• is extreme fatigue normal before even starting chemo?

    Asked by 1toughmom on Friday, October 17, 2014

    is extreme fatigue normal before even starting chemo?

    I have been healing from surgery very slow but despite pain I've managed to keep doing my normal daily things but today I have felt as though I couldn't mov . Stayed in bed all day and like I've ran a 30 mile marathon. I have only had surgery and not begun chemo yet is this normal or something I should call Dr about?

    27 Answers from the Community

    27 answers
    • serenity101's Avatar
      serenity101

      Since this is something new, I would check with the doctor about if it was me.

      over 6 years ago
    • lilymadeline's Avatar
      lilymadeline

      I would call your doctor asap, it sounds like something is really wrong and you definitely should be seen immediately.

      over 6 years ago
    • CrazyHarry's Avatar
      CrazyHarry

      Having abdominal surgery is a very thought thing. Depends on what they did, but I would expect 2-6 weeks for a full recovery. For me, I was feeling pretty good after a week. I had a rectal resection and a temporary ileostomy for surgery 1.

      My advice, rest when you need to.

      over 6 years ago
    • cam32505's Avatar
      cam32505

      It might also be anxiety, but doesn't hurt to call the onc to make sure there is nothing going on like infection.

      over 6 years ago
    • meyati's Avatar
      meyati

      It's probably stress. Check with your onc-ask for lab work for anemia- maybe thyroid function. Stress can cause fatigue, and it can cause glands like thyroid to be wacky. I've been going through that. A borderline thyroid can be a problem with stress.

      You'll probably feel worse when you do chemo- most people do- and you don't want to go into treatment already sick.

      over 6 years ago
    • AmyJo's Avatar
      AmyJo

      Don't try to over do it when recovering from surgery. Take it easy on yourself!

      over 6 years ago
    • ffingar's Avatar
      ffingar

      My first thought is that doing your "daily normal things" is not helping your recovery. Since your body is not in "normal" mode, you need to modify your day. Rest when needed and make sure you are eating well. Ask for the results of your last labs and see if there was anything of concern there. When you start chemo, they'll be doing labs every time, so you'll have current numbers. And yes, it doesn't hurt to monitor yourself for infection: any fever or pain? Do you have your port yet? If yes, watch for clots.

      over 6 years ago
    • kalindria's Avatar
      kalindria

      It was normal for me but I had a huge tumor and lots of pain. Also a different kind of cancer. I'm sure you medical team can answer this one.

      over 6 years ago
    • 1toughmom's Avatar
      1toughmom

      I modified my daily routine or at least I felt I did. I know my levels like iron calcium sodium and all that has been low. I was told not to take my full dose of iron meds until I started going to the bathroom fairly regularly. I had a tumor removed and a resection done and it wound up being more invasive than originally planned. I did have an infection in the incision but was told it had cleared up. My "norm" since surgery has been I would feel tired but would try to push through and being gently active would help the fatigue but yesterday I could not muster the energy to even get out of bed. I know I have been battling some depression since my diagnosis which I've been told is normal as long as it's monitored. Stressed is an understatement right now for me. Just before my diagnosis we lost our house and are having to stay with my in-laws which now doesn't seem to be so bad since I have "extra help" but it is stressful still. My husbands job (family company) is very demanding. He tries to be there as much as possible but sometimes I feel I'm doing this alone. So I'm not sure if this is all surgery related or stress related. Was just curious if anyone else had felt this way. I'm a 32 year old stay at home mom of 4 children (11, 10, 8 & 6) one of which (10yr old) is ADHD and has anxiety issues. I've always been the "strong" one and backbone in my family. I helped cared for my dad who passed of lung cancer and was primary care taker of my grandmother who also passed of extremly rare lung cancer.

      over 6 years ago
    • sonofwarrior's Avatar
      sonofwarrior

      Definitely talk to doctor. Blood test is probably needed, to be sure that you are not anemic and in need of iron infusion before starting chemo. Get your strength back before starting the chemo!

      over 6 years ago
    • 1toughmom's Avatar
      1toughmom

      But today I'm still a little fatigued but I have motivation to try and do. Ive been told I will have good days and bad just didn't know if this is what was meant or not

      over 6 years ago
    • 1toughmom's Avatar
      1toughmom

      Yes getting my strength back is next goal surgeon said. He said the oncologist may look to b12/b6 injection to help my body absorb the iron better and possibly another injection (not sure of name) to help my body produce blood cells if they continue to stay low. He said they won't allow me to start chemo if they are low before even starting

      over 6 years ago
    • ffingar's Avatar
      ffingar

      How long ago was your surgery? And which blood cells are you referring to - red or white? I ask bc the shot to boost white blood cells (Neulasta or Neupogen) requires some prep time with Claritin bc of the bone pain associated with it.
      Having four kids to care for is also not easy. Try to use the time they are at school to rest so you have more energy to offer them when they are home. Naps are very important during chemo as well.

      over 6 years ago
    • 1toughmom's Avatar
      1toughmom

      Well according to the lab reports red white and platletts were low

      over 6 years ago
    • 1toughmom's Avatar
      1toughmom

      Oh and surgery was on sept 26th. So 3 wks now

      over 6 years ago
    • ffingar's Avatar
      ffingar

      That probably means you will get shots for both unless you improve via diet. I found I was eating better by the fourth week after surgery and my surgeon said I could eat anything. (I had a perforated bowel with tumor which was removed along with the ascending colon). It also explains your fatigue. Hope to hear that things will improve soon.

      over 6 years ago
    • meyati's Avatar
      meyati

      1toughmom---you probably have accurately diagnosed yourself. you still need to make sure that you don't have a medical problem. Ask your doctor about folic acid pills that you can get at Walmart. That helps stimulate the production of healthy red blood cells, which is important for energy. Ask if your thyroid has been tested (TSH). I mentioned to my oncologist a concern about vitamin D--I was taking one pill a day- and I was still out of range low, so he's monitoring that now. My D is in range now.
      Stress is horrible-I've been having a bit here. I got a notice from the Navy that my dead X-husband wouldn't be paying alimony anymore-OK-but I'm on some low-income social security programs, and they decided that my X left me a giga-zillion dollars, how stupid is that? I sent in the required paperwork, and they contacted me that the Navy didn't use the correct form. I told the idiots to talk to the Secretary of the Navy, and I had a congressman that I could go to. That's settled, but I feel like I'm being kicked in the stomach at times. I just don't have energy to do things.

      Don't go to a MyCD class for pain, stress, and fatigue. All it will do is to put you in a corner crying. It's mind over matter-mind over pain. For fatigue, we were told to publicly make goals, state them, write them down. Then next week, go in and confess that you didn't meet your goal or how you somehow managed to do it. I tried to explain that I was on a new thyroid med-and I didn't even know how I felt-better- worse. They didn't understand that, so I quietly left at the end, when it was time to actually do the goals.

      OK- Wed. I spent 6 hours on hold, talking to the Navy, trying to FAX more data to the Navy, and calling the Navy and being on hold again. I had a choice to control my future-go to MyCD or deal with the Navy.
      After that, I tried to eat, slept for about 6 hours, got up and went to bed, where I slept for another 6 hours. Then MyCD thought poorly of me, when I said that when life frustrates me, I reduce stress by kicking walls. Who wouldn't kick walls after dealing with SS like this? Either kick walls or I don't know what? I was told last week that I could reduce stress by saying the alphabet by flowers---Aster, Bluebells, carnations, etc. This is put on and financed by the federal gov to get us off of pain killers and pills that help us sleep, not cry, feel less anxious. I take 4 meds-
      I'm allergic to pain killers-I take 2 stomach meds, thyroid, and antihistamine. Just don't kick a wall with an injured foot. I did that once or twice-- MyCD made me cry when I got home-

      So talk to your doctor-find out if there's a medical condition, if not- tell him the stress is really, really getting to you- and start by talking to the nurses. Many doctors actually listen to them about evaluating how the patient is doing-go talk to a counselor. Many of us don't really talk to medical staff about how tough it is-what life is like---but we need to give them a clue.

      over 6 years ago
    • gonewest's Avatar
      gonewest

      @meyati. What is a MyCD class? Sounds draconian.

      over 6 years ago
    • meyati's Avatar
      meyati

      The DEA, FDA, and medicare and medicaid decided to keep us from being dopers. They contacted UC Stanford medical (Behavioral Science) for ways to keep people from going to any type of doctor unless you have gross symptoms of a stroke or a heart attack. Don't bother your PCP-don't go to Urgent Care, you don't need the Emergency Room.

      You can do a search--use: MyCD Stanford pain control-- There are lots of resources about this on how wonderful that your pain can be controlled by your mind. At the session last week, they said that next year they will focus on cancer patients. below is a copy and paste from the Yahoo search results. Notice they say Arthritis- but the federal plan is for everything- I signed the paper that gave the gov address, and they snatched it from me. I wish that I took a pic of it.

      Chronic Disease Self- Management Program - New Mexico Health ...
      www.nmhr.org/retreat/2012/8-p1245.pdf
      Presentation Outline… •Impact of Chronic Disease •Self-Management •Role of the Department of Health Arthritis Program •Stanford University's Model

      Of course NM is the test state-low education, lots of Native Americans that are long suffering, A rural state with lots of chronic pain from diabetes, car and farm wrecks, etc. Last week a 8 year old boy was run over by a huge farm tractor-his 12 year old cousin climbed on-switched on the engine.

      Anyway- they tell you to control pain, frustration, and fatigue by occupying your mind-read, crochet, watch TV, exercise for 20 minutes, call a friend, go to a movie instead of the ER, take a walk, pick a flower, cook, do Yoga, pray, meditate, make a plan for the week. Okay-last night I mowed the lawn- a small lawn, but my thyroid has had me sleeping about 16 to 20 hours a day. It took me 40 minutes to get the mower out and put away, mow, electric cords, 2 rest breaks, a glass of juice. I came in and I was surprised that it took me 40 minutes-I thought that I had spent an hour-It was cool, but I was covered with sweat and felt like I worked for about an hour and a half. This AM, I've been pulling weeds and pruning- removing and replacing flagstone to get it cleaned up. I might sit down and fall asleep for over 8 hours, and sleep the same way the next day.

      From what I've seen from many of you--you have intense prayer- meditate-we all get online here to talk. I practice self-hypnosis that MyCD and Stanford don't seem to recognize. I use that with prayer.

      I was told that it was by the state to help cancer patients, because MyCD wanted to have it in a cancer clinic and associated with MD Anderson. I resent having people with a myriad of health problems-infections-coming into my oncology unit. Then they said-we'll do cancer next year.
      They called to confirm me, and that it was run by the city of Albuquerque Senior Affairs-well-OK-sort of. Then I got in and they start talking about the hated DEA, FDA, -not so hated Medicare and medicaid controlling our pain meds. They were playing hypnotic music- lights low, Everybody but me desperate to kill pain.

      I'll ask you- Do you really enjoy going to an ER or Urgent Care and waiting for hours-and at times being treated rather rudely? Do you enjoy paying a co-pay that should buy a new blanket-takes away from your scan co-pay? I'm allergic to Tylenol, NSAIDs, so about all I can take is codeine sulfate, then the jerks call me a dope addict because I refuse everything with Tylenol. What are we going to do-have to state how many times we said the alphabet by flowers? I for got this one----Say 99, then subtract 3 and say 96, then 93, 90, on down to zero. They say you can do flowers or subtracting while vacuuming. They say that is a good way to fight pain- vacuum and subtract. Knowing me, I'd probably plug the vacuum up with my coonhounds.

      I don't think that these people in the city, in the state department of health, in the DEA, FDA, and medicare have ever seen anybody in an extreme rheumatoid arthritis attack, where the bones are being twisted. I don't have that, but I've seen it. They obviously haven't watched anybody die from cancer-etc. If anybody suggests a course on pain and medication management- ask them if this is the Stanford study-- tell them that you pray-do yoga- whatever, and if they think that you enjoy paying to wait hours to be insulted-they are nuts.

      People ask me how I handle fever-wash my hair-sometimes 3 to 6 times a day, pour rubbing alcohol over my body. Moan and groan-then my family hauls me in. For some reason, when I'm really sick, I do not want to go to the doctor-even ones that I like. The last time in the ER, the jerk decided that my dentist tried to strangle me, when my head had to be held still to pull out a broken tooth---Give me a break. I wish that i had stuffed my mouth full of gauze and went mumble, mumble and pointed at my mouth-less said -the better.

      over 6 years ago
    • GillianJ's Avatar
      GillianJ

      You've had surgery, your body needs time to heal. Listen to your body, when you feel tired you need to rest.
      I'm sorry to hear you're going through a hard time with losing your house. I hope this doesn't sound rude, but it may be a bit of a blessing to live with your in-laws while you're going through this so they can help with your kids.
      Chemo affects everyone differently. Some can keep working and go about their lives, others get really sick and can't do much. Just take it easy, listen to your body, and take advantage of the good days.

      I just turned 30. In March of this year I had dark stool and ended up getting a colonoscopy to check for bleeding. They found a tumor the size of a ping pong ball in the upper right corner of my large intestine. In April I had surgery to remove the tumor, 7 inches of my colon, and 30 lymph nodes. I was in the hospital for 5 days. On the last day my surgeon came with bad news, cancer was found in 2 of my lymph nodes, I had colon cancer, and would have to have chemo.
      I was to take 4-6 weeks to heal before starting chemo. I started chemo in May. 6 months of Folfox, going in every other week (so 12 treatments).
      At first I was only down for about 4 days. I would get chemo on Wednesday, be there for a few hours getting 2 of the Folfox drugs, then they'd hook up the portable pump that would administer 5-FU for the next 46 hours. I would start feeling sick that evening. On Friday I would go back in to have the portable pump removed. Friday I would just sleep all day. Saturday I would feel a bit better, and then by Sunday I was feeling almost normal. Then over time it started taking longer to recover. It now is a week before I feel normal again.
      I am now down to my last 2 treatments. It's been tough, but I've learned I'm tougher. You will learn that you are stronger than you knew. You will learn how great the people in your life are as they support, love, care, bring you meals, ask how you're doing, and offer to help any way they can. You can do this!!!! Good luck!

      over 6 years ago
    • meyati's Avatar
      meyati

      I started telling my son about MyCD when I got home. he said the VA did it, and most vets walk out.

      over 6 years ago
    • gonewest's Avatar
      gonewest

      @meyati. People with pain are shown very little compassion. We are making mercy illegal.

      over 6 years ago
    • gonewest's Avatar
      gonewest

      Tough mom, I had surgery a year ago where my kidney et al was removed. It's hard to rest when you are used to being active. Surgery pain should not be pushed through to the point of exhaustion. You are only three weeks out. Take it easy. Lie there if you feel like it. Get up and down throughout the day if you can but pace yourself. Your body is still healing. Call the doctor just to be sure it's not more than exhaustion.

      over 6 years ago
    • meyati's Avatar
      meyati

      When I had my first child, she was breech. Pretty much anything that could go wrong did go wrong. This was when they checked the cervix through the rectum, so the vagina wouldn't be contaminated. I reached the point where I demanded that they call a Taxi or the police, I was leaving- They asked 'Why?" I told them that taxi drivers and cops delivered lots of babies, and knew where babies came out of. I told them that they certainly wouldn't have any children, because they didn't know where to stick their plumbing. They checked and found little feet coming out. A few things like this, and I find it hard to believe that people that just have head aches or a sore back from working at a computer can tell me how to deal with pain.

      This is one reason why I prefer usually military doctors-- they've been shot, bailed out of planes, went through basic training at least. My first baby was at a naval hospital. Because 2 of the doctors had been shot, and they decided that I talked like a Bos'n mate-they should take me seriously- If they had been civilians, they probably still would be standing around waiting for the baby to come out of my ear or something.

      over 6 years ago
    • MsMope's Avatar
      MsMope

      1toughmom: Is extreme fatigue normal after major abdominal surgery, chronic anemia and everything you've been doing post-op. Probably yes. You have an awful lot on your plate, but you have to slow down. Let others help you. It will make them feel good to do something nice for you. I wish you good luck and lots of help from those who love you while you're underdoing treatment for your cancer.

      meyati: I have chronic pain in both hips from stray bits of calcium. Think kidney stones in the hips. Physical Therapy helps a lot. Pain meds like hydrocodone make me throw up. Nothing else helps a whole lot except for my new TENS unit. It buzzes on one hip or the other, and really helps mask the pain via the science of neurology. I think chronic pain is nothing to mess with. You should get whatever it takes to reduce your pain so you don't live in XXX. I told my Physical Therapist I could handle the discomfort of surgery, radiation and chemo because I knew it would be short-lived, but the pain in my hips makes me think about buying a gun. That's when she gave me the TENS unit. MyCD sounds horrible. I'm not a group therapy kind of gal.

      -MM

      over 6 years ago
    • meyati's Avatar
      meyati

      I went for fatigue-not pain--For over a year I had been sleeping for over 16 hours a day. I think that my new thyroid regime is helping. I can do more before I fall asleep after lunch, I walked the hounds the last 2 days, mowed the lawn-which I thought took over an hour, but it was only 40 minutes. It was cool-and I was drenched like it was in the high 90s and about 2 PM. I had to take breaks, and it was an easy job.

      I thought that maybe getting out of the house and being around others with low expectations would help me somehow. I don't care to be in a group modeled after Chairman Mao's China, where individuals in groups had to declare their goals to be better Chinese Communists, and then go the following week and publicly confess their lack of accomplishments.

      I told them that my thyroid had been out for several years, radiation didn't help that either-and with the thyroid change- They didn't seem to understand that my goal was to stay awake for 8 solid hours a day for 2 days in a row.

      I had several weeks where I didn't know how I felt--Maybe I felt like a Zombie--I just wanted to sleep more---lie in a hot bath---try to walk the dogs-I love that-they are 100 lb coonhounds. I didn't care if I ate- my sugar got low. Anyway, oncology thought MyCD was something else than what it was. I let them know it wasn't what they were told.

      Then, I'm not exactly a team player-and I'm Irish-which means that mental-emotional counseling is wasted on me. My female hound just let me know that my sugar is getting low-and I need some juice and go to bed. I've found out that if i don't go to bed when the dogs tell me to, that I'm in various forms of misery the next day. Sat. I'd like to stay awake long enough to walk the hounds, pull some weeds, and get the front porch ready for halloween.

      My son is a disabled vet, and he has a tens unit that he likes. It's good for injuries like you and my son have. I really do appreciate your idea of the tens unit.

      over 6 years ago
    • Keith59's Avatar
      Keith59

      Yes.....

      over 6 years ago

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