What can I expect?

[Mblackmon]

This is my first time posting to any site for any type of support. I was diagnosed with MDS 1 year ago this week. My red blood count, white blood count, platelets, and hemoglobin counts are all low. The last test results showed a hemoglobin count of 7.6.

I have refused blood transfusion because, to me, it is the beginning of the end. I am not ready to face that at this time. I continue to work and besides feeling tired all the time, I keep on.

I am just now beginning to look around at what is available for me. I receive an aranesp shot every three weeks. The platelet counts are in the low 60's.

[Neil Cuadra]

Mblackmon,

Welcome to the forums.

An MDS diagnosis is a serious matter, but you are apparently among the people who are able to live with the disease, meaning that your counts have been low but you've been able to tolerate them at that level for a year.

Aranesp is one way to boost your hemoglobin, as would whole blood transfusions. They each have their downsides as long-term treatments, since aranesp can produce a number of side effects, and transfusions can lead to a buildup of excess iron. But either could give you what you need to keep on keeping on.

What made you decide to seek more support? Has your condition changed, or are you just trying to gather information about treatment choices?

Do you have a good hematologist who you can work with? Do you have family and friends who to support you too?

[Mblackmon]

Yes I have a great doctor who treats me as a person and not a number. I also have family and friends who are very concerned for my well-being. I have never really worried about my future until the last few injections. The nurse and the doctor are very persistent in starting the blood transfusions. Like I said, I am very adamant in my refusal because of the resent death of a member of my church who had MDS. He started a series of blood transfusions which ended 138 transfusions later. His quality of life suffered and that's what I am fearful of. I can still function, all be it slower than I used to, but I can still go. Just trying to weigh the odds. Yes I have a prayer group that prays for me daily. I don't really worry about myself as much as I worry for those around me; wife, daughter, grandkids. You know what I mean. Just trying top get a feel of how others are dealing with the decision to trans or not to trans. Thank you for the reply, Mike

[MarianneS]

I am speaking from my husband's experience. When diagnosed MDS high risk he started Vidaza along with blood transfusions. All his counts were in the cellar (2013). He thankfully has done well by going along this path. Do not sell yourself short. Where there is life there is hope.

[bailie]

Has your doctor suggested a stem cell transplant? It is the only possible cure. My situation was that I started immediately in the direction of the transplant as soon as I was diagnosed and before having any transfusions. I had eight cycles of Vidaza to get me into remission and get my blood counts up. I felt good the whole time until transplant which was nine months after diagnosis. I would have died about seven months after diagnosis without the Vidaza and transplant. If a transplant is in your future I would encourage you to have it as soon as possible while you are feeling fairly well. What is your age? This is an age related disease. I have only had one transfusion since I was diagnosed and that was about five days after my stem cell transplant. This forum is excellent to help you educate yourself about MDS. The education (I feel) is extremely important. We wish you a very good outcome.

[Mblackmon]

I am 67 years old. My doc said I would not be a candidate for a transplant. The only treatment so far has been the injections. Chemo has been mentioned as an option later on.

[bailie]

This is important, do you have other health problems that are limiting your options? Your age should not be a problem for transplant.

[Greg H]

Welcome!

This is a great place to learn from the experience of other patients.

It's good that you are thinking about transfusions now, before you are faced with falling counts that make transfusion truly necessary. My introduction to bone marrow failure came when a routine visit to my family doc pegged my HGB at 6.2. He was amazed that I was still walking around. He immediately sent me for two units of packed red blood cells. Over six years, I have had more than 100 units. And I've never felt they have impacted my quality of life — other than to relieve fatigue and keep me alive.

Coincidentally, my HGB was 7.6 today. I can function at that level. Get me in the 6s and it gets pretty rough. I see transfusion as just a fact of life for folks with bone marrow failure.

Any idea why transfusions were seen as negatively affecting your friend's quality of life?

Best of luck to you!

Greg

[PaulS]

Hi - I'm sorry you are struggling with MDS - but do not despair - there is hope.

I wasa diagnosed about four years ago - The first year or two there was no need for treatment, but my Hgb slowly declined. At around Hgb of 10 I noticed it was getting difficult walking up hill. We tried Aranesp but that didn't seem to work. Next we tried Vidaza - a frontline drug for fighting MDS that works for maybe 40-50% of the time - for a period of time. That didn't for me either - but I would think you would try that next. My Hgb and platelets were both falling - Hgb got down the 7's and eventually to 5 something. At that level I felt terrible, had very little energy, had trouble just walking. I became dependent on blood transfusions and became a "professional patient," At that point blasts in my marrow started rising and we decided upon a transplant - Going into the transplant they discovered I had serious coronary artery disease - and serious pulmonary hypertension - associated with a build up of fluids from so many transfusions. I needed a stent for the coronary artery disease - the pulmonary hypertension cleared up after I stopped needed transfusions. I'm nearly eight months post transplant now - I've been skiing, can charge uphills and generally feel great - I'm looking forward to my son's graduation next week.

It's great that you're doctor is caring and you respect each other - but you might want to also consult with an expert in MDS and a transplant specialist. As Bailie mentioned - your age should not preclude you from a transplant alone - and even serious co-morbidities such as heart disease can be accommodated. It can be hard to think clearly with Hgh around 7 - so transfusions may be called for so you have the energy to process information and get to the right doctors - I hated the idea of transfusions, but they did help me function. If you are a candidate for a transplant you don't want to wait too long - and the fewer transfusions you have the better. Why did you doctor say you were not a transplant candidate?

Here is a link to a list of MDS centers of excellence. http://www.mds-foundation.org/mds-ce...of-excellence/ I don't see one in Alabama - are you able to travel? There are some excellent centers for both MDS and transplant in Florida and Georgia - and there are also great places New York, Maryland Texas etc. Maybe you local hematologist knows someone - maybe you have family or friends near a center - I see they do transplants in Birmingham but I haven't heard anything about them - and if you can travel I'd try and get to a center with lots of experience with both MDS and transplants - especially challenging ones. A transplant can be difficult, but holds out hope for a cure.

If you are going to start a drug like Vidaza, you also wouldn't want to wait until your counts get too low, as that drug often lowers counts, especially platelets, before it helps. Factors influencing your treatment include the type of MDS you have, the percentage of blasts in your marrow - and mutations you may have. A local hematologist will not necessarily have experience with many MDS patients and may not be aware of clinical trials that may be worthwhile, nor be aware of advances in stem cell transplant.

I needed a lot of support, faith and prayer - as well as some great doctors - to get through this far. Try and stay positive and focussed on finding the best treatment plan for you.

Good luck and best wishes,
Paul

[Mblackmon]

I had a stint placed in the back side of my heart some 5 years ago. I have had several check ups since without any problems. My doctor said I would not survive the transplant. I will have to ask him why next week. I am able to travel and Bham is only 1 1/2 hours away. I consider myself in good physical condition other than this MDS thing. It was found during a routine physical a year ago. I was complaining of fatigue way before that.

I have thought about a second opinion but the process takes time.

There was a question asked about my friend who died from MDS and his problems with the transfusions. He never really got to feeling any stronger and after several transfusions, his veins began to collapse. They eventually installed a port. His wife strongly suggested I have a port installed early. What are the thoughts on that? I do not know how to read all the info on the report I receive each after each shot. Is there an app that will help me to understand the results? Thank you again, Mike

[bailie]

Have you had a bone marrow biopsy recently? Is your doctor an oncologist/hematologist? How much experience has he had with MDS?

[PaulS]

Hi Mike - What numbers are you talking about post shot? Blood counts? Bailie's question about bone marrow biopsy is very important - have you had one recently? The % of blasts and cytogenetics are very important and will influence treatment options and decisions. Have you discussed trying Vidaza (Azacitdine) or Dacogen (decictabine)?

If you have a transplant the pre-transplant treatments (conditioning) can vary considerably depending upon your disease progression, other health issues (co-morbidities) and the experience of the transplant team. If blasts are high they might use a drug like Vidaza or a stronger chemo agent to bring the blasts down prior to transplant. Depending on age and health they might use strong chemotherapy, sometimes with radiation to try and kill all of the marrow and immune system (myeloablative) - or in older patients or those with other health issues they'd use a non-myleoablative conditioning regime (sometimes called mini transplant) - this is what they did with me due to my coronary issues. The non-myleoablative transplant relies a little on the transplanted immune system to kill off any remaining cancer cells (Graft versus Leukemia). There his a higher risk of relapse in a non-myeloablative transplant, but a lower risk of the transplant itself killing the patient. An experienced transplant specialist at a busy transplant center would be the doctor to discuss these issues with. A hematologist/oncologist would generally defer to the transplant specialist in regard to eligibility, risk, type and appropriateness of transplant. Different transplant centers/doctors may have different opinions - A smaller transplant center may shy away from a riskier transplant/patient while a bigger more experienced one may not. Before any transplant they'd do a thorough examination to make sure you're healthy enough for the procedure. Chronic anemia and frequent transfusions can both be bad for the heart.

I did not have a port when I was getting weekly transfusions - and did not like having a central line during and after my transplant - although if you are getting drugs or medicine frequently they are convenient. You have to be careful about keeping the area clean.

Paul

[bailie]

Excellent comments Paul. One additional comment for someone who hasn't been through this is, there is no pain involved in the procedure. I slept through mine. There is just the tired/exhausted feeling that carries with a person for a few weeks/months. Also, I think almost everyone (and families) consider the transplant the right decision even if it doesn't work out well.

[riccd2001]

Transfusions of prbc's was my choice of treatment for my low-risk MDS. Where I live transplants are not done after 65 years of age. See my signature for my choice of treatment.

Now at AML, I'm still here!

[Mblackmon]

I have to go next week for another aranesp shot. I feel confident they are going to ask me to do a transfusion. What questions should I ask and what numbers do I need to look at? I get a print out every time I get the shot. I want to thank everyone that has responded to my jabbering.

[Greg H]

If we're talking red blood cell transfusions, most centers seem to transfuse either when hemoglobin drops below 8 or when it drops below 7. Some centers transfuse at a higher level for older patients or for other health conditions.

I haven't had many platelet transfusions, but my doc will transfuse platelets when they drop below 10 in a normal situation, but will transfuse at 20,000 if you're fighting a fever or some other health condition. I just had a spinal tap and received enough platelets to get me from 27,000 to 53,000 in order to have the procedure.

There is some resistance to transfusing platelets too often, because the often lose their effectiveness after while. This is less of a problem with red blood cell transfusion, though you can develop antibodies that react to specific antigens on the surface of red blood cells over time. I have three antibodies, which means it takes a little extra time to find red blood cells that will work for me.

Take care!

Greg

[PaulS]

Hi - As far as transfusions go you mainly want to consider how you feel and how low your blood counts are - If you're hemoglobin is lower than 8 you probably feel pretty bad and a transfusion may make you feel better - depends on how well the Aranesp is working. Look at your WBC, Platelets and hemoglobin - and look at the trend - are one or more lines going down or are they stable? If you get a transfusion you'll want to see how it works - how long it lasts. Once or moth or so is a different situation than every week.

You may also want to discuss a broader treatment plan - for that you should know what your bone marrow looks like - what is the percentage of blasts? Are there cytogenetic abnormalities - and if so - what is the significance - do they put you at a higher risk, or do they suggest a drug such as Revlimid might be appropriate. When was your last BMB - and when will you have another - if you haven't had one for a while and your counts are trending down a BMB would be important.

If your counts are trending down,you might also ask if the DR. is considering a drug such as Vidaza? Why? Why not?

Last - ask why did the doctor think you wouldn't survive a transplant? What about a non-myloablative transplant? Does he know anyone whom he'd recommend for a consult? In my experience the best doctors freely consult with their peers, especially in difficult cases. They also are helpful in making referrals for transplant consult or second opinions.

Is your doctor a hematologist/oncologist?

If you have someone to go with you you may want to bring him/her - it can sometimes be difficult to process information. Also, don't hesitate to ask follow up questions if your doctor uses jargon or language you don't understand - don't be shy or afraid to ask him to explain. Sounds like you have a good relationship - so you should make sure you understand what he's talking about. Why? Is always a good question - as is "what does that mean?"

Good luck
Paul

[Mblackmon]

I will go home and see what those counts are. I know for sure the platelets are in the low 60's. the Hgb is 7.6. White and red counts are down also. Other than being tired all the time and shortness of breath, I am functioning OK.
I am supposed to get another injection this coming Thursday and also have a consultation with my doc. I will post those results. Thanks again, Mike

[maggiemag]

Hello, MBlackmon; I'm sorry you had to join our club! Paul has listed some very good questions for you to ask your doctor; you might consider printing out his post to take with you to your appointment.
Additionally, besides the inconvenience of having transfusions and stuff, severe anemia can cause heart attacks. Hemoglobin carries oxygen to the cells and if it is too low, the heart muscle doesn't get enough oxygen to function correctly, which can cause chest pain and serious heart attacks, with the heart muscle permanently damaged. As the heart has to work harder to make up for the lack of enough oxygen, you go into heart failure, with symptoms of shortness of breath, swelling in ankles, enlarged liver, etc., etc. The heart keeps enlarging to compensate. As it progresses, it becomes harder to treat. These are all reasons why the physicians want to keep your Hb up closer to normal limits.
I just wanted to briefly explain what happens, hope I didn't overstep boundaries!
Mags

[riccd2001]

Some simple advice from a long-ttime patient who has had over 365 prbc transfusions.
Keep a record of the so-called units or bags. None are the same. They have different volumes ( ml), donation and expire dates. Keeping an eye on trends you may find certain things affect you differently.

And of most importance, ask your doc if pre-meds will be essential for you to receive only compatable blood (that's all about antibodies that you may develop or already have).
When you reach about 20 units, you will need to discuss iron-removal choices.
Good luck, and all the best with your decisions.

[kyis]

I can't agree with everyone more.
I put off transfusions for quite a while and can feel it right away when I drop into the 7's. I've only had 3 so far. Wanted them so I wouldn't stress my heart out anymore. Low hgb can also make your body receptacle to other problems, infections etc. so best keep your strength up.
Blast count is very important. I watched my go up for 8 years, thought it was kind of holding steady at 8-10% then it jumped to 14% so I jumped on Vidaza to get me ready for transplant.
I've watched my ferriten and Erythropoietin rise. Your Erythropoietin can compensate for a while to generate more red stuff. Mine was 62 In 2012 and was 2262 a in Feb. probably about the time my my hgb started dropping.
Getting transfusions is no big deal for me and is giving me quality of life for sure. There are lots of variables and everyone is pretty different.
If you had a marrow biopsy good know what your celluarity is also.
Get that second opinion and you must have had a bmb. Good Luck. I have to run to my Vidaza shot. On a side note I'm starting to wonder if transfused would be better than abusing my stomach fat. 3 shots every day for 5 days. Running out of real estate there. Good Luck. There are some very knowledgeable people on this site to help and everything I read on this string sounds like good advice.

[Mblackmon]

What numbers do I need to really look at? Going to get a new test this Thursday.

[Mblackmon]

Looking over my last report and I can't find the blast count. What medical jargon
Do I need to look at?

[PaulS]

Hi Mike - Here is a link to a video prevention by Dr. Gale Roboz regarding MDS and treatment options - Its a couple of years old but not too much has changed. It is helpful in understanding MDS and various treatment options.

https://www.pathlms.com/aamdsif/cour...entations/8075

If you prefer to read - here is a link to the AA/MDS foundation website - they have a plethora of information:

http://www.aamds.org/patients/learn-about-your-disease

Will you have someone with you when you see the doctor? There can be a lot of information and it is helpful to have a second set of ears sometimes to process everything.

There are two different types of tests to think about - blood tests - which they draw from your arm - and a bone marrow biopsy (BMB) where they suck out marrow from your hip bone (aspirate). If you are going to a hospital, blood tests should come back fairly quickly - a small doctor's office may send them out - A Bone Marrow Biopsy takes more time to get results back - I'll start with blood tests...

There are many different blood tests - you will probably get a blood test called a Complete Blood Count - or CBC. This test provides information about what is going on with the three major components of your blood - red blood cells - they carry oxygen to other cells - White Blood Cells - they fight disease - and platelets - involved in clotting. Hemoglobin is a molecule in the red blood cells that carries oxygen to other cells - that is generally what Dr's focus on.
The most important numbers to look at are:

Red Blood Cells/Hemoglobin -
Hemoglobin (HgB) - below 8 you're pretty anemic and should probably consider transfusions - You also want to look at any trends - Here are some questions:

Does my HgB go up in response to Aranesp? How much?
Is it trending up, down or is it stable?

If its going up in response to Aranesp that's great - if its stable then maybe a transfusion would boost your counts and last for a while - Ideally you would get transfusions to keep you HgB up around 10 - this could require frequent transfusions or maybe not depending upon your disease - you'd need to see how long your counts stay up after a transfusion. I found its better to have regular smaller transfusions rather than waiting until my HgB dropped very low and I'd need multiple transfusions - the amount of blood I received was the same. You want to avoided getting dangerously low HgB.

When you get a transfusion you are getting red blood cells to boost your hemoglobin.

Platelets
You mentioned your platelets were around 50. Normal platelets should be 140 or higher - at 50 you need to be careful but they'll let you have surgery - below fifty they won't. If platelets are very low you risk excessive bleeding in response to injury - or if low enough even without a specific trauma. If you have very low platelets they can also be transfused, but generally they won't above 10 - and transfusions don't last very long. Drugs used to treat MDS such as Vidaza tend to lower counts before they begin to rise - if your platelets are very low, you may not be able to take such medication - some questions:

Are my platelets trending lower? Stable?
Are you considering a drug such as Vidaza, and if so, should we start sooner than later due to my platelet count?

White Blood Cells

White blood cells fight infection - the number to look at is Absolute Neutrophil Count (ANC) - a component of WBC's - this should be well above 1 - but look at the reference range for both ANC and WBC's and see where you are - are your counts normal? trending down?

Bone Marrow Biopsy (BMB)

A bone marrow biopsy is the definitive way to diagnose MDS - This test can take a week or more for results to come back. Important findings in the BMB include:
% of blasts - blasts are very immature abnormal cells - less than 5% blasts is good - greater than 10% is serious - at that point should probably consider treatments to bring the blasts down - Blasts over 20% is very serious. The BMB will also look at whether there are "dysplastic" cells - misshapen blood cells that characterize MDS. They also should do cytogenetic studies - these can take a while for results - these studies looks for mutations in the chromosomes or genes - Some mutations suggest a more serious disease requiring more aggressive treatment.

You should know
- when was my last BMB? What %blasts were there? Were there any cytogenetic abnormalities? If so, what do they mean in terms of treatment and prognosis?
When are you going to do another BMB?

Here are my questions:
Did you reach out to any transplant/MDS specialists in Birmingham?
Do you have someone to go with you to the doctor?
Is your doctor a hematologist/oncologist?
What report are you looking at?

If it would be helpful to talk on the phone (what a concept) I'd be happy to - just send me a private message (click on my name) and let me know the best way to contact you - it might be easier to talk about things so that you can ask questions as they arise.

All the best,
Paul

[KatailS]

Thank you to Paul for such a thorough and well stated reply..... your post should be very helpful to anyone who is new to this family of diseases. You have pragmatically outlined what anyone who is new to this needs to know, needs to learn, needs to ask.

Every person on this forum has shared experiences that are helping me to learn and understand what I may be dealing with as my own journey unfolds.... and I am very appreciative Thank you ALL!