Encouragement and Support
Life after Treatment
Health Practices and Wellbeing
Just want to talk
New Here? Read this First
Re: How many recurrences has everyone had since being diagnosed?
My diagnosis was the same as your diagnosis. January 2018; major surgery followed by intense chemo. Remission until October 2018 It has recurred but is incurable, inoperable but manageable. I took chemo from October until May 2019. I'm on a break until September. Hoping the break didn't let the disease spread too much more.
Re: Fatique 17 months post chemo (Carbo and Taxol)
Thanks for your reply …. sounds like your looking after you. Down sizing and walking - that's great.
I found out yesterday I have Fibromyalgia and Chronic Fatigue Syndrome. Explains it all.
What a journey you have had - and how tenacious you are! Go girl!
I have a rather unique Lynparza journey in that I actually was part of the SOLO 1 study for the drug as first-line post treatment use. I came off the drug trial and experienced recurrence. The end result being treatment and after significant advocating, I am now back on the drug. Initially I was denied as I had technically already been on the drug - but that is a long, technical and convoluted story detailed in this thread earlier.
It is an awful place that you are in right now - seeing this potential on the horizon without being able to access it. I have been there. I participated in the clinical trial PRIMARILY so that women would not be facing what you are currently dealing with. I pray that it will be safely brought to market soon and that you will still qualify for it.
Wouldn't it be wonderful if you didn't need it?????? If you want to continue the conversation, you can private message me.
Re: Just diagnosed with reoccurrence...
Hi Karen, I am sorry to hear of your reoccurrence... I don’t have ovarian cancer, but my mother does and she was diagnosed with stage 3 back in 2016. Hers had also appeared in the lining of abdomen. She was 83 and otherwise in fantastic health. However, she was not given a good prognosis and was encouraged to just allow nature to take its course. She actually requested to try chemo, and the oncologists reluctantly agreed to 1 treatment. She did so well she pulled through 6 and “rang the bell”after her last appointment. It wasn’t easy but she did remarkably well- much to their surprise. Well, she just turned 86 and a very small “ nodule” has just shown up on a CAT scan, and they are now recommending removal of it with a few more cycles of chemo to follow up. Her CA 125 marker at the beginning in 2016 was 1400. As of May, 2019, her CA 125 is 11. She is in such good health otherwise, and continues to surprise everyone. The point of this: it’s such an individual “condition”, and as much as reoccurrence is both unnerving and irritating, you are in a tremendous position to reach for an inactive state again. You have also had a long period since 2015. This is good news. You are a survivor and the options for treatment are encouraging and advancing. Keep your immune system in top form and continue to practice good health: lots of fresh fruits and vegetables, reduce sugar in any form, and practice good relaxation. This is a time of renewal. There are many, many success stories to read and continue to absorb them. Never give up on hope and reach out to everyone. Age is never against you ...and you’ve got the positive support of family all around you. Your mind is a powerful tool - listen to it ...keep your faith and enjoy life. There’s much more ...🙂 Keep your spirit up.
Re: Just diagnosed with reoccurrence...
Oh my goodness Trinity, you’ll never know how your note touched my heart and lifted my spirits. My husband and I are driving through the beautiful hills of Tennessee in our way to a wedding in Jasper, Georgia. We decided to take this trip prior to me starting my chemo treatments in the second week of June. Yes, it certainly is a time of renewal and although the thoughts of chemo again are a little overwhelming at times, my faith is strong and I do believe God’s not finished with my journey just yet, every day is a blessing 😊... your beautiful story of your Mom’s journey is a breath of fresh air and a huge encouragement to me. Also your advice on diet and my emotional state is duly noted. I send your Mom my most heartfelt good wishes for continued good health and to you, you are a devoted and loving daughter who is an integral part of your Mom’s success, you are a treasure I’m sure she values beyond words. I will share this with my daughter, she’s 52, my heart and inspires who fought her own battle with breast cancer several years ago. Thanks again Trinity, we’ll chat again 💕
I, just as you, am to receive no more regular Ct scans as my CA 125 marker is sensitive and I am a symptomatic. They will still keep a close eye on me for which I am grateful.
They have not lowered the dose of Lynparza. I do not believe that is a protocol yet.
I had noticed that when I took Imodium when the diarrhea was severe, that the nausea and backache went away as well.
So, they put me on Questran in the morning to bind the bowel (which also lowers my cholesterol- not that it was out of range but on the high end of normal) and Zantac at bedtime to reduce acid production at night.
It’s like magic! Seriously. I even want to eat salad again!
Yhe drag on me from the constant I’ll feel is gone and my energy rebounded. The best result is the end of the listless quality I had come to accept as normal.
I am interested again.
I am deeply appreciative of my doctors who keep listening to me and are actively interested in not just finding solutions but in my whole wellbeing.
I'm glad you mentioned bloating because I ve had that side effect all through chemo and the four mo I've been on lynparza. The positive news is the drug is slowly reducing size of tumors! Maybe that's what's going on for you.
Re: Let's get started! Come and introduce yourself
Hello! I am a 38 year woman who was diagnosed with fallopian tube cancer in January 2018.
I blogged my journey here:
Coles notes: I had a tumour that presented itself in Dec 2017 and grew very quickly. It was removed in January 2018 and the cancer diagnosis was confirmed. Full hysterectomy performed. During the surgery my ureter was nicked and I had a nephrostomy bag from February to July 2018. Did chemo from Feb - June 2018. Had an adverse reaction to paclitaxel so they switched me to docetaxel with the carboplatin. In July they attempted to repair the ureter but ended up just removing the left kidney. At that point they saw no cancer left over - yay! Remission.
Had my follow up in January 2019 and my CA 125 levels were back up to almost one thousand. Had an abdominal/pelvis scan which revealed nothing. Pushed for a chest scan, which revealed something. Enlarged lymph node in the right armpit (axilla). I had a biopsy on March 15th and now I am awaiting results.
I am going a little crazy today - which prompted this post - hello! Every single ache and pain that I am experiencing I am relating to a cancer recurrence. I could just have a cold. My hips could hurt because I went running yesterday. Etc etc. OR it could mean that the cancer is back.
Re: Chemotherapy symptoms, combined carboplatin/paclitaxel
... yes it is a tricky combo and it may take some time to figure out how to cope with the side effects. One of the nurses mentioned to avoid caffeine on that day to help lessen the restless legs; certainly tried it and it seemed to help.
Days post chemo, sometimes the rash shows up or welt like bumps (hello acne again)
as always - check in with your team about anything new or bothersome so they can assist in the management of those side effects.
Re: ca125 numbers
I live in Calgary, Alberta and receive treatment for my recurrent Stage 3B high-grade, serous ovarian cancer at the Tom Baker Cancer Center. My CA125 was tested in July, 2015 and was 655, and it dropped to 12 following total hysterectomy, removal of two large ovarian tumors, and 6 months of carbo/taxel chemo regimen. My Oncologist orders my CA125 tests every 3 months. She explains that this is not the end all and be all of cancer surveillance, but one tool that she keeps in her tool box. I was doing very well for 30 months, with my highest CA level being 14, but in July, 2018 it rose to 20, which made me panic. My Doctor, the head oncologist of the gyne clinic here in Calgary, actually gave me a "talking to" - we have a very healthy therapeutic relationship and I trust her, but by October my CA125 was up to 275! My intuition as a patient and my ability to be an "empowered ovarian cancer patient" saw me get a CT scan within 48 hours, and we initiated second-line treatment with carbo/caelyx within the week. If I had not had the CA125 test regularly, as scheduled by my Oncologist, this recurrence might have been missed as my cancer is "seeded" in the peritoneum now, and not a solid mass. I encourage your sister who has moved here from Saskatchewan to keep asking for this surveillance tool, and to get a "second opinion" if necessary. I understand that the test is expensive, and that AHS may be reluctant to fund them, but this is OUR life we are dealing with here. Best of luck to everyone living with, and thriving with this unfortunate disease.