Accepted into Campath Trial at NIH

[Sally C]

Hey Greg,
That is great news. You know that it took Don a long time to respond to Campath. Dr. Sloand told us they had patients that took a year or more. Keep the faith!
Best wishes,
Sally

[Greg H]

Thanks Sally!

I've been following your posts about Promacta. Good luck to you guys!

Greg

[Greg H]

Originally Posted by mausmish

Congrats on your hgb and retics doing a bit of a comeback . Keep up the good work! Karen

Thanks much Karen! Dig the wigs!

Take care,

Greg

[Lbrown]

Hey - not having to go for a transfusion is a GREAT day! Enjoy your week.

Deb

[cathybee1]

That is wonderful news about the hgb doing something unexpected...I hope this trend continues!

Catherine

[Greg H]

Hi All!

That little unexpected uptick (or less than expected downtick) in my Hgb didn't last too long. Though I went three weeks between transfusions, I was down to 7.1 at my usual Tuesday CBC, and likely below 7.0 when transfused on Friday.

My best guess is that the two-week 8.6 was ephemera, but who knows?

Different labs, different days, different results -- sometimes it seems like it would be easier if folks just came equipped with a hemoglobin meter. Or maybe you could get one installed, kind of like a PICC line. But, of course, then we'd be obsessively checking the thing all the time.

Before I hit Same Day Surgery for my two units of packed RBCs, my local hematologist hit my behind with some lidocaine and an awl. I should have some results from the bone marrow biopsy back in a couple of days.

Keep your fingers crossed that no nasties have cropped up. If all looks the same as May, we're probably going to have to do some serious thinking about Revlimid. I don't really mind transfusions, but every two weeks is probably pushing what makes sense to do on a long-term basis.

Take care!

Greg

[cathybee1]

Ahhhh....*#$%#.....

[Greg H]

Hey Catherine!

Thanks for the sentiment!

Hope you guys had a nice vacation.

Take Care!

Greg

[mausmish]

I echo Catherine's sentiments. BLEAH! It's just not fair. Hope the bmb results look good.

[Greg H]

Hey Karen!

I'm starting to have some fun with your blog songs (yeah, I know, it only takes me about 18 months to catch on to anything).

I knew that Joni wrote it, of course (and I still like her version best. There is no one who has ever been able to touch her fantastic idiosyncratic phrasing). But I also had this version by Dylan running around in my head. I figured it was on Planet Waves (very strange album), but discovered it was on this 1973 compilation called "Dylan," which I haven't heard in years because I have on vinyl (And which I think I have confused with Planet Waves). If I ever have a transplant, I'm going to disinfect my LPs and haul them all with me to the hospital with a USB turntable and convert all that stuff to bits and bytes so I can listen to it again.

And, now iTunes tells me the Counting Crows have cut a version, which I am going to go listen to now.

I'm glad your counts are holding up there. If I do wind up in the transplant ward, you are one of my inspirations. (Though I hope not to replicate the mouth and taste issues, even though I lived on Carnation Instant Breakfast as a kid -- hey! Maybe THAT's what caused this MDS!)

Take care!

Greg

[Janice M.]

Hi Greg,

Since my MDS diagnosis in May 2011 and the discovery of Marrowforrums, I check this site numerous times daily. I really appreciate all the knowledge and personal insights based on experiences and I feel that I know so many of you and I want to see how many of you are doing. Greg, I am disappointed to hear that your counts are down, and I am hopefully that your BMB is "nasties" free! Please keep us up todate.
One quick question, how does AA progress into MDS?

Take Care,
Janice

[Greg H]

Originally Posted by Janice M.

Hi Greg,

Since my MDS diagnosis in May 2011 and the discovery of Marrowforrums, I check this site numerous times daily. I really appreciate all the knowledge and personal insights based on experiences and I feel that I know so many of you and I want to see how many of you are doing. Greg, I am disappointed to hear that your counts are down, and I am hopefully that your BMB is "nasties" free! Please keep us up todate.
One quick question, how does AA progress into MDS?

Take Care,
Janice

Hey Janice!

Thanks for the good thoughts.

You know, typical of the human being, since being diagnosed with MDS, I have focused on MDS and not paid nearly as much attention to AA, despite the fact that some of my best buds on marrowforums are AA folks.

Consequently, I don't know the answer to that question, though I would love to understand it better.

My impression is that, in the space that you occupy, with your hypocellular marrow, it can be a bit tricky to differentiate AA from MDS. So "progression" from one to the other may be, I'll bet, not so much a change in condition as a change in diagnosis.

But that's a guess, and I hope that Hopeful, Lisa V, or one of our AA buds will weigh in on that subject. In fact, maybe we can post this question as a new thread over in the AA forum and get folks to talk it over. I'll do that after I finish this.

I do think it's an important question, particularly for you. Because the therapies that seem like a good idea for MDS are not always a good idea for AA -- Campath as a frontline therapy being one example: nice results in younger folks with MDS; lousy results as a frontline therapy for AA.

Take Care!

Greg

[Greg H]

Hey Janice!

I started a new thread to see if we can get an answer to your question about AA progressing to MDS.

It's here.

Take care!

Greg

[cheri]

Hi Greg~
I was hoping that you were going to be on the boards today, but sorry to hear about your numbers. You are so encouraging and inspiring and I want you to get a break! Mine #'s dropped as well and I'm more confused than ever......could that one dose of steriods (dexamethasone) that I took as premeds for the clinical trial that never happened, have boosted my #'s for a week? How to you make sense of how and why your #'s fluctuate so much?

Still no transfusion this week, but most likely next...wbc 1.5, hg 8.5, Pl 34.....so what the heck, I'm going back and camping in the rain some more....

What I find the most wearing is the Russian Roulette sensation, every day. And yet some people are much worse off than I am. Frustrating...

As always, hang in there....I am hoping and praying that your BMB comes back clean as a whistle and that your blood donor sparks something good in your marrow!

Hey, you never know

[Janice M.]

Hi Greg,

I found the new thread and have already read it! I will follow the discussion.
I had written something, but the storm here resulted in me losing it.

This was my lay understanding of the differences. I thought AA was a result of the marrow not producing enough blood cells. While MDS was the marrow production resulting from faulty cell production due to chromosome abnormalities that have developed.

As a result, I didn't understand how someone with AA would possibly later develop into MDS because they didn't have the cytogenic issues.
I understand a bit more, and I will continue to follow all the information that people add to your newly created thread.

Thanks again,
Janice

[Greg H]

Originally Posted by cheri

Hi Greg~so what the heck, I'm going back and camping in the rain some more....

What I find the most wearing is the Russian Roulette sensation, every day. And yet some people are much worse off than I am. Frustrating...

Cheri,

I hear you. It's the Russian Roulette that gets me up at 5:45 am when I really should be sleeping for a couple more hours. But I think the best solution for that is probably camping in the rain (or the sun or the snow).

I have a September camping trip that will likely be cancelled because my daughter just bought and new house and needs some help moving -- but discovering a new section of Nashville will kind of be like discovering a new bit of the salt marsh.

Shorter term, after I spend a little time on the lawnmower and call my doc to try to get some BMB results before the weekend, I'm probably going to plant some cabbages. That's almost as good as camping!

Hope you have fun, rain and all.

Greg

[Chirley]

Hi Greg,

had to jump in here. Have you planted cabbages before? How do you stop pests? We have a white moth problem here and no matter what we do we can't stop them (don't use chemicals). We've tried companion planting with everything from garlic to marigolds but no luck. Any hints?

Regards

[triumphe64]

Originally Posted by cme01

Hi Greg,

had to jump in here. Have you planted cabbages before? How do you stop pests? We have a white moth problem here and no matter what we do we can't stop them (don't use chemicals). We've tried companion planting with everything from garlic to marigolds but no luck. Any hints?

Regards

Wait until somebody does a google search on "cabbage" + "white moth". Won't THEY be surprised.

[Greg H]

Originally Posted by cme01

Have you planted cabbages before? How do you stop pests? We have a white moth problem here and no matter what we do we can't stop them (don't use chemicals). We've tried companion planting with everything from garlic to marigolds but no luck. Any hints?

Hey Chirley!

It seems like those white moths are worse some years than others. I don't use any chemicals. If it's a bad year for them, I just try to hand pick as many as possible. I recall reading about one guy who gave his five-year-old grandson a tennis racket and a nickel for every dead moth. This Spring I had no moth problem at all; it will be interesting to see how these Fall cabbages do in that regard.

Take care!

Greg

[cathybee1]

Did you get your BMB results before the weekend?

Chirley and Greg, my fav white moth remedy is crumbled up white eggshells to confuse the moths (tho I think those moths are smarter than that!).

Any more, I buy organic cabbage.

[mausmish]

Greg - any results yet? Is all ok? Karen

[Greg H]

Hi all!

Sorry to disappear; my daughter is visiting and the days have been pretty full. Plus, I wanted to wait until I got the full report on my latest bone marrow biopsy before writing it up.

Those results were, in fact, pretty interesting. Unfortunately, I don't have, at the moment, much in the way of advice from my doctors about what they mean in terms of future treatment.

The big news is that my Trisomy 8 has disappeared. Vanished. Poof!

This BMB included both the usual metaphase analysis, where they line all the Chromosomes up on a slide and take a look. I have an actual picture of this from an earlier BMB; and, sure enough, there are three copies of the Number 8 Chromosome.

I have a picture of the new one, too. Only two copies of Chromosome 8 in all 20 of the cells analyzed.

We also did FISH, the high-tech version of chromosomal analysis, where they use probes for specific abnormalities in a sample of 200 cells. No Trisomy 8.

Well, that's not exactly true. Like most lab tests, these FISH tests apparently have a reference range (though I haven't before gotten the detailed copy of my FISH that included that level of information). We tested for the chromosomes usually implicated in MDS: 5q, 7q, 8+,11q23, and 20q. Of the 200 cells analyzed, I had abnormal nuclei as follows 5q:2, 7q:1, 8+:2,11q23:0, and 20q:6. All of these were below their respective reference ranges, leading the lab to proclaim "a NORMAL result."

What is not NORMAL, however, is Chromosome 1. A duplication of the long arm of Chromosome 1 (dup1q:21-32) was the first abnormality spotted in my bone marrow, and it is still there. I had this issue in 9 of 20 cells in my first BMB, 8 of 20 in my second; and 9 of 20 in my third (which was when it was joined by Trisomy 8 in all of those same cells). This May, six months post-Campath, the Trisomy 8 had dropped to 3 of 20 cells, but the dup1 was found in 17 of those 20 cells. Yikes!

Now, in the metaphase analysis, we're back down to 8 dup1 cells. And, for the first time ever, we did FISH on Chromosome 1, and found it in 23.5% of the cells analyzed.

What does all this mean?

Beats me. I haven't yet talked with Dr. Matt Olnes or other folks at NIH about the results.

I have to think that the Trisomy 8 was, in fact, some sort of collateral damage resulting from my immune system attacking cells in my marrow. The Campath shut down the attack; and the Trisomy 8 gradually vanished.

But the dup1q:21-32 is still there. And none of these tests really tell us whether that population of messed up stem cells is getting bigger or smaller, because none have a sample that's really statistically significant -- or so the docs tell me.

Meanwhile, my transfusion interval has settled in at every other week, when it was every four weeks back in the Spring.

If we think there's some chance that the dup1 population is going to follow the Trisomy 8s and shrink, then I'll put up with every other week transfusions until my one year NIH follow-up in November. I'm curious to see what Dr. Olnes thinks about all this, and will definitely report back after I speak with him.

Take care!

Greg

[Greg H]

Hi All!

My recent BMB had some other oddities that I thought I'd relate, just in case anyone else has seen them and has any thoughts.

I have dysplasia in all three cell lines, which is consistent with past results.

There was some debate about my screening BMB at NIH, and Dr. Olnes classified me as RCUD (refractory cytopenia with unilineage dysplasia), arguing that I really only had significant dysplasia in my platelet line. But all the other pathologists have considered me RCMD, because I have weird megakaryocytes (platelet line), megabalstoid erythoids (red cell line), and hypogranular myeloid elements (white cell line). But the red cell and white cell problems tend to have words like "mild" and "slight" attached to them in the pathologist's report.

So, my dysplasia is more evident in my platelet line, but it's red cell transfusions that I need with increasing frequency -- go figure.

My blasts are "not increased."

I find it amusing that bone marrow pathologists use the word "increased" to mean "more than normal," and "decreased" to mean less than normal. So, when they say your iron stores are "increased," they don't mean that you have more than you did last time (which is the plain sense of the word), but rather that you have more than the typical amount of iron stores.

That kind of odd warping of language leads inevitably to a sentence like this from my BMB: "No increase in blasts is appreciated." The pathologist, of course, means she didn't see more than the typical number of blasts. But, I have to say, I do appreciate not having an increase in blasts.

Okay, enough picking on the poor pathologist.

Other oddities, none highlighted as significant:

• I have "scattered, small" CD-3 positive T-cells and CD-20 positive B-cells floating around in my marrow. I have no idea whether this means something, or is just a part of the bone marrow pathologist's travelogue.

• My core sample was 40% cellular and my clot sample was 30% cellular. These aren't low enough to be really hypocellular, but, as my transplant doc noted, most MDSers are hypercellular, so this is a distinctive characteristic of my marrow.

• No ringed sideroblasts.

• I have a mild diffuse increase in reticulin fibrosis.

• A reversed CD4:CD8 ratio, which the pathologist figures is a result of the Campath.

• Almost no plasma cells in the flow cytometry sample

• An "unusually high" hematogone proportion (2.5%). Reading on the web tells me these are lymphoid precursors. I'll bet these are an after-effect of the Campath, since it messed with my lymphocytes.

• A mild increase in my phenotypic promonocyte proportion. (Intensely CD64 positive cells showing at leas some HLA-DR expression without CD14). I have no idea what that means.

• "The sample viability is substantially lower than typically seen on analysis of bone marrow specimens studied in this laboratory; in this specimen the reduced viability's probably associated with increased apoptotic activity." This is a bit of a mystery to me, though I take it to mean I have bunches of blood cells dying before they mature. That's odd, given that the proportion of dysplastic cells is "mild" or "slight."

• The myeloid cells are almost exclusively hypogranular.

Much of this is probably not significant, but I hope to have the opportunity to have a conversation with Dr. Olnes about most of it, just so I understand what we're talking about.

If you have any insights, I'm all ears.

Take care!

Greg

[DanL]

greg,

always interesting to read your posts. the bmb results are always fun in their own twisted little way. the parts i find a little different are the cd 20 and the reduced cellularity. i am guessing that the campath may have something to do with the cellularity though. for cd 20 b cell populations rituxan is given when they are out of control......

Trisomy 8 reduction is pretty cool though as it can be stubborn.

Have you found that the absence or presence of certain language makes you think that each pathologist has a slightly different checklist?

[Greg H]

Hey Dan!

The thing that was striking about this particular BMB report was how much more of a narrative it was. The reports I got from Wake Forest had tons of numbers, most of them formatted so poorly as to be nearly unintelligible.

This one was almost all words. The Pathologist didn't even bother to list my blast percentage! But I preferred the narrative approach, even though I'm still not sure what's significant and what are just observations along the way.

I hope that Dr. Olnes can help me figure that one out.

Take Care!

Greg