The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Extreme fatigue and total loss of appetite

Forums General Melanoma Community Extreme fatigue and total loss of appetite

  • Post
    claudia-uk
    Participant

      My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

      And he does barely eat anything.

      Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

      My husband received his first infusion of Ipilimumab 2 weeks ago. He was tired before, but since then he sleeps most of the time. About every 3 hours (during the day) he has to sleep for 1-2 hours. Then he goes to bed at about 9pm and can still sleep all night.

      And he does barely eat anything.

      Has anyone else on Ipilimumab experienced the same? Will it get better eventually?

      Loading spinner
    Viewing 7 reply threads
    • Replies
        Jerry from Cape Cod
        Participant

          Hello,

          During my first few weeks on Ipi I too had a lot of fatigue.  There could be a lot of factors at play.

          One of the autoimmune syptoms I experienced was a severe tyhroid imbalance and it happened rather quickly after the start of IPI.  There are 100% replacement sythetic drugs that will counter this.  It's a long, long processes to get the correct dosage as the amounts needed are tiny and if the thyroid is the problem your husband's doctor will take there time to get it right.

          The other issue that showed up and really made the difference is that my Testosterone level was extremely low. I've heard that most doctors do not test the "T" levels on a regular basis.  I would have your husbands doctor check recent tests and ask him to add this test to the next lab work just for peace of mind.

          The outcome for me was slow  but dramatic.  In the first quarter of IPI treatments I couldn't walk 200 feet without a long break.   Now 112 weeks out I lead a very active schedule and regularly ride my bicycle on long rides when the weather allows.

          Jerry from Cape Cod

          Loading spinner
          Jerry from Cape Cod
          Participant

            Hello,

            During my first few weeks on Ipi I too had a lot of fatigue.  There could be a lot of factors at play.

            One of the autoimmune syptoms I experienced was a severe tyhroid imbalance and it happened rather quickly after the start of IPI.  There are 100% replacement sythetic drugs that will counter this.  It's a long, long processes to get the correct dosage as the amounts needed are tiny and if the thyroid is the problem your husband's doctor will take there time to get it right.

            The other issue that showed up and really made the difference is that my Testosterone level was extremely low. I've heard that most doctors do not test the "T" levels on a regular basis.  I would have your husbands doctor check recent tests and ask him to add this test to the next lab work just for peace of mind.

            The outcome for me was slow  but dramatic.  In the first quarter of IPI treatments I couldn't walk 200 feet without a long break.   Now 112 weeks out I lead a very active schedule and regularly ride my bicycle on long rides when the weather allows.

            Jerry from Cape Cod

            Loading spinner
            ChrisTheWilsonZoo
            Participant

              While I didn't do ipi, I do have a suggestion.  Ask the doctors to check his vitamin D levels.  Extremely low vitamin D can cause extreme fatigue such as you're describing. 

              While I was doing interferon, my vitamin D level dropped to around 5.  It should be around 30.  All I did was sleep  And when I was awake, had no energy.  The fatigue was so bad, a shower might literally be all I could accomplish for the day.  Once my vitamin D levels were raised, my energy levels rebound to normal. (or at least normal for someone taking interferon!)

              Loading spinner
                Gene_S
                Participant

                  I totally agree…everyone needs to be checked for vitamin D.

                  Life Exension Foundation.com has a lot of info and the proper testing

                  available. There are a lot of testing places available but the king for vitamin D3 is "Lab Corp".

                  If you want a true vitamin D3 test contact http://WWW.LEF.ORG and get a Lab Corp testing.

                  BTW  a "30" is far too low!

                  Best wishes,

                  Gene

                  Loading spinner
                  Gene_S
                  Participant

                    I totally agree…everyone needs to be checked for vitamin D.

                    Life Exension Foundation.com has a lot of info and the proper testing

                    available. There are a lot of testing places available but the king for vitamin D3 is "Lab Corp".

                    If you want a true vitamin D3 test contact http://WWW.LEF.ORG and get a Lab Corp testing.

                    BTW  a "30" is far too low!

                    Best wishes,

                    Gene

                    Loading spinner
                  ChrisTheWilsonZoo
                  Participant

                    While I didn't do ipi, I do have a suggestion.  Ask the doctors to check his vitamin D levels.  Extremely low vitamin D can cause extreme fatigue such as you're describing. 

                    While I was doing interferon, my vitamin D level dropped to around 5.  It should be around 30.  All I did was sleep  And when I was awake, had no energy.  The fatigue was so bad, a shower might literally be all I could accomplish for the day.  Once my vitamin D levels were raised, my energy levels rebound to normal. (or at least normal for someone taking interferon!)

                    Loading spinner
                    FormerCaregiver
                    Participant

                      From your profile, it looks like your husband's tiredness has mainly been
                      caused by the dacarbazine that he has had recently. Some people have great
                      difficulty dealing with the after effects of chemo (like dacarbazine), and I
                      feel that this might be the case here. Certainly, a lack of appetite (this
                      can become a big problem in itself) and tiredness are not uncommon. I don't
                      know how much Yervoy (ipilimumab) is contributing to the severity of these
                      symptoms.

                      I agree with the view that vitamin D levels are also important. Deficiency
                      can cause fatigue and chronic pain, and there is some debate about what the
                      correct levels should be. My feeling is that many people who have a chronic
                      illness are deficient, and it is better to take more than less.

                      Frank

                      Loading spinner
                        claudia-uk
                        Participant

                          Thanks to everyone for your suggestions. We have an appointment tomorrow at the hospital and will make sure to mention everything.

                          Loading spinner
                          claudia-uk
                          Participant

                            Thanks to everyone for your suggestions. We have an appointment tomorrow at the hospital and will make sure to mention everything.

                            Loading spinner
                            JerryfromFauq
                            Participant
                              There maybe problems with getting th Vit D tests paid for if one is on Medicare and your secondary insurance takes it’s clues from Medicare.
                              Medicare sent m a letter saying that Vitamin D testing is a routine test that they don’t cover, to pay the $238 out of my on pocket. My level was low.

                              Loading spinner
                              JerryfromFauq
                              Participant
                                There maybe problems with getting th Vit D tests paid for if one is on Medicare and your secondary insurance takes it’s clues from Medicare.
                                Medicare sent m a letter saying that Vitamin D testing is a routine test that they don’t cover, to pay the $238 out of my on pocket. My level was low.

                                Loading spinner
                              FormerCaregiver
                              Participant

                                From your profile, it looks like your husband's tiredness has mainly been
                                caused by the dacarbazine that he has had recently. Some people have great
                                difficulty dealing with the after effects of chemo (like dacarbazine), and I
                                feel that this might be the case here. Certainly, a lack of appetite (this
                                can become a big problem in itself) and tiredness are not uncommon. I don't
                                know how much Yervoy (ipilimumab) is contributing to the severity of these
                                symptoms.

                                I agree with the view that vitamin D levels are also important. Deficiency
                                can cause fatigue and chronic pain, and there is some debate about what the
                                correct levels should be. My feeling is that many people who have a chronic
                                illness are deficient, and it is better to take more than less.

                                Frank

                                Loading spinner
                                K in LA
                                Participant

                                  My husband is due to get his 3rd ipi infusion on Friday & ever since the 1st infusion his predominant side effect has been the fatigue.  He's in bed right now as we saw the oncologist this morning & anything beyond sitiing watching TV or reading wears him out.  He's also sleeping about 12 hours a night.  The oncologist is now checking his adrenal function & vit D levels so I can't comment any further on that yet…

                                  It may be nausea that is affecting your husband's appetite.   We switched to blander foods, like porridge for breakfast, from the time he started Ipi, l& my husband's appetite hasn't been effected — although he still feels nauseous at least once a day & occasionally has to take anti-nausea meds for that. 

                                  Loading spinner
                                  K in LA
                                  Participant

                                    My husband is due to get his 3rd ipi infusion on Friday & ever since the 1st infusion his predominant side effect has been the fatigue.  He's in bed right now as we saw the oncologist this morning & anything beyond sitiing watching TV or reading wears him out.  He's also sleeping about 12 hours a night.  The oncologist is now checking his adrenal function & vit D levels so I can't comment any further on that yet…

                                    It may be nausea that is affecting your husband's appetite.   We switched to blander foods, like porridge for breakfast, from the time he started Ipi, l& my husband's appetite hasn't been effected — although he still feels nauseous at least once a day & occasionally has to take anti-nausea meds for that. 

                                    Loading spinner
                                Viewing 7 reply threads
                                • You must be logged in to reply to this topic.
                                About the MRF Patient Forum

                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.