Totally Gutted!!: I asked my CNS nurse to let me... - My Ovacome

My Ovacome
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Totally Gutted!!

I asked my CNS nurse to let me know my latest CA125, she rang today and sadly it has risen from 102 in March to 402 today, my CTscan shows a "few abnormalities", but she wouldn't go into details. My appointment has been changed from seeing a Registrar to seeing my Oncologist. She said I have a few options that need to be discussed. As you can imagine I am absolutely devastated. My CA125 has never gone below 38 even after de-bulking and chemo so I guess it was only to be expected, but I was sort of hoping that my CA125 was high due to my Rheumatoid Arthritis, or infection and that my scan would remain NED, but its not to be. I dont know what a "few abnormalities", means exactly but it doesn't sound good. Somehow between now and next Wednesday I have to find some courage to start treatment all over again, just feeling very weak and vulnerable at the moment.

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So sorry Lyn to hear your news, I can totally understand how gutted you must be feeling right now and I really feel for you. I’m sure once you get your head around it and get your fighting spirit back you’ll face the chemo again with gusto like you did last time, and maybe a different type of regime will be what’s needed to keep the beast in check and give you a very long remission.

Nothing more to say except I’m sending you tons of virtual hugs and positivity for the next treatment, take care,

Liz Xx 💖

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Thank you Liz trying to stay positive and upbeat but its so hard! xx

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Hi Lyn1987... not the news you wanted I know. I also have Rheumatoid disease and I do think the inflammatory nature of this interferes with the ca 125.

Try not to panic- ‘abnormalities’ are common on post first line scans- particularly if you have a radiographer determined to report every bump or tiny shadow.

If you have no symptoms then it may well be suggested that you go on watch and wait. Even if it is a recurrence, you have choices, you could look into a trial or another surgery. Take your time. Best of luck xx

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Thank you Lyndy, the waiting to find out my CTscan results will probably kill me before any old cancer. Just feel like running away to hide. 😢

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I know...we deal with such enormous ups and downs on this journey...maybe you should hide for the weekend?! xx

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Dear Lyn,

I totally understand what you are going through.

Same thing happened to me after 6 months from first line. I felt so great,

I expected to hear that my CA-125 had dropped to 3. Instead it went from 11 to 69 and 6 weeks later after my scan, it was 473.

And lesions showed up on the scan.

We started Carbo/ Caelyx right away and except for the first week after infusion, it was a breeze and my CA-125 is now 15.

I just finished and have been on Niraparib for the last month.

I hope it keeps the beast at bay, because I find it totally refreshing and feel better than ever.

So, do not hesitate.

Hop on the Chemo train and give the beast what it deserves!

Hugs,

Laura

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Thank you Laura, I had very bad Neuropathy in both feet after 4th chemo cycle, they stopped taxol, but I am still suffering 5 months later. So nervous of starting again. But I realise that if it is a recurrence I will only get a parb if I undergo another chemo cycle. I was hoping for Niraparib eventually, but at the moment feel caught between the rock and a hard place.

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It is usually Carboplatin and Caelyx for first recurrence and if you respond well, you are eligible for Niraparib afterwards.

I wish you the best of luck on this.

Hugs,

Laura

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Lyn the others have given good advice, but l totally know that feeling of wanting to run away! Mine came back after 9 months. We ladies do what needs to be done, sometimes with a heavy heart and a fear for our future. Once you truly understand what your facing and a plan is in place, you'll wear your old armour and deal with it all head on. Good luck and be thinking of you.

Sylvia x

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Hello Sylvia - Thank you. xx

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Oh Lyn, I’m so sorry to here this , I sometimes think they don’t understand the agony of waiting causes us all . I’m sure you will feel better when you know exactly what your up against. Are you at the Christie? I went for my blood test today and am seeing the prof. On Monday, so I understand how you feeling. Good luck .

Sheila xxx

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Hello Sheila - I am in the south and under the Marsden and to date have received excellent care which I am sure will continue, but it doesn't stop me worrying. Wishing you all the very best for your test results on Monday. Take Care xx

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So sorry to hear your ca125 has risen. I am in the south too but being treated at the Royal Surrey. I hope you will soon have a new treatment plan and sending you lots of love and courage x x

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Thank you 💕

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Hi hunny,

You can do it!, whatever they throw at you, it is in your best interests and they know what they are doing.

We have all been in the low place, but seriously, the only way is up.

The waiting is the most difficult, but try and occupy yourself, get the family round, have a spa day, do some knitting, anything you like and enjoy doing.

Let us know how you get on, I’m sure you will be fine,

Carole xx

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Hi Carol - Thank you I will try to keep busy, but my mind has gone into overdrive and I can't switch off the worrying.

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Sorry to hear your rubbish news - it is so hard to keep picking ourselves up again and again - I think most of us are realistic about the nature of this disease but it’s only natural that we hope rising markers are down to other things - hopefully you can distract yourself between now and next week until you see the oncologist - once you know the details and have a plan things may seem more manageable - wishing you well x

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Sending love & courage for the next hurdle. You will fly over it Lyn xoxo

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So hard to start again. I hope that your meeting with your oncologist is not as bad as you expect.

Best wishes

Fay

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Hi Lyn sorry to hear your news no wonder you are low. Take heart at the people in this forum who have been through this and made good progress. I hope you can focus on positive thoughts before your meeting next week, and remember we will all be thinking of you so let us know how you get on. Wishing you good luck and best wishes for your meeting.

Pat xx

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Sending hugs and support. Waiting is so hard, but they will have a plan to deal with this!

xx Gina

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Argh, sorry Lyn. But as others said.. there might be lots of options, maybe not even chemo? My scans always showed one thing or the other, and my ca125 rose slowly. Still I went on watch and wait for over 2 years, and sometimes what showed up on the scan at one time wasn't visible anymore 3 months later. Best of luck with the appointment! Xx. Maus

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Hi Lyn am so sorry to read this about your latest ca 125. This just happened to my sister. She made it almost a year cancer free was doing great and feeling great. Her ca 125 went from 9 to 13 in March to 32 this month. Scan ordered and yep several new spots scattered in abdominal area. Once we got over the dread we put our warrior hats on. She will start carbo and doxil next week. Ca 125 each time tested and new scan after 3 rounds. Her infusion is every 4 weeks. We look at it as her doctor has been on top of things, caught earlier this time and she is in great shape much better than at initial diagnosis. It still just stinks so much we have realized now this has to be treated as a chronic disease. We send you tons of hugs and best wishes from the states. Nancy

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I’m so sorry to hear your news and I empathize about the neuropathy. I think you should push hard to get a treatment that doesn’t cause neuropathy. I hope there are some. Maybe the CT scan abnormalities aren’t cancer. I had an enlarged lymph node on CT but PET scan showed it wasn’t cancer. Good luck with everything. Xx

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Oh lyn, so sorry you are facing more chemo, know

how devastating that is and how vunerable you are feeling but you can do this. Please let us know what happens at your meeting. We arehere for you, Kathy xx

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Don't get discouraged, were there's a will there's always a way. Keep up the good fight. Ask if your a candidate for intraperitinel chemotherapy. It extends reoccurance time to up to 3 yrs . I also say I was gutted, my mom hates that term. But that's what was done. Stay strong. ❤❤Liz

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Dear Lyn so sorry to hear your news. Thinking of you, the waiting is so hard. Stay strong, sending hugs xx Lesley

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Dear Lyn. I am so sorry you are at this frightening place once more. I offer my heartfelt love to you with hugs. Wishing you a full recovery - Tudor Xx

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Lyn I’m so sorry to hear about the potential recurrence. You can do this. Sending you a hug

Joy x

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Hi Lyn,it's a total bummer when we hear CA125 risen plus abnormalities.Personally,I reckon at this stage my insides are totally abnormal and if I got an NED result ,I'd be worried!! There are so many treatment options available now outside of Chemo so,maybe your consultant will discuss those with you or you bring the subject into conversation.Unfortunately ,we can't put our Cancer in to an envelope and post it back,so,like you,our treatment must include positivity,strength,hope and courage.Abnormalities might mean seedlings or inflammation .xx

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My thoughts are with you, it can be a tough journey at times.

Much love xxxx

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Sorry to hear your news but pleased to learn you are being treated at The Marsden. You are in excellent hands.

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So sorry Lyn--not the news you wanted for sure. I am living my second relapse and hate to say I have experience but finding out has been more devastating to me than after I get used to the idea and know it will be treated. Wrapping your head around it is step 1 and you have some time to get used to it. Step 2 is when you get your ducks in a row about fighting those abnormalities. (I think doctors call anything out of the ordinary "abnormalities" so my guess is they just mean its not NED and its due to those....I would not think anything more sinister). Please keep us posted and good luck. oxoxo Judy

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Thank you 💕 I think it is the raised CA125 that is freaking me out. It has quadrupled in 11 weeks. 😢

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Hi Lyn. Just saw this. Everything wot everyone else said, plus big hugs from me. Do let us know and hoping for the best for you.

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Dear Lyn...I know exactly how you feel. The initial shock just kicks you down. You have been through this before, so, you know that you are in good hands. I hate getting the news over the phone because it just sends me into orbit. Abnormalities can mean inflamed lymph nodes. You said you have RA and an infection. Perhaps that was the cause. Just hang in there (easier said than done) and go in and talk to your onc. Praying and sending you hugs.

XOX

Marisa

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Really sorry to hear your news so soon after your wonderful cruise .

I hope your successful holiday will sustain you to tackle whatever treatment is offered . You can do it !

Mary 💐

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Lynn, I was just so, so sorry to read your post. I can empathise with how you feel as I was in an identical situation this time last year. I was completely devastated, in many ways I found it worse than when I was diagnosed. Like you, my first line chemo and de-bulking had gone extremely well and as soon as I finished as was accepted for a trial for niraparib, so felt really optimistic and positive. My CA125 started to rise only 2 months after my last chemo and some new disease was found in my pleura at the 3 month scan. On the advise of my oncologist I opted for 'watch & wait' and was put onto letrozole - he wanted me to have a break from chemo before more treatment. The letrozole stabilised my CA125 but I had a pleural effusion in July and then again in November, it was at this point that my oncologist felt that new treatment should begin - weekly taxol with fortnightly Avastin. I don't regret the 'watch & wait' as it enabled me to get my head around what had happened to me and come to terms with it - for me, this was really important. I also had a reasonable summer, doing nice things and going away on holiday. I started the new treatment at the beginning of December and, touching everything, it is going really well at the moment and my oncologist is delighted. It is a very doable regime and I am able to enjoy a fairly normal life, including taking a week off occasionally to have a holiday. Sorry about the long post but I just felt so much for you and will be thinking about you until I hear more news after your appointment on Wednesday. Jx

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Thank you 💕 I am glad to hear you have a treatment plan that is working well, long may it continue. My Oncologist appointment can't come soon enough and if treatment is needed they come up with a good plan for me also. Take Care xx

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Yes. It’s good if you can put your trust in the medical people who know what to do. I trust that my oncologist will endeavour to do all she can to get my treatment right. Good luck x

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I am so sorry you have received this news. Definitely gutting. Hugs. I will say a quick prayer for wisdom and how to move forward whatever the situation turns out to be.

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Thank you 💕

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