New to forum, dx mds a week ago

[triumphe64]

Originally Posted by newfintexas

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

Thanks and again welcome!

There is at least one thread discussing this.

[newfintexas]

Hi Patti

I know exactly where you are. I asked the oncologist last week, is it ok for me to be scared - hubby tells me, you can't be scared yet, we don't know what is going to happen - of course I know that he is scared as well but is being the *man* - Dr says of course it is....I said, it's one thing when something happens to yourself - you have to deal with it, but when it happens to the person you love, your partner in life, your best friend - it is frightening that all I can do is the best I can to take care of him but I can't take any of this from him, I have to watch - that is the scariest thing that has ever happened to me.

We've been told that we are in a marathon - but the Dr is so good, upfront with us, telling us like it is, he is open as is his team to any questions that have and will come up. We go for Chemo education and a psych consult next week before starting the Dacogen the following week to answer any questions, give us answers to questions we don't know to ask yet..and hopefully help us through this time. I am self employed and right now carrying the load of income for the house - I have not been able to concentrate the past month and just scaping by with what I have had to do...that is rough, because I know I can't get by doing that, I have to buckle down, but it is so hard - I lost it this week as we sat in the chemo clinic while hubby got another 2 units of blood, think maybe it is starting to hit...I try and stay strong, but its hard and terrifying not knowing where we will be in 6 months, 1 yr etc.

Hang in there, and know you have a bunch of good people here that will help with what they know.

[newfintexas]

Thanks Triumph

Like your name ..positive!! am going to look into this, even though being dx'd with intermediate, not that many transfusions yet and already concerned with iron. Going to see if I can find a reputable supplier and get it for hubby.

We have been so overwhelmed the past few weeks, world revolving around bad news, bad counts, transfusions, chemo upcoming etc. Have our grandchildren visiting from Canada and they have been a godsend..they are 2 and 4 and keep our minds so occupied we just don't have time to dwell. The dr put off starting chemo until they go on the 15th...then our battle begins again, first chemo on the 16th. Its good to have this forum..a good outlet, I like to read others experiences and knowing we are not alone goes a long way.

[triumphe64]

Be sure to attend this event in Dallas. You will find it very helpful.

http://friendraising.towercare.com/M...dCode=3V9TIFRW

[PattiDean]

It is 5:00 a.m. and I (Patti) have been awake since 3:30 a.m. Thankfully Dean is sleeping, he is so tired all the time.

While I was laying awake I was thinking about everyone on this forum. You may be the patient, spouse, partner, child, grandchild, friend, yet each of you take the time to offer support, knowledge, sympathy, compassion, and even when we think all hope is gone, you share your good news in dealing with this disease. I just want to keep thanking you over and over again for helping Dean and I through this last week and giving us the strength to know that even though we have a long road ahead of us, we can make it through this, we are not alone.

I do wish I could wrap my arms around everyone and make all of this go away.

NewfinTexas, reading your post was almost as though I had written it. You expressed everything that I am feeling. You are right, I am so thankful for this forum, so many kind and caring people to help us through the coming months, and hopefully years. Dean and I do not have children or siblings, we just moved to the west coast of Florida to take care of my mother, not realizing that Dean would be the one needing care. I feel that I am not alone when I sit in front of my computer and see the kind and caring people on this board that have written to me offering their support and letting me peek into their lives as they live with this disease.

triumphe64, I agree with NewfinTexas, your name is positive!

NewfinTexas, please let me know how your husband does with his treatment, our husbands will be going through this journey at the same time, and maybe we can share our fears and "triumphs" along the way. We are blessed that Dean and I are older, we are retired and are covered through Medicare. It has to be overwhelming to be dealing with MDS and worrying about your business, when you want to concentrate all your energy on being there for your husband. (((HUGS))) Have a wonderful time this week with your grandchildren! They are such a joy! I am happy they will be there with you.

Before I end my post and make myself a cup of coffee, I have one question. Can someone give me an idea of what foods to make for Dean if he does not have an appetite during his treatments. He lost twenty pounds before we found out he had MDS, and thankfully he has put five pounds back on, eating is helping to calm him down. I stop eating when I am nervous, he reaches for food, so I am happy about that. I do worry that he will lose more weight during treatment. Thank you for any help you can give me.

I will keep everyone in my prayers.

Are we allowed to attach pictures? I would like to post a photo of Dean and I, I am not sure why, but I guess so we are just not a name, I guess as a way of introducing ourselves. I am not sure if that is permitted. Thank you.

[PattiDean]

I have my cup of coffee and thought of another question.

Will Dean and I ever be able to enjoy the little things that we didn't think about. We enjoyed having dinner out, for now the doctor says his immune system is too low and he shouldn't be with crowds. We have been sitting home, and Dean is becoming more and more depressed. We need to know our lives aren't completely ruled by MDS.

Thank you again for all your kind words and support over the last week.

[Sally C]

Good morning Patti,
I think we all know what it's like to wake up in the middle of the night - things seem so much worse in the dark!
I just wanted to tell you that my husband Don was diagnosed 1/09. There was a time that he could go nowhere without a mask. His neutrophils (the immune part of his white cells) went to 0.0 and he ended up in the hospital for 2 weeks and had 24/7 iv's of antibiotics and then another 2 weeks at home with my giving him his antibiotics through his picc line (outside access to vein that goes into the main artery to the heart). Our oncologist told us at one time he was on her "death list". She didn't tell us this until she took him off.
If you read about our story under "Clinical Trials" you can see our journey.
Following Campath at NIH (4/09) every inch of his skin peeled off - I had to shake out all his clothes before I washed them - the floor was covered with his skin.
After the Promacta clinical trial his whites are normal (and were the first to normalize before Promacta) - his reds are now normal and his platelets are over 100,000. After about 125 transfusions in two years he has been transfusion independent since March, 2011.
I guess the point I'm making is there is so much out there to treat MDS and even though things can look so bleak now, with God's Grace they won't stay that way. You do adjust to the world of MDS believe or not.
You have come to the right place with the forums. The people are wonderful as you know and no matter how distraught some of them are, they are always willing to reach out to console or cheer successes.
Hang in there and God Bless!
Sally

[Al's Wife]

Patti,

My husband actually likes the Boost and Ensure drinks that you can buy in the store. You can also add ice cream to make it more like a shake. One of our doctors told us that MDS is not made better or worse from any kind of food (although my husband did eat asparagus daily for awhile to see if it helped and it didn't) and for him to eat whatever he felt like eating, that the calories were more important than the nutrition at this point.
Dean is probably going to feel pretty rough once he begins the Dacogen but just keep reminding him that he'll feel worse and then better, hopefully. They gave my husband antinausea meds and he didn't experience nausea, thank goodness. But he was on Vidaza and not Dacogen; however, I think they are similar in nature.
It's probably hard to believe it now; but, yes, you will be able to enjoy life again, just not like before. Honestly it took me about two months to get over the shock when my husband was diagnosed. But now we are able to laugh and enjoy life and consider each day a precious gift.
Do I still get scared? Am I worried what will happen at Moffitt this week? Yes and yes. It's a roller coaster ride, for sure. But I have faith in God and I know He will sustain us.
My husband and I have been married for 40 years and we are closer now than ever. MDS has brought us closer and we no longer take each other for granted.
Just give yourselves time to adjust. Again, we are all here for you.
God bless. And lots of HUGS,

[Greg H]

Originally Posted by PattiDean

Are we allowed to attach pictures? I would like to post a photo of Dean and I, I am not sure why, but I guess so we are just not a name, I guess as a way of introducing ourselves. I am not sure if that is permitted. Thank you.

Hey Patti!

If you look up in the upper left hand corner of the marrowforums menu, there's a choice called "My Settings." Choosing that will take you to a place where you can upload a profile picture or add a "signature," which is the lines at the bottom of this post that give folks kind of a snapshot about your diagnosis.

You can also put a photo right in one of your posts, though I think you have to have the photo living someplace else on the web (like on flickr) for that to work.

Take care!

Greg

[PattiDean]

Good evening Greg, Linda and Sally,

Greg, I was able to add a profile picture, thank you for taking me through it step by step. You made it so easy.

Linda, I picked up Ensure this morning when I was shopping, and I was able to get Dean to drink a bottle. All day he has been telling me he doesn't feel like he wants to eat, so I was happy to see him drink the Ensure. I purchased two packages. I use to always be after Dean to eat healthy and watch his weight, now that doesn't seem so important anymore. I would probably be so happy right now to see Dean eating a greasy cheeseburger with fries.

Thank you for sharing with me that you still get scared. I know I have to be strong for Dean, but the thought of seeing him suffering is overwhelming to me. I want to be able to take it all away. He is such a kind and caring person. When I think of my life without him, I don't know if I can go on, he is my life. Without Dean, I am all alone.

Linda, please let us know what happens at Moffitt. I wish I could wrap my arms around you from here. You and Al will be in our thoughts and prayers.
Thank you for the hugs, can I give some back to you. (((HUGS)))

Sally, Dean is suppose to wear a mask if he goes outside or we have company, thankfully he has been very good about wearing it. He is also washing his hands constantly. Before this terrible dx, two of our favorite activities were going out to dinner and going to the movies. I know Dean wants to be able to do that now, he is upset that all he is doing is sleeping, he is so tired.

I am so scared because I have read about the type of MDS Dean has, RAEB-t, and everything I have read does not give me much hope. I don't want Dean to know, he isn't one for getting on the computer, so I don't think he knows that things don't look good, yet I do feel he knows in his heart. Dean is such a caring and giving person, he is my life and I don't think I can go on without him, he is all I have and I am so afraid of being totally alone when he is gone. I also don't know how I will be able to deal with seeing him suffering, how do you get through it Sally? I tried to find your story, but I wasn't sure where to look. Where do I find "Clinical Trials".

I do pray, so many prayers, they give me hope, and then I slip back into my fear. Tomorrow is Dean's first treatment with Dacogen, I want to believe it will give Dean a little more time and some peace from this disease for a short while.

Thank you again to each and everyone of you for all your kind words, thoughts, prayers and support. You are each facing the same battle, and yet you come here and give me the strength to get through the day.

Good night! Patti

[Greg H]

Originally Posted by PattiDean

Where do I find "Clinical Trials?"

Hey Patti!

You can find the story about Don and Sally's experience with the NIH trial of Promacta here and here.

RAEB-T is a tough diagnosis, but it's important not to get hung up on the years (or months) or survival you find reading about MDS online. Much of what you read will be based on the experience of patients before there were any treatments for MDS other then transfusions ("supportive care.")

Vidaza was approved for MDS in 2004; Revlimid, in 2005; Dacogen, in 2006 -- so there really hasn't been enough time to develop good data on prognosis and life expectancy since these therapies were introduced.

Aside from that, the course of MDS is highly variable from individual to individual, so looking at averages isn't all that useful.

It's likely to be a rough ride, because of the side effects of the drugs and Dean's level of fatigue, but it is definitely not hopeless.

Good luck with the first treatment on Monday.

Take care,

Greg

[PattiDean]

Good Morning. It is 4:30 a.m. and I have been awake over an hour. Thankfully Dean is sleeping.

Dear Greg, what can I say, but thank you so very much for your kind words, and your support in helping Dean and I get through this. I hope you know how much your posts mean to me.

I know I shouldn't research or read about Dean's diagnosis on the internet, but I want to know what he is facing so I can be strong for him, although I seem to be failing at achieving that goal.

Thank you for your "good wishes" for Dean's treatment today, you are giving me the strength that is so difficult to find on my own right now.

DanL said to have hope and belief, and that is what you are telling me in your post, I have to begin concentrating on those words.

Thank you again for helping me get through this. I have no one to turn to, it has always been just Dean and I, so we were never totally alone. It is less lonely when I sit here and write, and I find such strong people dealing with their own battle in fighting this disease. Thank you over and over again. I will keep your good wishes with us today, they help more than you could ever know.

(((HUGS)))

[Sally C]

Hi Patti,
First of all thanks Greg for providing the links. I'm not too efficient at that.
Patti, you asked how you get through watching them suffer. Once they started the testing, transfusions and finally the Campath treatment, I just got caught up in getting Don where he needed to go, sitting with him during transfusions, and dealing with whatever health situations would arise. I think at some point the mind just kind of goes into shock and the fear of the future is replaced with the logistics of the day and whatever comes up that you may have to deal with.
More important than anything - don't give up hope. There are many on this forum who have had a grim prognosis that are still here posting. Just make sure you have a specialist in treating MDS. You may also consider clinical trials at some point. The world of hematology is make huge strides every day in dealing with this disease.
We are all here for you - you are definitely not alone.
With prayers and hugs,
Sally

[Al's Wife]

Patti,

I hope things go okay for you and Dean today with his first treatment of Dacogen. I remember so well Al's first day with Vidaza. We learned he had MDS on Wednesday, May 26, 2010, and he began Vidaza that next Monday. They would not let me stay in the treatment room and I had to leave him. I leaned down and kissed him and when I got to the doorway, I turned around and he looked so lost and scared sitting there. I went down the hall and burst out crying. Thank goodness he didn't see me. One of the nurses took me into a room and sat there with me, and she was so sweet and caring and took the time to explain things to me.
Now over two years later, looking back, our life has certainly taken on a new norm but we have learned to laugh again and rejoice in each day.
We are waiting now for a call from our local oncologist as Al (who never has a temperature) started running a fever yesterday and developed a deep cough. Even though we are scheduled for Moffitt on Wednesday, I wanted his regular doctor to check him and we'll probably get labs drawn. I'm always so anxious to see those numbers, but I'm sure they are not going to be good this time. I'm just praying that we are still going to be able to go to Moffitt on Wednesday.
Try to stay strong, and I'll do the same. Hang in there and keep the faith. I'll post later and I'm sure you'll do the same to let us know how you and Dean did today. Good luck.
HUGS,

[Greg H]

Originally Posted by Sally C

Hi Patti,
Once they started the testing, transfusions and finally the Campath treatment, I just got caught up in getting Don where he needed to go, sitting with him during transfusions, and dealing with whatever health situations would arise. I think at some point the mind just kind of goes into shock and the fear of the future is replaced with the logistics of the day and whatever comes up that you may have to deal with.

Sally,

This is brilliant; I'm thinking that you would make a good philosopher. An MDS diagnosis, like any other great shock or loss, is at first a huge blanket of gloom that settles over you and makes it hard to see or do anything. But things must be done, and the doing of them eventually allows you to feel your way through the gloom, catch a ray of sunshine now and again, and even, from time to time, walk right out of the gloom into daylight.

I'm not a big fan of the "journey" language that we all seem destined to use when talking about cancer. It always feels like my "journey" is in the backseat of a particularly smelly Greyhound bus, booked with a ticket I didn't buy, taking me to a place I don't really want to go.

But the truth underneath all that "journey" talk is that, ultimately, you do have to put one foot in front of the other and do stuff. And the doing of that stuff, unpleasant as it can sometimes be, has value, and meaning, and even a few rewards.

The other good thing about the "journey" is that, even if the bus is smelly, your fellow passengers tend to be some of the strongest, friendliest, most helpful and compassionate folks you are every likely to encounter.

Take care!

Greg

[Sally C]

Hey Greg,
Thank you for your kind words. It is quite a compliment coming from you. I hope it is of help to Patti and all those like her who are just coming into the world of MDS - thinking that the early emotions are how you will always feel. The mind is an amazing thing in that it can adjust to sometimes very difficult situations. It can help us cope far beyond what we may initially think we can.
Thanks again for your post and for your always being there with your vast knowledge, wit, but most of all your willingness to take so much time to help anyone you can.
God Bless you and all on the forums.
Sally

[Neil Cuadra]

Originally Posted by Greg H

I'm not a big fan of the "journey" language that we all seem destined to use when talking about cancer. It always feels like my "journey" is in the backseat of a particularly smelly Greyhound bus, booked with a ticket I didn't buy, taking me to a place I don't really want to go.

But the truth underneath all that "journey" talk is that, ultimately, you do have to put one foot in front of the other and do stuff. And the doing of that stuff, unpleasant as it can sometimes be, has value, and meaning, and even a few rewards.

The other good thing about the "journey" is that, even if the bus is smelly, your fellow passengers tend to be some of the strongest, friendliest, most helpful and compassionate folks you are every likely to encounter.

The way I see it, we were driving our own bus when somebody named Bone Marrow Failure grabbed the steering wheel from us and turned in a different direction. We missed a stretch of the original road -- nothing we can do about that now -- but we and our support team have gotten us headed back in the right direction, on a different road than we started on but still one we choose to be on.

[Al's Wife]

Glad to see all of our philosophers out in full force today! Couldn't have come at a better time. Such wonderful words of wisdom from people who have been where we are.
We called our local oncologist this morning since Al's temperature went up to 102 last night and he had a deep cough. But the oncologist said just to go to our regular primary care doctor. Grrrrrrr
Al was feeling better this morning so he has decided to just wait and go to Moffitt on Wednesday. We recently changed primary care doctors and he's never seen this new doctor. I hope this fever and feeling bad is just a little bug and nothing to do with his MDS.
I had to call Moffitt today as they didn't have us scheduled for any lab work before seeing the doctor on Wednesday. They said, oh, yes, be here an hour early for lab work; but no one had said anything about it and it wasn't on our appointment schedule.
You really have to be your own advocate. We have found this true at EVERY hospital we've been to.
So I guess we will be flying out of Atlanta on Wednesday morning for our first visit at Moffitt. Not sure what to expect but hope the doctor will give us more than one option. We'll just have to wait and see.
Hope Patti and Dean have made it through this first day of Dacogen. I keep checking to see if she's posted yet. I've had them on my mind all day, in-between worrying about what is going on with my husband. Today is not one of our better days. Maybe tomorrow will be.

[PattiDean]

Good evening.

Dean had his first treatment today, his spirit seems to have lifted afterwards. I think Dean was petrified of the chemo, fear of the unknown, and had worked himself into a depression. Now that fear is less today, he is a little more like the Dean I know.

Dean was a little weak when we arrived home, and sat in his rocker for awhile, he fell asleep for about thirty minutes. He woke up and ate all of his dinner, yesterday he didn't want to eat at all, and he is now taking a shower. I know he may become weaker or more tired as the treatments continue, but I think Dean is ready to fight now.

Linda, you have to be so concerned about Al, especially with your upcoming visit to Moffitt.

It is so sad to read that you were not able to be with Al during his first treatment. I was able to stay with Dean today, he was so nervous when he walked into the treatment room, so I know he was happy I was there. The whole session lasted a little over three hours, they gave him an IV to keep him from becoming dehydrated, Benadyrl, a steroid medication, something to keep his stomach from becoming upset and finally the Dacogen (forgive me, I am not a nurse, but every time they started a new bag, I asked what it was for, I am just writing what they told me ). Two hours into all of this, Dean said he was hungry and asked me to go to the McDonald's across the street and get him a milkshake.

The nurse that did the treatment use to work at Moffitt, and she told us that Dean's oncologist interacts with the center. This nurse worked with MDS patients at Moffitt, so she gave us a lot of information on Dean's treatment and what he could experience in the future. She told us about the trials and how many patients have had good outcomes when all hope seemed gone.

You are so right about being your own advocate, the nurse at the oncologist office stressed that to us today. She told us that we may have to scream and yell sometimes when we are in the hospital because many medical professionals are not aware of this disease, we will have to make them aware of the risks if Dean is there for an infection.

It would have been awful to go that far to Moffitt and not be able to have the labs done, I am so glad that you noticed they were not scheduled and called to check on them.

How long will you be at Moffitt?

I hope Al's temperature goes down, it is a terrible time for this to happen. I will say lots of prayers tonight for both of you. You will be in my thoughts, Linda. Please let me know how you are doing! I am sending you a big hug - I hope you can feel it. (HUG)

Sally, you are so right, I think what you posted is beginning to happen now. Since last week, we have been concentrating on MDS. Beginning today we are now concentrating on Dean, and not MDS. We will certainly be busy, and maybe that is a good thing, we don't have time to think of the future, only on the present. I guess it is day to day, isn't it, we can't look into the future and we can't change it either. I know there will be difficult days ahead, but if I think about that, fear will overtake me, and then I won't be strong for Dean.

So tomorrow is another treatment, thank you to everyone for getting me through this day, your strength is making me stronger, and I feel safe knowing on those days I am not so strong, you will be there for me.

Good night and love to each of you!

[Al's Wife]

Patti,

I'm so glad that things went so good today and especially that you had a caring nurse that was there to help explain things. That makes all the difference in the world. Glad to know that Dean tolerated the Dacogen and all the other meds too. And it is good that you asked questions. I was a court reporter up until about six years ago and I got to hear about all the terrible things that happen because people don't ask. So I'm always in their faces and always asking questions. You absolutely have to.
Hope you can get a good night's sleep tonight. It is good to have this first day behind you.
We are not sure how long we will be at Moffitt, it all depends on what our options are. They are going to have to set up another bone marrow biopsy, for sure, if he goes into another clinical trial as the protocol says it has to be in the last 30 days. That is why we were pushing so hard to try and get there last week, but it was not to be.
Al is feeling better today with just a slight fever, so hopefully it was just a 24 hour bug.
God bless you and lots and lots of HUGS! Good luck tomorrow, too.

[Sally C]

Dear Patti,
I'm so thankful that things seem to be looking up and that you're starting to get into the swing of things. And you are right - it is day to day - and you'll deal with what comes with each day. It seems to take the focus off the big picture and distill it down to a more manageable view. Also now that he's started treatment you feel you are finally dealing with the MDS rather than only being able to worry about it. You will get to know your health care providers and before long they will be like family and a huge support. There is a reason why they call nurses "Angels of Mercy"!
But don't forget to take care of Patti. You are being a rock for Dean but you need to pamper yourself a bit as well.
Please keep us posted. Hugs your way.
Dear Linda,
I wish you and Al the best of luck tomorrow. I know you'll post as soon as you can. Hugs your way as well.
God Bless to each of you,
Sally

[PattiDean]

Hi Sally,

Thank you for reminding me to take care of myself, I think I have forgotten about that for awhile.

Two weeks ago, while Dean was in the hospital, I received a letter regarding the mammogram that I had before Dean was dx with MDS. There is something that has to be rechecked. I haven't had time to even think about making another appointment, but today when we got home from Dean's treatment I called and have an appointment for July 24.

I also need a hair cut, but I feel so guilty thinking about that. I am beginning to scare myself when I look in the mirror though!


Linda, last night I slept for nine hours, never woke up until morning, it felt so good to finally get a good night's sleep.

How is Al feeling today?

Like Sally, I also want to wish you and Al lots of luck with your visit to Moffitt. You will be in our thoughts and prayers!

I love the hugs you send my way, they make me feel better. Dean and I want to send lots of (((HUGS))) to both you and Al. We will be thinking of you.

[Sally C]

Patti,
Would you please make a hair appt.??? Not only will it make you feel better - it's normal and you need normal!!
Plus I'm sure Dean would love to see his beautiful pre-MDS wife - instead of - as you said - "someone who scares herself in the mirror" . It would make you both feel better!
MDS is hard on both of you - and don't sell that short. You may be suffering as much or more than he is plus you have all the responsibility as well.
So go get that scraggly hair cut! Your guilt about wanting it cut is inappropriate guilt - you don't need any more on your shoulders than you already have - not even your hair .
God Bless and keep us posted,
Sally

[PattiDean]

Hi Sally,

I made a hair appointment for Saturday. You are right, it will feel normal, and after the ups and downs of the last two weeks, I am looking forward to that. Can't wait for Saturday to get here.

Dean is still doing good with his Dacogen, no problems, he even looks like his old self, not tired and weak.

The Revlimid that Dean is suppose to begin taking is another story. We don't have Medicare Part D, since Dean gets his prescriptions through the VA. We are checking to see if they will pay for the drug, that is the only bump in the road for now.

Thank you for the pep talk Sally! I needed that, and you helped so much.

Sitting here wondering how everything is going for Linda and Al at Moffitt.

Good night, (((HUGS)))

[Sally C]

Hey Patti,
Am so glad to hear of your appointment. I know it will help with your whole outlook!
That's wonderful that Dean is tolerating the Dacogen so well. Please keep us posted.
I too wonder about Linda and Al. I hope she'll post soon.
Enjoy getting your hair done - know you'll be gorgeous!!
God Bless,
Sally