Are we jinxed or what?

[Al's Wife]

We started out this morning by getting labs done at our local oncologist's office who was supposed to fax the results to Moffitt in Tampa for the clinical trial. We of course asked for a copy of the labs. The platelets were 3,000!!!! We immediately contacted Moffitt and they said to have our local oncologist set up a transfusion ASAP. Our local oncologist's nurse said that he would not set up a transfusion, for Al just to go home, and if he started bleeding to go to the emergency room.
We called Moffitt back and they said for us to just go to the ER on our own and tell them he needed platelets. So we spent all afternoon in the ER getting labs drawn again and waiting and waiting. After about three hours the doctor came in and said that the hospital's labs came up with platelets of 13,000 and he said he believed his lab was probably more accurate because they do a lot more blood draws than the oncologist's office. So we came home without having anything done.
But in the morning we are going to Quest Labs and have labs drawn again because we need to know if there is an error somewhere and what the platelets really are.
This has been so frustrating, not to mention the stress of thinking Al's platelets had really tanked. Of course 13,000 isn't anything to get excited about, but it beats the heck out of 3,000!!!
We are seriously considering (and if it is a lab error on the part of our local oncologist's office) changing to another local doctor. We have just lost the connection with him and aren't at all happy about the treatment - or lack of treatment since we decided to go to Moffitt. They won't return phone calls, messages, etc., and now this!
We're both exhausted after such a long and stressful day.

[Debbie W]

and then send the info to your doctor at Moffitt? Our local hospital did this and then sent the results to my husband's doctor in NY and he was able to bypass the local doctor's office. He still likes and uses the local hematologist, it was just easier.

Looking for another doctor who will work with Moffitt sounds like a good plan for the future, sorry for the long and stressful day and hoping that the local doctors numbers were wrong.

[Neil Cuadra]

What a lousy experience!

I don't know if it's true in this case, but I'll mention that some doctors are over-insultated by their staff and may not know about lousy service their patients receive. You said a nurse said you couldn't get a transfusion. Was the doctor even involved in that decision? Does he know that the lab results were (apparently) wrong and what a scare and huge inconvenience that was for you?

Before giving up on your oncologist you might write, fax, or ask to speak to him by phone to give him a rundown of what happened. Perhaps you'll end up parting ways but on the other hand perhaps he'll be grateful for the feedback and will want to fix the problems you encountered.

[Al's Wife]

Thanks for your suggestions Neil and Debbie. Once we see what the platelets are tomorrow, I am definitely going to let the local oncologist know what transpired. The nurse said she had talked to the doctor but I don't know that for sure. I have had issues with her in the past.
But we are either going to get the local hospital to fax the results to Moffitt or Quest Labs if we are satisfied with their lab tomorrow for future draws.
Another thing that is strange is that my husband actually had an early appointment with VA this morning for a yearly visit, since they furnish a lot of his meds, and he had to have labs done there. They called tonight and said his platelets were 8,000 and he needed to come in for a transfusion. We told them we had just got home from the emergency room at our local hospital and the platelets were 13,000 so they decided not to transfuse.
So today Al has had a platelet count of 8,000 at 11:00 a.m. at VA; 3,000 at 1:00 p.m. at local oncologist; and 13,000 at local hospital at 4:00 p.m.
So I guess you can see why we are going to get another blood draw in the morning from Quest.
Sometimes all this becomes really overwhelming and today was certainly one of those days.

[Chirley]

Platelets are so variable and are easily affected by how the blood was collected.

I've had blood taken from my port and then blood taken from my arm 5 minutes later and the results were different by over 40,000. On another occasion blood taken from my port was repeated an hour later and had dropped by quite a lot. Turns out the second sample had platelets that had clumped together and were therefore not included in the count.

Platelet counts can be unreliable but I think it pays to repeat the count just before any transfusion is to be given just to verify the previous result was accurate.

Regards

[milliken2]

Linda;

That's why we go to the local hospital for Earl's blood draws. The ones at the hema/onc's office are - in my opinion - not reliable. They do not have the equipment that a hospital lab does - and I have been in the lab when the 'testing' was being done. No centrifuge at all, and to me - you won't get a good result unless the blood in run through a centrifuge. We have a standing order at the hospital - and I have Earl wait in the lobby while I go and get the tubes from the lab - then off to short stay where the RN does the blood draw. Not a finger stick like in the hema/onc's office - since she is a lab tech, and can't draw from the mediport. Also - when I gave them the order - I had all 6 of his docs fax number on it - his hema/onc, our PCP. the rheumatologist, the VA doc, his APS doc, and Dr. Sekeres at the Cleveland clinic. They copied the order and the fax numbers - and I make sure it gets to where it is needed.
If there are clumped platelets - you need to make sure you have a lavender and blue top drawn so that they can be properly tested. Earl gets a CBC w/diff and a retic count twice a week. He also gets tped and cross matched in case he does need blood. If you are gettinng Al's tubes or if you are with him - you need to make sure they do a gold top for the CBC, a pink top for a type and cross match, and a blue and lavender one for the proper platelet level. You also need a red waste tube and the vacutainer.
Earl has a permanent blood band with his type and patient number, but your still need a screen and cross match done - and that is only good for 72 hours. In other words - if it is drawn today - you can still use that if Al needs blood within the next 72 hours.
I have become well acquainted with the staff at the lab, and also the nurses who do his blood draws - and they let me know where his levels are within an hour after the draw. If needed - have the Doc write on the order "Copy to Patient" - that way you will get it, and not have to go through medical records, etc.
Good Luck to both of you.
Beth

[Sally C]

Hey Linda,
You have gotten some great information and advice already. So all I'm going to say is that you and Al are in my prayers and I have great hope that things go better today and his counts will be up.
God Bless,
Sally

[sandem01]

Linda, so deeply sorry for all you've been going through. Yes, I would not hesitate to change doctors. We are thinking of changing doctors for my dad because he is acting like if dacogen and vidaza don't work, all he can do is get blood transfusions (which he is getting today). There has to be other options! He has been getting vidaza this week, and the dr. said if he had to get a blood transfusion this week, he doesn't want to keep trying with the vidaza.

[Greg H]

Originally Posted by Al's Wife

So today Al has had a platelet count of 8,000 at 11:00 a.m. at VA; 3,000 at 1:00 p.m. at local oncologist; and 13,000 at local hospital at 4:00 p.m.

Linda,

Sorry to hear about the craziness. To echo what Beth and Chirley have said, though I've never had such widely varying platelet counts in the same day, I have found both that my platelets bounce around like crazy and that they can vary from lab to lab.

Back when I was having weekly blood draws but every-other-week RBC transfusions, my hematologist's office would use one lab on the weeks when a transfusion was expected (the local hospital's lab) and another lab on the "off" weeks (the practice's home lab in a bigger town up the road).

Inevitably, the counts would be higher on the "off" weeks, and the report would always have a notation about giant platelets and a manual recount. I'm not well informed about lab technique, like Beth is, but I've always figured that meant the local hospital lab just ran my blood through the platelet-counting machine, it missed the giant platelets, and so I got a lower count. The other lab, knowing the giant platelets would throw off the machine, actually made a slide and did a count under the microscope.

I'm not sure if that could be what you ran into, but it's certainly possible.

But it's still scary when you are flirting with counts in the sub-10 range.

I hope the Quest numbers look better.

Take care!

Greg