Monday began Day 1 - Cycle 3 of Vidaza. The blood levels were up due to the blood transfusion two weeks ago so guess that's a good thing at the start of treatment. However, this morning (Day 3), I woke up with a rash at the port site, up under my neck, and when I saw rosy cheeks without makeup and no wrinkles, I knew there was a problem. Fortunately, the rash didn't compare with the reaction I had from the blood transfusion. Not nearly as bad.

The staff here is terrific. I signed in, they got me settled, Dr. K was summoned and after checking me over he felt I could go ahead with treatment as scheduled. Oh happy day! Never thought having treatment would put a smile on my face. But I really didn't want anything interfere with my treatment schedule. NO DELAYS! I want that BMB in May and since it takes a couple weeks to get the results, I'm hoping for a few weeks to visit with family and hope Bob can get some fishing in before starting up again possibly the end of June.
Thinking positive the Vidaza will work.

At this point they thought it was the Decadron, given before the VIDAZA. I guess it has been known to cause a reaction in some patients. Anyway, The dosage was lowered from 20mg to 10mg. By the time I finished treatment the rash signs were dissipating, which the RN said was due to the Decadron. That's too much for these "little grey cells" of mine to process.

In any event, we came home, had lunch, took a nap and now nothing remains of the tell-tale signs from the morning. Hopefully the rest of the week will be uneventful.

I think of all of us in our different stages of this crazy disease, one size does not fit all. Hang in there dear friends, we can do it.
Hugs to all!

Hello all, glad to see the posts from everyone. I always think about this group even though I have not been posting. I am doing okay. Feeling tired and run down and possibly starting iron infusion next week as hemoglobin has dropped. Just checking in and wishing everyone well.

LaDawn

Becky, you certainly are having "experiences." My hat is off to you for handling them so well. Of course, I understand the brass ring awaiting you.

LaDawn, what is your Hgb these days? Mine dropped to 8.7 last Tue. And why iron? I never hear anything about that in my own case. Sharon

Hi all!
Well I had my 6 month checkup yesterday. My counts were pretty good.
WBC 3.4
HGB 12.9
RBC 3.57
Platelets 75000
Even though they are all low except the HGB / my oncologists says things look pretty good and he will see me in another 6 months. They did take extra blood to do the HLA typing but he didn't say too much more about that.
So it was good news to know that any treatment is being putting off longer. The longer the better.
Hope everyone is doing good.
Take Care,
Janet

Hi all. I'm still hangin around pesterin everyone LOL. Chemo every 5 weeks and blood every two. My counts stay really low. a little over a week after chemo the WBC was 1.2, HGB 10.3 (transfusion week before) and platelets 12. Had a bit of a scare the week of chemo. I always get there an hour or so early so I can be first in and first out. I had one of those top ten ever headaches (I almost never get a headache) and was sitting there trying to hold the top of my head on LOL. One of my nurses came into the waiting area, took one look at me, came over and said your not smiling, your holding your head, your pale and your coming with me.....ok like I had any choice there hehe. They were afraid that I (with my platelets so low) was having and embulism or a stroke. So after some agreement that the ER docs wouldn't admit me just because of the low blood counts off we rushed for a cat scan. Well folks they confirmed that I do in fact have a brain and that it is "Normal". My kids say it's a medical mystery or the docs are quacks LOL. Other than that I'm plugging along. Just made the ole 67 which is pretty good considering the one doc only gave me three months about 3 and 1/2 years ago.

I may not remeber to get in here as much as I should buy all of you should know that your in my prayers all the time. Have a great week ahead and I will try to get in here more often. I am sorry about that.

God Bless
Mike

Hi All,

Seems the posting has really slowed down. I hope that is because everyone is doing well.

Mike, glad to know they confirmed you have a brain. We all know you have a great big soft heart and that's more important anyway! But seriously, glad that there was no problem with an embolism or stroke.

I am happy to report that ever since I was complaining about feeling so bad - I am now feeling pretty well. The extreme tiredness and problems sleeping have gone away. I can even do some shopping without suddenly getting overcome with fatigue (much to my husband's chagrin)!

So as much as I don't like to admit, apparently my doc knew what she was talking about saying that my hemoglobin wasn't low enough to cause all that. So whatever did cause it - seems to be gone now.

I am now really looking forward to warmer weather and spring - and soon getting out on the golf courses again.

Praying that all of you are feeling better or holding your own.

Sandy

Cycle 4 Vidaza postponed!!
Today was a real disappointment. I couldn't believe it when Dr. K. said my white blood count was too low for first treatment. He wanted to put it off a week and see what happened.

However, in the next breath he said that my Hemoglobin and Hematocrit were in the normal range, that of course I expected due to the blood transfusion last Tuesday. I have to tell you it's been over 5 years since HGB & HCT have been normal. How can I feel so good and still be in danger of getting sick due to the immune system being so low?

My bone marrow biopsy scheduled for Friday May 25th. with a followup on June 5th to determine the next phase of treatment.
It has been a roller coaster ride for sure.

Stay well everyone.

Joe's 4th round of Vidaza was postponed also due to low platelet count. We waited 2 weeks and then went for it. Used to be Hgb was way low and now we are struggling with platelets. Dr. L. (MDS specialist) told us if this continues through round 5 (scheduled for next week), we are to call him and he will put Joe on Eltrombopag (this is supposed to bring platelets up). This is one scary disease! Just when you think all is well, something else goes wrong.

It's my turn to ask questions of our leaky boat crew.

Had my usual blood draw yesterday, & my Hgb fell to 7.9. I went thru the 8's in one month, so I'm guessing that Aranesp has stopped working.

The nurse went to see my Dr & he scheduled my first blood xfusion for this morning. I understand it takes 3-4 hrs. Wish me luck that I don't have any reactions.

I have way too many questions about xfusions & sudden drops to know where to start. Other counts are WBC 2.5, RBC 2.03, & hematocrit 23.6. My platelets are still in the normal range (223).

Any advice, clues, etc? My Dr is not very informative, sort of laissez faire. I thought I'd have more time before I got to this stage, so I'm a bit unprepared.

Pardon me for not responding to recent posts. Sharon

Sharon: Just have a couple seconds. So sorry that you have joined those of us who have become transfusion dependent.

It usually takes about 90 minutes to test and type your blood so I have that done the day before I have the BT. The transfusion itself can take up to 6 hours if you are receiving 2 units and I hope you are. If not when they finish the first unit ask them to call the doctor for a second unit. If you don't get it this time, make sure you ask the doc next time.

My doc has a standing order for 2 units whenever I need a transfusion. I was able to get 2 units in Alabama otherwise I would only have received one. Best of luck to you. More next time.
Hugs!
PS:
Don't wear anything long sleeve in the event you get a rash.

Thanks, Becky. Yes, I had two units. My typing was done the day before when I had my usual blood test/shot.

Would have been 4 hrs, but a slight disaster at the hospital made one of the treatment rooms unusable for the day, so it seemed like forever to get everyone taken care of.

Good ol' benadryl, tho, helped put me out for much of the time (in between clanging bells & beeps, loud conversations, & BP checks. BP was pretty darned low, even for me. How long before it makes me feel better? Don't feel any different yet! Also, you didn't say what your reaction was from the xfusion, or if you did, I missed it. Sharon

Sharon,
I became transfusion dependent starting Sept. with repeat transfusions in Nov & Dec. Once I became dependent I knew I would start treatment of VIDAZA or DACOGEN. It was the bone marrow biopsy in December that determined the next phase of treatment as I went from 1st to 2nd level of this disease.

After receiving 8 units of blood in 6 months time period, it seems my body rejected the new blood. I had fallen asleep and when I woke up my back was solid mass of red and I noticed a rash on the inner arm
and boy did I itch from my fingers to toes. They stopped the transfusion and the gave me benedryl to control the itching.

No problem with the last transfusion a couple weeks ago, blood was irradiated first and I didn't have any problems. You should start feeling better in 24 hours. The doc should be watching your blood levels on a regular basis, I was going every 2 weeks. Not sure when you had your
last bone marrow biopsy but I'm thinking you are due for one soon.

We are all in different stages of this disease and we all respond differently to treatment. And, doctors have their own methods of treatment. Hang in there.

Becky Jean,

Thank you for the information. This next phase is all new to me, & I have lots of questions.

I was disappointed about the transfusion for the first two days, because I felt no different. But the third day! I'd forgotten what it was like to feel well. I had energy, strength, & joy. Bless the donors. I used to be one, sigh.

Now, of course, I'm wondering about the next steps. I have so little in the way of hard facts that I can't see straight. I've searched the net, but everywhere I go, it's "every case is different." Maybe so, but I'm the sort who likes to plan ahead. I'm a positive thinker, but I'd rather know reasonable guesstimates as to my lifespan & course of action.

In the process of letting my family & close friends see the figures on my blood work so that they understand my situation, my daughter is now terrified that my demise is imminent. What can I tell her, aside from the fact that "rumors of my demise are grossly exaggerated"?

Is is worth it to travel to a major MDS center like Mayo or MD Anderson for a consult? Should I have another BMB? (Only had the original one in May 2008.) Will I still take Aranesp along with transfusions? How often will I probably need blood? And what about iron overload? Will I have to do chemo?

I had to do a little math before I could be sure, but I will be 73 in a couple weeks. My original diagnosis was refractory anemia with ringed sideroblasts. As I've mentioned before, I presume mine is inherited, as my father died of it at nearly 75, See how close those ages are???

Another question has been bothering me. Does vigorous exercise harm you? I do line dancing twice a week, & it's getting harder & harder. Our 84-year-old gal can do it, why can't I? I'm struggling, & today I sweated till my hair was soaked, even with my new blood. Does this make it hard on the heart? (Took a 2-hr nap afterward, & feel okay now.)

I'm not asking you for all my answers, Becky Jean, just hoping someone will read my post & offer some advice. I don't see my Dr till May 15. And so far he could be a charlatan for all I know, as he hasn't given me any information that I haven't gotten for myself. Just "go home and enjoy life." Sharon, the newest vampire

Sharon:
Blood transfusions are great! I forgot what it felt like with normal blood counts. I wouldn't worry about iron overload for awhile but I do think there is a need to have a base line. I have the gene from my mother and father, so overload is a problem for me, I've been dealing with it long before the transfusions.

I also think there is a need for a bone marrow biopsy repeated once you are transfusion dependent. I had one in July and then another in Dec when I started having numerous transfusions. The BMB determined the need to start treatment and started Vidaza.

I feel comfortable with my doctor and don't think anyone else would do
differently. You may want to check around for another Hematology-Oncology doctor.

I do agree that you should go home and enjoy life!
Hugs!

This disease is different for everyone as is treatment.

birdmom if you haven't been to this website please go there. really good people there and a wealth of information. one thing to remember though hon is just because you had to have 2 units doesn't mean you are dependent yet. you may not have to have more anytime soon! continue to think positive. no undue stress now you hear? *smile*

here is the site. http://forums.marrowforums.org/forumdisplay.php?f=7