How do you cope when waiting for treatment to start feels endless?

Waiting for treatment to begin while managing medication side effects creates such a challenging period of uncertainty that many in this community understand deeply. The combination of anticipating results, dealing with medication impacts like sleep disruption, and feeling caught in limbo between procedures can feel overwhelming, and reaching out for support during these times shows real strength. Others here have navigated similar waiting periods and may have insights about coping strategies that helped them get through the most difficult days.

William, can’t you go on the portal and see your results? Even if you don’t understand the report, look at the impression and you will get it.

Hi Jill, yes I can go on and see the results once they post them. Still waiting, I reached out to my doc yesterday to see what the hold up is so hopefully will get them soon. Thank you for taking the time to respond, I hope you are doing well with your treatments and are feeling good. Thanks again

Your welcome

Appt w/my Oncologist on the 4/24 w/my results of my 3rd PET scan last month, stopped chemo like 7 mos ago I have Invasive Agressive Melanoma I was diagnosed 10/2024 and surgery to remove the tumor 12/2024,

Hi William. Have your blood counts come back down so you can continue your infusions? Are you still on prednisone and how are you feeling?

Hi Beverly, yes my blood counts finally came back down and was able to restart treatment again. I have done 2 rounds of the Opduolag. Been feeling ok but the past few days I have been waking up with headaches. I am not sure if it’s seasonal or side effects from treatment or why. I am also awaiting the results from my Signatera blood test. How are things going with you? Any updates? Thank you so much for checking in, much appreciated and let me know how you are doing

Glad you are back on your meds it’s a roller coaster. Just had my 2nd treatment of opdivo-yervoy yesterday. My blood counts were great I feel good. Had some diarrhea after the first one 3 weeks ago but 2 other members on house also sick so probably a virus all cultures negative. Thank goodness! Rechecking Pet scan in 3 weeks before 3rd dose to se if it’s working. Then probably some surgery to remove armpit lesions Good health to you!!

Been a bummer weekend. Got my Signatera blood results and my numbers jumped from a .04 to a 8.1. The NP wanted to move my scan up from the 27th to sooner to see what’s going on but my Doc said to leave it for the June 27th, not real comforting. Been freaking out all weekend, trying to keep my mind busy from going into panic mode. Anyway, hope all you guys doing well. Stay strong, stay positive!!

Hang in there. I’m waiting for Signatera and PET scan results.

Thank you Jill. Please let me know how your results are, if you want that is. This sucks. Been feeling more run down and of course my mind goes right to the worst as to why. I hate this, it’s hard but am so glad I have this place to converse with people that understand what it’s all like so thank you for your responses, it means a lot.

William T How are you doing?

My results of Signatera was negative and Mr PET scan was good. I thank God for my good luck

That is AWSOME!!! So happy for you. So, are you officially in remission?

William T Did they hold your infusion when you were on steroids?? Developed diarrhea and infusion rated colitis 1 week after 2nd treatment opdivo-yervoy Going to start on 40 mg prednisone tomorrow. Due for my repeat pet scan and 3rd infusion next Wednesday….afraid they may need to delay treatment on steroids…

Hi Beverly, yes they did hold off on my infusions while I initially started the steroids. My infusions were delayed about two months, had to get weekly blood work done to check my liver counts, started me at 80 milligrams then slowly dropped me to a maintenance dose of 20 mg then started my infusions again. I hated the high dose, kept me up at night and felt jittery, not to mention the mental aspect of worrying about missing my infusions. The steroids did work though and I hope they help you feel better soon can start your infusions again soon.

Thanks for the info I started feeling better even before the steroids but they still started at 40 for 5 days. Hope it can taper down to get treated next week! Hard to say which is worse ! The disease or the treatment side effects🤨

You are welcome and anytime. I hope you don’t have to be on them long and can get your treatment. This whole situation is a challenge all the way around, it always seems to be something to deal with.

Yes. Hope you are doing better Praying for good scan results for you… and me!! 🙏🏻😊. My axillary node was quite hard and large a few weeks ago but it seems I can barely find it now!? Hope that means things are going in a good direction….!!

I don’t know if I’m in remission. I have my tx this Friday and I’ll ask. I hope you are doing better.