Nervous night

[bearkat]

Since I last posted doc stopped keytruda due to progression of disease. We were devastated. Dr. offered chemo as only last possibility. Said it might buy time. My son decided to do it and has gotten thru 3 cycles surprisingly well. Today he had another round of scans and we see dr. tomorrow to get results. Anxiety is VERY high here tonight. He has said he doesn't want to go to see doc. Doesn't want to be in dr. office when he learns there is nothing else to be done. I told him to come to appointment and if he doesn't want to go back into room I will go for him. I don't know how much more of this kind of stress either of us can take. Sorry to dump here, needing a place to vent. Has anyone on here ever been told by Dr that there is nothing else to do? If ao, how did you handle it with your loved one?

[missyrand Ambassador]

Bearkat

You are heavy on my heart this morning. I hear your fear and anxiety.

Cancer like melanoma can get to a point that it overwhelms the body. What I hear you and your son facing is how to change the conversation to focus that although you hope for more time together conversation needs to include that time together is less certain now so let’s talk about how to deal with that limitation. The medical treatment contract may need to change to focus on palliative care which has different questions like:

What matters to you in terms of how your day and time is spent? Let’s structure our plans for your life around that rather than only treatment

How involved do you want to be with treatment decisions?

How much symptom management do you want?

Who else or what kind of support do you and your family want at this point?

When treatment for cure has been exhausted, how much additional treatment intervention do you want? What time and side effects are not worth it to you?

Would you like a nurse, doctor, oncology therapist, grief therapist, attorney, faith chaplain to talk with you/ your family about how to engage in support, choice making, symptom management, living arrangements, knowing what to expect?

There is helpful review of palliative care, which has overlap but is different than hospice care, on the National Cancer Institute in the section on advanced cancer. You might find the sections for planning for the caregiver helpful. You might also want to consider talking with the doc about hospice, which can be renewed every 6 months by the doc.

From what I see putting palliative care and or hospice care activated different technical resources and insurance options.

Www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning#talking-loved-one

I don’t know how helpful this will be Bearkat. You are in my prayers today

Missy

[bearkat in reply to missyrand]

Thank you Missy. I really appreciate your reply. I have read it several times. I probably shouldn't have posted the other night. I was having one of those very difficult moments and had no one to express it with. My son's scans showed his tumors were shrinking or remaining stable except for one growing in his brain. Overall relatively good news. Will try to continue chemo for three more rounds if he can tolerate it.

Because Dr has said this is it, no more treatment options available, I feel like there may be no reason to do more scans which will only cause such high anxiety again. Will continue to investigate this.

Once chemo is over, will probably inquire about palliative care. Thanks so much for your support. It really helped me thru a tough time.

[Crycleo]

Even if the news is bad, there is always hope. Hope for a new clinical trial to emerge, hope to be one of the lucky ones who will spontaneously recover. Look into alternative treatments at this point. They may not help, but they may help! Who knows? It will give your dome something to hold onto. I am not saying to remain in denial and ignore the news, but as the days pass, it is important to do those things that are important to you son in the here and now. My son was not offered this information. He wanted to marry his fiance and make her the beneficiary of his business, but because he was never told his prognosis he died before they could marry. The decision was made by the doctor who had no right to make that decision.

I know the hardest part for you son is the fear. Try to keep some hope, however small, in the picture. If you have a palliative care department ask for a referral to it, even if it's at a different hospital. They are medical professionals who help patients deal with devastating prognosises, and they also manage pain. Do not let anyone push your son into hospice before he is ready. I'd give palliative care a try first. You are both in my thoughts and prayers. LH

[bearkat in reply to Crycleo]

Thank you for your reply. It is really helpful to get your support. News was actually relatively positive. All tumors shrinking or remaining stable except for one that is growing in his brain. It is concerning but overall good results. He will try to get in 3 more cycles of chemo and then we will be in a wait and see pattern.

We know this is just buying time but time is the most precious thing we have.

I am shocked that your son's doctors didn't keep him more informed. My son's doctor say's she assesses which patient seem to want the info and which ones prefer not to know..I am so sorry for your loss and also sorry your son wasn't able to marry his fiance. So unfair.

I think palliative care is a good suggestion and we will probably pursue it when he finishes the remaining cycle of chemo.

Again, thanks for replying to my rant. Knowing someone would care enough to take the time to reply is an incredible feeling.

[missyrand Ambassador]

Bearkat, that’s why we are all here.

Take care of yourself even as you care for your son.

Missy

[Saumann]

Thinking of you and your son💜💕💕💕

[Vflowers]

My son's oncologist never said that to us. Even when we were signing the hospice paperwork. We we're told if things improved, he would actually be willing to try the last round of opdivo and yervoy. I hope things go well with the scans.

[bearkat]

Hello everyone

Sorry that I have to report the passing of my 27 year old son, Brian. He fought this melanoma beast to the very end. His courageous fight, for 2 plus years was exhausting and inspiring. There is so much sadness and grief at this loss but also some relief. Brian's passing was a beautiful, peaceful and spiritual experience. That you for all of your support in this group.

Linda

[missyrand Ambassador]

Linda I just saw this post about Brian. My heart reaches out to your grief.

Missy

[Crycleo]

So sorry to hear of your son's passing. My deepest sympathies to you and your family.