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Scan result…trying to solve the mystery

Forums General Melanoma Community Scan result…trying to solve the mystery

  • Post
    keepthefaith11
    Participant
      Quick background. My dad was diagnosed with stage 4 melanoma back in July. He had 13 tumors in his brain which were discovered because of the seizure he suffered.

      He went through whole brain radiation, which was the only treatment they would do in his home of Sweden. They only do gamma knife on four or fewer tumors. I was firmly against this but we were left with no choice. Two months after diagnosis he had another seizure and two months after that yet another one.

      He got through five infusions of opdivo before developing diarrhea and it had to be discontinued. In December he got really ill with the flu and was hospitalized. Ever since then he has been deteriorating. Last week he started running a super high fever and his blood pressure plummeted and pulse went up to 180. He was rushed to the emergency room and they suspected it could be sepsis. They are still not sure if it were but either way he was in bad shape. He came back from that and it’s stable now.

      His overall condition is now to the point where he is unable to move, sleeps most of the time, and it’s pretty much in a daze most of the time when he’s awake. He does have moments where he is completely on and will respond clearly and talk. It is like he drifts in and out of awareness.

      This is mind-boggling to the doctors since the latest pet scan and MRI shows disappearance of two lymph nodes in the abdomen and brain scan shows disappearance of many tumors and 50% shrinkage of the others. He has been on TAF/MEK the past six weeks. We are all wondering how he can be acting so completely sick when the cancer has gotten so much better. They are discontinuing the anti-seizure medication to see if that could be part of it. They have done all tests on pituitary and thyroid function as well as Vitamin deficiencies.

      The latest brain scan did show damage in the white matter of the brain and it looks like fluid is not flowing properly. So today he ended up having a spinal tap and pressure check of the brain. We have not heard back yet. They will put in a shunt if the tests show issues in that area.

      The doctor is talking about possible brain damage from immunotherapy which to me sounds completely unrealistic. Looking up the odds of the severity he is experiencing being from immunotherapy it’s pretty much unheard of from what I’ve read.

      What do you guys think? Has anybody heard of white matter damage in the brain with brain tumors? Or what could be causing this?

      It is so incredible that he has responded so well to the cancer treatment and cancer is not our worry at this point. All the other issues are. We would be on cloud nine with these kind of scans if it weren’t for the fact that he pretty much acts like a physically handicapped person with dementia.

      Any help will be appreciated!

      Annie

    Viewing 5 reply threads
    • Replies
        cancersnewnormal
        Participant

          Annie, I'm so sorry to hear this. Hopefully the fluid situation in his head can be corrected and will eliminate the issue. The doctor suspecting brain damage from immunotherapy seems, as you say, unrealistic. Particularly given the research and data from as far back as 2012 showing that WBRT would be the primary culprit.

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3400082/

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762274/

          While it is certainly very good news that he responded well with tumor reduction, I would most surely be speaking with a radiation oncologist or neuro-oncologist regarding the potential effects that whole brain may have done. 🙁

            keepthefaith11
            Participant
              Thank you for the links! I wish they would have done gamma knife or something like it instead. But when I read reports about onset of mental deterioration it seems it would not have happened this quickly. It basically started after the third seizure 4 months after radiation started. Part of me thinks maybe this is because of the damage to seizures did, also I have hopes that he could be the seizure medication he is on. Since with each seizure they upped the dosage and with each seizure his symptoms got worse. They completely took him off of Keppra today.

              Annie

            jennunicorn
            Participant

              Just want to send some love and hugs to you Annie. I can't imagine how hard and frusterating it is to be excited that the tumors are going away but he's not doing better… I really hope it's something that can get solved and he can start to feel better soon.

              debwray
              Participant

                Oh Annie,

                So sorry to read this update. Sounds like you need the help of the neuro radiation oncology team to diagnose the difficulties and to sort out the best treatment for your Dad at this stage..If it was immunotherapy related then steroids seem to be first port of call..and might even help with swelling that was radiotherapy related.  So difficult even without being in different countries.

                Hope the shunt if needed works well.  You will be in my thoughts and prayers tonight.

                Hugs and best wishes

                Deb

                xx

                  keepthefaith11
                  Participant
                    Deb, thank you. He has been on some kind of dose of steroids since the first seizure back in July. They have increased and decreased the dosage depending on what they saw on the scans. They would also increase it with each seizure. They just increased it again a few days ago.

                    Annie

                  Bubbles
                  Participant

                    Hey Annie, 

                    So sorry you and your dad are now dealing with this.  The changes noted in the brain studies related to the white matter can be secondary to whole brain radiation.  I have deligently posted every report I have come across related to side effects of immunotherapy.  The typical ones are fatigue, rashes, colitis, pneumontitis, arthralgias, hypothyroidism.  But, as more folks have taken these meds we have learned more things can occur as well…anemias, cardiotoxcities, etc.  I just published my 7th update here:

                    http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/side-effects-of-immunotherapy-part-7.html

                    If you follow links within each post leading to the previous ones, you will find two that relate to encephalopathies secondary to anti-PD1.  One is in the Feb 2016 post "fasciitis and encephalopathy". The other is the last article in the March 2016 post "more serious side effects with anti-PD1"

                    IF…your dad's brain changes are due to anti-PD1 he needs steriods asap and may see an improvement in his symptoms.  If there is blockage in the drainage of the CSF then a shunt would be in order so that pressure can be relieved as well as prevent increased pressure on the brain secondary to the build up of that very fluid.

                    Don't know if theis helps.  But it's the best I've got.  Hang in there. love, c

                      keepthefaith11
                      Participant
                        Thank you Celeste. He has been on steroids pretty much since July at different dosages. How would they immunotherapy attack the brain? It seems like a lot of the diseases you can get like meningitis would be from viruses. I have been trying to read up on this but I’m slightly confused. Would it be like an autoimmune attack to the brain that would in turn cause lasting inflammation?

                        Annie

                        ed williams
                        Participant

                          Hi Annie, I read some of what Celeste posted, so I am not sure if this information has already been given to you but here we go anyways. In one of my trial updates Feb 2015 of checkmate 067 trial of Ipi/nivo or either as monotherapy there is a section on Nivo "Rare but potentially serious side effects of nivolumab" they changed the language from "Inflammation of the lining of the brain and spinal cord " to Inflammation or loss of the lining of the brain and spinal cord"  Now I not braf mutated so I don't follow the side effects profile that closely but together with whole brain radiation and targeted therapies and Immunotherapies there could many possible explainations for the side effects. I don't remember if you dad is being followed by a melanoma specialist, but it would be suggestion to go in that direction if at all possible!!!! Best Wishes!!!Ed

                          keepthefaith11
                          Participant
                            Thank you Ed! He is seeing a melanoma specialist in his hometown. Actually this hospital was on the melanoma International website as one out of two hospitals recommended for melanoma.
                            I know for a fact they would be a lot more aggressive here though. They are very conservative over there.

                            You are right about the various forms of treatments he has gone through and that all of them could have caused this mess. It started with yervoy last spring then whole brain radiation, steroids, anti-seizure meds, opdivo, and now the TAF/MEK combo.

                            He got completely off of the anti-seizure meds yesterday. We are praying that this will make a difference!
                            He has gotten worse after each of the three seizures. So one could think that it is the seizures that have made him this way. But also with each seizure they have drastically increased his anti-seizure meds. The neurologist did say that he might be one of the people who can tolerate them. We will have to wait and see. The upcoming week or two will be very telling.

                            Annie

                          snow white
                          Participant

                            I am so sorry that your Dad is struggling so hard.  I can only imagine the amount of frustration this brings you.  Are you with him now or are you back home?  Hopefully these docs can figure out what is going on and give you some better answers.  Hang in there, you are a great support to your family.

                            xo Jen

                              keepthefaith11
                              Participant
                                Thank you Jen. I am not with him right now I am back home. It is so frustrating being so far away. I just want to go into the hospital and shake the doctors to get some answers. They say themselves they have never seen a situation like this. I am just devastated.

                                Annie

                              keepthefaith11
                              Participant
                                So the pressure check came back normal. Very disappointed since we all thought that this could be the reason why he is deteriorating this way. So they basically said that they are completely discontinuing Keppra to see if that has something to do with it. Otherwise, they say there is nothing they can do. I find it strange that there is nothing else that they could check for. I feel like they are giving up on him. They said themselves that they have never seen a situation like this.

                                I am suspecting it is damage from radiation although everything I read seems to say it should take longer for it to get this horribly bad. Symptoms pretty much started after the third seizure back in November. That would have been only four months after radiation. Could it be a temporary thing that the brain has to recover from? I am kind of thinking it is a combination of things. Maybe the medication for seizures, radiation, the seizures. I am just absolutely devastated and don’t know what to do next. I am kind of feeling I need to get in touch with a neurologist over there at this point. Since now this is not really a cancer issue.

                                Annie

                                  Bubbles
                                  Participant

                                    Oh, Annie.  I am so sorry that this is how things are.  I do think the idea of your dad seeing a neurologist is a very good idea.  Here's what I'm thinking…

                                    WBR can change the brain…obviously.  It can damage the brain (and tumors) generally and the white matter specifically.  That overall damage can make the brain shrink…thereby making the fluid spaces look larger….like there is too much CSF….and lead to "normal pressure hydrocephalus".

                                    Seizures can be a which came first, the chicken or the egg? – kind of thing.  Insults (radiation), infection, increased pressure from bleeding, fluid or swelling….can insult the brain.  The brain may then be triggered to have a seizure.  Seizures can of course, be caused by a more internal source with epilepsy…but that's a whole other thing.  In turn, seizures can cause damage to the brain…leading to a vicious cycle of impairment.  Sometimes meds to control seizures have the side effect of compromising the patient's affect and abilities.  Additionallly, there are tiimes that while the seizure meds control obvious seizures, they are not controlling them completely and the patient is left in a fugue state because all seizures leave the person in what we call a "post ictal" condition after they occur.

                                    Immunotherapy increases the body's immune response in a general, rather than a specific way.  We do it so that our t cells will get off their tookus and attack melanoma.  However, sometimes in their excited state, they attack healthy cells…whether we are talking about the thyroid, the heart or the brain.  Steroids would help a person recover from immunotherapy caused encephalopathy.  Since your dad has been treated with them…it makes it much less likely that this is the etiology of your Dad's condition.

                                    I would definitely try to have him seen by a neurologist.  He cetainly has many factors that have combined to create his condition.  I am sorry you are both dealing with this and hope I have helped rather than complicated things.  Love, c

                                    keepthefaith11
                                    Participant
                                      Thank you so much, you are definitely helping. So what I am wondering is if it would still help to put a shunt in even with normal pressure. I will talk to the neurologist about this. If they see CSF issues I think they would want to look into this further. I have read that you could have normal pressure hydrocephalus which would explain the normal pressure but not normal scan.

                                      I agree there are a lot of factors involved in this mess. He was much more alert today my mom said. Had even eaten both breakfast and lunch and actually told my mom what you wanted for lunch LOL. He’s still at the hospital. She said he was sitting up in bed but not leaning against the pillows and looking around a lot more. I am hoping that discontinuing the anti-seizure meds will bring him back somewhat. This will also allow was to see if he actually is having seizures like you said.

                                      Annie

                                      Bubbles
                                      Participant

                                        So glad he is having a better day!!!  Usually if there is just proportionally more CSF to brain matter with normal flow…a shunt won't help.  BUT!!!  I am NOT a neurologist and that would be a good question for them.  I hope the trend for greater alertness continues!!!  Hang in there.  c

                                        keepthefaith11
                                        Participant
                                          Well, he just had another seizure…so much for that. Off of the meds for 2 days only. This makes me think you are right. He might have been having them all along. And the aftermath is severe fatigue. He has spells everyday where he just stops and stares. That might actually have been a seizure. They are putting him on a different seizure medication.

                                          I feel so defeated. I want to help him so badly but realize there is nothing I can do. Just wonder WHY he is having these with the tumors being smaller.

                                          Sad.

                                          Annie

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