Good morning, @tyson1221 I know you’re anxious to get a diagnosis because of your low blood counts in your latest CBC. You’ve mentioned that you’re waiting for a bone marrow biopsy in previous posts and honestly, there is just no way of knowing what type of MDS you have, what will be necessary for treatment, or when you will need to begin treatment until you receive the diagnosis from your hematologist.
There are some people who can go for years without treatment depending on the type. I’m providing some information below to let you know the different conditions under the heading of MDS- Myelodyplastic Syndrome.
I know it’s really hard to be patient when you’re awaiting a diagnosis. But speculating is just a time robber and anxiety builder. So try to refocus your thoughts on some positive things that can distract you from this until you get an answer. I’ll be waiting right with you for the results. 🙃
I know already went thru colon ca an nodule on lung been 8 years an now gotta beat this having people like u an others on these sites is comforting an ways to learn wats goin on an makin all of us better advocates for how to go thru our journey 😎💪
Perhaps there is already a comment string for this issue. I was diagnosed with MDS. It took 3 bone marrow biopsies over 2 years to decide on MDS. Will need to ask my Dr which type MDS. Low platelets are my issue, usually running between 38 -48. Even though several specialists will not firmly agree, I had 37 aggressive radiation doses near the primary area for new cells following the removal of my cancerous prostate two year previously. My Hematologist/Oncologist prescribed Danazol in April ‘22, as there had been studies showing Danazol might increase platelets. That turned out, potentially, to be a problem. But that is a comment for a Kidney discussion. How long might my platelet count stay in this range?
Hi Howard, I’d been wondering how you’re doing on the chemo. You asked me in another post about having a SCT and what it was like. This is going to be lengthy so sit back and relax…
I’ll be open and tell you that having an allogenic SCT can be taxing. But you’re already going through a difficult period with your MDS. MDS is not curable and it is progressive. Ultimately a bone marrow transplant (a stem cell transplant) is the only potential cure for this condition.
There are a number of questions that have to be answered before perusing the SCT. First, there will need to be a donor secured for you. Your doctors will run DNA tests and those results will be matched with a potential donor on a national/international marrow registry. This can take some time…weeks or months depending on your genetic profile.
Your doctors will take into account any other illnesses or conditions you have. They are referred to as Comorbidities in case you see that on your portal anywhere.
Before you can go ahead with a SCT, you’ll also have quite a few tests to make sure your body can handle the stresses of the transplant…from the conditioning chemo and the transplant itself.
Most commonly there is a MUGA scan to see how your heart pumps blood, pulmonary function tests for your lungs, kidney function tests, X-rays, CT scans, etc., along with educational classes for food safety and keeping free from infection during and after recovery.
A week before the SCT day…day zero…you’ll start a 5 day course (usually) of preconditioning chemo which clears the marrow and wipes your lymph system. This provides a squeaky clean, cancer free environment for your new cells that will be transfused on your transplant day.
The actual transplant is anticlimactic…it works just like a blood transfusion and takes about 15-30 minutes.
For me, the harder part came afterwards. The first month you may feel nausea, possible digestive issues, mouth sores and extreme fatigue. Every body reacts differently but most experiences the fatigue. After that first month things start easing up a little. Recovery is slow. There is also a risk of Graft Vs Host Disease (GVHD) that you’ll be monitored for. That’s a reaction which is characterized by inflammation in different organs in the body including skin, intestinal tract, etc. But your team would be monitoring daily and you’d be given treatment immediately.
Depending where you have the transplant each clinic is different. I had my transplant at Mayo-Rochester and I can’t imagine being in better care anywhere. Mayo, at least 4 years ago, required transplant patients to live no more than 30 minutes from the clinic for at least 100 days. We are outpatients there but report to the Clinic daily. So you’re not in the hospital but ‘home’ recuperating. For me it was a hotel suite my husband and I stayed in which was 2 blocks from the Clinic.
I recently mentored a woman in my hometown who had MDS and received a SCT. She was actually in a hospital for 4 weeks but could then return to her home 2 hours away. She had to go every 2 weeks for a followup appt. So each center can have different parameters. Honestly, knowing how challenging this is, I really appreciated being so near the clinic for a longer period of time. There can be a number of issues arising that need to be tended to quickly.
You’ll be a number of medications for a while until you’re off the anti rejection meds. That can take several months to a couple years after transplant. They are a ‘temporary’ immune system until your new one is fully functional.
I know this all sounds frighting, Howard. But I have to tell you after about 2.5 -3 months I was feeling better every day. At about 2 years, I felt like nothing ever happened. And now, I’m just days away from my 4 rebirth day. I feel amazing, super healthy. I just had labs run 2 days ago and every single number was right down the middle!
In my experience, the transplant gave me a second chance at life. I’m in a durable remission with no medications, no transfusions and blood tests only every 3 months. It was totally worth the effort.
Hi Howard, I’d been wondering how you’re doing on the chemo. You asked me in another post about having a SCT and what it was like. This is going to be lengthy so sit back and relax…
I’ll be open and tell you that having an allogenic SCT can be taxing. But you’re already going through a difficult period with your MDS. MDS is not curable and it is progressive. Ultimately a bone marrow transplant (a stem cell transplant) is the only potential cure for this condition.
There are a number of questions that have to be answered before perusing the SCT. First, there will need to be a donor secured for you. Your doctors will run DNA tests and those results will be matched with a potential donor on a national/international marrow registry. This can take some time…weeks or months depending on your genetic profile.
Your doctors will take into account any other illnesses or conditions you have. They are referred to as Comorbidities in case you see that on your portal anywhere.
Before you can go ahead with a SCT, you’ll also have quite a few tests to make sure your body can handle the stresses of the transplant…from the conditioning chemo and the transplant itself.
Most commonly there is a MUGA scan to see how your heart pumps blood, pulmonary function tests for your lungs, kidney function tests, X-rays, CT scans, etc., along with educational classes for food safety and keeping free from infection during and after recovery.
A week before the SCT day…day zero…you’ll start a 5 day course (usually) of preconditioning chemo which clears the marrow and wipes your lymph system. This provides a squeaky clean, cancer free environment for your new cells that will be transfused on your transplant day.
The actual transplant is anticlimactic…it works just like a blood transfusion and takes about 15-30 minutes.
For me, the harder part came afterwards. The first month you may feel nausea, possible digestive issues, mouth sores and extreme fatigue. Every body reacts differently but most experiences the fatigue. After that first month things start easing up a little. Recovery is slow. There is also a risk of Graft Vs Host Disease (GVHD) that you’ll be monitored for. That’s a reaction which is characterized by inflammation in different organs in the body including skin, intestinal tract, etc. But your team would be monitoring daily and you’d be given treatment immediately.
Depending where you have the transplant each clinic is different. I had my transplant at Mayo-Rochester and I can’t imagine being in better care anywhere. Mayo, at least 4 years ago, required transplant patients to live no more than 30 minutes from the clinic for at least 100 days. We are outpatients there but report to the Clinic daily. So you’re not in the hospital but ‘home’ recuperating. For me it was a hotel suite my husband and I stayed in which was 2 blocks from the Clinic.
I recently mentored a woman in my hometown who had MDS and received a SCT. She was actually in a hospital for 4 weeks but could then return to her home 2 hours away. She had to go every 2 weeks for a followup appt. So each center can have different parameters. Honestly, knowing how challenging this is, I really appreciated being so near the clinic for a longer period of time. There can be a number of issues arising that need to be tended to quickly.
You’ll be a number of medications for a while until you’re off the anti rejection meds. That can take several months to a couple years after transplant. They are a ‘temporary’ immune system until your new one is fully functional.
I know this all sounds frighting, Howard. But I have to tell you after about 2.5 -3 months I was feeling better every day. At about 2 years, I felt like nothing ever happened. And now, I’m just days away from my 4 rebirth day. I feel amazing, super healthy. I just had labs run 2 days ago and every single number was right down the middle!
In my experience, the transplant gave me a second chance at life. I’m in a durable remission with no medications, no transfusions and blood tests only every 3 months. It was totally worth the effort.
Yes I am aware of wats ahead an your story is great to hear an encouraging I’m gona have it done at Jefferson hospital in philly I’m praying I come out on other side if I’m able to have the SCT
Yes I am aware of wats ahead an your story is great to hear an encouraging I’m gona have it done at Jefferson hospital in philly I’m praying I come out on other side if I’m able to have the SCT
Hi Howard! For me, the odds of living even another year were very low if I didn’t have the transplant. It was my only hope for longevity so when I heard that news, I was like “Damn the torpedos, full speed ahead!” I didn’t hesitate. The desire for a 2nd chance at life outweighed the risks, I felt. A STC is quite the journey and well worth the effort. There is very little that has changed in my life at this point, 4 years later.
If a SCT is in your future, I’m here with you every step of the way. There are other members in this group who have also had stem cells transplants so you’re not alone, we’ll support and encourage you in any way we can. ☺️
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Good morning, @tyson1221 I know you’re anxious to get a diagnosis because of your low blood counts in your latest CBC. You’ve mentioned that you’re waiting for a bone marrow biopsy in previous posts and honestly, there is just no way of knowing what type of MDS you have, what will be necessary for treatment, or when you will need to begin treatment until you receive the diagnosis from your hematologist.
https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/diagnosis-treatment/drc-20366980There are some people who can go for years without treatment depending on the type. I’m providing some information below to let you know the different conditions under the heading of MDS- Myelodyplastic Syndrome.
Here’s an easy guide on MDS conditions from the American Cancer Society https://www.cancer.org/cancer/myelodysplastic-syndrome/if-you-have-myelodysplastic-syndrome.html
I know it’s really hard to be patient when you’re awaiting a diagnosis. But speculating is just a time robber and anxiety builder. So try to refocus your thoughts on some positive things that can distract you from this until you get an answer. I’ll be waiting right with you for the results. 🙃
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3 ReactionsThanks for your feed back an I will post my dx wen I get it your info an empathy is greatly appreciated👍💪
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2 ReactionsI really do understand what you’re going through and I’m here for you any time. Waiting for answers is a real test of our patience. ☺️
I know already went thru colon ca an nodule on lung been 8 years an now gotta beat this having people like u an others on these sites is comforting an ways to learn wats goin on an makin all of us better advocates for how to go thru our journey 😎💪
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Like -
Helpful -
Hug
2 ReactionsPerhaps there is already a comment string for this issue. I was diagnosed with MDS. It took 3 bone marrow biopsies over 2 years to decide on MDS. Will need to ask my Dr which type MDS. Low platelets are my issue, usually running between 38 -48. Even though several specialists will not firmly agree, I had 37 aggressive radiation doses near the primary area for new cells following the removal of my cancerous prostate two year previously. My Hematologist/Oncologist prescribed Danazol in April ‘22, as there had been studies showing Danazol might increase platelets. That turned out, potentially, to be a problem. But that is a comment for a Kidney discussion. How long might my platelet count stay in this range?
@corvairfan and @tyson1221, here are a few additional discussions on MDS that you may also be interested in:
- Myelodysplastic Syndrome (MDS) Myelodysplastic Syndrome (MDS)
- MDS treatment options other than bone marrow transplant https://connect.mayoclinic.org/discussion/mds-treatment-options-other-than-bone-marrow-transplant/
- Low Platelets with Myelodysplastic Syndrome (MDS) https://connect.mayoclinic.org/discussion/low-platelets/
So I have MDs now on chemo drugs to prepare me for SCT hopefully it will work but not sure if just takin meds would be better an try an live with it
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1 ReactionHi Howard, I’d been wondering how you’re doing on the chemo. You asked me in another post about having a SCT and what it was like. This is going to be lengthy so sit back and relax…
I’ll be open and tell you that having an allogenic SCT can be taxing. But you’re already going through a difficult period with your MDS. MDS is not curable and it is progressive. Ultimately a bone marrow transplant (a stem cell transplant) is the only potential cure for this condition.
There are a number of questions that have to be answered before perusing the SCT. First, there will need to be a donor secured for you. Your doctors will run DNA tests and those results will be matched with a potential donor on a national/international marrow registry. This can take some time…weeks or months depending on your genetic profile.
Your doctors will take into account any other illnesses or conditions you have. They are referred to as Comorbidities in case you see that on your portal anywhere.
Before you can go ahead with a SCT, you’ll also have quite a few tests to make sure your body can handle the stresses of the transplant…from the conditioning chemo and the transplant itself.
Most commonly there is a MUGA scan to see how your heart pumps blood, pulmonary function tests for your lungs, kidney function tests, X-rays, CT scans, etc., along with educational classes for food safety and keeping free from infection during and after recovery.
A week before the SCT day…day zero…you’ll start a 5 day course (usually) of preconditioning chemo which clears the marrow and wipes your lymph system. This provides a squeaky clean, cancer free environment for your new cells that will be transfused on your transplant day.
The actual transplant is anticlimactic…it works just like a blood transfusion and takes about 15-30 minutes.
For me, the harder part came afterwards. The first month you may feel nausea, possible digestive issues, mouth sores and extreme fatigue. Every body reacts differently but most experiences the fatigue. After that first month things start easing up a little. Recovery is slow. There is also a risk of Graft Vs Host Disease (GVHD) that you’ll be monitored for. That’s a reaction which is characterized by inflammation in different organs in the body including skin, intestinal tract, etc. But your team would be monitoring daily and you’d be given treatment immediately.
Depending where you have the transplant each clinic is different. I had my transplant at Mayo-Rochester and I can’t imagine being in better care anywhere. Mayo, at least 4 years ago, required transplant patients to live no more than 30 minutes from the clinic for at least 100 days. We are outpatients there but report to the Clinic daily. So you’re not in the hospital but ‘home’ recuperating. For me it was a hotel suite my husband and I stayed in which was 2 blocks from the Clinic.
I recently mentored a woman in my hometown who had MDS and received a SCT. She was actually in a hospital for 4 weeks but could then return to her home 2 hours away. She had to go every 2 weeks for a followup appt. So each center can have different parameters. Honestly, knowing how challenging this is, I really appreciated being so near the clinic for a longer period of time. There can be a number of issues arising that need to be tended to quickly.
You’ll be a number of medications for a while until you’re off the anti rejection meds. That can take several months to a couple years after transplant. They are a ‘temporary’ immune system until your new one is fully functional.
I know this all sounds frighting, Howard. But I have to tell you after about 2.5 -3 months I was feeling better every day. At about 2 years, I felt like nothing ever happened. And now, I’m just days away from my 4 rebirth day. I feel amazing, super healthy. I just had labs run 2 days ago and every single number was right down the middle!
In my experience, the transplant gave me a second chance at life. I’m in a durable remission with no medications, no transfusions and blood tests only every 3 months. It was totally worth the effort.
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Helpful -
Hug
3 ReactionsYes I am aware of wats ahead an your story is great to hear an encouraging I’m gona have it done at Jefferson hospital in philly I’m praying I come out on other side if I’m able to have the SCT
Hi Howard! For me, the odds of living even another year were very low if I didn’t have the transplant. It was my only hope for longevity so when I heard that news, I was like “Damn the torpedos, full speed ahead!” I didn’t hesitate. The desire for a 2nd chance at life outweighed the risks, I felt. A STC is quite the journey and well worth the effort. There is very little that has changed in my life at this point, 4 years later.
If a SCT is in your future, I’m here with you every step of the way. There are other members in this group who have also had stem cells transplants so you’re not alone, we’ll support and encourage you in any way we can. ☺️
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Helpful -
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3 Reactions