Stage lV brca- First recurrence

[Quiemvi]

Hi this is my first time posting. I have stage IV serous and I am brca negative. I was diagnosed last year in November. I had chemo first because they decided I had too much cancer to operate at the time. Then I had the second part of chemo after surgery. I did great and was Ned for 6 months. I felt great after I recuperated from chemo. I started to feel bloated before Thanksgiving and my birthday. I know how to celebrate 😂. I am waiting for an appointment for my first port and will start carbo/Doxil after.

Any suggestion on how to prepare for Doxil? I really hope is not as bad as Taxol. Since I was diagnosed I kept my spirits high but this time Is getting to me. I can’t get up from the couch. Please help me with ideas to motivate. Covid+cancer what a nightmare. Sorry I am so blue

No

[patricia54053]

I'm on first recurrence. Carbo/doxile. I find it easier than carbo /taxol, first week usually feel sick, sweats, rotten taste, but once that's finished I'm grand for 3 weeks

[delia2]

Hi. I agree with Patricia. Use a lot of lotion on hands and feet and rinse mouth with salt or baking soda and warm water. I felt sick for the first week and then fine. It didn’t debilitate me like carbo taxol.

[Quiemvi]

Thanks for the info. How long have you been on it? Can you give my an idea of how long is the treatment and how often you get blood work and scans? I hope is working for both of you.

[patricia54053]

Chemo every 4 weeks. 6 chemo, mine usually takes 3 hrs, chemo slower speed cause I took reaction to first dose , but better now, scan after 3 dose of chemo, all good, tumours shrinking and ca125 going in right direction. Starting parp inhibitor after last chemo in January, goodluck

[yudalef]

dear Quiemvi,

if you finished the carbo+Taxol and waiting to your Doctors

plans for the next steps,

please ask them what is the best options for you

after the first treatment with the Taxol. what they think on using Avastin, and how they check the results of the treatment they offer you to start.

remember that the treatment must be efficient to your body only , so they should think on more ways to reach this goal for you.

[Quiemvi]

I am so upset. I am waiting for the port appointment and got a message saying that they are busy this week and closed next. They can try the week of 1/4/2021. I don’t know if I can wait that long.

[Heidels]

not everyone has side effects from those chemo drugs. I had none, chemo went smoothly, never sick. Had occasional constipation. good luck!

[Quiemvi in reply to Heidels]

Thank you!

[Nadie2018]

Hi Quiemvi. I have a similar story, Stage 4B, BRCA negative, has 3 chemos, surgery and then 3 more Carbo/Taxol. I was not on any maintenance and recurred by 3 months. I was Then trialed on Tamoxifen and then Anastrozole without success. I had a port placed and went on Carbo/Gemzar. The 1 st recurrence is the worst feeling bc you just came through the war and now another battle so quickly. I was scared and disappointed. I needed a break, mentally and physically. Unfortunately, this is a chronic disease and is a constant roller coaster ride. Some people get longer intervals of stability or NED. I am not one of the lucky ones. I hate to say I’m “getting used to this” but I kind of am. What I am grateful for is that there are now so many options for treatment to keep us going. You will get through this and get to a place where your anxiety and fear level off. Embrace all the days you feel good. Hopefully, with the vaccines, we can all start to get out and enjoy life again outside our homes. Try to focus on all the things you’re going to do when you get through treatment. Wishing you an easy time of it. Nadine

[Quiemvi in reply to Nadie2018]

Nadie thanks for your helpful words. Our cases do sound very similar. Where are you getting treatment? I live in the Philadelphia area.

Do you know of a good medicine for the stomach upset do to chemo? I have tried omeprazole and Pepcid but nothing has help.

I hope you are doing well.

Maria

[Noni1973 in reply to Nadie2018]

I admire your outlook Nadine. It's not an easy road by no means. Our mother has been battling Stage IV since May 2019 and while there have been many ups and downs, we have tried to make the most of her good days by doing things she enjoys and talking about the first trip we want to take when this pandemic is over. COVID has sure thrown us a curveball, but we are doing our best to keep her spirits high. Sounds like we might be doing things right. Best wishes to you ladies in the year ahead.

[Nadie2018 in reply to Noni1973]

Noni, A good outlook and attitude are a big part of health. I had my bucket list trip planned for May of this year. A few of my friends were joining me. We were supposed to fly into Barcelona for a few days and then take the train to L’anguedoc France where we were taking 5 days of French cooking classes. That included going to the open markets to buy the food, going to vineyards and olive groves for tastings along with a River cruise. All was booked and then canceled due to Covid. So now, I still have that to look forward to. I look forward to the day we can all get out there to accomplish all the things on our lists. Keep talking about your next trip. Hopefully, it’ll be here soon. Nadie

[Nadie2018]

Hi Maria. I live in Northern NJ. I have 2 Oncologists, 1 in NJ and 1 in Westchester NY. My Westchester Dr was also my surgeon for my debulking.

Can you describe your stomach issues? Pain, nausea, reflux? I have only experienced lack of appetite but may be able to make a suggestion if I know more.

Wishing you well, Nadie

[Quiemvi in reply to Nadie2018]

Hi Nadie. We are not too far 😀. Can I ask why you see 2 oncologist? I would love to find a naturopathic oncologist.

I have acid reflux, constantly burping and always full of gas. I was like that when I was first diagnosed 11/19 and started again before thanksgiving when I had my first recurrence. Now I think iDoxil/Carbo is making it worse. I am taking omeprazole 20mg but I don’t think it helps much.

I hope you do amazing this new year.

[Nadie2018]

Hi Maria. I was referred to my GYN oncologist in Westchester but my insurance 100% covers my infusions in NJ. (I worked at the hospital in NJ and have in-network insurance). So, I continue to see both docs who discuss my case and treatment plans. I am confident in both so happy to have 2 brains instead of one. Only becomes stressful if their opinions differ.

Omeprazole is usually a pretty good option. My only suggestions are eat smaller more frequent meals, careful of acidic foods and alcohol and elevate your head when lying down. Does your doc feel it is side effects from chemo? Are you taking Probiotics?

Nadie

[Nadie2018]

Meant to add...I have been trying to find an Integrative Oncologist as well. I do acupuncture 1 x per week and love it. It is helpful with side effects of chemo. May be helpful for you?? Ask your doc if there could be a chance you may have an ulcer? Maybe see a gastroenterologist? Just don’t want to miss anything. Best, Nadie

[SurvivorSusan]

Steven Rosenzweig is an integrative medicine doctor in Philadelphia. He is doing online consultations now and he takes Medicare and other insurance.

I am on weekly Taxol now, but I have also done the Doxil/Carbo combination. I take L-lysine, 500 mg. twice a day to keep the mouth sores away. It really works for me. I also take peppermint oil for the gastric reflux.

[Quiemvi in reply to SurvivorSusan]

Susan have you gone to Dr. Steven Rosenzweig? If so please let me know how he helps you. I have been thinking about IV vitamin C.

I will try the peppermint oil. Thank you

[Paulas7]

I’m an active ovarian cancer going thru chemo actually tomorrow. I would lay down your heart and ask forgiveness for all your sins. Open you heart and think of how many times you gave praise. Go to church, pray and and open your heart. Accept the docs help. Pray and hopefully it will wok. God Bless.