As the article states "Treatment for myelodysplastic syndromes usually focuses on reducing or preventing complications of the disease and its treatments. In certain cases, myelodysplastic syndromes are treated with a bone marrow transplant."
@desertjulie, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to a current MDS conversation taking place.
I would like to introduce you to @wboy1234 who has also been diagnosed with Myelodysplastic syndrome. @wboy, would you mind sharing your treatment option with @desertjulie?
Also, please see the link that Collen supplied above, to information on Mayo Clinic.org.
Can you tell me, when was your husband diagnosed? How have you been coping with this? If you're interested there is a group here for Caregivers that offers support and a listening ear. Follow this link here http://mayocl.in/2h1ttpY
He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?
He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?
Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended Dacogen for good reasons. If Dacogen is helping him maintain his red cell count and platelet count, then that's a good reason to continue. Given your husband's age, a transplant is not going to be recommended, and all other choices are focused on keeping his blood counts up, not on curing the MDS. That's what Dacogen can do.
Vidaza is another drug that is effective for many MDS patients. Like Dacogen, it's what's called "hypomethylating agent." Some patients who don't respond to Dacogen or Vidaza try the other one next, but if your husband's counts are holding on, you may not want to mess with success. His low white count is obviously a concern, so that's worth asking the doctor about directly.
A subset of MDS patients have a particular chromosome abnormality, called "5q minus," for which a drug named Revlimid is especially effective. Presumably, your husband doesn't have 5q minus or the doctor would have recommended Revlimid over Dacogen.
Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended Dacogen for good reasons. If Dacogen is helping him maintain his red cell count and platelet count, then that's a good reason to continue. Given your husband's age, a transplant is not going to be recommended, and all other choices are focused on keeping his blood counts up, not on curing the MDS. That's what Dacogen can do.
Vidaza is another drug that is effective for many MDS patients. Like Dacogen, it's what's called "hypomethylating agent." Some patients who don't respond to Dacogen or Vidaza try the other one next, but if your husband's counts are holding on, you may not want to mess with success. His low white count is obviously a concern, so that's worth asking the doctor about directly.
A subset of MDS patients have a particular chromosome abnormality, called "5q minus," for which a drug named Revlimid is especially effective. Presumably, your husband doesn't have 5q minus or the doctor would have recommended Revlimid over Dacogen.
Do you know what might be recommended when Revlimid for a 5q deletion patient fails? Procrit failed after 1 1/2 years; then Vidaza infusions worked for another 1 1/2 years. Now Revlimid, although keeping Hgb at 11, caused late-onset diarrhea (a known side effect, that late-onset) and was stopped. Waiting for almost a month to get word from the oncologist and hematologist.
What next? Or is there nothing other than transfusions for this patient who has naturally occurring high iron readings that will make transfusions very troublesome?
Hello--my last bone-marrow biopsy was very promising--white cells coming back and no blasts. Now I am wondering if there is such a thing as remission with MDS, and if so, what does it look like?
Hello--my last bone-marrow biopsy was very promising--white cells coming back and no blasts. Now I am wondering if there is such a thing as remission with MDS, and if so, what does it look like?
Hello!
59yr old male had BMT and CHEMO in 11/2021. WB and PLT seesawed for over a year b4 stabilizing. PLT yet to go higher than 148. Still going every 2 weeks for CBC and follow-up. Taking oral meds, though nothing cancer related. Was on PROMACTA pill until 2 months ago to boost PLT. We see where I stand later this week. Feeling....better than in hospital, yet not 100%. Maybe 70-80% Bit of fatigue, memory fog, lack of stamina. Doc said yet to see evidence of C. Hope it continues to trend well....for you too!
Hello!
59yr old male had BMT and CHEMO in 11/2021. WB and PLT seesawed for over a year b4 stabilizing. PLT yet to go higher than 148. Still going every 2 weeks for CBC and follow-up. Taking oral meds, though nothing cancer related. Was on PROMACTA pill until 2 months ago to boost PLT. We see where I stand later this week. Feeling....better than in hospital, yet not 100%. Maybe 70-80% Bit of fatigue, memory fog, lack of stamina. Doc said yet to see evidence of C. Hope it continues to trend well....for you too!
Hello--glad you're doing well. At 83, I'm too old for bone-marrow transplant, so I am on Enasidenib tablets every day and Azacitidine infusions, now every other month. But my white count was discouragingly low yesterday when I went in for a check, and I wonder if that will mean we go back to infusions every month. Mainly hoping to be able to visit my son and daughter-in-law while he is stationed in Germany--and it would be nice to be able to rehabilitate and socialize my little rescue dog. I think fatigue is just built in with this life now.
I will pray for your recovery. I hope your WB counts improve dramatically. I had 2 donor lyphocyte infusions to spur WBC production. Last June mine tumbled to where relapse was questioned. Thank God the counts rebounded after 2 very stressful months. I go for a CBC tomorrow. 2 weeks ago my PLT fell 20 points. Hopefully it goes up. YET to go over 150 as the minimum range level of "normal" Doc seems to thin, "Ahh, good enuf" I just hope that $10, not $200, I pay him is good enough...hehehehe.
Stay strong, positive. Its not a sprint, but a marathon. Each day brings a scenario of its own. Rescue dog is good...I have a black female puggle. Dogs can be a good distraction and comfort. My regards to your son stationed in Germany! I am grateful for his service. Grateful not living in a war zone being bombed or shot at. Grateful for our protectors!\
Please take care!
God bless you!
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Hi @wboy1234, welcome to Connect.
Here is some information about Myelodysplastic syndromes http://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndromes/basics/definition/con-20027168
As the article states "Treatment for myelodysplastic syndromes usually focuses on reducing or preventing complications of the disease and its treatments. In certain cases, myelodysplastic syndromes are treated with a bone marrow transplant."
What treatment has your care team recommended?
My husband is 80 and has been on Dacogen for mylodysplastic syndrom for 17 months, is there a better treatment?
@desertjulie, Welcome to Mayo Clinic Connect. You will see that I moved your discussion to a current MDS conversation taking place.
I would like to introduce you to @wboy1234 who has also been diagnosed with Myelodysplastic syndrome. @wboy, would you mind sharing your treatment option with @desertjulie?
Also, please see the link that Collen supplied above, to information on Mayo Clinic.org.
Can you tell me, when was your husband diagnosed? How have you been coping with this? If you're interested there is a group here for Caregivers that offers support and a listening ear. Follow this link here http://mayocl.in/2h1ttpY
He was diagnosed in June of 2015. He had 42 lood transfusions before the Dacogen started working. His red and platelets have come up but his white is still very low. The Dr. Wants him to continue the chemo with no end in sight. My husbsnd is getting very depressed with the cost and time it takes having 5 days of chemo every 21 days. Is there another treatment available?
Hi @desertjulie. There are other drugs used to treat MDS, but your husband's physician probably recommended Dacogen for good reasons. If Dacogen is helping him maintain his red cell count and platelet count, then that's a good reason to continue. Given your husband's age, a transplant is not going to be recommended, and all other choices are focused on keeping his blood counts up, not on curing the MDS. That's what Dacogen can do.
Vidaza is another drug that is effective for many MDS patients. Like Dacogen, it's what's called "hypomethylating agent." Some patients who don't respond to Dacogen or Vidaza try the other one next, but if your husband's counts are holding on, you may not want to mess with success. His low white count is obviously a concern, so that's worth asking the doctor about directly.
A subset of MDS patients have a particular chromosome abnormality, called "5q minus," for which a drug named Revlimid is especially effective. Presumably, your husband doesn't have 5q minus or the doctor would have recommended Revlimid over Dacogen.
Do you know what might be recommended when Revlimid for a 5q deletion patient fails? Procrit failed after 1 1/2 years; then Vidaza infusions worked for another 1 1/2 years. Now Revlimid, although keeping Hgb at 11, caused late-onset diarrhea (a known side effect, that late-onset) and was stopped. Waiting for almost a month to get word from the oncologist and hematologist.
What next? Or is there nothing other than transfusions for this patient who has naturally occurring high iron readings that will make transfusions very troublesome?
Hello--my last bone-marrow biopsy was very promising--white cells coming back and no blasts. Now I am wondering if there is such a thing as remission with MDS, and if so, what does it look like?
Hello!
59yr old male had BMT and CHEMO in 11/2021. WB and PLT seesawed for over a year b4 stabilizing. PLT yet to go higher than 148. Still going every 2 weeks for CBC and follow-up. Taking oral meds, though nothing cancer related. Was on PROMACTA pill until 2 months ago to boost PLT. We see where I stand later this week. Feeling....better than in hospital, yet not 100%. Maybe 70-80% Bit of fatigue, memory fog, lack of stamina. Doc said yet to see evidence of C. Hope it continues to trend well....for you too!
Hello--glad you're doing well. At 83, I'm too old for bone-marrow transplant, so I am on Enasidenib tablets every day and Azacitidine infusions, now every other month. But my white count was discouragingly low yesterday when I went in for a check, and I wonder if that will mean we go back to infusions every month. Mainly hoping to be able to visit my son and daughter-in-law while he is stationed in Germany--and it would be nice to be able to rehabilitate and socialize my little rescue dog. I think fatigue is just built in with this life now.
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1 ReactionI will pray for your recovery. I hope your WB counts improve dramatically. I had 2 donor lyphocyte infusions to spur WBC production. Last June mine tumbled to where relapse was questioned. Thank God the counts rebounded after 2 very stressful months. I go for a CBC tomorrow. 2 weeks ago my PLT fell 20 points. Hopefully it goes up. YET to go over 150 as the minimum range level of "normal" Doc seems to thin, "Ahh, good enuf" I just hope that $10, not $200, I pay him is good enough...hehehehe.
Stay strong, positive. Its not a sprint, but a marathon. Each day brings a scenario of its own. Rescue dog is good...I have a black female puggle. Dogs can be a good distraction and comfort. My regards to your son stationed in Germany! I am grateful for his service. Grateful not living in a war zone being bombed or shot at. Grateful for our protectors!\
Please take care!
God bless you!