Living with MDS (Myelodyplastic Syndromes)

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!

I am supposed to be starting the 7 3 chemo infusions in two weeks. I have to do a special blood test this week and see my oncologist. She said it’s not that bad. It’s not like the chemo I did for breast cancer 18 years ago. Sometimes it can make your counts go down at first and you might need blood transfusions. But the aim is to put the blasts in my marrow into remission even though my counts right now are good on the hydroxy. I am scared about all of this. Is there anyone here at 77 who has had positive results with this treatment. She said it’s not that might take 2 cycles. She will do a bone marrow after my first treatment to see how it worked.

Hi Jacklyn. When dealing with my AML adventure 6 years ago I didn’t know a soul who was familiar with the treatment or outcome. I had great medical advice from doctors and my chemo nurses, but it’s not like being able to speak with someone who has actually walked the walk.
It’s so much easier to walk along an unfamiliar path if we have someone to help navigate or talk with as we face obstacles. So that’s why I’m here! I want others to know there is hope and will do my best to help make the journey easier. ☺️ I’m here for you anytime!

You have a great attitude with knowing it’s important to keep busy to help avoid anxiety and stress. Sounds like you have a lot of lively activity around you all the time and an awesome live-in support system. Kids will help keep you focused on what’s important, right? ☺️

I am blessed God put you in my life. You don’t know how much it means to me to hear there are people doing well. You are also right about distracting myself. I worry more about my mental health and staying stable and free from anxiety. I lined up a few projects that
need to be done around the house. I live with my son and his 3 kids. Yep boys 5 and 6 and my granddaughter who graduated this year 16 and I was so happy I could attend. It so comforting to know I can reach out to you Lori. I feel now I just might be one of the lucky ones. I will just do my best and trust God. He got me this far.

Hi Jacklyn, Basically, at least from my personal experience, a tumor board is a group of doctors from different disciplines, such as physicians, surgeons, hematologists, oncologists, radiation therapists, etc., who meet to present and discuss cancer cases and potential treatment options. (Not saying all of those will be on your tumor board) So I would expect that if they’re discussing your case there will be an AML specialist onboard.

To answer your question, yes indeed, it may be possible to live many more years with AML. Of course, it can depend on the type of AML. From what your doctor said, it sounds as though they feel you would have a favorable response to the treatment.
Newer drugs are available for those of us who are a little older and aren’t able to tolerate aggressive treatments. Some of these weren’t options for me 6 years ago, so there’s been a very positive breakthrough in medications. There are several members in Connect who have AML and in our age group who are benefiting from these meds.

Two discussions that popped to mind are these, with member @lindagi who was diagnosed with AML a few years ago. Here is the beginning of her journey…

~AML, age 78, taking Decetabine/ Venetoclax, no transplant
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
And her positive update!
~AML successful treatment
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
Waiting for answers is so stressful, I know! You feel like you’re stuck, spinning your wheels and not able to move forward. This is a good time to take a deep breath, then slowly exhale and focus on activities which bring you a sense of calming. Distraction is a wonderful tool to help us process emotions and to work through challenging times…both mentally and physically. I tend to retreat to my desk to paint or sketch. It’s very relaxing and I forget about things that are bothering me for a while. They’re still ruminating in the back of my mind, but for couple minutes or hours, I’m not focusing on a current crises. Does that make sense?