[kami]

Sister,

My dad had Lloyd Damon as his doctor at UCSF…he was great on every level. He knew his stuff…and was always open to speaking with other docs at other hospitals.
Who is your doc there??

k

[kami]

Diane,

My dad had all these complications 4 years ago when he first got diagnosed with MDS. Vidaza put everything in check for about a 1 year…and then he got even stronger with revlimid for over a year and half.(and he’s not 5q-.)It’s just matter of finding the right drug that is a match for his body and his cytogenetics. It’s been said over and over on THIS site especially that these drugs affect everyone differently.

From what you say, your father seems strong. So you be strong; take Mary’s advice…DO NOT GIVE UP….EVER! For his sake. Unexpected things happen with this disease,a lot of times for the good.

Hang in there!

[kami]

You know to be honest, they never did a BMB while he was on Revlimid, just because all his blood lines improved. But my hunch is that revlimid kept the blast count at bay…it never decreased them. When they did the BMB after the revlimid stopped working…his counts were still at 10%. That was exactly what he started with. I guess like you said before, sometimes just keeping them at bay is good enough.

However, I remember Kirby Stone on this site had really good luck with Thalidomide, and then they put him on revlimid…and he seemed to responding well to that as well. And I don’t think he was -5q either.

I also remember he had RAEB 2 before the thalidomide, and then after, his blast count had decreased significantly…I don’t remember to what though…??

Warren, you may want to look his name up. Either way if Revlimid keeps your counts up…that’s great, because it’s somewhat easy to tolerate(at least it was for my dad.)

[kami]

Warren,

My dad was not -5q and revlimid worked pretty well on him for over a year and half. Usually they guage the efficacy initially by the reticulated red blood counts…in my dad’s case his reticulated counts jumped from 40 to 60 to about 110-120 after about 3 to 4 weeks. This isn’t necessarily the best indicator, but it did give the doctor some indication that there was activity.

k

[kami]

Jack,

His chemo regimine ended on April 1st. They gave him Idarubicin for 3 days, Ara-C for 3 days, and then topped it off with etoposide on the 7th and final day for 3 hrs.

The side effects were pretty manageable during that period. The Nadir came 2 wks later. And even now his biggest issues are the mouth sores and the persistent exhaustion.

The docs say that the slow recovery in his WBC’s is attributable to his age(76) and the underlying issue which is his MDS.

He manages to get up and go walk around the hall for 25 to 30 min daily. But the lack of response on the WBC’s has me a bit nervous.(even though the docs say that it is totally standard) Standard of what?

I’m glad to see that things seem to be on the up and up for you guys(always promising when positive things happen on this site)…maybe you can pass some of that luck in our direction…

k

[kami]

Jack,

Is she in the hospital or did they let her go home(I wasn’t clear.) My dad is still in the hospital. They started the neupogen shots 11 days ago, and his white counts have not moved one bit. The doctor said that it’s totally normal that the counts haven’t moved yet. I had/have the exact same concern as you do. Especially considering that he’s had other treatments prior to the induction. I guess it’s a good thing that the same info is coming from your doctor and ours. I feel a little bit better…I think?

His Hematocrit held for about 5 days(for the 1st time)which may be a decent sign of something…
They won’t let his count go under 30(i guess because of his age.) But the white count is worrisome, because the mouth sores aren’t getting better,and they’re constant reminders that the white cells/neutrophils aren’t moving…at all! More than anything, there’s a psychology factor as well(for all of us.) You want to feel like there is some light at the end of the tunnel…and this point it doesn’t feel like there is.

The doc also mentioned that they probably won’t realease him until about 1 week after his counts recover(whenever that may be?)

Good luck on your end …I think of you guys often.

Kami

[kami]

Jo,

That sounds VERY promising(knock wood)…ironically my dad’s doc(early on) had the same mentality with the combo treatments. If one treatment was working…why mess with it. As the saying goes…”if it ain’t broke, don’t try to fix it..”

Sooner or later something will come out to treat this god for saken ailment. If they found Gleevec for Chronic Leukemia…they’ve got to find something for MDS and AML. Sooner or later it will happen. In the last 2 yrs alone 2 new drugs have hit the market for MDS. THere will be more!!

Keep us posted on his progress…give us some MORE good news girl!

kami

[kami]

Jack,
That wasn’t the news I was hoping to hear about Cheryl’s dad…

From my very LIMITED understanding, clofarabine is said to be as potent as inductive Chemo(MEC…or IDEA chemo) but easier on the body.

From all of your past posts, your wife seems to be a WARRIOR, she’ll be just fine.

Hang in there!!!

k

[kami]

Jo,

I apologize, I was thinking of cheryl when i asked how “you’re dad was doing on clorfarabine”

it’s been a long tiring 2 weeks…i don’t know where my mind was.

how is your husband doing on DACO?
Have you asked your Dr. about doing a combination treatment with one of the H-Dac inhibitors(vorinostat, valporic acid…?)

[kami]

Hi Jo,

No, we went the inductive chemo route. With 40% blasts in his marrow…the doc said that there would be about a 25% chance for remission with just Dacogen.

With inductive chemo(according to the doc) the odds were at 51% or higher. Not great, but better than 25%…
He is currently at UCSF hospital, he checked in on the 24th of March. He finished his last round of chemo on Monday.(the ETOPOSIDE treatment)

So far he has tolerated the treatments pretty well…but the next 10 to 14 days are the critical windows because he essentially has no immune system right now.

After that we’ll have to see if the treatment was even effective. I’m hoping that he’ll fall into that 51% category.(My 4 month old boy needs to know his grandpa!)

Dr. Ravandi at MD Anderson and his doc… Dr. Damon at UCSF spoke about the trials they had at MD. Anderson…and I think they felt that the best course of treatment under the circumstances were that he should stay in SF and get inductive chemo

HOWEVER, Dr. Ravandi did mention that he has patients even MORE advanced than my dad who are experiencing a full remission in their DACO/Vorinostat trial…some food for thought I guess?

Apparantly this course of treatment isn’t nearly as hard on the body as the inductive route.

One thing he did emphasize was that… I’m quoting here “I unfortunately don’t have the magic bullet that you look for”
He said that there were no guarantees, someone could cometo Houston and do horribly in their trial..yet flourish through inductive treatment.
It all depended on the individual.

Per Jack’s advice as well…having him in his own environment; we felt was also important for his recovery… and for our family and his friends.

Only time will tell.

How is your dad doing on the clorfarbine?

[kami]

Jack,

If I can pick your brain as well…as you are the closest thing i have to an unbiased doctor.

We just found out last night that my dad’s MDS has transformed to AML…with 40% blasts in the marrow. Our options are the usual…inductive chemo at UCSF, or for him to fly to MD Anderson, and partcipate in one of 2 trials

1.)daco+vorinostat
2.)clorfarabine via IV

he is 76 and in pretty good shape…

Dr. Ravandi has made a point that there are no absolutes for any of these options as far as the response rates are concerned(some do really well and some don’t)…but they are very promising nonetheless.

He mentioned that induction therapy(if he’s in good shape) has a good outcome for many as well…i’m just worried about the physical toll it will take on him.

what do you think?

[kami]

Jack,

Thanks for the breakdown on vorinostat…is it fair to assume that it can make either the daco or 5-aza treatment more potent?
Being that my dad has already been on 5-aza, will that lessen the effectiveness of the Daco?
His doctor says no, but have you ever heard otherwise??

Also on a different note, my dad has had some really bad bouts with diarhea ever since he was on revlimid, is there anything he can take other than Metamucil?(a supposed “equalizer” in the intestine.)

[kami]

Jo,

I’m happy to hear that he’s doing well and responding …hopefully he’ll continue to do so FOREVER!!! or at least until something newer and better comes along.

I always try to pass these positive posts back to my dad.

FYI..our doctor had brought up using vorinostat in conjuction with daco, he mentioned that it seems promising…HOWEVER he also empahsized that it was not approved for MDS as of yet…

there is some limited literature if you google it, but I haven’t been able to grasp anything just yet…

For now we’re just hoping that his MDS hasn’t evolved to Leukemia…

k

[kami]

Has anyone done well on Dacogen???
My dad was on vidaza for about a year w/out a transfusion…then he was on revlimid for about a year and a half w/out any transfusions….(all the side affects were pretty manageable)

His doc put him on Thalidomide in Jan…and that did not work at all.We did another BMB las week due to the fact that his counts had dropped significantly and because his transfusions are now weekly. We are considering doing Dacogen…provided that his disease has not progressed to Acute Leukemia…doc says that he doesn’t see any Leukemic activity under the microscope…so we’re hoping for the best, but we’ll definitively know when the biopsy comes back.

does anyone know anything about VORINISTAT??

[kami]

Hi Cheryl,

I happy to hear that your dad is doing well.(I love hearing the positive stories…we NEED MORE OF THEM.)

There is also a trial for Clorfarabine at MD Anderson, that starts in about a month(I think)
How is the chemo administered to your dad…I thought I read that it was oral…is that correct? They just recently put my dad on Thalidomide at 50 mgs…but his MD mentioned that he was in contact with the lead doctor in Houston for that trial, and that my dad was eligible for it.
The only problem is that he has to fly to Houston and stay there.(Which my family is not very comfortable with.)

Either way, it’s very early to see how he does on the thalidomide(and his dosage is very low,so we’re waiting to see how he responds to the medication.) I wonder if this would be an option in the future.

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