Melanoma Caregivers

Up Late

Took my sister to her 3 month post scan consult today and though I know the path of melanoma and her particularly aggressive tumors was still shocked to hear the news that her liver tumors are at 8 and 9 centimeters and it is continuing to spread and grow despite the clinical trials and drugs. She had a ruptured brain lesion not long ago and has lost some of her peripheral vision but until just a couple of weeks ago was feeling well despite all of it. We are now downtown in a hotel after getting a referral today and consult at another hospital at 8am tomorrow morning for another clinical trial. My sister now lives with our parents and it is quite far from the hospital so staying Downtown was easiest.

I picked up food and bought us jammies and as I watch her sleep I can’t imagine what she must be feeling It is after midnight and I can’t sleep all I want to do is cry. Though there may be a clinical trial that could slow down the inevitable we know that hope and time are dwindling In many ways we are lucky, we are a very close family and we have been spending time together taking a large group trip last summer to spend time together our great palliative care person spoke to both of us today and I was happy that she was able to have a substantive conversation with my sister and will continue to reach out to her

Thank you for the indulgence I needed to talk or text and everyone is asleep and I am having trouble keeping all the emotions in and I dont want to wake my sister. I wish I could fix this and make it better, I wish I had the words to ease my sisters fears, I wish that they find a cure, I wish I had more time - just more time

Good night

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My heart goes out to you and your sister and family. The fear is so real and also the frustration of not being able to fix things. Your sister is lucky to have you and your close family. Prayers for you and her as you continue the journey.

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Thank you, it was a late night and long day after and I so appreciate your response.

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Hello Bigsister3,

Your post really touched me. First I noticed your screen name - I am one of three very close sisters so I noticed it. For me, it is my 27 year old son that is facing the inevitable. The night time is the hardest as my thoughts also race and my emotions bubble up when he is not aware. More time is all we have been working towards for a year now. My son just started is SECOND round of whole brain radiation yesterday. 10 treatments planned. Terrifying.

I too had a rough night last night. I wish we could have known and talked to each other then. I have finally accepted that there is very little in our control at this point. But I also know that we are blessed to have this extra time. I also have learned that it is OK to have nothing brilliant to say at times. Just sitting there with your sister will be enough.

Hugs to you and to your sister. One day at a time.

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I am so sorry about your son. My oldest son is also 27 and I couldn’t imagine. I now panic about them and their doctors appointments. I know they think I am now crazy. Hugs to all of you. We should have a little post midnight text group because it is the hardest time especially when you are trying to be strong for everyone around you. Right now we are trying to find the little things to laugh about.

Good luck to you and all my prayers for you and your family Please keep us posted

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My son too had 2 rounds of wbr plus stereotactic radiation to 3 tumors in his brain. First it was a round of wbr then a tumor ruptured and he had emergency brain surgery and came through with flying colors. He wasn’t supposed to walk again, but walked out of the hospital the next day. We thought for sure with that miracle he would beat thus thing!

He started a targeted therapy that didn’t pass the brain barrier. He went from 3 new brain Mets at the end of June (2015) to over 40 just 30 days later. We had to do hbr again despite the probability of brain damage. Also lots of steroids which reduced the brain swelling, but may have lessened the efficacy of the ketruda he had then started.

I have since lost a second son to melanoma. I BELIEVE they are still with me. I get signs from them that they are well and happy and pain free and with my mom and dad and all my other loved ones I have lost.

Spend every precious minute with them! Take pictures and videos!

Blessings💜

Sarah

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Dear Sarah,

Words can't express how sorry I am for your loss. If I could I would grab you and hug you and probably cry my heart out with you. I hope that you are surrounded by loving friends and family and know that though none of us on this site know each other, we are all connected and carry each other in our hearts.

As my family went through cancer with my sister when she was young and survived, you start to believe that we can do this and beat it and the terrible truth is that melanoma is just a horrific disease and it doesn't discriminate and it can impact multiple family members. I hope that I can have the strength that you have and pull myself together a little better this week. A dear friend asked me if I am prepared and I am not.

We took a group trip last year and we are all getting together in a few weeks to watch the video of all the photos and have a party. Thank you for responding and I hope that in your journey you continue to find peace and strength.

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Sarah,

You are the first person I have found with experience with 2 rounds of wbr. Can you tell me more about your son''s experience? If not too painful. My son just had his third treatment out of 10 with no effects that I can see so far. I know they will occur. Did the second round help to buy more time for your son? Did it affect him cognitively as much as the first, more, less,.etc? I know the long term outlook is bleak but am very unsure about what I should expect currently. If these questions are too obtrusive or difficult for you to address, please don't do it and accept my apologies.

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My heart aches for you and your son. You can ask me anything. I actually wrote a long explanation but my phone died or I lost it or something. The radiologist has said another round would be over the safe limit so maybe he had 2 rounds That month. I know it was to buy time. He was on steroids to keep his brain from swelling. He had an unstable gate and some dementia but it’s hard to say what was from what- how much dementia was from the brain swelling due to all the brain mets. Because it started before he had had any radiation. ( other than the initial round in March and the stereotactic in May.

I know that he was so much better after- like his old self. Night and day. But the dementia came back and got progressively worse. So did his gate. He had a lot of trouble walking. That’s why I think we may have done more because he didn’t improve as dramatically. Same with the steroids. Every time he got better, but not AS better, and it was shorter lived. I think we did go in for a third round and that’s when the radiologist said there would be residual effects - cognitive impairment that could take up to 6 months to see.

I was Arthur’s primary caregiver. He was 24 and had moved back home a few years before. I don’t know how much you want to know. It’s painful. It wasn’t pretty. I remember his friend saying he wasn’t texting him back. Then he stopped watching a favorite tv show. I realized he couldn’t follow along. Then I realized he couldn’t text or use social media anymore- hadn’t been able too. I realize now he probably quit playing video games before that, even. It must have been so scary and lonely. He was a private young man and was always in his room ( he was a college student and worked). So he was alone up in his room a great deal of time. He always had been. It never occurred to me that he wasn’t on FB, texting... I’m not even sure he wasn’t- but in hindsight I expect he couldn’t. If this happens, please let his friends know. I’m sorry I know this is heartbreaking, but I would want someone to be blunt with me. I would spend every minute with him and have as many people see him as you can.

Sending so much love💜💕💕💕💕

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thank you for this explicit sharing. It's helpful to me.

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Thank you for your reply. It is so hard to read and I am only imagining at this point how hard it must be for you to share this. I thank you so much. Information helps with my anxiety - even negative info is better than this not knowing.

I am my son's caretaker as well and he is living with me. I am trying to work for a few days a week right now but can take leave when I feel I should. I think me working makes him worry less but as soon as I think I should I will stop. My son spends most of the day on the sofa with us in the family room rather than by himself and I am thankful for that. His short term memory is the worst so far. I just wish they could remain clear minded and cognitively functional until the end but that isn't typical with such brain disease.

Thanks again for replying. Just knowing I am not the only one who has faced this is helpful for some reason.

So sorry for your heartache and loss.

Hugs to you.

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BigSister3,

What a blessing you are as a sister.

Three weeks ago I lost my brother unexpectedly. We don't know the cause of his death. And the ache in my heart is so large a truck could go through it. I empathize with your commitment and love for your sister, and the courage to continue to explore choices with a palliative care partnership

In my melanoma caregiver world my husband has had a new outbreak and today we go for another wide excision. Next week we have a second opinon consultation. A day at a time, we continue. I stand with you.

Missy

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Dear Missy,

I’m so sorry for the loss of your brother. My thoughts and prayers are with you at this difficult time.💜

Sarah

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thank you Sarah. I deeply appreciate your outreach and prayers.

missy

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Dear Missy,

I am so sorry for your loss. I grapple with the fear of losing my sister and I can’t imagine how you must feel. My thoughts are with you and your family. My truly deepest condolences

Today we go to hear about my sisters third brain scan to see if she is eligible for another clinical trial at a different hospital. A day at a Time and a scan at a time.

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Bigsister3,

We are also very much in that one day at a time space. Looks like we need to stop the Keytruda because the 2 tumors removed at a recurrence site yesterday showed no lymphocyte activity, so my husband's body couldn't tell it was cancer in spite of the Keytruda heavily onboard. so time to switch treatments.

We have a brain scan scheduled for Monday and a second opinon consult next Thursday that we will couple with our current provider tumor board/ all staff consultation from yesterday. Feeling pretty wiped out today between all the emotion and technical workings of this past month. We also had a sweet childhood friend of our daughters who died from an opiate drug overdose within a week of my brother's death. Taylor had been in long term recovery and yet addiction caught him again. We go to his memorial service this weekend.

I'm trying, as all of us do, to manage my anxiety and take things slowly. I'm down to sending group emails/ texts to our close family and friends rather than calling folks individually because I just can't tolerate the emotional interactions. I've been to our church and sang in the choir Sunday and Monday for MLK Day because music is restorative. When someone asks if they can do something to help I say yes, and give an explicit thing they can do: pray, bring a meal, write my mother, be the point of contact for a memorial gathering in March for my brother, look up flights, drive to an appointment. My office has been outstanding in flexing my time whenever and however I need it, for which I'm very grateful.

My husband and I have a band trio and haven't practiced in a month due to all that's been going on, so I called a Sunday afternoon rehearsal at our house to get a return to a normal schedule, and because I know that so much good and positive healing will happen when we practice; it always works that way for us.

And now I'm calling a work time out and going to curl up with our cat, read a chapter in a book, and take a nap.

One day at a time.

Missy

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Missy you are an inspiration. Singing is a form of prayer, too!💜

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I couldn't agree more and thank you for the advice when people ask to help. Friends and family are all asking to help and I am getting them to plan different things with my sister, so thank you. I think they feel better doing something and it will make my sister happy. It is hard to actually tell people what you need but you are so right, they want to help and are happy to do so.

Thanks again for your strength and openness, this site has helped me enormously. Thanks to all of you contributing and listening.

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