Enlarged lymph nodes - what next? ?

Good morning ladies and happy Sunday to everyone - have just been scrolling through and reading everyone's posts; I don't tend to post much myself as so many are going through so much crap with this heinous disease and I often feel I don't have much positivity to offer at the moment.

To recap I was diagnosed 3 yrs ago stage 3b high grade - had the standard surgery and chemo but have always recurred within a few months of completing chemo. I've just had a recent CT due to a rocketing ca 125 ( I did the ostrich thing and didn't want to know HOW high )!

I spoke to the CNS over the phone last week - it would seem all major organs are NED ( even my poor old liver which is where I've recurred twice before ) - but I have a 1 cm solidlesion in the pelvis and enlarged lymph nodes dotted around abdomen ( I've had enlarged nodes before but I guess new ones have sprouted like weeds )!

Whilst I'm thrilled with no major organ involvement I'm seriously beginning to question where to go from here - I see my oncologist on Tuesday but have any of you had something similar? Any trials anyone knows about? ?

At the moment I'm well with occasional twinges here and there but getting out there and living life with occasional bouts of tears and funeral planning - bloody hell! !!

Any experiences / advice or general kicks up the arse to pull me out of this sense of deflation greatly appreciated 💖💗!

Love to all - Maz xxx

15 Replies

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  • You do not need a kick up the butt, because as you say you're mainly getting on with living and good for you, it's not easy and it strikes me you're brave and dynamic!

    I was diagnosed at stage 1 so maybe not totally comparable but neither my oncologist nor surgeon thought my enlarged lymph nodes (seen on my pre surgery CT) were a problem.

    Hope someone has more advice to give but my main thought is good for you! X

  • Thank you yembarrow - I've always been a firm believer in getting out there and notletting this beast win - just soooo tired of it all!

    Think I'll feel better once I've seen the oncologist on Tuesday and I've asked my list of questions - I'll take treatment again of course - anything to keep a step ahead!

    Sending love to you xxx

  • Hope it goes well tomorrow, will be thinking of you xx

  • Aw thank you - just eaten a handful of chocolate digestives - sod it let's have the sugar hit! !!

    Am in the frame of mind at the moment that a handful of lymph nodes ain't gonna stop me so let's hope that continues and I don't morph into a blubbering wreck tomorrow! I'll keep you posted xxx

  • Happy Sunday. Morning to you maz sorry I have no advise for you but just wanted to let you know you are not alone I too have 3c diagnosed 2 yeas ago and keep reaccuring had scan last week with ca125 of 900 whilst on avastin so not looking forward to the results but my onc is the lovely prof Jayson or god as he is in my eyes! And he says there are loads of drugs for us so let's keep taking what they give us because one of these drugs is going give us some remission we will beat this beast xx

  • Thank you Alison - got to keep one step ahead! ! Sounds like we're probably in the same leaky boat at the moment - waiting for results is just torture and that blasted ca125 is always there to haunt! !!

    Is it the Marsden you're having your treatment if you don't mind my asking? Xx

  • I'm at the Christie Manchester with prof Jayson where are you? Xx

  • I'm with Dr Fernando at Heartlands Hospital in Birmingham - I have every confidence in him and his team but am considering all options including a second opinion if necessary!

    Have heard your guy's name before so just sussing things out I guess - I'll see what tomorrow brings xxx

  • You don't need any kicks, just a bit more of a break by the sound of it. I've been on chemo for 16 months apart from 6 weeks last summer. I'm off treatment at the moment but with CT scan tomorrow to inform a plan when I see the oncologist the week after. Etopiside was mentioned as my next option but nothing seems to be working. Etoposide seems to have had good results for some, though.

  • Oh Lesley I'm sorry to hear that but that's amazing and a measure of what a fighter you are to take all that for 16 months! !

    I'll see what they say on Tuesday and take it from there - sending you a hell of a cyber hug! ! Xx

  • I to have lymn nodes in pelvis start caeylx on 25th may consultant said my bloods prob wont drop for 1st 3 cycles they are 900 at moment so im just carrying on still working full-time this beast aint gona drag me down onwards and upwards i say sending u hugs xxx

  • Hi Trace and these bloody lymph nodes are a right pain! I had Caelyx as 2nd line and it gave me a break for 6 months - and true enough my ca 125 didn't start to drop until I'd had 2 cycles - it's a slow burner!

    And you're right - I ain't gonna be dragged down either! !!!!

    💪💪💪👊👊 Xx

  • I have a 28mm mass in my pelvis, son suggested pelvis transplant, if only lol. I also had inflamed lymph node but they tell me this is my body working hard to fight the alien.

    I was diagnosed stage 1C five years ago. I know it's going to get me but have written the letters to hubby and the children and even picked a plot. It's not maudlin it's practical.

    If you can get a surgery option I would take it. I'm fingers crossed they can whip it out so I can get back to work and crack on.

    I think we have good and bad days. I'm tired of pain and the unknown but I'm an ostrich fan too. Worrying changes nothing. Positivity makes each day a nicer place to be.

    Chin up we're here for you

    LA xx

  • Thank you LA and that made me chuckle - a pelvis transplant - sure as hell certainly do wish it was that simple! !

    The CNS is going to see if surgery an option at the MDT before I see the team tomorrow - I'm not holding out hope as the general consensus is no surgery if they can't be confident they can get everything!

    Good and bad times is so true - if I'm having a weepy hour then I go with it and wait for it to pass as I know it will!

    Good luck with your PET scan results xxx

  • Hi Maz. Fist a kick up the arse you have given so much good advice on this site you now need to take some of your own advice. I go through the same bouts of tears and also the funeral planning but them think no I will fight on give this beast a kick in the butt.

    My last 123 was 1300. Like you no major organ involved, enlarged lymph and tumor at same place. My next treatment will be carboplain and caelyx js is my 4th line in just on 3 years I also recurred first time in only 3 months.

    I'm sure your OC will have a treatment to put in place on Tuesday. sending you my best wishes. please post and lets us know how you go......,cheers Lorraine xx

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