Living with MDS (Myelodyplastic Syndromes)

Oh Lori. I am so happy you
Know the treatments I am talking about. I know I must confuse you at times. This is why I bring my son with me when I see my oncologist because I am half listening and trying to grasp it all. I do have a very good support system and was very good mentally through breast cancer etc loosing my husband being diagnosed wet itch MDS right after his death. Having a hip
Replacement. All the hospital stays for pneumonia, severe ear infection, abscess in my stomach but that fall changed everything back in November where I fractured my vertebrae’s. I am
Doing better I think it’s just going to take time. Once I start my treatments I will also see how they affect me and what I need to do. Thanks so
Much for being there. My mind is all over the place because it seems one thing after the other. It never stops. I Also have my faith. I believe God is closer to
Us when we are sick.

Usually follow up every 6 months to one year

Lori, I just saw your comment about Crow’s 😜. My maiden name is Field and I married a Crow so that made me a FIELDCROW 🤣
Is that a good book? I’ll have to check it out!
I wanted to ask you what questions you would suggest I ask my Dr? Any advice for me about anything?

You’re absolutely right about having to self-advocate. No one knows your body better than you do and when you sense something isn’t right, keep pushing until you find the answers. The self diagnosing…well, I think we’ve all been there. At least it gives us something to do between appointments. 😁

Having a 2nd opinion can be useful in confirming a diagnosis. It may also help you and your husband feel more confident with your current doctor and treatment plan, or point you into another direction. It sounds like you have a good doctor who’s willing to reach out to colleague for his opinion. I’ve always appreciated that collaborative approach that my doctors have taken for a consensus of opinions.

Please me know what you find out. How often do you have labs for follow-up?

Thanks! Yes my hematologist told me that the Single Lineage Dysplasia is mainly from my platelets. But I have never had an issue with my platelets! I’ve always had terrible low WBC results. My RBC are thankfully normal. I’m not complaining. I’m grateful I’m considered low risk. I am concerned. I diagnosed myself with MSD probably over a year ago! My friends told me I’m not supposed to do that but you do have to self-advocate! My hematologist is going to discuss my case with his Dr friend at UVA and is going to get back to me. In the meantime we’ll just keep an eye on my labs. My husband wants me to go to UVA for a second opinion.

Welcome to Connect @afieldcrow…Alison. I love crows so I can’t help but admire your @name! Just now reading a book called The Comfort of Crows; A Backyard Year by Margaret Renkl. ☺️

I’m sorry to hear that you’re not feeling on top of the world right now and see that you’re newly diagnosed with MDS. That’s a blood condition that can affect production of one or more of the blood cell types. You mentioned having low platelets but your neutrophils (WBC) are also low. How are your red blood counts?
Has your doctor talked to you about possible treatments?

Hi Jacklyn, Oh, I understand now! I think you’re getting Venectoclax and Vidaza! They weren’t options when I had treatment 6 years ago! Your doctor is right, those two drugs are much different than what you had when you were being treated for breast cancer years ago. V & V are less intensive and much better tolerated.

I’m, sorry that I didn’t realize V&V are now referred to as 7+3 as well. Back when I had my treatment 7+3 was cytarabine and idarubicine and it was a week as an inpatient.

This will be a much different for you than with your earlier treatments for BC. The side effects shouldn’t be so dramatic. I hope that you’ll begin feeling some positive improvements after you start treatment. I felt so horrible before my diagnosis that when I began chemo, within 2 days I was starting to feel better. My chronic fever of 102 that I had for several weeks finally broke too.
As you’ve read in the forum with other members taking these meds, this new regimen for AML used in we older patients, has been a God-send where otherwise treatments were harsh and not tolerated well.
I’m can certainly understand the anxiety of all of this! Do you have family or friends nearby to talk to and help out if you need them?

Hi! I’m Allison! Was just diagnosed on Monday with MDS Single Lineage Dysplasia. I have the TET2 mutation. Mainly my platelets are the problem but I’ve never had any problems on my bloodwork with my platelets. I was diagnosed with Lupus in 2006 after my second daughter. I’ve had low WBC ever since. I average WBC of 1.2 all the time. I am so tired. I have low neutrophils. Neutropenia…leukopenea….low thyroid.. I’m a walking Auto immune person. I have bruised arms and legs. I can’t wear shorts because my legs look horrible. I’m
Nauseous a lot. I’m sick and tired of being sick and tired. 🥺

No I am not going in the hospital but I have to go every day. She said it was like an injection. And I also get a pill to take orally. And I go home. She didn’t. Mention an iv. I will know more Thursday. She said I have to go to the hospital for the injection and I can’t give it to myself because it’s chemo. are there any questions you can think of I can ask. I also have suffered for years ftom depression and anxiety which they got under control with Effexor years ago. But after my fall and fracturing my Ll ad L5. Vertebrae which landed me 3 times in the Er put on morphine and other meds my antidepressant stopped working. Now I feel
It is working and she added clonazapan to it and it was really good for awhile. I got back out there with my friends but after this news it is still helping but i
Do get waves of anxiety at times which scares me and I am starting not to want to go out as much. I also have a lot a fatigue. I am more afraid of getting more anxious than the treatments. If that makes any sense.

Aw golly, Jacklyn, I know you’re feeling pretty scared right now about going through treatments for AML. It’s not a disease to be taken lightly but it’s important to get the treatments started! There are different approaches to treatment depending on each patient’s condition

You’re having a 7+3 cocktail, as my chemo nurses joked. I wish! I’ve had better Happy Hours. ☺️
Basically, 7+3 means, seven days with one drug along with the addition of another for three days, running concurrently.
Those infusions are generally given while in-patient for a week’s stay in the hospital. At least in my experience and from what other friends have shared with me. It can be a very effective treatment for lowering the blast counts associated with AML.
This first round is called Induction. It is usually followed by a Consolidation round 28 days later, which is just one drug for 6 days. The treatments can, as your doctor mentioned, cause all of your blood numbers to drop about a week or so after the last infusion. The chemo targets rapidly dividing cells, like cancer cells…in your case the blasts. However it’s not discriminatory and will also destroy other fast growing cells such as hair, mucosal tissue and blood cells.
So don’t be caught off-guard if you start feeling extremely tired during that week. Within a week or so, your blood cells should start to regenerate and you’ll start feeling stronger again. But that week where you are neutropenic you’ll want to rest most of the time.

Because your cell counts will be low, there is more of a risk for infections. So make sure to check your temperature daily. If it is ever elevated to 100.4 or higher please call your oncologist right away to get directions. With neutropenia, there aren’t the normal symptoms of an infection present, just the elevated temp. So you don’t want to let that go without talking to your doctor.

Did your doctor mention being admitted to the hospital for a week? If so:
Things I took along were an ipad, phone, chargers, small extension cord to keep those working, little bag of items for amusement. In my case it was a small tin of water colors, paper, brushes, books, crossword puzzle book, etc. Take some pajamas, socks, underwear and personal items. But also, take comfy clothing! You’ll want to dress every day. It’s so much better than wearing a hospital gown. They make you feel like you’re an invalid! I wore yoga pants and t-shirts with a nice hoody, or over shirt. Oh, I also took my own pillow and 2 pretty pillow cases! ☺️

I’d also suggest getting out in the hall, walking every day! The infusions can take a while. The IV’s are portable so get out and push that pole around while walking. It makes the time go faster. I walked 4 miles every day in the hospital. Hahaha with a squeaky wheel on my IV cart! The nurses would laugh when I walked by…but then ‘gifted’ me with a new cart that didn’t make any noise! 😅
Anyway, you’re going to get through this!! I’m here for you if you need moral support, Jackie! Sending a hug!