I haven’t posted much about my journey. I am in the USA. I have never been in true remission. I am braca neg, her2 negative, folate on at 60 % HGS. No mutations in cancer tumor or me. Diagnosed Dec 2019 stage 3c now stage 4 metastasis
Here is how much I have fought:
Dec2019 full debunking surgery
Chemo: carbo/taxol/avastin Jan 2020 avastin continued until April 2021 when reoccurrence
Carbo/doxil from May to Nov. 2021
Olaparib until March 2022
Cisplatin and Gemzar April to Nov 22
Jan to May 2023 cancer spread from my lymph nodes to my liver and exploded cytotoxin, Keytruda and avastin to June 2023 was in a wheelchair and making preparations for my death yes it was that bad
Switched to Abraxane had 4 months June to October of it working started walking gained strength quit working in October!
I need to drain ascites every two weeks 3 to 5 liters
My team are going to try Elahere and Avastin but Elahere needs folate of 75% I only have 60
I am trying to get into a trial in Tucson Az as there is nothing lease my team can do The trial team hasn’t contacted me at all and I have sent them two emails! There isn’t a person assigned it is a company you need to contact
I am reaching out as I am scared that this is the end and I am not ready to go I have fought so hard and had such great support from my family and friends!
Does anyone have any advice or suggestions on treatments?
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Summergold2
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I’m so sorry to hear that your team are unable to offer you any further treatment and that your efforts to contact a trial team haven’t even been acknowledged.
I don’t have any advice about treatments but wonder if the Ovacome advice team might have some suggestions about the best way and what content any communication from yourself to the trial team should be to maximise a response.
As you said you’re not ready to go yet and have fought this far…keep your fighting spirit.
Dear Summergold2, all your commitment and hard work to face this sounds incredible; I really admire your courage and tenacity. Whilst my journey is very different, what we do share is a love of life, love of family and friends and a deep desire to experience more life. I am writing to simply say that I am finding, and have found for some years (I was given no chance or just a tiny percentage of surviving more than 2-3 years over 10 years ago) that accepting/ helping myself accept that I love life, helps me enjoy the life in each day; as I have no idea how many more I may have ahead.
I sincerely send this greeting so you can feel that others of us hope you will experience enough joy in each day to help you face the challenges ahead. I have no religion, just an overwhelming appreciation of the goodness within many fellow human beings and a realism about those few who are more selfish and ego-centric! I seek out the company of the ‘radiators’ loving life and hope/work for the best in each day.
Ovacome may not know the US detail but the team know the ‘human-ness’ of experiencing this disease. Take care and be kind to yourself. My warmest wishes. X
Hi, I’m so sorry for all that you are going to. Being in the U S are you anywhere close to Milwaukee, wi? There is a great oncologist, Dr. Bradley at Froedtert Hospital. He has a trial going on for OC and etc…you may want to look into it. Hopefully he will be able to help you. Stay strong! You can do this…j
You should be able to call the hospital and ask for the oncology department and explain your situation. They will inform you about the trial, last time I looked it up they were in stage 4, that was a while ago so maybe it's up for approval by now. Sorry I don't have anymore information to give you. If you can go on line and look up hospitals in milwaukee. Wisconsin the number should be there and they will connect you to that department. I pray they can help you, please don't be discouraged. Stay strong, you got this!
Hi. It sounds like you have been through a lot. At this stage the only suggestion I could make would be to think of the cancer not as an enemy you have to "fight" and kill, but as an unexpected, even unwanted visitor you have to befriend and accept. There is healing power in that acceptance beyond anything we can understand. Do you have the time now to work on your mindset? If you have been looking only to drugs for healing you may think me silly, but I stopped work after my first recurrence and spent weeks meditating and praying about loving my cancer and all it had taught me. My affected lymph nodes shrunk over 50%in 6 months of no chemo. You can still do chemo and change your "fight" dialogue. It is not helpful. The tumours are part of you.
Secondly, my question to you is how long were you on Keytruda and was it effective? Did you have tumour testing done. Are you dMMR or pMMR and what is your PD-L1 score?
Good questions to ask NanB12 I will do so. 5 months on Keytruda and cancer continued to grow. Yes initial tumor tested and lymph node 1 year later tested no mutation. Don’t know what PD L1 is Can you let me know ? dMMR pMMR ?
It looks like that the moderators really edited and deleted a big part of my reply.
Since you are in the US I would highly suggest that you get a second opinion from MD Anderson or Memorial Sloan Kettering in New York. In my personal experience, dietary changes make a huge difference. Read articles about it. What personally worked for me is giving up all dairy and animal products. It has made a world of difference for me. I am sorry to hear that Keytruda did not work for you. Do you know the results of your tumour testing report? A tumor testing report tells you if your tumour was dMMR (MisMatch Repair deficient) or pMMR (MisMatch Repair proficient). Keytruda works very well for dMMR tumours. For pMMR they need to add Lenvima tablets which actually are not easy to take. Have severe side effects, but a second opinion is important. This is your life and you need to take charge of it. A plant based, dairy free diet has done wonders for me. I try to focus on anti-oxidant rich foods too.
Wishing you all the best in this very tough journey.
Sunmergold2, what an incredibly strong person. I haven’t been on here much lately, but saw your post pop in my my daily ovacome emails.
I can’t give much specific advice on treatments, although I didn’t see you mention Olaparib? Having had my Mum go through this, I just want to advise don’t give up the fight. If there is a company, don’t stop those emails. Phone them, perhaps even social media if they have it. I had to do something similar for my Mum, the fight was constant but we didn’t stop. Hope you have plenty of support from friends and family too, if so get them onto it too.
Also not sure if you have asked for a second opinion from another consultant, hospital or team, perhaps something to bare in mind.
My thoughts are with you from across the seas, sending love and strength xxx
Thinking of you Summergold2. In spite the hospital treatments, would you like to try any holistic treatment? We never know, it may work for you. Also, may try to consume some natural foods which support the body fight against cancer.Keeping in prayer is very helpful for many people but its up to you. I just hope there will be positif progress for you.
Me too I am one of those people who always ate healthy grew my own food canned etc. exercised ride my horses consumed very little sugar don’t like cakes and cookies love to bake not to eat😃 my oncologists tell me if it wasn’t for how strong my body was going into this it would have given up long ago!
You are doing so well Debbie. I am still recovering from the major surgery this year which removal the tumour with all ovaries, uterus, both fallopy tubes, periteneum, some bowel tissues, cervix. I am grateful the tumour has been removed just before it spread. My condition is borderline since the operation. Then on CT scan 5 month ago, they found another enlarge lymph node at my back, so I research for things which can fight against cancer cell. I ate 1-2 cloves garlic every day, drink a couple glasses of organic carrot juice without sugar, also consumed supplement such as mushoom complex. Then I went back to royal Marsden hospital for my routine check up: blood test for my tumour markers and CT scan, thankfully the blood test for tumor markers and scan results recently show normal again.
So please do not give up, I am sure there is still a chance for you to get better. If you don't have any allergic and contradiction with other condition, it may be worth to include some remedy and supplement which many scientist has proved those stuff could improve anybody with cancer. May also to try homeopathy near your home, but please research first, don't just buy anything only for their business profit. Its worth to do some research to find out whether it works or not for your body. Or you may try yourself some supplement which well known by cancer research scientists could help the body against cancer cell, as long as suit to your body. So far I heard and read from the scientists that some foods which are strong against cancer cells such as extract garlic, mushroom extracts (reishi mushroom), extract caretonoid from carrots, bromelain from extract pineapple stem, curcumin from extract turmeric, tomotoes, broccoli along side the medications. But please check first, just in case someone has certain allergic, low/high blood pressure, pregnant condition, breast-feeding, etc.
I am a fighter too and prayers help me to cope. Whatever you try, I wished all the best, be strong, take care lovely.
Have you tried contacting Clearity Foundation? They are based in San Diego, California. They will ask you to submit various information and then they will contact you and recommend clinical trials that are suitable for you in the areas of the country you have designated. I contacted them a couple years ago but ended up sticking with my cancer team for a couple more tries at more conventional therapy. Once I have my next CT results I am planning to contact them again as I think I am nearing the end of what my team has to offer. I have been getting treatment for five years, am now Platinum Resistant and I think though Elahere worked for awhile that it is no longer helping control my tumors. Best of luck in your continuing journey. No matter how hard it seems, try to stay positive.
Thank you Magic girl! I did contact clarity and so did my oncologist she sent all the medical records and was contacted within 24 hours with three possible trials problem is that the one in Tucson which is recommended the company is Daiichi Sanyo and they have not responded to calls or emails Even in the NCT trial number just says it is being conducted in Tucson but does not give lead person or hospital that I can contact it’s terrible.
I think it can call clarity and ask them to find out?
I think your idea to contact Clearity is a good one. U of A medical school is in Tucson so perhaps it's connected to them somehow. Do you live in AZ? I'll be interested to hear what you find out.
The trial people did call me have all my medical records and told me they are not accepting any new participants. I am in a waitlist and then have to wait while they open it up and maybe chose me! I am also going to City of Hope to see if any trials are available. My cancer is so aggressive I am hoping I can find something before it’s too late. My poor husband is besides himself under standably. 4 years is a long time to be on chemo my poor body is so trying.
hi Summergold2, please stay strong and positive. Just remember you are still here because God still needs you to plant seeds for him. Not all of us have same issues but cancer has attacked my body 5 separate times and had chemo 4 different times. I am Brac2 positive mutation gene. My last cancer was bladder 2023. I also just had a ablation due to full blown Afib. Don’t let anything get you down and concentrate on Gods work. Love to you sweet teal friend God Bless
I used to be so excited that I wasn’t braca positive but now? You are one of the lucky ones as there are options to fight the mutations. My tumor has no mutations nothing my body has no mutations so there isn’t an open door to try to fight this
[Edited by moderator] And I am on alternative drug Fenbendazole, from the Joe Tippens protocol. Started taking after a recurrence hit me barely three months after given all clear. So far scans clear. Fenben is also being trialled for use in cancer treatment. Onc okd it for me. Best of luck! I'll private message in case mod has to cut this. Hugs xx
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