MichelleRHG

Hi Stacy, for what it’s worth, I have had pleural nodules, thickening and fluid in one of my lungs since March 2019. Had thoracotomy in 2018 to remove melanoma of hilar node. Have been on Opdivo all along, and when nodules seemed to progress a little in fall of 2019, added Yervoy. All nodules are still very small, stable. Opdivo continuing. Not sure it’s helping, been on it for over 3 years. Just wanted to let you know I’ve had this junk in my lung for over 1 year and no symptoms, no significant growth.
Read everything from Bubbles! MSK has a great reputation so I am sure they will give you wonderful care.

Ed has given you the best resources by the top doctors in the melanoma world. All I can add is the port is more of a personal decision – just weigh the pros and the cons. I opted for no port and have been having infusions for 2.5 years plus blood draws, etc with no issues. But discuss with your doctors. Good luck!

Hi. My understanding is that when the TSH is low, it may mean your thyroid is overactive, therefore does not need TSH to stimulate hormone production. If thyroid is underactive and needs “revving up”, the TSH kicks into high gear to try to stimulate the thyroid to secrete what it needs to.
However, at the end of the combo for me a few years ago, my levels were going crazy, with T4 high, TSH on the low end. My melanoma oncologist said this happens sometimes when the thyroid is about to fail as an attempt to get itself going again. She predicted those levels would reverse in a short amount of time, which they did, and now I take levothyroxine to replace the lack of hormone secreted by the thyroid. Your doctor will stay on top of this with labs. Let him/her know if you experience any symptoms of thyroid dysfunction before your next labs are drawn!

Hi Steve,
If you can’t cut through the red tape, perhaps you can avoid it. I get all my scans, biopsies, surgeries, plan of care at MD Anderson BUT I have a local onc in my hometown who administers my infusions. My melanoma onc at MDA is perfectly fine with this arrangement. I think this happens quite often with patients from out of state. In fact, my local onc had a possible trial for me recently that MDA was not aware of, and my melanoma MDA onc was 100% in favor of doing it, saying it would not affect my standing with her at all. Going to Kelsey-Seybold might not be so bad, in other words. If it were me in your shoes, I would first go directly to your melanoma onc through the portal and explain everything. He/she might be able to get things moving in the right direction there with billing, pharmacy and all of that. If not, then just run it by him/her and make sure your care at MDA would not be compromised, esp. if you (let’s hope not!) had progression. The logistics working with hospitals for me are not at all a problem He/she should be quite willing since it’s MDA that is making this difficult. Nobody needs that when dealing with cancer! Best of luck to you.

Oh, and they schedule my scans 3 months in advance through patient portal but I think at your first visit they will tell you when they will be. I have had good results calling the scheduler from home to explain circumstances, etc and they are very happy to try and get a good day and time for me.

Hi Jennifer, I’ve been a patient there for 3 years. My initial appt was different from what yours will be but my experience in the melanoma clinic is that you will probably have a wait. Its a busy clinic. Since you are Stage 4 I think they will order a brain MRI and CT of chest, abdomen, pelvis. The only times they wanted PET scans for me was before surgeries.
I doubt they will be able to squeeze in the scans after your appt. but they do run scans into the night so they might be able to. If you plead with your doctor to ask for 1st thing in the a.m. or after lunch you could still work 1/2 day. Scans will take about 4 + hours with prep, waiting, etc.
Everything is very well organized there and runs smoothly. Just slow much of the time.
Which oncologist will you be seeing?

I don’t know about lumps and bumps but I do understand that waiting is terrible. It’s sometimes unbearable. In my case, once a plan is in place I settle down. Hopefully that will help you after you meet with the melanoma docs! They will have a plan!

This is a scary time but there are treatments and you are fortunately headed in the right direction at MDA!
Please use search bubble to find Bubbles, where you can find concise, up to date information. Celeste has created a “primer” for new patients. She may chime in here.
Many people survive Stage 4. I became Stage 3 in 2016 and Stage 4 in 2017. It has been business-as-usual ( homeschooling mom of a child with Down syndrome and manager of the family and home!) during all of my immunotherapy and most people are able to continue working outside of the home throughout.
MDA accepts many insurance plans. Go on and refer yourself. I did. Good you are getting the images sent. They also wanted biopsy tissue from Ky so that was also sent.
You will get excellent care.
Good luck to you.

I had heard of BRAF status changing (I do not have the mutation but was hoping my status would change to +). I asked my onc recently this question she said it never goes from neg to pos but can go from pos to neg. Maybe your first path report was incorrect? Anyway, glad you now have more treatment options!

Yay!!

This is a scary journey, but lots of people are here to help! I echo what was said about getting to a melanoma specialist. If you can get to one located in a large research facility …..even better, since they have access to many clinical trials. MD Anderson (and God) has kept me alive the last 3 year’s. There are some other great places, too. Search here for the packet Bubbles has put together for new patients. There is hope!

Mike, praying for wonderful outcome for you, and for your big, brave spirit to keep shining. You give the rest of us hope and encouragement!!
All the best,
Michelle

Do whatever Bubbles says! Especially run to a melanoma specialist. Get on an airplane, whatever it takes. Best wishes to you both!

I’m glad to hear the lesions are smaller! Great news.