Hi I m new on hear. I m 37 and was diagnosed with ovarian cancer again just before December 2021. first symptoms I had was fluid build up around my stomach middle body I admitted my self in to A&E were a number of tests were carried out bloods' urine and emergency x rays and CT scans. had to wait for results my temperature was also high along with heart beat beating to fast. on scan results confirmed I had a large cyst on my right ovary and on further investigation this confirmed the cyst was ovarian cancer. during my cancer journey I have had 4 drains 3 blood transfusions during and before my surgery as given the extent of my diagnosis I was very poorly. came through my surgery but after a few weeks noticed a lump had formed on my right side were I was last drained in my stomach. notified the hospital team. was asked to come in as lump was starting to cause a lot of pain and discomfort was sent for emergency CT scan by this time lump had doubled in size and had changed shape and colour CT reviled the lump was a tumour having been going to my clinic appointments I was thinking the worse and I was right they told me none operable meaning can not operate as to risky to were the tumour is sitting and the level of growth. Not only did I have to cope with that news but also I was told on looking at the CT scan that my cancer has now spread and the 2 rounds of chemo has done nothing except put me in hospital through a severe allergic reaction of a itchy rash high temp chest infection and water and was admitted for 10 days to clear the infection. chemo now put on hold and now will need radiotherapy to try and shrink the tumour however it wont do anything to the other remaining cancer areas. I was diagnosed at stage 3 but now I m stage 4 I m really scared but trying my best to keep strong cancer has now spread to both lungs and spotting on my liver as well as the tumour area. I really hope this treatment will work this time but I just don't no and that scares me so much. I wanted to share my journey so that I could meet people in similar situations and to gain much needed support and to support others who are living with this horrible disease and no we are not alone and can overcome cancer.
my cancer journey : Hi I m new on hear. I m 3... - My Ovacome
my cancer journey
Hi Dolphin, I’m so sorry you’ve had to go through so much, I’m in the UK with stage 3C/4 Ovarian cancer.. When you were having chemotherapy had they administered antihistamines just before it, they can help with allergic reactions?.
They will hopefully continue with the chemo or try a different one once your infection is under control. How do you know that chemo hadn’t started working as a ca125 result can be elevated with infection and inflammation and if you had a bug brewing maybe it elevated results and not the cancer.
Do you know if you have the brca gene as a PARP drug may be available to you actually there are PARP drugs available for brca negative too. Wishing you a speedy recovery on your bug and a quick restart on treatment please let us know how you’re doing x
hiya yes was given antihistamines to get rid of the rash also put on strong steroids and a antibiotic uv line in my arm to fight the infection. it did clear up was later told that it was the 2nd bag of chemo the toxocol that caused my reaction. as results were shown through my bloods my immune system also nearly crashed because of the infection. it was the recent CT scan that reviled that the chemo hadn't worked and my consultant telling me. I was tested for the brca gene but came back negative. Thank you and yes will keep you updated 🙂xx
Hello Dolphin
I just wanted to send you love and solidarity. It sounds like you've been through an awful ordeal. I can only imagine how you're feeling right now.
I know it's hard but try to find a little positive in every day.
hiya awww thank you yes I m going through a bit but I try my best to stay strong and positive all the way. will keep you updated sending love hugs to you to 😊🐬💪xx
Hi DolphinI'm really sorry you're going through this. You've had a traumatic time.
Like Dolphin I also wonder if you could try Parp inhibitors?
Has your Dr talked about them?
Do you have anyone you can talk to , a counsellor?
Your specialist nurse should be able to help you .
It might help to talk things through with someone.
Please do let us know how you get on.
Liz xxx
hiya thank you 🙏 yes it has been quite a roller coaster of a time in and out of hospital ect. but I just have to keep going despite my struggles ups and downs. parp inhibitors? never heard of it to be honest could you shed more light on this please? yes I have support person through my mc Millan nurse who's been great and very supportive in every way. Yes its definitely good to talk to different people and was recommended to join on hear witch I m very happy I did now because everyone is lovely and kind on hear witch is a massive comfort to me 😍 and yes will keep you updated on how I get on with next faze of this journey. 💪🐬💜xx
Hi.Here is a link to Parp inhibitors info from the Ovacome siteovacome.org.uk/targeted-the...
You could call the Ovacome support line too for more information .
There was a Webinar recorded here but I Can't seem to find it for some reason.
Maybe someone else will have a link.
Love
Liz xxx
Dear Dolphin, you really have had a bucketful in a short space of time and you are a very brave and sensible woman with a kind and empathetic heart. I am so impressed with you. I am stage 4, too. Hold on to the fact that they do have a plan for you. Radiotherapy, Number 1, which is going to shrink that tumour. Chemo is only on hold, not dismissed. They will find a formula/Way of giving it to you that will not produce your previous reaction. All of us stage 4 are living with cancer, as opposed to getting rid of the darn thing. It is only natural to feel a whole range of emotions and you do need support psychologically as well as physically. You are right to post on here fir support, but make use of other sources as well. Does the hospital offer emotional support? Do you have a hospice (they are not only for end of life) near you. They will provide all different kinds of support, e,g, emotional plus relaxation support e,g. reiki etc. I suggest you make use of the full armoury of support, including telephoning Ovacome, etc, , Living with uncertainty is always hard, but we need to make the best we can of the living and I am sure you will do so. Let us know how you do. Sending you a big cuddle. Emma
hiya awww thank you so much means a lot 🙏💜 yes I have a lot of support from the hospital and my mc Millan nurses who have been fab. yes will be looking into counselling as well because this has affected me a lot and will take any support given. been told you are at stage 3 was bad enough but now told I m stage 4 is something else and yes you do automatically think oh no what now ect its only normal but yeah we just need to keep going and remain positive no matter what. I m sorry to hear you are also stage 4 but sending you big hugs 🙏😘 and hope you will also beat this 💪 stay strong lovely and will keep you updated as I would like to hear also how you are doing 😊xxx
Hi dolphin37, I echo what others have said, you have had so much to put up with, yet you are still here and giving it your all ❤️ Do you know what type of OC you have? Knowing this and if you have a BRCA gene fault could really help in finding the right treatment.
Ask your oncologist if they have investigated this.
You are in a tight spot if the chemo is not bringing down your ca125 marker. If you are not already at a specialist centre (Royal Marsden, Christie etc) then get yourself referred to one because they can access the best and most up to date approaches to help you.
Big hug, you are amongst friends here, we know the journey you are on xx
hiya thank you. I m not sure I know I had a blood test to check the brca gene but came back negative. yes will mention this in my next appointment thank you yes was crushing to know chemo hasn't worked but its only put on hold till they tackle the tumour as radiotherapy will only target that area and not the other areas were the cancer has spread. yes definitely feel I m amongst friends hear witch is lovely and gives me great support. sending you love hugs also. and will keep you posted 💜🐬🙏💪xxx
Hi Dolphin,
I believe some people are BRCA negative but their tumours are BRCA positive. Perhaps they could do a biopsy to find out and also find out if you areHRD? I think both these can influence the meds they give you to get the best response. I think the suggestion you ask fir a transfer to The Marsden (Sutton and London - Two sites) or the Christie, Manchester, very good. You have nothing to lose by asking. Parps are a new class of drug which target only cancer cells, whereas chemo hits all body cells. You could ask about parps. And about trials. Ovacome willbe able to give you more info as well as your onc.
Hi, dolphin37, Sending you love and positive vibes. Hope you're treatment starts to work and you can get some positive results soon. You have been through the mill but you have a lot of support from us ladies here who share your pain and your gain. You can do it! 💖 😉 Xxxx.
hiya awww thank you means a lot 🙏💜🐬 yeah so do I and yes the level of love and solidarity on hear is just overwhelming and touching but yes we all must carry on the fight 💪 xxx 💜💜💜 I feel I have made friends already on hear. will keep you updated also if you could let me no how you are doing to 😘 xxxx
Hi dolphin, going to get my blood's done today so fingers crossed that the dreaded number has not got up again. Speaking to my oncologist next week so I'll know more then. Still taking my daily tablet and hoping it's doing it's job. Thanks for asking xxxx.
Hi dolphin37,
Thank you for your post. I am sorry to hear you have been through so much and I see that there have been a number of supportive replies from other members that I hope you have found useful.
If you would like to speak to us for any further information or just have a friendly chat, please don't hesitate to contact us. You can reply directly through this forum or call us on our support line (+44) 800 008 7054. We’re here Monday – Friday, 10am – 5pm (U.K time).
Best wishes,
Sorcha, Ovacome Support
Bless you, you have been through a lot. Not an easy journey for you, for sure, and for anyone who has ovarian cancer. If your recent chemo didn't work and/or you've become resistant to it, there are still many options that are available and perhaps you can also discuss with your oncologist the options of suitable clinical trials. Keep strong and keep the fight on. Every day is a gift and a new hope for a suitable treatment that will work for you.
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Ovarian cancer
Seeking advice about starting my Ovarian Cancer journey
