New to this forum and MDS

[Mike M]

I was diagnosed to have MDS last November and later, specifically RCMD, risk level 1. I have come to realize that I'm at the very begining on this disorder and wonder if there are others in a simular situation or where diagnosed at this level. Also is there any information on how this will progress? Thanks.

[lindajo]

Hi, The worst thing about this disease is that it is so different for everyone.

There is no way to really predict how it will progress. Researchers are still looking for a way to make predictions. Many new treatments are also being used and tested.

I feel it was 10 years before I had any idea of how to manage it. I have had the disease 18 years. Currently I am Refractory anemia with a IPSS level 1 according to 1 expert, RCMD to another and just Bone Marrow Failure patient to another.

Don't get too hung up on your label. It can change depending on what expert you are with. Learn as much as you can about the disease and trust your insticts about what to do. Don't be afraid to ask a million questions or to get second opinions. We are all here to support you. Lindajo

[Mike Conlon]

Hi Mike: Linda Jo is exactly correct in what she says. I am not nearly as well informed as some members of this forum. I know that elevated blasts is bad, lowered blasts is good. Low blood counts is not good, normal or close to normal blood counts is good. Great oversimplification but this approach seems to work for me. I just started my third year on Dacogen and have been in total remission since early this year. Most people on this forum are not on Dacogen. I don't know the significance of this fact, just what my results happen to be. Ask questions, research, ask more questions. The oncology nurses in the treatment rooms can be a great source of help. I have not found my doctor to be very forthcoming, but it is quite difficult to argue with success. This is a great forum, but it can be very frustrating to try and compare other peoples stories and attempt to compare their story with yours. Nonetheless I have found this forum to be a great source of information and inspiration. Be patient, the journey is long and there will be many trying circumstances and moments filled with hope and moments where you are not so happy. There appears to be an ever increasing interest in developing new therapies for MDS. This is good. Good luck and share your experiences with us. I might also add that it took me close to two years to realize that a lot of side issues should be discussed with my primary care physician and in my case my endocrinologist. My experience has been that the oncologist is so focused on the disease that he either doesn't have the focus or the understanding of all the side issues that arise from this disease and the treatment side effects. Once again I am only recounting my personal experiences.

[Birgitta-A]

Hi Mike,
You know MDS means Myelodysplastic syndromes. Syndromes mean many diseases with some symptoms in common. That's why we are so different.

I was dx when I was 67 yo May 2006 with MDS Interm-1 (RMCD) with very servere fibrosis, few cells and no signs of high blast level in the bone marrow. I have only got supportive treatment because as long as I am totally asymptomatic I won't try any kind of chemo.

My latest bone marrow biopsy in April 2009 showed the same picture as May 2006 so I continue with supportive treatment - blood transfusions, Desferal and Ferriprox (not allowed in the US) for iron overload and Neupogen injections for low white blood cells.

Good luck with w&w !
Kind regards
Birgitta-A

[Dick S]

Originally Posted by Mike M

I was diagnosed to have MDS last November and later, specifically RCMD, risk level 1. I have come to realize that I'm at the very begining on this disorder and wonder if there are others in a simular situation or where diagnosed at this level. Also is there any information on how this will progress? Thanks.

Don't fell bad and don't feel you are alone. This disease is ever progressive and no two people slide down the slope at the same rate, I am a case in point.
I have been DXed with the same as you, MDS RCMD, and that was back in Feb. 2006 and I am still on the "wait and watch" list. Things are getting close for me with a 10 HGB and 31 HCT, so I feel some treatment is on it's way soon. In the mean time I just put up with the tired butt and fatigue.
Hang around here on the forum, it can be a comforting feeling and good luck on your journey with us.
See my tag line.

[Mike M]

Lindajo, Mike, Birgitt-A & Dick, thank you for your very thoughtful comments and information. Although my Doctor and others have indicated that there is no clear path that my MDS will take or when changes will occur, your consistent message that MDS is a family of disorders and effects most every individual differently has been helpful. During the first months after getting my initial diagnoses, I did do a great deal of research including reading material, getting second opinions and talking to others with MDS. I also found a good book, “100 Questions & Answers about Myelodysplastic Syndromes” by Dr. Jason Gotlib, which provided us with a great deal of good information. During this period my doctors were encouraging me to focus on staying healthy and getting on with my life and after we began getting slightly different information from the doctors we were seeing, we decided to take their suggestion and took off for six weeks – had a great vacation and forgot about MDS for periods of time. Unfortunately, shortly after returning home I had emergency abdominal surgery, unrelated to MDS, to stop major bleeding from a non-ulcerated arterial lesion in the stomach which required approximately 17 units of blood and seven days in the hospital. In part this was significant because I have been extremely healthy for my 67 years and never in a hospital for a significant event – boy did this take my mind off MDS. My Doctor was happy with the way my body responded to this incident and demanded that the surgeon give me additional platetes during my stay in the hospital. Needless to say, my blood counts were all over the wall for some time. Things have settled down and I’m now back to weekly or monthly blood tests and still on a W&W status. Again thanks for your comments and hope this isn’t to much information. Mike M

[Dick S]

Mike M, I am little older than you, 74 to be exact. I know I'm out of the running for a SCT or BMT because of my age. You are borderline age wise from what I understand, but your docs may find it a viable option for you.
Docs tell me my only hope is Revlimid or Vidaza to try and put it in remission. Right now I would settle for a few blood transfusions just to get some temporary relief.

I am flying up to Virginia this weekend for my youngest son's wedding and will have all three of my kids together, so I think it's time for a long talk, 'cause I think they all need to know what's coming. I have found that a lot of people on the outside of this disease just plain don't understand and cannot fathom what we go through. Alas!

Hand in there pard, we are all in this together and as we trudge this happy road of destiny we only have our family, our friends and each other to lean on. And "lean on" I must to maintain a modicum of sanity and dignity.
HTH

[Dick S]

Mike M, I answered your PM. Click on at top right below your name.
Thanks ...........Dick

[Mike M]

I will share my benchmarks with you as I go along this path.

Mike M

[Mike M]

Well it's been an interesting ride. In March, of this year, I had emergency surgery for a stomach bleed which the doctors said was unrelated to my MDS. 12 weeks later they performed a encoscopic procedure to see how my stomach was healing – they didn’t like what they saw and they performed a series of ultrasounds and finally a CT-Scan in July. After a CA19-9 blood test reading of 5,127 (should be no higher then 37), they had identified a mass on the tail of my pancreas. This all happened over one weekend and the following Wednesday I went into surgery again to remove the spleen and tail of the pancreas. I find out this week about my future chemo treatments as they were not able to take out all the cancer. My doctor thinks that my blood count drop (disorder) may have been caused by the tumor – at this point I’m not sure. Has anyone had a similar circumstance? Best to all.

[Birgitta-A]

Hi Mike,
Too sad with the pancreatic cancer! Did they not perform a bone marrow biopsy when you got your dx? As far as I understand blood count drop but not the special bone marrow changes with dysplasia (bad shaped cells) can be caused by solid cancer tumors.
Kind regards
Birgitta-A

[5Q-spray]

Mike:
So sorry to hear about your cancer! I wish you lots of comfort! I was diagnosed with MDS 5Q- in June of this year, so I am just trying to read all I can about it! Last doctors visit Thursday, they want to remove my spleen. I will have to wait 2-3 wks before surgery so I can get all the vaccanations. Just wish I knew how this is going to progress.

Felica
----------------------------
MDS 5q- diagnosed June 09

[Mike M]

Birgitta, thanks for your note and thoughts. I did have a BMB and I was told it contained some abnormal cells and I was diagnosed with MDS and/or ITP at a very early stage. I plan on discussing this and other issues with my doctors later this week. I guess it’s possible to have all of it. Will keep you posted on what I find out. Mike

[Mike M]

Felica, thanks for your thoughts. Part of my operation was to remove the spleen and I seem to be doing ok. I got several vaccinations right after the surgery and before I left the hospital. I don’t feel any different than before and they had me up and walking the day of the surgery. I was in the hospital 5 ½ days and home after that with a sore mid-section, but walking every day and each day is better then the previous day. All the best to you. Mike