I have always tried to be positive and strong but I fear this last diagnosis 3 reoccurrence in less than 3 years, has really kicked me in the gut. I have had one round of Cisplatin/Gemzar and then one week later just Gemzar. The pet scan showed all in my lymph nodes and around omentum and possibly around bowel. CA 125 only 30. I feel it is not working but will not find out until a week and a half when the do then next blood draw at Dr's appointment. I was diagnosed Dec 2019 had extensive surgery Carbo/Taxol 6 cycles with avastin for one year. Came back in 8 months then Carbo/Doxil from June 2021 to Nov 2021 in remission and on Olaparib from Jan until June.....knew by rising CA it was back in May of 2022.....I felt it. CT scan in May did not pick anything up. BUT with pet scan in June found everything!
I am completely devastated and feeling there is nothing left but to give up................Dont we all just want a little more time. It is so hard when everyone family included don't understand how weak I am physically. No matter how hard I try to explain it. I am fortunate that I don't have underlying issues............YET...............but good gracious it would be so wonderful just to have one year of NED but I doubt that will happen as we all know the sooner it comes back the less time and options you have.
I was initially STAGE 3 C HGS NO Mutations ......nothing. They even sent out blood sample to specialty lab and still nothing that matches up to fight it..............
I am being treated at MD Anderson which is supposed to be an amazing cancer center and was so very hopeful
Losing hope in San Diego
Debbie
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Summergold2
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I’m sorry you are feeling so down, Debbie. I’m not far behind you. I had my debulking in June 2020 and just finished chemo for my first recurrence. Now I’m stage four. It’s in my liver. The time off chemo is so valuable! Like you, I’m BRCA negative. My tumor was tested and no mutations. Covid has made things even tougher for us. I so want to go out for a nice meal. But even though I am vaxxed to the max, I’m still too chicken. MD Anderson certainly does have top ratings. I hope they have something else to help you. ❤️Sashay
Thank you Sashay I am keeping you always in my thoughts and prayers and hope that we can both qualify for the clinical trial! we certainly do being braca neg kinda frustrating there isn't much for us........
You have had enough to deplete the emotional, mental and physical resolve of anyone and the fact that your family do not "get" where you are at is making things more difficult. Please find an emotional counsellor where you can express your feelings with someone who will take them on board so you can get your "fighting pants" back on again. A big hug, Emma x
Hi Summersgold,I'm pretty much in the same camp. I'm on 4 th line chemo, 3 rd recurrence with diagnosis September 2019. I was just lying in bed thinking how lovely it would be to wake up and not feel so sad and worried/ frightened.
I have always been so admiring of the courage and tenacity you have shown with all your trips. At times cancer has definitely had me as well as me having cancer but I don't feel that's the case for you. You have continued to live your life on what looks to me like your terms and how strong and wonderful you must you be to do that.
Re the tiredness. My oncologist had a frank conversation with me about this regime. I'm on Carbo/ gem now. For me she said that if the chemo worked the double dose might for example lead to 20 percent reduction in tumour but the single dose Gemzar would only make a small incremental difference. She spent a lot of time highlighting that if I just had the double dose and dropped the single I would most probably have a better quality of life during the regime. It may be that different outcomes are being sought for you, ie trying to get back to NED which is no longer a realistic option for me but if you are balancing qol with chemo maybe you could have a discussion about the single dose to consider the benefits versus downsides. Maybe you would feel stronger and a bit better.
Walking a pathway between life and cancer is so, so tough. No one understands unless they are doing it Be gentle and kind to yourself and know what an inspiration you are, whilst knowing you are also entitled to feel exhausted and down.
Dear Debbie please don't despair the going gets tough at times and your really going through it.Can you ask for immunotherapy l have a dear friend that just started on it. But like everything l look things up and it seems to be very effective
Ask for a trial please there is light at the end of the tunnel. Get a second opinion 3rd if necessary its your life . Different Doctors Different opinions. I was similar in the respect l had a CT scan and it didn't show anything but the Pet scan did why don't they just do this in the first place. Get your positive head on and get 2nd opinion you might be surprised. I wish you love hugs & positive thoughts SheilaFxxx
Don’t give up, I too have been feeling down after similar experiences since 2018, stage 3 etc .etc. as you say the family keeps you going. My Oncologist has left me to my own devices recently & although I take Letrozole (breast cancer drug) I am hormone positive, & Atorvastatin, does it help? Who knows I’m still here, feel ok & don’t look forward just a week at a time. Stay strong & try to work on your positivity, not easy but who knows what does work, we’re all different in our reactions!!!! Cheers Iside x
I remember sitting in hot baths all night the 2nd day after my first chemo. I was crying when I called my oncologist. No one told me to expect this pain. He prescribed Tramadol and I took it from day 1-4 of my chemo cycles. I’m sorry you are experiencing this but it’s a normal bodily to reaction.
Please don’t lose hope , Debbie . I had ultra radical debulking for stage 3 in 2020. With 2 remissions and currently taking the PARP inhibitor Rucaparib . My Ca125 is always ridiculously high even after each treatment. At one stage about a year ago. I woke up about 2am each day in a terrible state . I decided there was no point in living in a state of terror and to just forget the horrors of this disease and to stay positive. Yes, I’m tired and have nausea from the Rucaparib but I try to be positive and live a ‘ normal’ life. There are many new treatments being trialed all the time —eg - immunotherapy , vaccines and my hope is that one of them will prove to be effective .
Do you have a support group locally where you can chat about your worries?
Do you have the option of Rucaparib which is a PARP inhibitor for BRCA negative patients ( like me) ?
I’ll be including you in my prayers and never give up . Lyz x 🥰❤️🙏🙏
thank you Lyz......... I was on Olaparib and I believe due to it not working I am not able to do another parp. I was really good through first and second reoccurrence traveled to Galapagos, Sicily, and Portugal...........not so good now we are scheduled to go to Ireland for 2 weeks in Sept and my Onc team feel they can work the chemo around it ......problem is I believe cancer is thumbing its nose at. But will have to plod on and enjoy Ireland! It will be amazing.
Debbie,Your experience is very similar to mine. Same diagnosis 3 years ago and I am now facing my second recurrence. Both chemo regimens have been carboplatin/taxol and then I went on Avastin for 10 months. It did a great job of keeping me free of disease progression until it stopped working two months ago. Now I'm back on chemo -- carboplatin again, this time with Doxil. My hospital is Johns Hopkins and I feel well cared for there, but, like you, I was knocked flat by the latest recurrrence.
It is very HARD to stay hopeful in these circumstances!! So I am trying to scale back my expectations and do my best to live fully one day at a time. My 2 sisters live far away and one of them just spent a wonderful week with me -- the other will be coming next month for a visit. Six months ago I moved to live much closer to my son, daughter, and granddaughter and now my frequent contact with them means everything. I try to find opportunities to be with people who make me laugh and bring me joy and I find that if I can do at least one small thing every day to help someone else it helps a lot. I live in a senior care community and so there are plenty of opportunities to spend time with someone who would otherwise be very lonely.
For me hope lives in these small daily experiences. Yes, I want to weep when I think I might not live long enough to see my little 3-year-old granddaughter enter elementary school, but every minute with her right now is the best minute I could ask for.
Thank you for your post. I'm so sorry to hear that you are feeling completely devastated at the moment. I can see that many members of the forum community have shared their thoughts and insight with you, which I hope has been helpful.
Please know that the Ovacome support team are also here for you if you would ever like to talk through your feelings and current situation. You can reply directly through this forum, email us via support@ovacome.org.uk, call our support line on (+44) 800 008 7054 or (+44) 7503 682 311. You can also schedule a 1-to-1 video call via Zoom, WhatsApp or Skype if that may work better for you: ovacome.org.uk/forms/1-to-1... . We’re here Monday – Friday, 10am – 5pm (U.K time).
In addition, our Staying Connected programme consists of a range of workshops, support groups and events for those affected by ovarian cancer. Our online support groups provide a safe space to connect with others who may be going through similar experiences, share information and receive support. We often receive feedback about how valuable people find it to speak to others who understand first-hand what they are going through. To learn more, please visit: ovacome.org.uk/pages/events.... You would be really welcome to join us.
I’m aware that due to our differing time zones, these events may not be convenient for you. I’ve done some research and can see that there are several U.S based organisations providing support for people diagnosed with ovarian cancer:
- sharecancersupport.org/cale... – Share Cancer Support also offer a range of support groups via Zoom although I believe these are in Eastern Time rather than Pacific Time.
I also wanted to let you know about our information resource about treatments for relapsed ovarian cancer which can be found here: ovacome.org.uk/treatments-f... .
I hope this information is useful and that your upcoming blood test and doctor's appointment go smoothly. Please don’t hesitate to get in touch with us if there’s anything you would like to talk through or if there’s anything we can do to support you.
Thank you so much Annie I have always always found your website and support comforting and absolutely amazing! You are always there to help and guide all of us no matter which country we hail from. Bless you all for everything you do and the open arms, forums, and information you give ...................YOU at OVACOME are a true life saver thank you so muchwith love
Thank you so much for your reply and for sharing this positive feedback. I'm very pleased to hear that you have found Ovacome's services comforting and helpful.
Please do let us know if there's anything we can assist with.
I’m sorry you’re feeling low. Sending you a big hug from the UK! I’m in a similar state. I had my big op in Dec 2019 then 6 months of chemo 2020,2021 with constant recurrence. The 3rd try this year has not worked for some “bits” so am just beginning another 6 months of gem, which has floored me as I was looking forward to a chemo free period! Your post has put things into perspective for me. I’m planning a year of trips regardless of travel insurance costs! The best boost of all is enjoying the moments of love and kindness from friends and family.
I hope you get onto the trials. I have saved the link. Great news from USA! I didn’t know there were parp inhibitors for us BRAC neg folk so that’s interesting.
Thank you for sharing your feelings. Know that you’re not alone💖
This is a dreadful disease isn't it? I am so glad to hear you are planning trips! We have one planned for this September to Ireland. My Onc team are doing everything they can to make it so I am not so nauseous on the trip even going so far to bring me in the day before to hydrate me up for the 12 hour flight! I am blessed. Enjoy every bit, make sure you rest and be good to yourself! Do things that make you happy and serene. The day before I went into my 2nd round of Cisplatin and Gemzar I took both my horses to the San Diego fiesta island and went for a ride and swimming. Needless to say my Doc and Pharmacist along with the nurses were mortified! ahahahaha. You see 4 days before my platelets were at 34 so any fall could have been fatal. Well I would have been doing something I loved AND I could have tripped and fallen here at home .......right? All ended well as by the time I had my appointment they jumped to 141 and was able to get the full regime of my chemo.......along with a lot of chastising. I hope after your session of Gem that you will get a reprieve and be able to enjoy carefree time! Have they tried Cisplatin with Gem? I hope also you are looking into trials as well. I am but not much for those of us who have no mutations and have 2 or more reocurrences.
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