1st Recurrence

[Pryced]

Hi ladies, following a short stay in hospital last week due to a bowel obstruction my oncologist has confirmed that the oc is back after just 4 months on from finishing 1st line. She has suggested maybe weekly Taxol or Caelyx once a month, favouring the latter but the decision will be dependent on an EEG I’m having today. My question is can anyone give me any advice on the Caelyx regime, how does it fit in with trying to continue normal life, I.e. will I still be able to work? I had 8 months off last year so really want to try to work through it this time. Any help or advice would be really appreciated.

[Mrsf49]

Hi, we seem to have followed the same routine, I also recurred after four months and am now on Caelyx. As a lot of the ladies will tell you we are all different how we cope with each treatment but I couldn't work at the moment as I've found it throws up something different each week, first week I'm not too bad, second very weak and tired and weepy and this time my second cycle I had a mouth full of the worst ulcers I couldn't speak or eat and ended up in hospital as I was also neutropenic but I have had a good few days this week and had a good day out shopping at our local outlet Merry Hill.

I also had a bowel obstruction on the first cycle but not sure if that was Caelyx or scarring.

As I said we are all different and I've read that some ladies cope well with it. I'm seeing my onc today and should have my third of six on Monday, I haven't been offered anything else so might ask some questions.

Good luck with yours sorry your back again it's horrible not to have longer and hope you can get to work through yours.

Best wishes Fiona x

[lorraine71-Australia in reply to Mrsf49]

Hi, As Fiona said we all handle chemo differently. I've had a lot of experience with Caelyx I had it for 3rd line treatment and yes had some bad side effects but managed the whole treatment 6 month every 4 weeks with good results and still did do my part time job.

I also had Carbo/ Caelyx as 5th line and now just started the same combo as 6th line my history is as soon as I go off chemo the cancer starts up again.

type Caelyx in Search My Ovacome and you will find posts with advice and tips to handle side effects.

Hope which ever treatment you have gives you good results take care Lorraine xx

[Pryced in reply to Mrsf49]

Thanks, yes we do seem to be following same path, I think I will just keep an open mind and see how it goes. I feel so well at the moment and hope that will stand me in good stead for the regime chosen for me.

[Lindaura]

That is awful news! I am so sorry to hear that, especially as selfishly, I just finished my first line treatment less then 3 months ago and am having my first apt in 2 weeks.

Are you in the USA?

Did you get your BRCA test results yet?

If you test positive for one of the BRCA mutations, you can have a Parp inhibitor , which is another less difficult treatment.

There is also a trial program being run from London, but with a counterpart in the US, callled Care Oncology Clinic that has been getting good results using less toxic meds, that can be taken alongside your new treatment.

Just google them.

Meanwhile, I wish you the best of luck.

Yours in Bath, England,

Laura

[Pryced]

Hi, no I’m in UK, and I’m BRCA negative so don’t think PARP inhibitors are an option. I’ll definitely google the trials although I asked oncologist and she said nothing In my area at the moment.

[RonLitBer]

Pryced, can you have Avastin added to either Calex or Paclitaxel? Both work better with the addition of Avastin. When looked at in clinical trials Paclitaxel and Avastin outperformed Calex and Avastin. However, my oncologist recommended Calex and Avastin prior to Paclitaxel and Avastin because she said Calex is a harder drug to take and I am still in fairly good condition to be able to withstand it. You can check out the clinical trial results here:

clearityfoundation.org/for-...

[Pryced in reply to RonLitBer]

Thank you, I’ll read through the link and discuss with oncologist next week x

[jmackmom]

Sorry. I have no experience with Taxol. I’m fact I refused to take it.

[BeeWild]

Hi I am exactly the same as you 4 months from first line chemo and the beast is back! Not sure where you are in the country but Christie are doing a trial called CEBOC which I start on Monday it’s only at the Christie at present and only 2 of us out of 30 are enrolled on it at present!

Here’s a link to it, might be worth asking if you can be referred?

cardiff.ac.uk/centre-for-tr...

I too want to stay working and although this is weekly it’s meant to be quite tolerable (got everything crossed it will be!) I’m also going to be trying the cold cap as I want to keep my hair if I can so I feel better in work x

Sending you hugs and best wishes

Bev xx

[Pryced in reply to BeeWild]

Hi, I’m in Sussex so little bit too far away to ask about this one x thank you though, I will keep an eye out for something locally x

[BeeWild in reply to Pryced]

Hope there’s something suitable for you locally x good luck with everything x

Bev

[Pryced in reply to BeeWild]

Thank you, and to you too x

[CynD]

Hello Pryced! What you have posted about is my NEXT worst nightmare. Like Laura in Bath, I'm coming up on that next appointment where I find out if there has been a recurrence. In other words, do I start my 2nd next 3 months in the clear again, or is it back? I feel like I've spent this 1st 3 months vacillating between total panic and some strange kind of peace. I just met with my new regular Onc last Thursday and he told me flat out there is a 90% chance I will have a recurrence. I don't know why but this hit me like brick! No one had ever actually said that to me before. I knew and had been told this cancer is "highly recurrent" but that was usually followed by "but we don't know anything for sure because everyone is different." I know worry and panic aren't going to chance a thing. I've already done my CA125. Whatever is, already is and I'll find out what is this Tuesday. But, MAN, it's so hard to live like this. All the questions, all the fears. I'm here in the US and often wish I was in UK because it sounds like you guys have more treatment options and better care. Maybe that's just the grass always looks greener on the other side of the fence phenomenon. Anyway, how are you coping? When I was 1st diagnosed I was so busy dealing with the business of cancer (2 of them!) something just kind of kicked in and I just did what needed doing. Then things slowed down and the news got better and it's been shear hell ever since! Do you find that "thing" kicking in that just sort of takes over and puts you in gear for the next leg of the journey, or what? What can I do, if anything, to make this better for you? I really want to know! Sending hugs and prayers!

...Cyndie

[Pryced in reply to CynD]

Hi, it’s very hard to get my head around this recurrence as I feel well in myself, I have been back to work since Jan and felt things were getting back to ‘normal’. I was also told of the high recurrence likelihood but was feeling positive it wouldn’t be for ages. I’m just concentrating on today for now, they’ve said it’s no longer curable, which is scary, but hopefully the chemo will keep it at bay for a while. Good luck to you for your next appointment, I’ll be keeping my fingers crossed for you x

Diane