1st Re-occurance of Ovarian

Hi Everyone,

I am Laurie and was diagnosed stage 2 ovarian in jan 2014. Was treated with taxol/carboplatin and 2 yrs later i had a reoccurance. Currently on 3rd round of Avastin. Im so tired, does anyone know if this symptom will pass or is it ongoing? My onc wants to add chemo to the regime, im just so undecided what to do. Im so happy to have found this group 😀😀😀❤

37 Replies

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  • Hi .Laurie,

    This is a great group so welcome xx I've just been diagnosed with a recurrence just under 6 months after first line and am awaiting my treatment plan so I'm not able to answer your question however I am sure you will have replies soon.

    You can also use the Search My OvaCome box at the top to free search just in case this has been asked before or a similar question. Ie Avastin

    Did your Onc say why he wanted to add chemo? Avastin does have side effects and users need to be informed of what they are and how chemo will/may help and sometimes our Oncologists forget to explain!

    Hopefully you'll have some informed responses soon,

    Take care

    Clare xx

  • Hi Clare. Nice to meet you. I guess i was lucky enough to have 2 years before the reoccurance, my onc just said i need chemo because the ca 125 has risen since i had a surgery in august. We tried arimidex first with no result. The Avastin worked the 1st time lowering my ca 125 from 127 to 76 then 2nd one went back up to 105 im on the 3rd. They dont really explain much. Thank you and good luck with your plan😀

  • Hi

    I recurred in 2015 after 3 years thinking it had gone away. Stage 1C. It's a shock I did the chemo route even though am no fan and levels now on the up again. I'd be very unlikely to take the chemo route again.

    How do you find your current treatment?

    Welcome to the party

    LA

  • Im sorry. Yes its very much of a shock im with u on that. I was stage 2. Carbo/taxol was rough the first time around and have permanet chemo induced periperal nueropathy, damaged vestibular nerve so im always dizzy and terrible pelvic pain on and off. The avastin side effects extreme fatigue, headaches, joint pain but not like from mainstream chemo. So its not so bad if it works. So far my numbers up and down. Fear of the unknown just not fun.

    Hugs and healing energy to you.

    Laurie

  • Hi Lauriemarie, I am so sorry to hear about your reoccurance. Mine came back about 6 months after finishing chemo. Its the worst feeling ever you feel so lost. I was given 4 more chemos & it's gone dormant for now. As for starting chemo again you will need to really talk to your onc because only you can make that choice. I wish you the best take care Cindyxx

  • Hi Cindy, so glad to hear its dormant, its such a mental thing. Would you mind sharing the type of chemo you had?

    All the best to you as well

    Laurie 🙏❤

  • Hi Laurie, I was on Carbo/Taxol 6 sessions, Avatin 18 sessions, then Carbbo / Gem 4 sessions. It's been worth it but does damage your body & mind.

    I am somewhat confused to how some ladies can receive Avatin & some can't. I was told if my grade was lower I would not of been offered it I am 3c. I think all woman what ever grade should be offered it. I am very please they have offered it to you. Good luck it does help. Take care Cindyxx

  • Hello Laurie Marie!

    So sorry to hear about your reoccurance! I went from first line of carbo:taxol right into secondline of Avastin/Doxil because I was platinum resistant. I've had 4 rounds of Avastin and I can't say I've felt tired from it. Perhaps it's because just having been on carbo/taxol this is a walk in the park. ;) The biggest thing I notice is joint pain. Particularly in the hands, feet and hips.

    Praying for another remission for you!

    Jodi

  • Hi Jodi,

    Thank you for the response. You sound so strong! Is Doxil anything like carbo? I believe thats what they want me to try. I hope we can all have a remission party soon. Sending healing energy your way.

    Laurie

  • Hi! No, Doxil is nothing like taxol (thankfully). It carries its own special side effects. The possibilities being: mouth sores, blisters on hands and feet and headaches. I will have round 3 (of 6) on Tuesday and have not experienced any of them. Knocking on wood I can get through all the rounds and continue to escape them!! My onc nurse said it is quite possible! :)

    I am very diligent the first 5 days after treatment to not get overheated or do anything that causes friction on my skin, wear tight fitting clothing or shoes, drink hot liquids, eat spicy foods, take hot showers or do the dishes (hubby takes over - BONUS!). I also keep my hands and feet super hydrated.

    Please feel free to ask any other questions as they come up. I love this site!

    Hugs!

    Jodi

  • That sounds so encouraging! And the hubby does the dishes haha love it... that is a nice side effect. I have never been on a site like this before and im so glad i found it. I dont feel so lonely now . Thanks for sharing it really helps. Especially with the lonliness of this darn thing.

  • Hi Laurie. Sorry to hear yours has returned. It doesn't seem to observe the "Not welcome here" signs we all put out, does it? I've been in my 2nd remission now for 19 months and I've been on 3-weekly avastin all that time. I get very little in the way of side effects. I occasionally feel a bit tired for the rest of the day following the infusion, which may be only because I got up early to go to the hospital ! No other tiredness. Apart from a runny nose & slightly raised blood pressure, I have no other side-effects. It's been a wonder-drug for me. I do have a friend from my Support group who ceased the avastin due to headaches and I've read on this site how avastin has caused foot aches.

    I haven't heard of anyone before going straight onto avastin when OC recurs (that's not to say it doesn't happen, of course). Usually, when the CA125 begins to rise, you have all the rounds of chemo plus avastin, and then avastin only continues after for maintenance. If you've had a 2 year remission, I don't think there should be a problem for you to be back on chemo now, as long as you didn't have major problems with it the first time.

    My understanding is that avastin works by narrowing the blood vessels that would feed blood to the tumour/s, thereby restricting any growth, but I thought you needed the chemo to kill off any growths before avastin is employed to keep it that way.

    Personally, I'd say that you do need the chemo, but of course I'm no doctor. Good luck - I hope it is soon resolved for you. Pauline

  • Laurie, why Avastin if it's indeed a recurrence? It's at best a maintenance therapy . Personally , I'm yet to be convinced on the efficacy of Avastin.

    Naimish

  • It's also only suitable for certain people and has side effects too which people need to be informed of.

    Hope you and your wife are doing well

    Clare

  • So far so good Clare and thank you for the concern. Peripheral Neuropathy is also as good as not there. Energy levels at new normal highs. Just the Damocles sword remains. Very unhappy to know of your recurrence . Wish you all the best and Keep the Faith.

    Naimish

  • I was very afraid to do chemo because i had a very hard time with severe permanant nueropathy so first he tried arimidex which did nothing. Then Avastin which worked the first time dropping my ca125 from 127 to 76. I finished round 4 monday but now ca125 at 147 so i guess i have to do the chemo again starting March 1st .

    Thank you do much

    Laurie

  • I'm on Avastin having had 6 cycles of carbo/taxol. I had the third dose of avastin on its own last Tuesday. I think the tiredness is getting better. My main problem is pain in my joints!

  • Hi,

    I was diagnosed with PPC 3C (a variation of OC which affects the peritoneal cavity) in August last year. I'm having three weekly Avastin after six rounds of Carbo/taxol with surgery in the middle. Chemo was quite challenging - I had extremely uncomfortable feet, sore joints, constipation and diahorrhea (!) and general loss of a sense of humour for a week. I'm still getting uncomfortable feet on Avastin and yes, I do feel more tired than I think I should be. I do feel though, that I have got my life back a bit - a very short time in the hospital for the actual infusion and nearly a week saved from side effects! Because I feel so much better, I went back to horse riding for the first time since my surgery, really enjoyed it, but have been incredibly stiff ever since! I'm trying Pilates next week - I need all the strength I can get for my skiing holiday in March!

    I love the tattoo someone posted recently - Carpe Deum - seize the day. Everyone on this site is so positive and such a great support - how can we not beat this monster, even if we just thumb our noses at it and do as much as we can each day for ourselves. One day I'll post my double decker bus theory...

    Love to all, Ali x

  • Now Ali, you can't leave us hanging.....double decker bus theory?!!.......

  • Ok - double decker bus theory:-

    I live in Birmingham which can be a dangerous place to be when a pedestrian. I've always had a feeling that a double decker bus was waiting to get me in a moment of geriatric distraction. After my diagnosis, I wondered whether having chemo or having a scan or an appointment has actually prevented said bus (it's a Number 50) from getting me and therefore having cancer has actually extended my life.

    I hope this doesn't sound flippant - it's the way I deal with this monster.

    My point is - nobody knows what is coming, you only have to watch 24 Hours in A&E to know that, so I am determined to make the most of this life and, who knows, the bus still might get me before the cancer.

    I love your posts Clare hope all goes well for you.

    Stay well all,

    Ali X

  • Love your theory and that's the sort of thinking I have too !!

    Xxx😄👊

  • Me too Ali. I feel just the same way!

    Juliax

  • Hi Laurie, I was diagnosed in April 2012 and recurred April 2015, currently waiting for results from scans as digestion playing up! I had Carbo/Paclitaxel both times but delivered differently. I had 3 weekly first line which was awful then 2nd line weekly Taxol which my Oncologist says works in the same way as Avastin. I sailed through that compared to first line, able to do so much more, we all react differently and I had my doses played with for neuropathy but generally recovered very quickly. Good Luck, I remember the shock when I was told it was back, will find out tomorrow if mine has again, but I somehow feel I will cope with it better if it has, we shall see, the ladies on this site keep me sane! Xxxxx

  • Hi Steghart,

    Thanks for sharing, i have finally decided to do cisplatin/gemzar/avastin. Hopefully, it wont be like the 1st time around like you. How did your Dr. Appt go? Sry for the late response just figuring out this site. It is great all these beautiful women share. It is really an awful thing to bear alone.

    Laurie

    😻

  • Hi Laurie,

    Well I shall be joining you on Cisplatin and she's giving me Caelyx alongside. Both new to me so we shall see what reactions are! I am once every 4 weeks, not sure if that is better or worse?!

    Good Luck and keep me posted, we are all here for each other,

    Claire xxx

  • Hi Claire,

    Good luck to you as well, starting March 1st every 3 weeks with gemzar iinbetween. When do you begin.

    Best of luck.,

    Laurie

  • Thanks Laurie,

    I haven't been given a date yet but I think it will be next week! My Oncologist is very dynamic and that is what happened before!

    We will get through it.

    All the best,

    Claire xxx

  • Hi Claire

    I was thinking about you and thought i would check in an see how you are feeling with the cisplatin? Hoping your getting through it.

    Have a beautiful day

    Laurie

  • Hi Laurie

    I have just finished 18 lots of Avastin and yes I am pretty tired most of the time but still able to go to work. Thankfully my job is pretty sedentary as I find it difficult to make any exertion, trying to walk when it's windy is challenging! General joint pain in knees and feet but nothing that paracetamol doesn't deal with. I used to be the worlds worst shoe buyer but now I have invested in good memory foam styles otherwise walking was impossible. I do have fizzy feet ( neuropathy) but that may be left over from the carbo/taxol I suppose. I am hoping that energy levels will improve now that's all finished but until I have end of treatment scan next week I'm not counting any chickens!

    Wishing you all the best and be strong!

    Jane xx

  • Brilliant description "fizzy feet" - that really sums it up!!

  • Thanks for your response. Guess tired is a part of it, i was fearful it was due to something else but onset with Avastin. Fizzy feet my goodness thats to funny, luv that. Praying your scan comes out clear !

  • Hi Laurie

    I've been on avastin since last May, at first with weekly taxol for 15 weeks and now with a chemo tablet called cyclophosphamide. I am platinum resistant so can't have carboplatin but if your recurrence was 2 years down the line are you not still considered able to have that again? I only ask because it is still considered the 'gold standard' chemo for OC. That said, it is a very tiring drug. I have the aches and pains and a bit of sinus issues with avastin, feel tired too but not as bad as on intravenous chemo. I'd suggest you ask your oncologist to explain what the options are and likely benefits/side effects of each. Everyone's different and your medical team should be able to help you get the right combination.

    Love the double decker bus theory!

    Madeline. Xx

  • Thanks Madeline yes they are suggesting. Carbo or doxil. I see them today and will ask thanks for the suggestions, they really dont explain much and im not the best at asking questions. Bus theorys great. Trying to avoid any further nueropathy and just not sure if caro or taxol did that

    Laurie🙏😀

  • Why did u keep your ovaries..if you had a red flag ..i had stage 4 silent killer cancer. Why not a hysterectomy?

  • I hope and pray they get rid of it..every microscopic cancer cell...FUCK CANCER..

  • I had a radical hisorectomy jan 2014. Saw them yesterday now suggesting cisplatin and gemzar. I have very bad nueropathy and so sensitive to drugs. Constant pelvic pain and yes im so upset because they gave me 95 percent cure 1st time so i was shocked as hell that it came back. Fuck cancer is right. Im just a mess and so scared of the pain. So sorry im rambling on. I dont know how to deal with this. How are you feeling?

    Laurie

  • My reoccurrence was in 10 months. Went back into chemo 18 topoteecan and avastin and my ca is on the rise. Starting Bracburcar (so?) in week . Pills but you have to have Brca 1 gene.

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