Accepted into Campath Trial at NIH

[Lisa Z]

Hi Greg-

Wow...my mom had plurisy a number of years ago. She had to spend a good week in the hospital; but she is older! Re: Pentamidine..... hopefully you don't have PCP, but the more common phneumonia. I actuall just went off the pentamidine, as NIH took me off since my CD4 counts are above their threshold. But, I'm still going to stay on the Valtrex a while longer.... just to be sure.

Well, I certainly do hope that you get better with all the meds they have/will give you. Keep us posted.

Lisa Z.

[mausmish]

Greg,

I echo Lisa's sentiments and hope you have the garden variety pneumonia and not PCP! My brother was one of those PCP victims in New York in the 80's, and it has made me very paranoid about PCP. I think my prophylactic antibiotics may be the source of a lot of my GI issues but take them faithfully nonetheless. I was taking Bactrim but developed an allergy so am now on Dapsone. I also take the antiviral Valtrex. Sending lots of healing thoughts your way.

Karen

p.s. For Lisa: You've been on Pentamidine for two years?! My transplant doctor is planning to take me off Dapsone after six months. I wonder if that is too soon.

[Lisa Z]

The trial that both Greg and I are on is Campath @ NIH. The protocol calls for stopping antivirals after CD4 counts come back up to 200. Mine are aroudn 260 or 280. I feel OK stopping the Pentam, but don't feel comfortable yet stopping the Valtrex. I will meet w/my local dr. and decide. I have a feeling the Valtrex may be making my LDH counts go up though, and I'd like those to come back down to normal soon. So, we will decide in the next 4-6 weeks.

Happy spring to everyone.

[mausmish]

I've been on Acyclovir or Valtrex antivirals for 16 months and will probably continue indefinitely. I was more concerned about stopping the antibiotic (equivalent to your Pentam) after only six months when you took it for two years.

[Greg H]

Originally Posted by mausmish

Greg,

My brother was one of those PCP victims in New York in the 80's, and it has made me very paranoid about PCP.

Karen,

Those were trying times. I hadn't realized how important the early AIDS fight was in changing the way that medical researchers and pharma interact with patients until I read a chapter or two on that in Siddartha Mukherjee's fantastic book "The Emperor of All Maladies."

There's a direct line from the Act UP! AIDS activists and the breast cancer advocates who got Herceptin released to some patients before the results were all in.

Come to think of it, I haven't seen a review of that book on marrowforums -- I think I'll go write one!

I think Lisa Z is right that you want to be looking at your CD4 T-cell counts to decided about your prophylaxis for PCP. I don't know what my levels are right now, but I imagine they are still in the graveyard, since my absolute lymphocyte county hasn't budged in a month. Campath really knocks down the T-cells for a while. Maybe your heme can pull a CD4 count so you can be more (or less) comfortable about stopping the prophylaxsis.

Take care!

Greg

[Greg H]

Originally Posted by Lisa Z

Hi Greg-

Wow...my mom had plurisy a number of years ago. She had to spend a good week in the hospital; but she is older!

Hey Lisa!

I think the Pleurisy was a blessing in may case (though, if it comes back, I may not feel quite as charitable towards is) because it convinced me to go to the emergency room before this pneumonia really got rolling.

It is massively painful. My brother had an ordeal with it a year or so ago and they had him in hospital with a morphine drip.

Thanks,

Greg

[cathybee1]

Greg, I can't imagine what you've been going through. Thank goodness you got to an ER doc who knew what he was doing, and that the CT scan was ordered.

I'm sending big wishes your way that you have garden variety pneumonia.

Thanks for the catchup. It was indeed newsworthy.

We are also practicing patience re blood numbers at this end. We've had a discouraging month where the Hgb and other RBD numbers have been dropping faster than normal. We're waiting to see if the ceruloplasmin numbers will in fact improve as a result of the weekly IV copper infusions.

Bruce had a transfusion last week. Bruce actually was feeling better beforehand, probably because he recently had a stent implanted. It took a while discovering he had a blockage because every time Bruce would complain of tightness in his chest, the hematologist would say it was because Bruce wasn't getting enough oxygenated blood to his heart and needed a transfusion. If you're a hammer, everything looks like a nail or something like that.

[DanL]

Greg,

I hope that you knock this thing out quickly.

Last year when I was on prednisone and imuran (back when we thought I had ITP) I had a bout with PCP which was pretty nasty. Symptoms were uneven - great weakness in the legs, broke a sweat from nothing, only had a fever in the early morning which was easily killed by a couple of Tylenol. Lungs sounded good and looked clear in CT and X-Ray. Bronchoscopy found the monsters causing it. Spent 3 days in the hospital up to the bronch, took 2 days of Bactrim and felt improvement within about 12 hours.

Get lots of rest and reasonable sunlight - both are good for the lungs.

[Greg H]

Originally Posted by cathybee1

If you're a hammer, everything looks like a nail or something like that.

Catherine,

Ain't that the truth! A conversation with most transplanters will convince you of that. But it's something we're all probably guilty of.

I'm sorry to hear about Bruce's falling numbers. How frequent are his transfusions now?

I am very interested to hear how the IV copper works out; I've been following closely your back and forth with Chirley on that score. I figure I'll have mine checked again in six months or so -- which reminds me I need to get a copy of the report from the last almost normal lab test.

I hope it is as lovely out there as it is here; we are in the midst of the most beautiful part of Spring, with the dogwoods, redbuds, and azaleas in full bloom. My sugar snap peas are a foot high now, so, it won't be long . . .

Take care!

Greg

[Greg H]

Originally Posted by DanL

Last year when I was on prednisone and imuran (back when we thought I had ITP) I had a bout with PCP which was pretty nasty. Symptoms were uneven - great weakness in the legs, broke a sweat from nothing, only had a fever in the early morning which was easily killed by a couple of Tylenol. Lungs sounded good and looked clear in CT and X-Ray. Bronchoscopy found the monsters causing it. Spent 3 days in the hospital up to the bronch, took 2 days of Bactrim and felt improvement within about 12 hours.

Hey Dan!

I really appreciate that detail; I'm feeling great today, so I hope the doxycycline is working. But, base don your report, I'll know what to look for.

If your sig is up-to-date, it sounds like you are hanging in there. Are you pretty much watch-and-wait at this point?

Take care!

Greg

[DanL]

Greg,

Glad to hear you are already getting better. That is great news.

Thank you for the reminder on the autosignature. There have been some changes to my situation, but I spend a lot of time in an alternate universe and forget to make updates.

My December BMB showed no additional genetic changes, but increased atypia in the megakaryocytes, no increase in blasts. I also developed 5%ringed sideroblasts and some marrow fibrosis. Results were confirmed by UCLA medical and the current diagnosis falls in the grey zone of MDS with fibrosis or PMF with MDS features or more commonly overlapping MDS/MPD. I am still feeling pretty darned good, free of transfusions, occasionally turn green and then purple, and continue on the quest to identify what the best treatment options really are.

I have a call into a couple of different places, but nobody really seems to know where to go with the overlap - do they treat MDS or MPD? Treating both doesn't seem to be in the works just yet from the clinical trial standpoint.

We may be heading down the transplant path although I would like to hold off for a few years if possible.

Thank you for asking.

[cathybee1]

Hey Greg,

We are still waiting to find out the results of blood work from last week to find out if any of the copper or other numbers have come up. Bruce has had 3 copper injections so far, and a few more of the other things he was low in. The family doc is ordering those tests, the hematologist has only been running bloodwork on his rbc/wbc and ferritin. We tried to get them to coordinate so Bruce only had to be stuck once, but decided it was just too frustrating.

Bruce officially was taken off the Aranesp yesterday; the hematologist said it wasn't doing anything.

We're taking a little break from the hematologist for a month while we regroup -- Bruce will be seen by the family doc in the meantime.

He was getting by on his transfusions at about 2-1/2 months, this last one was at about 7 weeks.

Re spring reaching us...we only have daffodils up so far, we're a bit later being in the mountains, the buds on the fruit trees are just starting to swell. The weather has been reliably rainy, your spring sounds just lovely.

Hope you are feeling well, and that your bees are doing their jobs.

[Greg H]

Originally Posted by DanL

I have a call into a couple of different places, but nobody really seems to know where to go with the overlap - do they treat MDS or MPD? Treating both doesn't seem to be in the works just yet from the clinical trial standpoint.

We may be heading down the transplant path although I would like to hold off for a few years if possible.

Hey Dan!

I hadn't thought about the fact that the trial-ists are often looking for a fairly "clean" diagnosis to fit their criteria. It makes sense, but it certainly does reduce the options for someone with a messy diagnosis.

We share an interest in holding off transplant for a while. I imagine I'll get there at some point -- and the transplant docs would like it to be sooner rather than later -- but I've got too much else to do right now.

Take care!

Greg

[Greg H]

Originally Posted by cathybee1

Bruce officially was taken off the Aranesp yesterday; the hematologist said it wasn't doing anything.

We're taking a little break from the hematologist for a month while we regroup -- Bruce will be seen by the family doc in the meantime.

He was getting by on his transfusions at about 2-1/2 months, this last one was at about 7 weeks.

Thanks for the update, Catherine.

I'm sorry to hear about the shorter transfusion interval, but glad you got the IV copper set up. I'm hoping it will help.

Take care!

Greg

[Greg H]

The thing about cancer — and particularly a bone marrow failure disease — is the uncertainty.

I feel fine most of the time, except maybe the last week before I need a red blood cell transfusion, when I'm likely to be more fatigued and the pounding in my ears at night gets a bit louder. Those monthly transfusions are, in fact, about the only thing that reminds me I have cancer.

So it's not pain that mediates my disease, but lab reports. And the uncertainty about what the next report will reveal — and the anxiety of waiting — are the primary symptoms of my MDS.

I visited the National Institutes of Health last Tuesday for the six-month follow-up of the clinical trial in which I am enrolled. So far, I am a non-responder to Campath, meaning the numbers on various lab tests have failed to hit the marks that would qualify as a response.

Yet, as my fellow, the upbeat Dr. Dumitriu, amply demonstrated with his line graphs, all the key measurements of my blood counts — reticulocytes, red blood cells, white blood cells, platelets — are moving ever so slowly in the right direction. So, though he is not "enthusiastic" about my response, he is "optimistic" that I am headed in the right direction. A number of other folks in the Campath trial have been late bloomers, showing this same painfully slow improvement before achieving a durable response at the nine or twelve month mark.

Dr. Matt Olnes, the principal investigator on the trial, echoed Dumitriu's optimism and explained that this six month mark is a crossroads of sort: NIH could remove me from the trial, or I could remove myself. Neither of us proved ready for that. They believe I am a late bloomer; and I, hoping they are right, am very aware that there is, in fact, no particularly good alternative therapy for someone with my disease characteristics: lower-risk MDS with subnormal but not dangerously low platelet and white blood cell counts.

The other drugs I could try -- Vidaza, Dacogen, and Revlimid -- have all generated proven responses in only twenty-five percent or fewer lower-risk patients. All are "marrow-toxic" and risk lowering my counts into the danger zone before they start to help -- if they start to help. A stem cell transplant is also still too risky given my disease profile.

Dr. Olnes pointed out something that I had lost sight of: while I haven't hit the marks to qualify as a responder, all my counts are better than they were before I started the trial, except for my more frequent need for red blood cell transfusions.

So, that's the plan: we keep transfusing monthly as needed, and we wait.

Unless . . .

And that's where the uncertainty kicks back in. My six-month follow-up included a bone marrow biopsy, my first in nine months. And those results, if we found some new chromosomal abnormality, like a deletion of the long-arm of chromosome 5 or a missing chromosome 7, could radically alter our calculations, for better or for worse. And it's likely to be ten days before we know.

Meanwhile, I will feel just fine -- and, in an odd way, fortunate. Because, if dealing with uncertainty is the worst symptom of my disease, I am so much luckier than so many other folks with cancer.

[Greg H]

My last bone marrow biopsy at NIH -- mostly because I decided to take a very long walk afterwards -- left me lying in the floor of a BBQ joint, having fainted from the pain in my behind.

This time was not quite that exciting, but it had it's moments.

I have an NIH coffee cup at home that says "NIH: Big Place, Lots of Smart People." And that's right. These folks are amazing. But it's also a teaching facility. And that means, likely as not, your bone marrow biopsy is going to be performed by a fellow who has done a dozen or so, not a few hundred.

My fellow this time was a very pleasant doc from the National Cancer Institute on a rotation through the National Heart Lung and Blood Institute. He had nine biopsies scheduled for the day; I was number three.

I have hard bones. The doc painted my behind blue with a cleanser, poked at my pelvis to find the right spot, hit me with plenty of lidocaine, and bored into my muscle. Then he decided he didn't much like the spot he hit, so he pulled the needle out and bored into a new spot.

He made it through the bone, pulled out the liquid portion of the biopsy, and then went for the solid sample of the inner marrow. No luck. He drilled and drilled and the needle didn't gain any depth. More drilling. More pressure. No progress. More drilling. No luck.

Finally, he called a more experienced doc. And then drilled some more.

Once the more experienced doc arrived, he poked around on my behind, explaining to the fellow that you have to hit the thicker ridge around the top of the pelvic bone, because that's where the marrow is thick enough to get a good sample. Otherwise, it's just bone.

He demonstrated, they got the sample, and I got three holes in my behind for the price of one.

Big place, lots of smart people. That is very, very true.

But even smart people have to learn the ropes. And, sometimes, that's the price you pay for getting the best care in the world.

[Lisa Z]

Hi Greg-

Sounds like perhaps you had the same fellow do your last biospy as I did in February. It wasn't pretty. After the aspirate, he couldn't get the bone sample. Had to go in another spot, and drilled and drilled and finally got a sample smaller than the required size. Ultimately, he went with that, saying "for a 1 year followup, this is good enough". My husband, who was in the room told me the dr. was sweating bullets! That explains his periodic stoppage, so he could wipe his brow a number of times. It was when he lowered my bed, so he could put more force on the bone, that I knew I was in trouble. It was my worst one ever! In retrospect, I should have asked him to have someone come in to assist.

In regard to your status, hopefully you are just a slow responder. If you are at 6 months, give it a bit longer. I truly don't think I responded till 6 months, so you may just be a slow poke; most of the people on the trial have responded, so hang in there!!!

Lisa

[mausmish]

Hi Greg,

Your bmb sounds awful! I've had 6 and am coming up on number 7 in a couple of weeks. Even though I've been at teaching hospitals (Johns Hopkins and University of Maryland), my bmb's are done by the nurse practitioners who do them by the 100s and are very good at it. My hematologist did my first in his office and he wasn't quite as good but way better than I was expecting nonetheless.

I am really hoping you are just a slow responder on the trial. It seems like you'e been doing so well, and I've read a lot of posts here in the forums from people who took longer than six months to respond to atg. If it doesn't work out, try to remember that the other alternatives can be a lot less scary than they sound, and improvements in treatments are happening steadily. Sending you lots of positive, healing thoughts.

Karen

[Greg H]

Hey Lisa!

Definitely sounds like the same scenario, if not the same guy. He made exactly the same mistake with me, which I got to hear the senior doc explain to him.

Basically, they can get the aspirate anywhere in the pelvic bone, but they have to hit the right spot for the marrow sample.

Take care!

Greg

[Greg H]

Originally Posted by mausmish

Hi Greg,
It seems like you'e been doing so well, and I've read a lot of posts here in the forums from people who took longer than six months to respond to atg. If it doesn't work out, try to remember that the other alternatives can be a lot less scary than they sound, and improvements in treatments are happening steadily. Sending you lots of positive, healing thoughts.

Thanks Karen!

I'm counting on the slow response scenario, based on what I've read around here.

My transplant doc, who's English is a bit eccentric, once wrote me that she hoped my "apprehension of transplant" didn't prevent me from pursuing my best chance for cure.

Frankly, even if the immunosuppression works, I figure there's very likely a transplant in my future. But it's not something I have time to do right now if it can be avoided for a couple of years, and, looking at the odds, it doesn't make sense with my profile. On the other hand, if they find a bunch o' blasts or some monosomy 7 in my marrow, those odds will change.

I was diagnosed 14 months ago, and, frankly, I'm in much better shape physically than I was then. I've dropped 30-40 pounds, I'm eating better, and I'm exercising more regularly. I kind of think of myself as being in training for a transplant a few years from now, and I want to be in the best possible shape when and if it happens.

I hope things continue to go well for you. Things have been nuts at work and at home, so I've been a little scarce around here lately.

Take care!

Greg

P.S. You're right about the nurse practitioners. Best bone marrows I've had.

[Greg H]

I learned two other interesting things during my six-month follow-up visit to NIH: That 50 units of packed red blood cells is the point at which NIH docs start to worry about iron overload, and that folks who live in Alaska fly over the North Pole to get to the beach.

During my three-month follow-up at NIH in February, I asked about iron overload, noting that a recent set of labs drawn by my family doc had pegged my ferritin level at a pretty substantial 1600 (400 is the high end of normal). Dr. Matt Olnes expressed little concern, noting that, if I respond to the Campath treatment, I'll use up the excess iron making new red blood cells.

It was clear to me from our conversation that he wasn't really aware of just how many transfusions I have had. So I went into my six month appointment armed with a record of my transfusions: 16 visits, 33 units total. That caught the eye of both my fellow, Dr. Dumitriu, and Dr. Olnes, who immediately began talking about options for iron chelation down the road, to get rid of the excess iron.

Their rule of thumb appeared to be that chelation may be a good idea after 50 total units of packed red cells. I mentioned that my local hematologist, Dr. Wall, had expressed some skepticism about chelation, given the lack of evidence that it contributes to overall survival in MDS -- not to mention the expense of the treatment. Dr Olnes agreed.

On the other hand, I noted that a transplant may well be someplace in my future, and I have read that excess iron can be a complicating factor in transplant. Dr. Olnes said the tipping point on iron vis-a-vis transplant appears to be a ferritin level of 3000 or above.

We decided to add ferritin to my blood work -- and here's something interesting. My ferritin level was 1623 back in February. The results from Tuesday were 1590, despite the fact that I have had eight units of RBCs since then. Dr. Dumitriu said the rule of thumb was a 100 point increase in ferritin for every unit, which means I should be at 2400.

What's up? First, it was a different lab doing the test, and I have found labs differ significantly. But the other intriguing possibility involves wheatgrass. Based on a tip I found on Marrowforums, I've been taking wheatgrass tablets since February: six 500 mg tablets per day. I decided on the dose based on research that used juice from nine grams of fresh wheatgrass to lower ferritin levels. I figured that three grams of the whole plant dried should have at least as much oomph as nine grams juiced.

I have another ferritin check at my local lab this week, which should give me results to compare from the same lab. I'll report back on what I find out. Meanwhile, I've ordered more wheatgrass.

Dr. Olnes leaving NIH

I know I got you to read all that wheatgrass stuff only because you wanted to learn about going to the beach via the North Pole.

I learned during Tuesday's visit to NIH that Dr. Matt Olnes, the Principal Investigator on the Campath trial, is leaving NIH. He's been asked to set up a clinical trials program on his home turf of Anchorage, Alaska.

Dr. Phillip Scheinberg will be taking over the Campath responsibilities. He's a noted aplastic anemia doc and has plenty of experience with immunosuppression and Campath.

Dr. Olnes said he would be keeping touch with the Campath trial for MDS on a volunteer basis. The recent death of Dr. Elaine Sloand, plus the departure of Dr. Olnes would seem to knock a bit of a hole in NIH's current work on immunosuppression in MDS, but I imagine they will be looking for folks to pick up that thread -- I hope so in any case.

And that North Pole beach stuff? When we kidded Dr. Olnes that he'd be too far away from the beach, he explained that when folks in Alaska want to hit the beach, they hop a plane in a route that takes them over the pole to Hawaii. Tough, but I guess someone has to do it.

[Chirley]

Hi Greg,

Also don't forget that ferritin is an inflammatory marker and may vary from time to time due to illness or infection.

My ferritin jumped from 3,000 to over 5,000 in a couple of weeks with just 2 units of blood. Turns out I had a urinary tract infection and after that was treated the ferritin returned to 3,240. It also varies depending on how much copper and zinc you have as well.

I told my doctor I wanted to start drinking wheatgrass smoothies. He told me I could if I wanted but that it tasted like #*$#. He thought chelation or venesection would be faster and less distasteful. Bear in mind, my doctor is a very health conscious vegan so I was surprised at his response.

Regards

[Marlene]

John too would see jumps up to to 2000 points at times. So it's less accurate when it's over 1000. Anything can effect the reading. Even the blood draw can cause it to spike.

When John was first diagnosed, his HGB was 5.5 and his FE was 392. So I wouldn't count on new blood production to reduce your iron too much.

[Greg H]

Hi Chirley & Marlene!

Thanks for that info on ferritin spikes; highly interesting. I had read that ferritin was a pretty lousy measure of iron overload, used only because there isn't a better one, but I didn't realize it could jump up and down so dramatically.

I hope to have a ferritin reading taken by my usual lab on Tuesday, so it will be interesting to compare to the NIH number. I'll be interested to see whether they are in the same ballpark.

I'll have to read up on this ferritin stuff and iron overload. There seems to be a lot of skepticism about chelation in MDS. I wonder if, in part, this is because of the older profile of most MDS patients. If you're in your mid-50s, looking at lots and lots of transfusions in your future, that might give the docs a different perspective than if your a patient in your 80s looking at the same picture. I'm not sure it should make a difference, but it might.

Time to hit the medical journals!

Take Care!

Greg

[Greg H]

Originally Posted by cme01

I told my doctor I wanted to start drinking wheatgrass smoothies. He told me I could if I wanted but that it tasted like #*$#. He thought chelation or venesection would be faster and less distasteful. Bear in mind, my doctor is a very health conscious vegan so I was surprised at his response.

Chirley,

On the taste of wheatgrass, I find it tastes like grass. I've heard the fresh juice is much stronger-tasting than the powder or pills. I've been taking the pills, chewing them up a little bit, and washing them down with water or tea.

The taste isn't exactly pleasant, but it's definitely tolerable. The first couple of doses have a significant purgative effect, in my experience, so I recommend starting out slowly and working up to the full dose.

I've just ordered some powder from a different company, with the idea I'll use it in a smoothie.

Take care!

Greg