Need positivity back

Hi I wrote earlier about my appt today, I'm stage 4 with liver lesions which they say can't be operated non because too near arteries (or blood vessels) can't remember which cos I think my brain shut down!! I'm on carboplanton/taxol second round of this chemo next week and they will add I. Avastin when my abdo wound has fully healed. Are any other ladies here in this situation and I am wondering what might happen when my chemo has finished what happens then??? I tend to keep things together but today I have been quite emotional and it has upset my hubby and family. Need some reassurance please. Thank you lady warriors xx

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  • Hi Joanie. Im not sure anyone can tell you that , it depends on how the chemo works. You will prob have a scan and they may offer you a trial or keep you on Avastin for a while if you are benefitting from it. Maybe you could speak to your oncologist to see what they have in mind. I hope your chemo goes well and you get a good result. Sending you a big hug. Hope you are feeling brighter. Kathy xx

  • Thank you katmal, I know its difficult to predict what might happen, I need a kick up thebum and get my fighting knickers pulled right up!!! Good wishes to you xx

  • Well they told me I had a 'couple of years', still here annoying everyone in my tenth year.... and lets face it NOBODY is guaranteed tomorrow xx Take care xx

  • Wow you have lifted my spirits no end!! Keep going girl, fabulous xx

  • Hi Joanie

    It is understandable that your emotions are all over the place.

    As Lyndy mentioned in an earlier post the chemo is usually very effective for first line treatment so for the moment I would concentrate on getting through each of your chemos . Try to enjoy your good days and keep busy.

    I was diagnosed stage 4 July 2016 and told I was inoperable unless chemo worked to reduce tumours . Had 3 chemos first and then a scan and fortunately debulking surgery after chemo number 4 . Then 2 more and now Avastin ( number 11 this week of 18 )

    Once you have finished chemo you will have another scan and can then ask them to reassess .

    Many ladies on here have asked for second opinions and you may want to explore this to see if there is a more specialised surgeon who would consider surgery if you still need it after chemo. Not sure where you are having treatment but the Christie Manchester and Royal Marsden London have been recommended if in uk .

    The important thing is you have started your chemo and it will be doing its thing .

    Don't be afraid to ask for support . I had counselling which really helped . Needed to talk honestly to someone who wasn't family .

    Hang on in there . Love and best wishes Kim x

  • Hi Kim, thanks for your reply, I'm under st James, Leeds which I am happy with, in think its just when you see the oncologist they spell things out again and it depressed me, at least when having chemo I feel I am doing something pro active!! I'm going to have a word with my CNS nurse on Tuesday when I'm in for treatment and have a chat with her. Again thanks for your support, you ladies are wonderful and inspiring. Wishing you all the best xx joanie

  • It's understandable to have a meltdown we all have these moments bought on by uncertainty. As Kathy says tomorrow isn't promised whether we have cancer or not. It's impossible to predict what the outcome will be. My CNS told me Christmas it'd better not be I've got Sarah Millican tickets for Nov 2018 lol

    Positive mind really helps. Hard to do easy to say. Have a plan of things you want to do or you will get bogged down thinking about cancer and that's depressing

    LA xx

  • Hi lindy ann thanks for your post and I bet you burst your knickers when you are watching Sarah Millican!!! Wishing you great health xx

  • Hi Joanie,

    I get where you are coming from, but the chemo can still do a lot, and the Avastin is a useful additional tool. Once you get closer to the end of treatment, your medical team will be able to explain what the next steps are, and that will help.

    You can do it!

    Vicki x

  • Yes Vicki, I was wondering about that they should review me and my results and perhaps that is when I might have to ask forn 2nd opinion if I'm not satisfied with their decision. Thanks for your helpful support and wishing you good health xx

  • You can do it!!

    I'm just starting out to had my 1st chemo.

    These gawjus ladeez are my ovarian family 🙌

  • Oh Sena, wishing you the very best and hoping your treatment goes perfectly and yes these ladies are priceless in giving advice and support. Good luck lovely xx

  • Hi Joanie12,

    I understand your dismay and confusion after hearing your post surgical news. Did you have any debulking done during surgery?

    I had basically a open-then-close after examination debulking attempt....only a small omental tissue sample was removed for biopsy. My cancer lesions were too widespread and I had a massive amount of adhesions----everything is all stuck together.

    I was staged as 3C serous high grade. So no good news there. I had three 21 day chemo cycles of Carboplatin and Pacitaxel before the surgery and I started dose dense cycles of the same drugs three weeks after surgery. I go weekly for chemo. I am just starting my 4 cycle of the dose dense regime.

    My CA125 has been dropping ...from 3300 at diagnosis in early March 2017 to 522 two days ago. A CT scan last week showed a marked reduction in disease burden from the previous two CT scans in March and May. So the chemo seems to be working. The Drs plan is for me to have three more cycles of chemo and then be reassessed for more chemo.

    I feel very well and can lead almost a normal life, barring fatigue from the chemo and from the oh-so-frequent hospital visits---between the chemo, blood work, and drs clinics.

    My future is not as bright as if I had been able to have a successful debulking procedure but life is pretty sweet right now so I will not complain.

    I hope you can get some answers from your medical team as to treatment options. The unknown is the most distressing.

    (((HUGS)))

  • Thanks for your post. Bit like you, admitted to hospital as bloods showed something and I was vomiting. They diagnosed (following ultrasound and ct scans) bowel mass, but non operating could right ovary/fallopian/appendix cancer which had adhered to bowel so they took that out. They then referred me to gynae oncologist and in have just started carboplantin/plaxo and in for my second chemo on Tuesday I'm having it every3 weeks. They want to ad avastin also but mynwound is stillmleaking slifhtly so thisnis delayed for the time being. Originally they said three chemos, debulking then more chemo but today he said after discussion at the MDT meeting one of the liver lesions is too near blood vessel and too dangerous to operate that is why I feel delated as if they have given up on me!! However, I havent given up yet, so I'll have to get my head out of my bum and get on with it. Good health and wishes to you xx

  • Hi, I was diagnosed stage 4 in May 2012. I am about to start third line treatment on 29 th August. I had first line during 2012 & second line during 2015. Its does depend on your response to chemos. Have you had/ or been offered any genetic testing for BRACA mutations?. As others suggest, best to talk all over with your oncologist

  • Hi greenpink yes today I had bloods done for braca testing they say several weeks for results. You seem to be doing well with your stage 4 diagnosis and may you continue to do well. Best wishes xx

  • Sorry you're having a wobble, Joanne. I sympathise with you. These ups and downs seem to be so much a part of OvCa. Hopefully you'll soon be on an up again. Hopefully the chemo will help shrink things. It's very scary to be told that tumours are too near blood vessels. I was told the same when I had my first recurrence. It showed up in a lymph node in my neck and no matter how they tried, it was too dangerous to biopsy. A few years later the same thing was said, this time to a tumour between my lung and chest wall. They wanted to biopsy as I had a large melanoma removed from my leg, five years after my Ov Ca diagnosis, and they wanted to know which cancer it was. In the end they just treated it as Ov Ca. The reason I'm telling you all this is to reassure you a bit as I am coming up for my p"Eleven year diagnosis Anniversary in November" !! We thought I wouldn't even live four months to see my youngest son and D-in- L's first baby born. So take heart and try and stay positive. Not always easy, I know.

    Wishing lots of luck and a big hug, with love, Solange 😊 Xx

  • Thank you so much for your story solange,it has heartened me, 11 years, wow that is so great and long, long may your health continue, again thank you it has lifted my spirits xx

  • So pleased it helped you a little 😊 Xx

  • Thank you for posting . Has given us all hope . Wishing you many many more years with your family . Love and best wishes Kim x

  • Thank you, Kim, and may you, too, have many more years. 😊 Xx

  • Good luck joanie. The chemo could make a big difference.

    E xx

  • Hi drdu, I've been following some of your posts re ibuprofen which I am going to enquire about when next at hospital, it is very interesting reading, thank you

  • You are welcome. Chemo is the main thing for you just now but aspirin or ibuprofen could be useful afterwards. Oncologists may be more willing to agree to aspirin.

    Best wishes.

    E xx

  • Hi Joanie I had a small tumour very near my liver which was close to a blood vessel I had four rounds of chemo and a specialist liver surgeon was called into my debulking operation and he managed to remove it! Good luck with your treatment best wishes xx

  • Thank you Alison you have given me hope xx good luck to you too

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