three different labs involved. Both my platelets and neutrophils have leveled off a bit from their peak three weeks ago, but neither is in the scary range. ANC is at 1500, just below normal, and platelets are at 75.


HGB & Platelets by hankins.greg, on Flickr

My Hgb goes up and down with the transfusions, of course, but, as I say, that interval appears to be stretching out.

My lymphocytes continue to recover slowly, after being whacked by the Campath.


ANC & Lymphocytes by hankins.greg, on Flickr

My last two reticulocyte counts (those are the baby red blood cells that indicate my marrow is working) are at 95 and 107. The folks at NIH think these numbers are a little too good to believe, probably because of some calibration issue at my local lab. But they continue to track with the numbers I was getting locally before my three-month NIH check-up, so I'm taking them as a sign of progress.

I see my local doc tomorrow, so he can assure the folks at NIH that I haven't grown another head. Next labs are next week.

Take Care Y'all!

Greg

[cathybee1]

Thanks for the update, Greg. I was hoping no news is good news, and for the most part, it sounds positive, especially the part about the transfusion frequency. The bottom line for Bruce is about how he feels -- and if you're feeling well enough to stay busy with your real life, that's wonderful.

[Greg H]

I've been neglecting posting any updates here, I think because I've recognized that waiting for Campath is, at least in my case, going to be a long process. The rounds of lab tests and transfusions get to be a bit plodding after a while, so I'm most apt to post here when something happens to thicken the plot.

That happened this weekend, when I managed to come down with pneumonia.

I'd had some pain in my back for about a week (and honestly don't know whether that was the incipient disease or just simple back pain). But, Friday night, the proverbial chickens came home to roost, when my rib cage on the left side suddenly began to feel like I was in an on-going knife fight. Every time I moved -- and sometimes when I didn't -- my invisible assailant would stick me between the ribs. At one point I was just sitting on the side of the bed when he stuck me time after time after time -- I must have taken two dozen hits before that set of spasms subsided.

The doc later explained that this is a side effect of pneumonia, an inflammation of the lining of the lungs and chest, called "pleurisy," which is a deceptively quaint, old-fashioned-sounding word for what feels being stabbed to death.

We considering calling EMS or heading to the emergency room, but the pain meds I had taken early in this process had me seriously woozy -- I couldn't even stand up. So, yesterday afternoon, we drove over to Emergency and a great doc named "Chance" figured out that, yes indeed, I have pneumonia.

Having your T-cells destroyed by Campath leaves you vulnerable to a particularly rare and nasty pneumonia called PCP (Pneumocystis jirovecii pneumonia). Because AIDS destroys the same T-cells as Campath, the sudden outbreak of PCP among young gay men in New York and San Francisco was one of the harbingers of the AIDS epidemic back in the 1980s.
Folk in the NIH Campath trial inhale pentamidine monthly to try to ward off PCP, which I have been doing religiously. We won't know until the blood cultures come back -- and maybe not then -- whether what I have is PCP or some more common variety of pneumonia.

Figuring out what I had took both a chest X-Ray, which was clear, and a CT Scan, which told the tale. After pumping me full of intravenous antibiotics, Dr. Chance wrote me a script for an oral version of the same thing and sent me home.

So, we'll be fighting that off for a few days.

On the MDS front, I again had a four week interval between transfusions last time and will have this time (my HgB was 8.3 at the hospital yesterday, so I'm figuring we'll get some blood on Friday.)

My lymphocytes hit 300 a few weeks ago and have hung on that number ever since.

Neutrophils topped out at 1.8 and have been sliding the past few CBCs, now down to 1,100 -- I'll ask my local doc about that when I see him next week.

Platelets have ranged from 65 to 120 over the past few labs. I've decided that folks, like me, with giant platelets, can't count on getting an accurate platelet count. If they just run your blood through the machine, it misses the big platelets and you get a low count. If the lab guys notice the big platelets and do a count under the scope, you get a better number.