Transfusion questions from newbie

[GaryV]

I searched the forums and have not found my question answered clearly.

Fall 2009 I have had to start RBC transfusions. I asked my doctor and nurse, who are very good, other than they don't really answer questions.

1. "Anemia with symptoms" is their standard for a transfusion. I had to go to the internet to learn the symptoms. I started reporting the symptoms (heart palpitations, chest pains, heaviness in limbs, pain in jugulars), and no tx ordered. I shut up and waited, putting up with pain. I learned that HGB<8.0 is their trigger regardless of my symptoms. My symptoms fluctuate widely. I can feel worse at HGB 8.6 than HGB 7.5. What to do?

2. Transfusions don't hold up my HGB. Is that common? Often 2 units increase only 1 g/DL and drop back down in 2 weeks.

3. For about a week after a transfusion, I sleep nearly all the time. Not the case, before the transfusion. What might that be about?

4. What happens if I stop getting transfusions? Heart attack seems likely. What about general organ failure?

I have been on Aranesp, 200 mg, injections every two weeks. MD doesn't want to increase it, but it no longer keeps my HGB up.

My PLT 19,000. Subfebrile tempurature and night sweats. Dr. said probably related to low PLT. No bleeding yet.

[Birgitta-A]

Hi Gary,
I will try to answer your questions. You know MDS foundation has a very good handbook for patients with much info about MDS.

1. Modern clinics transfuse for symptoms of anemia. Planning for transfusion should be made on an individual basis by the patient and the physician, taking into account co-morbid illness as well as quality of life issues. No universal trigger or target for transfusion is recommended. Tell them at your clinic that congestive heart failure is a common death cause in MDS and that patients with too low HGB can develop congestive heart failure.

2. It is common that we need transfusions every two weeks.

3. It is not common to be very tired after transfusions. I don’t know what the reason can be. Most patients feel better about one day after transfusions.

4. As you suspect it is the heart that will react early if the HGB is too low but also the brain that needs oxygen to function (like all cells in the whole body).

5. If Aranesp (an EPO drug) isn’t enough it should be combined with a drug that stimulates white blood cells like Neupogen – more patients respond to that combination. Here is a report: http://jco.ascopubs.org/cgi/content/full/26/21/3607

6. Your platelets are low – in my clinic you should get platelet transfusions and your doctor should look for treatment for example Vidaza. Have you seen the warning list for patients with low platelets – I have posted it many times to this forum. Low grade fever and night sweats are common symptoms in all malignant haematological diseases either you have low platelets or not.

You don’t write anything about your white blood cell count? Even if it is OK you should try to avoid infections that will lower all your counts.
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen for low white blood cells, Thalidomide and Prednisone for bone marrow fibrosis.

[Vince R]

Birgitta,
I just started with Aranesp an Neulasta 9/28/10
I will receiving 2 aranesp injections per month
along with 1 neulasta injection per month.
I will keep you posted on the results.
One thing I had some discomfort with Bone pain
with the neulasta which is a commonSide effect.
i gor a perscription from my PCP for the pain.
i'm sort of a baby when it comes to pain
I have been getting transfussed every two month (2-units)

God bless you all
Vince R.

[Birgitta-A]

Hi Vince,
Hope your HGB will increase with Aranesp!

You know it is a problem with bone pain because all drugs for pain can decrease your platelets. Perhaps you could try Neupogen injections instead of Neulasta. You have to take Neupogen more frequently but not so many patients get bone pain in connection with Neupogen.
Kind regards
Birgitta-A
Neupogen 2 injections/week since neutropenic fever Sept 2007 and 3 injections/week since I statred to take Thalidomide June 2010. No adverse effects from Neupogen.