MRF-Logo2019-Horizontal-RGB
Headaches/dizziness
REGISTER
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.

Headaches/dizziness

› Forums › General Melanoma Community › Headaches/dizziness

  • Post
    • October 31, 2017 at 2:14 am
    Kristi A.
    Participant

      Hi everyone.  I was hoping someone could give me some advice on who to contact about headaches and dizziness I have been having. They have been going on for about a week. At first they were coming later in the day but now I am waking up with them and they progressively worse as the day goes on. I'm stage 4 melanoma (bone, kidney, lung mets) but have been off Keytruda since July. My last Pet scan was also in the middle of July and that came back clear (NED) I developed severe joint pain from the Keytruda so i have been seeing a rheumatologist who just said last week that based on tests and symptoms I could possibly have SLE (lupus). With all the different doctors I see, I don't know if I should contact my PCP, rheumatologist or oncologist.  I know that some patients with lupus experience headaches and I also know brain mets can too. I am not scheduled to have my next PET scan until November 15th. So it's been almost 4 months without a scan.  I'm hesitant to go to my primary because I'm afraid he will write it off as no big deal and not do a scan. I have never had a headache last this long other than when the Yervoy caused aseptic menegitis right after I was diagnosed.  The headaches seem to be behind my eyes and pressure type feeling.. Ibuprofen and Tylenol barely touch it. Any advice on who I should contact? I'm at a loss at what to do. Any help is greatly appreciated.  

    Viewing 5 reply threads
    • Replies
        • October 31, 2017 at 2:38 am
        SABKLYN
        Participant

          Hi Kristi,

          Sorry you’re dealing with this.  if it was me, I’d check in in with my oncologist first.  

          • October 31, 2017 at 4:13 am
          MovingOn
          Participant

            I agree with the Oncologist recommendation also. Every time I see my Oncologist I either get blood work or scans done before or if they weren’t ordered beforehand then the end up getting ordered during my appt because of something I mentioned during the appt (headache, or fatigue,etc).

            Ask for bloodwork to check for hypophysitis (this doesn’t seem likely because of the time since your last Keytruda dose). They may also want to see if you are having sinus headaches from allergies (that would be a great outcome because it can be fixed)

            • October 31, 2017 at 2:07 pm
            Kristi A.
            Participant

              Thank you both for your advice.  I contacted my oncologist and I'm just waiting to hear back. Hoping it's nothing worrisome. 

              • October 31, 2017 at 5:28 pm
              miaka618
              Participant

                Kristi, did you hear back from your oncologist? It kind of sounds like hypophysitis to me even though it's been several months since your last treatment. From my understanding, immunotherapy side effects can come on at any time. With my hypophysitis, the pressure was right behind the eyes and it cause my eyes to go wonky from time to time and it just got worse as time went on. 

                I hope you can get rid of those headaches!

                  • October 31, 2017 at 6:14 pm
                  Kristi A.
                  Participant

                    I sent a message this morning and the nurse wrote back asking about nausea and if I've taken anything for the headaches.  I replied back right away but that was 5 hours ago and I've heard nothing since. Starting to feel like I'm not being taken seriously or maybe they are just really busy. Thank you for your reply. I will definitely bring that up to them. 

                    • October 31, 2017 at 11:47 pm
                    MovingOn
                    Participant

                      I ended up going to urgent care when my hypophisitis started. The headache got that bad. At the time it was on a weekend and my Oncologist said for me to go to urgent care within the same health system and she would work with the urgent care doctor on what extra things to check.

                      • November 1, 2017 at 2:37 am
                      miaka618
                      Participant
                        Yes, me as well. My oncologist told me to go to the ER. I had an MRI (which was quite uncomfortable with the headaches) and put on dexamethasone soon after. My headache was gone within 2 hours of taking the steroids. I was suffering for about 2 weeks up until that point. It was quite a relief.
                      • October 31, 2017 at 6:43 pm
                      guynamedbilly
                      Participant
                        I had a headache after my third injection on Nivo that lasted from Monday to Saturday. I’d never had a headache like that. On Tuesday the Oncologist told me to start taking Ibuprofren, after Tylenol and aspirin didn’t work, and it finally let up on Saturday. I realized that we had installed new led lights in my office, and got some anti glare glasses and that solved it. I’m sure the Nivo made it worse than it would have been.

                        I’d try the Oncologist and see if they could move up my PET scan if I were you. That way you can move to the next step of finding what’s wrong. As it is now, I would kind of doubt you or the GP would want to do anything that might compromise the scan.

                        • November 3, 2017 at 2:42 pm
                        SoCalDave
                        Participant

                          Hi Krista,

                          Don't have much advice to give you as far as headaches go. I'm stage 3b for the last 7 years but just wanted to let you know my thoughts and prayers are with you! Hang in there and never ever give up!

                          David

                      Viewing 5 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.

                      Popular Topics