Flying Post NHL Treatment

PBL said:

Cost of living...

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

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

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.