Chemo and Immunotherapy: Any tips before I start?

@sabwal While we wait for other members in our support group to respond I’d like to share that there are others here who will jump in and provide you with some very good recommendations based on their own experiences. I did have have chemo or immuno therapy so I cannot comment on that.

I can share that my own diagnosis (7 years ago) and my recurrence (5 years ago) were both so very anxiety provoking for me. I had radiation therapy (external pelvic and internal brachytherapy) for my recurrence. It was the not knowing part that was the worst. We want to know everything, as much as possible, and yet intellectually we realize that this is not possible. Our minds and bodies tell us something different - tell me, reassure me, right now. I want this stress and anxiety to go away forever.

Here is something I learned from a therapist awhile ago. Anxiety comes up in us for a reason. Sometimes anxiety “misfires” and we are anxious for no particular reason that we can discern. For me, when anxiety pops us I can usually trace the “why”. My body (anxiety) is trying to alert me and protect me from something dangerous or frightening. While I may not be able to rid myself of the anxiety I can lower it a few levels through my coping skills such as moving (taking a walk, lifting weights) and breathing. I can talk with a friend or a loved one.

Have you decided to delay your travels for now? What is your treatment plan? We are here for you.

@naturegirl5 Thank you. My anxiety is leaving me exhausted all day and wide awake all night. I am going to try to travel before treatment starts. I need to see family - it's been almost a year since I have, and treatment will prevent me from going for quite some time.

@sabwal I know what you mean about anxiety. The adrenaline that’s released and ramps up anxiety is exhausting. And the more we have difficulty sleeping, and become sleep deprived, the more anxious we get. That’s the cycle I’ve experienced.

I do hope you travel to visit with your family. With cancer treatment it’s often difficult to go anywhere. The time frame between treatments can be too short and one doesn’t feel up to travel in many cases.

May I ask what your oncologist recommends for treatment? How are you feeling about the treatment plan?

@naturegirl5 We decided that me flying to & from is too risky (flu is going around). So my mom is flying to me & quarantining a bit before she helps with my first treatment.
I started a post asking if anyone has had Carboplatin, Taxol & Dostarlimab (immuno-therapy).
Nobody has responded.

@sabwal Also, I'm gonna try the cooling cap and gloves & socks - to help with hair loss & neuropathy.

@sabwal I’m surprised no one has responded to your other Discussion. How about this? Type those medications into the Search box at the top of the page and see if anyone else has written about these. I’ve already started a search for you in another support group about managing symptoms associated with cancer. Some of these members have posted about their experiences with different medications and therapies.
https://connect.mayoclinic.org/group/cancer-managing-symptoms/

I was on the carbo-pac combination, but not with Jemperli. My first infusion nurse was extremely kind, taking the time to explain exactly what would happen with the pre-infusion meds and how I might feel as the juices flowed in. I felt cold and tired, but not sick. At home, I never threw up or had diarrhea, but at first I had little appetite. Smoothies were my go-to. I felt like I was in slow motion or a fog, After a few days, I started to feel more like myself and my appetite gradually returned. I eventually realized that I was turning the corner when I had a craving for potato chips.
The anxiety from the diagnosis, decisions, fears, etc was often overwhelming and I did seek support from a 1;1 mentor, a social worker, and eventually a licensed psychologist. I think many of us come to this forum because of the anxiety.
Keep us posted. We are here for you.

@ffr This is so helpful to hear. I'm struggling to envision what life will be like through each cycle of treatment. The scariest is reading all the possible side effects. I've never taken medication - an ibuprofen maybe twice a year. So the side effects worry me even though I am youngish, healthy (other than cancer).
Did you use cooling cap, gloves or socks? I'm trying to avoid neuropathy primarily. The cap seems painful (I am so sensitive to cold) & a bit overwhelming to manage.

I had taxol/carboplatin in 2010 when first diagnosed with HGSOC. I can remember feeling nauseous, fatigued, aching bones, along with hair loss. I was not offered the cold cap back then. I also have never experienced neuropathy, despite having many chemotherapy drugs/cycles/treatments for the last 16 years. My cancer has since become resistant to taxol and carboplatin.

@jenelleseaman
You have had a long journey. I hope you are doing ok now.
I am also chemo resistant.