Accepted into Campath Trial at NIH

[Greg H]

Originally Posted by cathybee1

The hematologists with whom we've discussed Bruce's low copper levels weren't too concerned about it being in the 60's because it "wasn't that low." The family doc believes that it is still WAY low -- that to really help in getting the bone marrow going, it needs to be at the middle, not the bottom, of the range. So he upped Bruce's copper supplementation.

Catherine,

Thanks much for this update. I had one copper test at NIH that the doc told me was "normal," though I haven't yet see those labs, so I don't know what the number was. Ironically, that was after they had taken me off copper for a week or so.

But I left with orders to continue my 6 mg/day of chelated copper. The NIH docs were pretty skeptical of the advice I got from Wake Forest to add some zinc to the mix, giving more weight to the evidence that zinc inhibits copper absorption.

I should ask my local doc to test copper again -- maybe after the first of the year.

I like your local doc's theory: Just because you copper level is barely normal doesn't mean it's optimal. How much copper is Bruce taking now? Is he doing zinc as well?

Thanks for that report.

Hope you and Bruce are having a great holiday season!

Greg

[Chirley]

Hi,

I have also got low copper. When I was first tested my level was 0.5 normal range being 13 to 25. I have been giving myself Copper Histidine 3mg/ml injections into my stomach twice a day for the last 5 weeks and the level has just returned to normal at 13.3.

My CBC has returned to normal for the first time in 7 years (except for Lymphs which are still below 0.5) and I have not had to have a transfusion for 4 weeks. Unfortunately it looks as if I have a metabolic disorder which causes copper/iron interaction problems. As a result I excrete large amounts of copper in my urine. The Professor of metabolic medicine that I see thinks that oral copper will not be an option for me although we are going to do a trial of oral Copper Sulfate solution at 2mls 3 times a day with a dosage of 1mg/ml. The needles are a bit painful and leave red sore patches for a few days afterwards and I'm keeping my fingers crossed that the oral copper will work. They are also a bit expensive at $120 a week which I have to pay for myself. They're not government subsidised and my health insurance won't help either. I'm the only adult in Australia on these needles and that's why they can't be imported from the USA.

[Chirley]

Sorry, I was interrupted before I was finished.

I'm going to have another BMB in a few weeks time to see if the MDS has gone. It's complicated by having had 5 cycles of Vidaza and we don't know if I do really have MDS which is in remission due to the Vidaza or whether all the problems were caused by the copper deficiency.

Sorry to have hijacked your thread but the topic seemed appropriate.

All the best.

Chirley

[cathybee1]

Chirley, this is wonderful news about your CBC...and bad news about your reaction to the injections and your metabolic disorder.

Here, in the U.S. we had to pitch a fit to get the hematologist to test Bruce's copper initially -- the doc said no one except for patients on IV feeding have low copper levels. It was actually Greg's post that got us wondering...if not for these forums, we would never have known a copper deficiency was even a possibility.

Greg, Bruce is now taking the chelated bisgyclinate copper (Blue Bonnet brand) 7 mg/day, no supplemental zinc other than what is in a multi vitamin.

Another interesting aside.. when the family doc was ordering the follow up tests for copper deficiency, he also ordered a Reticulocyte test, which isn't normally done as part of a CBC. Normal range is .5 - 3.00, Bruce's was .077, which was part of the family doc's explanation of why Bruce needed to add more copper. I wasn't at that appointment, and don't really understand the reasoning -- but thought it was worth sharing.

[Birgitta-A]

Hi Chirley,
Wonderful with your CBC! Very interesting with copper defiency. Marlene often posts about copper.

Your MDS has never been typical and now you perhaps don't have MDS at all! Too bad if you got Vidaza for a disease that you don't have and eventually JC virus with neurological symptoms as an adverse reaction.

Hope your immune system has improved and manage to fight the JC virus!
Kind regards
Birgitta-A

[Greg H]

Originally Posted by cathybee1

Another interesting aside.. when the family doc was ordering the follow up tests for copper deficiency, he also ordered a Reticulocyte test, which isn't normally done as part of a CBC. Normal range is .5 - 3.00, Bruce's was .077, which was part of the family doc's explanation of why Bruce needed to add more copper. I wasn't at that appointment, and don't really understand the reasoning -- but thought it was worth sharing.

Hey Catherine!

As I understand it, reticulocytes are immature red blood cells. They are released from the marrow when they are a day from being mature. The NIH folks always want a "retic" report along with my CBCs. A low reticulocyte count suggests low RBC production and a high count means the marrow is cranking out RBCs. So Bruce's doc must have figured the low count was an indication that something's impeding production -- like still not enough copper.

Take Care!

Greg

[Greg H]

Originally Posted by cme01

Hi,
I have also got low copper. When I was first tested my level was 0.5 normal range being 13 to 25. I have been giving myself Copper Histidine 3mg/ml injections into my stomach twice a day for the last 5 weeks and the level has just returned to normal at 13.3. My CBC has returned to normal for the first time in 7 years (except for Lymphs which are still below 0.5) and I have not had to have a transfusion for 4 weeks. Unfortunately it looks as if I have a metabolic disorder which causes copper/iron interaction problems. As a result I excrete large amounts of copper in my urine. The Professor of metabolic medicine that I see thinks that oral copper will not be an option for me although we are going to do a trial of oral Copper Sulfate solution at 2mls 3 times a day with a dosage of 1mg/ml.

Hey Chirley!

Thanks for letting us know about this. I've never run across anything about this particular metabolic disorder. Do you know what it's called. Most of what I've read on copper deficiency mentions only gastric surgery as a cause. So I'd be interested in knowing more about this alternative explanation.

I hope the copper sulfate works for you -- the shots sound both painful and expensive. Copper deficiency doesn't seem to be something with which the physicians I've encountered are very familiar.

Take Care!

Greg

[Chirley]

Hi,

I don't know the name of the metabolic problem that I've got. I'm still being treated by my haematologist who consults with my neurologist who is advised by the Prof of metabolic medicine. This means that everything I'm told is third hand.

I know I have something called human swayback (I hate that name) which is myelopathy (demyelination) caused by copper deficiency and I can no longer walk unaided. I have also been told that I probably have nephrotic syndrome because 24 hour urine tests not only show large amounts of copper but also large amounts of protein as well. Apart from telling me about it, nothing else has been done about it.

My neurologist tells me that the Prof says I would have had this all my life and that I'm extremely lucky not to have problems when I was younger. He describes it as an adult version of Menkes Disease and he actually got 3 other neurologists and a medical student to come and examine me and ask me questions because what I have is extremely rare and is the only case they have ever seen. I was told that I'm going to be cited in a medical journal article. I asked for royalties, ha,ha.

Whatever this disorder is it's supposed to cause other problems as well. I've been told that it's the reason I've lost all body hair, why my hair has gone from very straight to fuzzy. It causes skin problems i.e. grey skin, wrinkles, slow healing. It causes joint/tendon pain. It can cause vein/artery problems like aneurisms etc and it also causes bone problems. In fact I've been told that I'm at extreme risk of having a pathological fracture with the slightest fall or bump.

All in all, I think I'd almost prefer to have straight out MDS. At least there are other people out there with MDS and I have felt supported and comforted by the people on this forum. I don't know my long term prognosis and I'm feeling very alone.

I probably won't be seeing the Prof of MM until March (at the Childrens' Hospital - how embarrassing) and will get a chance to ask more questions then.

Hope you keep on responding to the Campath. Good luck.


Chirley

[Birgitta-A]

Hi Chirley,
Then I understand. You have myelopathy caused by copper deficency and not by JC virus - 90 % of us have JC virus but our immunesystem usually can fight that virus.

Hope the treatment with copper will have some effect!
Kind regards
Birgitta-A

[Marlene]

There is also an important relationship of copper to zinc. I will see if I can find the name of the test John had to check the copper/zinc ratio. He actually had conflicting test results which no one knew what to make of it. One said he was low on zinc and the other said he was fine. If my memory is correct, too much zinc can also cause you to lose copper. You need both zinc and copper. Zinc supports your immune system. I too agree, low normals are suspect. If we only knew what our nutritional status was when we were at optimal health, we could manage our health better through nutrition. This is also true for hormone levels, especially for the thyroid since so many people have symptoms of low thyroid but continue to have test results in the normal range. The same is true for B12. Many docs think a low normal on a B12 serum test is ok when this test is not definitive and further exploration is needed.

I'll see if I can find the info the copper and post it.

[Marlene]

John had his zinc/copper ratio tested with Great Plains Labs. I took a look a the results from 3 years ago and they show his copper is normal, zinc was low and therefore the ratio was out of balance. Their comments on the low zinc stated low zinc may be associated with impaired immune system function, among other things. They then commented on the High copper to zinc ratio and the following stood out for me: High copper zinc ratio is common in cancer and hemochromatosis. At this time, John's iron was still high.

However, the conflicting result was the one that examined his red blood cell elements. Within the red cell itself, the zinc and copper were in the normal range, but in this case, the copper was low normal and zinc was just above the mid range of normal. This test is checking to see if the cells have sufficient elements needed for important functions of the blood cell.

http://www.greatplainslaboratory.com...nc_profile.asp

Copper & MDS
http://www.haematologica.org/cgi/con...ull/92/10/1429

Copper
http://www.drkaslow.com/html/zinc-co...mbalances.html

It's all very delicate balance.

[cathybee1]

Marlene -- thanks so much for digging up this information on the lab and the testing. We will talk to Bruce's doctor about it.

[Marlene]

You're welcome. You may want to look at some of the other test available with Great Plains Labs. John did the Organic Acid urine test and it identified some nutritional deficiencies which we were then able to target better. I really feel the iron overload, along with the Exjade, complicated his recovery. I wish we could have gotten the iron off quicker but his body could not tolerate normal doses of either Exjade or Desferral.

[Greg H]

The schedule that the folks at NIH laid out for follow-up of the Campath trial calls for weekly CBCs, reticulocyte counts, and blood chemistries. The prudence of that schedule was proven when my hematologist's triage nurse tracked me down this afternoon, urging me to go to the hospital for a type and cross-match, because my Hgb based on this morning's blood draw was 6.2.

In other words, in eight days, I ran all the way through two units of packed red blood cells blood transfused at NIH last Tuesday.

My local doc consulted with Dr. Matt Olnes at NIH, and they agreed that my blood chemistries (LDH and bilirubin) "are not consistent with hemolysis." Hemolysis is the breakdown of red blood cells, and, if that were occurring, it would explain the rapid drop in Hgb.

Instead, Dr. Olnes wrote me in an email: "This appears to be a bit of a delayed suppression of your counts from treatment that will require supportive care and should improve over the next few weeks."

My neutrophil count is also down -- to 500 -- so the folks at NIH are sending me a package of ciprofloxacin to help prevent bacterial and fungal infections.

So, tomorrow, I'll be relaxing in the same-day surgery unit of my local hospital getting two -- or maybe three -- units of PBRCs. So my tank will be full in advance of Christmas festivities.

I don't have the full lab report yet, so I can't report on what my platelets or lymphocytes are up to right now. My reticulocytes (baby red blood cells) are at 31, which is no great shakes but is in the normal range -- and a lot better than the 15 I had last week at NIH.

"Hang in there," Dr. Olnes wrote. And I am.

[riccd2001]

Over the last few years I've found that not all PRBC units are the "same." Besides the date of blood donation and its expiration date, there is also the variation of actual volume amount which for me has ranged from 238ml to 343ml (a volume difference of 44 per cent is considerable IMO). Just something to consider when an unexpected drop in Hgb comes along.

[cathybee1]

Oh, Greg, this Hgb drop is "worrisome." (one of our doctor's favorite words)

Even so, I hope you are able to relax tomorrow during your recharge. I think I remember you telling someone not too long ago that most of the treatments for bone marrow diseases make you worse before they make you better. Dr. Olnes sounds like a great guy, it doesn't seem like he would steer you wrong about what he thinks is going on.

[Greg H]

Originally Posted by riccd2001

Over the last few years I've found that not all PRBC units are the "same." Besides the date of blood donation and its expiration date, there is also the variation of actual volume amount which for me has ranged from 238ml to 343ml (a volume difference of 44 per cent is considerable IMO). Just something to consider when an unexpected drop in Hgb comes along.

Hey Ric!

I have read about that elsewhere on Marrowforums. Oddly, I can't ever seem to find a volume on the bags from our local blood bank. They do have expiration dates, however. One of the units I received at NIH was a week from expiring; the other was a month from expiring.

Take Care!

Greg

[Greg H]

Originally Posted by cathybee1

Oh, Greg, this Hgb drop is "worrisome." (one of our doctor's favorite words)

Hey Catherine!

Worrisome -- I like that. I can almost see your doc's brow knitting.

Dr. Olnes is a great guy and a straight-shooter. He was quite upbeat in his note, aside from expressing regrets that I'm having to deal with crappy counts. But he seems quite confident things will turn around in a few weeks, so I'm going to share his optimism and not get overly excited about it.

Happy Christmas!

Greg

[Greg H]

After my three units of packed red cells last Thursday, my hemoglobin was still way up in the 9s today when I visited my local hematologist's office for a CBC -- 9.6 to be exact. Platelets were also significantly improved, up to 78 from a lousy 46 last Wednesday. (My platelets are all over the map lately!)

My Neutrophils, which had dropped to 500, bounced back to 600. A bottle of Ciprofloxacin arrived from NIH today, which Dr. Olnes prescribed because of the ANC drop to 500, so I'll go ahead and take that until the doc says otherwise.

I am getting back a few lymphocytes -- about 100 at this point. I asked Dr. Olnes whether this is to be expected, and he confirmed that it is part of the normal course of the treatment with B cells, Natural Killer Cells, and some CD8+ T-cells coming back by the three-month follow-up (which will be in early February). But the CD4+ T-cells continue to be suppressed for a good bit longer.

As I understand it, these CD4 cells don't actually do a lot of cell killing themselves. They are more like scouts that tell the CD8+ T-cells what intruder (or what Trisomy 8 blood stem cell) to beat up on next. Knocking down the CD4s is key to the Campath therapy.

I have an appointment with my local hematologist on Thursday; it will be nice to see what he's thinking about all this.

[lindy]

Hi Greg,

Nice to read that your hemoglobin & platelets are up.
Hoping you have a great outcome from this therapy soon.
Best wishes.

[cathybee1]

Greg, that's a great New Year's present...

[Greg H]

Thanks Lindy & Catherine!

We'll hope for more improvement next CBC -- either this Thursday or next Tuesday (not sure which).

Happy New Year!

Greg

[cathybee1]

By the by, Greg, how are your copper levels doing.

Bruce's are back down, in the mid 60's. Interesting.

[Greg H]

Hey Catherine!

I haven't had them checked since NIH, when I was told they were back in the normal range -- but I didn't manage to get a copy of those labs. I'm planning to request a major data dump from them next week. Once I have that, I'll persuade my local doc to check them again.

Thanks for asking! Happy New Year!

Greg

[Greg H]

Tuesday's results at the lab were a mixed bag. Hemoglobin was at 8.1, better than the 6's I've been turning in, but lower than I had hoped. More about that later.

Platelets were down from 78 to 60, but that's a heck of a lot better than the 42 from a couple of weeks ago. My platelets are up and down like a roller coaster, giving me the suspicion that things aren't all sorted out yet in the platelet factory. Still, I'm not going to complain about a 60.

On the bright side of road, my absolute neutrophils are up to 760, compared to 600 a week ago and 500 two weeks ago. I am looking forward to the continuation of this trend, which will eventually get me off the twice daily 500 mg dose of ciprofloxacin. Fortunately, I have had none of the more dramatic digestive complaints associated with cipro -- no nausea, etc. But it does seem to make my stomach a bit queasy after meal time, and it messes mightily with my consumption of butter, cheese, and cream, which is fairly essential to my breakfast and lunch. Calcium interferes with the absorption of ciprofloxacin.

Lymphocytes are gradually coming back, up to 190, versus 100 last week and the week before.

Now, back to the hemoglobin. I'm down to 8.1 eleven days after a triple unit transfusion right before Christmas. I'm very tolerant of low Hgb, so I could hang on for another week or so, getting a CBC on Tuesday and a transfusion toward the end of next week.

But, I've dropped 1.5 points in a week. If that pace keeps up, I'll be at 6.6 next Tuesday. That math got me thinking: If I'm going to wind up with more transfusions than I'd like for the next month or so, why not keep the Hgb in the 8's and 7's most of the time, where I'm more comfortable, instead of in the 7's and 6's, where I get serious blood pounding in the ears and wake up feeling like I've been punched in the face?

So today (Friday) I'm in the Same Day Surgery Center waiting for two units of PRBCs, hoping that will get my Hgb up in the mid to high 9's, and I'll feel energetic using my chainsaw next week to cut up the big oak tree that my neighbor has promised me for firewood.

Another bright spot in the labs, I think, is that my absolute reticulocyte count is up to 77.4, smack dab in the middle of the normal range. Percentage-wise, we're looking at something between two and three percent of my red blood cells. If I've got my math right, that means my marrow is churning out enough baby red blood cells to replace my whole stock of RBCs in 30-50 days. If that production holds up, we could be on the way to making enough red blood cells to reduce my need for transfusions. At least, I'd like to hope that's what it means!

But reticulocytes are a bit of a mystery to me. Prior to being treated with Campath, my retic counts were almost always abnormally high. If that's the case, if my marrow was pushing out lots of baby red blood cells, why was I anemic? If any of you fellow marrowforums folks have figured out this reticulocyte thing, fill me in.

Take care!

Greg