Accepted into Campath Trial at NIH
 

Hey Y'all!

I got word Tuesday that I have been accepted into the National Institutes of Health's Campath trial for younger (I feel less bald and less grey every time I get to use that adjective!), low-risk MDSers.

I am pretty stoked about this, because I am convinced (after much careful study) that the kind of MDS I have should respond to immunosuppression. And I like the idea that Campath is more of a rifle shot at a couple types of T-cells instead of a shotgun applied to the whole immune system.

We'll be looking for transfusion independence and normal cytogenetics.

Now I just have to figure out how to fit the two weeks at NIH into running a small business. Looking at the calendar, I may finish up with the Campath on Christmas Eve. Yikes!

Greg

Congratulations, Greg. One of the requirements for eligibility is "Patient must have the ability to understand the requirements of the study." You certainly aced that requirement since you had already studied the trial, your situation, and the theory about how Campath works, as you explained in your forum thread here.

I hope you can get someone to help with your business and/or some cooperation from customers during your "vacation" so you can take your mind off work while you zap the rogue T-cells and dodge infections.

I wonder how being on the trial will affect your transfusion schedule. Will they want the "tank full" when you start the trial?

Campath
 

Hi Greg,
Wonderful that you will participate in the trial with Campath! You know during the spring 2009 I heard professor Eva Hellström Lindberg (expert in MDS) talk at a MDS patient forum about MDS patients with RA treated with immunosuppressive drugs. Some of them had responded very well for so long time that they perhaps were cured.
Kind regards
Birgitta-A

Greg,

That's great news. I envy you your knowledge about all of this. You have been such a help to a lot of us in this journey.
I hope you have great results in this Campath trial. This may be a very Merry Christmas for you!

Congrats!
 

Greg,
Good luck to you and congrats on passing the acceptance test ;-) We'll be watching your progress!!!!! We expect great things!!!!!!!!!!!!!!!!

Hugs, Cindy

Way to go!
 

Congratulations on the Campath trial acceptance. What a great Christmas present. Good luck in getting assistance with your business.

Ah, make that a Thanksgiving Present?
 

Hey Guys!

Thanks for all the good wishes. Looks like this whole thing may happen a month earlier than I was expecting. Some department in NIH that is essential to my scheduled departure is actually closed on Christmas Eve, so we're now looking at doing this in a couple of weeks. I'd be done on Black Friday.

Birgitta, the Principal Investigator for this study told me they have some folks who were among their very first Campath patients who remain transfusion independent. So I am hopeful that we will get a durable result.

Neil, one of the less happy details I discovered about the trial during my screening appointment is that it -- like seemingly every other drug they give you for MDS -- tends to depress counts at first. The PI seemed to think I might have an increase RBC transfusion frequency for the first month or six weeks and might even need a couple of platelet transfusions. But their experience has been that the counts bounce back pretty fast.

As far as topping up beforehand, that's one of the questions I have on my list to email to the nurse coordinator in the morning. I should be just about ready for an RBC transfusion by mid-November -- unless my recent luck holds and my Hg falls more slowly than is typical.

Thanks again for the encouragement. I'll keep you posted.

Greg

Ooh that's so soon, how exciting! So if you end on Black Friday, when do you start?

I had Campath as part of my transplant last year. It was kinda strange, the first night I had a tight chest and breathing problems (fixed with a nebuliser for a few minutes), the second night I had a really itchy, full body rash from it (easily fixed with IV piriton/hydrocortisone), and the third night I had a comedy sneezing fit (fixed, err, only by my fiance and mom laughing at me and taking my tissues to the bin!). And after that, nothing at all... But the transplant nurses were saying that everyone had different reactions to it and they couldn't predict what would happen, so fingers crossed you just get the itchy rash or nothing at all!

And I just wanted to say how nice it is to have nurse specialist on email - both my pre- and post-transplant nurses were always on email and it makes it just SO convenient to pop over questions as you think of them.

Greg-
 

Congrats on getting onto the Campath trial. I did it March of 2009.I have been transfusion free for 1.5 years now. Yes, my counts did go down first. And, yes, my transfussions were even closer together for a while afterwards, but my transfusions stopped altogether 3 months following the end of the trial, and by 6 months, my counts were good enough! I remain low on all 3 counts, but good enough for me to live a normal life. I play lots of tennis, (singles), even with my hemoglobin in the high 9's or anywhere in the 9's for that matter. My body just adjusted.

I hope it works as well for you as it did for me. Just be patient afterwards. It is hard, but for me, has been worth the wait.

Feel free to e-mail directly with any questions you may have.
lzieske@verizon.net

Best of luck!
Lisa

Hey Melissa,

Thanks for the info on your experience with Campath. I am hoping not to have itchy rash, but, if it's over quickly, I'm sure I can deal with it. I've been told to expect to feel like I have a seriously bad case of the flu for a couple or three days -- including chills, the shakes, etc.

It's a 12-day stay at NIH, 11/15-26, if all goes well.

I really wish my local hematologist was more email friendly! I wind up faxing his triage nurse (who is outstanding), she calls him and then calls me. That's nuts! I read an article on the Cleveland Clinic that talked about their new system that has docs on email; your labs accessible via the web, etc. I would love that. It makes me nuts to have to pry my labs and other records out of the bureaucrats in the medical records department.

Take care!

Greg

Hey Lisa Z!

I found your posts here Googling after I spotted the Campath trial and your sharing your experience helped convince me to give it a go.

Thanks for the offer of info; I'm sure I'll be taking you up on that.

Greg

Greg
 

Your background is also very similar to mine. I was contemplating the BMT, as I have a matched simbling, but except for one time when I had a bad BMB, they told me it really wasn't the best option, based on my current risk level.

I was an emotional wreck the few days before the trial, even the 1st 2 days at the NIH..... should I do this, should I just keep transfusing, etc. etc. I finally made the decision to do it, and in retrospect, it was the right decision for me.

I did get "rigors", (bad shakes and muscle rigidity), but the nurses are right there with the demerol and that takes care of it. That is really all I experienced, (the test dose and one or two afterwards), and some tingling in my palms during and shortly afterwards.... maybe very minor itching when I went outdoors during my stay. Nothing that YOU cannot handle!

Will you have anyone with you? I forget where you live.... My husband stayed with me in my room on a bed that was really a chair, but folded out to a bed. I'm sure not everyone required someone that close by, but like I said, I was an emotional wreck.

Good luck. I'm sure it will all go well.

Hey Lisa!

Thanks for that info on how the Campath affected you. I'm hoping for a mild reaction.

I had my "freak out" when I got the call on Thursday and learned it was going to happen in two weeks instead of six. But I'd only had four hours of sleep the night before and was dog tired. I got over that by morning.

My wife Marcy is going with me and will stay in a hotel that's very close by (fortunately, they had an NIH patient rate). She's going to hang a round 'til I get through the two or three days of shakes and then split. My daughter's planning to pick me up and drive me back to NC.

I'm encouraged to hear about your continued transfusion independence -- and it's good to know it really can take three months or so to get there. I had much the same decision-making struggle as you. Unlike so many of our friends on this forum, my symptoms have thus far been tolerable. But I've already picked up one antibody from transfusion and my chromosomes seem to be evolving. So I figure I better go for this while I still have the option.

When I was freaking out a little, my wife, who is usually way more worried about this than I am, said, "You've done all the research, you know this is right for you, you've worked and worked to understand it and get in this trial. No time to get cold feet now."

All that's true, and I'm ready to go for it.

Take Care (hope that kidney thing settles down!)

Greg

Thanks!

Greg

Greg-
 

Your wife is 100% correct! You'll have to let me know how you are doing, while you are there.

Food is pretty good, actually, and you can eat whenever you want during the time that the facility is open. They bring everything right up to your room.

You'll find the nursing staff excellent and the doctors wonderful. It is a great facility.

My kidney counts are back in normal range. I will be careful, however, to drink more water. It was a bit of a scare.

I guess this will be a Happy Thanksgiving for you. I have all the confidence that this well be good :)

btw........... what part of NC do you live in? We went to the Outer Banks this summer. I loved it!

Hey Lisa!

Marcy (my wife and pal) wants to know if you did anything special, other than the antibiotics, to avoid infection when you got home. Did you wear a mask in public? Did you go to any great lengths about your house (like post-transplant)? Any special dietary stuff?

We're over in the middle of the state; but we used to vacation on the Outer Banks.

Take care!

Greg

GREG
 

Hi Greg and wife :-)

No, just common sense type things. In fact, I teach in a fairly large high school. Left the NIH on a Friday, and went back to work on that Monday. I used, and still do, hand sanitizer all the time. I try not to share things that other people touch. If I have company, (and I did not have any little family members visit for the entire 1st year), I ask people to use hand sanitizer when they come over. I used bacterial wipes on things like refrigerator handles, that anyone in the house may touch a lot. But, no, no masks or other meds. I did have Tamiflu on hand, just in case I thought I had the flu....

I avoided the kitty litter and didn't go crazy about petting the pets although I was told that the dog and cat were fine.

Ask your doc before you leave about diet. While you are there, you get 'special food' not from the regular kitchen. Things are washed more, etc. So, you do want to be careful about washing fruits and veggies, and even some things take the skin off. I wouldn't eat out for a period of time; and you do want to avoid processed foods like deli meats, etc., but they will tell you and give you a list of all this when you leave.

If you want to see a dietician while you are there, I'm sure they would arrange that. Someone to spell things out more precisely. You can also have a visit from clergy while there. While I didn't ask for it, their rabbi came and visited me twice, and I have to say, it was a wonderful thing, (given my mental state of mind!)

Hope this answers your questions, and then some.

Best of luck!

Lisa Z

NIH On Monday!
 

Hi Y'all!

I'm sitting in the local day surgery getting two units of PRBCs -- kind of a fill up before I makes the trip up to NIH on Sunday to start my 12-day sojourn and the Campath trial on Monday (11/15). My Hgb was 8.6, and we don't usually transfuse 'til it drops below 8. But there's a lot of cardiac testing prior to the trial and the research nurse asked that we not let Hgb get low enough to cause any heart flutters or such, because that could put the kabosh on the whole deal.

The schedule says we start with an Echocardiogram t 8:00 am on Monday, followed by getting suited up with a 24-hour Holter monitor. We give them blood, sign a lot of papers, and get checked in. The real business gets underway on Tuesday. I'm already signed up for a wireless internet password, so I hope to continue to check in while I'm there.

Take Care!

Greg

Greg
 

Hi Greg-

Well, you are on your way. Did you get your PIC line yet? btw.... my laptop didn't work very well down there..... but I was still able to get my Internet based w-mail via their TV setup, so that was ok. Hopefully your laptop will work better.

I wish you good luck with the trial. Keep me posted. I'd be interested in hearing how it all goes.

Lisa Z

Hi, Greg. I'm wishing a very uneventful week for you next week (and thereafter).

Hey Lisa!

Ouch! If my laptop doesn't work I will be seriously bummed. Do you have a Mac? The helpful person in the library told me Macs have an easier time of it.

They are going to insert the PICC line on Tuesday. Do you have any advice (or -- perish the thought -- horror stories) about that? I've never had one, so I'm not sure what to expect. I have cruised around online, so I know the basics. But I'm not sure how limiting or uncomfortable it will be.

By the way, did the flu-like stuff persist all day for a couple of days or was it mostly just during the actual infusion (or shortly there after)?

Thanks!

Greg

Thanks Catherine!

I think I saw you post in another thread that Bruce's copper is up. That's good news -- and he's taking only half the mgs that I am. I may need to get some of that probiotic stuff going. Or maybe it really was the stomach meds messing up absorption. I hoping the improvement continues.

Thanks!

Greg

Good luck, Greg! It's always good to top off before setting out on a trip. ;) I'll look forward to your updates.

Hi, Greg, I'm butting in here, but both Bruce and my mother had PICC lines. Neither of them had any problems (or pain) with the procedures to install them or subsequent issues. They both had the lines going in from their arms. Bruce had his connected to an infusion pump and the pump gizmo was the biggest hassle for him, as the tubing to the PICC line could get caught on things if he wasn't watching. The dressings got changed once a week, but we were able to have a home health nurse come in and do that.

Dangling Ports
 

Hey Karen!

Thanks for the well-wishes. I'll be watching for your post-Turkey transplant reports.

Catherine,

Thanks for the PICC line info. If all goes as planned, this one goes in when I get there and comes out before I leave. I think my Dad had one (Which he pulled out, as I recall. Alzheimer's can be tough!) Did Bruce find that having ports hanging off his arm made dressing, bathing, etc. challenging?

Thanks!

Greg

There were precautions about not getting the entry point wet. The PICC line itself had a little pigtail that was pretty easy to work around for getting dressed. There was a kind of bandage on the entry point into the arm called a Tagaderm, which is like a bandage which has a clear cover and lets you visually see what's going on with the skin. The Tagaderm provided a good barrier to dirt and water. But as I recall we put Bruce's arm in a plastic bag and he was able to bathe and shower without any problems.

This is what his PICC line arrangement looked like. It was similar to the one my mom had 2 years ago though the dressing was different.

http://www.google.com/imgres?imgurl=http://www.hpnonline.com/inside/2007-07/0707-images/OR-Centurion-SorbaView.jpg&imgrefurl=http://www.hpnonline.com/inside/2007-07/0707-OR-bandages.html&usg=__xB6tD8nGDVcsfknStph9NrVQoj0=&h=360&w=266&sz=14&hl=en&start=10&zoom=1&tbnid=YRULj HUhWW1H1M:&tbnh=113&tbnw=87&prev=/images%3Fq%3DPICC%2BLINE%26um%3D1%26hl%3Den%26client%3Dfirefox-a%26sa%3DX%26rls%3Dorg.mozilla:en-US:official%26biw%3D1345%26bih%3D512%26tbs%3Disch:10%2C525&um=1&itbs=1&iact=hc&vpx=286&vpy=144&dur=1 364&hovh=261&hovw=193&tx=87&ty=168&ei=XxrfTPeuCJG6sQPOmtGHCw&oei=NhrfTOuNOIfmsQPv5oi0Cg&esq=2&page=2 &ndsp=24&ved=1t:429,r:17,s:10&biw=1345&bih=512