English Community

Hi all
I’m so grateful for everyone who posts here as reading your words helps me so much.
I was scheduled for my third round of Abraxane and Carboplatin today but my neutrophils aren’t high enough (1.1) and I had an allergic reaction to Restoralax on day 11 (my first time taking it) and they think that might have something to do with the Carboplatin. I’m confused and sad to be giving the cancer cells an extra week to grow. Of course I understand that they’re just taking the best care of me, but you know how it is when you wrap your head around how this is going to go and then get thrown off.
I had surgery (radical hyst plus debulking plus omentum taken etc) on August 21 and things have just moved SO slowly through this whole thing. Realized I had ovarian issues in April and the waits for all the things were just excruciatingly slow. So now that I’m finally started on chemo, I really wanted it to just go to plan. Anyway, really trying to embrace my journey and trust my body’s ability to heal and get me through this. OC has been such a shock, as I know it is to every one of us. My surgeon is also my oncologist but I see her team, not her, and the lack of consistently, seeing someone new to me every cycle, is difficult too.
Just feeling discouraged and anxious and sad right now.

A warm hug to you @Mary-Sue as you go through this period of delay. I can understand how disappointing and stressful it is to now wait a bit for your neutrophils to build up again so the chemo plan goes forward, and it will. I have read many accounts similar to yours about a delay in the infusion and all was fine in the end. 
I think that I had a huge allergic reaction to the paclitaxol on my first infusion, which sent me into a tailspin. Our bodies can react in unexpected ways, but the medical team seems able to pivot and make the adjustments to keep us safe. 
I also understand that not having a consistent medical person to rely on is difficult. I get a 10-minute phone call from my oncologist every 6 months, but thankfully I have a local GP with oncology training to sit with me every 8 weeks and discuss my situation. We need a consistent person to be there for us, especially during treatment. 
I hope you can take this little break to rest up, eat good food, & have some pleasant diversions. 
I know about the constipation issue with treatment. The nurses recommended Senna-S which I used especially in the days after the infusion and then Restoralax as needed. There might be other products you can try if you reacted to the Restoralax. 

This encouragement means so much to me,@LeslieA. Thank you so very much. Your words feel like a warm encouraging hug. I see you are also in BC. I'm in Vernon. Thanks again. I should get some answers as to what they're concerned about when I meet with an oncologist this afternoon in Kelowna. 🥹💝

I'm just realizing I didn't say (did I?) that my first round of chemo I couldn't take the paclitaxol due to a very strong reaction. So reading that you had that too and are now NED is SO encouraging for me. And also reading in your bio that you found the infusions made you anxious was really validating too. My brain just doesn't feel like mine anymore. I'm not the mother I want to be and I have to really give myself grace and communicate my limitations clearly to my (almost grown) family. I have read every book in the cancer centre library on this disease and everything I can find and that's been helpful. But hearing from my teal sisters what their experiences have been and getting reassurance from you who's actually been through it all is just next level encouragement and validation. I know you know, but words fail me in how powerful this forum is for me. Thank you✨🩵

@Mary-Sue

I am very glad that this forum has been reassuring for you! When we get diagnosed and begin treatment, I think our nervous system goes into crisis mode. Our thinking faculties may not work as well, and our emotional parts of our brain are in high gear. I became a daily crier during treatment and decided that it was okay. It felt like a pressure valve was released after my teary sessions. And I hated feeling sick, and feeling scared. I was definitely not my regular self at that time, but I am now, one year and 4 months out from the last infusion. So yes, be kind to yourself as your focus is on getting through this stage. 

Regarding the paclitaxol issue, they didn't change medication for me but instead loaded me up with steroids so that my body accepted it. I took 10 pills the night before each infusion and it seemed to work. My appetite afterwards was incredible! I was like a lion roaming around the house, looking for more food an hour after eating an adequate meal. My body asked for starchy, filling foods and I gave it whatever it wanted. (I had lost 12 pounds prior to diagnosis, so I had some catching up to do and I quite enjoyed the indulgence of eating whatever I wanted, whenever I wanted it). I am back to my healthy weight again and no longer roar for more food!