Day after diagnosis...: It's now three... - SHARE Ovarian Can...

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Day after diagnosis...

Claire65
Claire65
β€’16 Replies

It's now three weeks since my TAH and I went back for my follow up appointment yesterday to be told I have stage 1c OC. I didn't realise the shock I'd feel at being told I had cancer as all my scans in the build up to the TAH and the blood tests were normal. This gave me hope that it was just an innocent cysts and the reality of the diagnosis has hit me hard. I've been told that chemotherapy is required to sap any stray cells that may have escaped and I'm scared about it. I just have no idea what to expect.

I'm just just looking for some advice on how to cope with the diagnosis and chemo. Although I've not had my appointment with the Oncologist yet I have been told that I may have two options for chemo. The first being Carboplatin on its own or second option is Carboplatin and Paclitaxel together.

Does anyone have any experience with these drugs? Any advice would be really appreciated at this time. Thank you in advance

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Jenniferinghram

Newly diagnosed myself... starting chemo in december. ..my mind went to jello when he told me I had stage 1. But thankfully caught early.. let's stay posted...

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Claire65

Thank you for your reply. I will be starting chemo in December as well so looks like we will be going through treatment together. I am very apprehensive about having chemo.... I think it is the fear of the unknown. Would like to stay in touch.

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Jenniferinghram

Yes indeed. I'm jennifer I'm from ohio

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yogafreak

I am newly diagnosed as well. I don't know the stage yet. This forum is wonderful.

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Claire65
Claire65
in reply to yogafreak

It's such a frightening time and I think one of the biggest things for me is the fear of the chemo but this forum is already helping lift my spirits. It's a comfort to know this is here.

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deb1113

I had dose dense chemo for 18 straight weeks from August through December of 2013. First week Taxol and Carbo, second and third weeks just Carbo, then repeat the cycle. I missed 3 just Taxol weeks because of low blood counts and had to have two blood transfusions. But, except for a day and a half of fatigue each week, I pretty much sailed through with no issues. I have been NED ever since. I was Stage 2B, Grade 1, endometroid. Good luck to you.

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Claire65
Claire65
in reply to deb1113

Thank you for that,it is very positive and encouraging that you had so few side effects. Wishing you all the best on your road to recovery.

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KellyLein

Hi girls.. I remember the day I was dx (April 27, 2016 Stage 3c My CA 125 was 780) My mind went to jello too! I can tell you from my recent experience that YOU CAN DO THIS!

I did 18 weeks of chemo. First week of every month: Carboplatin/Taxol next 2 weeks: just Toxol then a week off. I also took a steroid and nausea meds 2 days after every chemo. I felt GREAT the two days after chemo. I started to feel tired and "noodle arms and legs" on days 3 and 4. This is not to say that your body may need more rest! I have a dear friend that needed much more rest- we are all different. She is doing fantastic now.

My hair started to fall out after the 3rd week. I choose to shave it off and have lunch with my friends....

I also took B12 and Bcomplex vitamins every day during my treatments. I think it helped keep my energy up.

I will say for those that my be a higher stage and need 3mos+ chemo: GET A PORT. I had a port put in and even though it can only be accessed by a qualified nurse-- it saved my veins. You cannot see it and it hasn't bothered me in the least.

Don't be afraid to talk to your drs about something to help with anxiety. I had never taken anything and I was VERY apprehensive about taking anything. Those first months were very tough. They gave me adivan. I took a half every time I began to shake (from anxiety) or if I felt panic. It did not send me to bed. It just took the awful fear away.

Finally.. on a personal note... I talked to God A LOT during this experience. My prayer was that he would direct my path and put me in the best care and treatments possible. If his plan was not for me to get better-- than I prayed for peace and grace.

I am now doing great. CA 125 is 14 and I my last scan showed No evidence of disease (NED)!! I am considering doing a year of maintenance chemo every 21 days.

If you have any questions.. feel free to contact me.

kellyclein@gmail.com

4 likes
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Claire65
Claire65
in reply to KellyLein

Thank you so much for such a positive reply. I know I will get through this with the love and support of family and friends.

I to have a great faith and believe God never gives us more than we can handle. The power of prayer is a great comfort and by going through bad times we appreciate the good times even more and count our blessings. Wishing you well with your continued treatment

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Shellygirl
Shellygirl
in reply to Claire65

Chemo is not as bad as expected it is fear if the unknown once you have one under your belt you will be fine... I had a few side affects the worse if which was random joint pains which I would describe as someone sticking pins in a voodoo doll as they were very random and became worse at night pain killers helped .. but best advice I could give is not to suffer in silence ... constipation and nausea can be a problem so do speak to your onc and cns as there are tablets they can prescribe that will help ... listen to your body if your tired rest ... drink plenty and try to keep active plan nice social things to do when your well to give you something to look forward to... I found chemo to be cumulative to so the fith and six cycle was the worst .... losing your hair can be a major shock but the wigs are great you get one for free on nhs ... I never thought I would be brave enough to go out without a wig but I have I don't mind... I pencil in my eyebrows and wear eyeliner to compensate for lack of eyelashes... do go to look good feel good day if there is one near you the freebies are really good and make up tips help as having no hair etc it changes I laughed at myself when I realised I did not know where to stop my foundation as I had no hair line... most of all stay positive ... smile and make memories πŸ˜ƒπŸ€—

3 likes
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Teds456
Teds456
in reply to KellyLein

I know this is a very old post, but I just wanted you to know how your words quieted my soul. Thank you and I pray you are doing well right now!!

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Claire65

Thank you so much for your feedback which is great as you feel so isolated and alone when first diagnosed. I will not suffer in silence and will take advantage of all the help there is now available. I have now started a journal of my thoughts and feelings every day. I think we all forget the good days when we have a bad day. This will help me to remember the fun things to do as well.

Best wishes

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allikat65

My advice is to get informed. I did the research for Mother because the doctors just pumped her up with chemo to the point she had no quality of life and the cancer returned anyway. Maybe I could have taken her on a wonderful memory trip somewhere beautiful instead.

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Claire65

Thank you for that and I am getting as much information as I can so that I can ask the relevant questions when I have my meeting with the oncologist.

I wish your mother well.

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DSK-C
DSK-CSHARE Volunteer

The fear of the unknown is natural. You are lucky in the sense that you were diagnosed at an early stage. I was diagnosed four years ago with hi grade serous fallopian tube cancer. I had six cycles of IV/IP taxol and cisplatin (related drugs to what you mentioned). During chemo you will be given steroids and anti-nausea meds. Also asked for an anti-anxiety drug, ativan, which I would take the nights before chemo so I could sleep better and be strong for the chemo. I kept active when I could and except for the first few days following chemo, I would walk every day 30-40 minutes. I also meditated and did deep breathing. I went for acupuncture and massages before and after each chemo cycle at my hospital' s integrative medicine center. It all helped! Good luck!

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Claire65

Thank you so much for such an informative message. I am seeing the oncologist in two days time and hope to start treatment in the next week or so. It will be 4 weeks Wednesday since my surgery so imagine that will be sufficient time. I am sure I will feel more confident once I have found out more about my specific diagnosis and treatment plan. Thank you for the tip about the anti anxiety drug.

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