MDS and walking.

I was diagnosed with MDS low to mid-range in October 2023. By April 9th, I had a Bone Marrow Transplant. Did you check side effects of MDS? I have walked 4-6 miles every day since late May after my transplant. I do not have big joint pain. What meds are you on?

@katgob
I am no meds. I'm told there are no meds. Since I'm 77, they tell me a bone marrow transplant is out of the question. Sounds like you are in good shape. I did a search for side affects and under certain conditions with low red blood cells my legs don't have enough oxygen.
How old were you when you had your bone marrow transplant? What was it like right after? Long recovery?

@twitt1949
I was 63, heading to 64. The first 100 days were not bad for me. It has now been 2 years, and i have had few issues

Mornin’ @twitt1949 I’m still mystified that your doctor has told you there are no medications for MDS besides a bone marrow transplant.
While a bone marrow transplant offers the only potential cure, there are treatments for MDS patients which may help control or slow the progression of the disease. There are also medications to promote red blood cell growth which may help with anemia. If platelets or red blood counts get low, there are also transfusions to make up the deficits.

To help with that blood circulation in your legs, I mentioned a while ago about elevating them a couple times daily. Making sure your legs are actually above your heart. It is really helpful to lie on a sofa and then swing the legs up onto the back of the sofa while you’re resting. Just takes 15-20 minutes. Good time to nap or read a book.

You have an upcoming appointment with your hematologist/oncologist in a couple of weeks. Doctors want to know things such as:
Have your symptoms changes since our last visit?
Have your symptoms been continuous or occasional?
How severe are your symptoms?
What, if anything, seems to improve your symptoms?
What, if anything, appears to worsen your symptoms?

So think about answers to those questions. From what you’ve shared here, you’ve noticed a few changes since your last meeting with your doctor.

Have your list of questions ready to go. I think you have a few things to discuss. Some suggestions from the Mayo website:
What type of MDS do I have?
Will I need more tests? What is my prognosis?
What is my risk of leukemia?
If I need treatment, what are my options and what do you recommend?
I have other health conditions. How can I best manage them together?
Are there restrictions I need to follow?

Just tossing those ideas out there for you. When is your appointment?

@loribmt
I think I have a video conference call with my VA doctor on May 4th. Then I have a meeting with a doc from my regular cancer/regular insurance doc on May 12 . I have never seen him before as my other doctor went on to some other job in the med field. I will get some questions available and ask him for some answers.

My husband wears those circulation socks. He has MDS and can walk around the house all day without much problems . He still helps in the kitchen too . I am grateful !

Hi Lori....I guess she has mentioned lot of the things you wonder about. She did say transfusions are available if necessary someday of needed. She wants blood tests every 3 months then we discuss the results. She did say I am very low or low risk. Life expectancy 7-8-9 yrs. She has talked a lot but most if it is way over my head and there for I can't remember what she has said. I've added the results of my blood test from a couple weeks ago. Hope they mean something to you. Do you see anything I should be aware of?

@twitt1949 @katgob In a similar situation with numbers being 'too good' to move forward for just over a year now with all of last year those numbers kept declining though still too good.
In late October last year I began Traditional Chinese Medicine (Acupuncture, Massage, Meditation, Herbs). This has at least stabilized most results with some minor improvements in others. Best of all is my legs, which felt like the femurs were made of ice and painful, are warm again!
Between getting the spleen to help make healthier blood and the herbs for resiliency I am back training for another race in December...while still lacking the endurance I had prior - as my oncologist calls it my bone marrow is lazy - to compete in another ultra-marathon, at least now I have a goal to aim for as a fund-raiser for Blood Cancer United, specified for MDS research/advocacy.
Gonna keep moving forward as much as possible until I cannot so we can gain better knowledge and research.

G’mornin’ @twitt1949 It can be really helpful to have someone with you at your appointments, whether at home with Teleconference in person at the office.

I know from personal experience that appointments are short, there is much to discuss and conversations jump from one thing to the next. So have your wife sit in and take some quick notes as your doctor is talking. In fact, for my Mayo appointments, even though I am entirely lucid (haha well, maybe not totally) it’s a requirement to have my ‘caregiver’ accompany me to appointments. That way there is an extra set of ears.

Doctors appreciate questions. But it’s important to actually have your questions and concerns written down on a piece of paper in front of you or notes on the phone. That way it’s easier to keep on task with brevity so that time isn’t lost.

If you’re not understanding something at the time your doctor is explaining, just say so! It’s ok to stop the flow. Just wave your hand a moment and say something like, “Just a sec, I have a quesiton about that, or what does that actually mean?” That type of thing. This is your health. You want answers.

As we’ve talked about before, MDS is a condition where the bone marrow isn’t able to keep up production of one or more types of blood cells. I may have posted articles for you before. But here are two that give pretty straightforward information on MDS. I seldom cite WEB MD but this is a comprehensive article that might be helpful. Then the other is from Cleveland Clinic.
Webmd:
https://www.webmd.com/cancer/lymphoma/myelodysplastic-syndrome-causes-symptoms-treatment
Clevelandclinic:
https://my.clevelandclinic.org/health/diseases/6192-myelodysplastic-syndrome-myelodysplasia
You asked about the results of your bloodwork. Keeping in mind that members in Connect aren’t able to interpret test results, diagnose or offer treatments. But we can use our personal experiences to offer assistance. So, with that being said, there have been some changes in your current numbers compared with previous results.
As you can see on your results, in the left hand column are the ‘normal’ levels for each type of test.
WBC (white blood counts) are lower which can leave you more prone to infections. That can mean airborne respiratory diseases but also fungal infections from air and soil, infections from cuts, etc.. So be mindful to avoid situations of exposure and maybe mask up if you’re out raking, working with soil, spending time indoors with people, etc.
RBC (red blood count) and subsequently the hemoglobin numbers are lower. Reb blood cells carry oxygen throughout our body. The normal hemoglobin levels for men are 13.5 to 17.5.
Your level is now 11.6. When levels of hemoglobin (Red blood cells) are lower than the norm, symptoms such as getting winded, legs feeling heavy, fatigue becomes more noticeable. At some point your doctor may suggest a medication which can help the body produce more red blood cells. If the hemoglobin level drops to a certain level then doctors generally order a blood transfusion to bring the number back up.
Similarly with platelets. As we talked about before, low platelets can have symptoms such as bleeding gums, unexplained bleeding, and such. If the level gets too low, the doctor can order a platelet transfusion.
The RDW on your test, is red cell distribution width. It’s a blood test that looks at variations in red blood cell size. A high RDW can be a sign of conditions like anemia, which is reflected also in your lower RBC and lower hemoglobin.

So you have a few things to talk about with your doctors.