MDS treatment options other than bone marrow transplant

Posted by garyrp @garyrp, Apr 23, 2018

I have been diagnosed with MDS and bone marrow transplant is not a option. What are some other treatment options?

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@tyson1221

So if your energy returns an your doing better why an how many times to u need to repeat cycle at is benefit to continue to repeat cycles wen med causes lowering of your values

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I know, Howard, it feels like a vicious cycle of chemo vs feeling good again, doesn’t it? I dreaded each month too. But there is a method to this madness.

Maybe this will help explain why cycles are repeated. Chemotherapy destroys any and all rapidly dividing cells indiscriminately as they are replicating. Cancer cells are rapidly dividing all the time. But the vast majority of cells in the body are not all actively dividing at any one time and are left unaffected by chemo.

After your first round of chemo, a large quantity of the cancer cells will have been destroyed. However, some of the remaining cancer cells will be in a resting phase or even a dormant state because they sense a hostile environment. After the chemo clears your body and more favorable conditions return, those resting or dormant cells now emerge and start replicating quickly. So, the second round of chemo destroys this new group of active cancer cells. And that cycle may be repeated until your doctor can confirm a remission.

As a side note: Chemo can also have an affect on normal body cells such as hair, fingernails and mucous membranes because they are also rapidly dividing cells. So that is why people may experience hair loss, sores in the mouth, tummy trouble, etc.

Hopefully this helps.

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Well had fever after first cycle but wasn’t neurtopenic

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Still went to hospital since I wasn’t under 500 they let me go home more transfusions this week

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Just found this forum. Not sure how to participate except to say that I'm in my early 80s, and I have MDS. I give myself a Procrit injection weekly, have blood drawn every 3 weeks. Hemoglobin never above 10, but today just under 8. Hematologist says do nothing but have it tested again next week. Meanwhile, I'm more than a little concerned and not sure at what point I will need a transfusion or other treatment.

I also have high platelet count, and I take hydroxyurea which keeps it around 400.

I appreciate words of support and suggestions for what I need to ask my hematologist.

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@tyson1221

Well had fever after first cycle but wasn’t neurtopenic

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It’s not unusual for the body to react to treatment with a little rise in temperature occasionally. Just keep an eye on your temp daily. Maybe keep a little journal of symptoms and things that you notice with each chemo cycle. Keeping track of events like the fever can be a benefit for future reference for you and your doctor.
Is the fever gone now? Any other changes such as fatigue?

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@bdglass

Just found this forum. Not sure how to participate except to say that I'm in my early 80s, and I have MDS. I give myself a Procrit injection weekly, have blood drawn every 3 weeks. Hemoglobin never above 10, but today just under 8. Hematologist says do nothing but have it tested again next week. Meanwhile, I'm more than a little concerned and not sure at what point I will need a transfusion or other treatment.

I also have high platelet count, and I take hydroxyurea which keeps it around 400.

I appreciate words of support and suggestions for what I need to ask my hematologist.

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Hi @bdglass Welcome to Mayo Connect. You jumped right into the perfect conversation to ‘connect’ with fellow members who have MDS. Thank you for sharing your experience with treatments and concerns for ‘what’s next’…

As long as you’re having frequent blood checks you can place most of that worry with your hematologist to make the decisions for you as far as needed transfusions. If you start feeling weaker than usual, more fatigued, develop a fever, have unusual bleeding or bruising then you may not require any transfusions for blood or platelets. Has your doctor given you any guidelines for when you need to call?

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@loribmt

Hi @bdglass Welcome to Mayo Connect. You jumped right into the perfect conversation to ‘connect’ with fellow members who have MDS. Thank you for sharing your experience with treatments and concerns for ‘what’s next’…

As long as you’re having frequent blood checks you can place most of that worry with your hematologist to make the decisions for you as far as needed transfusions. If you start feeling weaker than usual, more fatigued, develop a fever, have unusual bleeding or bruising then you may not require any transfusions for blood or platelets. Has your doctor given you any guidelines for when you need to call?

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Thank you for your response to my first post. My doctor monitors my blood on a regular basis, thank goodness. I always see my blood test results on my health care system's mychart, so today I contacted my hematologist who had also seen my lower than usual hemoglobin. I'm to have blood work done again early next week so he can determine what, if any, additional treatment I need.

Meanwhile, I'm glad to have found this forum.

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@loribmt

It’s not unusual for the body to react to treatment with a little rise in temperature occasionally. Just keep an eye on your temp daily. Maybe keep a little journal of symptoms and things that you notice with each chemo cycle. Keeping track of events like the fever can be a benefit for future reference for you and your doctor.
Is the fever gone now? Any other changes such as fatigue?

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Thanks for your advice still have 99 to 100 fever an a lot of fatigue hgb is low 6.2 my thinking is this is my body reacting to chemo last week which is suppose to lower my numbers the 2nd week havin another transfusion at end of week need to get my hgb up

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@tyson1221

Thanks for your advice still have 99 to 100 fever an a lot of fatigue hgb is low 6.2 my thinking is this is my body reacting to chemo last week which is suppose to lower my numbers the 2nd week havin another transfusion at end of week need to get my hgb up

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You’re right, Howard. The lowering of blood numbers is a reaction to the chemo usually in that second week. Then your body should start recovering and churning out new blood cells…red, white and platelets. In the meantime, as you mentioned, you might need a transfusion of red blood cells and possibly platelets. After you get the transfusion, you should feel a lot perkier…more red blood cells to carry oxygen through your body.
Keep an eye on the fever though. If it goes above 100.4, especially during this next week when your numbers are low, report it to your doctor.

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@tyson1221

Thanks for your advice still have 99 to 100 fever an a lot of fatigue hgb is low 6.2 my thinking is this is my body reacting to chemo last week which is suppose to lower my numbers the 2nd week havin another transfusion at end of week need to get my hgb up

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My question is since my numbers are so low especially my hemoglobin why isn’t my doc ordering procrit to boost my hgb I mean how many transfusions can I keep getting ahhhh

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