Quote:
Originally Posted by tytd
Dear Patti and Dean,
I have followed your story and am very sorry that the Dacogen is no longer working for Dean. I felt compelled to write and tell you to perhaps confront your oncologist about his strick cut-off of "below 8" for transfusion. It sounds to me like he is treating a number instead of a person. I think some oncologists apply the same guidelines for RBC transfusion that they use for patients on chemo ( who may have a normal bone marrow capable of regenerating normal RBCs) to MDS patients whose marrows are sick. I would refer him to a recent article by Dr. Fenaux entitled "How I treat low risk MDS". ( I know Dean has high risk disease). In speaking to the question about RBC transfusions when other therapies fail he writes, " anemia will eventually become resistant to all available drug treatments,......and will require repeated RBC transfusion. For those patients, it is recommended to administer transfusions at sufficiently high Hemoglobin thresholds (ie, at least 8 and 9 or 10 in cases of comorbidities worsened by anemia (e.g. coronary artery disease, heart failure) or in cases of poor functional tolerance). In addition, a sufficient number of RBC units should be transfused each time, over 2 or 3 days if needed, to increase the hemoglobin level to greater than 10 and thereby limit the effects of chronic anemia".
I know he is talking about patients with low risk disease but I think this would also apply to patients like Dean to preserve his quality of life. I think, too, that in males, especially elderly males who might have heart and lung issues, that a trigger below 9.0 instead of below 8.0 might be more reasonable especially if he is symptomatic. Does he get 2 units at a time?? If your oncologist will not listen to you maybe you could have Dr. Lancet at Moffitt speak with hem about this issue. Do not be afraid to stand up to your M.D. -- you are partners. Good Luck tytd
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Wow, thank you tytd. I am going to print out your post and bring it with us to our appointment with Dean's oncologist on Monday.
Dean is at the hospital right now receiving a transfusion of PRBC and platelets. He woke up this morning extremely weak and having difficulty breathing, so I drove him to the emergency room.
The doctor there called Dean's oncologist, and thankfully he agreed to let Dean have the transfusion. Yippee. I just came home to take care of our "little girl" (a 13 year old Chihuahua), and when I left, Dean was in the chair sleeping while the platelets dripped into his arm.
What your article stated is basically what Dr. Lancet at Moffitt told Dean, that he should receive transfusions when he is symptomatic, not by what the numbers show. Dr. Lancet said that some folks are fine with hemoglobin at 8.0, and others show symptoms and need to have a count of 9.0 or more.
Dean also has heart problems, he has had a few heart attacks previously, and open heart surgery in 1998. He recently went through a thorough exam by his cardiologist who told Dean his weakness and breathing issues are not related to his heart, there has been no changes with his heart in the last few years.
Dean did have a transfusion about two weeks ago, and he felt stronger for a few days, so it did help. His last transfusion was Wednesday, his counts were so very low, and yesterday when he had his labs, his counts did go up, his platelets were 13 and his hemoglobin was 8.1, which is why his oncologist didn't want to do another transfusion, he wanted Dean to wait until Monday to see what his counts would be.
Dean was so exhausted and weak, he didn't want to wait another four days. He just kept saying he is so tired of being tired and if he is going to keep on feeling so weak, he wants to give up. This morning he cried all the way to the hospital, telling me he was sorry, when he can't help what is happening, so he shouldn't apologize for anything.
Thank you again for passing the information on to Dean and I. We really, truly appreciate you taking the time to share this with us!
I am going to get back to the hospital. Hoping Dean feels better! :-)
Lots of hugs!
Patti and Dean