Down and Out

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
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LisaB
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Down and Out

Post by LisaB » Wed Jul 25, 2018 9:57 am

This is my first post .I have been following this page for a while now.I was diagnosed with stage 4 Melanoma in Sept.Of 2016.I had a small bowel resection for a large tumor there and I hade a lobe removed from my right lung due to a tumor there.It was never found on my skin.I had 24 Keytruda treatments that's ended in May of this year. My scans are every three months and are NED.
Everything should be great right? Right! I have smiled and pushed my way through this from the very beginning, always with a grateful heart. I have great support from my family and friends.
Now, all of a sudden I am on the verge of tears nearly all the time.I feel like I am just waiting for it to come back.I think its because I am no longer actively fighting the cancer(with treatments) .
I know This too shall pass , but I just wanted to know if these feeling are normal for someone that has fought cancer.Thank you all in advance .

rosa1
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Re: Down and Out

Post by rosa1 » Wed Jul 25, 2018 12:46 pm

I feel like that all the times, and I've been stage 4 since 2011. I had a thoracotomy, ipi and radiation that same year. In 2014 I developed a brain met, so I had a craniotomy and SRS. I then started taking BRAF/MEK and had a series of side effects. Stopped that and started with Keytruda. A year later, in 2015 I developed another brain met. This time I just had SRS combined with Keytruda. I was finally NED in late 2016 so I quit the immunotherapy. I was doing fine until November 2017, when melanoma came back in my intestine and I had to have a small bowel resection. It was awful. After surgery I did the four treatmens of ipi/nivo. After the last dose, I developed a severe rash throughout my body so I had to take high doses of Prednisone to clear the rash. I have been now on nivo since April. Bloodwork/scans/MRI have been very good so far, but there's always that thought on my mind as to when/where the cancer it's going to reappear. I just think it's normal for all us to feel this way, and sometimes it's good to cry and let your emotions out. Don't feel bad, I'm the same way.
Wishing you the best.
/Rosa

LisaB
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Re: Down and Out

Post by LisaB » Wed Jul 25, 2018 4:52 pm

Thank you Rosa1 for responding.Now I know I am not alone in my feelings.Thank you for sharing.You have really been through it! I am so sorry for all you have gone through but glad things are as well as they are.
How did you know you had brain mets? I think that is one of my biggest fears...will I get them and not know till its too late.

rosa1
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Re: Down and Out

Post by rosa1 » Thu Jul 26, 2018 6:23 am

LisaB- the first time I had a brain met, I was having feeling of dizziness at times so I requested to have an MRI done. The second one, was found when I had the quarterly scans/MRI. I was having slight headaches on the second one, but nothing extreme. I guess we all have to be vigilant as melanoma is very sneaky. Now, every ache and pain I feel and my mind goes to melanoma.
OY VEY!

marta010
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Re: Down and Out

Post by marta010 » Thu Jul 26, 2018 7:26 am

Hi Lisa - I'm the spouse, but have the same anxiety at times. My husband was diagnosed in 2012 and is still treating but stable at the moment. The fear is still there but a bit deeper under the surface. I don't know if it ever goes away and certainly becomes more intense when he is scheduled for scans. I have learned that worrying about what might happen tomorrow robs you of your peace of mind today. Take care!

Ann

Catherine Poole
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Re: Down and Out

Post by Catherine Poole » Sat Jul 28, 2018 6:55 am

Marta, WELL SAID! Stay in the moment. Hard to do, but it will restore your mind.
Catherine M. Poole, President/Founder
Melanoma International Foundation

buffcody
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Re: Down and Out

Post by buffcody » Mon Aug 13, 2018 6:56 pm

In reading the posts and the mention of getting tested for brain mets, my own experience was that when my original melanoma was found in my lung and not skin so that I was an automatic Stage 4 that my oncologist made an immediate decision to have me undergo a brain MRI. I had no symptoms that would suggest I had brain mets. But I did. And a combination of SRS and simultaneous immunotherapy spelled a relatively rapid end to the two unwelcome visitors. Though there has been no return of mel to my brain, I am still getting a brain MRI every 4 months (down from 3 until this year). Certainly glad my oncologist decided on the plan he did or I might not be around. Frank

MathewR
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Re: Down and Out

Post by MathewR » Wed Aug 15, 2018 3:31 pm

Agreed. Insist on regular brain MRIs!

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