All Counts Are Falling Fast
 

July 1, 2013

I have been on VIDAZA for 30 months, and it had worked well for 20 months. The past 10 months all of my blood counts have been a continuous decline, and today the numbers are: WBC 1.1 RBC 2.18 PLT 15 HGB 8.0 ANC 0.5. My oncologist scheduled a RED CELL transfusion and a platelet transfusion for Wednesday as the hospital couldn't do it tomorrow. How dangerous is it to wait another day?
Both my MDS doctor and Oncologist seem to believe the Vidaza is losing it's
effectiveness. Both your thoughts and comments welcomed.

MagicBob

Bob,

I'm very sorry to hear that your counts have had such a downward trend.

Those are fairly scary counts, especially your WBC/ANC and your PLT. Your RBC/HGB counts are low too, but not as far off the charts. If you have to wait another day for transfusions I'd be extra careful to avoid falls or bumps tomorrow, and see if you can arrange for your transfusion appointment to be early in the morning.

I hope you can continue to avoid sources of infection, since your ANC indicates that you're at risk.

If your counts stay this low, I hope the doctors will give you a new recommendation and not tell you to wait and see what happens.

Magic Bob

My transfusion level was at Hgb 7.0 so I think you are OK to wait one more day. My initial platelet level for transfusion was 10, but after treatment started my platelets were below 10 for months. I was on amicar and it helps to clot your blood. I wish you well and hope that you and your doctors can quickly come up with the next treatment!

Bob my wife is sort of in the same boat, execpt she has AML, Our counts have been low for months, we have been getting blood and platelet transfussions once per week for at least 5 months, today we found out that the decitibane may not be working anymore ( I wont lie, were tripping out, but deep down inside I know these agents dont work forever ), for us we have been lower and waited but its not a good idea, now that your counts are that low it is VERY important to stay on top of what you put into your body, handwashing, simple things like swimming in the summertime and injesting the water. All these things can lead to an infection, when your that low ask your doctor about anti fungals and antibiotics ( if you not allready on them ) We get platlets when there below 10 and blood when Hematocrit is under 25%, we are also on Amicar for platelets. Not trying to add fuel to the fire but has you doctor said anything about your mds transforming into aml ? We will be praying for you, YOU ARE NOT ALONE.......Billy

All counts are falling fast
 

Neil, Scott and BillyB,

I thank you all for the input, ideas and encouragement. I am being extra careful with my body today and anxious for tomorrow's arrival.

Your sharing is really appreciated and I am forever grateful to you all.

Living in my own bubble,
MagicBob

I wholeheartedly agree with all the above. My husband's platelet count has been below 15,000 for over a year and Amicar has worked great for him. He has had a couple of falls which resulted in bad bruising (blackeyes and big bruises) but he has not bled out, which I think we can thank the Amicar for. I know it doesn't work for everyone; but, thankfully, it has for him.
Don't give up, whatever you do. Ask if the doctors will switch you to Dacogen. My husband had no response from Vidaza when he had MDS diagnosed over three years ago. But when he transformed to AML last August, he decided to try Dacogen (even though the doctor only gave it a 2% chance of working) and he has remained stable. He has transfusions about once a month.
Be proactive. If I've learned nothing through this difficult time, it is you have to be your own advocate - or in my case - my husband's advocate.
Good luck and God bless.

All counts are falling
 

Yesterday's numbers are: WBC 0.9 - RBC 2.28 - PLT 15 - HGB 8.0
ANC 0.2. BMB scheduled on July 19th. In past six days, I received
2 units Red Blood Cells and 24 units of Platelets. Quite concerned
with these numbers; could it be converting to AML?

MagicBob

MagicBob,
I don't have the answer to your questions - I just want to wish you well.
Keep the faith!
God Bless,
Sally

You're clearly not making enough lasting blood and platelets. But to say that you'd transformed to AML would require knowing the blast count in your bone marrow and that it be 20% or higher.

Sally, thank you for the response, concern and wishes.

I am curious, was your town named after Chesterfield cigarettes?

MagicBob

Thank you Neil, I will update you all about 10 days after the July 19th BMB.

MagicBob

Hi again MagicBob,
Your question prompted me to investigate the origin of the name for Chesterfield cigarettes. It's actually the other way around - the cigs were named for the county I live in - Chesterfield County, Va. Here's a link - I hope it works. https://en.wikipedia.org/wiki/Chesterfield_(cigarette))
Learn something new every day!
Again, I wish you well - keep us posted.
God Bless,
Sally

All the best for the transplants, guys. Will be thinking of you and looking forward to hear how you are going.

Patti, thank you for the response and the insight about Dean. I am also 76 years old, and like Dean very weak and short of breath, appetite is good.
If you don't mind sharing today's CBC, I would appreciate it.
My wife and I will keep you both in our prayers, MagicBob

Bob, Try to stay positive, I know it can be trying at times, but you have to stay focused, sometimes blood counts can be all over the spectrum, sometimes it just a bump in the road.....sometimes not....me and my wife are praying for you, because we know how exhausting these times can be......Peace.....Billy and Tina

All counts are falling
 

Thank you Billy and Tina, first and foremost, my wife and I have you in our prayers. Also thank you for the encouragement, as this ride can be quite
bumpy.

MagicBob

Hi MagicBob,

Dean is feeling down right now, worried about what is happening, also concerned that he is now dealing with AML. His BMB is early Monday morning, and we won't find out the results until July 29th.

Dean counts as of yesterday were:

WBC - 1.1
ANC - 0.6
RBC - 2.10
Hgb - 8.0
Plat - 14

The doctor gave Dean an injection of Procrit. No Neupogen, he told us because the white blood cells are the leukemia cells, and he doesn't want to stimulate those cells right now until we find out what is happening. Dean will probably need transfusions next week, but his oncologist doesn't want to do any transfusions before the biopsy.

Dean's doctor does tell us, depending on the results of the biopsy, that he may put Dean on Vidaza, or see if he can go into a clinical trial. Waiting and wondering is so hard, isn't it? Dean's last treatment with Dacogen was the end of May.

Keeping you and your wife in our thoughts and prayers. We will let you know when we get the results of the BMB, we are scheduled to see Dean's doctor on July 22 for the first results and the 29th for the rest of the results. Will be thinking of you on the 19th. Lots of good wishes are being sent your way.

Lots of hugs, Patti and Dean

Bob, are you on any anti fungals or antibiotics ?....sometimes when your platelets run that low it dosent hurt to keep an eye on your stool......PattiDean you are correct about the neupogen right now ....you dont want to rev up the bone marrow right now ....you want to keep it surpressed

Thank you Billy, Up until a few weeks ago Dean was almost receiving Neupogen daily. His WBC has always given him trouble, would go up for a few days, then fall right back down below one, same with his ANC. Dean's platelets have been low too, usually in the 40's or 50's and at times would go below 10, he would get platelets then.

The RBC and Hgb has remained fairly stable ever since we found out Dean had MDS, although when he was diagnosed they were lower than they are now. This recent drop became a concern for his oncologist, and the fact that Dean's platelets are not recovering either, they have stayed low for over a month.

The doctor has stopped the Dacogen until after the BMB, and will make a decision about Dean's treatment after we go over the results. The doctor also has mentioned that he feels Dean may now have AML, but says he won't know until after the BMB.

Waiting and wondering is difficult, Dean is scared, but trying so hard to be positive. It is so difficult to see our love ones go through terrible illnesses and not be able to take the pain and suffering away. I know Dean and I are not alone, so many families are dealing with illnesses and accidents and feelings of fear and helplessness. Dean and I say our prayers every night and ask for peace and comfort for all those that are going through these very difficult times.

Thank you again for your reply and support. We are learning as we go along, that's for sure.

We will keep you and your wife in our prayers,

Hugs,

Patti and Dean

Patti and Dean, thank you so much for all that you are sharing. I can not believe that are Counts are almost identical, also that we are the same age, and we both have BMB's scheduled for next week.

I am going through the same emotions as Dean, as my doctor has been thinking that AML could be rearing it's ugly head.

As you can see we live in Mechanicsburg, Pa, this has been our new residence since Sept. 2011. (to be near our daughters) We lived in Sarasota, Fl. 18 years, and at The Villages, Fl. 3 years and it was there that I was diagnosed with MDS.

While living Florida, my MDS doctor was Dr. Dr. Komrokji at Moffitt Cancer Center, a very knowledgeable MDS doctor and is part of the team with Dr. List.

Another tie-in with your area is my Post name 'MagicBob', I am a magician and I attended many magic meetings in Clearwater. Sad to report that I
don't have any magic tricks in my hat to get rid of this baffling disease.

My wife Dru and I are praying for you guys, a wishing good BMB results.

MagicBob

Billy, thank you for the info. My oncologist hasn't prescribed any antibiotics, however I will ask him on Monday. I am not familiar with anti fungals, or their purpose.

MagicBob

Bob, add another strange tie-in to your list. Dean and I lived in The Villages for three years before moving to Clearwater. We moved to Clearwater because my mother was here and her health was failing, have been in this area since January 2011.

Dean doesn't get on the computer very often, although he knows I am on the forums, and I keep him up to date on the posts I make and those I receive. I told Dean about your posts, and like you, he said that the two of you do seem to have a connection. It is nice to have these forums, so we don't feel so alone.

I notice that Billy posted a reply to you about antibiotics and anti fungal medication. Dean was usually on them for a week after his Dacogen treatment because his WBC was always so very low. Since stopping his Dacogen he hasn't taken any antibiotics or anti fungal, thanks to Billy's post, we realize that we have to ask Dean's oncologist if he should begin taking them again since the WBC take care of fighting infections.

Dean's doctor has told us that he may refer Dean to Moffitt, thank you for giving us the name of the doctor that you were seeing. We won't feel so lost if we do go to Moffitt, we will ask about seeing Dr. Komrokji.

We will pray that there will one day be a Magic Trick to cure this terrible disease.

Love and hugs and prayers to you and your wife, You will be in our thoughts on the 19th.

Patti and Dean

We take Noxafil ( antifungal agent ), Because Tina has Prolonged Neutropenia, I dont know what the guidelines are for having to be on it.

Sorry I cut my post short, neutrophils are a type of white blood cell that kill fungi and bacteria. The Leukaemia Foundation has a lot of good info on MDS that is easy to understand, I found it usefull to get an understanding of some of the terminogoly, so when the doctor was flooding our heads with all this stuff it wasent so scary, because I had a small understanding of what they were talking about

BMB
 

Patti, my BMB results were quite disappointing, as my Oncologist informed us that MDS is worsening, and the transfusions aren't raising my Red Cells and Platelets. Also, for the first time Blasts have shown up (5-10 per cent)
Current CBC numbers: WBC 0.8, HGB 8.0, PLT 15, ANC 0.2

I ask what is the next step, his response "I would try Revlimid, but you are not eligible as your Platelets are too low". I then searched articles about the drug, and here is what I found: Revlimid Trial In Leukemia Halted – No Immediate Impact On Drug’s Approved Use In MDS Expected - mdsbeacon July 19, 2012.

August 5th, I have an appointment with my MDS Specialist at Johns Hopkins, and hopefully he has magic.

Our Love and Prayers,

Dru and Bob MagicBob