Question about Keytruda

Posted By
sharonlynn210
10/10/2018 1:14pm
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Replies: 14

My son was 18 when he was diagnosed with Stage 3.He started Keytruda 5/3/2018.He will be getting his 11th infusion on Oct.22.They did see a few lung nodules on his 3 month scans that were 2mm and 4mm.They did not show up on his orginal Pet scan so they do not know if it was there or new.His six month no change in nodules.Im really worried for him.A lot of people told me lung nodules are common and may not mean anything.But how would a 18 have lung nodules.Has anyone else experienced this and do you think the Keytruda stopped them and will kill it?

Sharon

MarkR - (10/10/2018 - 4:51pm)

Hi

i was 23 on first diagnosis and 36 the second time when I had my first CT that showed a 1cm lung nodule.  This caused me lots of stress but 2 years on and it hasn’t changed but they have also commented I have multiple small lung nodules up to 3mm.  My docs don’t seem worried about it and I have just got to the point of not being worried about - if they start to grow it may be time to worry, but in the meantime relax and wait for the next scan.

mark

sharonlynn210 - (10/11/2018 - 12:08pm)

They also said Ryan had several small ones.They dont seem worried either.Did you do any treatment?

Sharon

GreggL - (10/10/2018 - 7:34pm)

I was stage 3b in 2014 when I was first diagnosed. After 17 months of chemo and being off for about 4 or 5 months they found a nodule on my right lung. Everyone, except my best friend, kept saying oh it's probably nothing and that really annoyed me. My best friend said, well you've never had any tumors before on your lung, now you have melanoma and there is tumor so all signs point towards melanoma. I knew in my heart it was and sure enough it was. So, I officially became stage 4B in 2016. I had a wedge resection on my right lung. Started on Opdivo in April 2016 at the twice monthly dose and about 4 or 5 months ago switched to the monthly dose and I've had negative PET scans since I started. I really don't know how common it is for an 18 year old to have benign nodules on their lungs but with a history of melanoma it's much scarier to think about. Please let me know what happens when you find out, 18 is way too young to be dealing with this and I wish the best for him. 

sharonlynn210 - (10/11/2018 - 12:11pm)

Thank you for your response.I will let you know:)

Sharon

MovingOn - (10/10/2018 - 8:31pm)

My scans last week showed a 6mm polygonal nodule in my lung. The scans 3 months early notes something very small in the same area (I don’t have the exact words from the scan in front of me). My Oncologist says not to worry about it and they will check it again in 3 months. I’ve gotten to the point where I don’t worry about anything under 1cm (and if it’s a lymph node I’m ok up to 2cm as long as it has the normal shape).

I’m not sure this is helpful but I’m just saying lung modules seem to come and go for everyone. So stay vigilant about it but also don’t let it worry you too much unless it becomes bigger.

2018 is a new year!

MovingOn - (10/10/2018 - 8:33pm)

I should have added that I’m on Opdivo. If I weren’t on treatment then these small things would worry me a lot more.

2018 is a new year!

sharonlynn210 - (10/11/2018 - 12:13pm)

Same here.I believe the Keytruda stopped it.

Sharon

KellyH - (10/11/2018 - 9:15am)

Hi Sharon. 

My 17 year old son was diagnosed in February 2018....Stage 3a. He was a senior in high school as well at the time he was diagnosed. Looks like we have a lot in common.  This last 8 months has been overwhelming to say the least. 

My son is currently undergoing Opdivo treatments every 2 weeks and goes for his 6 month treatment scans in a couple weeks. I am one big ball of nerves...this scananxiety is definitely a real thing!!!!!  It is pretty much all I think about.  His original PETscAn after diagnosis was clear but I know that that means nothing now...each scan is a new possibility of something being somewhere. 

One of the hardest things with this immunotherapy is not knowing if it is working.  I’m not sure how common lung nodules are but  no increase in size has to be good news. It seems to me that is the only way to know the meds are working. 

There are so many people on here with so much information and experience, they have been doing this melanoma thing for so long and I find it gives me the strength to get through the day sometimes.  I definitely understand what you are going through.  I felt so alone when we first were diagnosed...kids don’t get melanoma....well I learned pretty quickly how not alone I am...please if ever you want to connect let me know!!! Via email, text or talk....I know how hard this is as a mom...especially a mom of an 18 year old boy. My son is not a real talker on a regular basis and  definitely does not like to talk or even think about this.  So that makes it even harder somedays. 

Hang in there!!!! I will keep you and your son in my prayers. 

Kelly :) 

A Melanoma mom ❤️

sharonlynn210 - (10/11/2018 - 12:18pm)

So true.My son does not even like to discuss it.He just wants to finish the Keytruda and be done.I am not sure if he really understands Melanoma like I do,Ive done a lot of research and know how sneaky it is.Trust me if I can get through one day with only crying once then that was a good day for me.It was so hard seeing him go from completely healthy to surgeries,drains,scans,needles.I so wish it was me:(

Sharon

KellyH - (10/11/2018 - 3:34pm)

Yes I know exactly how you feel. Watching my child go through the surgeries, the tests, the treatments, etc...was and is torture.

I do wish every minute of everyday it was me and not him having to go through all this.  

 Kelly :(

A Melanoma mom ❤️

It is a possibility that the lung nodules are not melanoma... and were there on his original PET, but did not "light up". They would, however, show up as "grey spots" on a CT. 2mm and 4mm are still quite small, so this is "good news", even if they are metastasis... particularly because they have remained stable in size. Oddly enough, our bodies have lots of oddities in them that many of us wander around completely unaware of. Because of my melanoma, I learned that I have a pancreatic cyst. It's been there since my very first CT ever, and has remained stable for over 5 years of my awarness of its existence. Lung nodules in and of themselves are not entirely uncommon in normal healthy people. Knowing that he has melanoma does make it a little more of a "what's that?" situation. If they're still stable at 2mm and 4mm, I'd say there is a fair shot that either a) they aren't the cancer or b)the Keytruda has them in check.  Hugs to you for having to go through this with your kiddo..... I don't even know if I could remain sane in your shoes. 

sharonlynn210 - (10/12/2018 - 11:55am)

Thank you for your reply:)

Sharon

MelanomaMike - (10/12/2018 - 3:45pm)

Hi Sharon, boy do i wish your son well, and i hope the Keytruda starts working its Immunal Magic! Im surprised a quick CT Scan wasnt done before his 1st bag of Keytruda, its Onology 101! But here nor there, his future now is what counts, tonight before i sleep i ALWAYS pray for my Melanoma folks... Be well Shar...

Im Melanoma and my host is Mike..

www.covvha.net

sharonlynn210 - (10/16/2018 - 1:56pm)

Hello Mike.

They did a Pet s

can before his first infusion.They said they could of been there and the Pet scan did not pick up.

Sharon