View Full Version : NEWBIE.....so glad to find you!

Fri Feb 1, 2008, 10:56 PM

My 79 yr old Mother has just been diagnosed with MDS. We are totally unfamiliar with this disease and had never heard of it until now. I did get a copy of the biopsy but am not seeing some of the info you all refer to i.e. %of blasts, etc. The report diagnosis says "myelodysplastic syndrome, refractory anemia with ringed sideroblasts."

I began to search the internet for info on this disease. There is much info there but at the same time, not much "hopeful" or positive information. I was so thankful to find you and this forum to know there are LIVING people who have this disease and who are successfully managing it. I will be reading all your previous posts and trying to absorb all I can.

Mother had Large B-cell Lymphoma and was successfully treated with CHOP+R. She then develped sarcoidosis and finished her treatment for that (in remission) early fall. However, her internist has noticed a continual decline in her blood counts so sent her back to her onc. He then did the bone marrow biopsy which shows MDS. After reading some of the info on the net, I feel sure the chemo for the lymphoma has caused this.

The oncologist gave her a shot of Aranesp and she is to have others at two week intervals. That is the only treatment suggested. He indicated he is starting her on a lower dose and if she doesn't respond, will increase the amount. We are praying the lower dose will be effective.

I am wondering if there is anyone else on this list near her age, anyone who has/is being treated only with the Aranesp, how it worked for you, how long does it normally take to know if the shots are going to be effective, etc. Mostly any information/suggestions will be appreciated.

As I said, I am just so thankful to find you! I look forward to hearing from you!

Ruth Cuadra
Sat Feb 2, 2008, 02:12 AM
Hi, Sharon.

We're glad you found us but at the same time we're sorry you have to be here. Your mother certainly sounds like a survivor to have gotten through CHOP for lymphoma in her mid-70s. Unfortunately, it's probably true that she's now developed MDS as a side effect of that chemotherapy. In this circumstance, its called "secondary MDS", not because it's not a primary disease, but because the cause is likely to have been treatment for a prior disease.

In the absence of any severe symptoms (bleeding, infections, extreme weakness or shortness of breath), starting treatment with Aranesp is reasonable. However, I think the recommended dosing is weekly rather than every two weeks until the desired hemoglobin level is reached. You might ask the doctor if he thinks your mother might react adversely to more frequent injections or is being extra cautious about the dosage for some other reason.

You'll read lots of dire predictions about MDS on the Internet, but keep in mind that most statistics out there are old and don't reflect the variety of treatment options, including Aranesp, that have become available more recently. Even at age 79 it is possible to live with MDS for many years with a good quality of life.

Aranesp has been discussed a lot in our forums and you are probably reading a lot of those posts now. I don't have any experience with it myself (my MDS was cured by bone marrow transplant before the advent of Aranesp) but I'm sure others will chime in to share what they can.

Ruth Cuadra

Sat Feb 2, 2008, 07:28 AM
Hi Sharon,
Have you any info about your mothers serum EPO? You know that treatment with Aranesp has a response rate of between 15% and 20% in patients with MDS. The highest rates have been seen in those with low serum EPO levels (less than 500 mU/mL). If the patient is anemic and has never been transfused, the chance of responding to EPO is high. On the other hand, if the patient’s EPO level is higher than 500 mU/mL and two units of blood are required per month, the chance of responding to EPO is about 7%.

Here is a link to info about Aranesp: http://www.cancerbackup.org.uk/Treatments/Supportivetherapies/Erythropoietin

Hope your mother will respond to Aranesp treatment!

Kind regards
68 yo MDS Interm-1 dx May 2006, serum EPO at dx more than 800, RBC transfusion every 6th week, Desferal 4 days after transfusion, Neupogen 2 injections/week

Sat Feb 2, 2008, 11:47 AM
Hello to Ruth and Birgitta,

First, thank you both so much for your replies. I am hoping others will also reply with their experiences.

As for details of Mother's condition, I don't know much. I did get a copy of the biopsy report but as I mentioned, it seems somewhat less detailed than others have described. I also got a copy of her last bloodwork.

She is anemic and has been very weak and fatigued for quite a while. That is what prompted repeat visits to the internist. He at first kept thinking it was her thyroid since she has had a difficult time getting/keeping it regulated in the past. But, after several unsuccessful adjustments and repeated bloodwork, the downward trend of her RBC etc. was noted. The CBC showed the following abnormal values. I haven't had time to look them all up yet but will. I don't see any mention of EPO or anything that I think would represent it on the copy of the results. Is there something here that is what you are referring to? Is that a separate test?

WBC 2.8 (3.5-11)
RBC 2.72 (3.70-5.10)
Hemo 9.4 (11.4-15)
Hema 27.5 (33.0-45)
MCV 101.2 (80-98)
MCH 34.6 (26.0-34.0)
Monocytes 14.9 (0-12)

The doctor indicated he would start her at this lose dose then increase it if she does not respond. He is not one to give explainations so we don't know why he is doing it that way. (She has taken Aranesp before, following the chemo when red counts went down. She has never been transfused.) He also commented her white count was low but did not feel it was low enough to require treatment at this time. (??)

I am still trying to lookup words from the biopsy but don't see reference to EPO levels.

Mother, even at 79, has been very active. She and my Father totally care for themselves and want to be independent even though I live nearby. During all the chemo and worst times, I have done the housework, grocery shopping etc but basically she/they have managed themselves at their insistence. In recent weeks, she has become less able to do the normal things due to tiredness and general weakness. The tired/weak feelings seem to come and go and change in their severity. Is this typical? One day, she feels fairly well, the next awful and even from one hour to the next it can change. Just wondered if this is a normal pattern for MDS.

I really appreciate your responses and please let me know of other things to look up or to ask the Drs about. I have a notebook I started when she began the lymphoma treatment. I keep notes in it so I can remember to ask the Dr various things and then record what he says so I can look it up. I will inquire about the scheduling of the shots. If there are other things I should ask, please do let me know.

Thanks for the link, I will definitely look it up.

Sat Feb 2, 2008, 01:44 PM
Hi Sharon,
Yes, Serum EPO is a separate blood test – perhaps the doctor ordered it before your mother started with Aranesp injections. EPO is made by the kidneys and makes the marrow produce RBC. Good that your mother responded to Aranesp before :).

It is important to follow the WBC count – inform your mother that she should try to avoid infections. When her WBCs are 2.8 her neutrophils - a kind of WBCs - probably are around 1.5, which means a slightly increased risk for infections.

Here is a link for patients with low neutrophils. Look at “How to Reduce Your Risk of Infection” at "Treatment for infections".

I don´t know if the change in tired feelings is a normal pattern in MDS – you will perhaps get a reply from some one else. I have been lucky and not had any other symptoms than shortness of breath.

You are very sensible when you keep your own report – that´s the only way to follow the symptoms and effect of treatment.
Kind regards

larry gard
Fri Feb 8, 2008, 04:21 PM

No doubt you have come across the following websites, but if not I suggest you bring them up:

www.aamds.org - Aplastic Anemia & MDS Int'l Foundation
www.mds-foundation.org This foundation has several helpful booklets that describe MDS and a glossary of terms. If you contact them, they will send the various booklets. Also the foundation lists MDS Centers of Excellence around the USA and the world.
I contacted Azra Raza, MD (a MDS specialist) for alternative treatment. She was at the University of Massaschusetts Medical Center until last August. She now is at The St. Vincent Comprehensive Cancer Center in NY City. Her web site is: www.mdstreatment.org

Best of luck to your mother!

larry gard (P.S. If you have not yet read the "Personal Stories" in the marrowforums website, you may find them of interest. Mine is there with a recap of my second and third opinions at the Cleveland Clinic and UMass Medical center. Other stories are most helpful in getting your "arms' around this interesting and mystyfying MDS disease.

Fri Aug 6, 2010, 01:52 AM
I'm new to this forum. I have been reading some of the posts and I'm glad to have found all of you. My husband, Henry, was diagnosed with secondary MDS 2 weeks ago. It seems he got this from the chemo he was given for his CLL. We are waiting for a call from Stanford for his "evaluation". I'm not to sure what that is all about... I know this, I dont like waiting. :) Any information about secondary MDS would be greatly appreciated. Thank you for your time and all your help.