And we wait……

[camiboxer]

Took my dad to his Dr. appt today, the one that WAS supposed to fill us in on specifics regarding his bone marrow test. We still have no info.
The test was done on July 21st and whatever part was supposed to tell us the % of blasts and about chromosones has not yet come in.
I got copies of everything including todays blood tests. The Dr. told us that there were no blasts noted in the pathology report but then later said that he wouldn’t make any conclusions until the other report came in, hence no knowing what type of MDS he has.
Another two weeks before the next visit.
They are testing his EPO levels, mentioned that if they were low they may opt for the Epo drug (can’t remember the correct spelling). If the levels were normal they may go the tx route. Dad says he feels fine and is not tired so who knows.
They kept him on his Plavix and Asprin -325mg-. I questioned this twice. His platelets are in normal ranges, actually increased since his last test on 7/21. I don’t know what makes those change?
All of the other misc numbers, RBC, WBC etc…have all headed down.
Still confused as I was last week when we got the original diagnosis.
I did ask about irradiated/filtered blood. They said that ALL of their orders require that, no if ands or buts. So I felt better about that.
I really liked this Dr’s bedside manner and also thought highly of his nurse practioner.
They want all of his blood work to be done at one facility, they would prefer theirs but not a requirement. Dad agreed to have it all done there even though it is a 2 hour drive, he can always visit with me since I live only about 20 minutes from the hospital. They are also testing his ferritan levels.
Well thanks for being here. I am going to AGAIN try and interpret all of these tests and reports that I got. It’s like reading Greek to me and I don’t read Greek.
Susi

[Jerry]

Susi …

Was this Dr. Blum? The Epo drug was probably Procrit or Aranesp. Remember to make the chart that we discussed. Keep your spirits up, there is a long future ahead.

Jerry

[eve]

hi susi

my dad has his blood tested every week – he would never have the strength to drive 4 hours in one day just to get his blood count – i am glad to hear that your dad has that kind of endurance – my dad sees a local doctor every week who is only 10 mins from his house and is affiliated with a local center of excellence hospital – once a month we drive into nyc and he has his meeting with the doctor that started him on the vidaza – both doctors are given copies of all tests and procedures my dad undergoes

it might not be a bad idea to set up a meeting with a local doctor just in case of an emergency -ask your dads hemodoc if he can recommend someone locally

good luck
eve

[Caroline]

Hi Susi.

Whenever my Dad has a bone marrow biopsy the test results take 6 weeks to completely come in. The Oncologist does the test in his office and then sends it away to Toronto to be processed. I don’t know if it is normal to take 6 weeks or if the labs in Toronto are overloaded with work. Toronto is our province’s capital and is a very large place.

Best Wishes
Caroline

[camiboxer]

Jerry– Yes this was Dr. Blum. The package I requested that includes a patient diary arrived yesterday and I already charted all of the new numbers, starting fresh from today.

My dad lives in a VERY rural area. They don’t even have 911 services. The closest facility for blood testing is right around 45 minutes away. I am sure that this current Dr. will be able to put him in touch with someone closer IF the times arises when he no longer feels well enough to make the trip. (see the “IF”?, I have the power of positive thinking!).

For now it makes him feel better to plan on driving, he was a truck driver for 30 years and he loves driving. He swears that he feels totally “normal”. Much better than he did prior to his open heart nearly 6 years ago in 2000. I only pray that he remains feeling well. He has both of his church congregations praying for him as well as many family & friends. I have also asked my close friends to add him to their various prayer lists and we are all keeping the faith.

It is extremely hard to see a man who you adore and love so much show signs of dispair. I caught the smallest glimpse, a nano-second of something in his eyes today that crushed my heart. I lost my mom when I was 12, (I’m 39 now), and my dad is my everything. It really sucks to not be able to fix this. I know you all know how I feel.
Susi

[Naomi]

Hi Susi:
Where in Ohio does your dad live? If it is in southern OH, maybe it would be closer for him to go to Pittsburgh (Center of Excellence)than to Columbus. I know that you live in Cols area.
I moved from there 6 years ago because I could not find a doc who really knew anything about MDS. I also have a son who lives in Dansville, NY and that also helped my decision to move here.
I hope all goes well for you and your dad. Just take it one day at a time.
Naomi

[camiboxer]

My dad is in southern/southeastern Ohio. PA’s center would be even farther for him. There is a center of excellence in Ohio, up at the Cleveland Clinic. That is our next option should we need and his current/new doc said that they work closely with one of the Dr’s there.

[Author]

Posts