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Living with MDS
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?
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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. ☺️
Lori, one more question for now: Do you actually sleep? 🙂
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1 ReactionHello 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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5 Reactions😂 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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3 ReactionsJust 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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2 ReactionsI 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…
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1 ReactionGood morning, @jps01 I think we’re getting to be old friends here…I’m always popping up with tidbits for you. ☺️
I don’t understand the comment from your hematologist that transfusions will accelerate or trigger leukemia cells. Transfusions are an integral part of treatment for patients with blood conditions/cancers such as MDS and AML.
Most everyone I know, including myself, were given transfusions (blood and platelets) as a lifeline as the blast cells (immature white blood cells or, leukemic cells) proliferated and were crowding out the red blood cells. The anemia was staggering.
The transfusions can help reduce the symptoms of anemia,
prevents or treat bleeding associated with thrombocytopenia, which is low platelet count. And it can help increase white blood cells to fight infections.
~HEALTHLINE.com
https://www.healthline.com/health/anemia/blood-transfusions-for-myelodysplastic-syndromes~medical news today article
https://www.medicalnewstoday.com/articles/acute-myeloid-leukemia-blood-transfusion
While your cytogenetic report indicates you’re fortunate to be at a low risk for development of anything in the future, I just wanted to give you the information about transfusions.
If you do require one or if your anemia gets too pronounced over time, I hope your doctor will consider a transfusion for you. For me it was getting a hit of 10 cups of coffee! 😅 Life saver!
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1 ReactionGood afternoon Lori and Snakebite, thank you again for your persistence in communicating. Those are indeed interesting articles. The hematologist who has been advising me is all-in, engaged, and wonderful. Yet, I also mentioned earlier the desire (desirability?) of getting a second opinion. What you have both been stating is confirming the advisability of doing so. And this is now going to happen for me in mid-October. In the meantime, need to continue to read, stay out of trouble, and take naps. 😊
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3 ReactionsHey @jps01. Getting a second opinion is always an excellent idea. But the notion of you staying out of trouble is disappointing me! 😂
Over the years I've had occasions where I was encouraged by my oncologist to get a second opinion. He even set up both of the appointments for me. It never hurts to hear what another professional has to say. I wish you well with your Oct visit.
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