@loribmt The last few days I have been sleepy tired. I have been taking 3 hour naps. Prior to that I felt ok and my appetite has been better. I go Wednesday for labs to see how my hemoglobin is doing
@lindak123 Was feeling exhausted most of the time in December. No energy to do much of anything. Much to my surprise my hemoglobin was a little higher than it had been for the past few years. Have CMML and watch and wait for 2 yrs now.
Hi Linda, There are several types of hormone-like substances that stimulate bone marrow to produce blood cells, called hematopoietic growth factors. For instance, patients with MDS, if experiencing a reduction in the output of red blood cells, may be given a drug called Erythropoietin (Epo or Procrit), a growth factor that promotes red blood cell production. This may help avoid red blood cell transfusions in some people. There are other forms of this drug as well.
It’s encouraging for you and your doctor to see your hemoglobin rising. You’re probably feeling a little more energetic too. What was the name of the injection you received?
@loribmt Darbepoetin Alfa. It's supposed to help treat the anemia. After an injection most of my levels are good. But two to three later they start dropping again. I haven't seen my doctor for a few months. I'm wondering if I should find a new doctor. No one is telling me anything.
I have MDs with hg levels between 9.0 & 11. When doing any activity I lose energy quickly, my heart speeds up & I feel air hungry, like not enough oxygen. I have to stop, sit down and recover for a minute. My hemotologist says I shouldn’t feel this with my hug levels sniff it must be something else. I think I just use more oxygen than others. Anybody else have this ?
I have MDS with anemia but I am 77 years old also. I have read that this disease can cause shortness of breath. Do a little research. Make sure you have a good Oncologist
I was diagnosed last April with MDS with anemia. I am taking hormone injections to help my bone marrow start producing healthy red blood cells. I have blood tests every two weeks to see what my hemoglobin is at. If it's below 10.0 than I get the injection. By the fourth week, my numbers start dropping again. How are you being treated? Thanks
I have MDS too. Anemia is being treated with Procreit shots every 2 weeks. Started eating beans & spinach. We'll see if that helps. Cannot reach 12!
Bjw
@barbwsm
Hi. I was diagnosed with MDS with anemia a year ago. My doctor told me that taking iron supplements won't help my anemia. I do eat a lot of veggies along with liver and onions. It hasn't changed anything for me.
@loribmt Darbepoetin Alfa. It's supposed to help treat the anemia. After an injection most of my levels are good. But two to three later they start dropping again. I haven't seen my doctor for a few months. I'm wondering if I should find a new doctor. No one is telling me anything.
Hi @lindak123 Oh that’s frustrating when you feel you’ve been left in the dark by your medical team! Years ago I had that happen and I really feel let down with a loss of faith in them. Sometimes that’s not recoverable.
But I’m not sure if it’s quite time to find another doctor yet. Since you have recently seen a drop in your hemoglobin levels, it must mean you’re on a lab schedule. If that’s the case, it’s not as though they don’t have you on the radar. But you’d certainly like more communication from them as to lab results, what they mean and perhaps followups with an NP or doctor visit on a more regular basis.
It’s possible that there is a parameter for how low your hemoglobin drops before you receive another injection.
If you’ve been comfortable with your doctor to this point, maybe give them a chance by calling the office. Ask to speak with a NP or a callback from the doctor. Let them know you’re concerned because your recent labs showed a decrease in your hemoglobin again. You’re wondering when it will be time for another injection. And then express that you would appreciate regular follow-up conversations with a NP or the doctor so that you’re kept up to speed with your progress, what your options for treatments will be and how frequently can you get the Darbepoetin Alfa injections.
But certainly, if you’re not comfortable with your doctor then a 2nd opinion from another provider can be a good direction. It’s important to feel your doctor and team are attentive and respectful. Does that sound reasonable?
Hi @lindak123 Oh that’s frustrating when you feel you’ve been left in the dark by your medical team! Years ago I had that happen and I really feel let down with a loss of faith in them. Sometimes that’s not recoverable.
But I’m not sure if it’s quite time to find another doctor yet. Since you have recently seen a drop in your hemoglobin levels, it must mean you’re on a lab schedule. If that’s the case, it’s not as though they don’t have you on the radar. But you’d certainly like more communication from them as to lab results, what they mean and perhaps followups with an NP or doctor visit on a more regular basis.
It’s possible that there is a parameter for how low your hemoglobin drops before you receive another injection.
If you’ve been comfortable with your doctor to this point, maybe give them a chance by calling the office. Ask to speak with a NP or a callback from the doctor. Let them know you’re concerned because your recent labs showed a decrease in your hemoglobin again. You’re wondering when it will be time for another injection. And then express that you would appreciate regular follow-up conversations with a NP or the doctor so that you’re kept up to speed with your progress, what your options for treatments will be and how frequently can you get the Darbepoetin Alfa injections.
But certainly, if you’re not comfortable with your doctor then a 2nd opinion from another provider can be a good direction. It’s important to feel your doctor and team are attentive and respectful. Does that sound reasonable?
Yes. I received my latest injection on February 25 due to my hemoglobin dropping to 9.3. Two weeks later, the 11th of March, I had blood work done and my hemoglobin was up to 11.4. This is due to the injection. If my labs start dropping again then I guess it is the shots that is bringing my hemoglobin up but it's not staying up. The doctor I have doesn't like me asking him to repeat his self. He has a heavy accent which is sometimes hard to understand. The last time I asked him to repeat his self he shouted his response. I should have said something at that time but didn't. I talked to my PCP about this and she said I needed a doctor I am comfortable with and if I wanted to change to let her know and she would write a referral. That's where I am at right now. Thanks for taking the time to write back.
Yes. I received my latest injection on February 25 due to my hemoglobin dropping to 9.3. Two weeks later, the 11th of March, I had blood work done and my hemoglobin was up to 11.4. This is due to the injection. If my labs start dropping again then I guess it is the shots that is bringing my hemoglobin up but it's not staying up. The doctor I have doesn't like me asking him to repeat his self. He has a heavy accent which is sometimes hard to understand. The last time I asked him to repeat his self he shouted his response. I should have said something at that time but didn't. I talked to my PCP about this and she said I needed a doctor I am comfortable with and if I wanted to change to let her know and she would write a referral. That's where I am at right now. Thanks for taking the time to write back.
Hi @lindak123, Quite frankly, if that’s the reaction from your doctor, I’d be looking for a new one too! It might be time to take up the offer of your PCP for a referral to another doctor. She’s right, having a doctor with whom you’re comfortable and feel you can trust to have your back, is paramount. So if you have that option it’s worth exploring. Plus it never hurts to have a 2nd opinion.
With your diagnosis of MDS, it is common for one or more of the blood cell groups to be under producing, such as platelets or in your case, red blood cells. So you are correct in that the injections of darbepoetin alfa are helping your body keep up with red cell production. It will most likely be a recurrent treatment for you. But you’d also like to be kept apprised of your condition status and have better communication. That isn’t too much to ask! There are still excellent doctors out there who are patient and compassionate, wanting to educate their patients and give them the best possible care. You deserve nothing less. ☺️
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Hi @lindak123! That’s great news for you! Small victories are priceless. ☺️
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1 Reaction@lindak123 Was feeling exhausted most of the time in December. No energy to do much of anything. Much to my surprise my hemoglobin was a little higher than it had been for the past few years. Have CMML and watch and wait for 2 yrs now.
@loribmt Darbepoetin Alfa. It's supposed to help treat the anemia. After an injection most of my levels are good. But two to three later they start dropping again. I haven't seen my doctor for a few months. I'm wondering if I should find a new doctor. No one is telling me anything.
I have MDS with anemia but I am 77 years old also. I have read that this disease can cause shortness of breath. Do a little research. Make sure you have a good Oncologist
I was diagnosed last April with MDS with anemia. I am taking hormone injections to help my bone marrow start producing healthy red blood cells. I have blood tests every two weeks to see what my hemoglobin is at. If it's below 10.0 than I get the injection. By the fourth week, my numbers start dropping again. How are you being treated? Thanks
@barbwsm
Hi. I was diagnosed with MDS with anemia a year ago. My doctor told me that taking iron supplements won't help my anemia. I do eat a lot of veggies along with liver and onions. It hasn't changed anything for me.
Hi @lindak123 Oh that’s frustrating when you feel you’ve been left in the dark by your medical team! Years ago I had that happen and I really feel let down with a loss of faith in them. Sometimes that’s not recoverable.
But I’m not sure if it’s quite time to find another doctor yet. Since you have recently seen a drop in your hemoglobin levels, it must mean you’re on a lab schedule. If that’s the case, it’s not as though they don’t have you on the radar. But you’d certainly like more communication from them as to lab results, what they mean and perhaps followups with an NP or doctor visit on a more regular basis.
It’s possible that there is a parameter for how low your hemoglobin drops before you receive another injection.
If you’ve been comfortable with your doctor to this point, maybe give them a chance by calling the office. Ask to speak with a NP or a callback from the doctor. Let them know you’re concerned because your recent labs showed a decrease in your hemoglobin again. You’re wondering when it will be time for another injection. And then express that you would appreciate regular follow-up conversations with a NP or the doctor so that you’re kept up to speed with your progress, what your options for treatments will be and how frequently can you get the Darbepoetin Alfa injections.
But certainly, if you’re not comfortable with your doctor then a 2nd opinion from another provider can be a good direction. It’s important to feel your doctor and team are attentive and respectful. Does that sound reasonable?
Yes. I received my latest injection on February 25 due to my hemoglobin dropping to 9.3. Two weeks later, the 11th of March, I had blood work done and my hemoglobin was up to 11.4. This is due to the injection. If my labs start dropping again then I guess it is the shots that is bringing my hemoglobin up but it's not staying up. The doctor I have doesn't like me asking him to repeat his self. He has a heavy accent which is sometimes hard to understand. The last time I asked him to repeat his self he shouted his response. I should have said something at that time but didn't. I talked to my PCP about this and she said I needed a doctor I am comfortable with and if I wanted to change to let her know and she would write a referral. That's where I am at right now. Thanks for taking the time to write back.
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Hi @lindak123, Quite frankly, if that’s the reaction from your doctor, I’d be looking for a new one too! It might be time to take up the offer of your PCP for a referral to another doctor. She’s right, having a doctor with whom you’re comfortable and feel you can trust to have your back, is paramount. So if you have that option it’s worth exploring. Plus it never hurts to have a 2nd opinion.
With your diagnosis of MDS, it is common for one or more of the blood cell groups to be under producing, such as platelets or in your case, red blood cells. So you are correct in that the injections of darbepoetin alfa are helping your body keep up with red cell production. It will most likely be a recurrent treatment for you. But you’d also like to be kept apprised of your condition status and have better communication. That isn’t too much to ask! There are still excellent doctors out there who are patient and compassionate, wanting to educate their patients and give them the best possible care. You deserve nothing less. ☺️