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.
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?
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.
@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?
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.
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.
Yes, I would absolutely be interested in what you say and your group. My doctor says at my age (77), bone marrow transplant is not an option. I would be interested in your meds and I would discuss them with my doctor. Whats next?
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?
Yes, I would absolutely be interested in what you say and your group. My doctor says at my age (77), bone marrow transplant is not an option. I would be interested in your meds and I would discuss them with my doctor. Whats next?
I don't know what HU is but I have myelodysplastic syndromes which is a bone marrow cancer. There is no cure or there are no meds available. Anyways, since I diagnosis I have constipation and I found taking 250mg or 500mg of over the counter magnesium once a day and it has made thing flow a lot better. And I also have stomach acid. For that I found if I mix about 1/4 of a level tea spoon of baking soda with water it makes me feel like a 20 year old in 15 mins. Others said they take tums for acid.
Hi @twitt1949 Just popping into the conversation regarding your diagnosis of myelodyplastic syndromes (MDS). Myelodysplastic syndromes (MDS) are a group of disorders in which a person’s bone marrow does not produce enough functioning blood cells. The abnormal cells can proliferate out of control, crowding out the remaining healthy blood cells.
You’ve mentioned that there is no cure for this condition and no drugs are available. That’s what prompted me to drop into the conversation. At this time a bone marrow transplant is the only potential cure for MDS. If that isn’t an option for you, there are several forms of treatment available for patients with MDS. While they are not cures for MDS, they can help slow the progression of the disease.
We have many members in the forum who have MDS who take these meds.
Have you discussed treatment options with your hematologist oncologist?
I don't know what HU is but I have myelodysplastic syndromes which is a bone marrow cancer. There is no cure or there are no meds available. Anyways, since I diagnosis I have constipation and I found taking 250mg or 500mg of over the counter magnesium once a day and it has made thing flow a lot better. And I also have stomach acid. For that I found if I mix about 1/4 of a level tea spoon of baking soda with water it makes me feel like a 20 year old in 15 mins. Others said they take tums for acid.
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@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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1 Reaction@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 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 ReactionsHi @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 Reaction@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.
-
Like -
Helpful -
Hug
3 ReactionsHi @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.
Here’s a little more information for you regarding MDS (myelodyplastic syndromes)
~This from Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977
~This from American Cancer Society
https://www.cancer.org/cancer/types/myelodysplastic-syndrome/about/what-is-mds.html
~From Healthline.com https://www.healthline.com/health/cancer/mds-hematology
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?
-
Like -
Helpful -
Hug
2 ReactionsYes, I would absolutely be interested in what you say and your group. My doctor says at my age (77), bone marrow transplant is not an option. I would be interested in your meds and I would discuss them with my doctor. Whats next?
-
Like -
Helpful -
Hug
1 ReactionHi @twitt1949 Just popping into the conversation regarding your diagnosis of myelodyplastic syndromes (MDS). Myelodysplastic syndromes (MDS) are a group of disorders in which a person’s bone marrow does not produce enough functioning blood cells. The abnormal cells can proliferate out of control, crowding out the remaining healthy blood cells.
You’ve mentioned that there is no cure for this condition and no drugs are available. That’s what prompted me to drop into the conversation. At this time a bone marrow transplant is the only potential cure for MDS. If that isn’t an option for you, there are several forms of treatment available for patients with MDS. While they are not cures for MDS, they can help slow the progression of the disease.
We have many members in the forum who have MDS who take these meds.
Have you discussed treatment options with your hematologist oncologist?
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Like -
Helpful -
Hug
1 Reaction@twitt1949
"HU" is hydroxyurea, also called hydrea.
Thank you for sharing your helpful suggestions!