reoccurance

[Helvelyn]

Hi Ladies

Just facing a reoccurrence in lymph nodes.

About to stat carbo/gem.

How did you find this? Worse or easier than frontline?

Julie x

[OrdinarySoul]

Hi Julie, so sorry to hear this. I’ve got no experience of this (yet) but sending love. How are you feeling? And do you mind me asking how they found the recurrence? x

[Helvelyn in reply to OrdinarySoul]

Hi Ordinary Soul,

I had a lump appear above my clavicle. They then did a CT and a biopsy and confirmed it was a reoccurrence.. My ca 125 had remained the same but it is now creeping up.

Hope you remain well.

Julie

[Katmal-UK]

Sorry to hear about yr reoccurrence. I found carbo/gem for a reoccurrence about the same as frontline. Good luck x

[Helvelyn]

Thank you. Hope you’re keeping well xx

[Laz66]

Hi, I was the same as Katmal. I know when I posted a similar question lots of ladies said it was easier though. Good luck x

[Helvelyn in reply to Laz66]

Thank you….just had a read. Crikey a lot of people seem to have reactions to it.

[kadabra12 in reply to Helvelyn]

I also had a reaction to carboplatin 2nd time round so had to just have pakatoxil, on my 2nd cycle of my 6 rounds but don't worry I've been NED 12 months now and there is another options but I chose to just go with pakatoxil due to possible reaction with alternative. Good luck

[Helvelyn in reply to kadabra12]

Thank you. That sounds hopeful…12 months is a long time . xx

[kadabra12 in reply to Helvelyn]

And hopefully alot longer. Not saying u will have any reactions but if you do there's other options. I was so scared that just having pakatoxil on its own wouldn't work but it has so please don't worry

[Pinkredorange]

Hello..I faced what you are now facing earlier in the year. Rising CA125 and CT confirmed recurrence in lymph nodes. First time I had anaphylatic shock to taxol. I have just finished 6 cycles of carbo and abraxane and will be starting avastin soon. I found it like first round. All the best and hope it goes well for you.

[Helvelyn in reply to Pinkredorange]

Thank you. Did it show up anywhere else or just in your lymph nodes? x

[Pinkredorange in reply to Helvelyn]

Just in lymph nodes and I should have said lymph nodes in groin.

[Helvelyn in reply to Pinkredorange]

Can I ask did they treat straight away or watch and wait. I have been given the option to start now or January as they don’t think it will be detrimental to wait as it’s low level disease.

Very difficult decision and not sure which way to go.

[Pinkredorange in reply to Helvelyn]

I had a watch and wait regarding rising CA125 and suspicion on CT scan so once biopsy confirmed recurrence started chemo a few weeks later approx. It is nearly January now so either way just a few weeks. All the best with your decision.

[Helvelyn]

Thank you Bobbylynn

My Oncologist said that I could wait until after Christmas and have another CT scan to see if has spread. Or I could start treatment straight away. Would find it easier if she made the decision! I know the lump above my coat is growing though as can feel it.

[Helvelyn]

Yes that’s exactly how feel…that I envisage filling up with cancer..

How lovely being in Toronto with snow. I’m in Cumbria ….no snow but very cold. xxx

[Saintgermain]

I'm currently in treatment for a recurrence I was 22 months out as the CA125 is a good indicator for me in 3 months went from 15 to 915. Would of liked a different chemo regime as the carbo/gem I'm on the same as frontline carbo/taxol using the cooling cap again its working very minimal loss after 2 infusions my CA125 is 53, had 2 enlarged tiny lymph nodes that showed up on petscan biopsy from clavicle confirmed same type. If they do biopsy I would request Next Generation Sequencing testing on the tissue I'm in the states. Wrapping my head around a recurrence has been a bit challenging which I didn't have during frontline just pushed thru I try not to overread which has helped.

[Helvelyn]

It’s been just over 2 years for me since initial diagnosis. You just begin to relax back into normal life and then wham it’s back!!

[Barmycharm]

Hi I’m just coming up to half way through carbo/ gem for first recurrence. I have day 8 of cycle 3 due on Friday. I’ve found it quite difficult in that on the second cycle I got a bad reaction to the carbo and so they attempted the next infusion on slow drip. Unfortunately I reacted even worse to that within 15 mins of starting it I completely passed out was sick and had burning prickling sensation round mouth hands and feet. I was scared to try again but also did not want to have to start a new regime all over again.

Thankfully last Friday I managed to tolerate a desensitised infusion where they administer it over 5 smaller bags starting with a 1% dilution and building up to 50%. Apparently this reaction to carbo is fairly common on second time so I’m sure your oncologist will offer you this option should you experience it.

Also several ladies have said they’ve found it fairly ok so it’s 50/50 and I hope you will be fine with it.

All the best xx

[Helvelyn in reply to Barmycharm]

Thank you Barmycharm.

Hope the rest of your treatment goes smoothly. xxx

[Casamimosa]

Finished my chemo Aug 23 after recurrence in lymph nodes, been told lymph nodes back to normal but have got some blood clots on lungs ( on thinners much better not breathless now) feeling pretty good. Chemo was bit rubbish but doable just :)) I had carbo/ taxol as first time. Wasn't sick just so tired and unwell feeling. Have been left with pins needles in feet though, it's improving but annoying. Hope you cope OK. Keep fighting. Sending big hugs

[Helvelyn in reply to Casamimosa]

Thank you and I hope that you have a long time before it comes back. xx