@loribmt
Hi Again
I'm sorry for using the word janitor. That was uncalled for and I didn't mean anything by it. Its obvious by talking with you that you are very much involved with MDS and cancers, and it was very calming to talk to you. You mentioned things that might not be mentioned at the doctors office. But I was just curious what made you so intelligent/knowledge about cancer. But just like many forums there is always some one that involved in conversations that come off as an expert and has done or seen it for the last 50 yrs when actually exposed at some point as a Mr. fix it wanna be fraudster.
Anyways keep up what you are doing. It does calm nerves and makes people feel better.
@twitt1949 Your question made me chuckle this morning…Would you believe that I am a 1954 model of AI? (Acting intelligent). 😂 In reality, I’m long retired from a 30+ year career in dentistry.
Now I’m a volunteer mentor in Connect where I can use my life experiences to help offer assistance, reassurance and hope to others facing a life altering diagnosis. Seven years ago, right now, I was in a challenging odyssey for survival with AML, (acute myeloid leukemia). That’s MDS’s aggressive, ugly step sister. Months of intense chemo and a subsequent bone marrow transplant left me fascinated with blood cancers and stem cell transplantation.
At the time I had no inkling about blood cancers or bone marrow transplants or met anyone with whom I could commiserate. It would have felt less isolating if I’d been able to speak with someone who had firsthand knowledge of what I was going through. My medical teams were great, but they could only talk the talk. They hadn’t walked the walk.
Having come out on the other side of both issues, this became my opportunity to be a lifeline, to pay it forward to anyone who could use a mentor. It’s very rewarding to know I’ve been able to help someone through a rough patch.
In a shameless plug, you might be interested in reading a little story Mayo published a couple of years ago about my interaction with someone whom I actually got to meet in person through mentoring them. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I wish you well along your journey. Best wishes for a squeaky clean PET scan!
@loribmt
Hi Again
I'm sorry for using the word janitor. That was uncalled for and I didn't mean anything by it. Its obvious by talking with you that you are very much involved with MDS and cancers, and it was very calming to talk to you. You mentioned things that might not be mentioned at the doctors office. But I was just curious what made you so intelligent/knowledge about cancer. But just like many forums there is always some one that involved in conversations that come off as an expert and has done or seen it for the last 50 yrs when actually exposed at some point as a Mr. fix it wanna be fraudster.
Anyways keep up what you are doing. It does calm nerves and makes people feel better.
@twitt1949 Your question made me chuckle this morning…Would you believe that I am a 1954 model of AI? (Acting intelligent). 😂 In reality, I’m long retired from a 30+ year career in dentistry.
Now I’m a volunteer mentor in Connect where I can use my life experiences to help offer assistance, reassurance and hope to others facing a life altering diagnosis. Seven years ago, right now, I was in a challenging odyssey for survival with AML, (acute myeloid leukemia). That’s MDS’s aggressive, ugly step sister. Months of intense chemo and a subsequent bone marrow transplant left me fascinated with blood cancers and stem cell transplantation.
At the time I had no inkling about blood cancers or bone marrow transplants or met anyone with whom I could commiserate. It would have felt less isolating if I’d been able to speak with someone who had firsthand knowledge of what I was going through. My medical teams were great, but they could only talk the talk. They hadn’t walked the walk.
Having come out on the other side of both issues, this became my opportunity to be a lifeline, to pay it forward to anyone who could use a mentor. It’s very rewarding to know I’ve been able to help someone through a rough patch.
In a shameless plug, you might be interested in reading a little story Mayo published a couple of years ago about my interaction with someone whom I actually got to meet in person through mentoring them. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I wish you well along your journey. Best wishes for a squeaky clean PET scan!
@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. ☺️
I already had the reflux for years so the Family Doctor has me on famotidine 2 pills daily. That helps I have a prescription for these but Walmart has a over the counter option as does Sam's Club.
I always get a print out of my blood work and if you google the terms you don't understand it will tell you what each item is. Some of the terms refers to the size and shape of the red blood cells . Also as to the constipation issue my Doctor told me to take Myrlax daily if needed as the Hydra will constipate you. I found some iron pills that makes me go usually within a hour after I take them on an empty stomach you just have to try different brands until they work.
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. ☺️
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.
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
@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
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@twitt1949
Lori's not just nice, she's incredibly knowledgeable. She has studied MPNs for nearly a decade.
My oncologist diagnosed my ET, but it's Lori who's taught me how to live with my blood cancer.
Thank you, Lori, for being our shining light.
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3 Reactions@loribmt
Hi Again
I'm sorry for using the word janitor. That was uncalled for and I didn't mean anything by it. Its obvious by talking with you that you are very much involved with MDS and cancers, and it was very calming to talk to you. You mentioned things that might not be mentioned at the doctors office. But I was just curious what made you so intelligent/knowledge about cancer. But just like many forums there is always some one that involved in conversations that come off as an expert and has done or seen it for the last 50 yrs when actually exposed at some point as a Mr. fix it wanna be fraudster.
Anyways keep up what you are doing. It does calm nerves and makes people feel better.
-
Like -
Helpful -
Hug
1 Reaction@twitt1949 Your question made me chuckle this morning…Would you believe that I am a 1954 model of AI? (Acting intelligent). 😂 In reality, I’m long retired from a 30+ year career in dentistry.
Now I’m a volunteer mentor in Connect where I can use my life experiences to help offer assistance, reassurance and hope to others facing a life altering diagnosis. Seven years ago, right now, I was in a challenging odyssey for survival with AML, (acute myeloid leukemia). That’s MDS’s aggressive, ugly step sister. Months of intense chemo and a subsequent bone marrow transplant left me fascinated with blood cancers and stem cell transplantation.
At the time I had no inkling about blood cancers or bone marrow transplants or met anyone with whom I could commiserate. It would have felt less isolating if I’d been able to speak with someone who had firsthand knowledge of what I was going through. My medical teams were great, but they could only talk the talk. They hadn’t walked the walk.
Having come out on the other side of both issues, this became my opportunity to be a lifeline, to pay it forward to anyone who could use a mentor. It’s very rewarding to know I’ve been able to help someone through a rough patch.
In a shameless plug, you might be interested in reading a little story Mayo published a couple of years ago about my interaction with someone whom I actually got to meet in person through mentoring them. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I wish you well along your journey. Best wishes for a squeaky clean PET scan!
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4 Reactions@loribmt
Lori. Can I ask what you do for a living? Are you a doctor, nurse, or the janitor? Sorry didn't mean that. What is your expertise with MDS?
I already had the reflux for years so the Family Doctor has me on famotidine 2 pills daily. That helps I have a prescription for these but Walmart has a over the counter option as does Sam's Club.
-
Like -
Helpful -
Hug
1 ReactionI always get a print out of my blood work and if you google the terms you don't understand it will tell you what each item is. Some of the terms refers to the size and shape of the red blood cells . Also as to the constipation issue my Doctor told me to take Myrlax daily if needed as the Hydra will constipate you. I found some iron pills that makes me go usually within a hour after I take them on an empty stomach you just have to try different brands until they work.
-
Like -
Helpful -
Hug
1 Reaction@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@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.
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Hug
4 ReactionsHi @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
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
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Like -
Helpful -
Hug
1 Reaction