Fatigue

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  • Gwfl
    Gwfl Member Posts: 39 Member
    #22
    Max Former Hodgkins Stage 3 said:

    Gwfl, Lazarus, et al

    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

    WOW! Max that's a tough one,

    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
    lindary Member Posts: 711 Member
    #23
    sleep

    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
    Gwfl Member Posts: 39 Member
    #24
    Test results of my home

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #25
    Gwfl said:

    Test results of my home

    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.

    Apena

    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
    Gwfl Member Posts: 39 Member
    #26
    Max Former Hodgkins Stage 3 said:

    Apena

    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

    How long did your initial

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #27
    Gwfl said:

    How long did your initial

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

    CPAP

    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
    ShadyGuy Member Posts: 922 Member
    edited February 2020 #28
    Max ....

    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
    PBL Member Posts: 366 Member
    #29
    Max

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

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #30
    Sleep

    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
    po18guy Member Posts: 1,505 Member
    #31
    Hitting the wall

    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."

  • Gwfl
    Gwfl Member Posts: 39 Member
    #32
    Nice to have the forum back. 

    Nice to have the forum back.  During the break I got my apnea info back, got my equipment together from Medicare and have been using it now for almost a week.  My AHI has dropped from 45 to around 30 and I'm starting to feel much better.  Still physicially weak due to lack of exercise from being lethargic for so long but also feeling motivated to start exercising again.  At the same time I saw my GP and got scolded for not hydrating enough and have sense been consuming a lot of liquids....and blood pressure has risen and feeling better from that too.  Prospects look good.  Maybe chemo side effects were not as much of a problem as I thought.....we'll see.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    edited March 2020 #33
    ShadyGuy said:

    Tortoise

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

    Turtles are FAST

    In first grade, my elderly teacher told my mom at Parents' Day that 'He is smart, but slower than pond water. And it never moves.'  When teaching high school, I was nicknamed Ben Stein, for the excitement I exuded.   At parties, I'm the Weekend at Bernie's guy proped up in the corner.  Animatin is way over-rated.

  • Gwfl
    Gwfl Member Posts: 39 Member
    edited March 2020 #34
    Update

    Been working with the CPAP equipment a few weeks now and feeling much better.  I've only managed to reduce my AHI by 50% but even so am finding more engery now.  Also more hyrdration is very helpful.

    Also had another PET scan last week waiting for results this Thur.....fingers crossed.

  • lindary
    lindary Member Posts: 711 Member
    edited March 2020 #35
    Gwfl said:

    Update

    Been working with the CPAP equipment a few weeks now and feeling much better.  I've only managed to reduce my AHI by 50% but even so am finding more engery now.  Also more hyrdration is very helpful.

    Also had another PET scan last week waiting for results this Thur.....fingers crossed.

    PET

    Good news that the Cpap is helping. I've got my fingers crossed that you get good news on the Pet scan too.

  • Gwfl
    Gwfl Member Posts: 39 Member
    edited May 2020 #36
    lindary said:

    PET

    Good news that the Cpap is helping. I've got my fingers crossed that you get good news on the Pet scan too.

    Update:  Finally got PET scan

    Update:  Finally got PET scan results and there was a small area of "ground glass" in my left lung, something that I've had show up before which was resolved by waiting 2 months and then doing a CT scan w/contrast to see if the area was gone.  This CT scan (last Monday) showed that everything was clear and that I was completely NED.  Dr wants to remove my port and do another PET in 6 months.  What a relief!!

    The CPAP therapy is going well.  My AHI is averaging below 5 cms and I'm sure I can get it lower.  My fatigue is pretty much gone.  The problem now is I'm so weak from lack of excerise that it will take a long time to climb back up.  Doctors also threw in a Stress test and echo cardiogram...which all turned out good.

  • Salome81
    Salome81 Member Posts: 2
    edited May 2020 #37
    Gwfl said:

    Was feeling particularly bad

    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.  

    Fatigue

    My daugther just star her quimo and she is always tired, is that normal? will ever go away? or as I read in your post, the fatigue is a side effect, and how you think I can help her? she is 17 TKS :)

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