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@WendyE and @Knitter24 how are you, your sons, and family holding up? I was hoping to join the Melanoma support call this week to catch up with you both but work got in the way. Sending you both some virtual support and please know I’m thinking of you 💛

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Knitter24
5 Posts

Thank you @NickytheCanuck, this has been a tough month. I should change my name as I haven’t enjoyed knitting anything since this nightmare began in February! Our son’s late October PET scan confirmed widespread bone mets and he is in much pain, and also has nausea and constipation. His medical team is actively working to relieve all this. As he described to his best friend who visited last weekend, he has a side effect so they give him something which sets off another side effect, so they prescribe something else which has a different side effect. So lots of thought going into treating side effects and meanwhile we wait and hope that the new Ipi and Nivo immunotherapy will start shrinking these bone lesions. He will have a routine brain MRI this week. He has a palliative care appointment in early December. His spirits are generally good but very low energy. His appetite is minimal and his previously slender athletic frame is losing weight and muscle at a disturbing rate. He had a nutrition appointment by phone this week which was helpful and we are working at serving him frequent, small, nourishing bites. But I get stressed that we are not doing enough. His girlfriend is his primary caregiver and she is doing a great job, and they know we are here to do more as they let us. We admire their courage and wish we could just trade places with them.
My husband and I have learned how to navigate well in this new city, to shop for them. We get our own apartment this week so only 4 more nights in our Airbnb. We miss our family and friends at home, who feel helpless too. But we are grateful that we can be here and that cross border travel is getting easier. I am trying to overcome my anger at this situation with gratitude, not easy.
I also missed the melanoma network caregiver support session the other evening. Our other son arrived that afternoon, it is nice to all be in same city this weekend.
I loved reading how you and Steven had a wonderful vacation. Important to seize those opportunities when we can. I am inspired by you guys and everyone at this site. Such an invaluable community to support going through this nightmare.

@Knitter24 how heartbreaking to read your update. I hope they find the right elixer to get his pain under control while the immunotherapy is doing its work. I find Steven’s pain the scariest part. I am sure they are relieved to know you are nearby and at the ready. We just heard that for 72 hours or less travel to the US from Canada with only a rapid test. Hoping that means support visitors for you too. Steven went through the same cocktail process and was finally able to get some relief with prednisone. His pain management team has just referred him to the physical therapy folks at the hospital to try and alleviate some of his muscle neuropathy pain. Sending all the prayers and positive thoughts that the treatment is working its magic. And sending your strength and care, Nicky 💛

WendyE
12 Posts

@NickytheCanuck @Knitter24 It is so kind of you to check in with us.

I am so sorry to hear of your son's pain. But it is good that you are near. I have not been following along on this site since, to be totally honest, I get depressed. But now that I am aware of how so many of us are affected by cancer in our daily lives, all are in my thoughts.

As I mentioned, my son had such severe colitis from the Ipi, that he is now only on Nivo. It has made a difference when it comes to pain. Unfortunately, something is now going on with his ability to pee so he was sent for a scan this morning and we will be meeting with a urologist next Monday. It's almost as if he has an enlarged prostate. His oncologist says this is something he has not seen before.

When he gets his treatments, the side effects are strong. But they subside over the following weeks until next time. He's still tired and could certainly stand to put on weight.

I was the only caregiver on the Melanoma call the other day and it wasn't very helpful. This may be because of the lack of people on the call. But I'm told this is a new service so hopefully more caregivers will join in next time.

We were to hear from the oncologist today to go over my son's PET scan results. Instead, we heard from his nurse to tell us the doctor wants to see us on Friday. I am praying this is not going to be bad news. So I'm trying to concentrate on ANYTHING other than Friday.

@WendyE so sorry to hear of your son’s struggles. I am sure it brings him a great deal of comfort to have you caring and supporting him. Nothing worse than those long waits for the Drs appointments. It’s like slowly peeling off a bandaid! Fingers and toes crossed you receive some news in a positive direction. Sending you strength too and hoping you have lots to keep your thoughts distracted this week. Keep us updated and please let me know if you need anything 💛

WendyE
12 Posts

@NickytheCanuck Thank you so much. The waiting is the worst isn't it? My son was able to go back to work today on light duties. Will keep him busy while we wait. Take care.

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