Clear cell OC ??

Hi. I am new to this site. I have stage 1C clear cell ovarian cancer and I would love to hear from other people with stage 1C and also from anyone with clear cell no matter what stage. It would be interesting to hear how you are getting on with your treatment and how you are coping with everything. Also, what sort of symptoms do you look out for post treatment? I find that I feel the slightest twinge and wonder if it might be serious, ie: a possible sign of recurrence. Thanks.

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  • I have clear cell 1c and have just completed cycle 4. Two more to go... I have had a few twinges but onc not concerned. Have you had your op?? I opted to not have cold cap as I was told I would lose my hair which I know have. It went very thin so I used my husbands clippers to get rid of rest. I did not feel chemo was bad as expected but there are side affects. Everyone is different tho so which side affects you get maybe different to the ones I have experienced. If that makes sense. Best wishes for your journey. This site is amazing full of lovely ladies who offer support inspiration and all manner of help ... Big hugs xx

  • Ps I didn't have the cold cap, my 25 year old son shaved my head and my hair has grown back better than I've ever had. I have it in a short pixie cut with lots of gel,would never have done that before xx

  • Sounds fab... Hope my hair does the same xx

  • Hi,

    I had 1c,had the op and 6 months of carbo/taxol, finished March 2015.

    I have had a gyno examination and bloods every 3/now 4 months and a routine scan to be done in October,but I have had an insurance that has paid for private healthcare.

    Having said that, I have heard of the other ladies monitoring and it has been the same as me.

    My worst symptoms post chemo have been lack of strength and stamina,I have a cat nap if I need to and went on a fitness workshop that said we can lose up to50% of muscle down to chemo and cancer,so, I try to build my strength up, but it is hard and could be down to age anyway.

    I always worry about re occurance and tonight had a bit of a melt down,but,I am so far ok,we all worry about every twinge,but need to put our faith in our team and get on with life,otherwise,where would we be? Worrying all the time we are well about the times we aren't.

    I think i am very hard to live with and I don't want to sound down, you have probably caught me on a bad night, because I am glad to be alive, look after my lovely grandson and go on fab holidays,have done up 3 houses in the time and go out with my supportive friends on a regular basis.I am very active in so far as I run,walk,swim ect and my daughter got married in Turkey in June and it was amazing.

    I am lucky to have good family and friends as I hope you have, sorry to ramble on, I was going to post tonight but you got my feelings! this site is amazing and any time you need to talk we are here,or you can pm if you want to, I'm not always this needy lol!!

    Wish you all the best,

    Carole xxx

  • Carole loved your post it gives me hope so not dismal at all 😃😃💪🏻💪🏻

  • Thanks Shellygirl,

    It isn't dismal and life goes on,do get a bit sad and shocked at what has happened,tonight was because I miss my mum who passed away some years ago and is just one less person to talk to and I'm sorry that you got that!

    Life is precious and good and goes on as before,when you feel better, but we are always here,

    All the best,

    Carole xxx

  • Don't be sorry ... I lost my dad to lung cancer... 16 years now but I still miss him... I talk to him in my head out loud sometimes ... We have down days and it's good to get it out I think ... It's so positive to be able to talk to ladies like yourself ... I too think I'm hard to live with but I've been married for thirty years so hubby doesn't think so I guess or he would have left long before OC raised its head. Thank you so much for your uplifting post it made me realise I can get my life back and begin to walk then run again 😃😃

  • I miss Mum too. Xxx

  • Mums are special xxx

  • Thanks Shellygirl,

    You too have uplifted me tonight,that's what we all do, isn't it?

    I took myself off from my hubby of 40 years! tonight because I felt I was a bit difficult to deal with,he has his own health problems,life is good and precious,we need to use this site to relieve those around us who get it full blast most of the time.

    Thank you for listening,just goes to show there is someone always here

    Carole xxx

  • Hi, I was diagnosed with clear cell 1C in March after my TAHBSO and surprise appendectomy, my mass had ruptured sometime before surgery, ruptured again on removal and cancer cells found in abdominal washings

    . I started Carbo/Taxol in early April and finished 29th July. I had my end of treatment scan yesterday (26th Aug2016).

    My profile gives all details of my experiences todate. I would type more but my mum died very very unexpectedly just over two weeks ago and I'm still feeling down and not able to post much at the moment.

    You can follow people on this site so suggest we follow each other for updates?

    Take care

    Clare xx

  • Hi Claire

    Hope you're having a sunny long weekend. It's a long slow progress after you lose a parent. Good to hear from you today

    Caroline x

  • Hi Clare, Yes that would be great especially when we are both 1C. I live in Scotland so it will be interesting to see how treatment compares.Thanks for taking time to reply. You must be in a very sad place just now and losing someone close when you are dealing with cancer must be incredibly hard. Hope your next appointment is a positive one. Take care. A-T13 xxx

  • Hope you are OK Clare! I have thought about you in the last couple of weeks! It's hard losing a parent so I hope you are OK.

    Dx

  • So sorry Clare to hear about your Mum,know how you are feeling,not a good time,but there never is,just want to wish you the best and take your time to grieve,your Mum would want you to focus on yourself and make sure you get better and move forward,

    Lots of love and thanks for your good wishes last night

    Carole xxx

  • Hi I too was diagnosed as 1c clear cell OC. I had 6 rounds of taxol and carboplatin. My last round was jan13,2016. I'm doing pretty good. I still have tired days from time to time. On those days I try to get more rest. I do blood tests every other month and I just recently had a ct scan. Praise God all was clear. I do an exercise class once a week. Got to work on my endurance.

    I just try to stay positive. I've been blessed with a really supportive family, friends and boyfriend. I lost all my hair but it's growing and I'm getting used to my short hair do. Hope this helps

    Hugs

    Larena

  • I was diagnosed with 1C clear cell with some serous low grade in 2012. The clear cell element recurred in 2015. There are some great threads about clear cell on Inspire full of positivity and advice

    LA

  • Hi Lily-Anne, That is good to know. Positive stories are such a support. How are you doing ? Are you still in treatment?A-T13 xxx

  • Not sure yet. I finished chemo in March but CA12 level is rising am really disappointed as four years ago I was thinking lucky escape. I'm doing okay have a hernia but work full time, off to see bowel surgeon about the pain and hernia. Positivity rules for sure, you cannot change the future but you can enjoy it.

    LA xx

  • Hi angel, I have clear cell stage 3a, diagnosed in 2009 and had 2 recurrences, both treated with ops. I'm checked ( ct and bloods) every 3 months, but otherwise I carry on, working full time and booking holidays each time I get the all clear ( lost several booking before results 😕)

    Anything I can help with, let me know

    Hugs

    Sue

  • Hi I'm 3b, just completing first line, how soon was your 1St recurrences xx

  • Hi lupilinz my first reoccurrence was after 2 years, and the second was 2 years after that.. the oncologist was impressed that it seems to reoccur virtually to the month😁

  • Thanks for that, this is the bit I'm finding the hardest especially with family as they don't seem to grasp as I was told it's aggressive x hopefully I will get a bit of grace and new normal back for a while xx

  • Hi Ladygooner, I am very interested to hear about your recurrences and that tou got ops for them. That is very hopeful for all of us. Surgery is a great way to get rid if a lot of disease and it is good that you were able to get it and not just initially. I liked your positivity and your comment about booking hols once you get the all clear. I've had to cancel hols too in the past and this week had to cancel a cruise , not for me but because my husband had to have emergency eye surgery for glaucoma . It came right out of the blue! Still he is doing well and we will plan one in 2017. However , I think that we won't book far ahead in future, but will watch and wait (healthwise) and book nearer the time when we know all is well.

    Thank you so much for your offer of help and advice. Knowing that you are doing well with clear cell despite recurrences is great to know and gives me such comfort. A-T13 xxx

  • Hi, I'm 3c clearcell, had a big radical hysterectomy in April 16, had to have a bit of bladder work but all working fine now, my mass was size of a 30 wk baby on removal as I'd complication of fluid in lung but it wasn't cancerous cells so drained then op x I was allergic to Taxol, but iv had 6. Carboplatin & Gem which finishes on this Wednesday xx uv had a ct scan and c125 test done and get results 12th September x I didn't lose my hair but it was cut short xx to be fair, I get tired, my eyes go a little out of focus and I get constipated and my mouth got a bit sore xx i also worry about it coming back especially at night but I get up put the lights on and watch anything in TV as I find it helps xx good luck with all your treatment, this is a fab site for all info, we seem to watch each others back's xxx

  • Hi Lupilindz, Good luck for 12th Sept. I 'm sure it will be good. I know exactly what you mean about the middle of the night. I am the same -on some nights sleep evades me and i have to read or go on the computer. As you say anything to blank out those dark middle of the night thoughts. The thought that it might recur is so difficult to deal with. All these amazing ladies who are coping with recurrence are a marvellous role model. If they can do it then hopefully so will we .Be good to yourself and take the time you need to recover. A-T13 xxxx

  • I'm so doing the lights and tv on in the middle of the night! Sometimes wake up in a panic or in a hot sweat, sleep with the fan on,goodness how sad, good luck for the 12th

    Carole xxx

  • Yes. I get hot too. Feel like a dog in a basket going round n round looking for a cold spot xx I don't panic any more as iv learnt how to breathe through it as I spent half my life having panic attacks.

  • A friend told me today about cool pillows,I am going to look into it,anything to help!

    Carole xxx

  • I had stage 3 colon cancer and ovarian cancer 12 1/2 years ago. I am still monitored by doctors to this day. I have never had a recurrence and am ever grateful for that.

    My last colonoscopy was a few years ago and I will be due for my next one soon. On my last

    visit to my colonoscopy doctor I was told that all my doctors "had bought me more time."

    I couldn't believe that a doctor would make such a comment. I am well aware of the fact that surgery and a year of chemo saved me but to have a doctor remind me of this actually made me angry. I don't think a doctor needs to remind a patient of this fact. We are already aware of this.. Comments like that fills your head with a feeling of hopeless doom and gloom. But I am a stubborn woman and that comment made me more determined to stay well. I plan to outlive that doctor. (and he is a good 20 years younger than me.) I'm Still fighting the devil and determined to win . Positive thoughts can keep you going and negative thoughts can bring you down. Stay positive. Prayers to you

  • I was diagnosed with stage 3 phase 3 clear cell in may 2006. My op was 2 weeks later followed by check. I had to go the five years of consultant checks but am still here 10 years later. My hair was mousey brown but grew back white! I know it's trivial but at the time no amount of peeps saying how trendy I looked cud convince me,lol. Like the lady previous in hindsight I had have opted to have my head shaved before it fell out. Hope this helps..

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