› Forums › General Melanoma Community › Confusion and cognitive decline in Stage 4
- This topic has 4 replies, 3 voices, and was last updated 6 years, 8 months ago by
keepthefaith11.
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- August 23, 2017 at 4:36 pm
I'm not sure if I'm posting this in the correct forum.
Regardless, here it goes.
My 71 year old father was diagnosed with stage 4 melanoma Oct 2015. He first reported a lump in his leg a year earlier but it was missed by GP and oncologist.
December 2015 he started Opvido infusions every 2 weeks. No side effects.
December 2016 he had lymph nodes removed from his groin. Prior to Christmas, no more melanoma was found in his lungs.
He continued his regular Opvido treatment.
May 2017 treatment was stopped upon a recent CAT scan showed the melanoma had spread to abdomen, chest, neck and brain. June 2017 he started decadron. No signifcant side effects.
July 2017 he had one radiation treatment for one side of his brain followed by 5 daily treatments to the other side. The following week he was back on his regular immunotherapy. Immediately he had an adverse reaction, fever, chills, confusion and was brought to the ER. Doctors at small hospital initially misdiagnosed with pneumonia and he started 5 continuous days of various antibiotics. No improvement. His blood oxygen levels continued to decline as low as 67. His oncologist luckily was at that hospital for clinics and saw him. He was immediately started on 3 steroids as there was no infection but he was having an serious adverse reaction.
Since July 26 (day after last immunotherapy treatment). There has been significant changes and decline in my dad. He requires supplemental oxygen at night and most parts of the day. His mental state has sharply declined. He's very confused. Unable to finish his sentences, forgets how to get dressed, is withdrawn and appears depressed. My mom and I brought him back to the hospital regarding his mental state.
It is a small hospital that lacks specialists and we are not getting concrete answers/explanations. Yesterday his MRI showed slight decrease in brain lesions but still some swelling. There is an infectio of some sort but not specified. The doctor says his lip sore is/was shingles (herpes virus).
Again he could not explain the confusion.
side effects of radiation?
steroids?
as the result of the adverse reaction to immunotherapy?
His age …is this what happens to seniors with brain mets?
We are not sure if this is short term or the beginning of his cognitive decline.
Any similar stories? Or possible answers?
many thanks
Vanessa
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- August 26, 2017 at 1:59 pm
Dear Vanessa,Before I share our experience I want to make sure that you know that in no way is it for certain your father’s situation is like my father’s was. We didn’t have a good outcome, but that doesn’t mean you won’t.
How many brain mets does your father have? I am assuming they did whole brain radiation, is that correct?
My dad was diagnosed with stage 4 last summer. He had a seizure in the beginning of July and they found 13 brain Mets ranging from 2 mm to 13 mm in size. He ended up doing two weeks of whole brain radiation. He was treated in Sweden at a research hospital, even so they did not believe gamma knife was appropriate with this amount of disease. I would have to disagree.
Anyway, they went ahead with the radiation and started immunotherapy a couple of months later. Two months after his first seizure he had another one. And two months after that yet another seizure. After the first seizure he started having difficulty with speech but was still walking and living his life. Even after the second seizure he bounced back pretty well. After the third seizure when he had already had four immunotherapy treatments is when things started going horribly wrong. His cognitive state had declined since diagnosis but seemed to start escalating at this point. He was on some heavy-duty anti-seizure meds as well. None of the doctors seem to understand why he was now incapable of walking and his cognitive decline was so severe. The scans back in February showed that the tumors had actually shrunk. This was after he had been on the BRAF drugs for about a month.
The scan also showed a “film” all over his brain. Something they did not know what it could be. I believe with radiation necrosis there should be white spots of dead tissue which he did not have. So I am not so sure that radiation damage was to cause. Especially for your dad, it happening so quickly after radiation, I don’t think that that is the cause. Unless it is a temporary issue that will heal itself. Permanent damage from radiation usually don’t happen until much later after radiation is finished.
I am also not sure immunotherapy had anything to do with it since studies show that mental decline is not one of the severe side effects. I think it is a combination of many things. The age of the patient, the amount of disease, and treatments such as radiation and immunotherapy combined. For my dad I also think the seizures were the ultimate culprit since with each one his cognitive abilities declined severely.
It is possible that this is a temporary issue for your dad after radiation. Are they seeing a huge amount of swelling? They also did a spinal tap on my dad to make sure there was no fluid in the brain. This might be something they could check on your dad as well since it could cause mental decline.
I know firsthand the incredible frustration over this issue and not getting any answers. My dad ended up passing away in March, but not from the actual cancer. He ended up with pneumonia and ultimately died from sepsis. By this time he had been bedridden since November and his body was just shutting down. He was 69.
For us it was just an unfortunate Perfect Storm. Everything that could go wrong did. I wish your dad all the best and will keep him in my prayers.
Annie
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- August 27, 2017 at 12:24 am
Thank you Annie for taking the time to read my post and sharing your story about your dad.
My dad has three small brain METs one on the right and two at the rear. He did not have whole brain radiation but had one radiation treatment for the right and 5 at the rear. My parents have not been exact forthcoming with details. (Good natured attempt to protect their adult children).
My dad remains in the hospital with IV antibiotics and his steroid treatment. Thankfully after a week long drastic decline in his cognitive abilities, yesterday he mysteriously woke up and had bounced back to his near self.
I'm not sure if this will be long lasting but will enjoy these "good" days while they are here.
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- August 27, 2017 at 2:10 pm
I am so glad to hear that he is doing better! And also to hear that he did not have whole brain radiation. With three brain tumors he is dealing with something much different than my dad. I am confident that his mental decline was temporary. Maybe a combination of treatments and the infection. I do believe that with older age comes more complications. Sounds like he is moving in the right direction and I will keep you in my prayers.Annie
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