Newly diagnosed MDS-IB2 and vidaza

Welcome to Connect, @rjperk633 This is a tough decision for you and your mom. It sounds as though, with her new diagnosis of MDS, she is having second thoughts about starting the Vidaza treatments. And it’s understandable if she isn’t having any obvious symptoms of this progressive blood disorder. Eventually, if there is no treatment, the blast cells (immature white blood cells) will keep proliferating until they crowd out her healthy blood cells.
As that happens, your mom will start feeling some symptoms of fatigue, maybe shortness of breath, bruising, excess bleeding from cuts, nose bleeds, etc. I had a blood cancer similar to this and quite frankly, I was very near death and it would have been a peaceful end as I would have basically fallen to sleep.
With treatment such as Vidaza, the cancer cells (blasts) will be destroyed. But it’s not discriminatory and will also kill off other fast growing cells such as all blood cells, hair, nails, mucosal cells in mouth and gut, which can cause mouth sores and intestinal issues like diarrhea and nausea. With the lowering of neutrophils, the potential for infections and illness are seriously elevated. About mid-month between chemo cycles, the blood numbers start to rise again and your mom should feel better until the next round. Then it repeats. It should bring down the blast cells. It is not a cure but can help gain remission.
So at 87, those are options your mom has to weigh. As we age, our bodies become less tolerant and unable to process some of the drugs.

There are several discussions in the forum with our members who have MDS…some on meds like Vidaza or other’s requiring other options.
~Living with MDS
https://connect.mayoclinic.org/discussion/living-with-mds/
~How long can we be on Vidaza?
https://connect.mayoclinic.org/discussion/how-long-can-we-be-on-vidaza/
More discussions can be found by typing in MDS or Vidaza (Azacitidine) in the search bar above. Feel free to pop into any conversations. We’re all here to offer support. If you have any questions don’t hesitate to ask!
How is your mom’s health otherwise? Does she have any other underlying illnesses?

Mom has well controlled hypertension (but recently her meds were doubled). I have read that increased hypertension often accompanies MDS.

Mom is also a well-controlled diabetic.

She’s tough but finicky about the weirdest things… doesn’t mind that she will have many bloodtests thru this progress but is dreading these injections….

She doesn’t like to take oral medications so if she may have to add something oral to fight a side effect of Vidaza, she will quickly want to drop the Vidaza.

She also doesn’t want to lose her hair and her doctor didn’t really address her comment. She has had lots of pre-cancerous skin frozen on her arms and face over the years and as she ages these spots are more noticeable and really pink… hates this as well… Doc did say that her spots will likely be even more pronounced.

So Vidaza basically follows a pattern of taking injections, feel poorly for a while and just as you begin to rebound, it’s time for another round….😬😬

If that’s how it’s gonna be, I don’t see her taking more than one or two rounds… I will support her either way, but my wish is for her to make the choices for herself. I have seen the underneath the bus… lol

Your mom sounds like a force, LOL! I chuckled out loud when you said ‘you’ve seen the underneath of the bus’! I’ve been there with my mom!! 😅

Some people don’t have notable side effects from the Vidaza. But fatigue is usually pretty common with any type of chemo and sometimes nausea. If your mom doesn’t want to take oral medicine there’s a sublingual anti-nausea med called Zofran. It just melts under the tongue and is very small. Not like taking a pill.
It also doesn’t appear that hair loss is a problem for most patients.
Ahh… I don’t know what to tell you. I guess you can encourage her to at least give it a try. But I understand not wanting to be the one to push her into this and then take the heat if her worst fears are realized.

Hopefully you can reach a compromise with her. ☺️ If she has some concerns yet, would she be able to have a with consultation with her oncologist?

I just checked her account and she is scheduled for first injection on Tuesday…. I will make sure she leaves her appt with a plan in place.

Her doctor is a bit too quiet for my liking… he’s not my choice. I’ve only heard good things about him but he’s not my style.
I guess she doesn’t ask too much cuz she knows I will do the investigating…. So that’s on me I guess….

Thanks for your help…

So it appears that what we thought to be her first treatment, was actually and education and another meeting with the doctor…. Definitely understand more today than a week ago… and I’m pretty sure Mom has made the decision for no treatment…. “Why do all that if there is no cure or remission only possible while I can continue to take treatments??”

Totally think she has made the right decision for herself….

Already talking about making sure legal paperwork is all in order, how she wants her final days and burial arrangements to look like….we are very direct!!

Thanks for your help….

You can’t argue with your mom. ☺️ And at the age of 87, it is her wish to go out on her terms…I respect that! Our family is very pragmatic too so I admire the frankness in which this is all being handled. Your mom will be able to enjoy her time with family and friends without the side effects of chemo.

It will be important as the disease progresses and her immune system wanes, that she avoid potential infection risks. Wearing a mask in public settings such as churches, elevators, doctor’s office, or even cozy settings where there are a lot of relatives or friends talking and laughing can be helpful to avoid airborne illnesses. Mom may feel fine quite some time. But as I mentioned earlier in another post, as the blast cells multiply they will crowd out her healthy cells. So symptoms most common are shortness of breath, bruising, possible prolonged bleeding from a cut, headaches, etc., If she develops a fever of 103.4 that is an immediate call to her oncologist for directions. Usually that can indicate an underlying infection which will require hospitalization with IV antibitoics. (Been there…).
Another thing to consider for the future is talking to her about hospice care when the time comes.
I wish your mom well and if you have any questions don’t hesitate to tag me @loribmt. That way I’ll get a notification and will respond sooner! Does your mom live on her own?

@loribmt

We have small family… she has two surviving siblings… one with dementia and the other living away… just me and my grown kids and their kids… none live locally… sister has no children.
At this point, most friends are deceased.😔

Mom has a very small world, not very social except trips to grocery store, pharmacy and church… so avoiding crowds should not be difficult. (Except for masses… but she does attend early mass, less people and gets there early and sits way up front)
She’s definitely regimented!!

We just finished helping my husband’s brother recover from liver transplant so we have been isolating for a while now… ugh!!

We have already talked about hospice and reminded her that if she wants to plan her own funeral, it has to be before she is with hospice (we learned this with my dad in 2021).

I just scheduled her next appt with oncology for the new year and at this point we just keep kicking the can down the road.

So is there anything I may not understand yet about dangerously low platelets… I understand as this progresses, this may be an option to “boost her up”….. any down side (except for prolonging the inevitable)

I know from experience that this is a difficult period for all of you. Even a family that’s pragmatic about end of life decisions struggles when reality sets in. So you have my empathy for seeing this all unfold. I went through similar with my mom. Even having the discussion about whether she’d like to keep her wedding ring with her for eternity. 😕

While painful for you, your mum, being able to be in charge of her life decisons is giving her the ultimate respect and dignity.
As your mom’s platelet and hemoglobin levels decrease, she may have infusions of both. That’s pretty common to keep her safely active. You’re right, it will ‘boost her up’ for a period of time. Her doctor will monitor the blood work which will let them know when it’s time to infuse. Also, if your mom notices more bruising, nose bleeds, excess bleeding from bumps, cuts or scrapes it would be an indication of possibly needing more platelets.

In the meantime, she has time! Time with you, time to get her ‘affairs in order’, time to share stories of her life. This is a great time to let her reminisce. You can make recordings of some of her life events or write them down. A good time to look through old photo albums and get the names of people you don’t recognize…you have precious time together.

Wishing you and your family a special holiday season. Sending a gentle hug…and please keep in touch. Lori.

I called cancer center today to ask for info about what receiving platelets will do if it’s ever needed…she is saying no to receiving blood products also… I don’t know what I don’t know… she can refuse blood products that they recommend… and if she does refuse when suggested, the progression will be quick…

Will discuss this with her in person…

So another question has popped into my brain…

So Mom has 10% blasts based on bone marrow biopsy….

I understand that her monthly blood tests will be to check for the standard CBC, etc ..

Will blasts show up in these tests? Do blasts eventually show up in this regular bloodwork?? I understand that it’s basically a % of blasts to be called MDS or AML….

Just wondering how one number (marrow) compares to another (bloodwork)

Thanks for any input