Tell me about Campath please

[Susan]

Hi All,

I noticed Barbara mentioned she was in an NIH Campath trial. I haven't kept up with all the latest news on Aplastic Anemia and new/potential treatments, especially for low platelets. I'll check the NIH site and do a literature search. But in the meantime could someone please tell me about Campath? Anything else new should ATG/ALG fail?

Thanks,

suz

[sprocket]

Campath is a monoclonal antibody that the NIH started using for people who did not successfully respond to ATG. Prior to being used for AA, it was used in chronic lymphocytic leukemia patients. I did not respond to ATG/cyclosporine and was subsequently treated with Campath (in 2004 at age 24) at NIH. The side effects during treatment were much more mild than with ATG, but my blood counts (all three cell lines) were in the toilet for several months after the infusion. Eventually, I did become transfusion-independent and have been that way every since.

The link below is a series of Campath-related posts on Aplastic Central. (If the link doesn't work for some reason, just go to aplasticcentral.com, click on "forum", and search for "campath".) If you have any questions, let me know.

-Becca

http://aplasticcentral.com/test/toas...fid=2&tid=2332

[Dave_in_USA]

Would appreciate input from other recipients of Campath protocal at NIH. Did you experience adverse side effects, how well did you respond to therapy. In addition, how long did you wait for a response and length of remission. Contemplating its use.

Thanks, Dave in USA

[squirrellypoo]

Hi Dave.

I received Campath as part of my conditioning for my transplant last July. It had previously been in trials here in the UK and was approved for use only a few weeks before my transplant, and was already very popular with the consultants as nearly all the transplant patients were getting it when I was there!

It was one of 3 chemo drugs I was given, and it was the only one that gave me any side effects at all (the other two might as well have been saline!). The nurses said people had some pretty bad reactions to it, but mine were all mild. The first night I had some breathing problems that were fixed right away with a nebuliser, the second night I had an itchy rash that went away after some IV hydrocortisone, and the third night I had a comedy sneezing fit for an hour, but that was about it.

It seems to have done the trick since my chemo sickness was nonexistent and my GvH has been really mild. It's also pretty cool to have had such a new and exciting drug, too!

[Dave_in_USA]

Squirrellypoo,

Thank you very much for the response. Glad to here your BMT has went well and you are experiencing only mild GvH symptoms. Wish you the best in the future.

Dave_in_USA

[Lisa Z]

dave-
I had Campath March 2010. Took me about 6 months,but my counts finally came back up.
they are not "normal", but good enought for me to function in a fairly normal way. I have not had a transfusion since June of 09 and am not currently on any meds except those taken prophalactically after the Campath.
I hope this lasts for many,many years.

[Lbrown]

Do you take immune suppressants for awhile after taking Campath? I've just had ATG.

Thanks,
Deb

[alyse]

Hi:
I just met with NIH doctors on Tuesday to discuss participation in Campath trial. One goal of Campath vs. ATG is that patients will NOT be on cyclosporine. However, NIH doctors did say they reserve the option of giving it to patients to boost counts if the Campath isn't working on its own (or only partially working). I should have asked how often they have used cyclosporine with patients in the trial.

I would love to hear from more people who have been in the Campath trial including those who had it a few years ago. I am an AA patient who recently relapsed from ATG and Cyclosporine after less than two years. I did fabulously on ATG but had many side effects post treatment. I have heard that Campath is a more benign treatment. Still I am concerned because so few patients have used it and there is no long term data available on success rates. I must make a decision soon to be in the Campath trial or do another round of ATG.

Thanks for any comments.

[Lisa Z]

Hi Deb-

Campath is different than ATG/ Cyclosporine, because after the Campath treatment, you are done. You don't take anything else. Now, part of the trial states that if you responded, and then relapse, you would go on cyclosporine, but it is only used in that scenario. If you respond, as I have, and my understanding is that most patients have, then you don't have any additional suppresents following treatment.

I think that one reason is that the Campath suppresses the immune system to a greater degree than the ATG/Cyclosporine........

Hope this helps

[Lisa Z]

Alyse - it is a hard decision - as they all are. As you state, there isn't any published data on the trial because it is too new and fairly small, but when I ask, they always tell me that almost everyone has responded favorably.

Did you meet with Dr. Olnes?

[Lbrown]

My doctor said the Campath was more specific to the problem T cells than ATG was, so it could be a better option, but that it was more expensive and the hospital would not pay for it (I'm in Canada) unless there was a good reason. Being allergic to ATG would have been a good reason, but I wasn't. It's too bad - I didn't realize there was no immunosuppression following Campath.

Thanks for the info, very interesting.

Deb

[Lisa Z]

Deb-

I'm surprised anyone would pay for it, since it is not standard treatment... but I don't know how things work in Canada. If you do the trial at NIH, you don't incur the expenses at all because you participate in a trial and no benefit is guaranteed to you. they also take more blood and bone marrow for research uses. But, perhaps you shoud look into it. It is 12 total days that you spend at the NIH....

[Lbrown]

It would have been an off label treatment, which is why the hospital would not have paid for it, unless I turned out to be allergic to the treatment they would cover, which was ATG.

In Canada, if you are treated in a hospital, the hospital picks up the cost.

[Greg H]

Hi All,
I've ben reading about the NIH trial and also found the abstract from last December's ASH conference on the use of Campath use for hypo-MDS.
I fit the criteria, but my university-based transplant doc is very negative on Campath, indicating that it is notorious for activating dormant CMV and EBV and would complicate any future transplant.
I'm not sure I want to go the transplant route, but I'd hate to mess up the prospects for one.
Anyone else had feedback like this?
Thanks.
Greg

[Lisa Z]

Greg-

After the Campath treatment, you are put on medication, (prophalactically), to protect you from activating both CMV and EBV. You have to take them until your CD4 counts come back up to 200. You will be closely monitored for these 2 virusus after your treatment.

You take a daily tablet of Valtrex during this time. It has been 1 1/2 years since my treatment, and I still take the Valtrex, as my CD4 count is not up to 200 yet. It has risen significantly though, compared to 6 months ago.

My local dr thinks it won't be long now until my CD4 count is 200 and I can stop the meds. That being said, I'm sure there are people who have had their viruses activated while on or after the trial..... if I recall, that may have been in the trial protocol, actually.

You have to weigh the pros and cons and make the best decision for you.
I've been totally happy with my results from the Campath trial. I have not had any viruses at all, my counts have all improved and I have not had a need for a transfusion since June of '09. (btw, my trial was in '09, not in '10 as my original post stated).

Hope this helps you with your decision.

Good luck to you!!

[Greg H]

Hey Lisa Z!

Thanks for that reply. It sounds like Campath was really a great choice in your case. I've made contact (left a voicemail) with the team at NIH.

Clinicaltrials.gov indicates they are still recruiting, so I figured I'd at least explore the option. I notice MD Anderson also has a Campath trial underway, though the protocol is significantly different -- and tough if you don't live 'round there.

If you don't mind my asking, is your MDS hypocellular, with Trisomy 8 and/or PNH clone. Those, along with age, seem to be the key predictors of success with immunosuppressants for MDS in general and I notice they are looking for that sort of profile in the Campath trial at NIH.

Any of you other MDS folks had Campath?

Greg H

[Lisa Z]

Hi Greg-

When I first went to NIH, they initially diagmosed me w/AA, then changed the dx to MDS. At the time of my trial, I don't recall very much, (perhaps it was hypocellularbut I did and still do have a PNH problem. I also have all 3 lines of blood counts that were low. (red, white, platelets). funny thing happened 7 days into my trial. My cytogenics came back from the BMB and it showed Q7 deletion. Had that happened prior to the trial, I would have never done the trial. The funny part is, the Q7 (and I don't even remember if this is the right name...) chromosome abnormallity disappeared in my follow up BMB. Everyone was extremely surprised. My chrommosome are normal now.....

I'd be interested in reading about the other Campath trial at MD Anderson, just out of curiousity.... to see what their cirteria is for admission into the trial. Do you have a link?

[Lisa Z]

greg-

You sound like you're similar to what I had. I was watch and wait for a while. I was also about 6 weeks apart w/transfusions and could have stayed with the "watch and wait" option.

For me, it worked out. As it is, I had iron overload and was on Exjade for 6 months. (went off it end of Dec. '09). I hope I never have to use it again! I was nauseaus every day. Going to work was not fun.

I also appear to have a genetic tendency for my body not to "recognize" when I have enough iron, so I guess I hold more iron than most people do, due to that. But, I've never been told I had too much iron in my otherwise healthy life , up to this. But, it was something my hematologist tested for. Perhaps was never tested prior to this. Now, I tend only eat red meat 1x week.

[Greg H]

Hey Lisa Z!

Here's a link to the MD Anderson trial. (http://tinyurl.com/35gj4bk)

It looks like the are using a lower dose and administering the drug in over ten days in a 28 day cycle with up to 6 cycles in the trial -- more like the way that Vidaza or Dacogen are administered instead of the one cycle and you're done approach at NIH.

Thanks for all the info you have provided.

Greg

[Greg H]

Lisa Z,

Watch & Wait was really my decision. My local oncologist was ready to go with Vidaza (even scheduled and appointment for the portcath installation) and my transplant doc is ready to go at any time.

But, knock on wood, so far the quality of life issues revolving around the 6-week transfusion cycle and periodic fatigue seem far more manageable than the possible side effects of Vidaza -- which has an unimpressive record of helping low-risk patients -- and the huge risk of a transplant.

Campath is very tempting, if I can get in a trial. But the transplant doc is strongly opposed, and I'm not quite ready to jeopardize the possibility of a transplant in the future. I'm in pretty good shape and figure I might be on the bright side of the transplant statistics.

I haven't spoken with my local oncologist about the Campath idea yet, which is one reason I'm gathering info.

Greg

[Lisa Z]

Greg-

Do you feel the campath would make you not likely to do well with a transplant down the road? I'm not sure that is so....

But, in any case, I'm glad you're doing well now. Wait and watch is often a good option.

I think most of us are just "buying time" with whatever options we choose, until better options are available. I'm almost 56, so I know as I get older, I may only be avail. to get a mini transplant. But, I do have a matched sibling donor, so that is always good

Time will tell. All we can do for now is stay positive!

[Greg H]

Lisa Z,

I think this feeling about Campath could be a peculiarity of my doc, perhaps based on some bad experience with it in the context of transplant, as opposed to being used as a standalone therapy. She is very focused on the transplant process itself and very cautious about anything that could lead to complications during that process.

So, for example, she's cool with me starting on immunosuppression with cyclosporine, but not with ATG, because ATG is very important post-transplant and she wants to reserve it for use then.

I'm going to talk all this over with my local doc, who is not as transplant-focused and probably has a better feel for why I might be looking for alternatives to transplant.

You are right on the money about "buying time."

I have no matched sibs but three matched donors from the registry.

Greg

[Laura]

Greg,

I have never heard of Campath prior to transplant affecting transplant. You might want to get a second opinion on that.

I received Campath as part of my BMT process. It was a trial at the Mayo Clinic in using Campath instead of ATG. I also got high dose Cytoxan and radiation. I am so thankful I did Campath and would do it over again if I had the choice. I did reactivate CMV even though I was on protection to prevent it. But I cleared it and have been on protection since. Although I won't have to be on protection for life.

Laura

[Greg H]

Hey Laura!

Thanks for that info. Does the Campath or ATG come into play prior to or after transplant?

It's interesting that one substitutes for the other. As I understand it, my doc uses ATG, so she doesn't want me using ATG for immunosuppression earlier on, in effect, saving it for use during transplant.

I clearly need to do some research into how these drugs work, so I better understand why she thinks its a problem to use them now and use them later.

Thanks again!

Greg

[Laura]

Greg,

I did two rounds of ATG prior to transplant. I was never told about it negatively affecting transplant. I have heard this before from other patients that doctors have told them that. I have also heard that it is silly to say that or think that. Hard to know what to believe when different "experts" say different things and believe different things!!!

Anyhow, the doctor did say because I got two doses of ATG only about 8 months prior to transplant. He did say that probably helped me in wiping things out for transplant since it was so close. But he didn't say it was a bad thing.

I did Campath as my conditioning for transplant.

Where are you being seen at?

Laura