Living with MDS

Posted by momz @momz, Sep 4, 2023

I finally got my answer to what I have and trying to wrap my mind around it.
I am an ovarian cancer survivor of 20 years and have MDS for the last 7
Currently on watch and hate to even say wait!! What is the longest someone has had with no treatments? And what was the reason for treatment when it was needed?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@snakebite

Just a quick comment. First, napping is good. It is certainly an indicator that your body most likely needs the extra rest. Sleep depravation plays a major factor in you health. Also, getting a Blood Transfusion when your numbers are low not only makes you feel better, which helps your attitude, but it also buys you time for other treatments to work and do their job. I dealt with them for years. At first I fought them thinking it was a last resort, or the beginning of the end.... it is neither, it is a necessary aid to help you get over the Hump. The Blood transfusions carried me through the really tough times and allowed me to make great progress in my journey back to a more normal life. Treatments like Dacogen can really take the wind out of your sails while it is doing it's job fighting the Cancer cells. Just about everything, RBC, WBC, PLT go down. So that transfusion of Blood really does give you a needed "Pick me up". Don't avoid them.

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I certainly appreciate your comments on naps and transfusions. At this point in my condition, i.e., that my cytogenetics indicate that I am in a “good” risk category, the hematologist stated that it is risky to give me transfusions, since they might result in accelerating the leukemia cells. In other words, I am currently fortunate since I can live with the anemia (what a pain), work at avoiding infections (had three over the past few months), try to get the time for regular naps, and get on with life. But I will certainly research all of the alternative treatments offered through the various comments offered… I am most aprrecative…

REPLY

Just a quick comment. First, napping is good. It is certainly an indicator that your body most likely needs the extra rest. Sleep depravation plays a major factor in you health. Also, getting a Blood Transfusion when your numbers are low not only makes you feel better, which helps your attitude, but it also buys you time for other treatments to work and do their job. I dealt with them for years. At first I fought them thinking it was a last resort, or the beginning of the end.... it is neither, it is a necessary aid to help you get over the Hump. The Blood transfusions carried me through the really tough times and allowed me to make great progress in my journey back to a more normal life. Treatments like Dacogen can really take the wind out of your sails while it is doing it's job fighting the Cancer cells. Just about everything, RBC, WBC, PLT go down. So that transfusion of Blood really does give you a needed "Pick me up". Don't avoid them.

REPLY
@jps01

Lori, one more question for now: Do you actually sleep? 🙂

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😂 Good morning, @jps01. You bet I sleep! Soundly from about 9:30 PM to around 5:30 AM. Then I’m the Energizer Bunny for the rest of the day. 🐰

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@loribmt

Welcome to Connect, @tjakusz I’m sorry to hear you developed AML. There are several of us in the blood cancer support group who have had AML, received bone marrow transplants and we’re doing great.
I just celebrated my 4th rebirth day the end of June, @alive is in her 7th year post transplant, @edg1123 at 3 years and @kt2013 with a milestone of 10 years! So there is hope beyond all the hoopla your going through with the AML treatments, reaching and keeping a level of remission until Transplant.

So if you have any questions at all don’t hesitate to pop into our discussions or ask us anything! We’re here to offer support! ☺️

~Acute myeloid leukemia (AML): What can I expect?
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

What treatments are you going through for the AML? Do you have any pesky mutations?

Jump to this post

Hello tjakusz! Welcome to this special club. Nobody wants to be in our group, but once you are it is a great place to get information and support. I am kmz2013 and am celebrating every day living in my 10th year of AML remission. Transplant was no picnic, but I knew it was my best chance to get to a durable remission. The key for me was to organize my support team of family, friends, and work colleagues to get through the side effects, tests, and appointments that accompany transplant. My other goal was to stay in the day. Yesterday is gone, tomorrow is uncertain, so today is my present. It isn’t always easy to ask for help, but I like helping others, so this was my turn to allow others to experience the joy of giving. Best wishes, we will be thinking and praying for you. Keep in touch, I am sending you a sunrise!

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@loribmt

Hi @jps01, I have to admit one of the most difficult things for me is to relent and take a nap! I think I read in an earlier comment of yours that it’s embarrassing now to need naps. I hear you! It feels like I’m admitting defeat or worse yet, I might miss something! 😅

‘Listen to your body’ was a mantra repeated over and over by my transplant team. Ha, sometimes I have selective hearing for my body but I have learned to eventually give in and take breaks more frequently. So I’m happy to hear you’re taking naps because they have recuperative powers.

Regarding your blood numbers. Many of the blood perimeters in the US are reported in deciliters (dL)
Yours from Canada appear to be labeled on a full liter basis. To convert those results over to US numbers, divide by 10. Your numbers:
WBC 1.7L = .17dL.
RBC 2.52L = .25 dL
HGB 97L = 9.7 dL
I hope you find this little trick helpful. At least it will get you on the same page with comparison of blood results.

You mentioned a bone marrow transplant; I mentor at my local oncology center for patients who have AML, MDS or other blood conditions and will require a bone marrow transplant. Last summer there was a gentleman of 75 who had a transplant and he is doing fabulously. So never say never. ☺️ However, it is a rigorous undertaking and requires some heavy chemotherapy…and infection is a risk. But, there are some newer lighter chemotherapies which are proving to be really helpful for patients who aren’t able to do a transplant. They’re in the literature links I posted. But like I said before, you’re not needing any treatment now and this may not even change.

From my experience I don’t believe getting blood transfusions will accelerate leukemia cells. It won’t treat the root cause of the proliferation of immature white blood cells called blasts, but it would give you a boost of red blood cells if yours were depleting quickly. The white blood cells eventually overcrowd the red cells to the point where a transfusion is required. Transfusions aren’t sustainable long term. So if you get to that point where you’re needing frequent blood transfusions, a treatment plan would most likely be suggested to stop the progression/proliferation of cancer cells.
Now it’s my time to nap. If you run out of articles I can always find more for you. ☺️

Jump to this post

Lori, one more question for now: Do you actually sleep? 🙂

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@jps01

Lori, your response is wonderful! I think it will take me weeks to read and research these additional articles you suggested. 😊 I am grateful, and I will.
Re the blood measurements: My WBCs are 1.7L, and the RBCs are 2.52L. I would lie to be able to better relate to such comments as “Hgb above 8”, compared to my HGB being 97L.
I am under the impression that treatments for my condition are limited due to being informed that HEPO, for instance, with high HGB could lead to a stroke, or that blood transfusions could accelerate the leukemia cells, whereas a stem cell transplant is too risky due to the risk of infection and my age.
In any event, you have already provided with lots of information, and I am grateful. BTW, I just got up from a nap. Your turn. 😊 Merci.

Jump to this post

Hi @jps01, I have to admit one of the most difficult things for me is to relent and take a nap! I think I read in an earlier comment of yours that it’s embarrassing now to need naps. I hear you! It feels like I’m admitting defeat or worse yet, I might miss something! 😅

‘Listen to your body’ was a mantra repeated over and over by my transplant team. Ha, sometimes I have selective hearing for my body but I have learned to eventually give in and take breaks more frequently. So I’m happy to hear you’re taking naps because they have recuperative powers.

Regarding your blood numbers. Many of the blood perimeters in the US are reported in deciliters (dL)
Yours from Canada appear to be labeled on a full liter basis. To convert those results over to US numbers, divide by 10. Your numbers:
WBC 1.7L = .17dL.
RBC 2.52L = .25 dL
HGB 97L = 9.7 dL
I hope you find this little trick helpful. At least it will get you on the same page with comparison of blood results.

You mentioned a bone marrow transplant; I mentor at my local oncology center for patients who have AML, MDS or other blood conditions and will require a bone marrow transplant. Last summer there was a gentleman of 75 who had a transplant and he is doing fabulously. So never say never. ☺️ However, it is a rigorous undertaking and requires some heavy chemotherapy…and infection is a risk. But, there are some newer lighter chemotherapies which are proving to be really helpful for patients who aren’t able to do a transplant. They’re in the literature links I posted. But like I said before, you’re not needing any treatment now and this may not even change.

From my experience I don’t believe getting blood transfusions will accelerate leukemia cells. It won’t treat the root cause of the proliferation of immature white blood cells called blasts, but it would give you a boost of red blood cells if yours were depleting quickly. The white blood cells eventually overcrowd the red cells to the point where a transfusion is required. Transfusions aren’t sustainable long term. So if you get to that point where you’re needing frequent blood transfusions, a treatment plan would most likely be suggested to stop the progression/proliferation of cancer cells.
Now it’s my time to nap. If you run out of articles I can always find more for you. ☺️

REPLY

Lori, your response is wonderful! I think it will take me weeks to read and research these additional articles you suggested. 😊 I am grateful, and I will.
Re the blood measurements: My WBCs are 1.7L, and the RBCs are 2.52L. I would lie to be able to better relate to such comments as “Hgb above 8”, compared to my HGB being 97L.
I am under the impression that treatments for my condition are limited due to being informed that HEPO, for instance, with high HGB could lead to a stroke, or that blood transfusions could accelerate the leukemia cells, whereas a stem cell transplant is too risky due to the risk of infection and my age.
In any event, you have already provided with lots of information, and I am grateful. BTW, I just got up from a nap. Your turn. 😊 Merci.

REPLY
@jps01

Thank you to all of you for your comments, suggestions (especially regarding attitude), and explanations. Although I am, along with Snakebite one of the oldest people on this thread, I feel that I am the most fortunate in light of the fact that I am just relatively recently anointed with MDs.
I live in Canada, and cannot compare my blood measurements to the US, sincewe are in Celsius (and I can’t figure it out). But my white and red cells are off. And because of my age, the hematologist has informed me that I should be able to live on for a quite a while, as long as I stay away from a major infection. If not, all bets are off.
Being anemic and neutropenic is an issue, but there is no pain. And I can take a nap, be careful, wear masks in indoor public spaces (Covid is still with us), and enjoy life.
As I had mentioned earlier, I am ready to go on living with how I stand, but am getting pressure from family to get a second opinion.
But the literature on MDS, in some respect, does not give many alternatives for treatment…
Yet who knows, maybe I will also be able to walk two swift “kilometres” soon. 😊

Jump to this post

Hi @jps01, from my experience with leukemia and hundreds of blood tests over the past 4 years, all of my tests results are presented in the metric system. It’s a universally accepted standard for healthcare world wide. So your numbers from Canada should parallel those in the US, if that helps you out.

I’m happy to hear you’re in the low risk MDS group for progression. Deciding to take a treatment at this point is a personal decision. The watch-and-wait (or active surveillance) approach lets you avoid therapy's side effects until you need treatment. Treating MDS during this early stage hasn’t proved helpful according the the Leukemia & lymphoma society;
https://www.lls.org/myelodysplastic-syndromes/treatment/watch-and-wait

I did find a list of potential treatments for MDS should you be interested in the future:
Less aggressive treatments are:
Azacitidine (Vidaza)
Decitabine (Dacogen)
Decitabine and cedazuridine (Inqovi)
~~~
Vidaza
https://news.cancerconnect.com/myelodysplastic-syndrome/vidaza-improves-survival-in-myelodysplastic-syndromes#:~:text=Vidaza%20was%20the%20first%20agent%20approved%20for%20the,effects%20on%20survival%20have%20not%20been%20clearly%20established.
~~~~~
INQOVI https://www.inqovi.com/?msclkid=782b208c32841e96dd324473bf27d947&utm_source=bing&utm_medium=cpc&utm_campaign=Patient%20-%20Unbranded%20-%20Treatment&utm_term=how%20to%20treat%20myelodysplastic%20syndrome&utm_content=Treatment%20-%20Myelo

~~~~~
This article explains MDS and lists a number of potential treatments
https://www.cancer.net/cancer-types/myelodysplastic-syndromes-mds/types-treatment
~~~~
Reblozyl to treat anemia in MDS https://www.curetoday.com/view/fda-approves-reblozyl-to-treat-anemia-in-mds-subset

I love your attitude and honestly that’s the best way to live life! Enjoy every day while still taking those much needed precautions to avoid illness. I’m right there with you but I don’t let a compromised immune system stop me from enjoying my second chance with life. ☺️

REPLY

Thank you to all of you for your comments, suggestions (especially regarding attitude), and explanations. Although I am, along with Snakebite one of the oldest people on this thread, I feel that I am the most fortunate in light of the fact that I am just relatively recently anointed with MDs.
I live in Canada, and cannot compare my blood measurements to the US, sincewe are in Celsius (and I can’t figure it out). But my white and red cells are off. And because of my age, the hematologist has informed me that I should be able to live on for a quite a while, as long as I stay away from a major infection. If not, all bets are off.
Being anemic and neutropenic is an issue, but there is no pain. And I can take a nap, be careful, wear masks in indoor public spaces (Covid is still with us), and enjoy life.
As I had mentioned earlier, I am ready to go on living with how I stand, but am getting pressure from family to get a second opinion.
But the literature on MDS, in some respect, does not give many alternatives for treatment…
Yet who knows, maybe I will also be able to walk two swift “kilometres” soon. 😊

REPLY
@tjakusz

I was very fortunate. I was diagnosed with MDS in 2019 and only needed one transfusion up diagnosis. For the next 3 1/2 years, I needed occasional arensp injections to raise HGB which worked great. All my other counts were normal Then last June, I got covid and it all changed. My WBC count skyrocketed and never returned to normal. A bone marrow biopsy showed I had flipped to AML and have been in treatment since. Hoping for bone marrow transplant soon. I wish you well!!!!

Jump to this post

Welcome to Connect, @tjakusz I’m sorry to hear you developed AML. There are several of us in the blood cancer support group who have had AML, received bone marrow transplants and we’re doing great.
I just celebrated my 4th rebirth day the end of June, @alive is in her 7th year post transplant, @edg1123 at 3 years and @kt2013 with a milestone of 10 years! So there is hope beyond all the hoopla your going through with the AML treatments, reaching and keeping a level of remission until Transplant.

So if you have any questions at all don’t hesitate to pop into our discussions or ask us anything! We’re here to offer support! ☺️

~Acute myeloid leukemia (AML): What can I expect?
https://connect.mayoclinic.org/discussion/can-someone-address-acute-myeloidal-leukemia/

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

What treatments are you going through for the AML? Do you have any pesky mutations?

REPLY
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