Preparation for Vidaza

[Peachy]

Hello all -
First a bit about my husband (68). He began feeling tired 3 years ago. Blood test revealed low red counts (13 to 10.6). Blood transfusion recommended at 11.7, which he refused as no one could tell him what was causing the counts to drop. We were finally referred to a local cancer center and the first bone marrow aspiration was done Apr 2012 with red count at 10.6 w/1% blasts (RARS). We took the wait and watch approach to start.

During our travels last fall we had the privilege of meeting Dr. Steensma at an MDS seminar in Boston. Being new to MDS Dr. Steensma answered many of our questions. Later we had another blood test and his RBC had dropped to 8.3. On our return home we chose the option of Aranesp shots vs blood transfusion as his iron was very high already.

Long and short of it he has been getting an Aranesp shot about every 2 weeks since October. (I think of Aranesp as a bandaid that tricks the marrow into making more red cells, even if they do not mature.) It seems to help in the short run with the red, not the white.

Just last month we had an appointment for a second opinion at Mayo in Scottsdale, where most of what we had heard was confirmed. Another blood test run and the smear showed 5% blasts. Another bone marrow aspiration revealed 4% blasts, confirming that the disease was probably becoming more aggressive - now classified as RAEB 1. We made the choice to wait until September to begin the Vidaza due to more travel plans this summer. (Our philosophy - travel as far and as fast as we can while we can.)

At this point his RBC (3.39), whites (2.1) and HGB (9.3) are low, while platelets (261) are in the normal range. Chromosomes and Fish are in the normal range. We plan to continue Aranesp until time for Vidaza.

Now for my questions -
For me I would like to have any suggestions on the best way to prepare for the Vidaza. Am thinking his counts will probably tank and his counts are like a yoyo already. (I keep a chart)

He is looking into anything natural that will help the blood and to prepare for the Vidaza. Does anyone have suggestions?

We are also looking into what i think is called the "mini transplant" via stem cells. He has no living siblings and is getting to the point where a bone marrow transplant will be risky due to his age.

Guess there is no short way to tell a story and I thank you for your patience. I have read many posts and realize that many of you are in much more serious situations that we are at this time, yet know each of you that reads this realizes it is all frightening no matter where you are in the process. I will keep reading and absorbing all the information that has already been shared.

I am grateful to have a forum in which to ask and share.....Deb

[Birgitta-A]

Hi Deb,
Good that you have been consulting the very best specialists in MDS!

Aranesp is sometimes combined with Neupogen (increases the WBC) or similar drugs for better effect.

Remember that all infections can decrease count so be very careful when you travel.

Some members of this forum have tried wheatgrass juice that is supposed to decrease iron overload. Do avoid drugs from Asia because they can contain metals, pesticides and coli bacteria. All drugs that really decrease iron overload will increase the HGB eventually because they reduce the free radicals in the bone marrow.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[Cheryl C]

My haematologist told me that Neupogen is not an option when you have blasts as it can increase them too. Has anyone else been told that?

[Peachy]

Thanks for the responses. We will be careful traveling. ANC 1.1 which is still a pretty good number (I think). We are traveling self contained (no airlines!) and will be extremely careful. We will get blood tests along the way to check and keep an eye on the whites. We chose for the moment not to take Neupogen for the moment and the doctor agrees for now.

His iron levels are coming down - not sure why, but we are glad they are. Will give the wheatgrass juice a try. Thanks for the tip regarding the connection between HGB and iron. I had never heard that before.

Both of us have been caregivers for cancer patients and have seen the effects of being over medicated, so we tend to not take meds unless absolutely necessary.

What is MDS interim 1? I can't seem to keep all the terms straight - there are so many! Deb

[Birgitta-A]

Hi Cheryl C,
You know blast cells are immature blood cells and we should have them in our bone marrow but they should be less than 5% of the cells.

Here is a study about Neupogen and an EPO drug without increased risk for AML: http://jco.ascopubs.org/content/26/21/3607.abstract

Hi Deb,
ANC less than 1.5 is so low that you risk infections but many patients manage well with a low WBC count because their WBC function well.

MDS Interm-1 is a kind of low risk MDS - there are so many types of classifications so it takes a long time before you understand them all.
Kind regards
Birgitta_A

[Peachy]

Thanks. Still trying to figure out which low counts to watch and when he have more change of getting ill because of them. I really appreciate all the info.

You are right about all the classifications - seems like I learn new ones all the time and now know yours.... thanks so much for all your insights....Peachy

[Peachy]

Hello Birgitta-A - I really thank you for your posts and feel like an idiot right now. As I was reviewing again I realized that I had a typo -My husbands ANC at this time is 1.7, which is still low, but not as low as 1.1. Thanks for everything. Deb

[Birgitta-A]

Hi Deb,
Hope your husband's counts will hold! ANC 1.7 is much better than 1.1.

You know MDS means Myelodysplatic Syndromes. Syndromes means diseases that have some symptoms in common for example low counts in one, two or three cell-lines and mis-shaped blood cells in the bone marrow. There are many types of MDS and this makes the treatment so difficult because we are so different.

Don't feel that you at once should understand the classifications of this disease (actyally these diseases).

You should follow
hemoglobin (HGB)
white blood cells (WBC)
the most important of the WBS called neutrophils. The neutrophils are about 50% of the WBC. ANC means absolut neutrophil count.
platelets

Kind regards
Birgitta-A

[Peachy]

Hi Birgetta A -

I finally charted all his blood numbers for up to 2 years. I am just now getting to know what all the "initials" mean and which ones are important, so I appreciate your heads up.

One of the ones that always confuses me is the size of his cells - they are very large (RDW). They have grown from normal around 16 to 30 and continue to get larger. I have not received an explanation that makes senses. Are you familiar with the large cells? Deb

[Birgitta-A]

Hi Deb,
The red blood cell distribution width (RDW) is a measure of the variation of red blood cell volume. Usually red blood cells are a standard size of about 6-8 μm. Higher RDW values indicate greater variation in size. An elevated RDW (red blood cells of unequal sizes) is known as anisocytosis that is very common in MDS patients. I don't think you should follow this variable but focus on the three important counts and keep an eye on the ferritin level.
Kind regards
Birgitta-A

[Peachy]

Thanks Birgetta A - Makes sense. Thanks for the explanation. My eyes are on the top 3.....Deborah