Mom of a teenager warrior❣️: My 13yr old... - Melanoma Caregivers

Melanoma Caregivers

Mom of a teenager warrior❣️

Lilmama profile image
9 Replies

My 13yr old daughter , Sky, was diagnosed stage 3a Nodular Melanoma October 12th 2016. She has had 2 surgeries and currently has 8 months left of weekly injections of Interferon.

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Lilmama
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9 Replies
missyrand profile image
missyrandAmbassador

Welcome Lilmama. If I may ask, how did you and Sky discover that she has nodular melanoma?

I am a caregiver with my husband who has Stage 3B melanoma of the scalp. He had a large scalp excision over 2 years ago, and has an impressive S-shaped scar across the top of his head from ear to ear. Amazingly his hair has grown back in pretty reasonably and his hairdresser keeps things growing in the right direction. His surgeon was amazing. Unfortunately, 3 months post surgery the melanoma has spread as in-transit, so he started on Keytruda via infusion every 3 weeks. He will complete round 32 this Friday. Although he has the wild-type of melanoma, he has been a treatment responder and progress of the disease appears halted at this point.

There is another gal on this site, Kimmi3e, who has a husband being treated with interferon. Perhaps the two of you would like to communicate?

Lilmama profile image
Lilmama in reply tomissyrand

She had flesh colored warts on her left knee. I took her to the dermatologist where they started to treat them. After four treatments one of the warts was not responding so they sent it off for pathology. Once confirming it was melanoma we headed to MD Anderson for her first of three surgeries and started her treatment of interferon .

missyrand profile image
missyrandAmbassador in reply toLilmama

MD Anderson has a strong reputation as a cancer center. Thanks for sharing, Lilmama.

Saumann profile image
Saumann in reply toLilmama

Yes it does. I wonder why they are still using interferon?

missyrand profile image
missyrandAmbassador

Also, Stephanie83 also has a son who was much younger, but who is 3 years with no evidence of disease (NED) and was treated with interferon. You may want to connect with her also?

Lilmama profile image
Lilmama in reply tomissyrand

Thank you!

Toniff profile image
Toniff

My 13 year old son just finished 12 months of interferon. He tolerated it so well. The most frustrating part was that the specialty pharmacy never knew about supply and was always a hassle every month to see if we were going to get our doses. They did come thru for us and praying worked too!

Lilmama profile image
Lilmama in reply toToniff

She is responding very well to the interferon too! We are always struggling each time to get her medicine, so frustrating!

Saumann profile image
Saumann

I’d get a second opinion on the interferon. It is an old drug. In 2013 my son was staged 3a and was on interferon for a year. Also my second son was also diagnosed with 3b which is not as bad, and also was on interferon although he didn’t finish the course due to high liver levels and other side effects. I’ve since read if your dr puts you on interferon look for someone else. ( which I don’t necessarily agree with because although we did get melanoma specialists, we still saw our primary oncologist throughout his cancer journey because we loved him!) We were offered the possibility of a clinical trial of Yervoy ( ippy) back then- by our local oncologist- I don’t remember why we didn’t persue it- side effects and just not knowing enough about melanoma and treatments, I guess. Wish we had now.

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