new cancer patient

ggggsister
ggggsister Member Posts: 38
edited March 2014 in Ovarian Cancer #1
Hi to everyone. I hope you don't mind me joining the chat group. I am not a cancer patient. My sister, however, is. She was diagnosed with Stage 3 ovarian cancer in April and finished her 18 chemo treatments on Sept. 5. She is not loving life right now. I have so many questions about this, but I feel really uncomfortable talking with her about it. We tend to put on a happy face with each other. My biggest question right now is, is there really hope? Her CA125 numbers were nearly 10,000 (yes, 10,000) in April before surgery and then rapidly dropped. Just before her last treatment, her numbers were 26! Now, three weeks later they've spiked to 71. Her doctor (whom she calls Doogie because he's too young and seems very inexperienced) wants to remove her port. He says inflammation from that could be causing the spike. I'm counting on that with all my heart. Do I have my rosy sunglasses on again and my Pollyanna hat? Could it be the cancer coming right back? I really want to know what we're dealing with. Any help would be most appreciated.

Comments

  • saundra
    saundra Member Posts: 1,370 Member
    #2
    Welcome and ask all you want
    We are here to answer questions and find answers thru out experience. I will finish my 21 months of chemo next week and be evaluated by CT scan and physical. I was dx 3/2007 with Stage IV. Some of us will have to just treat this disease as a chronic one and be under treatment pretty much all the time. We all hope and pray for long remissions. I will know more about the port removal after 10/15 and the test results. I am interested to know if port inflammation can cause a spike in the CA125 because mine spiked to 29 last month for the first time in about a year. The port site looks OK, but sometimes itches. That is one of the questions I will ask when I have the "what next" meeting the 15th. Some of us have high numbers all of the time, though. My oncologist, Texas Oncology, say three test determine, the CA125, the CT scan, and the physical exam. (((Hugs))) Saundra
  • SMILES1001
    SMILES1001 Member Posts: 23
    #3
    Hey
    well im also the sister of a stage 3c sister. she was diagnosed in april and just began chemo this month. Her numbers have not went down yet. the doc says number dont matter its more less the scans. So for me to tell u dont worry would be a lie cause i worry everyday. as for the doctor thing well your the boss of your health so if u feel he is not capable dont hesitate to fire him.

    Nice meeting you and welcome to the home away from home these ladies are great!
  • mopar
    mopar Member Posts: 1,972 Member
    #4
    DON'T BE DISCOURAGED
    Yes, those numbers can definitely go up due to inflammation, and infection, and stress, on and on. CA125 is used as a part of the whole picture - CT scans, symptoms, etc. That is absolutely wonderful how much your sister's level has come down! So, be encouraged, stay strong, and ask as many questions as you'd like. Maybe your sister would like to visit here as well - lots of wonderful ladies loaded with years of experience, prayers and hugs!

    God Bless you.
    Monika
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #5
    Hugs N Prayers
    I am so sorry your sister has to be on this journey. I echo what the others have already said :-) and also encourage you to have your sister stop by too. Sending lots of prayers for you both. Bonnie
  • floridajo
    floridajo Member Posts: 480
    #6
    Hello
    Your sister is so lucky to have you and do not hestitate to ask all your questions we will help all we can. First the ca-125 doesn't indicate the volume of disease inside..it simply means that her cells are putting out alot of proteins that the tests pick up on. She is very sensitive in other words and might have a above normal ca-125 test even with a ct scan showing no disease. I know of a gal with a ca-125 of 5000 and was staged 1c and then mine ca# was 204 I'm stage 3c and had to have a colostomy at first....so you never know. As Mopar has stated yes any kind of imflammation(some your not even aware of)can cause a spike. You don't mention what her treatments were...most of us start with the "gold standard" of taxol and carboplatin. Many of us are resistant to the carbo..so it doesn't help much..she might have to start with another chemo...I did..after I finshed my 6 rounds of chemo,had a normal ca-125 and a clear ct scan I had a second look/colostomy reversal..and was found to still have visable disease volume left..so I started on another type of chemo for 6 cycles. As Saundra stated lots of us have to treat this disease as chronic (like me) and will be on chemo forever. It goes away for a little bit and then it shows it's ugly head and we attack again with another chemo...this can go on for quite awhile.. I wish you and yuur sister the best and look forward to hearing more from you both~~~Joanne
  • kris43
    kris43 Member Posts: 275
    #7
    question
    Hi and welcome. I'm presuming because your sister did the 18 rounds that she did IV/IP chemo - is that right? And do they want to take out her abdominal port? I had infection in my abdominal port over and over and could only do a couple of rounds in that area because of it. That port will not be used again any way - IP chemo, as it was explained to me, is a one time only kind of thing as it is brutal on the system. Now if they were talking about taking both ports out - I have one in my chest also - I would be questioning that. I am supposed to have mine in for 2 years because if you have a recurrence if normally happens within the 1st two years after diagnosis.

    As the ladies will tell you there are many reasons the numbers spike - but normally they watch you closer and maybe it'll go down next month. Are there any other symptoms she is having?

    Hang in there, ask lots of questions and please let us know how she is doing. Sending good thoughts your way.
    Kris
  • ggggsister
    ggggsister Member Posts: 38
    #8
    kris43 said:

    question
    Hi and welcome. I'm presuming because your sister did the 18 rounds that she did IV/IP chemo - is that right? And do they want to take out her abdominal port? I had infection in my abdominal port over and over and could only do a couple of rounds in that area because of it. That port will not be used again any way - IP chemo, as it was explained to me, is a one time only kind of thing as it is brutal on the system. Now if they were talking about taking both ports out - I have one in my chest also - I would be questioning that. I am supposed to have mine in for 2 years because if you have a recurrence if normally happens within the 1st two years after diagnosis.

    As the ladies will tell you there are many reasons the numbers spike - but normally they watch you closer and maybe it'll go down next month. Are there any other symptoms she is having?

    Hang in there, ask lots of questions and please let us know how she is doing. Sending good thoughts your way.
    Kris

    you ladies are fantastic!
    Thank you all for your replies. I'll pass along your information to my sister. It is encouraging. I think it's awful that anyone has to be on this path. It seems to me there should be something that can be done earlier in the "game". My husband, kids, and I did the Sacramento Natl. Ovarian Cancer Coalition walk/run last weekend. It was the first one in our area. Lots of people. But there weren't any booths or doctors available to talk or hand out information. Our "goodie" bags had a brochure about the silent disease and its symptoms, and along the walking path there were several signs telling what the symptoms are. Unfortunately, as you all know, those symptoms could mean anything! Have any of your doctors talked about their thoughts as to how to diagnose this earlier? Do health insurance companies need to broaden their coverage so that doctors can perform CA-125 tests and scans once a year? Since I myself am not fighting the disease, I have energy to pursue this. I'd be interested in your thoughts.

    Gail
  • saundra
    saundra Member Posts: 1,370 Member
    #9
    cA 125
    So far the medial establishment do not consider this blood test as a diagnostic tool like the PAP smear.
    My daughter, and I hope my grand daughters will have one each year and pays for it herself in conjunction with her female OB/GYN. It is cheap, under $50. Most doctors will not order it here in TX. There does not seem to be any early test now. Saundra
  • ggggsister
    ggggsister Member Posts: 38
    #10
    kris43 said:

    question
    Hi and welcome. I'm presuming because your sister did the 18 rounds that she did IV/IP chemo - is that right? And do they want to take out her abdominal port? I had infection in my abdominal port over and over and could only do a couple of rounds in that area because of it. That port will not be used again any way - IP chemo, as it was explained to me, is a one time only kind of thing as it is brutal on the system. Now if they were talking about taking both ports out - I have one in my chest also - I would be questioning that. I am supposed to have mine in for 2 years because if you have a recurrence if normally happens within the 1st two years after diagnosis.

    As the ladies will tell you there are many reasons the numbers spike - but normally they watch you closer and maybe it'll go down next month. Are there any other symptoms she is having?

    Hang in there, ask lots of questions and please let us know how she is doing. Sending good thoughts your way.
    Kris

    abdominal port
    Hi Kris, My sister did have two kinds of chemo. It's the abdominal port that her dr. wants to take out. She never did have one in her chest. I thought that the plan had been to keep that port for a while, but with her CA-125 spike, they want it out now. I don't believe she's having any other symptoms, other than nausea and headache, which she believes is due to the residual effects of the chemo.

    Thanks for your good thoughts.

    How did you learn about your cancer? Did you have the typical symptoms...for very long? How long since your last treatment?

    Wishing you well.
    Gail
  • TracieK
    TracieK Member Posts: 45
    #11
    ggggsister said:

    abdominal port
    Hi Kris, My sister did have two kinds of chemo. It's the abdominal port that her dr. wants to take out. She never did have one in her chest. I thought that the plan had been to keep that port for a while, but with her CA-125 spike, they want it out now. I don't believe she's having any other symptoms, other than nausea and headache, which she believes is due to the residual effects of the chemo.

    Thanks for your good thoughts.

    How did you learn about your cancer? Did you have the typical symptoms...for very long? How long since your last treatment?

    Wishing you well.
    Gail

    ggggsister
    I too did inraperitoneal chemo.I finished in June.It is quite an accomplishment to get through all the treatments. Tell your sis congrats! The doctors want that abdominal port out ASAP. It can lead to scar tissue and bowel obstructions and infection. The longer it is in the greater the risk. I felt so much better once mine was out. My ca125 has decreased since the port removal also. Praying for you and your family. God bless.

    Tracie
    Oh yeah, I lived in Roseville from 1996 to 2002. Just thought ya might be interested.
  • ggggsister
    ggggsister Member Posts: 38
    #12
    TracieK said:

    ggggsister
    I too did inraperitoneal chemo.I finished in June.It is quite an accomplishment to get through all the treatments. Tell your sis congrats! The doctors want that abdominal port out ASAP. It can lead to scar tissue and bowel obstructions and infection. The longer it is in the greater the risk. I felt so much better once mine was out. My ca125 has decreased since the port removal also. Praying for you and your family. God bless.

    Tracie
    Oh yeah, I lived in Roseville from 1996 to 2002. Just thought ya might be interested.

    Tracie
    Hi Tracie, Thanks! for your info about the port. I'll let my sister know; she's finding everyone's insight pretty helpful when I email her. If she can take her ostrich head out of the sand long enough, I think she'd really like being part of this group. But that's the way she deals with things; apparently it's working for her. :-)

    So where do you live now, Tracie? Roseville is a major city now. Do you have any family left there?

    Congratulations to you, too, on finishing your chemo. I hope that you're feeling well.

    Stay strong.
    Gail
  • kris43
    kris43 Member Posts: 275
    #13
    ggggsister said:

    abdominal port
    Hi Kris, My sister did have two kinds of chemo. It's the abdominal port that her dr. wants to take out. She never did have one in her chest. I thought that the plan had been to keep that port for a while, but with her CA-125 spike, they want it out now. I don't believe she's having any other symptoms, other than nausea and headache, which she believes is due to the residual effects of the chemo.

    Thanks for your good thoughts.

    How did you learn about your cancer? Did you have the typical symptoms...for very long? How long since your last treatment?

    Wishing you well.
    Gail

    hi
    I see that Tracie said her doctor wanted that port out as soon as possible also - that would have been my protocol also had it not been so infected all the time. As I said I think it cannot be used again as IP chemo is a first line chemo treatment - so there is no reason for it to be there. It's a simple procedure - they open you up, take it out and sew it back up. I felt so much better when mine was out and the infection could clear up. It gave me fits from the day it was put in.

    I was diagnosed July 18th 2007, stage IIIC. My only symptom was severe pain in my right side. Apparently my tumor was cutting off blood flow and that in turn caused the pain. My pants had been a little tighter - but I had previously lost a large amount of weight and hadn't been eating as well as I had been - so to me that didn't mean anything. You eat & your pants get tight, right? lol

    My CA 125 at the beginning was 1660 and right now I'm running around 9.7 - my low was 6.9.

    Your sisters other symptoms could totally be releated to chemo and the side effects - IP chemo is brutal on the system. I only made it through 2 so those that get through the whole program are my hero's. I've been done since December 29th - so I'm 9 months out of treatment.

    Keep posting and I'll keep you and your sister close in my thoughts.

    Kris
  • Unknown
    Unknown
    #14
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