Ah, Posh, good to hear from you again. I've been feeling great ever since the xfusion, so I hope it lasts for a while.

I checked out the website you mentioned, at least briefly. MDS being such a variety of diseases, it's difficult to match my own case with others.

Becky Jean, how are you doing?

Sharon; Thanks for asking about me. I'm disappointed right now. I thought I had things all worked out, daughter visit from Utah, different events, etc.

I've missed a couple events I really wanted to attend and one again on Friday that I may have to cancel as well. Best laid plans...

My treatment for the 23rd was cancelled due to low white count. Again a week later, no treatment. I'm waiting to see on May 7th. Not sure why I didn't receive a Neulasta shot. I was so taken back I forgot to ask both times. Who knows what will happen on the 7th. Problem is our daughter will be here on the 9th and I was sure I'd have treatments behind me when we scheduled and I would be feeling decent. I had a BT on the 17th of April so the HGB is pretty good. I started out with 12 after the transfusion and last week it was 10 so still decent. Will see what it is on Monday.

I have a BMB scheduled for May 25th but may have to reschedule.

There are somethings you can't chage. Trying to keep a positive outlook, taking one day at a time and looking forward to a fun time with my daughter and her hubby.

Stay well everyone. Hugs!

You must be very frustrated, Becky. It is so disorienting to have all your plans disappear in smoke!

Still, you will see your family, & hopefully you'll feel well enough to enjoy the visit. Hugs, Sharon

Just thought I'd let you know the latest. White count still low. No Vidaza. The bone marrow biopsy schedule for May 25th was moved up. It'll be this Friday, May 11th. Needless to say I am frustrated! But life goes on, make the most of every day even if it is in the doctor offices. Have a great week. Hugs!

I have now had at least 22 treatments (5 days every six weeks) of Dacogen and am still feeling perfectly fine. I lead a very normal life, golf etc. and am not tired. I was getting the Dacogen every 28 days but my counts weren't recovering as quickly so 6 wks works for me. I actually love it! I feel so much better not always being in a doctor's office. I keep my mind busy, keep moving and am very blessed. I'm going to be 72 in July. Prayers and support does help. I also get a shot of Nulasta within 24hrs. after my treatment which helps to boost my wbc, it keeps working for 2wks. Wish you all a good day and hope.

Becky Jean, tomorrow is your BMB, right? I'm sure you're looking forward to it--not!

Patsy, welcome to the leaky boat crew, & it's wonderful to hear that treatment is working well for you.

I also am still feeling fine after the xfusion. I see the Dr next Tues.

Meanwhile, I've scheduled my first cataract surgery for next Wed, so I'm spending a lot of time in Drs offices lately.

Sandra, You are right. My BMB is tomorrow, and I really am looking forward to it despite the inconvenience. Every one deals with this disease differently. I thought everything was going well considering...and then to learn that I was unable to have Cycle 4 was a real disappointment. It'll be a couple weeks before I get results. But I'm ready to move on to the next phase.
Have a great weekend everyone.

Patsy: I'm glad the Dacogen is working for you. With MDS diagnoses no two are alike and everyone responds to treatment differently. I've had 15 treatments (completed 3 cycles every 4 weeks). My last treatment was March 30th. As of May 11th the WBC has not recovered by itself. I had hoped for a Neulasta shot but the doc was reluctant to give for fear it would stimulant cancer cells. I had a BMB on Friday to determine the next phase.

Hope all had a Happy Mother's Day.

I was wondering if anyone has tried Herbalife products. My neice is promoting their products and I was curious if it would help with my energy level and fatigue. I already take several vitamins such as fish oil, flax seed oil, vitamins c & d. Let me know your thought on this or any of you have tried them.
Hope everybody had a great Mother's Day. Seems like everyone on here has been very busy lately.

Becky: I hope you get good results on your latest BMB. I don't return to see my Dr until October. That seems like a long time down the road. Somedays I just need to nap a few times but I resist the urge.
Take care to all!
Janet

Hi everyone,

Saw the Dr Tues, & my Hgb rose from 7.9 to 9.7--quite a jump! I knew it had to be, because I've been feeling so well. We also discussed another BMB in my future, but nothing has been settled. Whatever the future holds, I'm sure enjoying the now.

I had cataract surgery Wed, so my eye is definitely the center of attention at the moment. I'm still waiting for the dilation to go away, but I do see improvement each day.

Becky Jean, love your photo!

Janet, I haven't tried the Herbalife products, so have no opinion. Sharon

Sharon; glad the cataract surgery went well. And happy you are enjoying your new found energy. That's the good side of a transfusion.

I had two units today myself. I don't have the results of the BMB yet.
Actually, I cancelled an appointment for Monday. My fella had a chance to go fishing for a couple days so I gave him a kitchen pass. He's been chauffeuring me to doctors all year and I felt he needed some time off. Nothing was going to change with the results, they would still be there the following week. I figured if something was drastically wrong they would contact me. It's not that I'm trying to be nonchalant about it but then again, maybe I just don't want to know,
However, I can't keep my head in the sand either.

Glad you liked the picture. My daughter uploaded it while she was here. She took the photo last July when we were on our Alaska cruise and took a side trip to Butchart Gardens, Vancouver, Canada.

Have a great weekend everyone.

Hi Sharon,
MDS and my family are pretty new. I was just diagnosed in April and like many of you, have had the multiple rounds of blood tests, a bone marrow biopsy, and am now starting seeing a hematologist every 2 months. Luckily, I've been put in the low risk group, but know from extensive readings on MDS, that this could change at any time.

My goals are to be around a few more years, be thankful for those around me, and to be an encourager for all. I already feel that this is a great blog site as it puts me closer to those going through what I am about to go through. I not only wish to get closer to those who are going through MDS (I don't know anyone with it now), but also to be an encourager for those with this malady.

In addition, I've started another blog (http://alsmdsblog.blogspot.com/) that is aimed at those who do not know much about MDS and is more faith and encouragement oriented. More later. Al

Hey all
Still kickin around. Counts are still in the ole flusher but mostly doing good. Getting blood every two weeks (actually in day surgery right now getting a refill). I hope you all are doing great (it looks like a lot of positive notes in here). Keep on bailing and keep the ole leaky boat afloat my friends. I will try to check in here more often It's been a busy few weeks with transfusions, chemo, grandbabies, getting ready for Mama having some testing done and a few other things LOL.

God Bless and keep the smiles going all.
Mike

thought I would pop in to say hello and see how everyone is doing. I am doing reall well despite it just being the one year mark for me but had my eyes opened up and feel pretty good about how Dad passed now.
On a great note I have a new grandson and I was blessed to be able to travel and actually made it on time to witness his birth! I am a happy grandma!

like Mike said...keep bailing and keep the leaky boat afloat! luv to you all! I would not have made it without any of you!

We of the leaky boat crew are deeply honored to hear from you again, Mike. There's nothing like spending a few hours getting refueled to bore you enough to post, huh?

And Posh--another special person posting the same day! A whole year has gone by, has it? I'm so happy that you have a new grandson to lavish love & attention on. I've just returned from seeing our granddaughter, almost 1-1/2 years now & toddling, talking (some language I don't know), & eating like a pig. She likes to stick a fork in her fruit, then pull the fruit off it with her chubby little hands to pop it in her mouth!

Becky Jean, I've been to Butchart Gardens also--beautiful place. I don't blame you for not being in a big hurry to get your BMB results. Do you have them now?

And last, but definitely not least, welcome to Algbett, our newest crew member. You will find folks in various stages of this illness, so at whatever stage you're in, someone is sure to have something helpful to say. At the very minimum, we are here to listen!

My first cataract surgery has been a success. This one required some extra techniques because of three prior Lasik surgeries on that eye. Today I scheduled the other eye for late June after I return from my cruise. Even with only one eye done, I'm not wearing glasses & doing fine. Sure takes my mind off MDS!!! Sharon