› Forums › General Melanoma Community › Help for my Dad
- This topic has 9 replies, 5 voices, and was last updated 7 years, 1 month ago by
kim1224.
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- March 15, 2017 at 6:23 pm
Hi Everyone,
I am wondering if anyone could offer any help/advice about my dad. It has been a crazy rollercoaster but I will try to keep it as brief as possible.
September – woke up with a bad headache, went to ER. Two days later diagnosed with brain and lung mets. No primary was ever found.
October – had surgery to remove two larger brain tumors – all went well with the surgery. A few days later he suffered a partial seizure in left arm – Keppra increased. Few days after that finger twitching – also put on Vimpat as precaution. Neuro never determined if that was a seizure or not. Received 10 wbrt treatments (I have been very upset about this since day one due to everything I have heard/read about it on here and other places) I believe we were told because of the size of the larger tumors/tumor bed targeted wouldn't be an option? Never made sense to me – especially coming from a reputable hospital but my parents accepted that and that's what was done…
November – During wbrt he started combo infusion. Immediately after the second one he started having trouble walking and had lower back pain. Admitted to hospital. Liver elevated to dangerously high levels. Put on high dose steroids and Cellcept. Numbers came back down. Confusion set in, right arm limp, left arm stiffening. EEGs showed no seizure activity. Drs said it could be meningitis or encephalitis from immuno or lmd.
December – two spinal taps negative for lmd, sent to rehab to strengthen up to resume treatment, went back to hospital after almost two weeks because liver was elevated again, steroids increased
He has remained in the hospital since then and hasn't gotten worse but hasn't improved much either. The most recent ct scan of the brain shows progression compared with scan in December of approx 5 mm in some lesions and one that has decreased. No new ones were noted.
On top of this, he has been on high doses of two anti seizure meds with no seizure activity except for the one October. He has also been on a number of antipsychotics that have not seemed to help, but maybe even made his mental confusion worse at time or have their own whole set of possible side effects. We have asked for him to be tapered off anti seizures or only have just one but that has not happened. For us, it only adds to the confusion of what is causing what.
We have never been given any definite answers just that they have not seen a case like this before and are not really sure what the cause is. They are guessing it is either from autoimmune encephalitis and/or brain damage from doing radiation and immuno at the same time. There was talk of rehab because they say they want him to strengthen before resuming treatment, but now we are hearing there is nothing else they can do.
We find this hard to believe because although he has not improved with his symptoms, the cancer itself has remined pretty stable up until this most recent scan. We are beyond frustrated with the lack of answers at this point and the feeling that the doctors are just giving up instead of exploring other options. Any advice or insight would be greatly appreciated.
Kim
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- March 15, 2017 at 6:40 pm
I'm so sorry for all that is happening, Kim. Is your father being treated by a melanoma specialist? With all of the new treatments that are around and coming on board, a general oncologist simply cannot keep up.
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- March 15, 2017 at 9:02 pm
He is being treated by a melanoma specialist at what is supposed to be a very reputable cancer hospital. So is that enough to just take their word for it or accept their lack of answers for us? I can't help but wonder if a new set eyes could see something they're not but I don't want to be naive either. I don't know if it's too far gone at this point.
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- March 15, 2017 at 10:43 pm
If you don't mind my asking, what hospital and what doctor?
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- March 16, 2017 at 9:59 am
Hi Kim,
The crazy huge grocery bag of pills they sent us home with after biochemo was insane!! The antipsychotic drugs were miserable. My son refused them after a day or two. One in particular made him "dark" and changed his personality completely! There were so many I could not tell if he was getting better. We are just now battling brain Mets and starting radiation so I can't say. But my son strongly believes that the patient/caregivers need to do what feels right 100%. Jake has lived WAY longer than his dr or his family ever thought he would:)
Listen to your dr, do your research, and ultimately find what works for him! Everyone's body responds differently.
Goid luck,
kerri
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- March 16, 2017 at 12:16 pm
Kim,I am deeply sorry to hear about the developments with your dad. I know that you know my dad suffered a similar struggle.
I really feel and so they do the doctors that my dad’s deteriorating situation was a combination of things. I think the seizures had a huge part of it because we each one he got much worse. He had three pretty big ones but even after that point I really feel she continued to have minor seizures. He would all of a sudden freeze and just stare, and other times he would get a bit of shaking. He was on heavy-duty anti-seizure medication so I think it masked most of the symptoms. Still, I feel it just kept happening and that it’s what damaged his brain and made him so very confused and tired. We know that after each major seizure he would be tired and sleeping for a few days. It seems some people can have brain tumors with no seizure activity, My dad was absolutely not one of them.
It seems the whole brain radiation also might have had part of it. Although most of any potential damage usually does not show up until at least after a year and is a more slower process. From everything I have been reading it seems a little bit of a stretch that the radiation would be the sole cause of the damage. Also the timing of his deterioration match up much better with the seizure activity. I do know the radiation cause lots of swelling which in turn probably lead to more seizures. So it is a vicious cycle.
My dad was on two separate anti-seizure meds. Keppra and Ergenyl. After the third major seizure back in November they increased the Keppra to 2000 milligrams the day. This gave him hallucinations so they brought it down to 750 mg. About two weeks after the third major seizure and after they increased the anti-seizure meds he had a really hard time walking and started developing urinary incontinence. Around this time he had his fifth Opdivo infusion. After that infusion he got diarrhea and they took him off of the immunotherapy treatments. He was hospitalized and never walked after that. It seems to have been going downhill really quickly after the last infusion. This was back in late November.
In February they took him off of Keppra all together to see if that could be what made him so tired. I really did not make a difference. He ended up with another very noticeable seizure though.
They did a spinal tap to check for issues in the spinal fluid, for example cancer. Came back negative. They also wanted to check for pressure and the Brain. There was none. We were kind of hoping that would have been the issue so they could put in a shaft.
The MRI did show something strange in the white matter of the brain. Not lesions or calcifications like you would see in dementia but more of what they called a “film” surrounding the whole brain. Not sure what that means. I had planned for them to send his two different hospitals to see if someone could figure it out. But we didn’t have time.
They also did an EEG to check for brain functioning and it came back slightly slower but nothing alarming.
Here are my suggestions for you.
1. Ask about doing a spinal tap so they can check for pressure in the brain. That can cause severe confusion and physical issues with walking and incontinence.
2. Ask about what the MRI shows as far as the white matter.
3. Talk to them about adjusting medication. In a lot of cases that could be what’s causing the issues. There are many different kinds of anti-seizure meds and some might work better than others for people. I have a friend here who’s grandmother was on one kind and was completely confused and slept all day. They switched her and she is now up and about. It is definitely worth a try.
4. Ask if they can do an EEG to see brain functioning.
I feel with my dad everything went against him. And everything that could have gone wrong did. I was pretty much the “perfect storm.”
I will be praying for your dad too get better. I know this is so hard. I felt like we were all being tortured daily not knowing what was happening. Especially with my dad’s cancer actually getting better. It made no sense and that was so hard to deal with.
Thinking of you.
Annie
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- March 17, 2017 at 2:58 pm
Thanks for replying Annie, when you have so much going on right now. I appreciate your help and advice. We were able to get in contact with another doctor at a different hospital, so we're hoping a new set of eyes might solve this mystery. You're so right about being tortured and nothing making sense. It is only adding to this nightmare.
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