› Forums › General Melanoma Community › My dad’s story
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MelMel.
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- January 23, 2019 at 10:05 am
Hello,
I have been researching the internet for months now, and feel maybe it is time to post my dad's story. My dad is 62, and I don't recall him ever taking Advil nevermind going to see a doctor. He started acting very strange in the beginning of August this past summer. Forgetting things, distant, strange mood…just not himself at all. I had a bad feeling and told my mom to take him to the emergency room when it got worse the second week. Long story short, we found out that night he has tumors in his lungs and his brain. A few biopsies later, he has stage IV metatastic melanoma with the BRAF mutation. Our world has gone completely upside down. My father is the rock in my family, and one of the best men in this world.
When they found it on August 11th, he had 2 tumors in his lungs and 6 in his brain, but they never found the site the melanoma began. I found out after the fact that my uncles and grandfather on my dad's side have had early stages of melanoma that were caught and treated. The first plan of action was a craniotomy early September and removed 4 large tumors, leaving two of the smaller ones. He recovered from surgery well, but had a set back with pneumonia that put him in the ICU for 12 days. It was there they discovered a blood clot in his leg, and then the blood thinners depicted bleeding ulcers so they had to put in a filter for the blood clot and cease the blood thinners. He is on steroids, anti-seizure medications, antibiotics…more pills that I have ever seen my dad even look at.
They did another MRI while he was in the hospital and discovered just one month after surgery he now had inumerable tumor growth all over his brain. This was October 6th. He started on the Mekinist and Tafinlar combo, which started to work well. The MRI in December showed the disease as stable and the tumors as stable or smaller. Two of them had grown a little, but some had shrunk or disappeared. He gained weight and strength back and we were very hopeful. The combo of targeted therapy shrunk the tumors in his lungs considerably. We were really looking forward to the January MRI. However, I could tell it was not going to be good based on how his eyes changed again and he is starting to go backwards with his cognitive/mental status and behaviors. We got the news last week that this MRI showed many more new tumors growing in every area. the final result was progression of disease. The medications are not working in his brain. He had to stop taking them, and we start whole brain radiation today for 10 days. After that, there might be a chance of taking the combo Ipilimumab and Nivolumab but his oncologist says those are very dangerous and have a 1 in 10 chance of taking his life before the cancer does.
At this point, having so many tumors in his brain groing agressively, I am not sure how much time he has left. Doctors seem to be amazed he is still with us as it is, and i have heard terms such as 2 to 3 weeks if we don't do the radiation. I know no one can tell me how much time we have, but for some reason I feel it is important to try and find out. Except all I can do is treasure every day that we do have.
If anyone has any insight, advice, words…I think I just needed to type it all out and try to focus. Thank you for listening.
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- January 23, 2019 at 1:12 pm
Hello,My Dad past away two years ago on January 31st actually. I am perfectly okay with really getting into exactly how it happened if you are wanting in depth experience. I know everyone is different, but when i was going through it it helped me to hear personal stories. I know that’s how I was, and it actually helps me to talk about it now so if you have any questions about any of it feel free to message me. I was his caregiver so I was there every minute of the day.
How does he seem? Is he bed bound, is he talking? Remember everyone? Able to go to the restroom? Falling? Is he on Hospice yet? Sorry for all the questions, just trying to get an idea of where he would be, at least from what I’ve seen. Once again, it’s hard to say since everyone is different.
Sending you and your family so much love and strength. <3
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- January 24, 2019 at 5:29 am
I am so sorry to hear about your dad. I would certainly appreciate hearing your and his experience. If it is not too difficult. As hard as it is to talk about it, I think I need to. I am not his sole caregiver, but I live 5 minutes away and am there daily as well as take him to every drs appt, help manage medications, and help my mom. Back in October when he had pneumonia he was not able to stand without help, I had to lift him to his walker and he was asleep quite often and lost so much weight and muscle mass. Back then we thought the end was near. Then we started the targeted therapy and he gained weight and strength back and you would almost not know by looking at him, until recently right before ths last MRI. He is starting to see shadows and hear whispers. He struggles finding the words for things and gets frustrated when he can't think of what he is trying to say. He is quite forgetful and starting to zone out. He remembers everyone, he still gets around but he is starting to slow down and lose balance again. He is definitely going backwards from where he was month ago. He is getting more tired and sleeping more. He is not on hospice, as that means no more treatment and I am not sure we are at that point just yet. If I think of anything else, I will get back to you. I appreciate your help and support and may your dad rest in peace I am so sorry.
Amy
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- January 23, 2019 at 1:40 pm
It is true that the ipi/nivo has side effects but mortality rate is NOT EVEN CLOSE to 10%. Nivo alone is almost as effective as the combo with drastically fewer side effects. Many studies have been posted here that radiation COMBINED with immunotherapy is more effective than alone. I am so sorry your father, you and your family are suffering right now. I hope he is being treated by a melanoma oncologist rather than a general oncologist. Prayers for you all.-
- January 24, 2019 at 5:36 am
She is and works with one of the best hospitals in the world so we haven't felt the need to check elsewhere. Perhaps I got the percentage wrong or it could be due to his age, disease progression, other physcial health aspects that make it dangerous for him to try, but doesn't mean we can't. But I have read about that combo and it seems pretty scary nonetheless. The targeted therapy he was taking cannot be used with radiation and had to be stopped. I have also heard that melanoma is more resistant to radiation. We will see what happens in 10 days but it seems as though anything we do is pallative at this point. Thank you very much for insight and prayers.
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- January 23, 2019 at 8:36 pm
Hi Ness – I'm so sorry that you, your father and family are going through this and I'm sending all of you as many good thoughts as possible!!
Echoing Michelle here to argue the case for the combo or at least Nivo once the radiation is completed, particularly as your father showed a good response to targeted therapy (the Taf/Mek). As well, questioning if the oncologist is a mel specialist … if not, perhaps he/she would be willing to consult with one. Regardless, you are arming yourself with information and that's important!!!
My sister's situation was similar in some ways to your father's. She's Braf+, also responded well to Taf/Mek but couldn't stay on it due to an allergic reaction. She started ipi/nivo combo and had two when brain mets were found. They didn't tell us at that time that she had hundreds of them, they talked more about the larger ones, particularly one that was bleeding. Ultimately, the only option she had for survival was whole brain radiation … it sounds to me like this is where your father is at right now. Forgive me for sounding so blunt … (I've been where you are)
You say your dad has so far amazed his doctors – may this continue to be the case!!! At 62, he is NOT "old" and, as you've said, has had reasonably good health until now. So did my sister and I must tell you that she is NED today, a miracle as far as we are concerned!!
But I believe with all certainty that this miracle is due to the combination of radiation and immunotherapy – the synergy produced by both treatments taking place in close proximity, otherwise known as the abscopal effect.
If your dad comes through the radiation OK (again, being blunt here but the radiation brings dangers of its own), I would be pushing all of his doctors to begin immunotherapy asap!! He has already shown them he is a responder – he may just be a heck of a fighter too!!
Please take care – my thoughts are with you!!
Barb
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- January 24, 2019 at 5:41 am
Thank you very much I am so happy for your sister that is very promising also! His oncologist is not just a melanoma oncologist but has frequently consulted with one at Boston Mass General and her whole team is afiliated with Mass General, we are only a half hour away. His doctor already started the process of getting the immunotherapy combo and he has a ct scan of his lungs again right after radiation and we meet with her again even if it sounds so scary…not much can be worse than this right? Thank you, I do know he is a fighter 🙂
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- January 23, 2019 at 9:55 pm
I Ness, sorry for your situation, really hard to play doc. on such a serious situation, just wanted to share with you some of the new thinking with brain mets that were reported on at this years ASCO meetings. Best Wishes!!!Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/managing-brain-mets-in-melanoma
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- January 23, 2019 at 10:44 pm
After viewing this video, I think it would be best to try combo Ipilimumab and Nivolumab immunotherapy.
You wrote "his oncologist says those are very dangerous and have a 1 in 10 chance of taking his life before the cancer does.” The combo truly is very dangerous. Since your father is 62 years old and in poor condition, the “1 in 10 chance of taking his life before the cancer does” is reasonable. However, there is a greater than 1 in 10 chance of melanoma killing him.
I was 10 years older than your father is, when I began Ipilimumab + Nivolumab immunotherapy in April 2016.
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- January 24, 2019 at 5:47 am
You make a very good point, the melanoma is worse chances than any medicines I am sure. Its just if it only has a short time left, I don't want it to be spent completely sick and exhausted either. However I can see that no treatment at all means he declines quickly either way. Thank you for your advice and best of luck to you.
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- January 24, 2019 at 2:18 am
Not sure your dad qualifies as "elderly"…but here's a couple of reports that demonstrates those peeps can tolerate immunotherapy as well as anybody else:
Also, we have learned that radiation COMBINED with immunotherapy has better efficacy than either alone. Here are a zillion reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy
Wishing you and your dad my best. Celeste
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- January 24, 2019 at 5:54 am
Thank you for the information and insight. I gether it would be considered concurrent, since we are meeting with her again immediately following the 10 day radiation and she already started the processing of getting the combo perscriptions approved. I will keep my fingers crossed and hope he tolerates it as well as he did the targeted therapy. I was just hoping that combo would work for longer than a month 🙁 Thank you again.
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- January 24, 2019 at 7:11 pm
Hi all.
Just chiming in to say that my 86 year old mom completed 18+ months of pembro at Mass. General along with T-Vek injections and has been free and clear for 8 months now. She tolerated the treatment extremely well. Keep fighting the fight. I wish everone the very best.
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