New to group: My daughter is 25 and... - Melanoma Caregivers

Melanoma Caregivers

New to group

My daughter is 25 and receiving treatment for stage 4. She started on Opdivo, then they added Yervoy. Her cancer continued to spread so we stopped Yervoy and added Taf/Mek, and she’s in her 5th week. Meanwhile she continues to get Opdivo every 3 weeks. Her last MRI last week showed tumor shrinkage in her brain and hope has been restored. But she is having an awful time staying hydrated and keeping food down and has been in hospital twice in the last two weeks. Nausea meds aren’t working at all and she complains of stomach pain. It’s breaking my heart and I’m having a really tough day.

15 Replies

I'm sorry she's having such a rough time. Opdivo is known for is gastric side effects. Other than the side effects, how are her spirits? How are you?

Hi - I'm so sorry to hear about your daughter and her struggles. My situation is different as my mom was diagnosed with melanoma. She is having Opdivo and we are thankful she is responding well. As a mom of a twenty year old I think I can relate to wanting so badly to fix things and she's so young to be facing this. The advice we were given was to always question the doctors and find out why they are proposing the medicines and combinations. There truly is a lot of hope for melanoma with immunotherapy and I pray your daughter is able to benefit from the drugs. Wishing her a better outcome from the side effects. Out hearts are with you both.

missyrand profile image
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Dwalach,

I hope that your down time has gotten some relief. It is very difficult when really basic things like holding down food and water are not happening. I’m glad you are feeling encouraged by the treatment results.

What are you finding that is helpful when you hit a rough patch?

Missy

in reply to missyrand

I try to go to Caregivers support group when I can. Talk to Family. Emotional eating is one of my favorite things. If I can motivate myself to walk I always feel a little better. We are at the ER and she’s going back in the hospital. Fluids seem to be the only thing that helps her. The oncologist will talk to us this week about lowering her dosage of chemo and I think we might add in home infusion care.

missyrand profile image
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Sounds like an adjustment to care is reasonable. Does she have a portocath or pic line so anti nausea meds could be delivered other than by mouth? Does she have a palliative care team?

Hoping you get a walk in today and a nap

Missy

in reply to missyrand

She does have a port, he has offered IV nausea meds at home so we might try that. She does not have Pallative care and I need to look into that. He is taking her off this chemo and looking to switch to another with less side effects, but I expect it won’t be any better based on the literature.

And thank you lovelies for responding:) it’s nice to touch base with people who have been through this!

missyrand profile image
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Take care

Hi Dwalach, jumping in here - from one stage 4 melanoma caretaker to the next!! we are here for each other and a team, all over the world. Stay strong for her even when you feel small, she will get thru this!!! Firstly, i would like to know her condition today to start.. then maybe i can jump in and give you some hopeful stories about my significant other's metastatic brain lesions , and how he went thru 9 brain lesions to NONE, and REMISSION in 4 months! Im here to be your hope, your strength and your will to never give up. She is young and will get thru this, try to request Colotipin if Zofran isnt working thru IV first for neausea.. i can get into more specifics shortly

in reply to MelanoMORE911

Her tumors are shrinking all over her body. We just got Palliative care on board and he cut her pills in half. We are working on eating now that her nausea is a little better with Regland, trying not to do IV meds at home. We start new chemo this week:(

MelanoMORE911 profile image
MelanoMORE911 in reply to

Why can’t she do immunotherapy instead of chemotherapy ??

in reply to MelanoMORE911

She is doing both, chemo to stop the progression. We started on Opdivo and added Yervoy but it kept going. Now the immunotherapy has had a chance to catch up and her tumors are shrinking! Oncologist wants her to switch to a different chemo this week. She dropped the Yervoy when she started chemo but we have kept the Opdivo.

MelanoMORE911 profile image
MelanoMORE911 in reply to

Yes!!! There is hope! if you dont mind me asking, how many tumors does she have right now? Can i have a little background story? I would love to share with you success stories my husband had from 9 metastatic brain lesions to brain remission in 4 months .. its my job to instill hope and peace to everyone else around the world that is battling the same disease. When you have weak moments or bad days, i would want you to think of Jim, and what he was able to overcome, thats my purpose!!!

in reply to MelanoMORE911

I don’t know how many she has. We are having challenges getting fluids and fresh food to stay down. I am hopeful she will recover. Not doing the PH thing.

missyrand profile image
missyrandAmbassador

dwalach,

Glad to hear there is movement in the positive direction now.

missy

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