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I was diagnoised with Stage 4 in March 2009. Had successful debulking surgery. Went on Carbo/Taxol for 6 rounds. Lowest my CA-125 would go was 1840. After treatment Ca-125 contuined to rise. Right now my Ca-125 is 6010, starting Doxil/Advastin tommorrow. My doctor says I have persistant disease. Has anyone had this happen. if so what are the treatments.
Thanks You So Much
Shari
Cancer Surgery Hysterectomy Pain Cytoxan Glucophage Avastin Ovarian cancer
Shari, So sorry to hear about your numbers. I just finished my last treatment and hoping to get into remission, but CA 125 not within normal levels. Do you know if you have ascites that could be raising numbers? The Avastin should help.....there are many women on this website that have had great results with avastin.
GOOD LUCK,
Pat
Pat,
My Cat Scan that was done in September showed no Ascities. What are your numbers. What is your Stage and Grade?
Shari
Good luck. I hope the new treatment is just the ticket to get you into remission.
Hi Shari.
I am Stage IV (at the time of surgery was stage III thought to be optimally debulked, but before I could start a clinical trial of carbo/taxol/ and avastin or placebo, I had to have a CT scan and it revealed someone didn't see 3 tumors on my liver, the largest one app. 8 cm). The trial continues on with either avastin or placebo for a total of 16 treatments of just avastin or placebo alone. It is believed I got the avastin with the initial carbo/taxol and then afterward (I will be done in December). The tumors on my liver shrunk with the first six treatments of the combined medication and continue to shrink while just possibly on the avastin until now they are all under .5 cm. My physician terms my disease as stable. My Ca 125 last time was 7. I did not have a Ca 125 pre-op as they did not think I had OVCA, but immediately post -op it was 313. I have had good luck with the avastin, if I am truly getting it. My side effects have been minimal and very do-able. Best of luck and success with your treatments!
I'm IIIC and had the basic carbo/taxol after my surgery and went into remission for 6 amazing years. Then for my first recurrence I got carbo/taxol again and then we switched to carbo/taxotere for a few treatments because of neuropathy. That all got me 10 months of remission.
I'm in my second recurence now and this one is tougher and so far I can't seem to get back into remission. I had Doxil for 8 months and that worked up until around the 6th month. Then I had Topotecan for 2 months and that didn't do anything at all. Now I'm on Avastin and Cytoxan (a daily pill). I've had 2 treatments but no blood work yet, so I don't know if we're making any progress. I do feel better and the twinges on my side have gone away, so I'm hopeful.
My doctor calls it a chronic disease, so I understand that it is something I will probably always have to deal with. My numbers have never been as high as yours, but that doesn't mean anything because each person produces a different level. I really hope this new combo works for you and you can finally see those numbers go down. All the best.
Shari, I never made it to remission either. My surgery was in 6/08 and I was in the same clinical study as Sunny01 but could not continue because as soon as the platinum drugs stopped my CA 125 began rising. Soon after, a biopsy confirmed malignancy in the groin area. I have been on Topotecan with no success, Gemzar plus Cisplatin which almost killed me and now Gemzar as a single agent. I think my CA 125 is in the 3000's. I have a pleural cather in my right lung as it is 2/3's collapsed and I use oxygen almost 24/7. That said, I drove myself out for lunch with my sister the other day and try for as much independence and dignity as long as I can. Will keep doing treatment if it makes sense and gives me more quality time meanwhile knowing that it is limited. I have already been in touch with hospice to prepare and have peace of mind for what is to come.
Hoping you find your way to cope with this beast.
Sharon
Shari, am so sorry you didn't get into remission. I understand how disappointing that is. I had first surgery in 4/2004, suboptimal debulking and have never gone into remission, IIIC, grade 3. But I have been fortunate to have some chemos that have controlled the growth and some tumors have come and gone. Have had many different chemos and will keep trying others until it make sense to stop. It is a chronic disease for me.
I hope you have a good doc who is willing to keep trying chemos for you as long as you wish. some on this site have lived many years with many chemos. I wish you the best. Mary
Shari, I can only imagine how you feel not going into remission. Mine was short, but at least I had one. I have come to the realization , that this is my new reality. It is something I know I'll have to deal with the rest of my life. And I will. Just like you will, and all the others. As we have seen, most of the ladies on here live a pretty normal life. We may have a few setbacks, but we are still living a pretty normal life. As normal as it can be anyway. Hope this new treatment works for you. Hang in there, sweetie. We're all pulling for ya ;)
You have nothing to lose at this point. I'm stage IV with very few options. My tumor has mutated and is now resistant to everything except maybe Cytoxan or Hexalen. I'm using alternative therapies and they seem to be working. My CA 125 is rising by only 3 points per month. I'm taking low dose naltrexone 3 mgs at bedtime, Glucophage ER 750 mgs in the morning, AveMar: one envelope a day, and ImmPower, 2 capsules twice a day plus the diet recommended in the Anti-Cancer book. You'll need a doctor's prescription for the first two ingredients.
Hi Shari. I was just diagnosed again with ovarian cancer. My first one was in May , 2005. I had a complete hysterectomy and a temporary colostomy. It was reversed in another major surgery in Nov. 2005 after several months of harsh chemo treatment. My cancer was very aggressive and had spread into the colon at that time. Finally I went into remission until last year in Nov. of 2008 I had my first recurrence. It was contained this time but the tumor was growing rapidly. After another terrible operation and rough recuperation from an open abdominal wound they created just before I left the hospital I had more rounds of chemo from Jan, 2009- April , 2009.
After many side effects from the chemo again, I finally got into remission . I prayed that this time it would be longer. Some of my doctors said they felt my cancer would always come back. I was quite discouraged and tried not to believe them. One needs to cling on to some hope!
I was feeling okay for a short while and being monitored with blood work. My CA 125 tests showed
# 6 each time.My other labs were fine as well. Recently in Sept. I had a routine PET/ CT Scan so they could take out the port catheter. Everything was fine except for a thickening of the rectal wall. Upon a rectal exam , my surgeon felt a growth. He ordered an MRI on my pelvis and one on my abdomen. Both came back fine as well as more labs.The last test was a colonoscopy done a week ago. That showed a rectal mass about 3 cm. The final pathology report came back yesterday indicating this is related to the ovarian tumor. This Monday I will see my surgeon as a follow-up and next steps. I feel I hardly came up for air since last April and now this horror all over again? When does it stop? I know it will eventually kill me . How many more surgeries will it take and chemo treatments to endure , recover from and repeat and repeat? I am trying to remain hopeful and positive but cannot. This is affecting my family and friends so badly as well.
Currently I feel the pressure and pain from the rectal mass as well as my deeply scarred bloated abdomen. Between my CA 125 being such a good number and the way I appear with such an outward healthy look to others , it is so puzzling how I can be so sick! How many times can one go through this physically and emotionally? Even though I was in remission twice, it doesn't seem like enough or if it will ever happen again !
Shari, I will keep positive thoughts for you. Let's hope our lives can turn around for the better soon.
Sue
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