Need help understanding labs/diesease progression

[amykdb]

Hello-

First of all this site has been so helpful to me. Reading over past posts has been so educational. Thanks to all of your for sharing your experiences here and building a community of resources and friendship!

My mother was diagnosed this past March with MDS or AA; they are treating it as MDS. Her labs have been off for about three years now. She had a very bad case of herpes zoster in 11/2006, and since then (or maybe even before) her blood counts have been compromised. The earliest lab report I have is from 4/2007 and shows: WBC 4.1, RBC 3.27, HGB 11.3, HCT 33.8, PLT 260. She held at or around these numbers until just before Christmas 2008. On 12/11/08 her CBC showed: WBC 2.9, RBC 2.8, HGB 10.3, HCT 31, PLT 179.

She was not referred to a hematologist until January 2009. She was in chronic pain after the herpes zoster, and they just basically ignored the labs that indicated a coagulation disorder. When we finally saw a hematologist, they completed 2 BMBs and determined that she has chromosome abnormalities: +1, der (1;7) (q10;p10) [4]. She also has giant platelets, abnormally formed cells, and is extremely hypocellular (less than 5% cellularity).

In April 2009, her hematologist diagnosed her as intermediate 1 or 2 and said that she has about 3 - 5 years to live. She is currently 64 years-old. I questioned his prognosis based on the chromosome 7 deletion, and he said that chromosome 5 is the one to be concerned about. So, I clearly question his ability already... Anyway, he started her on 200 mg aranesp injections on April 10th, and they just moved her up to 300 mg on May 7th. Now, here is the very concerning part, take a look at how much her labs have changed in just the past few weeks. Is this at all normal? Should he be looking to see if it has progressed to AML? It seems to me that her levels are dropping quickly, especially since they held steady undiagnosed at low-levels for such a long time.

On 3/31 (pre-aranesp), her CBC showed:
WBC 2.5
HGB 8.1
HCT 24.1
PLT 187
RBC 2.29
RDW 17.2

on 4/15, her CBC showed:
WBC 2.5
HGB 8.1
HCT 24.3
PLT 205
RBC 2.24
RDW 20.4

on 5/14, her CBC showed:
WBC 1.9
HGB 7.4
HCT 22.4
PLT 199
RBC 2.07
RDW 22.5

Please let me know your thoughts, and be honest. Thanks for reading this.

Amy

[Vera W]

Hi Amy, I don't know anything about aranesp. Have you researched it personally? I know with some of these drugs your counts will go down before they go up. What I was going to tell you is if you are not happy with that doctor go on line research doctors. Go to a bigger City, a medical center.. a teaching college,find someone who specializes in MDS..Call around there are alot of really good doctors and it is hard enough to have this disease. your mom should be very happy with her doctor!! I had RAEB II, 11-12% blasts. My doctor NEVER told me I could die in ANY amount of time.. He said untreated that I could progress to AML and he gave me tons of options including transplant. Your mom is 8 years older than me..she is not to old for a transplant! Within one week of my DX I was offered a clinical trial, vidaza and a transplant option.. Now i am in complete remission and waiting for my transplant! Also my doc monitors my blood counts like a hawk..have you asked her doc if it is normal for the counts to go down? Mine said that it meant the vidaza was working and it did quite well! These doctors are there to work for you!! If they make you(or mom) feel hopeless find someone new..

[amykdb]

Hi Vera-

Thanks for responding. It sounds like you have a great doctor. Congratulations on your remission!

I did look into aranesp, and I could not find anything about counts going down as a reaction to the treatment.

I go to as many appointments as I can with her, but she lives in Southwest Michigan, and I'm northwest of Chicago. I wish I could attend all of the appointments, but it's just not possible with work and kids and the distance between us.

When her hematologist did the first BMB, he though it was AA, and sent her to the University of Michigan. They did another BMB and said it was inconclusive between the two syndromes, but the doctor at the University wanted to treat her with cyclosporine. When my mom went back to her local hematologist, he decided to start her on aranesp. I inquired about a bone marrow transplant, and he said, "I wouldn't do it if I was her." He thought that aranesp would be easier on her than cyclosporine, and I'm sure it is. But I am not sure that it's effective.

I have begged and pleaded with my mom to see better doctors. I work in medical diagnostics and could pull some serious strings (I cover marketing for hemostasis and hematology). She says that she likes her doctor and that she trusts him. She doesn't want to travel, even to Chicago. I have been pushing her since her labs came back abnormal several years ago to see some good doctors, and she just won't listen. They don't have the best doctors in southwest Michigan... I just don't know what else to do.

Thanks for your help.

Amy

[Ruth Cuadra]

Welcome to Marrowforums, Amy. We're sorry you have to be here but glad to know you found useful information for understanding your mother's diagnosis.

I agree with Vera that the doctor should not be telling your mother that she has only a few years to live. As you know from reading this forum, people can and do live for many years with good quality of life after they are diagnosed with a bone marrow disease. In just the last couple of years, huge strides have been made in developing new drugs can help keep MDS at bay. The only true cure remains a bone marrow/stem cell transplant, but there is a lot that can be done for patients when a transplant is not possible or desirable. It is important to choose a doctor with experience treating MDS. Our list of U.S. Treatment Centers by State can help you identify major centers near you.

From the blood counts you've shown us, the drop in your mother's HGB despite taking Aranesp seems significant. Also, the drop in her WBC means she should be especially careful to avoid any sort of infection. Her platelets seem pretty stable--small variations from test to test are normal. Her increasing RDW (red cell distribution width) is indicative of increasing anemia. Taken together, it does seem that her doctor should be considering the possibility of other treatments beyond Aranesp.

I hope this helps you. If your mother's health is not compromised by other than her MDS, she should expect to do very well on one of the currently available drug treatments (Vidaza, Revlimid, Dacogen).

Regards,
Ruth Cuadra

[amykdb]

Thanks so much, Ruth. His only response to her decrease in counts was to increase her injection from 200 to 300 mg.

I know that my mom does not want a blood transfusion until it's absolutely neccessary. At what point does low hgb and rbc cause severe organ damage? Is there a guideline as to when someone must get a transfusion, i.e. hmg of 7.0?

Does anyone know what labs for AML typically look like? I wonder if he should a another BMB?

Thanks to everyone for your responses.

[lindajo]

Typically you need to be below 9.0 hmg to get a transfusion. The fluctuation in her blood counts is common.

Mine have been known to bounce all over the place. Sometimes a simple cold of virus will cause my counts to fall. I have had the disease 18 years and the only thing that keeps my counts stable is Spring and Fall. Extreme temperatures of summer and winter cause my counts to bounce.

I have only had infrequent transfusions 1-2 per year and antibiotics as needed for infections. Don't expect the doctors to always know what is causing fluctuations. If you get copies of all blood counts and tests and your Mom keeps track of her activities and how she feels each day, you will eventually be able to know what causes her counts to fluctuate. This will just take patience and time.

Ask as many questions of the doctors that you want. That is what they get paid for. Don't fear transfusions. They can really help your Mom fight the disease and make her feel better in the meantime.

[Ruth Cuadra]

Amy, each person has a different tolerance for low blood counts. Some people do fine with a hemoglobin of 9.0-10.0. Others can get down to 7.5 or 8.0 before the feel the effects of low hemoglobin--fatigue, shortness of breath, etc. Hospitals also have their standards about the level you have to be at for a transfusion. The trick is to find a balance for your mother between too frequent transfusions (which can leave to iron overload and other problems) and not often enough to keep her feeling well.

Regards,
Ruth

[amykdb]

My biggest concern is that with such a low hgb, that her organs will suffer due to lack of oxygen. She doesn't want to get a transfusion "until she feels dizzy". That concerns me greatly.

Thanks for your response.

[Hopeful]

Hi Amy,

I use to transfuse when my hemoglobin dropped below 7.8. That's when I would start getting side effects like shakiness.

I remember that I was also concerned about organ damage from letting my counts go low, as I was still fairly active. My doctor said that I wasn't damaging my organs.

He did not order the transfusions when my counts were below a magic number, it was all dependent on my requests when I became symptomatic.

I hope this helps.

[launch]

Amy,
They also monitor the Hemacrits along with the Hemoglobin to determine when to transfuse.

[Bill F]

Hi Amy,

Some time back, people were routinely transfused with packed red blood cells (prbcs) when their hgb dropped to 10. These days, as noted above, it's usually done when the patient experiences symptoms to a degree that they feel is uncomfortable. Some patients can go very low before significant discomfort is realized. With my hematologist, I would be the one to ask for a transfusion - after noting an increase in breathing rate following some simple task (like walking up the driveway). For me this usually occurred when I got below about 8.5 or so.

Regarding organ damage - one article I found indicates the necessity to drop to an hgb range of from 3 - 5 before any organ damage may occur. So you needn't be too concerned about that at this point. I was going to provide the link that noted this range, but at the moment I can't find it.

I don't remember procrit or ananesp affecting my counts much. Revlimid did lower my hgb so that more frequent transfusions were required. Other than that, none of the drugs gave me bad side effects.

Four cycles of dacogen worked great for me in that after 87 prbc transfusions, my hemoglobin stabilized around 10, so that I'm currently transfusion-free (for almost two years).

Best of luck in this struggle.

[amykdb]

Thanks so much to everyone for posting replies. It's good to know that the low hgb is not damaging her organs at this point.

Good news on the doctor front... My mom has (FINALLY) agreed to see another doctor. I contacted the MDS Foundation and they are working to get her in to se an MDS Specialist at University of Chicago. They have been wonderful and are really pushing this through quickly. I'm hoping that we'll get in sometime next week so that they can determine her next treatment. I don't trust that the local guy will choose the most appropriate next step. She has not responded at all to the aranesp after two cycles--actually her counts are much lower than when she started.

Again thanks to everyone. My thoughts are with all of you.

Best,
Amy

[Birgitta-A]

Hi Amy,
Good that your mother will see a specialist in MDS!

You know if her Serum EPO was high initially she probably won't respond to Aranesp. Our kidneys make EPO and when the HGB is low the kidneys increase our own Serum EPO.

If our own Serum EPO is more than 500 initially Aranesp (EPO) hardly ever has any effect. You should ask her doctor about the value of her Serum EPO before she was treated with Aranesp. My Serum EPO was more than 800 initially and I didn't get Aranesp because I would probably not respond.

Here is an abstract about Aranesp (erythropoietin) and response:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent (90 units of red blood cells), Desferal and Ferriprox (not approved in the US) for iron overload, Neupogen 2 injections/week for low white blood cells, asymptomatic

[Vera W]

All I can say is YEAH!!!! Perseverance does pay..Keep looking for the best treatments!

[Mike M]

There is a good book that you may want to get to better understand some basics about MDS. Its title is "100 Questions & Answers about Myelodyspalastic Syndromes" by Jason Gotlib and Lenn Fechter. This was helpful to us in getting some basic understanding of a whole range of MDS topics. With respect to life span stats, they are just that statistics. In my case they indicate that I should expect 3 to 6 years, but many who I have talked with have lived with MDS for 12 to 18 years. I have dicided to ignore these numbers and go with how I feel and what the CBC and BMB results tell me. Mike

[amykdb]

Hi Everyone-

Thought I'd give an update on the recent news...

I contacted the MDS Foundation and worked with Audrey, the U.S. patient liason. What a great lady! She was able to contact Univerisity of Chicago to get a quick appointment with an MDS Specialist scheduled for my mom. We met with Dr. Godley at the University of Chicago and it confirmed all of my concerns about what has been done to treat my mom to date. Her local hemotologist never ran the last test that was needed to confirm if it was MDS or AA. So, they performed that test and I should know for sure tomorrow. Of course, it is most likely to be MDS based on her labs, BMB, and most of all, her cytogenetic abnormalities, but still, you think he would have run the test! As Brigitta mentioned in an earlier post, aranesp was indeed the wrong treatment. When we got to the University, her Hgb was at 6.8. The doctor told my mother that anytime hgb drops below 8 that it puts stress on her organs, and that she needs to transfuse whenever she drops to 8.

So, here is the plan as of today:
Tomorrow, she will get 2 bags (her first transfusion). They noticed 3% blasts in her peripheral smear, so it's back to U of C for a BMB. If all is as expected and she hasn't progressed to AML, she will start on vidaza. The hope is that with vidaza and transfusions that she will get to a state where she can get a BMT. I will be HLA-typed this week, as will my uncle. The new (and improved ) hematologist would like to do the BMT in about 8 weeks. As scary as a BMT will be, I have hope that it will give her more time with us. She just celebrated her 65th birthday on Friday and she's not ready to go anywhere yet. I'll keep post again soon when I know more.

All of you are in my thoughts and prayers. None of this is easy, but knowing that others understand is a godsend.

Take care,
Amy
_________________________________________________________________
Daughter of Judy, 65 yo, MDS Int-2, multiple chromosome abnormalities, 3% blasts, >5% cellularity

[Vera W]

I am so relieved with this good news. At least I know she is being taken care of!! Like I said before Vidaza saved my life!!

[Dick S]

amykdb, have you checked to make sure they will give your mom a BMT? I couldn't get one because of my age. 65 years old used to be, as I said "used to be", the cutoff age for a BMT. I don't know what it is today, I know there was some talk about raising the age limit. I sure hope she can get one, but would be curious to know if she can. Good luck and prayers your way.

[Vera W]

My friend's brother had a mini transplant for leukemia at age 70 and it was a complete success. He was at the Mayo clinic in Minnesota.

[amykdb]

The doctors at University of Chicago said that they commonly perform BMTs on people in their 60s and have very good success rates. The oldest person that they performed a BMT on was 75 years-old. They have really changed the age cut-off in recent years. As long as a person is in good health, other than MDS, AA, etc., they are considered a candidate for a BMT. Keep in mind that the doctor we saw at University of Michigan said that she wasn't a candiate due to her age, and the local hematologist said, "I wouldn't do it if I were her." But with that said, hospitals that have more experience and are more up-to-date on research will be more likely to say that it is a viable option.

Amy

[launch]

Amy,
When Ron was going to the local doctor's office, he even said the BMT age is 65yrs he thought, but, referred us to Emory at our request. Once we met with the team at Emory, they said they don't really put an "Age Limit" on BMT, but, they look at the patient's health to determine best course of action. They mention, in the future, if necessary, they would consider a mini-BMT which is with not so harsh chemo... easier on the system, etc. They still plan to do testing for sibling matches for BMT to have on record.

But, as you see the posts on Ron's progression under the "Clinical Trial" e1905, you'll see just how well he's responding to Vidaza! It's a wonder drug! For Ron, he received, as part of the clinical trial, lower doses for 10-Days.... the post from yesterday showed his blood levels were in the normal ranges practically now. I suspect they'll do a BMB earlier than 6 months to check his progress... blasts, etc.

Like you, I am so glad my husband got a second opinion at a medical center that specializes in this type sydrome.... without the care he's currently receiving, I don't know where we'd be right now... he was dx Feb 18,2009 and it seemed our world turned upside down... he was really pale, was so energy drained, etc.... Now, just a few months later, it's like he's new man. We keep "pinching ourselves"....

I continue to pray for all MDS patients & caregivers....
Hugs, Cindy

[amykdb]

Well, my mom is going in next week for chemotherapy. Her marrow showed an inordinate amount of myelofibrosis. The plan is for her to go into the hospital for one month of chemo. She does not have AML because her blasts aren't high enough, but they are treating it as though it is because her MDS is so aggressive. I'm scared for her and for me. The thought of her not being around is now really getting me. I'm hopeful that this will all work out but it's a lot to handle. After the chemo., she'll be sent home to recover for two weeks and then come back in for more chemo and a BMT if they can find a donor. My Uncle and I were both tested this week. No results yet.

I'll post another update soon.

My thoughts are prayers are with all of you. And of course, Vera, you are very much in my thoughts. I hope all is going well for you. Knowing you, you'll read this. So, Hi!!

[Vera W]

You are right! I am glad that mom has a viable option now!!
I have about 12 bags of super heavy duty chemo and all of my blood counts improved! What is up with that? I am supposed to be killing my immune system!

[Birgitta-A]

Hi Vera,
It must really be very uncommen to get improved counts during induction therapy - what do your doctors tell you about that?
Kind regards
Birgitta-A

[Vera W]

This is what I have,6-25 Wbc 6.9, Anc 3.93, Hct 35.8,Plts 294, Creat 0.9, bun8.
6-26 6.3 5.10 Hct 37 324 0.88 9.
Go figure. I am waiting to see todays. My doctor is no where to be found. I talked to the alternate and he said it was an anomaly,