Before the infusion, Steve had an appointment with his doctor (Dr. Kim). It was pretty short and sweet. The doctor felt Steve's neck and also was unable to find the lymph node that we could previously easily find. Dr. Kim seemed pretty confident overall in how Steve's treatment is progressing. He gave us the choice to wait 3, 4 or 5 weeks for scans. Even though waiting is nerve racking, I kind of wanted to wait 5 weeks because some of the effects of Yervoy are delayed. Dr. Kim said to just go ahead and come in 3 weeks. So, we will see how everything looks in 3 weeks.
When we get the results in 3 weeks we will know more of "What's next?". If the scans come back with no new disease and/or things are stable and/or gone, Dr. Kim's plan would be to come every 3 months for scans. I am not so sure this will be OUR plan though (shhhh, I haven't told Steve yet!). There are a few trials that are maintenance programs for Stage 4 NED (no evidence of disease) or Stage 4 stable patients. I may look into one of those depending if they say he is NED or just stable. I don't expect scans to show any new disease since the last scans a few weeks ago showed no new disease and current disease had shrank by @ 50%. But one thing I have learned.....don't "expect" anything from melanoma except for it to take you by surprise!!! So, new disease is always a possibility unfortunately. That's why I don't really like the "sit and wait" approach. Maybe with NED, but not with "stable". To me "stable" means that we need to keep fighting till we hear NED!!
Anyhow, I'm super tired and heading off to sleep! Here are a few pictures I snapped today....
This is how we pass our time while we wait.
More waiting!! Planning on wrapping the room next time.......kidding D!
Ipilimumab is HERE - 4th and final!
Getting his drugs and playing on the Ipad
All finished up.....ready to eat!
Ooops, we forgot the before picture.....we were starving!!! Ahi Tuna appetizer
Fish taco and cajun chips
French Dip and a salad
NED is what we want! And I agree with you about a maintenance program. I hate it when the Dr. says lets just watch it. My response was watch it do what??? Yipes! Will continue to pray for Steve's "cure" and comfort and peace for all of you.
ReplyDeleteThank you!!!
DeleteHi Jennifer,
ReplyDeleteThat is great news about your husband....my wife had melanoma removed from her arm 2 years ago....we have been going to UCLA over those 2 years every 3 months for follow up and CT/PET scans....a few days ago we found it has traveled to her lungs...we are going to UCLA this Friday to discuss treatment options and then we are going to meet with Dr. Kim in Houston the following week for a second opinion....anyhow i thrilled your husband is responding and wish you and him the best...eric w
Thank you, Eric. I wish you and your wife all the best! You will love MD Anderson and Dr. Kim. How big is the tumor/s in her lung? Please keep me posted!
DeleteHi Jennifer...the report says at least 5 sub centimeter nodules were seen to have grown...in a scan done last april they noted that multiple sub centimeter nodules were seen...what multiple means i have no idea...but the scan a few weeks ago saw 5 of them had grown slightly....they did a bio of one and it was mel....my hope is that this is the only site that has been impacted....is there any way i could contact you and bounce ideas off you? I have had a crash course in treatments the past few days and you seem knowlegable about things...anyhow thanks
ReplyDeleteHi Jennifer....I just sent you a friend request on FB. You could also check your messages in the other folder on FB as I sent my contact info. I hope you dont mind. Thanks
ReplyDeleteAwesome! I don't mind a bit!
DeleteHi Jennifer,
ReplyDeleteThis a great blog that is obviously helping lots of people. I was diagnosed with Stage IV melanoma last month and have an appointment with Dr Kim on Thursday. I had a melanoma removed off my check in 2010 with a sentinel lymph node biopsy that came back clean so we thought we were done. It showed back up and is in the lower left lobe of my lung as well as a large tumor in my abdomen. I found your blog very informative. I'm also a lifelong Saints fan so I love the pics of y'all going to NOLA for the game :)
I sent you a Facebook message too that you'll find in your 'other' folder. - Kara M
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