Such good results

[PattiDean]

I have a concern and I am not sure how to ask about it. My husband Dean just completed his second cycle of Dacogen on Friday.

Prior to this,after his first cycle of Dacogen he was admitted to the hospital on July 17, with very low WBC and platelets. Dean's doctor gave him blood and platelet transfusions, along with antibiotics since his WBC was so low. When admitted to the hospital, Dean's WBC was 0.3 and his platelets were 3. His HGB was just over 8.

While in the hospital, Dean also began receiving an injection of Neupogen everyday for two weeks. The last injection was last Friday, August 3. On Wednesday, August 1, Dean received his last transfusion of 2 units of blood, and 4 units of platelets. Dean's counts didn't seem to be recovering, but finally on Thursday, August 2, there was an increase, his WBC was 1.5 and his platelets were over 60 and climbing.

Monday, August 6 he began his second cycle of Dacogen and everyday his counts increased. On Friday his WBC was 6.7, RBC 3.34, HGB 9.8, PLTS 180.

I know I should be jumping for joy, but it just seems to good to be true. Has anyone heard of someone having this good of a response after just two cycles of Dacagon. I should mention that Dean's counts began to improve before this second cycle, why he was receiving the Neupogen injections.

Dean's diagnosis the end of June was RAEB-t, with 17% blasts. Now we are being told he is in complete remission and may not need to complete the Dacogen treatments. The doctor said he doesn't see anymore blasts. Would the blood work show that, because Dean has not had a second BMB.

The doctor is putting Dean on Revliimid, other than that he isn't saying much more.

I liked Dean's doctor at first, but I am beginning to realize he doesn't tell us very much, just goes over everything real fast, it is making me feel uneasy.

Should Dean get another BMB? Has anyone heard of someone stopping Dacogen after just two cycles? Can someone have complete remission so soon?


This is all so new to me, and I may be worrying for no reason. Please forgive me.

I guess I just want to know if it is possible to have a remission so soon and should Dean have another BMB. Also is it wise to stop the Dacogen after only two cycles?

Thank you for any answers you can give me. I just don't feel comfortable with the doctor at the moment, he isn't answering my concerns, seems to just want me to accept the fact that Dean is in remission.

[Birgitta-A]

Hi Patti,
As far as I understand most doctors will continue treatment with Vidaza and Dacogen as long as the patient is responding. I am not sure if this really is the best treatment because when these drugs stop to work the patient has to very soon start another treatment because the counts will decrease fast.

Here is an abstract about Dacogen (decitabine). As you can see 91.4% of the patients demonstrated some kind of improvement by cycle 2 in this study:
https://www.eventure-online.com/even...ongressId=5650
Kind regards
Birgitta-A

[PattiDean]

Thank you Brigitta-A, you always have so much information to share.

I am not sure, do you agree with stopping the Dacogen after only two cycles?

Patti

[Al's Wife]

Patti,

There's a part of me that wants to say rejoice in this news and be thankful. But the other part says, I'd like a second opinion, please. Since you and Dean live fairly close to Tampa maybe you could make an appointment to see one of their MDS doctors.
Like Birgitta I always thought if the Dacogen was improving the numbers you stayed on the treatment.
I might even be questioning whether the diagnosis was wrong or something. In any event, for peace of mind, I would want another opinion. But that's just me.
I mean, look at us, we've been to four different hospitals and if this trial at Moffitt doesn't work and if Moffitt has no other trial to offer, we'll find another one that hopefully will.
Before deciding on Moffitt for this latest trial, I sent emails to doctors at Cleveland Clinic and Sloan Kettering as well as to the doctor we saw at M. D. Anderson last year. I received responses from all of them who indicated they would be willing to evaluate Al.
I'm constantly checking for new trials.
Try to enjoy each and every day with Dean. I know you are concerned but don't miss out on this time with him while things are going good. Just pray about it and hopefully you will find some peace of mind.
Lots and lots of hugs,

[slip up 2]

Patti
Do you know what Chromosme is involved with Dean's MDS ?

[Greg H]

Hi Patti,

First, congratulations on Dean's fantastic response to Dacogen. I am truly happy for you guys.

Like Birgitta, I have the impression that, normally, you continue with the Dacogen or Vidaza until it quits working.

It is possible to see blasts in peripheral blood, though usually, in the context of MDS, we are talking about seeing them in the marrow.

Remember, I'm not a doctor, just a guy who has read a lot of stuff above his pay grade. And this is a bit long and involved, but bear with me.

But, I think the problem here is the word "Remission."

That's a word from the world of cytotoxic chemotherapy -- what is properly called "chemo." Now, some patients, nurses, and even doctors will call Vidaza and Dacogen "chemo." And, of course, it is a chemical that you are putting into your body to try to control a kind of cancer.

But the more proper use of the term "chemo" in the world of cancer treatments, refers to cytotoxic -- "cell-killing" -- chemicals. The idea is to find a chemical that will kill fast-growing cells -- like cancer cells -- and not the rest of the cells in the body. Of course, some other cells in the body grow fast, too -- like hair and mucus membranes. That's why folks who have cytotoxic "chemo" for their cancer lose their hair and get sores in their mouths; the "chemo" is attacking the hair and mucus membranes along with the fast-growing cancer cells. These are the same kinds of drugs that are used prior to a bone marrow transplant, to kill off the fast-growing cells in the bone marrow.

So, folks with breast cancer or colon cancer -- or even acute myeloid leukemia -- are given this kind of chemo. It kills the tumor or the leukemia cells, the symptoms go away, and the cancer is "in remission." Often, the cancer sooner or later comes back, because the Chemo didn't get all of the cancer cells, and they stage a new attack. A lot of the early trials with cytotoxic chemotherapy involved figuring out how much and how many poisons the docs could give people without killing them, in order to wipe out as much of the cancer as possible.

So, that's true "chemo." "Cell-killing," that's the key.

As I understand it, this is not how dacogen and vidaza work. They don't actually kill the defective stem cells that are messing up blood production. Instead, they change the environment in the marrow in a way that messes with chemicals in the stem cells -- methyl groups -- that are involved in switching on and off various genes. I'm honestly not sure whether they turn off the bad cells, or just get them to clean up their act. But I'm sure they don't, in fact, kill those bad cells.

Most cytotoxic chemo just goes after fast-growing cells. But all the cells in the bone marrow are fast-growing; they have to be, to churn out the trillions of blood cells you need to stay alive. There is research out there to find targets other than growth rate and develop cell-killing drugs that would target MDS and leukemia cells and kill them, but Vidaza and Dacogen aren't those drugs.

So, "remission" is really not a useful word when talking about Dacogen and Vidaza. Real "chemo" actually kills cancer cells (though it doesn't get all of them, which is why we have relapse). Vidaza and Dacogen change the chemical environment in which the bad cells live, altering their "behavior" without actually killing them. Take away the drug, the chemical environment goes back to normal, and the MDS comes back.

You can see why it's tempting to talk about "remission" and "relapse" in MDS treated with Vidaza and Dacogen -- we are all familiar with those words from the world of solid tumor cancers. But we're really dealing with drugs that operate in very different ways.

That was a very long way of saying that I'm really skeptical about stopping the Dacogen. On the other hand, your doc is planning to use Revlimid, and he's a doctor, so he's bound to have some reason for that. And maybe that reason over-rules the general rule of thumb to stay with the Dacogen 'til it stops working. But he should be willing to explain all that to you.

Echoing Slip Up2, does Dean have an abnormality on Chromosome 5? That's the usual indication for Revlimid.

Echoing Linda, I think it's now time to make that trip up to Moffitt and get that second opinion from a real expert.

Take care!

Greg

[PattiDean]

Dean Linda and Slip UP 2,

Thank you for your replies.

Linda, I am also questioning in my mind if Dean was diagnosed correctly. I am becoming upset because the doctor doesn't seem to ever answer our questions. He gives us short answers and has never gone over the results of the first BMB that was done in the hospital when Dean was told he had MDS. All this doctor did was write down RAEB-t on a piece of paper and told us this is what Dean had, then he wrote 17%, and said that was the percent of blasts. When I asked what blasts were, he told me not to worry he was going to take care of my husband.

Dean and I have been so physically and emotionally overwhelmed these last six weeks, going to the doctor, going for transfusions, and being in the hospital, that we were just happy to have a doctor taking care of everything, while we concentrated on Dean's health. Now that Dean is improving, we are beginning to realize that this doctor is not giving us information, he just makes statements and wants us to accept what he is telling us.

I did ask if other people have had such a good response on their second cycle of Dacogen, and he just said, "only Dean matters, no one else". That didn't exactly answer my question.

I have talked to Dean and he agrees that he is now having an uncomfortable feeling with this doctor, and maybe we should think about seeing someone else, or as you suggested, contacting Moffitt since it is so close.

Slip up 2, we have no idea if any chromosome is involved, we were never told. I will definitely be asking the doctor on Tuesday.

Thank you again to each of you for your advice and helping Dean and I deal with all of this. My mind is racing, on one hand I know we should be happy, on the other, I don't have a good feeling about what we are being told.

I guess if I knew other people had this type of improvement in two cycles of Dacogen, and their treatment was stopped, I would feel better. It just seems too early to stop Dacogen, and too early to know that Dean is definitely in remission. Am I wrong? Can a doctor know if someone is in remission without doing another BMB?

[PattiDean]

Wow, thank you Greg. I learned more from your post than I have learned from our doctor in six weeks!

The doctor did use the term remission on Friday because Dean's counts were so good, and then said he didn't think Dean had to continue the Dacogen treatment. Both Dean and I had an uneasy feeling when the doctor told us that. Dean's blood counts began improving even before he began the second cycle of Dacogen, which has us confused.

We are still keeping the appointment with this oncologist on Tuesday, but both Dean and I no longer feel comfortable with this doctor and have decided to seek a second opinion. Hopefully we will find a doctor that will be more open and willing to discuss and answer our questions and concerns.

We knew that Dacogen wasn't chemo from what we have read on these forums, but didn't think about that when the doctor told us Dean was in remission.

Also, the doctor never did take the time to tell us how Dacogen works. From your explanation, it sounds like Dean should continue on the Dacogen, along with the Revlimid, which is what the doctor was going to do from the beginning. Now that Dean's counts have improved, the doctor is saying he wants to discontinue the Dacogen, and just have Dean on the Revlimid. Hasn't told us why though, that is something that should be discussed.

Thank you so very much Greg for taking the time to explain chemo and Dacogen and all your help whenever we have a concern.

[slip up 2]

Patti...

Make your notes for the Dr. don't forget they are dealing with many patients with MDS and you are dealing with the one you love, and always, always get copies of all of the results....and keep your own charts of all the counts, get CD copies of all X-Rays and any other tests that are done....you will need these down the road.

This is where it gets tough...you have to be an advocate for Dean, you have to know the answers...it will be difficult at first, but the more confident you become the easier it will be, and the more you will understand..and this forum is always batting a 100%, so use it no matter how odd you think the question..

Your Dr. is right everyone with MDS is different, and every drug re-action is different.

[Birgitta-A]

Hi All,
Remission has nothing to do with the kind of treatment the patient is receiving - only with the response.

Here is a report from IWG (International Working Group) with the criteria:
http://bloodjournal.hematologylibrar.../3671.full.pdf

At page 3 you will find the criteria for Complete Remission:

Complete remission (CR)
Bone marrow evaluation: Repeat bone marrow showing less than 5% myeloblasts with normal maturation of all cell lines, with no evidence for dysplasia.* When erythroid precursors constitute less than 50% of bone marrow nucleated cells, the percentage of blasts is based on all nucleated cells; when there are 50% or more erythroid cells, the percentage blasts should be based on the nonerythroid cells.

Peripheral blood evaluation (absolute values must last at least 2 months)â€*: Hemoglobin greater than 11 g/dL (untransfused, patient not on erythropoietin) Neutrophils 1500/mm3 or more (not on a myeloid growth factor) Platelets 100 000/mm3 or more (not on a thrombopoetic agent)
Blasts, 0%

No dysplasia*

Dean's doctor can tell you that Dean is in remission but without a BMB and observation during at least 2 months the response is not evaluated according to the Interational Working Group criteria.
Kind regards
Birgitta-A

[Al's Wife]

Patti,

Isn't Greg the greatest!!! He has taught all of us so much about MDS. And I totally concur with Birgitta (she is brilliant also) and slip up 2 was so right - YOU HAVE TO BECOME DEAN'S ADVOCATE! Sorry, didn't mean to yell!
If I have learned anything in these two years and three months, it is that I have to scrutinize EVERYTHING, because doctors, nurses, and hospitals do make mistakes.
And slip up 2 is so right, you need to get a copy of all Dean's labs and his bone marrow biopsy report. I keep all of Al's and take them with me each visit. That way I can compare them when they hand me the new one.
There should be no problem with the doctor's office or hospital giving you copies, you just sometimes have to ask - or maybe in Dean's case - demand.
I do hope that Dean will decide to go to Moffitt or at least somewhere else. If nothing else it might ease your mind to have another opinion.
Good luck and God bless. Try to enjoy the rest of the weekend.
Hugs,

[PattiDean]

Thank you Slip up 2. I have been asking for copies of all of Dean's blood work, and I am keeping records of his transfusions, dates and how many units. I never did ask for a copy of the first BMB, will do that on Tuesday when Dean has an appointment with the oncologist. Hopefully he will go over the results from the BMB at that time, since the doctor has not done it to date.

Thank you Birgitta-A for the information about remission. You answered my question about having a second BMB before determining Dean is in remission. I guess that is what is bothering me, that the doctor is saying Dean is in remission based on his blood counts during the last week and wants to discontinue the Dacogen.

I am going to ask about a second BMB when we are in the office this week. I want to base Dean's remission on more than just his blood counts. It still just seems to be too soon.

Thank you again to everyone who has replied to my thread and is helping me with your kind support and suggestions. You help more than you could know.

Patti and Dean

[Greg H]

Originally Posted by Birgitta-A

Remission has nothing to do with the kind of treatment the patient is receiving - only with the response.

Hey Birgitta!

Excellent! Of course I should know that the community does in fact talk about "remission" in the case of MDS. I was so caught up in trying to make the distinction between cytotoxic chemo and the MDS therapies that I blew it on that one.

Thanks for keeping us all straight.

Take care!

Greg

[Birgitta-A]

Hi Greg,
MDS therapy is really very complicated - I suppose that depends on that we have different diseases with some signs in common.

The epigenetic drugs like Vidaza and Dacogen (hypomethylating drugs) or Zolinza (HDAC = histondeacetylase inhibitors) are now in trials for many types of cancer not only for MDS/AML. Then many MDS patients receive "strong" chemo for example if they will get a SCT.

Your own treatment with Danazol is another example of a special treatment for the quite uncommon type of disease you have.
Kind regards
Birgitta-A

[gramous]

hi patti,

I'm happy for the imrovement in dean's results, it is a very good news but now you must see the future....your doctor has done good job but it is necessary to have a dialog with him... and it is also sure the time for a second opinion.
your doctor must answer to your questions: ity is the basis of confidence !!!! and more: it is your right of patient....

for helping info about: I've read the book anti cancer (doctor david servan schreibber) and it is very usefull for daily life (diet, supplement,way of life,...) and we do also mindfulness (john kabatzin). these things help a lot.

For medical info: If dean is 5q- mutted, it is comprehensible for revlimid.... but for other application, There are tests now I think but efficacity is not demonstrate(some results for low risk? I'm nor sure)... I don't see why dean must dacogen stop.

I pray for you,
sorry for my bad english,
béné

[Greg H]

Originally Posted by Birgitta-A

The epigenetic drugs like Vidaza and Dacogen (hypomethylating drugs) or Zolinza (HDAC = histondeacetylase inhibitors) are now in trials for many types of cancer not only for MDS/AML. Then many MDS patients receive "strong" chemo for example if they will get a SCT.

Hey Birgitta!

I read a article the other day about trial of Vidaza and Dacogen for other cancers. I gathered from the article that these drugs were once used as "strong chemo" and proved to be too strong. Then someone got the bright idea of using a much reduced dose for MDS. Since that worked, the researchers are now trying the reduced dose idea with other cancers.

And, of course, some folks still get induction chemotherapy for MDS (even outside of transplant), though I gather that is increasingly uncommon.

What I was trying to get at in my flawed post was exactly the distinction between the epigenetic drugs and the cytotoxic drugs (without using too many big words). My thinking is that the cytotoxic drugs actually reduce the population of cancer cells or clones, whereas the epigenetic drugs don't eliminate them, but simply change the way they are functioning. Take away the drug, and the malfunction returns. Does that seem right to you?

Take care!

Greg

[PattiDean]

Hi Bene, thank you for your reply. I don't know if Dean is 5q-mutted, these are the things that the doctor never tells us. I am finding out now there is so much that Dean and I do not know, and many things the doctor is not telling us either.

Almost two months ago the doctor told us Dean had MDS - RAEB-t, with 17% blasts. Now after two cycles of Dacogen he tells us Dean is in remission. His counts have improved dramatically over the last week, it just seems like too much too soon. The doctor seems to be basing Dean's remission on the blood counts, and the fact that he is saying that he wants to stop the Dacogen and just give Dean Revlimid, and yet not give us any explanation, concerns me. He is also saying that Dean no longer has any blasts. Can he know that without a BMB?

Greg, I understand what you were trying to say about the drugs for MDS and other cancers, you gave me an excellent explanation on how they work, something our doctor has never told us. I greatly appreciate the time you spent writing about the differences for me and helping me understand how Dacogen works.

Thank you Linda for your reply, I know that you and Al are dealing with so much right now. I have copies of all of Dean's blood work and keep a record of his transfusions, but I have never received a copy of his BMB that was done in the hospital by his doctor. Hopefully that will change this week when we see the doctor and I know now there are a lot of questions I have to ask regarding the results of this BMB.

Thank you to each and everyone of you for being there for Dean and I and for all your support and suggestions. You have helped more than you could possibly know. Thank you!

[milliken2]

Patti;
First off - if your Doc won't discuss results with you or doesn't have a decent 'bedside manner' - then maybe you should look for another Doc - and again - like I told you in an earlier post - keep a journal - or notebook with all of Dean's lab work, test results, etc. Your medical records are your own - and you have a RIGHT to a copy of any of them, including the BMB results which you should have also.
As far as the Dacogen goes - this is the way the hema/onc explained it to us when we were in Florida. "You live in a decent neighborhood. (Your good bone marrow) Then the 'hooligans' invade your neighborhood (the MDS blasts) You call the police in (the Dacogen) and they start to keep the hooligans in line. You call more police in - (continued Dacogen therapy) and the hooligans disappear. But, when the police stop - the hooligans come back. We were told that Earl could never actually stop the therapy - but so far it hasn't worked for him at all. You might increase the time between treatments - but you can't stop completely - or the MDS will come back. I know it is a simple way to explain in - but the Doc really did a good job with us. I just wish we were back there for Earl.
You can also record your Doctor's visits - this way, you can review what he did or did not tell you.
Earl can't take Revlimid as one of the side effects is blood clotting, and Earl has APS (sticky blood - also called Hughes Syndrome). But, with his low platelet count - he hasn't received any blood thinner - except when they found the clot that I told them he had in his right arm. Even then - he only got it for about 5 days, as the platelets dropped to 10,000.
I wish you both much luck - but NEVER be afraid to ask the Doc questions - you have a right to answers about your husband's treatment.

Beth

[maria&lola]

Chiming in to agree here...my mom's first doc was just okay, but we felt like we were being hurried through the appointments, spending an hour in half in the waiting room for 5 mins with the doctor. It was also like he was just reciting his notes from the previous visit without ever really getting to know her. She was just another file.

My mom felt guilty or that it was unethical to switch and maybe it was a bit awkward because she chose another doctor in the same practice, in the same office but it was the right move. Her current doctor seems genuine and caring, he listens to her, takes time explaining everything and even holds her hand when they talk. He's funny too and adds a little levity to help break what would otherwise be such a somber and clinical experience.

Good luck and I hope Dean continues to improve!

[Birgitta-A]

Hi Greg,
Yes, Vidaza was initially used in very high doses that gave severe nausea.

Epigenetic drugs like Vidaza
Here dr List tries to explain how hypermethylation (too many methyl groups) leads to tumor suppressing gene silencing. http://assets.aamds.org/pdfs/ListHighRisk.pdf

Chemo like Cytarabine
“Cytarabine belongs to the category of chemotherapy called antimetabolites. Antimetabolites are very similar to normal substances within the cell. When the cells incorporate these substances into the cellular metabolism, they are unable to divide.� http://www.chemocare.com/bio/cytarabine_liposomal.asp

As far as I understand you are right when you write that chemo reduces the population of cancer cells and epigenetic drugs change the way the cancer cells are working. Sooner or later both types of drugs stop working and we have to try something else.
Kind regards
Birgitta-A

[PattiDean]

Good morning Beth,

What a terrific explanation about the hooligans! It does make it easier to understand, and actually makes it not seem as scary. Thank you for sharing it wth me Beth!

Also Maria and Beth, thank you for giving Dean and I the support we need in dealing with our current oncologist, and knowing we are not alone, others have also had to deal with the same situation. Dean, at first, was very happy with this oncologist, but the last few weeks have made him realize that this doctor does not want to share any knowledge of this disease with us, he just wants us to "trust him". That is making both Dean and I uncomfortable, and we have so many questions that are unanswered.

Everyone who has been kind enough to reply to this thread has been very supportive in advising us to begin looking for a new oncologist, and it has made Dean and I feel better about making that decision.

Thank you Beth, Maria and all who have answered my thread and taken time from your busy days to share your knowledge and suggestions with us.

[PattiDean]

Thank you Birgitta for the interesting links, although I don't always understand everything I am reading.

You always are here to share your knowledge with everyone, thank you!

[Al's Wife]

Patti,

When we made the decision recently to change our local oncologist, we weighed the pros and cons and made the decision to change, and we are glad that we did. Our original oncologist (the one who first diagnosed Al on 5/26/10) had always been caring and supportive up until we made this last decision to go to Moffitt. But after we went to Tampa, it seemed like all our contact was through the nurse and we were never able to talk with the doctor directly.
I am glad that we made the change and hopefully if y'all decide to do the same, you will be comfortable with the decision.
I think a lot of people on this forum have sought second opinions.
And you can always go back to your original doctor if you feel the need.
Hope Dean is continuing to feel good.
Take care,

[kgtuck]

May I interject my "2 cents" here. Patti, my counts also came up pretty quickly (3 months) and my doctor has not once used the word "remission". My understanding is that you continue on dacogen or vidaza to keep your counts stabilized so that you become "transfusion independent" and no longer need procrit, neuprogen, etc. Now that my blood counts are pretty stablized except for "grans", my doctor is very conservative about changing schedule or dosage. But, she has, however, agreed to space out my schedule to 4 weeks off, and then 1 week of treatment, this is after 3 years of treatments. My understanding is to stay on this type of drug as long as it continues to keep your bloodwork stable.

On the other hand, each MDS patient I have met in my support group and from those here online, everyone is different, either in their subtype, chromosomal abnormalities, %blasts, age, other health issues, etc. Good to always get a second opinion if there are any doubts.

Good luck to you and your husband!

[Sally C]

Hey Patti,
I think it's wonderful that you have gotten so much informative feedback to your questions. All the knowledge gained here should give you lots of info to talk to your doctor about.
Forgive me for hijacking this thread for a moment, but having read what everyone has to say about stopping treatments I have a question.
Since my husband Don has been taken off Promacta due to his platelets staying over 100,000 (for fear of clots), would it be possible that his counts could stay up? They dropped to the 80,000's at first but went up to 99,000 last CBC. I know Promacta is uncharted waters but I thought someone may know enough about MDS to give me some insight. NIH will start him back on it if his platelets drop to 50,000. He is currently on no MDS medication but is on 15 to 20mg/day of Predisone due to ulcerative colitis.
I wish everyone well who may read my post.
God Bless,
Sally