New to forum, dx mds a week ago

[PattiDean]

I am not exactly sure what to write and in reading some of the threads, I am confused by different abbreviations that are used.

In February of this year I had my usual 6 month check up, everything was fine with my blood work, or so I thought. I rechecked my lab work after finding out my dx, and my platelets were low 101.0 at that time, but my doctor didn't seem concerned at the time, and all my other counts were within limits, so all of this came on suddenly.

Last week I found out I have MDS - RAEB-1. I have already received transfusions, my counts didn't change, and next week begin injected Dacogen along with pills. I will receive the injections for five days, then off for three weeks. After four months my oncologist says I will have another BMB to see if my counts are improving.

On Thursday I will have blood drawn to see my counts, then have a transfusion on Friday before I begin chemo.

I am not sure about what numbers matter in my blood work but these are the ones the doctor gave me.

Platelets: 24
WBC: 1.1
RBC: 2.97

What other counts should I ask for. What questions should I ask. The doctor did request a home health aide and hospice.

I am 75 years old, had triple bypass in 1998, kidney cancer in 1988, no chemo, but only have one kidney that is fine. I also have mild cognitive memory impairment.

Thank you for any help you can give me. My wife and I are facing this alone, no siblings or children to turn to, and we have no idea about what questions we should be asking. I am afraid.

[Greg H]

Hey PattiDean!

Welcome to the forum! I'm real sorry to hear about your diagnosis; it's hard to believe sometimes how quickly MDS can come on. It's great that you found marrowforums, because there are a lot of great, supportive (and knowledgeable) folks who participate in this forum.

In terms of learning about MDS and your treatment options, have you checked out the AA&MDS International website? They have plenty to read online, and will also send you printed materials about MDS. Their online learning center is incredible, with lots of webinars and presentations you can watch.

Your counts are pretty darned low. What's generally of greatest concern are the whites and the platelets. With low whites, you are open to infection, and low platelets can cause both bruising and internal bleeding. I've observed from reading about other folks on this list, that platelets seem a little different for everyone. Some folks will start to have problems at your 24 platelet count, but other folks seem to be able to get down to 10 before they have problems.

With WBCs at 1.1, you will need to take precautions about infection. Good hand washing, no hanging out with folks who have colds, etc. If you are a gardener, be sure and wear gloves when messing about in dirt. You might want to ask your doc if you need to be on a prophylactic antibiotic to avoid infection or take any other precautions. MDS doesn't actually kill too many people; instead they get pneumonia or some other infection and that does them in.

The counts you have are good ones to look at. I usually look at hemoglobin (HGB) which shows the oxygen-carrying capacity of your red cells, and I like to look at absolute neutrophils (ANC), which are the bacteria and fungus fighting part of your white blood cells.

You are going to have a lot of Complete Blood Counts (CBC) going forward. I'd suggest getting your doctor's staff in the habit of giving you copies of these (they are your records and belong to you under federal law), so you can make a binder full of them. That will help you track your progress.

The Dacogen your doc has prescribed is a standard course of treatment for RAEB-1, though it may be a little more common to try a similar drug called Vidaza. They both work in similar ways. These are not "chemo," in the sense that they won't make your hair fall out, but they are strong drugs that will probably make you feel pretty lousy part of the time. They will also probably reduce your counts before helping them, so you may be looking at more frequent transfusions, including some platelet transfusions.

The standard is to have six months of Dacogen or Vidaza before deciding they didn't work, so don't let your doc stop after four months.

There are lots of great docs in Florida. Since MDS is pretty rare, a lot of patients like to get a second opinion from an MDS specialist (as opposed to a regular hematologist). The folks up at Moffit in Tampa are among the leaders in MDS research, if you want to get a second opinion.

If you have any trouble understanding abbreviations or anything else, just ask here. It's a great group of folks, many of whom are facing just the kind of battle that you have in front of you.

Good luck to you.

Greg

[Greg H]

PattiDean,

I forgot to ask. Did your BMB show that you have any chromosomal abnormalities? That can sometimes affect treatment decisions.

Take Care!

Greg

[PattiDean]

Thank you Greg for your reply, it meant a lot to me and makes me feel less alone. I didn't know where to turn for support and questions, so I am happy that I found this forum.

I am fearful because my numbers are so low and it happened so rapidly. I am on an antibiotic for fungus infection. I take two other medications for my heart and one for my memory.

The doctor told me my hair will fall out, but even if it does, that is okay, I don't have very much. Other than that, I don't know what to expect from the Dacogen. My doctor is an oncologist, and he told me that my treatment is chemo. I am not sure how I feel about the doctor, he doesn't want to give me a lot of information. I asked him about Moffit, since I am not too far away, and he told me I don't need to go there, he would take care of me.

My wife and I have decided that we may contact Moffit anyhow, but right now I have been through so much this last week I just want to have a break, I feel so overwhelmed and scared.

Thank you for telling me about getting my CBC's, I knew that, but going through this, my mind has turned to jello and I had forgotten. I wasn't sure what numbers were important, so now I have an idea.

The oncologist never mentioned any chromosomal abnormalities, should I ask him the next time I see him, or would the doctor have told me already?

I am fearful because my numbers are so low, what will happen when I begin Dacogen. It also frightens me that the doctor wants Hospice, but he told me it is just for support because my wife and I are alone.

I am wearing a mask full time, but yesterday the doctor told my wife and I to go out and have dinner before I begin treatment and take in a movie. I worry about infection, but I also want to have a nice memory to get me through what is ahead.

Part of me feels like I am not going to make it through this, that my days are numbered, and when I go there I can't stop crying.

Thank you again Greg. My wife may get on the forum if I am too sick and unable to do so. She is new at this also, but I know she is going to need support helping me through this. I think this forum will help her, so I am happy I found it.

I went to the AA&MDS website and requested the information you suggested. I am going to look at the website after I send this post.

Thank you again for your reply, it did help more than you can imagine. I am not sure if I know all the right questions to ask, or the proper way to ask them, but at least I do have a place to go when I need an answer. Fear of the unknown is overwhelming.

[Sally C]

Hi PattiDean,
I think everyone on the forum knows how you are feeling. My husband's MDS came on quickly as well but it took 6 months and going to the National Institutes of Health to get a diagnosis in March of '09.
As time goes by you will learn more and more, the shock will wear off and you will get somewhat used to living in the world of MDS.
You have come to the right place for information and support. This is a wonderful forum. The people are informed, compassionate and have been where you are now. And all are more than willing to help as much as they can.
Keep the faith and God Bless,
Sally

[Greg H]

Hey PattiDean!

Apologies on my assurance that your hair won't fall out; I checked the Dacogen side effects, and, sure enough, hair loss is one of them (I have to admit, that's not much of a concern for me either; I'm not quite a cue ball, but I am pretty bald on top.) Lots of folks do call Vidaza and Dacogen "Chemo," so no worries on that score either.

Since you guys are kind of isolated down there in Clearwater, you might want to consider checking in with the AAMDS folks about a "Community of Hope" they are trying to organize in the Tampa/St. Pete area. They already have these local support groups up and running in other areas, and are trying to start one in your area. It could be a great chance to meet real live people who are fighting the same fight. You can call Community Development Manager Martha Crews at (301) 279-7202 x103 or email her at crews@aamds.org to let her know you are interested.

You will probably have to ask for a copy of your BMB results to find out about the chromosomal abnormalities. It's in a part of the report called Cytogenetics. If you can't figure out how to read it, either I or someone else here can help. You can also ask your doc, to see if he'd like to elaborate on the findings.

I'm a little concerned about your description of your relationship with your doc. I think anyone on this forum would tell you that you need a strong, positive relationship with your oncologist, with plenty of open communication. MDS can be a hard road, and an uncommunicative doctor doesn't make it any easier. You may have to have a firm talk with the young man to get his head screwed on straight -- or go find yourself another doc.

It scared the crap out of me and my wife when I was diagnosed with MDS. But I put on my hip boots and waded into the information about the disease, and, as I learned more, I began to understand that it's a complicated disease with lots of unpredictable twists and turn, but lots of folks manage to live quite a while with it.

Good luck to you!

Greg

[kris]

You are not alone. Good that you reached out to this forum. Everyone is a good listener and full of information.

Your location is perfect for treatment Moffitt cancer center which is part of the MDS Consortium is in your back yard. Have your Dr refer you or you can self refer. They are wonderful, caring and encouraging. They can help walk you thru the process of diagnosis and treatment options.

Prayers for you and your wife.
kris

[Al's Wife]

I agree with what the others already have told you. My husband was diagnosed with MDS a little over two years ago and I really don't know where I would be without the support of this forum. So far we have been to our regular oncologist, Emory (we live in Georgia and Emory is here), M. D. Anderson in Houston, NIH in Bethesda, Maryland; and next week we are scheduled for Moffitt in Tampa. My husband has been through Vidaza and two clinical trials with no improvement, so we are hoping Moffitt can give us some other treatment options.
I would definitely recommend that you at least seek another opinion; and since you are in Clearwater, I think Moffitt would be a good choice. Even though we haven't been there yet, the new patient personnel are very helpful in setting up an appointment and letting you know what you need.
Please, please ask questions and if you want to talk with someone, I'm sure any of us would be glad to give you our phone number. Just send us a private message up at the top of the page and give us your number or ask for ours. There are some great people on this forum and many of them are as knowledgeable as our doctors. But I would advise you be careful on reading about MDS online as many of the sites are outdated and can really scare you. So many advances have been made in the last few years. Please don't give up and remember all of us have felt the fear you are experiencing. God bless you and your wife.

[PattiDean]

Thank you Al's wife, Kris, Sally and you, Greg, for your kind support during this time of fear and especially for all of your help in what I should or should not do. So much to learn about this journey. How do you get through each day?

My diagnosis is beginning to be a reality now, I can't pretend that it is just a bad dream. I was so overwhelmed when I wrote my first post this morning, but seeing your replies this evening has helped me feel less alone, other people are going through this with me.

Hey that's okay about the hair Greg! Thank you for telling me to get my BMB results, I would have never thought to ask for them. I might not be to sure what I am looking at, so expect a lot of questions.

I guess right now it is hard to have much of a fight inside of me, I am so very tired all the time. My wife and I do want to get in touch with Moffitt, but I want to get the first week of my treatment behind me. I only found out on Friday about the MDS. There is so much to learn. My wife has been trying to do some research, but she also has to take care of her 89 year old mother, and now is worrying about me.

You have given me so much information Greg. I will check into the Community of Hope and get in touch with Martha Crews. Thank you for the heads up on that, I like the idea of having a local support group with people going through the same fight.

Can anyone give me an idea what to expect from the rounds of treatment. I am so fearful of what is ahead.

Al's wife, please let me know what happens in Moffitt. We will be thinking of you and keeping you in our prayers.

Again, thank you to each and everyone of you for your compassion, support and understanding, it has meant a lot to me. Good night.

[PattiDean]

I forgot to add, I see all this information about your journey through this disease in your posts and it looks like a foreign language. When will I understand what I need to look at and what is important in the understanding of what my body is going through.

I remember my oncologist telling me about 17% blasts. I have been trying to read about them in my research and everything I read is telling me that is not good.

[milliken2]

Patti;
From what we have been told, and what I have seen - the bone marrow biopsies can differ greatly depending on the pathologist who reads them. Earl has had 4 Bone Marrow Biopsies (BMB), and no 2 pathologists have given us the same reading when it comes to blast counts. We were seen at Moffitt this past February, and I would highly suggest that you see someone there. We saw Dr. Jeffrey Lancet - and they did a BMB there - under anesthesia - and Earl said it was the best one he has ever had - since he didn't feel the pain. There is a young man there - Josh - in the appointment making area - and he is great - he will try and get you in as soon as he can. A mans normal hemoglobin(the part of the red blood cells that carry the oxygen to your body) is in the range of 13-17. If I can get Earl above 9.0 - I do a happy dance From the middle of August up to last Friday - he has received 152 units of blood - and when he is on his chemo week, I can guarantee you he will get 2 transfusions of 2 units each. Normal platelet (plt) level is between 130,000 to 150,000 - and again - he is usually somewhere between 17,000 and 50,000. But he has gotten down as low as 6,000. Like Greg said - the risk of secondary infection or disease is always a big problem. I have hand sanitizer in the car and in my purse - and I always use a paper towel (or toiloet paper if no towels are around in the public restrooms) to shut off the faucets and open the doors to leave or enter.
For certain - get a copy of all of your lab reports so that you have them for your own records, and also so that when you do see a different Dr - you will be fully prepared. I found out the hard way that making sure BMB slides are sent when you are seeing another Dr - that you REQUIRE the facility to overnight them, so that the Dr. you are seeing can confer with their pathologist. Moffitt was great about sending them to our hospital here in PA - but that hospital did not send them back after many requests from me - and when they did - they sent them in the 'regular mail' - and there was no trackng record of them. I had to have Moffitt recut Earl's slides and send those to the Cleveland Clinic where we saw Dr. Mikkahl Sekeres. Again - they had a different opinion of how many blasts were in Earl's system.
From what we have been told - below 20% is still considered MDS - above that level it is considered to be Acute Myelocytic Leukemia (AML)
I too, am fairly new to the forum, and happy that I have found it. People here are great. Again - if you want to PM anyone - and ask them their own telephone number - I am sure they will be glad to help you.
Good Luck - and NEVER be afraid to get another opinion. If I were you - I would have that appointment already made.
Beth

[Greg H]

Originally Posted by PattiDean

I forgot to add, I see all this information about your journey through this disease in your posts and it looks like a foreign language. When will I understand what I need to look at and what is important in the understanding of what my body is going through.

I remember my oncologist telling me about 17% blasts. I have been trying to read about them in my research and everything I read is telling me that is not good.

Hey PattiDean!

The lingo is pretty confusing, but you'll get the hang of it after awhile; just don't be afraid to ask any of us -- or your doc -- what the heck we are talking about.

I think most folks pay attention to a few key things in both their CBC (Complete Blood Count) and BMB (Bone Marrow Biopsy), depending on their symptoms and the general profile of their disease. So it varies a bit from person to person

On the CBC, I'm always curious to see four things:

- Hemoglobin (HGB), because my doc uses it to decide when I need a transfusion. But some docs use Hematocrit (HCT) instead.

- Platelets (PLT), because mine have been low in the past.

- Absolute Neutrophil Count (ANC or NEUT#) - these are the white blood cells that fight off bacteria and fungus. I look at this instead of the White Blood Cell (WBC) number, because I had a treatment that suppressed my lymphocytes (ALC) which are the white blood cells that fight viruses. Since those are still suppressed, my overall WBC number is always low.

- Absolute Lymphocyte Count (LYMPH#). Since these were suppressed by my treatment, I'm always watching to see how they are doing.

These are the four I follow right now, and I actually made a spreadsheet to track and graph them, so I can look at progress over time. It's amazing how much you think you will remember but forget anyway.

On a Bone Marrow Biopsy, (BMB) there are tons of numbers, and confusing language. Again, what to look for depends somewhat on your disease profile, but I always look at:

Diagnosis - Usually the pathologist will render a verdict on what you actually have, like Refractory Anemia (RA), or Refractory Cytopenia with Multilineage Dysplasia (RCMD), or Refractory Anemia with Excess Blasts (RAEB). There are a couple of different classification systems for MDS, so some pathologists will use one and some will use another.

Cellularity - The pathologist will usually make some comment about cellularity -- whether you have more, less, or a normal amount of blood producing cells in your bone marrow. What's normal depends on age; as we get older, the blood-making cells in the marrow are replaced by fat (yep, you even get fat in your bone marrow!) Most MDS folks have hyper-cellular marrow, but some have hypo cellular marrow -- i.e. fewer blood-producing cells than expected. Sometimes, a different therapy will be suggested for these folks.

Dysplasia - This can be hard to find or understand, because it's always written in a bunch of terms derived from GReek, like "megakaryocytes" and "erythroid," but the information in this part of the report describes which of your three blood cell lines are messed up , and how they are messed up.

Cytogenetics - This is an analysis of your chromosomes to see if any are defective. They actually grow out the bone marrow cells and look at the chromosomes under a microscope. If you have messed up chromosomes (which is pretty common in MDS) sometimes the therapy your doc chooses will be based on which chromosomes are messed up.

FISH - This is not always done, but it's a fancier way of looking for messed up chromosomes and each test targets one particular chromosome. Usually, this will just be done for a few chromosomes that have implications for treatment in MDS.

Blasts - These immature white blood cells are very important in MDS diagnosis and in naming us worry about whether we are moving toward AML (Acute Myeloid Leukemia). You are right that 17% blasts is not good -- 20% is generally the threshold at which the diagnosis becomes AML. On the other had, you mentioned you have been diagnosed with RAEB-1. RAEB-1 is 5%-9% blasts, from 10% to 19% is generally called RAEB-2. So, you might want to confirm that with your doc.

Unfortunately, the experience that Beth describes rings true for anyone who has had a lot of these tests: they can be maddeningly contradictory from test to test and pathologist to pathologist. This is science, but it ain't rocket science. So it's best not to get too hung up on the results of any one test -- even one BMB. You have to kind of watch things over time.

There's tons more stuff on a BMB that can be important for some patients. Fortunately, I haven't had to learn about those yet.

I hope that helps. Once you get some reports in hand, we'll be happy to help you figure out what they mean.

Take care -- and Happy Independence Day!

Greg

[Joan]

PattiDean; Some more words of hope. My husband was diagnosed with MDS when he was 76. He will celebrate his 81st birthday in October. Granted, all three blood lines were not affected for him. He has been very fortunate but he has only had supportive treatment, EPS, specifically aranesp shots every two weeks. His HgB runs between 9.5 and 10.3. He has gotten weaker over the past 7 years and sleeps a lot. Since you are in your mid-70s, I thought it might help to know of another senior citizen who is still surviving. I agree with the other posts. Not a fun disease and we all can relate to the fear. Do find a doctor you like, trust, and who will talk to you.

Joan

[PattiDean]

Hello Joan Greg and Beth,

Dean isn't writing today, his spirits are very low today, so I am going to post. Please forgive me, like Dean, this is all new to us, we only got the dx on Friday, so it has been 5 days.

Since the dx Dean has been trying to be strong, although I know he is so scared. Today has been a really bad day, he keeps saying he doesn't want to leave me, and he is afraid he will be a burden. I tell him over and over again we are in this together, it will be our fight, I don't want to tell Dean that I am also afraid.

I am glad that Dean found this forum, it is more helpful and supportive than other information I have been finding online. Because I also care for my 89 year old mother, I am feeling overwhelmed, I can't give both of them my complete attention, my mother needed me today, and I had to leave Dean when he was at a very low point. When I was in the car going to take care of my mother I just broke down and cried, but at least no one saw me doing that, I can't do it in front of my mom or Dean.

Yesterday Dean and I were discussing contacting Moffitt after his first round of Dacogen, today he said he has decided he doesn't want to go to Moffitt. I decided not to mention it again, maybe it is just the fear talking right now. A lot to take in within the space of five days. Thank you Beth for telling me about the records, now I will be aware of that, I wouldn't have known otherwise.

Thank you Joan for your support and kind words. Dean and I do not have a family, we are both only children, and have no children, so we are on our own. Words of encouragement from these forums are going to help us get through this, I know that just from the few threads I have had a chance to read.

And Greg, what can I say. Thank you so very much for taking the time to explain to me the different lingo and what to look for. It is looking less and less like a foreign language. All we have for the moment are the results of the lab work on Tuesday. I can't find anything showing AMT or LYMPH. Tomorrow Dean goes for more blood work, and Friday he will have a transfusion before beginning his five days of treatment with Dacogen on Monday. I will ask about the BMB report tomorrow.

Hospice was here today, they were so kind and understanding, said Dean may want to talk to someone who will help him with his fears. The nurse was so nice, told Dean he doesn't look 75, that made him feel like a million bucks. The Hospice nurse indicated that Dean was dx with RAEB-T, I thought the oncologist said RAEB-1. Are they the same?

Thank you again to everyone for being so supportive and caring, it means so much to Dean and I, especially to me, knowing we will not be fighting this alone.

I hope each of you had a happy July 4th. We are going to watch the fireworks from D.C. on the television tonight. I use to work at DisneyWorld, (research department) will miss seeing the fireworks at the Magic Kingdom.

[Al's Wife]

Patti,

As I read your post, I felt your pain. I remember so well when my husband was diagnosed and how long it took to get over that sick feeling in your stomach that things would never be all right again. However, two years have passed and we are still hanging in there. As the caregiver, my husband leaves it all up to me - all the research, treatment choices, etc. It is easier for him to cope by just "burying his head in the sand like an ostrich." But if that's what he needs to do to deal with this disease, then so be it. When he was first diagnosed, he understandably was VERY depressed and has been on antidepressants ever since. He still has his pity parties (both of us do) but most of the time he puts on a good face. We spend a lot of time together (most of it at the doctors' offices - lol) and have learned to cherish each and every day.
Give Dean a little time and he will probably change his mind about Moffitt. I'll let you know how things go for us next week.
I'm not sure how Dacogen affects the patient, but when my husband was on Vidaza he hit his nadir (low point) so many days after each treatment, where his numbers went very low and he was more tired than usual, but then he would start back up and feel pretty good until the next cycle.
One thing you and Dean have probably learned from reading - and others, I'm sure, will agree - MDS patients have extreme fatigue and that is what my husband complains of the most, just being so tired.
I'm fortunate that my husband has a hobby of working on old cars and he still pushes himself to get out and work in his shop. There have been only a handful of days when he has given in to the disease and laid down and napped and most of those days were during chemo.
God bless you and Dean and you have a lot of support from all of us on this forum. Y'all are not in this alone.

[riccd2001]

I agree with others who have responded to you over the last few days. That initial shock is hard to deal with, both for patient and caregiver. As has been said above, knowledge is power and this is a GREAT source for support.

It took me well over six MONTHS to gain the info I needed to partly understand MDS and be resolved to learn how to live the best I can. Please take a deep breath and know you are NOT alone with this.

It's been well over four years since my MDS diagnosis and I'm still learning more.

[PattiDean]

Good morning,

Dean is very tired this morning, and he tells me he feels dizzy, so he is sitting in his recliner. He goes for blood work today, and transfusion tomorrow before beginning his first cycle of Dacogen on Monday.

Linda, thank you so much for telling me about your experience. I know that Dean's diagnosis isn't good, RAEB-T, but I don't want him to know, if he knew I think we would want to give up now. I was wondering about antidepressants for both Dean and I, especially for Dean, although since he is so tired, he is sleeping for now, I am the one that is tossing and turning. We are both crying, although trying not to do it in front of each other, do it more when we are alone.

Thank you for telling me about the journey you and Al are taking through this terrible disease, it helps more than you could possibly know. I am afraid to think of my life without Dean, it has always been the two of us. Please, when you have a chance, let me know how your visit to Moffitt went, maybe it will make Dean change his mind. I know right now it is the depression talking.

Riccd2001, thank you for your supportive post. There is so much to learn about this disease. I have been trying to gain as much knowledge as possible in this last week, but sometimes what I read becomes overwhelming. This board helps me see that many MDS patients are living with this awful disease and taking each day they are given. I do wish I could put my arms around each and everyone and take the pain away.

I don't know if this is where to post this next question or not, but none of the doctors we have spoken to ever mention the costs that we may face, I just want to be prepared. Dean is 75, he is covered through Medicare, and has the traditional supplemental (Medigap) through AARP United Health. He doesn't have Part D coverage because we were paying over $40 a month for almost ten years and Dean wasn't using the coverage. He is on three medications, two he receives from the VA, one for his cognitive memory, and another for his heart.

Is the Dacogen treatment covered, does anyone know. The doctor told us it was terribly expensive, but not to worry about it. That concerned us. Not only are you fighting for your life, you have to worry about paying for it.

Thank you for any help. I am trying to be strong, and your words of support and encouragement are helping so very much. Thank you for answering the questions that Dean and I have asked and all the knowledge you are sharing with us on this journey.

[Joan]

Dear Patti;

I don't know about insurance coverage for Dacogen but Don also has Medicare and AARP United Health as the supplement. In the past 7 years, he has not had to pay anything for his treatments.

Don doesn't use the computer and when I try to tell him things I have read on this forum, he doesn't seem interested. Do you have a close friend, minister, etc., someone with whom you can just ventilate? It is hard to find that right person but I, as a talker, have found it has helped me over some rough patches. You are in a doubly hard place caring for your mother as well as Dean. I wish I could reach out a give you a hug. I am a big believer in them and I can feel your hurt. Of course, I have to remember all people don't like the touching but if you do, consider yourself hugged.

[Greg H]

Originally Posted by PattiDean

Hello Joan Greg and Beth,

we only got the dx on Friday, so it has been 5 days.

I can't find anything showing AMT or LYMPH. . . I will ask about the BMB report tomorrow.

Hospice was here today, they were so kind and understanding, said Dean may want to talk to someone who will help him with his fears.
...
The Hospice nurse indicated that Dean was dx with RAEB-T, I thought the oncologist said RAEB-1. Are they the same?
...
I use to work at DisneyWorld, (research department) will miss seeing the fireworks at the Magic Kingdom.

Hey Patti & Dean!

Getting an MDS diagnosis is a pretty big shock -- I know it was for my wife and me. It doesn't help that a lot of the information about the disease dates from the days before treatment was available, so almost everything you read makes the outlook worse than it most probably is. It does get easier to handle over time, once you learn more about the available treatments and meet folks who are living with the disease.

I do think finding someone to talk with about one's fears is an excellent idea, and I think hospice ought to be able to recommend some folks.

On the labs, it seems like every lab has their own way of doing things, and their own abbreviations. A CBC is usually done with "diff," which means they count the various types of white blood cells. It's possible that your labs didn't include the "diff," which is why the ANC or NEUT# and LYMPH# might be missing.

RAEB-T, versus RAEB-1 or RAEB-2, is one of those deals where there's more than one system for describing MDS. The older version is the FAB (French American British) system, and it has RAEB and RAEB-T. The T stands for "in transformation," meaning, in transformation to Acute Myeloid Leukemia. This is reserved for folks with 21-30% blasts (which I think is more than Dean has, based on what we have heard so far). When that system was developed, 30% blasts was considered the level at which you called the disease AML.

But, in a more updated, WHO (World Health Organization) system, over 20% blasts is considered AML. That system has RAEB-1 (5%-9% blasts) and RAEB-2 (10%-19% blasts). Some docs use the WHO system; some still talk FAB.

Neat that you worked for The Mouse. My daughter (an actor) lived in Orlando for several years. Though she never worked for Disney, many of her friends did (and still do) as performers. I did a little research work myself in the past (television, mostly). That will stand you in good stead as you try to puzzle out some of these confusing prognostic models that are used to try to make sense of MDS.

The most important thing to know about MDS is that it's not just one disease, but a collection of related diseases which haven't really been teased apart yet. So the therapy that works for one person may or may not work for another.

Generally, about two-thirds or more of folks who have high blast counts, like Dean's, respond to Vidaza or Dacogen. That's about as good as the numbers get with MDS. But, if for some reason he doesn't respond to Dacogen, there are other options and combinations to try. Most of the best drugs for MDS haven't been discovered yet, so there are lots and lots of clinical trials, and participating in one can be very worthwhile if the standard therapy doesn't work out.

Unfortunately, Dacogen and Vidaza, based on what I have heard from other folks here, are no picnic. But they can and do reduce blast counts and lengthen life for a lot of patients.

Take care!

Greg

[PattiDean]

Patti here, I sure needed to see your posts this evening, it has been a crazy day. Dean and I are so new to this disease. As I said, it is just the two of us and our 12 year old Chihuahua, Pebbles, no siblings or children. My mother is still living, she is 89.

When Dean was being discharged from the hospital they told us to get in touch with Hospice, which we did. Found out that is something we shouldn't have done. The hospital told us Hospice is there for supportive services, but that wasn't true in our case, they wanted to put Dean in the end of life care and have us sign over his Medicare coverage to them, then they would be in control of his care. We said no, we aren't looking for that yet.

We called our family physician, he put us in touch with a home health agency that his office uses, and someone is coming out to talk to us tomorrow. I have no idea what services are available, but anything would be better than nothing. I feel as though I am being pulled in two different directions between my mother and being here for Dean.

Anyhow Dean begins Dacogen on Monday, he is fearful but anxious to begin treatment. During this time, he will also be taking Revlimid orally. Greg, your posts are so very helpful, I have copied your last reply and will have Dean read it, it will give Dean some hope. He has been so depressed the last few days and that is not like him at all. Yesterday Dean saw his oncologist and his counts were all down even though he had a transfusion before being discharged from the hospital, so this morning he had to have more transfusions of packed blood (is that correct) and platelets.

Joan, thank you for letting me know about your husband and the coverage for the drugs, that will help Dean and I rest a little easier and concentrate on treating his MDS. Dean also doesn't get on the computer very often, that is usually left up to me, Dean always says "I am better at it", but I think that is just his way of not having to do it.

We haven't lived in Clearwater very long, just under a year, so we haven't met any really close friends or a church we feel is the right fit. We moved here to be closer to my mother, before this we lived in Orlando, about two hours away. Like you, I love to give hugs, they are so very special in letting someone know that you care and you are wrapping your love around them. Thankfully my very special friend from Orlando is driving out to visit on Sunday, we can't wait to see her and her husband.

Also Greg, thank you for explaining the RAEB 1, RAEB 2 and RAEB-T, the oncologist is saying RAEB-T, I thought he had written RAEB 1, so Dean and I were mistaken.

I can't thank you enough for being so supportive and caring, and taking the time to share all your information about MDS with me. You make us feel less alone in this challenge.

Joan and Greg, from Dean and I, many, many ((((HUGS)))) Thank you so very much for helping us face our fears.

[Greg H]

Hey Patti!

That is one scary Hospice story. I heard an hour-long show on Diane Rehm a few months ago on that very subject. I think it dealt more with residential hospice facilities, but they were essentially taking over folks' health care and then drugging them up and denying them treatment -- even for ailments like a minor infection, unrelated to their primary health problem. I'm glad you showed them the door.

It's very interesting that Dean will have both Dacogen and revlimid. There have been lots of studies lately looking at improving the effectiveness of Dacogen and Vidaza by combining them with other drugs. I don't have the results of those stored in my head, but I believe the combination with Revlimid in fact improved results in trials.

Take care!

Greg

[cathybee1]

Patti: My heart goes out to you both. Both Bruce and I were in kind of a daze for a couple of months after he was diagnosed with MDS. It was confusing to me that your oncologist referred Dean to hospice before initiating treatment. The life expectancy figures Dean's doctor might have based the hospice referral on were developed before most of the present treatments were available. As Greg said, a number of people with Dean's diagnosis have responded well to treatment. There was a recent post in the forums by someone who was diagnosed with RAEB-T 5 years ago.

I would just like to echo some advice given by others. When things settle down for Dean a bit, please encourage him to see an MDS/AA Specialist. We call our local oncologist Dr. Doom. We have had much more encouraging experiences with the specialists we've consulted. Doctors who specialize in bone marrow diseases have a different perspective than oncologists who treat a wide variety of disease. Also, different pathologists will often interpret the Bone marrow biopsy differently. That was the case with the most recent BMB (Bone marrow biopsy) Bruce had. One said Bruce had MDS, another said he didn't. The bottom line though is that Bruce has low blood counts which he needs continuing treatment for.

It's important not to give up hope.

[DanL]

Patti,

As Greg mentioned, there has been a lot of success in combining revlimid with vidaza. there are also a number of trials that are combining dacogen with various other aml drugs like cytarabine, idarubicin, and daunorubicin, some of which are fairly strong, others that are gentler.

Additionally, Estybon has been used with some success on patients that have either failed or not responded to hypomethylating drugs like vidaza or dacogen. There are a lot of options being developed.

Hope and belief are the cornerstones of managing MDS.

[PattiDean]

Good evening,

Patti again.

Yes, Greg, after speaking to Hospice, Dean's spirits were so down. We thought our doctor had recommended Hospice, but we found out it was the hospital, so we were wrong. So much happening in just a week, we sometimes can't figure out which end is up. After speaking to Hospice, I do have a different feeling about them, that is sad, but what you say, is basically the feeling I received.

Thank you for the heads up on combining two drugs. This fear of the unknown is scaring Dean so much, and I have no idea how to help him. He is usually the one that has always been strong for me. He now keeps saying he is going to be a burden to me, I have to keep convincing him that we are in this fight together. No one is a burden. You are so helpful, and give us hope, I thank you so much for that.

When Dean made his first post a few days ago, I don't think he knew he would get such kind and caring replies. I have read everyone's replies to him, I know he is thankful that each of you are helping him through this long journey. I have to realize it has only been a week, one day we were making plans for an upcoming trip, and the next we found out our lives would never, ever be the same. Our trip is now going to be in a different direction for awhile.

Thank you Cathy for telling me that you and Bruce were in a daze for awhile, I worry about Dean feeling so fearful and thinking he will now be a burden to me. I try to keep reminding myself it has only been a week, Dean needs time to accept what is ahead of him, and maybe his fighting spirit will then return.

As I told Grey above, I was confused about the Hospice referral, apparently it was the hospital that made the referral. The oncologist didn't know anything about it when I told him what happened.

I feel as you do, when things settle down and Dean hopefully does well on chemo, we will research more options for us. Right now he needs time to accept what he is dealing with, I think maybe he feels like he is in a nightmare and wants to wake up and find everything is like it was before he heard the words - MDS. Thank you for sharing your feelings with me on waiting.

And Dan, also a great big thank you for bringing some of the new drugs to my attention. There is so much to learn, and sometimes not enough hours in the day to do it all. I am going to remember what you said at the end of your post - we need hope and belief!

Some good news, yesterday when I felt like I had no where to turn, our family physician called to see how Dean was doing. I was crying when he called because I was feeling overwhelmed, taking care of my mom, worrying about my recent mammogram - I have received a letter indicating there was something that needed a second look, then someone backed into my car while I was parked at the grocery store and of course the problem with Hospice.

Our doctor said he has a home health agency that he uses and said he would tell them to call us. They did, and came by today for a visit. The nurse was so supportive, she understood that I needed some help, as does Dean, so they are going to work out a schedule for the nurse, aide and therapist to come to our home. Dean is very weak, which is also something that is difficult for Dean to accept, he has always been active. When he tries to shower and dress in the morning it makes him very tired, he is having shortness of breath and coughing. Luckily he is eating, because he lost over twenty pounds, he does look like he is putting some of it back on. Dean is thin anyhow, so he was beginning to look like a toothpick.

Anyhow we are now ready for the battle. Chemo on Monday. Thank you again to each and everyone of you for your compassion, support and kind words. I don't know how to express how much it means to me. I sit down at my computer in the evening, see your posts, it lifts my spirits and gives me hope.

Hope and belief are the cornerstone of managing MDS.

[newfintexas]

Hi, Glad to see you hear. Your DX sounds pretty close to the one given my hubby a few weeks ago although he is 56. We were waiting on the chromosome tests to come back to determine he is intermediate and will be starting dacogen on the 16th. We are scared about the side effects etc....but I think we or at least I am still in that *can't believe* it mode. Happened so fast, seems one day he was great, couple weeks later short winded and now a few weeks later facing chemo. Greg H, glad you are here , all you have stated is exactly what our oncologist told us as well. The added iron overload is something we will have to deal with but hopefully the next 3 - 6 months of chemo every 28 day/ 5 day cycle will make this thing slow down. To do nothing is definitely not an option. Keep checking in, and if you have any questions please feel free to ask, I've found someone on here has encountered it along the way.

My question..has anyone here heard of using wheatgrass as a way of moving the iron out of the tissues?

Thanks and again welcome!