High risk mds , chemo injections, manicure

[bakbak1]

I am 70 years old. A year and a half ago, I was diagnosed at lower risk. I took Procrit and G-CSF injections for over a year ago . They stopped working and I started vidaza in June 2023. (I had become transfusion dependent—1 or 2 bags per week, two weeks). I now have unspecified high risk MDS. He believes I am close to transformation but he says it’s likely I won’t qualify for blood marrow transfer due to co-issues). My platelets are normal. My issues are RBC’s and WBC’S. I’m also neutropenic .6 to 1.6 wbc count.

My heme onc told me a few days ago that my most likely course of treatment is vidaza for the rest of my life, which he believes is about a year to 3 years, unless my body rejects the treatment. Then, he said, “…things will get very ugly” and he needs me to “…understand that I have a limited amount of time on this earth and need to decide what’s most important to me.

He okayed playing with grand children (all under 5) who live with their parents in our house. He said no to public pools and hot tubs. He said to ask chemo nurses if I had more questions about what to do or not do. The typical response is “I’ll look into that for you) and/or “just mask up, carry sanitizer wipes, avoid crowds, and and use your common sense—don’t be stupid…uhhhh…
Is there a list of activities to avoid
Ie movies, mani petty, massage, facial, fly to visit family members after not visiting since my original diagnosis), church, visits with family and friends

[Ashley Moncrief]

Thanks so much for writing in!

This is a really hard place. There is no set list of things to avoid.

What I tell people is that quantity of life is important, but so is quality. You cannot avoid everything you love, but you also don’t need to take unnecessary risks. If there is something you really want to do, do it safely. If you are taking Vidaza, your counts will be lower in the middle of the treatment cycle; this is called your nadir. During this period, be a little more cautious about what activities you choose to do as you will be at a higher risk of infection. You can always wait until your counts start coming back up (typically right before you are due for the next treatment cycle) to do things that involve crowds or infection risk.

If you do go to things like restaurants, movies, church, etc., I too tell people to be smart about it.
– Maybe avoid going at the busiest time of the day.
– Wear a mask.
– Avoid close personal contact like hugs with people who are not in your inner circle.
– Avoid buffet style restaurants.
– Pay attention to the Covid and flu numbers so that you can plan things when the risk is lower.
– If you are having people over, there is nothing wrong with asking them to use hand sanitizer at the door and wear a mask.
– If you are getting a manicure, make sure they use new equipment with each client.
– Avoid going around people who have been recently ill, even if it was just a cold.

I wish I had a better answer. If you are planning a big trip, I would definitely talk to your doctor first as he should be able to help you determine when the best time would be based on your treatment schedule.

I hope this helps!

[Author]

Posts