Hi @twitt1949 This discussion about treatment options for your MDS is one you should be having with your hematologist oncologist. While the bone marrow transplant may no longer be an option for you, there are several medications such Azacitidine (Vidaza), Decitabine (Dacogen) and others which may help to slow the progression or help compensate for lower blood cell counts.
I guess I’m a little surprised your doctor hasn’t mentioned any treatment options. With MDS, often there is one or more blood cell groups that are lower than normal. How are your blood counts? Are your red blood levels low or your platelets?
There are several types of MDS. Knowing the specific type can help determine the appropriate treatment plan. Do you know if your doctor has diagnosied your specific type?
@loribmt
I have 3 doctors. Each have test results and notes from each other. I have all the blood tests results but they are labeled in doctors talk and I don't understand them. Not platelets, iron, red cells etc. I have one doctor at Mich state Univ and he says he agrees with my other 2 docs and he will be here if I need him but basically 3 docs are over kill. The second doc is at the VA in Ann Arbor Mich. Her expertise is MDS and she appears to know her stuff about this disease. She explained with drawings and has been excellent in my opinion. She has me give a blood draw test every 3 months and then after she review them, we have a video talk since we are 3 hrs away. My 3 doc is from I can't say much as I have never met him yet. My original 3rd doc retired 2 months ago and and I have been transferred to this new doc. But I have been doing the same blood tests every 3 months with with the 3rd doc also. She was with Trinity/DeVos cancer center in Grand Rapids Mich.
The VA doc said according to my tests and considering my age (77) I will probably die from old age or something else will kill me (7-8 yrs). But the way I feel at times, its gonna be a long 7-8 yrs. Besides my lack of ambition/energy, my stomach acid makes me feel like crap often.
Do you have a link to the myelodysplastic syndromes group? I can give you my test results if you tell me what tests you want (in doc language)
Thanks so much for your info.
Hi @twitt1949 This discussion about treatment options for your MDS is one you should be having with your hematologist oncologist. While the bone marrow transplant may no longer be an option for you, there are several medications such Azacitidine (Vidaza), Decitabine (Dacogen) and others which may help to slow the progression or help compensate for lower blood cell counts.
I guess I’m a little surprised your doctor hasn’t mentioned any treatment options. With MDS, often there is one or more blood cell groups that are lower than normal. How are your blood counts? Are your red blood levels low or your platelets?
There are several types of MDS. Knowing the specific type can help determine the appropriate treatment plan. Do you know if your doctor has diagnosied your specific type?
@loribmt
I wasn't aware that there are several different types of MDS. She may have told me but with all the other doctor terms she mentioned I didn't retain it. I just left a message with my doc and she is in a meeting now. She will call me when she is free.
@loribmt
I have 3 doctors. Each have test results and notes from each other. I have all the blood tests results but they are labeled in doctors talk and I don't understand them. Not platelets, iron, red cells etc. I have one doctor at Mich state Univ and he says he agrees with my other 2 docs and he will be here if I need him but basically 3 docs are over kill. The second doc is at the VA in Ann Arbor Mich. Her expertise is MDS and she appears to know her stuff about this disease. She explained with drawings and has been excellent in my opinion. She has me give a blood draw test every 3 months and then after she review them, we have a video talk since we are 3 hrs away. My 3 doc is from I can't say much as I have never met him yet. My original 3rd doc retired 2 months ago and and I have been transferred to this new doc. But I have been doing the same blood tests every 3 months with with the 3rd doc also. She was with Trinity/DeVos cancer center in Grand Rapids Mich.
The VA doc said according to my tests and considering my age (77) I will probably die from old age or something else will kill me (7-8 yrs). But the way I feel at times, its gonna be a long 7-8 yrs. Besides my lack of ambition/energy, my stomach acid makes me feel like crap often.
Do you have a link to the myelodysplastic syndromes group? I can give you my test results if you tell me what tests you want (in doc language)
Thanks so much for your info.
Hi @twitt1949 Your story is much clearer now, so thank you for the additional information. ☺️ From what I was piecing together, it didn’t appear as though you were given much information or any treatment options. But I can see you’re well covered with a great medical team with frequent follow-ups and labs.
As I mentioned previously, there are different types or levels of MDS. From what you’ve just shared, it looks as though you are in a very low risk category with your MDS diagnosis. So that is why there’s no treatment at this time.
There are a bunch of discussions among the MDS members. Here’s a quick search with the full results. Feel free to drop into any conversation: https://connect.mayoclinic.org/search/
Let me know if I can help further, ok?
I had the reverse problem with HU, no consitipation, I had to use BRAT diet to firm up (Bananas Rice Applesauce Toast). I had infrequent reflux issues, this was on 2 caps once a day. I think everyone reacts differently to same medications.
Hi @twitt1949 This discussion about treatment options for your MDS is one you should be having with your hematologist oncologist. While the bone marrow transplant may no longer be an option for you, there are several medications such Azacitidine (Vidaza), Decitabine (Dacogen) and others which may help to slow the progression or help compensate for lower blood cell counts.
I guess I’m a little surprised your doctor hasn’t mentioned any treatment options. With MDS, often there is one or more blood cell groups that are lower than normal. How are your blood counts? Are your red blood levels low or your platelets?
There are several types of MDS. Knowing the specific type can help determine the appropriate treatment plan. Do you know if your doctor has diagnosied your specific type?
Two things I do remember by doc saying is it is pre cancerious and very low risk, but can turn into cancer at any time, thats why they are doing the 3 month blood tests.
Also in 3 weeks I go in for a PET scan. What is it and what does it tell? Any one else have a PET scan?
Two things I do remember by doc saying is it is pre cancerious and very low risk, but can turn into cancer at any time, thats why they are doing the 3 month blood tests.
Also in 3 weeks I go in for a PET scan. What is it and what does it tell? Any one else have a PET scan?
@twitt1949
A PET Scan is useful for Detecting cancer in the body. Since you’ve not had one before this first one will be a good reference point going forward.
A little information about what a PET scan is and how it’s done.
~PET (Positron Emission Tomography) Scan https://www.healthline.com/health/pet-scan
There are several discussions from other members who have had the scan either to help diagnose a disease or for checking progress in treatment or looking for recurrences. There are also other applications for the PET scan.
Here’s one of the discussions for you. More can be found by typing in PET Scan in the upper search bar.
@twitt1949
A PET Scan is useful for Detecting cancer in the body. Since you’ve not had one before this first one will be a good reference point going forward.
A little information about what a PET scan is and how it’s done.
~PET (Positron Emission Tomography) Scan https://www.healthline.com/health/pet-scan
There are several discussions from other members who have had the scan either to help diagnose a disease or for checking progress in treatment or looking for recurrences. There are also other applications for the PET scan.
Here’s one of the discussions for you. More can be found by typing in PET Scan in the upper search bar.
Hi Again
My doctor just called me back. I asked about other forms of MDS and she said this (along with much other stuff but hopefully this will tell you something. mds sf3b1 runx1 muyion
Hi Again
My doctor just called me back. I asked about other forms of MDS and she said this (along with much other stuff but hopefully this will tell you something. mds sf3b1 runx1 muyion
Yes, I've been vey impress with my Doctor. I call this morning and left a message and she call me after hrs and she and I talked for at least a 1/2 hr. She explained stuff way above my head, She even got into my pet scan coming up in 2 weeks and what it will be looking for. She said she will examine the results and contact me for the results. She has excellent bed side manners. I love that girl!! By the way, my wife feels the same way about her.
Yes, I've been vey impress with my Doctor. I call this morning and left a message and she call me after hrs and she and I talked for at least a 1/2 hr. She explained stuff way above my head, She even got into my pet scan coming up in 2 weeks and what it will be looking for. She said she will examine the results and contact me for the results. She has excellent bed side manners. I love that girl!! By the way, my wife feels the same way about her.
@twitt1949 I’m so happy for you to have that relationship and level of care with your doctor. It’s so rare to have a doctor of that caliber these days. She’s a keeper for sure! My husband and I feel the same about my transplant doctor/hematologist at Mayo. He goes above and beyond…more like a colleague than dr/patient.
Wishing you continued good health…let me know what you find out with the PET scan. ☺️
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@loribmt
I have 3 doctors. Each have test results and notes from each other. I have all the blood tests results but they are labeled in doctors talk and I don't understand them. Not platelets, iron, red cells etc. I have one doctor at Mich state Univ and he says he agrees with my other 2 docs and he will be here if I need him but basically 3 docs are over kill. The second doc is at the VA in Ann Arbor Mich. Her expertise is MDS and she appears to know her stuff about this disease. She explained with drawings and has been excellent in my opinion. She has me give a blood draw test every 3 months and then after she review them, we have a video talk since we are 3 hrs away. My 3 doc is from I can't say much as I have never met him yet. My original 3rd doc retired 2 months ago and and I have been transferred to this new doc. But I have been doing the same blood tests every 3 months with with the 3rd doc also. She was with Trinity/DeVos cancer center in Grand Rapids Mich.
The VA doc said according to my tests and considering my age (77) I will probably die from old age or something else will kill me (7-8 yrs). But the way I feel at times, its gonna be a long 7-8 yrs. Besides my lack of ambition/energy, my stomach acid makes me feel like crap often.
Do you have a link to the myelodysplastic syndromes group? I can give you my test results if you tell me what tests you want (in doc language)
Thanks so much for your info.
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Helpful -
Hug
3 Reactions@loribmt
I wasn't aware that there are several different types of MDS. She may have told me but with all the other doctor terms she mentioned I didn't retain it. I just left a message with my doc and she is in a meeting now. She will call me when she is free.
Hi @twitt1949 Your story is much clearer now, so thank you for the additional information. ☺️ From what I was piecing together, it didn’t appear as though you were given much information or any treatment options. But I can see you’re well covered with a great medical team with frequent follow-ups and labs.
As I mentioned previously, there are different types or levels of MDS. From what you’ve just shared, it looks as though you are in a very low risk category with your MDS diagnosis. So that is why there’s no treatment at this time.
There are a bunch of discussions among the MDS members. Here’s a quick search with the full results. Feel free to drop into any conversation:
https://connect.mayoclinic.org/search/
Let me know if I can help further, ok?
-
Like -
Helpful -
Hug
1 ReactionI had the reverse problem with HU, no consitipation, I had to use BRAT diet to firm up (Bananas Rice Applesauce Toast). I had infrequent reflux issues, this was on 2 caps once a day. I think everyone reacts differently to same medications.
-
Like -
Helpful -
Hug
2 Reactions@loribmt
Two things I do remember by doc saying is it is pre cancerious and very low risk, but can turn into cancer at any time, thats why they are doing the 3 month blood tests.
Also in 3 weeks I go in for a PET scan. What is it and what does it tell? Any one else have a PET scan?
-
Like -
Helpful -
Hug
1 Reaction@twitt1949
A PET Scan is useful for Detecting cancer in the body. Since you’ve not had one before this first one will be a good reference point going forward.
A little information about what a PET scan is and how it’s done.
~PET (Positron Emission Tomography) Scan
https://www.healthline.com/health/pet-scan
There are several discussions from other members who have had the scan either to help diagnose a disease or for checking progress in treatment or looking for recurrences. There are also other applications for the PET scan.
Here’s one of the discussions for you. More can be found by typing in PET Scan in the upper search bar.
~What are PET scans like?
https://connect.mayoclinic.org/discussion/what-are-pet-scans-like/
Let me know what you find out, ok?
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Like -
Helpful -
Hug
1 Reaction@loribmt
Hi Again
My doctor just called me back. I asked about other forms of MDS and she said this (along with much other stuff but hopefully this will tell you something. mds sf3b1 runx1 muyion
-
Like -
Helpful -
Hug
1 ReactionHi @twitt1949 This is way above my “pay grade”. ☺️ The important thing is that you have a doctor who is attentive and is taking good care of you!
I hope you’ll continue to join in the discussions in the group. Sharing experiences is what makes Connect so special.
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1 Reaction@loribmt
Yes, I've been vey impress with my Doctor. I call this morning and left a message and she call me after hrs and she and I talked for at least a 1/2 hr. She explained stuff way above my head, She even got into my pet scan coming up in 2 weeks and what it will be looking for. She said she will examine the results and contact me for the results. She has excellent bed side manners. I love that girl!! By the way, my wife feels the same way about her.
-
Like -
Helpful -
Hug
4 Reactions@twitt1949 I’m so happy for you to have that relationship and level of care with your doctor. It’s so rare to have a doctor of that caliber these days. She’s a keeper for sure! My husband and I feel the same about my transplant doctor/hematologist at Mayo. He goes above and beyond…more like a colleague than dr/patient.
Wishing you continued good health…let me know what you find out with the PET scan. ☺️
-
Like -
Helpful -
Hug
1 Reaction