Living with MDS (Myelodyplastic Syndromes)

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.

grandmatoni | @grandmatoni | 1 day ago

In reply to @loribmt "Hi @grandmatoni Welcome to Connect. So glad you’ve chosen us to be your new friends and..." + (show)

@loribmt

Hi @grandmatoni Welcome to Connect. So glad you’ve chosen us to be your new friends and family. ☺️ We may be strangers but sharing a common bond with a medical condition can make for a tightly knit group.

You have a wonderfully positive attitude for dealing with all the changes that have occurred over the years. I think as we age, we realize there are always compromises. Hah, as if we have any other option but to go with the flow, right? But aging still comes as a shock! I was just at a graduation party yesterday. Oh my gosh, since when did I get to be oldest person at these parties! 😳 Now I’m the crazy old lady next door. Giggle

Back to business: Full disclosure, I do not have MDS but did have AML (acute myeloid leukemia) which is a related blood cancer. However, there are quite a few members who also have MDS with plenty of conversations regarding symptoms and treatments. Keeping in mind there are several types of MDS. Some have different risk profiles for progression. You appear to be in a lower risk group which is good news.
To get you introduced to more members, here is a link to all the discussions involving MDS references.
https://connect.mayoclinic.org/search/
The fatigue caused by MDS can be really frustrating when you feel like being active but lack the energy. It looks as though you have a great response to the REBLOZYL which is used to help treat the anemia related to MDS.

I know you’re worried about the white areas on your MRI for your leg. MRIs can pick up areas of inflammation. Sometimes, brighter spots can just be normal anatomical variations or cartilage irregularities. But you know your body better than anyone else and it’s ok to be the squeaky wheel to keep on having updates. So while it most likely isn’t anything of significance, you can certainly keep your doctor reminded of your concerns!
When you say the leg is numb, is it just in the same area shown on the MRI? Was this your oncologist reviewing the MRI?

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@loribmt It's kind of hard to really describe what I call numb. When my leg feels tender and I rub it, the feeling I get is like a numbness. It's not that I don't have any feeling in my leg, I do. It's just a weird feeling. Yes, my oncologist did review the MRI and had ordered the repeat MRI that showed no change. Maybe I'm just a worry wort. I had my blood test this morning and am waiting for the results to see if I need my injection on Thursday. It is so nice to have someone who understands some of what I'm experiencing, and someone I can feel at ease talking with. Thank you. It means a lot.

Lori, Volunteer Mentor | @loribmt | 14 hours ago

In reply to @grandmatoni "@loribmt It's kind of hard to really describe what I call numb. When my leg feels..." + (show)

Good morning, @grandmatoni I think being a worry-wort is such a human trait! Well, except for cats who think they’ll start to death at 3AM when their bowl is only half full of food yet. LOL.
If your oncologist has reviewed the MRIs, both the original and then subsequent imaging, with no discernible changes then I think you can relax about this being something to lose sleep over. It would be different if these areas on the MRI had enlarged. Whether or not this is correlating with the odd sensation in your leg may just remain a mystery. Does your leg develop this feeling after certain activities?

I know how things like that can eat at us and our brain loves to think the worst. I’m 72 and I swear every day there is some new ‘thing’ that reveals itself. 😅 But I’ve learned over my medical odyssey the past 7 years to not focus on ‘what if’ because most of the time there is nothing amiss! So all the time spent worrying just robbed me of precious time that could be used for doing something productive or enjoyable.
I’d encourage you to adopt that philosophy…IF something happens, THEN you and your doctor will take care of it. But to worry about a ‘what if’ situation only creates stress. It takes practice to refocus but it works! Ha, yes, I am always this perky and annoying. But I’m here if you need to talk. ☺️

Good luck with the blood test today! Maybe you won’t need your injection Thursday. But if you do, I know you realize how amazing it is to have these medications to keep us enjoying life! Hugs.

grandmatoni | @grandmatoni | 2 hours ago

Thank you, Lori. Yes, I will be getting my injection tomorrow. I think I'll be fine. When I come home from the med. center, my two youngest grandchildren will be at my house waiting for me - their mother, our daughter, will be helping grandpa paint the inside of our garage. My job will be to entertain them for a couple hours before I leave for one of my favorite outings - Young At Heart meeting with my church group (Pot luck lunch, entertainment, and Bingo), Last meeting until September. That is something that empties my mind of everything that is bothering me, I really enjoy those couple of hours. You have really perked me up. Again, thank you.

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