The Leukemia & Lymphoma Society Community: Message List

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Tue, 27 Oct 2009 15:30:50 GMT

hahahha I guess they are "light" weights.

Well I have some fantastic news, but not a whole lot of details. I got a call this morning from Caroline. Nurse Practitioner came in and told her she spoke with her Primary Onc and he is thrilled with the BMB results. Under 10% blasts!!!!!!!!!!!!!! Yippiee! They are keeping her on the Gleevec since it is doing such a great job. Hopefully the blasts keep falling and she won't need Chemo prior to DLI!

Tex, this was a past question of yours, but aDLI and activated DLI are the same thing. Here is the link to the aDLI trial at Penn that I am hoping she is eligable for: http://clinicaltrials.gov/ct2/show/NCT00674427

Adam

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Mon, 26 Oct 2009 15:59:26 GMT

Something I should mention is that Caroline isn't feeling too bad. Just run down. Here is a great video of her pumping some iron!

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Mon, 26 Oct 2009 15:52:54 GMT

Hi all,

Sorry I haven't been updating, I have kind of been waiting for Caroline's BMB results to come back before I got on here and let everyone know the plan. She had the biopsy last Monday and results were still not in this morning. The good news is she has 0% blasts in her blood (started at 70%). The bad is she also has no good cells. I asked the doc about prelim results from the BMB and he said he knew there were still some disease and a lot of megakaryocytes (pre-cursors to platelets), and that they needed to wait for final results so they can compare the BMB at relapse and the latest one to see if it got better or worse. There is also the possibilty that the Gleevec is putting on a show (shows no blasts in blood, but its really still in marrow) So I really won't know what is going on. Caroline has needed transfusions about once or twice a week to keep her counts up. No fevers for the past 3 days, so that is also a good thing.

I am just really worried that because Gleevec isn't supposed to really hammer all the good cells like hi-dose chemo does. If her blasts are down that low, I would figure her body would be producing some kind of cells.

Anyways, I know we will have some kind of plan once the results from this BMB come back, and when we get those, I promise I will be right back up here posting.

Adam

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Sun, 18 Oct 2009 17:47:12 GMT

Hi Cathy,

She is neutropenic from the Gleevec (I'm sure the aml isn't helping).

They actually thought about stopping the gleevec or a bit to see if

her ANC would rise, but decided against it bc the Benifets of the

Gleevec.

Adam

On Oct 18, 2009, at 11:04 AM, secondtimeround <communityreply@lls.org

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Sun, 18 Oct 2009 13:58:52 GMT

Hello Everyone,

First, thank you for your kind words and encouragement. We are going on almost 4 weeks at HUP with fevers. Really sucks. Caroline could be at home this whole time talking her Gleevec. It took awhile, but she has shown a pretty significant response to the drug. Went from about 70% blasts into the blood to somewhere in the 30% range (this was a few days ago, so I will have to find out what's going on now). For now she is here until she gets rid of the fevers. The only infection they have been able to find is c-Diff, and she really doesn't have any symptoms. They found this about a week ago.

Her appetite has been pretty awful so they have finally agreed to start her on Marinol and it has defiantly improved. She has small hankerings for food as where before she didnt want anything. She is on a very low dose right now, so we are going to ask them to bump it up so that hankering for food turns into a desire. Some of the side effects have been elevated mood and a few smiles here and there .

So the overall plan is to keep her on the Gleevec as they watch her counts and to do a marrow soon to see if the blast count in the peripheral blood matches the marrow. If the Gleevec gets her where they want her, they will move on to DLI or hopefully activated DLI. There is a great trial going on at Penn right now with activated DLI. If the Gleevec doesn't get her blast count where they want it, on to chemo... I hope we don't have to go there, but if we do, we march on.

Adam

P.S. Please keep the positive thoughts going to the Gleason's as they are in a tough spot right now.

Re: platelets going down with cellcept and/or steroids

communityreply@lls.org — Sun, 18 Oct 2009 13:45:29 GMT

Hi Amy,

It was good to see you last night at HUP (of course I wish it was in a better situation and am praying that things will turn around). I am still on 7 with Caroline, so if you need to talk or just want to take a walk outside of this place, I have emailed you my cell. Give the Hydroxyurea some time to work (I know its a completely different drug, but Caroline took 2 weeks to respond to Gleevec) and lets hope some of the other complications turn around.

Our Best,

Adam & Caroline

Re: Relapse after SCT - Updates from "Counts have been steadily dropping for the past two weeks"

communityreply@lls.org — Mon, 05 Oct 2009 16:11:07 GMT

Hi All,

Sorry for the lack of updates. It has been a crazy week. To make a long story shorter Caroline was readmitted Wednesday the 23rd with fevers and shingles. Then they let her loose this past Thursday night because the fevers had subsided. Then... Saturday morning at 3am, another fever, so back to the ER and readmitted around 9am Saturday where she remains. The fevers haven't been bad (101ish) and shes just been having one a day around 10pm. All tests have come back negative so they have no idea where the fevers are coming from. Their best guess is the Leukemia. So right now she is on anti-viral's, antibiotics, and anti-fungal's to cover everything (she is hovering around an ANC of 500, so they are taking neutropenic precautions.

So back to the PH+ marker and the bigger issue, the relapse. We have learned that along with the PH+ maker, there are a few other genetic mutations that have occured. Nothing of huge signifigance like FLT3, but still mutations, which is a tell tale sign of disease progression and growing resistance to treatment.

Let't get to the cup half full part. They have started Caroline of Gleevec and her white count has fallen from over 20 to around 8 (as of sunday). This is a good thing. We also found out that Gleevec works for about 3-4 months in AML patients (can get you back into full remission) and is a good bridge to DLI or activated DLI (the have a phase II trial at Penn right now).

They are happy with this because they can in theory use Gleevec (very low toxicity compared to chemo) to get her to DLI.

Now the cup half empty. In literature and on paper, the chances of a cure are pretty darn low. Relapsing before 6 months after sct is not a good thing. But I am not going to look at it like that because the docs have never seen this kind of mutation happen before. There is no literature available so Caroline doesn't 100% apply to these stats. Other people have also got into durable remissions with DLI after relapsing that quick.

So we are going to keep our chins up and keep fighting. As soon as I know more or she springs out of Penn, I will put up another update as soon as possible.

One last note.... Saturday was Light the Night in Chester County, Caroline was pretty upset that she couldn't come. So I rigged up my laptop, an AT&T 3G air card and skyped (video conferenced) with her from the the event. It was a hit and she could see all of her supporters. If I can find a picture of me holding the laptop with Caroline on it, I will post.

Thank you all!

Adam

Re: Counts have been steadily dropping for the past two weeks - Updates for Caroline from the "Living with AML Forum"

communityreply@lls.org — Sun, 27 Sep 2009 01:49:38 GMT

Sorry about that. I was kind of rambling. Hopefully I can be more

informative as Dr. Goldstein will be doing rounds this week and he's

the man with the information. I didn't recently get an email from

you. Last one was when we were in clinic on the 11th. Did you send it

to Caroline?

Re: Relapse Post Transplant

communityreply@lls.org — Sat, 26 Sep 2009 15:26:08 GMT

Sorry, yes still AML.

Adam

Re: Relapse Post Transplant

communityreply@lls.org — Sat, 26 Sep 2009 15:20:34 GMT

My moms good friend was treated for PH+ AML about 1.5 years ago in Boston and is doing well(SCT). That is the only reason i had heard of it. I know that 95% of CML patients have this marker and Gleevec works incredibly well for them. Time actually called Gleevec "The Silver Bullet" to curing cancer. From what I understand, Gleevec also works well with AML and doesn't touch any of the other cells like chemo does, but AML so seldom has this maker. But what I don't understand is that if AML does show this, you are put in the poor prognosis group right from the get go... Weird.

I am also glad that they are encouraged by this. They got kind of excited when they found out as I know they weren't thrilled with throwing another round of high dose chemo at her.