My short journey so far

Hi Squonk and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that you were diagnosed with melanoma last year and that you've had to change treatment recently. However, that's great news that your latest scan shows no cancer in your body!

I haven't had the treatment that you're on but I'm sure the forum members who have will be happy to share their experiences with you if you want to ask anything.

It would be great if you could put something about your diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best

Thank you latchbrook. I have started editing my profile to record my journey with melanoma.

Hi I on dabrafenib and trametinib. I've been o  since November. I was diagnosed in july too and had surgery  in August  2023 3 of my lymph nodes were positive mines at stage 3a on it for one year. So far had fevers had to stop treatment for 3 weeks and come up with acne rash on face and back spots. Now back on treatment and doing fine at moment. But having to have a thyroid nodule checked out hopefully it's nothing. Hope your treatment goes OK and side affects not to bad.

E 

Hi Miss mole, I am stage 3c. I also had a swollen lymph node in my neck noticed during one of my CT scans. I had an ultrasound scan which didn't show anything to worry about. Hope your thyroid node is clear.

Hey Squonk,

1. I was on this medication combo for 5 years and was part of the clinical trial of app. 550 in 2012. At age 49, I was diagnosed with melanoma stage 3/4 with tumors in five different locations, none in major organs, however. My tumors were down to zero after about 18 months on this medication although I did continue to take it for a total of five years. I’m very healthy now and have had no reoccurrences to date, praise God! I initially got very sick on the medication, had really high fevers 104 degree’s chills, so I stopped taking it for a couple of days, realized that it was toxic buildup in my system, and I needed to detox to be able to stay on the medication and survive. The best way for me I found was heavy exercise, weight lifting and allot of water and of course healthy eating to keep my weight up. I would wake up each morning after about nine hours of sleep, drink 2 cups of coffee take my medication with minimal water, read my journal, “Jesus Calling” and go straight to the gym for at least one and a half to two hours of rigorous weightlifting.

I would visualize the medication circulating in my body, killing the cancer cells with each rep and set I did. I love life probably more than most and I was so mad that I got cancer and was facing near death that this gave me some serious motivation in the gym. I was so damn mad!

I would then eat a somewhat healthy lunch, turkey sandwich usually high-protein and vegetables as much as possible. I stayed away from concentrated juices and anything that would be hard for the kidneys and liver to filter, drank quite a bit of water through the day maybe four or 6 glasses of water depending on how toxic I felt. I would go to the gym every other day so about four days a week. I knew if I could get through my work out each day that I was at least maintaining and not going down. Occasionally, I would feel really bad and would not take the medicine for a day or two then get right back on it for weeks on end, but definitely took breaks from the medication as needed to stay on it long-term. this was especially true after scans. The dye they use for the CT scans really made me sick for a few days after. I had over 25 scans during this time. I did have a decent amount of brain fog and just an overall bad feeling, headaches every now and then of course once I got off the medication this all went away over time and got back to normal.

The first doctor I saw was a general oncologist and he gave me 4 to 6 months to live pending medication. He wanted to treat me with lung cancer medication.
I quickly found a melanoma specialist and was able to start the clinical trial. It was a miracle for me, right time and place.

I hope this helps you and anyone else that reads it. It’s important to have a super strong will to live because the alternative probably not so great. I do give God all the glory. Live Strong!

TS