New to all this... can we still vacation?

[wilmasdaughter]

My 88 year old mother and I take a trip to see my sisters about 9 hours away every summer; and my brother who lives in another state is meeting us there also. We are due to go next Friday, June 24 (driving). My mother was diagnosed with MDS (refractory cytopenia, IPSS Int.1) about 6 weeks ago; she has had no treatment to date as she still feels "okay." Hematologist told us it was all right for her to take the vacation as long as she felt okay. She is due in for a round of labs this Friday to see if her blood values are still dropping. My questions - AT WHAT POINT WILL THE DOCTOR SAY SHE SHOULDN'T TAKE THIS VACATION?
On May 4, her levels were:
WBC 3.41; RBC 3.22; Hg 10.4; Hct 31.4; Platelets 45; Absolute neutrophils 1.61. They have been steadily falling every 3-4 weeks since mid-February when they first suspected she might have MDS. We go in for labs again this Friday - I am expecting that they've dropped further.
She recently had a bad cold and hematologist gave her Levaquin, which seemed to help. But she is very, very tired. She won't admit it, but I can see it in her eyes and in her actions around her house. I don't want our vacation to stress her system further, but at the same time, she is so looking forward to seeing my siblings (never know, could be the last time). My sisters keep asking me if I think she will be 'okay' for this trip. Due to her age and other health conditions (CHF, interstitial lung disease, HBP) the hematologist is not planning to do much in the way of 'treatment' for her MDS; he said chemo would only make her feel worse and probably not prolong her life. This is all so new to me/us -- what can we expect? How long will it be before she is pretty much housebound? She has always been so active and outdoorsy, and I think this illness is taking its toll on her very quickly.
Thanks for your advice!

[Neil Cuadra]

Jil,

Your mother is lucky to have you looking out for her and learning how best to help her. I'm not surprised that they don't want to use aggressive MDS treatment for an 88-year-old with other health conditions, especially since she hasn't needed transfusions so far.

I hope you can tell what your mother's real preference is about accepting some physical strain to get to see the whole family. Try to encourage her to tell you how she feels day to day, even if she's the type of parent who doesn't like to complain. It's a good sign that the doctor said OK to the trip, especially since doctors can tend to be overly conservative (protecting health status rather than considering the bigger quality of life picture). But it also depends on whether she feels up to it. Her cold was probably harder on her than her depressed blood counts have been.

If the antibiotics are doing their job then it's nice to have the choice of traveling. Chances are that your mother's ability to travel will lessen over time. If the doctor starts recommending against it at some point, chances are you and your mother will agree.

If you take this trip as planned, here is a thread with travel tips, including remembering hydration. A little advance planning can make traveling safer. On a long drive you'll have to be flexible, willing to stop driving and take a break if your mother needs to rest. You're worried that it be the last chance for your mother to see your brothers and sister, but you never know -- part of being an MDS patient is living with a lot of uncertainty. I hope your siblings plan to make trips now and then to visit her too. It's a lot easier to receive visitors than to travel.

[wilmasdaughter]

Great tips Neil! Thank you very much!

[cheri]

Hi
I looked at the link on travel tips and surprisingly, it was the one I wrote, before my road trip to Florida this past winter! (ironically, the time I spent with my brother, thisclose to the Mayo clinic, was the ONE time I didn't need a transfusion!!!) Seemed like a great plan, but didn't go that way in actuality. My insurance company only covers the my tri state area, so I was forced to rethink my plans. Only ER visits would be covered, with a $125 copay....(If I were staying at a place for an extended period of time, and I had the right insurance, my first plan would have worked)
.
What actually happened was I would get my blood tested regularly at Laborps along the way, and when my platelets dropped to 20k, I began looking for the nearest ER....where I would check in, provide all my information, and get platelets transfused. It was inconvenient, and sometimes took up to 12 hours, but it kept me going. And it was a great time with lots of fun memories, and having moments of relief from the angst of this disease is a necessary thing......good soul food is important!
That being said, your Mom is 88 and if she feels up to the drive, why not? She can rest the whole time driving~what will the scene be like where you are going? I would just have a plan "B" --if she should suddenly feel bad, can you get home reasonably quickly? Or meet your siblings halfway? Do you have time constraints, as when you need to be back for work and such?
I think your upcoming tests may ultimately provide the answer you are looking for, or, perhaps a pre trip transfusion of platelets would buy you some extra going away time....Good luck and happy travels!
ps. My mom just turned 88 on Sunday...God Bless our little old Mommas!

[Joan]

Jill;

I hope your vacation plans can take place. My husband took a tent camping trip for a week about 3 months after his MDS diagnosis in 2006. One day he laid on the cot all day but most days he managed to do some things. He was younger, 75.

Has doctor said anything about EPO such as Aranesp shots? Don has never had chemo but he gets Aranesp, now up to 300 mg every two weeks and it keeps his hgb in the 9 to 10 range. He hasn't had to have a transfusion since 2007. We feel very, very good about that. He does get tired easily but he has learned to adjust to that.

Good luck.

[wilmasdaughter]

Vacation went well & mom did okay. She was tired but refused to rest. My brother thought she was "running on adrenaline."

When we came back home she had another appt with hematologist and her hemoglobin was way down (9.8; normal is 12.0-16.0). They started her on Aranesp every 3 weeks. So far, no side effects.

Then we got a call from the hematologist that her B12 levels were way down (158; normal range is 211-911) so they started her on daily B12 injections for a week, followed by weekly injections. She is very tired, complains that all she does is sleep. I try to tell her that it's part of her disease, but she is so used to being active that I know it bothers her.

Any comments/thoughts on Aranesp? Apparently it's a chemo-type drug that is used to bring up the hemoglobin that doesn't actually TREAT the MDS -- just the symptoms. Has anyone else had any experiences with it? She will have another injection next Friday.

[bebop]

arenesp actually is a blood builder type thing. my dad was on it for over a year. it isn't a chemo though. do a google search. it will pull up quite a bit on it.