› Forums › Cutaneous Melanoma Community › Father is Battling Stage IV – Looking for Advice on how to Manage Everything
- This topic has 6 replies, 6 voices, and was last updated 7 years, 3 months ago by
DZnDef.
- Post
-
- February 26, 2018 at 4:49 am
Hi Everyone,
I found this site months ago during a time where it seemed like my dad was at his worst and we weren't really sure how much time we had left. He has made many comebacks since then, but it seems like for every small victory he has, he gains three more setbacks. I have found myself coming back to this site and searching through forums anytime a new punch to the gut comes our way and I have finally decided to actually make post of my own.
Since my dad's diagnosis, my stepmom has been the one that's pretty handled everything. My dad has never been one to talk about his emotions or any serious matters really so my brother and I have been really dependent on our stepmom to relay all information to us. Communication hasn't always been the easiest in our family, especially for my brother and I when it comes to our dad but as of lately I've been feeling this responsibility that, as the oldest of his two kids and the one who lives closest, that I should be more involvded. Maybe I've just been takng advantage of the fact my stepmom has been taking care of things because I was trying to avoid facing reality but I've noticed more and more the emotonal toll it's taking on her and I'm not sure it's really helping with her attitude when it comes to trying to stay optimistic for my dad. I've also noticed that my dad responds much differently with me and my encouragement than he does with her.
A little background on his history (it's not as in depth as some of the explainations I've seen here, but like I've said, I'm just starting to get a better understanding of his diagnosis, so please bare with me!):
– Spring 2013 he was diagnosed with stage 2b when they found it on his back. At the time interferon was the treatment option available but my dad and stepmom chose not to go that route and instead had the lymph nodes removed? After that procedure, he was cancer free untl 2016.
– Jan. 2016 he was preparing to have a knee replacement, however, the ct scan that was done pre-op for the knee replacement, actually detected that the melanoma had came back but this time in his lungs, making him stage IV. He decided to go the immunotherapy route and began taking Keytruda.
– Fall 2016 melanoma was found on his forearm and he had mohs surgery to have it removed.
– Early 2017 they were told that the keytruda was no longer working and he tried Opdivo but that made him very sick so he stopped taking that after one treatment.
– March 2017 he met with a melanoma specialist and got approved for a clinical trial (i believe the trial was Opdivo+Yervoy and Keytruda??). He did one treatment but the side effects were too much and actually sent him ICU for about a week during the summer. the trial did have some what of an impact as parts of the cancer had actually shrank but the after math made my dad very weak and he wasn't able to continue with the trial.
– About two weeks ago he had a bump on the back of his head that came back positive for melanoma and now he is wanting to have the mohs surgery again.
My dad hasn't been on any treatment since July 2017. When I've asked my stepmom about it, she has said that he is too weak to go on another trial but I feel like there's got to be something he can do? He has definitely lost a lot of weight and his strength is no where close to where it used to be, but i feel like the ICU experience may have scared him?
On top of everything, for about the past 6 months or so my dad has been dealing with sciatic nerve pain in his back which I feel like has been a major blow to his quality of life. He's stubborn and hates the idea of using a walker or cane for assistance and as of late, his days consist of him just sittng around watching tv. He just got a second epidural done to help relieve his pain so I am hoping this will get him up and moving again.
I apologize for rambling, this is the first time I have really shared any of this with people other than close family members and friends and sharing this in a place where I know there are others who can relate has made me feel more at peace.
He just had a ct scan done as part of his 3-month check up and they get the results back on tuesday. My stepmom invited me to go if I wanted to. Should I just be there in support or are there questions I should be asking??
I'm not sure what I'm looking for here, I think I just wanted to see if there was anyone out there that could give me some kind of advice or pep talk of what all I should be doing as his daughter to make sure he stays as encouraged and supported as possible. It makes me so sad seeing him depressed at times, but like I said earlier, I really feel like he responds to me in a different manner than he does with my stepmom and if there is anything I can do to help encourage him to stay motivated to keep fighting, I'm all ears!!
thank you to those who took time to read through my lengthy, first post 🙂 and thank you to those who share your stories – they have provided me with so much information and perspective; It's very much appreciated.
– Laura
- Replies
-
-
- February 26, 2018 at 7:36 am
Hi Laura,
Completely understand your concern as I am a patient’s daughter too. Please have faith, sometimes immunotherapy takes longer time to respond. Is your father BRAF positive? Because you could use BRAF inhibitors and see how he tolerates them and then probably try immunotherapy again. Good luck!-
- February 28, 2018 at 5:15 pm
thank you for your reply! We met with his oncologist yesterday and unfortunately the news wasn't the best. the cancer has grown in his lungs and my dad also found another lump by his jaw, maybe the size of a small marble. the cancer growing wasn't a surprise, my dad has not been on any treatment since July. I did ask about his BRAF status (won't lie, I had to research what that was) and the oncologist said that is was negative. My stepmom asked about his time frame and we were told that if it kept growing and if there wasn't any treatment options, then 6 months or less. that was a tough one to hear coming directly from the oncologist. However, this time a year ago, they told him he had 6 months to a year and over the sumemr when he was in ICU one doctor mentioned hospice…and he's still fighting!
this was my first time going to an appointment and meeting the oncologist and I didn't feel like he was very encouraging. He just kept saying how the results were really bad, gave a few growth numbers and said he was call the melanoma specialist my dad worked with during his clinical trial. When my dad asked if Moh's surgery for the melanoma on his head was worth it, it almost felt like the oncologist was trying to talk him out of it – "I mean you could, but ultimately the cancer is in your lungs." It just seemed like there was much hope given. Not sure if I'm getting that vibe because of frustration or if others have gotten those vibes from their oncologists? I really feel like he should try getting a second opinion but my parents are very much in the mindset that this is the person they have worked with from the beginning.
-
- February 26, 2018 at 1:15 pm
Hi Laura – I would definitely go to the upcoming appointment so you can hear firsthand what the status is and what options may exist. You didn't mention your dad's BRAF status so make sure to ask that question. Your dad may have a good response to this treatment which will allow him to regain his strength for future trials or treatment.
Ann
-
- February 26, 2018 at 11:37 pm
Yes-Go. Even if it is just to sit in silence with him and his wife. If it is possible, try and email your question (about the BRAF mutation) ahead of time. And see if he can get a palliative care consult either as part of his clinical care appointment-no one should have to live with "can't-get-out-of-the-chair" pain. A palliative specialist can help with that.
-
- February 28, 2018 at 2:08 am
Laura, my husband is fighting melanoma, has had two back surgeries, and also suffers from sciatica. On any given day, I can tell you that his biggest gripe is the sciatica, not the cancer. After trying a lot of other things, he went to an accupunturist who has given him tremendous relief. Perhaps if you can find a way to find him pain relief for the sciatica he will bounce back for the melanoma fight. I wish you the best of luck, Carol
-
- March 2, 2018 at 7:29 pm
Hello Laura, sorry with what you are going through but very glad you found this site. I lost my father back in 2010 due to prostate cancer and I just want to emphasize a few things to you. It was extremely difficult to watch my father go through that. But at the same time, it was very important that I visited with him frequently. He was the best Dad and I remember him giving some frequent advice about raising kids. He said the only thing of value you can give your kids is your time. It took me a while to realize that this is the single most valuable thing we can give to anyone. While your father certainly knows you care, taking time from other things in your life to visit with him will make a strong impact. Do your best not to cry in front of him if you can manage that. Also, if you can coordinate with your stepmom to give her a break so she can run errands, go to a spa or take a bath that would be a huge help for her. She needs to re-charge so she can be at her best when helping your father. This is no doubt tough on her and she may be overwhelmed by the responsibility. I would also encourage you to attend any appointments you can manage even if you do not participate much. It will mean a lot to your father and your stepmom will likely appreciate having an extra set of ears. People have been outperforming their prognosis for years lately with this disease. Everyone is different, so there is no telling with a particular person. I hope everything goes well going forward.
Cheers!
Maggie
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.