Living with MDS (Myelodyplastic Syndromes)

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?

Yes next week dheceill meet with the tumor board on Wednesday. I don’t know if that involves any AML specialists. You are right about the loratadine it is helping a lot and maybe the treatment ail help like you say. Can you live a few more years if the treatment works. This is what my oncologist told me.

Hi, some positive messages have raised my spirits. My mum who is 72, has just been diagnosed with MDS II , with alterations in NPM 1, the doctors are planning chemio for her. And I doubt, are plaquets and neutropenia low in your case? How is that some of you are just on active surveillance without any active treatment on the go? Is that an option?

Hi Jacklyn. If you’re already on antidepressants and clonazepam make sure your doctor is aware before you start Atarax or check with your pharmacist for drug interactions. For now, if the itching is responding to the Loratadine, maybe stick with that for a while. You may find that when you start treatments for AML that the itching may go away.

Do you have an upcoming consultation with your oncologist to discuss treatments for your AML?

I mean they sent my biopsy to two of the hospitals.

I just did a bone marrow biopsy. They sent my results to two of the top hospitals in Montreal. This is where it was confirmed AML. The last bone marrow biopsy last year was it was CMMLborderline AML. I still have itching not as bad but my fictitious did mention atarax so I might try it. I am on antidepressants and clonazapan but they don’t make me tired. Just not sure if atarax would interact with clonazapan. I guess they would know. I would take it at night.

Hi @jacklyn, Well shucks, those weren’t the results you were hoping for with the blood work. It seems your CMML has progressed to AML. Whether or not your doctor will keep you on hydroxy will depend on what type of AML you have.

Hydroxy is generally not a first line treatment of AML. And since it didn’t appear to help keep your CMML from progressing to AML, they may need to move you forward to another type of treatment.

Itching with my AML, used to drive me to distraction…so I’m glad you’re getting relief with the Loratadine! Atarax is another type of antihistamine which can help with the itching. It can provide a little sedative effect which also reduces anxiety. But it can make you a little drowsy, so if the Loratadine is working then stick with that for now.

I know this news can leave you a little unsettled as to what to expect. If your doctor recommends chemo, just keep in mind you’ve already been on a form of chemotherapy with the hydroxyurea. The term can be intimidating and the bejeebers out of people. But chemo can be a life saver! When you find out more, we’ll work through this together, ok?

Did your doctor order any further testing such as a bone marrow biopsy? Do you remember if your blood results mentioned the term, blasts?

Well I got my results back from my blood test and the hydroxyurea brought my white cells down my platelets are good and my red cell count is low I guess 88 but the results from my bone marrow biopsy came back that it had progressed fyy to I’m CmmL to AML. So my oncologist is meeting with the tumor board next week to discuss my treatment. She thinks I need to do chemo. The itching isn’t bad now since I have been taking loratadine. She talked about a drug called atarax if I still get itchy. I don’t know what yo think. I know AML is aggressive and whether the chemo will work. I feel much better on the hydroxy so I wonder why she just doesn’t leave me on that. Intake 2 500mg Monday yo Friday and 1 500mg Saturday and Sunday.