mds

[Sharon G]

what can you tell me about aranesp treatments? ...and is mds truly cancer?

[Sally C]

Hi Sharon,
My husband received Aranesp shots for quite a while and had no adverse side effects.
As for MDS being cancer - some call it cancer and some don't. To me there are so many similarities - chemo, uncertainty, etc. - if it's not cancer it missed a good chance.
I wish you well.
God Bless,
Sally

[donna j.]

Hi Sharon,

At a conference called "Living AA,MDS or PNH" on 3/11/11 Posted on AA & MDSIf online learning, Dr. Steensma, a renouned MDS dr from Dana Farber in Boston, when asked if MDS was a cancer said the World Health Organization and the National Cancer Institute both recogonize it as a cancer. You can listen/watch his webinair interview its very interesting and goes into further detail.

Donna

[Sharon G]

I am very new at this so please accept my apologies. I was recently diagnosed with MDS refactory anemia with multilineage disorder. The oncologist did explain this to me, however I forgot simply because I was not able to understand his terminology. I put on a good front to people but there are plenty days that I just don't fee well. I call these my recliner days. I am so glad that I have a good, trustworthy caregiver that I rely on. I have had blood transfusions done several times but why don't I ever feel any energy? On several occasions I have asked my oncologist what my future looks like, and he tells me that it is always a 'wait and see'. Somehow this is not to reasurring but he says that there is no way to tell, that is why it is called a wait and see until the next visit. Oh well, if nothing else even on my worst of days, I know that God is with me. I would appreciate if anyone can help me in some way to understand because I feel totally stupid in not really knowing what is going on inside of me.......................I thank and appreciate you.

[Sharon G]

I deeply appreciate your response to me. Sometimes I just feel so alone that it's easy for me to get depressed; plus I deal with depression even before I got the mds diagnosis. It is just a very good feeling that somewhere out there you reached out to help me and for this I give you thanks.

[Neil Cuadra]

Sometimes it takes a brave doctor to advise a "wait and see" approach, even though it's often the correct thing to do, because patients so often insist on some kind of action. But action, meaning immediate treatment, isn't always best. It's very hard living with "wait and see" if you let yourself think it means "wait until something bad happens", but it's actually a blessing when your condition is good enough that action isn't needed, and you don't have to take on the risks of treatment, just an occasional transfusion. Without knowing the future you and your doctor can't be 100% certain what's best to do, but a lot of patients would be lucky to be able to use a wait-and-see approach.

I have two specific suggestions for you. One is to stay close to the people around you and be honest with them. Let them know you have good days and bad days and give them a chance to share your burden and help you cope. My other suggestion is that you read about MDS in language meant for us laypeople. The best source is the free packet you can get from the Aplastic Anemia and MDS International Foundation. It's not just about learning some medical jargon. It's to understand more about what's happening to you, let you feel more in control, and let you find the reasons to be optimistic.

[Sally C]

Dear Sharon,
You have come to the right place on the forums. You will never find more caring and supportive people who know exactly how you feel.
Lean on all of us as we lean on each other.
God Bless,
Sally

[Sharon G]

I am so very glad that you responded. It's very nice to know that I am not alone in this process and that there is someone who listens to my 'confused and befuddled state' of mind. I am 58 years old and a person would think that I would know better....to handle the bumps in the road after all my past experiences. Anyway, do you mind me asking you how you got to be on here? No matter why, I am thankful. As always.

[Sally C]

Hi Sharon,
My husband found out he had a blood problem when he went to a doctor for another problem in Nov. 2008. It took 6 months and going to the National Insititutes of Health in Bethesda, Md. to finally get a diagnosis of MDS - refractory anemia with multilineage dysplasia - the same as yours. He then went into their clincal trial for Campath which nearly killed him but did help a little as well. He tried Cyclosporine but that did nothing but make his hair look like he had a pompadour. He was transfusion dependent from Jan., 2009 until March, 20ll - probably a total of 125+ red cell and platelet transfusions. He was the first guinea pig in NIH's Promacta (Eltrombopag) trial to raise platelets for MDS patients and has been transfusion independent since. It helped his platelets as well as his red cells. He is off the Promacta right now as his platelets went over 100,000 and there is a concern for clots at that level. Counts are still holding strong. His platelet low point was 4,000. His neutrophils hit .00 as well. There was a time he was on our doctor's "death list". So I can honestly speak that miracles do happen. Right now we are in Portland, Me. on a trip to see how many lobsters I can track down and eat.
If you are interested in a more detailed account of his clinical trial for Promacta you can read it under "Clinical Trials" as well as many other posts I have made along the way.
As to your fatigue - our oncologist told us it's when the WBC comes up that make patients feel better rather than the RBC's. That was a surprise to us. But I think fatigue is a hallmark of MDS.
Again, welcome to the forums. I think we all start out the same way - totally in the dark - knowing nothing about this crazy disease called MDS. But one does tend to learn fast - with their own experiences and those on the forums. Use this blessing called "Marrowforums". It is truly God's Gift to those with these blood diseases.
God Bless,
Sally

[Sharon G]

You have no idea how much it means to me that you have taken the time to hear my voice. Now I know that I'm not the only one all by myself. I have a question though. Is it known how your husband 'acquired' mds? My mds remains a mystery. I hope that we can keep in touch. As always.

[Sally C]

Dear Sharon,
I am so glad that my post made you feel better.
We don't really know why my husband developed MDS. He was fine in March, 2008 and found he had a problem in Nov.
Most MDS cases are considered de novo - in laymen's terms - they don't know why. As in the case of Robin Roberts, hers came from previous chemo for breast cancer and can be a very aggressive type of MDS. Also sometimes viral infections are suspected as well as exposure to certain chemicals. Agent Orange and other chemicals used in the Viet Nam war are suspected which I agree with. There is a ongoing battle with Vets and the VA over this. Also certain vitamin and mineral deficiencies can cause bone marrow failure.
I have long thought that Don's was caused by his yearly use of the weed killer Round-up. Although he covered his body he didn't wear a mask. He vehemently disagrees with me but there was a recent study that named Round-up as a cause of MDS and that was all I needed to hear. I believe most of the time they really don't know.
But you are definitely not alone. Not only is God with you but as you either post your story or ask questions on the forums, the wonderful people here will be a great support to you. Don't be shy in reaching out!
Please feel free to contact me via e-mail - shcalvert3@aol.com - with any questions or if you just need to "talk".
Take good care of yourself.
God Bless,
Sally

[bebop]

hi Sharon and welcome to the forum. I am not glad you have mds but glad to have you with us. I am going to try to find you a link of a place that will mail you a booklet on mds that has tons of information. in the meantime here is a link also with good info.

http://www.mdsbeacon.com/

[donna j.]

Hi Sharon,

I don't know if you saw my earlier reply, but the World Health Organization and the National Cancer Institute recognize it. I have benefited from a Cancer Pool at my job assisting with pay while I work on my MDS, and the American Society has offered me services as a Cancer patient.

The AAMDS Org presentation I discussed in my earlier posting, did aknowledge MDS as cancer, however the Dr. does mention the MDS "shadowlands".

Giving something a "label" can be a beneficial thing.

hope this helps

Donna

[Sharon G]

Originally Posted by bebop

hi Sharon and welcome to the forum. I am not glad you have mds but glad to have you with us. I am going to try to find you a link of a place that will mail you a booklet on mds that has tons of information. in the meantime here is a link also with good info.

http://www.mdsbeacon.com/

first off, i want to thank you (among everyone else) for taking the time to acknowledge me. it is terrible to feel so alone at times but now that i found a place to reach out to with others who are knowledgeable much more than i; is a welcome feeling. in the meantime, i will check out your link to me. you are much appreciated.

[Sharon G]

Originally Posted by donna j.

Hi Sharon,

I don't know if you saw my earlier reply, but the World Health Organization and the National Cancer Institute recognize it. I have benefited from a Cancer Pool at my job assisting with pay while I work on my MDS, and the American Society has offered me services as a Cancer patient.

The AAMDS Org presentation I discussed in my earlier posting, did aknowledge MDS as cancer, however the Dr. does mention the MDS "shadowlands".

Giving something a "label" can be a beneficial thing.

hope this helps

Donna

yes, i have seen your quote and much appreciated. thank you for guiding me in the right direction, and for all your help. i am learning that the more i understand about mds, the less 'threatening' i feel-if that makes any sense?

[cathybee1]

We all have slightly different stories, but are in the same club. It's a bad news/good news thing. The good news is this group. Shoulders to cry on, and great information. It makes coping easier.

[bebop]

http://www.mds-foundation.org/pdf/handbook-english.pdf


I believe this is the one I got for our family. they mailed it to us but this one is a pdf file you can read online.

[Cheryl C]

Hi Sharon

Very sorry you have joined the MDS ranks. It's pretty scary at first, but remember that "knowledge is power". Find out as much as you can and trust that God cares about you and will be with you no matter what happens.

I also have MDS RCMD and just wanted to share that when I don't feel well I've come to the conclusion that often it's because my body is fighting an infection, though sometimes it's not obvious what type of infection. My haematologist prescribed 4-weekly infusions of gamma globulin (called Intragam) and the quantity is determined by your weight. I believe this has helped my immune system a lot. You could ask your doctor if it might be an option for you. However bear in mind that even within individual categories of MDS we are all different.

I hope you find something that can help you feel better!