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Fatigue

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

I am 70 years old and I was diagnosed with DLBCNHL back in June 2018.  Started 6 rounds of RCHOP and 15 doses of Radiation finishing up by Thanksgiving.  I think I was fairly lucky in that I had minimal side effects with just hair loss, tiredness and some Neuropathy.  It took awhile to be sure treatment was successful (because of suspicious shadows and a serious car accident) but by October 2019 I was finally declared NED.  Unfortunately I don't seem to be able to shake the fatigue and poor balance.  It is really debilitating and seems to come with good days and bad days.  I understand that it's relatively common to feel this way but it continues to worry me....will it ever end? 

po18guy
Posts: 1044
Joined: Nov 2011

My fatigue was not so bad after 7 years of treatment, but a stem cell transplant and the drugs necessary to control GvHD have me hitting the couch. Cannot stay awake some days. Frustrating, but I remember that I have to be alive to have complaints. I am close to 70 and we are also undergoing the aging process while all of this is occurring. To bad age cannot be put on hold...

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

Are you on Rituxan maintenance?

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

No, only Tylenol for arthritis and Tizanidine for muscle spasms.  I tend to have low blood psi and I don't hydrate enough which doesn't help the situation.  I was forced to retire from a job I enjoyed because of the cancer.  Before I was healthy and fit but started feeling run down maybe a year before I was diagnosed...thought it was job burnout tons of coffee couldn't keep me going finally a MRI for back pain revealed the cancer in my abdomen around my left kidney. I can probably throw in a little depression from hanging around the house too tired to do much.  

I try walking and doing more involved home projects which challenges me and I have been making gains but one good day seems to equal 2 or 3 poor days.

po18guy
Posts: 1044
Joined: Nov 2011

 The diagnosis itself, the forced retirement, the traffic accident and any other unexpected changes have all added to your psychological burden. All were unexpected, unpleasant and impelled life changes. The rads added to the treatment regimen increased your total physical burden, and all has taken its toll. Your marrow has taken a beating with R-CHOP and will probably require a protracted time to recover - it may never recover fully. As well, the rituxan will probably leave you B-Lymphocyte depleted post-treatment. How are your blood numbers? Wondering here about hemoglobin and hematocrit, which reflect your marrow's production of red cells and the general health of those red cells. Being borderline anemic would certainly contribute to your fatigue.

I would make a follow up appointment with doctor to address your specific compliaints, as the most common causes are fairly easily detectable.

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

We have different forms of lymphoma but oddly mine too was also discovered in an MRI for back pain. I asked about Rituxan because it is often given with IV benadryl which can cause some of the symptoms you mentioned. It gave me really bad restless leg syndrome. I have had over 40 R infusions and finally had to stop it because of chronic infections and leg pains. Honestly I think it will be some time before your symptoms caused by the chemo are gone. I had an induction therapy 8 years ago and then a relapse in late 2017. My last chemo was July 2018 and my last R was June 2019. I still suffer chronic fatigue, leg pains and muscle aches. One thing that I found that helped me with energy was vitamin B12 megadose (don't worry you cannot overdose B12) along with Folate (NOT folic acid- they are not the same thing despite what you may be told), but go easy on the folate. This was recommended by a doctor. These pills raised my red count and hemoglobin significantly resulting in more energy. I now take much smaller dose and my anemia is gone. Another symptom of my last round of chemo (Fludara/Cytoxin) is neuropathy in my toes. I always feel it when I first lay down at night and then off and on during the day.  It is improving and is no longer constant but is now chronic. Another thing that helps me is the occasional 6-day taper dose of prednisolone. It helps a lot with the arthritis and leg pains and also with my psoriasis. It seems to help for about a month. 

Don't overdo it physically. I am convinced my relapse was caused by overexertion during a hunting trip to Alaaska in 2017. Be active and do all you can comfortably but don't overexert. I had finished induction therapy and 2 1/2 years of R and lymphoma was fading into my memory as something I used to have. A ten day wilderness camping trip with 57 miles of hiking over 8 days depleted me. The flight home was nothing short of miserable. 1 1/2 months later I was diagnosed in relapse. I simply over did it. Don't make a similar mistake. It can kill you.Exercise yes, overexertion no.

Best of luck and remember these are my non-professional opinions. I am not a doctor. I hope it helps a bit.

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

Folic Acid is the synthetic form of  folate (vitamin B9). It is designed to manufacture cheaply and have a long shelf life. Folate is the bio available form of B9 which is found in food. The body converts Folic Acid into folate. The issue is that our bodies can only convert a very small amount of folic acid to folate. If you use more than the amount that you can convert, folic acid can build up in your bloodstream and cause problems. That is why folic acid comes in such small doses. Folate is already in bio available form and excess is expelled readily in urine. This is shown by actual research and trials and is not pop science. As for B12, it is not available in fruit or vegetables, only from meat, fish, dairy etc. B12 is water soluble and if you take too much it is immediately expelled as yellow urine and considered harmless. I do not generally take supplements but this worked for my anemia - at least it seemed to. It seems logical because our bodies use B12 and B9 in the generation of red blood cells. This info was given to me by a well know surgeon who recommends it to his patients who have lost blood. I am not a doctor so take this and all info seen on this site and use it with great caution. B12 is readily available but folate can be hard to find. Try Amazon or a health food store. Don't let some clerk tell you it is the same as folic acid. It definitely is not.

https://chriskresser.com/folate-vs-folic-acid/

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

Looking back on older blood work (6 months and more) I see a pattern of low WBC, RBC, Hemoglobin and Platelets. I don't have the latest (Nov.) but will get it tomorrow but I believe counts are closer to normal as I was told.  I'm due for new blood work and PET scan in 6 weeks.  I know I have been remiss in taking care of myself (exercise, hydration) and will make greater effort to be more diligent.  I do take 500mg of B12 so I'll increase that and try to find Folate and do that.

I do understand that those here are not doctors but the value of personal experience certainly helps.

po18guy
Posts: 1044
Joined: Nov 2011

Due to chronic kidney disease, I am supposed to hydrate like crazy. Contrast that with BPE and thickened bladder walls and the message is just the opposite! Still, running to the bathroom is easier than running toward a kidney transplant. Since I am now also diabetic, I mix up several bottles of sugar-free drink mixes (Hawaiian Punch, Wylers, etc.) daily and take my plethora of prescriptions with them.

The low reds and hemoglobin are definitely a contributing factor to your fatigue. So, you are well advised to hydrate as if your life depended on it - it does, acutally, and ask doctor about ferritin level and other blood factors which contribute to anemia. It's all fixable, if not exactly convenient. Consider: 30 years ago or so, they could not have saved you. So, a little extra maintenance is the "cost of living" as I put it.

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

Was feeling particularly bad yesterday so I called my oncologist's office and they had me come in and do my blood work just to check.  Everything was good and counts are climbing and almost normal.  Gave me some relief that I wasn't ignoring an encroaching problem and most likely just have to focus on fatigue being a side effect of treatment. Also have appointment with PA next week.  

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

It will get better!!

po18guy
Posts: 1044
Joined: Nov 2011

If we lament the fact that treatment is essentially an accelerated aging process, the alternative is the cancer itself, which is an accelerated dying process. Opinions vary, but for various reasons, I accept the aging process.

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

"Do not go gentle into that good night

rage, rage against the dying of the light" .....at least for now. 

Evarista
Posts: 274
Joined: May 2017

At least that's how I approach it.  Slow and steady is the key, at least for me (= also 70; DLBCL Jan. 2017; 6 rounds of R-EPOCH + 4 intrathecal methotrexate injections). Ended my treatment 2.5 years ago just shy of bedridden and now find that I participate in my world as almost "normal".  Not quite, but almost.  I describe myself as being on an ever-shallower slope of recovery. Initially, I measured improvement in days & weeks, then months.  Now it's more like "I am better now than I was 3 months ago".  I still feel like I'm progressing, but ever more gradually.

That said, it's definitely two steps forward, one step back. And there are setbacks:  a winter cold, a case of shingles, a must-attend out-of-town family event will each bring some degree of set-back. What I've found to be key is to not overdo it and thereby tip myself into a fatigue state.  It's just counter-productive. Better to maintain a steady pace of exercise and activity until comfortable at a particular level. Then try adding a little bit. Stick with that until comfortable before adding more. Etc.

You mention some depression.  This is something that I have noticed for myself:  fatigue, neuropathy, and despair go together.  So I pay a great deal of attention to not letting myself get fatigued. Recognizing this convergence has been incredibly helpful and I continue to work hard at making sure that I do not push myself in ways that make things worse.

So, keep on keeping on, right?  Best of luck going forward.

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

A wise approach.  I do need to be more consious of triggers and situations that might bring on more fatigue and learn how to avoid them or at least reduce their effect.  It's taking time to realize that this is my new life and at this pace it'll be years before reaching the "new" normal.

po18guy
Posts: 1044
Joined: Nov 2011

I now move so slowly that I am being considered for clay-mation short subjects. Frown

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

GWfl  I was 64 when i was diagnosed, that was 6 years ago. I was lucky in that I was able to work remotely during treatment and go into work when I could. I will be 70 later this year and still work. Guess it is my addiction. The fatigue is always there. Some days not so bad. Others I wonder why I got out of bed. I am not a fitness nut but I do stretching 2 - 3 times a week. Get  a massage at least once a month. I had been going to the gym twice w eek but that stopped when things at work changed. Need to get back to the gym on a regular basis. 

Just keep putting one foot in front of the other.

 

Regarding tortises. Recently read about the island that Napoleon was sent to and, eventually, died, St Helena.  While there someone brought him a young tortise. The tortise is still alive and is almost 200 years old. 

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

But where is Napolean? He carved his initials in that poor things back!

Lazarus86's picture
Lazarus86
Posts: 1
Joined: Jan 2020

Im not sure. It may never end. I am struggling as well with chronic fatigue. I comment because I too am curious if the fatigue will ever end. I'm 4 years cancer free still stuggling with multiple issues. Good luck

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

PA appointment was good, she added more blood work that came back fine.  Recommended appointment with my GP but that's still 3 weeks out. Had some very good days after but then crashed with fatigue and heavy windedness.  Thought about ER but called triage nurse at cancer center instead and they had me come in for an evaluation with another blood workup which my oncologist said was still good and that fatigue is from the RCHOP and radiation.  Decided on a hydraytion IV and a chaser of steriods.  Feeling very good today and starting new plan to better hydrate myself.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

I will comment only generally to the contents of this thread.   

Before diagnosis with HL Stage 3 at the age of 53, I did not know myself to be sick, but was so tired that after a ten-hour sleep, I would get to work at about 7:00 AM, having already consumed about 30 ounces of strong coffee.  I would get in a company car and drive maybe 30 minutes, and get so exhausted I would at times have to pull over and nap for 30 minutes to drive safely to a gas station, where I would then consume a few more large cups of coffee to keep going.

During chemo, I would sleep at least 15 hours per day, often 17-20 hours, but remained exhausted.   Since chemo ended 10 years ago, I have required 12 or more hours per night to function at all.  My blood panels have remained normal, but during these 10 years, I was for a period profounly anemic (went on IV iron for tweo weeks) and was checked by a pulmonologist, who discovered numerous lung disorders, including 20% lung mass lost to fibrosis, asthma, and other goodies.   I have been to my GPs office at times with blood oxygenization levels as low as 87%, but in general it stays around 97%.   I have been told by both my oncologist and the pulmonologist at times that they could not believe that I walked in the door to their appointments.

If there is a fix to this, I do not know what it is.   I take Super-B daily, and the B-12 seems to help significantly.    I would write more now, but need a nap. Blessings and good luck to all,

max

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

WOW! Max that's a tough one, but as you say at least we're...hope I don't sound like I'm whinning. One factor I hadn't been thinking about is sleep.  During treatment I needed 12 hours or more but now I force myself up after 8 or 9. My wife says why?  Guess I should rethink it and at least give myself an extra hour and see if it feels better...I do like to be up before dawn and have coffee in the dark watching the wild life awaken.  Also I have a great Pulminologist and have had numereous test.  I recently did an overnight sleep apena test and will hear results next week but don't think there's anything going on.  My oxigenization hovers around 95.  I plan to discuss increasing my B and B12 and adding Folate...sounds like that wouldn't hurt.

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

It's been 6 years since I was diagnosed with follicular lyphoma. During treatment I would take a 2 - 3 hour nap. Working between treatments was hard because I was in the office. No Naps. When I was NED I hoped the fatigue would lessen up but it really didn't. I ended up resigning myself to getting 9 - 10 hours a night. Often it was 8 - 9 hours. Over the years the amount of sleep has varied. Currently I do well with 8 hours during the week. Weekends I 'catch up' with upto 10 hours. I really hate taking naps because I always can think of things I need to do. Bottom line i learned, at this point, to just accepted the fatigue. 

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

Test results of my home overnight apena test showed an AHI level of 45...very high, very bad from what I can gather.  Another lab test is being set up but this result might just be the reason for some of my fatigue, or all of it?  Oxygen level dropped to 88% overnight.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

Gwfl,

Any AHI result of over 30 is classified as "Severe."  While apena may not completely account for your fatigue, it no doubt is a significant portion.

My wife and I both have significant apena.  Long term, it can also eliminate all REM-level sleep, causing confusion throughout the day, irritability, and other symptoms.  After beginning with a CPAP, a condition known as 'REM-Rebound' usually occures.  It did for me.

Your doctor will almost definitely get you on a CPAP machince as quickly as possible.

max

Gwfl's picture
Gwfl
Posts: 15
Joined: Jun 2018

How long did your initial "rebound" take and are you still wearing the CPAP?  Unfortunately it takes some time to get results back.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

I still use a CPAP, 17 years later.  Most insurance carriers assist toward buying or leasing them, and even do replacements every 5 years or thereabout.  Compared to cancer therapy, CPAP use is quite cheap.   Some people get off the machines via significant weight loss, if overweight when initially diagnosed, but that was not an issue for me from the get-go.   Wearing a mask is odd feeling initially, but I always use mine now, even if taking a nap.   

CPAP perscriptions and analysis are usually either by a pulmonologist or a neurologist.   My doc said that because my sleep was so interrupted I probably had not had REM sleep in a long, long time.  Most doctors, after determining that a patient has apnea, will then require them to use a machine overnight, monitoring to see how well it works, and what pressure setting to use.   At the second test, he said that I was in profound REM Rebound, which is a situation in which the brain "makes up" for lost REM sleep.  This is not harmful, or hardly even noticable, to the patient in most cases, and can run from a few night to weeks or even months.

My tests were all done at an overnight sleep lab, and also discovered that I have RBD (rem behavior disorder), in which a person does not 'freeze' during REM sleep, and can thrash about during nightmares. (During normal REM, the brain stem freezes neuromuscular activity to the limbs.)  And I have RLS.   I have had episodes in which I startled so violently in my sleep that I cleared the bed and landed on the floor.   RBD is strongly linked to the emergence of Parkinson's (> 50%).  But apnea by itself seldom has RBD.   My point is that a great deal can be learned from sleep studies.

Apnea diagnosis is not a medical emergency.  Waiting is what Americans do best,

 

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

you are amazing. Your knowledge on the medical front is vast and you articulate it so well! This board would not be the same without you. Thanks! No, I do not use CPAP but many here do.

PBL
Posts: 190
Joined: Jul 2016

Might all those sleep disorders in your case be due to that major traffic accident you suffered? Just wondering...

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

PBL, it seems quite possible to me that the wreck was a factor, but no doctor has been willing to guess in that regard.   I had a major concussion the first night, such that I was blind, and O2 levels approaching death that night, and a week later when my  lung re-collapsed.   Tauma might indeed be a factor.  I have no idea.    But, I know that most cases of R.B.D. are not trauma related.   I did not have known apnea in those days, but was skinny.

Shady, I transmitted that cash a minute ago... ;)

 

po18guy
Posts: 1044
Joined: Nov 2011

Is what I have done lately. Suspecting a recurrence of anemia, I requested some blood work. It came back as abnormal, but normal for me. Creatinine high due to chronic kidney disease, Hematocrit a very low 33, but high for me. It has been as low as 19, which provided me with overnight lodging and an intravenous cocktail last year.

But nothing to indicate why it is almost painful to remain awake at times. Headaches of migraine quality arrived and I generally never have a head ache of any type. DW claims that I AM a headache. Anyway, the Ruxolitinib (Jakafi) is known for fatigue and headaches and doctor believes that, even though no dose adjustments have been made outside of a prednisone taper, it is the Ruxolitinib causing all of this.

That is strange after almost 1 1/2 years on it, but things change. As REO Speedwagon sang, I've got to "Roll with the changes."

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