Accepted into Campath Trial at NIH

[Susan L]

Hi - I think the pager or cell phone idea is genus!!! Is there a way to suggest it there? Really it makes all the sense. I am glad you are doing so well. How long will you be there? I read alittle on the MDS forum about your treatment and Dr Sloand. They are hoping it will be "the" treatment. I encouraged that there seems to be so much research going on for MDS. So many have never heard of our problem, and really we dont really look sick except for the occassional having to stop and catch a breath or the vertigo that goes with it. Keep the info coming - it really is enlightening. Take care

[Lisa Z]

I felt comfortable in my room I must say. But, I did take walks around the NIH center and outside as well. But, not for one minute did I plan on staying somewhere locally the 2nd week of the trial. I was staying right on the premises....... just in case. And, I will tell you, when we left for home on that final Friday, we didn't get out of there till 3 or 4 pm. We hit all kinds of nasty traffic going North on 95 on a Friday at that time. We finally stopped to eat and I told my husband, "we are either getting a hotel, or finding a different way home". But, when we stopped to eat, we were seated at a table in a very crowded restaurant; he went to the bathroom, and when he returned I was on my way to tears; I freaked out by being in such a busy restaurant, full of families with kids, sitting real close to us. We left immediately. You get so comfortable in your protected environment at the NIH, (and I had my own room), that being around crowds was scary for me. That being said, the next Monday, I did go back to work at my fairly large high school and became a germafobe. I still am and I don't care. I simply take care of myself and I don't care if others think I'm weird!

But,............. I think you are bored if you are really trying to figure out the logistics of the NIH building. Kind of funny actually. I spent some time down there and in the library area. I was quite comfortable with that. Yes, they do have comfy furniture down there. Also, upstairs, if you sit by the windows with the sun shinning in, also nice.

Anyway, I'm sure the rest of your time there will be boring from this point on. Boring is GOOD. So, have a good week #2. Happy Thanksgiving, and keep sharing with the rest of us!!

[Greg H]

Originally Posted by Susan L

Hi - I think the pager or cell phone idea is genus!!! Is there a way to suggest it there? Really it makes all the sense. I am glad you are doing so well. How long will you be there?

Hey Susan!

Makes sense to me, too. For any hospital really -- particularly when folks are there for an extended period of time and are ambulatory. We just need to tweak the hospital care model to make it a little more customer-focused.

I'll be here until November 26, if all goes well. It's 12 days altogether.

Take Care!

Greg

[Greg H]

Originally Posted by Lisa Z

. . . not for one minute did I plan on staying somewhere locally the 2nd week of the trial. I was staying right on the premises....... just in case. And, I will tell you, when we left for home on that final Friday, we didn't get out of there till 3 or 4 pm. We hit all kinds of nasty traffic going North on 95 on a Friday at that time. We finally stopped to eat and I told my husband, "we are either getting a hotel, or finding a different way home".

Hey Lisa!

I noticed in the protocol the option of doing the second week as an outpatient, but no one has mentioned that to me as a possibility, so far. I wouldn't mind, except that the local hotels are pretty expensive compared to free room and board at the Clinical Center. (The Marriott nearby even wants you to pay extra for wireless internet!)

Thanks for the note about your late departure. I'm concerned about that, since I"ll be getting out on "Black Friday." I'm hoping that means everyone will already be in the malls, as opposed to driving the highways, but I'm concerned we may wind up in a hotel Friday night instead of getting home to NC.

Take Care!

Greg

[Susan L]

Hi - I was thinking - I know it was 7 1/2 yrs ago that I was there, but the 2rd week that I had to be there they put me and my husband in an apartment that they owned. Really nice actually - Had everything you needed - towels sheets TV. We just had to buy food and a laundry was downstairs. It was a couple of blocks from the NIH. Near downtown Bethesda. The office was by the waiting room where we registered. Ask your social worker. It was awhile ago - but we had absolutely no money to stay anywhere. Continue the good work!!!

[Greg H]

Thanks Susan!

That sounds neat. At this point, it's just me, since my wife left on Friday, so I'll probably just hang in here. But it is neat to hear they have an alternative. I imagine there's a good bit of competition for the use of something like that, but I'll keep it in mind in case any of my visits turn into a more extended stay.

Thanks!

Greg

[Greg H]

0001jW by hankins.greg, on Flickr


Like Day 5, Day 6 of the NIH Campath trial is mostly about what is not happening:

No chills.
No shakes.
No fever.

Hgb is down from 8.2 to 7.7; platelets are steady at 30, lymphocytes are too low to count, and neutrophils are at 1.09.

I was scheduled for a two-unit transfusion of packed RBCs this morning, but, since I was expecting a visitor in the afternoon, Dr. Klotz agreed to put that off until tomorrow (Sunday).

More to come . . .

[cathybee1]

Hey, Greg, cool chart! Lymphocytes look as expected. But you still have some neutophils! And no fever, atta boy!

[Susan L]

Hi - The chart is really neat. Very talented. You may want to ask someone about the apartment. If you are by yourself I would stay at the NIH thou. I did have to come back a couple of times due to complications. Take care.

[Greg H]

Hey Catherine & Susan!

Thanks for the kind comments on the chart. I am without a doubt a true nerd, but I really like to graph my counts because it makes it easier to see how I'm doing over time.

For example, based on my chart that tracks all my CBCs since diagnosis, I know my platelets have been steadily creeping downwards. That was, in fact, one of the factors moving me towards doing this trial instead of continuing to watch and wait.

Take Care!

Greg

[Greg H]

On Day 7 of the NIH Campath trial, the fifth full 10 mg dose of Campath produced the now-expected and somewhat boring result of no chills, shakes, or fever.

The morning's blood draw, however, produced something quite a bit more interesting.


0001zl copy by hankins.greg, on Flickr

We were scheduled for two RBC transfusions today, based on a CBC from yesterday that showed hemoglobin at 7.7. And we expected this morning's 5:00 am blood draw to produce an Hgb result in the low sevens. Instead, we got a 7.8. Platelets were up from 30 to 34, and neutrophils from 1.09 to 1.41.

Both Dr. Klotz and I were ready to chalk these increases up to sampling error or some effect of drawing the blood through a PICC line. I got ready to sit for two hours of Campath and four hours of RBCs.

But, after Dr. Klotz met with his colleagues and the attending physician, Dr. Tisdale, the plan changed. Visiting my room with the team, Dr. Tisdale noted that a few folks have seen their blood production bounce back more quickly than is the norm after the initial assault from the Campath. That could be the case here, he said, and, given that I'm experiencing no significant distress from low hemoglobin, we might as well wait until tomorrow's CBC to make a decision.

He noted that tomorrow's tests will include a count of reticulocytes -- immature red blood cells that circulate in the peripheral blood for a day before turning into grown-up red cells. We measured 59,000 of those per microliter before the Campath; they were at 23,100 two days ago. If they are back up to pre-Campath levels, we'll have an inkling that my RBC factory is recovering from the onslaught of Campath and we might wait and see what happens.

Another consideration pointing in that direction, according to Dr. Tisdale, is the fact that any transfusion carries with it some risk. So avoiding them, if possible, is always better. To that point, one of the things I've discovered since coming to NIH is that I have picked up a new antibody to complicate blood procurement. I had already developed the anti-e antibody, and now I have anti-C as well. The NIH Transfusion Science department sent an official notification of the same to my home, complete with wallet card to present to my local oncologist's office and blood bank.

I am still going to treat today's uptick in the counts as a sampling error until confirmed by additional data, rather than getting my hopes up. And even if my production is struggling to get back up to its pre-Campath levels, those levels were no great shakes. The median time to response in this trial -- i.e., improvement in any blood line -- has been three months, so there's a ways to go before we know whether the Campath has worked.

But it sure would be nice to walk out of here not expecting to have significantly more frequent transfusions than when I walked in.

Note that they found a stray lymphocyte swimming around in today's sample. I reckon that's why we are doing this for ten days: we got to get 'em all!



Campath N&L by hankins.greg, on Flickr

[mausmish]

LOL Greg, from one true nerd to another, love your charts and graphs. I have all my CBC's plotted out since January and whip them out on my ipad to point out trends whenever I see my technophile hematologist. Also very happy to hear you're doing so well.

p.s. Thanks for the blood type trivia on my blog - that was something i was actually wondering about and kept forgetting to research for myself.

[Greg H]

We are now officially on the downhill side of the Campath trial, receiving dose 6 today and continuing to have no chills, shakes, or fever.

We did wind up going for two-unit RBC transfusion today after all. Although my counts continue to improve, hemoglobin was stuck at 7.6 and the reticulocytes managed only 20.3, which is less than the 23.1 they posted three days ago.

So I'm not making enough new red blood cells yet, but I am seeing improvement every day in my platelet count (warding off the need for a platelet transfusion) and in my neutrophil count (warding off the need for a second antibiotic and neutropenic diet).

Campath plus two units made for a very long day in the chair, so I celebrated my release at around 4:00 pm by doing laundry and shooting pool in the patient game room (If you happen to come here, bring along with you one of those handy little kits that lets you put new tips on the cues -- and also some chalk).

[Greg H]

My counts on Day 9 of the NIH Campath trial show the positive effects of yesterday's two-unit RBC transfusion, with hemoglobin popping up to 9.5. I am, however, not sure how long that will last. The second unit, though B-positive and antigen screened, was also only three days from expiration. I guess, having weird blood, you have to take what you can get -- even at the nation's finest research institution.

Platelets continue to improve, and the neutrophils dance around, but still well into positive territory. And the lab guys continue to find the stray lymphocyte limping by from time to time.

My daughter Jeni dropped by for a visit; it was fun showing her the art hanging on the walls around here. There's an installation of fiber art on the first floor: framed landscapes created with thick embroidery yarn instead of paint. They are absolutely amazing.

Also notable are some ceramic figures by Carlos A. Beltran Baldiviezo and some more permanently-installed glass by a Washington, DC-area artist named Tim Tate, who studied with Dale Chihuly, the famous glass artist.

Some of Tate's pieces incorporate milagro-like symbols related to the healing process. One multi-panel work is dedicated to a particular Clinical Center nurse. This one is a hand holding a virus.


Tim Tate Milagro by hankins.greg, on Flickr

There are some really neat drawings and cartoons on the walls surrounding the Board Room on the fourth floor of the Hatfield building that were commissioned from various illustrators for a public health education campaign in the 1970s. This one shows old man "Cyte" and baby "Blast."


Old Cyte and Baby Blast by hankins.greg, on Flickr

[cathybee1]

You are giving us a better tour of this hospital than any volunteer would...though thinking about it, you are a volunteer! Your news continues to sound positive -- those neutrophils of yours are fighters.

Happy Thanksgiving, Greg, to you and your family.

[Greg H]

Hey Catherine!

A Happy Thanksgiving to you and Bruce, as well. I'll be feasting on whatever NIH has whipped up tomorrow in honor of the holiday; but we'll have home-raised roast chicken when I am back in NC.

I am happy to help promote these folks at NIH; they are "strictly top drawer."

My roommate for a few days was a fellow who had a stem cell transplant here six years ago. He had a fever and low blood pressure, so they checked him in and started running tests. Six years and they are still looking after him. That's a pretty strong commitment to patients.

You Californians having turkey? Or something with more of a West Coast flavor?

Take care!

Greg

[mausmish]

Love the artwork - thanks much for posting. Glad to hear you're doing so well, too!

[cathybee1]

Originally Posted by Greg H

Hey Catherine!

A Happy Thanksgiving to you and Bruce, as well. I'll be feasting on whatever NIH has whipped up tomorrow in honor of the holiday; but we'll have home-raised roast chicken when I am back in NC.

You Californians having turkey? Or something with more of a West Coast flavor?

Greg

It's Turkey...Bruce is originally from New Jersey, if that is worth a few more points!

Bruce had a transfusion today, he's feeling better, we're looking forward to a nice (albeit very cold) holiday.

[Susan L]

HAPPY THANKSGIVING!!!! I am so happy to hear that you are doing good. I know the NIH is top notch and it was amazing to hear that they still are looking after that patient after 6 yrs. Hope you can make a good Thanksgiving for yourself, as you have the most to be thankful for there. Take care and continue to up date all the wonderful info that you give. Best wishes to all.

[Greg H]

Platelets and Hgb by hankins.greg, on Flickr

Day 10 of the NIH Campath trial showed a happy improvement in my counts:
Hemoglobin is hanging in at 9.5 after my Day 8 transfusion.
Platelets took a nice jump up to 52
Neutrophils bounced back up to 1.56


Neurophils and Lymphocytes by hankins.greg, on Flickr

Neutrophils seem more prone to jumping up and down than the other counts. I believe they are the elusive elves of the blood system and spend a good bit of their time hiding in nooks and crannies where they can't be found.

Given that the few measly lymphocytes I have left are probably making the thymus (I understand they like to hang out there) a very lonely place, maybe the neutrophils duck in there occasionally to try to cheer up the decimated T-cells.

Daughter Jeni visited today and we went for a healthy walk outdoors -- in response to advice from a nurse who thought my lung capacity sounded "diminished." It was, in fact, too much time spent hunched over a computer trying to figure out a gnarly website problem. But the outdoors walk cleared everything up.

They have a patient fitness room here, but, unlike the library, its hours are fairly limited, and never seem to fit with my schedule.

Down on the second floor, near the cafeteria, there's an incredible collection of large framed photos taken with some sort of powerful microscope.


Lavender Leaf by hankins.greg, on Flickr

That pumpkin hiding in the thorny forest above is a scent gland hiding in the gnarled surface of a lavender leaf.


Scented Gardenia by hankins.greg, on Flickr

The dragon’s tail above is the miniature thorns and leaf hairs of a scented geranium.

[Greg H]

Happy Thanksgiving to all!

Catherine: I'm not sure Bruce gets points for being from New Jersey, though he may get points for having the good sense to move to California! ;-)

My daughter toured out there this summer and kind of fell in love with the place -- all of it, from South to North and in between. She's going back in the Spring of 2012 (if not before) and already has a bunch of gigs lined up.

I'm a little afraid I may lose her to the West. On the other hand, if she makes that move, I'm going to insist her sister give up theater in NYC for film in LA, pack up Marcy, my Mom, the chickens and dogs, and move to the North Shore of Oahu. (Heck, maybe Sarah can get a part on that new Hawaii 5-0 series. She'd make a good hard-boiled detective or prosecutor.)

Susan: I, too, was pretty impressed that they were still looking after a patient six years later. It's a pretty amazing place.

Happy Thanksgiving!

I think I'm having the cranberry-flavored Campath today . . .

Greg

[cathybee1]

Ah, Greg...it's so good to see all those pharmeceuticals haven't eliminated your sense of humor yet.

California does have a siren call. Especially the part where we are (we call it Upstate.) Bruce's dad, who moved to Tennessee, asked him for years when he was going to move back east. Bruce always politely said he had no intention of doing so.

I know what you mean about Hawaii. We have plans to celebrate our 25th anniversary in Kauai next spring.

Hope you had a happy holiday. And that you have safe travels back home.

[LynnI]

Greg,

I have been following your journey very closely and I am thrilled that everything is going so well for you!!!

As for your sense of humor, I thought I would give you something to chuckle over. That blue non stick bandage that they use for your PICC line? I know it as Vet-Rap or Co-Flex.............it is a non stick bandage for horses

Keep the cheer and good luck, happy Turkey Day too!!

Lynn

[Greg H]

Originally Posted by cathybee1

I know what you mean about Hawaii. We have plans to celebrate our 25th anniversary in Kauai next spring.

Catherine,

Sounds like great fun! I have only been once. Marcy and I spent our 32 wedding anniversary on the North Shore. It was wonderfully funky. We stayed in a big golf and tennis resort but only slept there, driving down to this place called Ted's Bakery for eggs and Portuguese sausage (or SPAM) every morning and pie every afternoon. (See below)

Take Care!

Greg


100_1809.JPG by hankins.greg, on Flickr

[Greg H]

Originally Posted by LynnI

As for your sense of humor, I thought I would give you something to chuckle over. That blue non stick bandage that they use for your PICC line? I know it as Vet-Rap or Co-Flex.............it is a non stick bandage for horses

Hey Lynn!

That stuff is great! I bet the horses like it as much as I do. It's good for keeping the PICC tucked up under your shirt sleeve, but it really shines when they use it instead of tape in phlebotomy. No trying to pull off tape without loosing more arm hair!

Take Care!

Greg