Hello every one.
My wife was diagnosed stage 4 ovarian cancer and the gene test was negative .Her gene is not abnormal.
Does any body have experience and survive with stage 4 ovarian cancer even with recurring after treatment.?
Please share your story with me if you had same condition.
I am too worry for my little daughter.
She is dependent to her mom.
Darya, Has your wife had debulking surgery? Has the tumor material from surgery been analyzed? This is absolutely essential. For me, genetic blood tests showed no hereditary (germline) mutations but tests on tissue from my surgery showed I have acquired (somatic) BRCA 1 and HRD+! It is not uncommon for advanced OC patients to have mutations in their tumor tissue. This opens up more and effective treatment options with Olaparib/Linparza PARP inhibitor being an option. So get tumor tissue tested and get a second opinion. I have been fighting this disease for 4 years and happy to still be here.🥳
So appreciated for you reply , and I am happy you are fighting this disease very well. I am sure you can overcome...
she didn't have debulking surgery yet , but her doctor told me there is less chance to find mutation in their tumor tissue.(Doctor said around 10 % chance).
we should wait until surgery.
Could you please share with me if you know something important (like diet and ….) to fight this disease?
Did you have chemotherapy before surgery ?
My wife has 3-4 chemotherapy before surgery as the cancer cells have been spread.
Yes, chemo before surgery to consolidate tumors. It worked very well. Then surgery and more chemo. Have recurred twice in 4 years.
Hi Tesla,
I hope you are doing well,
My wife did surgery , but surgeon told me as it was spread they couldn’t remove all that they could see. But they remove major tumors.
Doctor mentioned chemo after surgery and Avastin can help to destroy remaining cells.
Do you have any idea about this condition?
I am too worry about remaining visible cells. The size of them is about 1-2 millimetre.
Hi Darya, I was diagnosed with stage 4b ovarian cancer in Dec. 2016. Like your wife, my genetic test was negative. I had surgery then and started chemo Jan. 2017. I'm still here and I have a good quality of life. I have to continue chemo and get it every other week. I have one day of side effects each time but they are not bad. The drugs they give to treat side effects are very good. After the initial shock of the diagnosis, I got into a "new normal." Now my treatments and monitoring are just part of my lifestyle and I don't think or worry about it that much. I work part-time and am able to do pretty much what I want to do. I guess I am recurrent at this point. After my first year of treatment I got in the normal range (going by CA125). Now it is a bit elevated but stable. I've had a couple of different treatments and dose adjustments with more good possibilities ahead of me if my current regimen stops working. I hope my story is helpful. Best of luck.
So appreciate for your reply and I am happy that you have a normal life and could over come this disease.
Are you taking any medicine like Olaparib/Linparza ,PARP inhibitor ….?
I heard it is possibility to work subjected medicine even genetic test was negative.
My wife is doing chemotherapy before surgery as her cancer was spread.
Were you diagnosed before spreading.??
Again ,thank you very much...
Hi again,
I had surgery before starting chemo but I have met others who got chemo first like your wife. My cancer had spread. During my surgery I had many things removed that had cancer on them: part of my diaphragm, part of my liver, part of my colon, my spleen and appendix were removed and, of course, a total hysterectomy, too, plus some tissues and things I never heard of. They were able to remove all visible cancer I was told. Before starting chemo I got a PET scan that showed the microscopic cancer, which was everywhere. Later the scan was almost clear. My last scan, about 6 months ago, was also almost clear.
I have not been on a PARP inhibitor, although I was considered for one. When my CA125 starting to rise more recently, they decided I should stick with chemo instead. I had been on a reduced dose since I was doing well. Now we increased the dose again and it has stopped the progression so far. I started on carboplatin and taxol, then changed to cisplatin and gemzar (I developed an allergic reaction to carbo). I have been on cisplatin and gemzar for two years in different doses. I'm told my next regimen, if this stops working, will be taxol or docil with avastin.
All my best to you and your wife and family. I am happy to answer any questions you may have if it is helpful and I hope others may have helpful experiences to share.
NS
Thank you very much....
So appreciated..
your story was very helpful and hopeful.
Best regards to you...
Hi Dear NS,
I hope you are doing well,
My wife did surgery , but surgeon told me as it was spread they couldn’t remove all that they could see. But they remove major tumors.
Doctor mentioned chemo after surgery and Avastin can help to destroy remaining cells.
Do you have any idea about this condition?
I am too worry about remaining visible cells. The size of them is about 1-2 millimetre
Hi again,
I am doing well, thank you, and still doing chemo. I am glad your wife has completed surgery and am sorry she has some tumors that could not be removed. I understand your concern and worry. I can share with you that since I got cancer I have met many cancer patients and go to a support group for women with gynecologic cancers, many who have ovarian cancer. Some of the women do have tumors that cannot be removed and are managed with chemo or other treatments. I have known them for the three years I have had cancer and they are doing well with good quality of life with some ups and downs.
I have come to think of cancer in three categories: The worst is the one everyone thinks of first - suffering and dying - but that doesn't always happen with cancer. The second category is people who are cured. Your wife and I are in the third category: Our cancer is managed and treated like a chronic condition. Many of us in this category can live for a long time with a good quality of life. In my support group, three of the women I have met who have ovarian cancer have been in treatment for 5, 6, and 9 years and are doing well.
I have not been put on Avastin yet but probably will at some point. I know someone who was on it for about two years and it was very effective and no significant side effects. I hope it works well for your wife, too. I would not hesitate to have her go on Avastin. I think it is often combined with some other chemo.
Although we would all like to be cured, current treatments are good and very hopeful. You and your wife are in my thoughts. Feel free to contact me anytime.
NS
I was diagnosed three years ago this month. Chemo then successful major debunking then more carbo/taxol. 8n remission six months then carbo/taxol/avastin. Six month remission and now on olaparib. The olaparib doesn't seem to work 100% for me but we believe it is working to keep progression very slow and it is easy on me so we continue. We just added avastin back with the olaparib and ca125 went from 70 back down to 50 after one dose so looks promising. And I feel great. None of the fatigue I had with chemo. Praying it keeps working. Next step cisplatin and gemzar but have been looking into clinical trials at the suggestion of my doctors. I live in LA so lots of choices here. UCLA USC and Ced as ts Sinai. They all have phase 1 trials right now. I am treated at City of Hope. The trials are all stem cell immunotherapy. Stay focused on current care as research is growing rapidly in this field and life is good with current treatments out there. Blessings and learn to take it day by day. No point in worrying about future you will lose today's joy and what doesn't exist today will by the time your wife needs it...
Dear friend,
I hope you are doing well,
My wife did surgery , but surgeon told me as it was spread they couldn’t remove all that they could see. But they remove major tumors.
Doctor mentioned chemo after surgery and Avastin can help to destroy remaining cells.
Do you have any idea about this condition?
I am too worry about remaining visible cells. The size of them is about 1-2 millimetre
Dear Daryal, I have stage 4 high grade serous cancer. I chose not to have the surgery as the side effect would have been very poor for me re quality of life, see my history. I had three periods of chemo over the past year (diagnosed at stage 4 last Christmas but don't know how long I actually had it as I was told for a long time that I had IBS! I was then prescribed letrozole, this has unpleasant side effects but worked in that I was told at the beginning of December that my tumour had shrunk by 1cm. I am therefore continuing on this and will be monitored, next review will be March 2020. Apart from side effects I feel fine and look better! I plan hopefully on living many years despite the prognosis people get with OC! The other forum I go on is the Macmillan one which has many sections including one for OC. These forums are full of people living much longer than their prognosis. They are also full of knowledgeable, supportive people who offer advice, humour and share different experiences. I believe that this support has been crucial for my well being when I am having a low period or feeling scared. I recommend them to your wife. There is also a support group there for partners and carers such as yourself.
I worry about my husband and what he is going through re me, your wife may well feel the same way which is where people on the forum may help. If you are in the UK I would also recommend visiting a local Maggies centre, or any other cancer centre, if you have one.
I wish you and your family every good wish, luck and hope in managing the future.
Please keep posting on how you all are and remember you are not alone!
Love and hugs
Pat xx
Thank you so much,
So appreciated,
We are living in Canada,
Do you have ovarian cancer?
My wife cancer is spread to abdomen area.
I think her condition is different than you?
Isn’t it??
I was diagnosed 6/13 stage 3c, after about a year & 1/2 i had my first recurrence. Went back on chemo and went into remission. About a year later I recurred I can’t even remembered if that was the time I stopped going into remission, I’m still here🤞. I don’t have the braca gene but other genes that are associated with ovarian cancer. You can ask dr to work with foundation 1 in Boston. They will test the tumor. You should have slides at the hospital. My suggestions. Test blood for folic acid and b6. They help your platelets. Make sure you have the best dr & hospital you can find. Research things yourself. Don’t take no for an answer. You can get radioactive radiation it’s 5 days of getting zapped. Push for it if you think you need it. I did it on my liver. Also, ovarian does Metz to the brain as women are living longer. Get a brain mri. I had a lesion and 1 zap & it was gone. I’ve also had 1 lesion cryoblated which is freezing it. Think of it as a la carte. It’s a roller coaster. The best tip from my first dr. Don’t look at statistics. Good luck. Be kind to her. Give her hugs, she might not be able to do all the things you used to do, make new adventures. Try & fold the clothes as much as you can, empt the dishwasher. Encourage her to have her friends over. 💙
I hope you are doing well,
My wife did surgery , but surgeon told me as it was spread they couldn’t remove all that they could see. But they remove major tumors.
Doctor mentioned chemo after surgery and Avastin can help to destroy remaining cells.
Do you have any idea about this condition?
I am too worry about remaining visible cells. The size of them is about 1-2 millimetre.
After my surgery I still had cancer that they couldn’t get to. After 6 weeks I started chemo. Back then it was carbo/taxol. I went into remission. I’m on avastin & doxil now. I had my 1st treatment yesterday. What else besides avastin are they going to give her? Avastin restricts blood going to tumours. Her blood pressure might go up from the avastin. Her cells are still small so I think she should have a good outcome. Does she have a port? If not I would get one. There also might be scar tissue. Please have her stay away from popcorn, peanuts and pistachios. Do as much research as you can. Stay with articles published by institutions like Harvard or John Hopkins. It’s just very scary. Let me know if you have any more questions. I wish you the best! Don’t give up hope.
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