First round of scans done!

Posted By
Anonymous
7/9/2018 3:55pm
Activity
Replies: 10

Hello friends!

I wanted to share some good news now that I have the results from my first round of scans since starting Nivo in April.

Brain MRI — NED

Abdomen and Pelvis CT — NED

Chest CT — the smallest lung lymph node nodule gone, the second lymph node nodule significantly reduced (now 2.4 x 1.5cm), the largest mass had a slight increase (5.1x3.5cm) but Dr. Kendra believes it to be pseudo progression from the immune cells.

I had my 4th round of Nivo today and am feeling good!

I have two questions I’m hoping all of you in battle can provide insight on:

1) I’ve only had CT scans and MRIs so far, no PET scans. Is there a reason for me to push for a PET scan next time?

2) I’m feeling good on Nivo and am happy with the progress but I’m wondering if it is beneficial to push to do the combo in hopes of wiping out the Melanoma earlier while all of my numbers are good. Has anyone else done this?

Sending love to all of you other warriors!

 

For some reason this posted anonymously but this was posted by amcreader.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Hi Amanda, I will try to answer part of your questions, the Pet-ct would be a good thing to push for so that you have a reference point in the future. A Pet-Ct can also help you to know if things are active or just dead tissue (scar tissue). There has also been some interesting research at the university of Chicago with Dr. Jason Luke with using SRS radiation to target one specific tumor like the one you describe that might be a little stubborn, and still get Pd-1 treatment, it might be an alternative to having to use Ipi!!! Best Wishes!!!Ed  Here are two links, one on SRS and a second on Pet-ct. https://meetinglibrary.asco.org/record/159089/abstract        https://www.onclive.com/web-exclusives/pembrolizumab-plus-sbrt-active-in...

AMcReader - (7/10/2018 - 12:06pm)

Ah, SRS! I had not thought of that but that is a really good option. I will keep that in my back pocket depending on what my next scans look like. Thank you for sharing all of your knowledge!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Hello Amanda - oooh yeah, everything is coming along marvelously. 

Started at Yale - New Haven in Jan. 2008. Cancer in the brain and just about every other organ except for my heart (6 years NED). In my 10 years @ YNH, not one PET scan. They believe the CT's and brain MRI's give them all the information that they need.

So you keep going lady, the best is yet to come. 

John J Kissane

Bubbles - (7/9/2018 - 6:43pm)

Congrats!!!  I don't think PET scans are necessary if you are being followed with CT's and MRI's and docs can clearly visualize any areas of concern.  And....if it ain't broke don't fix it, has always been my philosophy.  It looks as though nivo is working for you.  Immunotherapy takes a minute.  So, I would probably opt to give nivo alone more time, were I in your shoes.  If you can deal with your melanoma with only using nivo then you don't have to risk additional side effects.  All the while knowing you could still add ipi should you have the need. Just my take.  I wish you my best.  celeste

AMcReader - (7/10/2018 - 12:08pm)

This is just the kind of insight I was looking for....I’d been sitting there thinking WWCD. :)

 

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Sorry Amanda - I failed to answer question #2 - that would be a question to discuss with your oncologist ( but you are still the person in charge though ).

I was fortunate to be in the initial trial using Yervoy and Opdivo together. After 8 months of the trial, my scans came up all clear. Yervoy does have quite a bit more side effects than Opdivo. I itched on my chest and arms for 2 years. Now if you do start the combo, you can always drop the Yervoy if need be. My advice : stay with just the Opdivo and get a good idea of how it's doing, then if need be bring out " The Buster" - Yervoy.

John J Kissane

AMcReader - (7/10/2018 - 12:09pm)

Thank you so much, John! Having insight from people with the coveted NED badge is so, so reassuring!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two shrinking lung mets. Started Opdivo 4/16/18.

Just finished my post and I see Les has given her word - she is the best.

John J Kissane