My worst nightmare is back. Sigh. Just when I thought all was well and good, my PET scan in May’16 showed a lighted lymph node around my lung. I did an endobronchial ultrasound needle biopsy and results confirmed cervical cancer. I was in pretty bad shape the last 2 weeks, both emotionally and physically. Been crying buckets. Also exhausted from seeing doctors for 2nd opinion. Currently, I’m still intermittently depressed and trying to muster courage to go through the pending chemotherapy of taxol/carbo/avastin…AGAIN. I was tested positive for PD-L1 inhibitor so my chemo dr is planning immunotherapy in the future. Really need some support here and positive stories to push me forward. Ladies, please help!
Hi Ashley. I am sorry to hear about your recurrence Hon! I hope you beat it for good! Which cell type were you...adeno or squamous?
Much love and luck, helen x
I had the Bastard zombie tumour floaters get in in my in my lungs in my lungs and had tthe exact mix of chemo you are going to have and it worked!!! I finished treatment in October 2014 and I've been in clinical remission since.
You CAN do this! I actually found this treatment easier than chemo radiation and I honestly wasn't bothered about hair loss. It's It's a tough break but it's worth the fight. Message me honey if you have any questions.
I'm really sorry to hear that you've had a recurrence. I hope you get some reassurance on here. I've read Anna Sparkles comments on the forums and they give me a lot of hope so thank you Anna!
I find out tomorrow if mine has come back so who knows we may be fighting it together.
It sounds like your doctors have sprung in to action on the treatment front. I was just reading about immunotherapy the other day but wasn't sure how widely available it was. Where abouts in the country are you if you don't mind me asking?
I'm so thankful for all your replies! Past few weeks were a big mess. Really need the extra push from you guys!
Anna: Thank you for your story!!! You are my inspiration! Urgh. I couldn't believe the stupid floaters make their way to the lungs. It's a long freaking distance! Can I ask how you detected the recurrence? Any symptoms? I had this 'asthma' sound in my lung since 2014 but my doctors didn't think of it as sinister until the recent PET. Oh well. Really thank you for extending support to me. I will PM you if got questions along the way k. Hugs!!
Helen: Thanks for your encouragement! I really hope to beat the crap out of this....ONCE AND FOR ALL. My cell type is squamous
Cara: Big big hugs! I know how scary it is. Let's hope that yours isn't a recurrence and life can get back to normal with your little baby!! I am residing in Singapore. Yeah, this immunotherapy is quite novel. One of the medical oncologists whom I sought for second opinion told me that I might be a candidate for it. Firstly, he thinks it works for squamous cell cancer. Secondly, my cancer is virus driven thus exhibit PD-L1 inhibitor. So I sent my biopsy results to the lab for testing and confirmed PD-L1 positive. That's why my chemo dr is considering that option next time. But they won't recommend that now coz still awaiting clinical trials data. Currently, I only know of Opdivo and Keytruda drugs. Hope others who have experiences with immunotherapy can weigh in on this!
Hi Ashley :-)
I was so sorry to read this and I was on the edge of my seat hoping that Anna had seen it too. And she had! Hurrah for Anna! Wishing all the very best for the next exciting (?) stage of your journey.
Be lucky :-)
No symptoms at all. Felt fit as a fiddle. Was my second 6 month post treatment scan that picked it up. I had 4 enlarged nodes near lungs and a 4mm nodule in lower left lung. Completely floored me. But like I said I had the same treatment as you and now in clinical remission. You can do it! Anna xx
I am so sorry to hear this. I am sending you the biggest hugs and love from Australia.
So good to read Anna Sparkles story - so much inspiration for you Ashley!
this is my first post just wanted to wish you luck and say hard as it might be stay positive. I've just finished chemoradiation for my second recurrence. Originally diagnosed in 2014 had a hysterectomy in July of 2014 and was given the all clear. By December it was back contained in the pelvis and I started chemo (carbo/taxol/avastin). I had a good response to treatment and again was given the all clear in May of 2015. All was good until December 2015 when again it was back in the pelvis again. I had 6 weeks of chemo and then 5 weeks of chemoradiation and last week finished 8 booster radio sessions. I had an MRI scan 2 weeks ago which showed a brilliant response to treatment so I'm now crossing my fingers and hoping follow scan in a few months will bring good news. Like you I searched for positive stories and there are a few out there. Hoping for good news for you too x
Wow! What a trooper you are H3lz! Thanks so much for joining us to spread more positivity
Be lucky :-)
just wanted to say thanks for sharing your story , I've had recurrence last year , had a terrible time with my negative consultant
I'm clear now , tivoli's right what a trooper you are , its great to read positive stories , good luck with your follow up scan , keeping everything crossed for you
Thanks both I've been very lucky with my medical team sorry yours were so negative. Positivity is the key to keeping going. My friend laughs at me says I can always find a silver lining and I can. This forum had been so helpful I thought it's time for me to contribute and not just read. Thanks for the replies.
Thank you for your lovely well wishes and encouragement! I'm doing my first chemo cycle in a hospital while writing this post. Its really great to hear from recurrent survivors. Really calm my nerves so am thankful for your contributions - Helz, Greenie and Anna! I admire your tenacity and optimism. You understand the struggles. I hope you will get long lasting remissions (like forever) and clear scans! Past few days I've been pretty worn out by hospital visits and getting paperwork done on my tumour biopsy so didnt manage to post. Drs wanted to do Next Generation Sequencing to identify gene mutations. This is all very new to me. Do you guys have similar experiences or have your drs discussed the possibility of experimental therapeutics like immunotherapy? They said if my cancer were to recur in future then they might try immunotherapy and perhaps put me on clinical trials. Okay, I guess I'm moving too far ahead.
Thinking of you I had carbo/taxol/avastin to treat my first recurrance and by half way the tumor had shrunk from 7 and half cm to only 2 and a half cm. It's a long day at hospital mind but meant I was there early and always got my favourite chair. (there's the silver lining) I try to never think further than my next appointment or it sends you into crazy panic mode, which is not useful to anyone. Save your time and energy for keeping yourself well and being positive. I had a massive diet change and read a few books and researched recipes on the internet. I actually have a book that I wrote all the recipes I liked the look of in. I noticed a differnce in my energy levels and it made me feel like I was not only helping myself get well but I had control of at least one part of my life. I also do arts and craft and adult colouring books I found it helped to keep my mind focused on something else. I read a lot anyway but another silver lining is I have lots of time to read all the books I had for my birthday. Sending your positive thoughts and one day you'll be saying the same to someone else who needs some hope.
I can't help with questions about your treatment but I just wanted to say I hope you're doing ok. One appointment at a time.
Lots of love, Cara xxxx
Go stick two fingers up and show it whose boss Ashley.
much love and positive vibes.
Thinking of you. Sending lots of healing vibes your way!
Dear Helz, your words of wisdom really meant a lot to me! You are absolutely right. I ought to save my energy and time on being well. I've been wasting too much time crying and feeling moody about things. Aint good for my soul. Shall not think so far ahead. Thanks for reminding me to stay grounded!! I know I would slip into a very dark abyss just by thinking of the never ending treatments ahead. This week I'm coping with the chemo side effects. Felt like been ran over by a truck. Hopefully my energy can improve and I'll be looking for the 'silver lining'. Big fat hugs!
Dear Cara, Rosie and Helen, receiving your love and positive vibes all the way from Singapore! I'll endure this shit and kick cancer ass! XOXO
Hope you're all well. I just wanted to update you all and keep the positive vibe going. I've had my last scan results today and against the odds there is no sign of cancer. Just wanted to let people looking for hope know you can win.
Love and positive vibes