Mom's Visit to the Doctor Today

[Suzanne]

I am hoping someone can shed some light for me on what exactly is going on here.

Mom saw her hem/onc today and her hemoglobin is down to 6.8 now! She has been taking Aranesp injections weekly and her hemoglobin went up to 7.9 from the original 7.25 and now it is going down. Her white cell count is also low. They did another bone marrow biopsy becauce the doctor wants to make sure this isn't transforming (his words). He is waiting for another blood test on Monday before deciding whether or not to transfuse ?? Does this sound right to you? The doctor also said the bone marrow biopsy will tell if there is any iron in her bones and if it isn't she will go on iron injections. Some of this sounds pretty crazy to me given what I have read. I am trying very hard to edjucate myself on this disease and treatment so I can advocate for my mom, but it is so hard. I am wondering if he is treating her right. I always thought (but again I don't know much about this disease) that AML had to do with blasts? How can he "think" this is transforming just by a pin prick in the finger? I would appreciate any input anyone has.

Thanks for your help, as aways!
Suzanne

I am editing to add:
Her original diagnosis was a very mild MDS, can it transform this fast?

[Zoe's Life]

Suzanne,

He may be waiting to see if her counts are still down before transfusing. They always test right before a transfusion. Maybe Monday was the soonest they could do it? I don't have any iron in my bone marrow, but my doctor said it is because of the MDS, it isn't iron deficiency. After some research, my theory is that when bone marrow is making lots of rbc's (even defective ones which die in the marrow) it uses up lots of iron. Some diseases are like that, I don't know if it is true for MDS also.

I am confused, did he just do a bone marrow biopsy? Because then you asked how he could tell if it was transforming by using a finger stick. The biopsy would reveal if it is transforming. I have never had a finger stick. Even my CBC's are done by drawing a tube of blood from my arm.

You just never know with MDS. Do you know if she has chromosome damage?
That can tell you much.

Zoe

[Suzanne]

Zoe
Sorry for the crazy post! I type the way my thoughts are...racing...all jumbled lately. She saw the Hem/Onc today for a bone marrow biopsy, had one 3 months ago and there was no chromosome damage at that time, mild disease. They are re-doing the bone marrow biopsy because her counts aren't so great and now her whites are low. He wants to make sure she isn't transforming to something more aggressive (those where his words). He took blood by her finger today and then had to take it by the vein because they didn't like it. So I guess when I say he is diagnosing a transformation by a pin prick in the finger it is because he doesn't have the bone biopsy back yet, just done today. Can they get a suspicion it is transforming just by her blood work?

Suzanne

[Birgitta-A]

Hi Suzanne,
You know I think your mothers low counts can depend on that she has fibrosis in her bone marrow not that the disease is transforming to AML. It´s very good that she didn´t have any chromosome changes 3 months ago .

Do you know her platelet count ?

They can look for blast cells in blood and in bone marrow but I think they only look at HGB when they take a test with a "pin prick in the finger".
Kind regards
Birgitta-A
69 yo, dx MDS May 2006, June 2006 dx myelofibrosis due to fibrosis in the bone marrow till Sept 2007 when my dx was changed to MDS again due to very low WBC:s that didn´t recover without 2 Neupogen injections/week, asymptomatic

[Suzanne]

He said plateles are normal. White's are low and Hemoglobin 6.8

I find myself wondering if this is the right doctor for her. She is very comfortable with him, but I don't know if he really knows how to treat this disease. There is an MDS doctor of excellence literally 5 doors down from him....Dr. Steven Allen and I think she should get an second opinion from him. She gets very upset when I suggest this because she likes her current doctor and he did a great job with her lymphoma. How do I make sure he is qualified??

In the meantime we have tons of unanswered questions and are left wondering how does mild disease become totally out of control in 2 months???

[Ruth Cuadra]

Hi, Suzanne.

If your mother is unwilling to go to Dr. Allen herself, her current doctor might be willing to consult with him on her behalf. It's a good sign that the current doctor treated her lymphoma well, but with secondary MDS (i.e., MDS that follows treatment for another cancer), the circumstances do require an MDS specialist. To begin to judge if he is qualified, ask him how many MDS patients he has treated in the last year, two years, or five years. You want someone experienced in treating MDS.

While it is possible that a mild form of MDS could become aggressive within a couple of months, it doesn't sound like that is the case with your mother because it sounds like her counts are drifting lower, not crashing. I think the doctor overly alarmed you by saying her disease might be "transforming", which usually means becoming leukemia, instead of something like "progressing" or "changing".

Let us know what questions you have. There are lots of people here to help.

Regards,
Ruth

[Birgitta-A]

Hi Suzanne,
I don´t think your mothers MDS is totally out of control only because her HGB and WBC count are low. Both these symptoms can be treated . If Aranesp doesn´t have effect she could have transfusions with packed red blood cells and if her WBC:s are low she could have Neupogen or a similar drug.

Ask for all results and write the figures down. What is her WBC count? The very important white blood cells called neutrophils are often about 60 % of the WBC:s. If the neutrophils are very low your mother has to be very careful and avoid all kinds of infections.
Kind regards
Birgitta-A

[Suzanne]

Thank you all for your responses. Mom has to have her blood count done on Monday and they will decide then whether or not to transfuse her. I will let you know how it goes. In the meantime I have just now realized that Dr. Raza is extremely close (about 20 minutes in a car) from where we live...I think it might be worth a trip to see her. I just have to figure how to tell mom's current doctor I would like records and a second opinion without upsetting my mom or him.