Mikey, I hope this transfusion will be hi-test. Sit back and relax and filler up. Good luck and let us know how you do. Keep smiling. :)
Jean

Mike, I certainly admire your attitude when it's obvious that you are suffering in many ways. Glad your fever went away, & now it's vampire time for you.

Posh, a camping trip sounds like just the thing to help you deal with everything. Hope it worked.

Jean, I don't understand. Are you saying that you will go off Aranesp for a while? I have to take mine every other week.

I'm off today to attend a family wedding down south. I'll be back next Tues.

Hi Birdmom,
I have been receiving the Aranesp shots every 2 weeks since January. My apptments. were all lined up in advance. The last shot scheduled for me is June 10, with a followup consultation in September , nothing else in between. When I go this coming Tuesday I will certainly ask for an explanation. I will at least need CBCs on a regular basis, I would think. Just remembered that my oncologist mentioned a while back that I may need to have another bone marrow biopsy down the road to compare to the first one. Not gonna worry about it. Only time will tell. Thanks for your comments.
God Bless

Hey guys,

Your all an inspiration!

When I don`t understand a symptom, I come here to see what you too are going through.
I`m still low risk RA...now five years and am told will probably die of stroke before I die with this....but.....still have to deal with effects of cell changes. Last visit to hemotologist, red ct. was 11 but I`m fatigued easily...and platelets bounce up and down from 109,000. down to 77,000.....maybe that`s being age77. I walk daily and don`t take on more than I can do and no matter....I have to quit and just sit by mid afternoon and lying down by 5 o clock which is not good!
I have been having night sweats for three years which is unusual for me. Can anyone tell me if they are going through this with low risk myelodysplasia. Doctors don`t tell you anything and seems to be no big deal to them but for we who are going through it all.....would be nice to have explanations for symptoms. If any of your are experiencing these symptoms, let me know. Frustratred because can`t find answers even though have lots of questions when with Hemotologist.
Hang in there guys!

Peggy Mills

Hi Peggy, I too was diagnosed in November with low risk mylo,RA. Getting any kind of info other than that from the Doc is like pulling teeth! I amn 39 and get very winded & tired real easy as well. I still manage to push on though. The only thing that I know (and I have not been back to the Dr. since December)the Hematologist told me nothing to worry about no excess blast's, my bone marrow is full, WBC count is good blah blah, blah, however my Hemoglobin is very low (7 out of 14 last checked) and not producing at the right rate. So I guess there is such a thing as having low risk Mylodysplasia/RA. Gonna make a follow up appt this week. hope that helps. Also he did manage to finally say "were not sure what this is other than the fact that you do have Refractory Anemia"...??? These Doctors I swear...

Bluespyz and Peggy, I am so sorry that neither of you are getting the answers that you need from your doctors.My drs are fabulous. If you live anywhere close to Boston, bypass The Dana Faber and try to get an appointment with Dr. Miller at Tufts.He is very well known, highly respected, and one of the best in his field, our field.
Bluespyz, I am 37 and was diagnosed last August. My hgb was 5 when I was diagnosed. I have been on Revlimid since September and my hgb is now 14.9. My wbc and platelets are normal and always have been. My diagnosis is actually low risk mds. I will be on Revlimd for as long as it works and then I will have a bmt-hopefully that will be a long way off! :) I am surprised that with your hgb at 7 you are not being transfused. My doctortransfuses anything below 8. What treatment options are they offering to you?

Thanks Birdmom, Had the fever around 99 to 100 all week with the ole night sweats but now a couple of days after the transfusion I'm starting to feel better, get an appetite back, etc. The WBC on the labs for the transfusion was down to 1.1 but is two weeks after chemo so near normal for me. The fever probably a combo of that and being out in the heat again.

Peggy and Blue I wrote about this once before that you have to spend significant time to be sure your an informed patient. Your doctor has the responsiblilty to answer your questions. I have a fantastic Oncologist who walks in the room and does not leave until we are both satisfied that both of our questions and or conerns are covered and understood. I have had a couple of sessions that went 45 minutes to an hour. I do the research on the net then have a list of important, not trivial, stuff. Had I not been informed and asked questions once when I was in the hospital (they didn't understand my low blood counts were normal) the staff doc would have given me a medicine that had the probability of putting me into full lukemia. He refused to call my oncologist, which I did, and end result is I refused his treatment.

Keep your treatment in your hands. If your doc won't answer your questions then I suggest you spend some second opinion time with someone who will.

God Bless ya ole leaky boat crew. Keep rowing they find more and more corks for pluggin those leaks all the time and getting this ole boat to shore.

I'll let you explain that one Birdmom LOL.

Peggy...I think I am low risk MDS. My doctor in Illinois put me a med risk but when I got to MD Anderson in Houston, my doctor said I was low risk. I have been on oral Vidaze since April 2009 with great results. It took a long time for me to get the good results from the Vidaza but it was worth the wait. My blasts are now down to 2%, down from 7% when I started. I receive transfusion every 5 to 10 weeks. Even with the transfusions, my MDA doc said I am in complete remission. I also have night sweats and even find the days sometimes unbearable. I'm not sure if it's the chemo or the disease.
Best of luck to everyone. We will get through this.

I described in a devotional I put out how the other day, when I went in for my transfusion, my mind was not on the light but on the darkness from this junk we have. It had only been two weeks since the previous one, WBC was way down, I had been fighting the fever for days (still getting eveing spikes and night sweats) and couldn't hardly walk down the hall due the breathing problems. The point was that no matter how strong your faith there are going to be days that you say Really Lord? Are you sure?. This was one of those days and became an example of how the Lord knows all about whats going on and comes to us from a different direction when needed.

One of the fantastic group of nurses who fuss over me every time I go in there came in to check on me and spent some time telling me how she had just lost her father and how hard that had been for her. She told me of a link to a song by Laura Story called Blessings that had meant so much to her and helped her along. I hadn't told anyone that I had my head buried in the ole darkness that day but here she was unrelated to nursing stuff helping me along. I had the laptop and went out to listen. It's a fantastic song full of strenght and hope. The link is
http://www.youtube.com/watch?v=1CSVqHcdhXQ&feature=related

You will enjoy the video on the story behind the song as well. I also enjoyed the song "Grace" very much.

I know a lot of us out here, trying as hard as we do to be positive and optimistic, have our times where it seems we're surrounded by the dark side of this junk. I hope these will bring you some of the same strength, help and blessings that they have for my nurse friend and myself.

God Bless everyone and have a great week.

Mike

Mike, Thank you for sharing. I'll definitely check out the site so I can listen to that song. I can only imagine how hard it must be at times to wonder why me. I know I often wonder why Dad. His life has changed so drastically over the last 2 years. I just keep reminding myself that God is here with us and I thank him every night for each day I am able to spend with my father.

It's sounds like you get excellent care at the hospital. Which one do you go to for your transfusions/treatments?

Julie

Hi Julie,
Thanks. I never did ask the question - why me. I did ask a good friend who preaches all over the world what he thought the Lord would say if I did ask Him that. He said even though the Lord doesn't cause these things He would probably say why not you. Makes sense to me. Ain't nothing more special about this ole boy than anyone else.

What I was describing is that no matter how strong our support and faith are when the reality is that this stuff is, even slowly, going a direction we don't want that we some days wake up and with a bunch wrong, and dwelling to much on the negative so tend to say REALLY...Are you sure LOL. The Lord knows the right direction to let you know he's there for you. A line in the "Grace" song says " My child I love you. As long as you seek my face you will walk in the power of my daily sufficentl grace." Gooood Stuff.
With your situation I'm sure you'll enjoy the "Blessings" song too.

God Bless
Mike

Hi I'm Laura and new at posting anything anywhere, but I have Mds and have been looking at this site for some time. All of the treatment I have tried just don't do a thing for me. I receive 4 units of blood a month since diagnosis in aug 09. I am getting set up for transplant as they are testing my siblings now. I just wanted to introduce myself.

Hi Laura Welcome and we're glad your here though like all of us certainly would wish you didn't need to be. It's a fantastic bunch of folks here - we call ourselves the Leaky Boat Crew. You've already seen that your going find support both from experiences we have faced and support from the love and understanding of our going through the same things.
God Bless and we look forward to sharing with you and enjoying your company.

Mike

Laura,

I add my welcome to Mike's. It's disheartening to know that none of the treatments worked for you, but at least you are young enough to be a transplant candidate. I hope you get a good match among your siblings.

Our crew consists of young whippersnappers all the way up to the elderly. Of course, I'm not counting myself in the elderly population just yet, lol!

Mike, I too never asked the question "why me?" In many ways, I feel lucky to have this disease rather than another. It would be nice if none of us had to have any disease, but that's not very realistic. Only a few die of "nothing." Meanwhile, our leaky boat crew members are all making the most of life while we can, which is the plus side of having MDS: appreciation of our time on earth.

My latest count Tuesday went up to 10.9, so I'm beginning to get used to roller-coaster readings.

Hi Everyone and welcome to the group Laura. I pray you find a match.

Received my bi-weekly Arnesp shot on Tuesday and my Hgb was 10.2, which is really good for me, but I am still tired all the time. I am scheduled to continue the shots every other week and will consult with the oncologist in September.

Take care everyone and keep writing.
Jean