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Flying Post NHL Treatment

horses and hounds
Posts: 1
Joined: Oct 2019

Hello,

I‘m a newbie here but and I can’t seem to get any discernible answers from my medical team.

I completed DA EPOCH-R chemo in 2016 but continue to be monitored with PET scans, bloodwork, etc...I handled the treatment well, but now feel like I’m battling fatigue like I’ve never had in my life. It is so frustrating!

Often times I need to travel and by the time I get home, I’m down for about 2 days. I‘m a business owner and this is not acceptable to me, yet I also feel powerless over it. Just recently I flew from Boston to Minneapolis for a meeting, then to Salt Lake, then to Lake Tahoe for a 4 day meeting, then to Phoenix, then back to Boston. I arrived home on a Wednesday and was out for the count both Thursday and Friday.  This had never happened to me pre-cancer.

I can‘t seem to find much regarding flying a couple of years after treatment, so I don’t know if this is normal or if something else is going on. Oh, during my treatment I DID have a PE in my right lung, so I try to fly business class or first class when I can because being squashed in a cattle car doesn’t work for me...add to the fact that about a year ago I tore my left ACL, had surgery, and it only adds to my discomfort.

Has anyone else experienced this? 

Any feedback would be greatly appreciated, thank you!

 

PBL
Posts: 184
Joined: Jul 2016

Hello Horses and Hounds,

...and, first things first, congratulations on achieving remission. I had 6 R-CHOP in 2016, followed by two years of Rituximab maintenance, and like you, am still being monitored twice a year with CT-scans and MRIs. In my experience, you will not likely get any precise answers regarding the duration or degree of fatigue following treatment. My hematologist just answered my question (last April) regarding this issue with a shrug and "it can go on for years". 

All I can tell you is that I would not be able to do all the traveling you are doing...

You may just have to accept that this fatigue you are experiencing is the price to pay for the additional time afforded to you by the treatment you have received.

Kind regards,

PBL

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

I think PBL described the situation perfectly.   

When I was in treatment, there were about 40 infusion stations at the site I went to, and I saw and met all sorts of people.   The mighty and the meek, all reduced to equality by cancer.

There was one woman I especially recall.  She was relatively young, maybe 40.  Stage IV breast cancer.  She was what I described in my own mind as a "power chick" (I mean this in the most positive way, as a modern women of high status and endergy).  Always on the laptop or the cell phone, always busy, always cutting a deal, solving the world's problems.  Always watching her watch, in a rush.  She "didn't have time" for chemo or treatment, much less side-effects.   I don't know what became of her; I hope she got well.

Another man there had Stage IV leukemia.  He was a very senior executive in an international corporation.   He was obviously not well, and did nothing during his infusion time.  I did not 'know' him, and only discovered who he was when, a few months later, I saw his obituary in the local paper.   Of the people who I did know at infusion, almost all died, although most did not have lymphoma or blood cancers.  A friend from my job was there: he had Mantle Cell Lymphoma (MCL).  He died before his first-line treatments even got started good.  My best friend was Deborah; I loved her and her husband like they were my own siblings. She had stage 4 colorectal, about 40 years old also.    I watched her go down.  Near the end, she was in a sort of stupor one day, and looked at me, and said, "I don't think I'm about to die. Do you think so ?  I think a person would know."  I replied,  "Yes, it seems to me that a person would know."  I had never felt so profoundly close to a person in my life as I did at that moment.  Knowing Deborah was a gift I can never repay.   She had a two year old at home.  She died that week.

Most people start treatment with a gung-ho attitude of "I'm gonna beat this thing !"   Then, reality arrives.  Spirit and determnation are always good things and important, but not determanitive.  Six months of R-ABVD kicked my a--, and I am not over it now, ten years later.  I am still weak and fatigued, still have serious neuropathy, still absent-minded.   I am thankful to be here, but know that I will never be the same.  Many others are similiar, and many besides them have died.

People may not 'have time' for what cancer deals them, but it will always have time for us.  With effort and the best doctors, many do well and have long lives before them

 

 

lindary's picture
lindary
Posts: 657
Joined: Mar 2015

That is me. I have dealt with low iron since about 14. So being tired during R-Chop for lymphoma didn't worry me. My problem was I did take it easy. Once it was all done and I was in remission I realized I shouldn't have been quite so relaxed. Just to go up our stairs was a chore. My last chemo was Oct 2015 and I have to really push myself to be active almost every day. I know some of it is age but give me a choice of going for a walk for an hour or curled up in a chair reading a book for that same time, you will find me in the chair. 

Reading all what you do I find amazing. You may want to slow down a bit and let you body catch up. Have you thought of doing some meetings via video conference. It's not like having everyone in the same room but it does work for smaller meeetings. Experiment and see if you can figure out what your body will let you do without crashing for 2 days. Think of it this way, you travel and do a bunch of meetings and then crash for 2 days. Two days of doing nothing. Instead you try to cut back 2 days of travel and video conference. Now you gto some work done and did not lose 2 days.   Good luck

Evarista
Posts: 265
Joined: May 2017

Hi H & H, and welcome.

I* find that managing my fatigue is an absolutely central component in maintaing my current quality of life. And key to that is striking an effective balance between "doing" and "not doing". Adhering to a reasonably strict schedule of sleeping, eating, exercising, relaxing is critical, at least for me.

Like Lindary, I wonder if your difficulty is not so much the flying per se, but the continuous stress and disruption that that kind of travel entails:  getting to airports, getting through airports, standing in lines, cramped quarters for X numbers of hours, getting out of airports, sleeping in strange places, then needing to be "on" for whatever the business involves. And OMG:  4 timezones in one week!  Plus going from sea level to ~6,000 ft above in the same time frame? It really is no wonder that you are fatigued, and seriously so.

But what to do about it?  Adjust, adjust, adjust.  Travel when you must, try to keep to your "home" schedule, try to sleep in your own bed at least on the weekends.  You ask if anyone has else experienced this.  My answer is absolutely yes. When it happens (it happens less and less), I have to work very hard to rise above, especially because extreme fatigue is not something that just goes away with sleep.  It takes more and recognizing that aspect of fatigue (as opposed to "tried") is super-important, IMHO anyway.  Wishing you the best with it and hopefully it will continue to lessen for you as it has with many of us.

Added note:  low Hb (hemoglobin) could affect how you feel when flying and when at higher elevations (Lake Tahoe, SLC).  If you haven't had that checked recently, something to consider.

*Me:  now 70 yo. DLBCL dx Jan, 2017.  6 rounds of DA-R-EPOCH + 4 spinal injections of methotrexate.  No rituxan maintenance.  NED since completing treatment in May, 2017. Still go through major bouts of fatigue but find that they are increasingly infrequent.  My fatigue is always accompanied by exacerbation of my peripheral neuropathy, so I use the latter as an early warning signal and take precautions if I notice increased pain, numbness in my feet.  

Almost70now's picture
Almost70now
Posts: 29
Joined: May 2019

Oh my goodness...I have not regained my strength and deal with daily fatigue since 2010 when I did my first rounds of chemo..CVP-R...6 rounds every 21 days, and then 2 years of Rituxan maintenance. Also radiation in my right eye when the cancer returned 3 years out and again with Rituxan when it returned again 18 months later. My doctor said it's my new normal and I have to just learn how to manage the fatigue with my daily living. It's the hardest thing for me because I had always been so active and now muct do everything in small increments. I'm 69 now and of course age has played a part in this, but I truely believe the chemo treatments and many doses of Rituxan just knocked me down to wher I'm at now. But....going slow and taking things easy is doable and I'm learning to deal with it. Read more now and watch a lot of TV so it's all good. We must learn to adapt after the poison has been administered. Beats the alternative! Have a great weekend everyone and enjoy the crisp Fall weather. Much love, Sue

Follicular NHL-stage 3-grade2-type A- diagnosed June 2010...still here!

 

 

 

 

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