Doctor visit yesterday

Well the results from yesterday's test reminded us that this disease is like a roller coaster. There are going to be some serious ups and downs. After last week's relatively good results, yesterday's number were not very encouraging. 

The Red Blood Cells and Hemoglobin were about the same from week to week. This is good because with the Hemoglobin above 10, the fatigue is greatly diminished as there is more oxygen in the blood.

The disturbing numbers were the White Blood Cells and Absolute Neutrophils.  The WBCs were down to 1.3 and the Abs Neutrophils went down to .7.  These are considerably below normal and increase the risk of infections, etc.... So we're basically back to the same numbers as early July.

It also means that I'm back under house arrest and not allowed to interact face to face with other people. The warden (aka Carol) will make sure that I don't stray from these instructions. 

The game plan for right now is to continue with the weekly Procrit and Neupogen injections and the weekly blood count tests. We'll do this for another 8 weeks and if the WBCs do not show improvement we'll start looking at other treatment options.

So to try to sum up all of this, while I'm feeling better the numbers are not indicating improvement. Like I said it's a roller coaster and we just have to take the bad with the good.

Thanks for your prayers and support.
 
Fred

August 21, 2013

Good news this week. All of the Blood Counts moved in the right direction.
Here are the results:

White Blood Cells  2.2  Still below normal, but improving.
Abs Neutrophils      1.5   At the low end of normal.
Red Blood Cells      3.1   Still below normal, but improving
Hemoglobin            10.5  Still below normal, but improving
Platelets                   72     Still below normal, but improving

So it looks like the weekly Procrit & Neupogen injections are beginning to kick in.

Next Tuesday will be a day at Mayo Clinic for more extensive testing and consultation with the Dr.

Thank you for your well wishes and prayers.

Fred   

update

The Blood counts this week are kind of a mixed bag.

The White Blood Cells improved to 1.2 and the Abs Neutrophils improved to .8

The Red Blood Cells dropped to 2.8 and the Hemoglobin dropped to 9.6

The Platelets improved to 60. 

In talking with Mayo, I expressed my concerns with the RBCs and questioned if the Procrit was working. The response was that it takes multiple injections to see improvement. They cannot give me an exact number on how many injections it will take to see improvement, but I would have thought 4 injections over the last month would have been enough to start kicking in.  They did say that without the injections in all probability the numbers would even be lower and that's how it should be looked at.  On a positive note, at least the counts are not near the danger zone of requiring another hospital stay & transfusion.

I guess I'm just looking for the quick fix and a return to some sort of normalcy. I did ask if I started
drinking Red Wine on a regular basis if that would help. They just laughed and never did answer the question. I'll be reviewing the Red Wine subject in 2 weeks when I'm up there for my day of testing.

That's the update for this week. The injections of Procrit and Neupogen will take place on Thursday.

Thank you for your prayers and well wishes.

Fred  

Recent update

The weekly Blood Tests showed a slight improvement over the previous week. 

The White Blood Cells came in at 1.1    Normal is 4-10          
The Absolute Neutrophils were .6          Normal is 1.5 - 6.5
The Red Blood Cells were 2.9                Normal is 4- 6
The Hemoglobin was  9.7                       Normal 12-18         
Platelets were 56                                     Normal 150 - 450    


The WBCs and Abs Neutrophils will never make it back into the normal range, but if the numbers could be doubled, it would provide a little bit of an Immune System.  

So here's hoping and praying that the Procrit (Boosts RBCs & Hemoglobin) and the Neupogen (Boosts WBCs and Abs Neutrophils) weekly injections will really start kicking in and help the Bone Marrow generate new Blood Cells.

Update

Here's an update from this week's CBC Blood Tests.

The Hemoglobin and Red Blood Cells were down slightly. This surprised us since Thursday's Procrit injection was the 3rd week of injections to help the Bone Marrow generate more RBCs. We were expecting a break even at worst like the previous week. The Dr. said the drop in the counts were not significant and it will take a few more Procrit injections to see a positive result.

Of Major concern is that the White Blood Cells dropped to .9 and the Absolute Neutrophil Count dropped to .575. These are very low and is an indication that not only is the Bone Marrow not generating RBCs, it's also not creating WBC's. This means the immune system is virtually non existent and contact with others needs to be avoided. This will be treated with weekly injections of a drug called Neupogen.

So now, the treatment will be weekly injections of Procrit and Neupogen. Very expensive medication, but let's hope these injections start boosting the counts and the talk of a Bone Marrow Transplant can be put on hold for a few years.

The injections will be done on Thursdays and then on the following Monday, another CBC will be performed to measure the counts and see the progress.

Update July 23rd

This is Fred with a recap of yesterday's visit at Mayo. My blood counts remain below normal, but are better than before the recent hospitalization.

First for the little good news there was :  The Leukemia is in Clinical Remission.

As a serious side effect of the Chemotherapy, I have now developed Myelodysplastic Syndrome. This is another Blood Disorder and is just as serious/deadly as the Leukemia.  This is the same disease that Robin Roberts from ABC TV developed after her treatment for Breast Cancer. Google her name & you can read about MDS and her struggles.

The MDS is suppressing my Bone Marrow from creating enough new Blood Cells. This is the cause of my Anemia. The plan is to treat this with weekly injections of Procrit to boost the Blood Cell production with the hopes that within 3-6 months the Red Blood Cells & Hemoglobin will  show improvement. If the Procrit does not work, we will start serious talks about a Bone Marrow Transplant.

Procrit does not boost the White Blood Cells and they are also a concern. The Dr. wants to wait another month or two to see if they can improve on their own. If there is no improvement, then we will try weekly injections of Neupogen to try and boost them to normal.

I'll be getting weekly Blood Tests so the progress or lack there of can be measured.

Yesterday's blood work

Fred's blood work yesterday showed improvement.  His hemoglobin was up to 10 (normal 11-18) and his platelets came up to 45,000 (normal is 150,000 to 450,000), but better than 36,000.  His white blood cells are at 2.4 (normal is 4.5 to 10.5) and his red blood cells are at 3.02 (normal 4 - 6). 

We were elated that his numbers were up, we were just hoping they were the same as Saturday's numbers when we left the hospital.  Praying they keep going up.

Thank you blood donor!