Disappointed ☹️

[Lockygill]

Not great news yesterday at oncology. After 6 sessions of Carboplatin and my CA125 going down to normal level, it’s gone up again. The ct scan shows some enlarged lymph nodes in my tummy and my oncologist doesn’t really know what to do with me. She has put me on a course of Letrozole and told me they will do another scan in about 4. - 6 weeks. I was hoping all would be okay and I could go on a PARP. That isn’t possible now apparently as CA125 has risen. I’m off on holiday tomorrow, so hoping a bit of sunshine will cheer me up. Onwards and upwards I suppose. It’s all very disappointing x

[Lyndy]

Sorry to hear that you have had this news..... not what you wanted after the hard graft of chemo. Hang on to the positive tho....your ca125 did go down to normal. This suggests that the chemo was effective, at least for a time. The lymph nodes may be something or they may not ( I have had 5 up for over 2 years with no development). Have a lovely break, try to forget about it and perhaps the following scan will give you a better idea of what’s really going on xx

[Lockygill in reply to Lyndy]

Thank you Lyndy. That was good to hear x

[Hidden]

I think your Oncologist SHOULD know exactly what to do next, its his/her job. I think I would suggest go and have a lovely holiday and try to relax then when you get back go and get a second opinion. Take care x

[Lockygill in reply to Hidden]

Thanks Lyn. My previous oncologist was really great and really seemed to be able to explain things and put my mind at rest, but she has lightened her workload and my new one, although very nice is much younger and seems unsure. I’m sure she does know her stuff but she doesn’t come across with confidence. She did say she would discuss me with my old oncologist which makes me feel a bit better x

[Lindaura]

I totally understand your disappointment.

I do agree with Lyndy, though.

You really don’t know what the Lymph Nodes mean.

6 weeks is the normal call for time between scans.

And you get a holiday in there to try and put this out if your mind, get some sun and fresh air and moderate exercise. Come back refreshed.

What concerns me most, is that your Oncologist seems unsure of how to proceed.

Once again, I would ask your Oncologist to give you a referral for a second opinion from one of the many recommended research oncologists at University or specialist hospitals.

This is a tough battle and we have to be knowledgeable and determined in order to get the best answers.

I am so sorry that you must go through this, but our disease is so sneaky, it finds ways to change its DNA to avoid the chemo that once worked so well.

Best wishes,

And have a great holiday!

Hugs,

Laura

[Lockygill in reply to Lindaura]

Thank you. I feel better already, just from knowing that there are others that have had the same sort of thing.

[Katmal-UK]

Sorry to hear this anda s Lyndy says the fact your CA125 did go down shows that the chemo can work. Enjoy your hol, soak up that sunshine and come back fighting! xx

[Solange]

Sorry to read your news. 😏 Have a super happy holiday. Try and put any cancer thoughts out of your mind (a BIG challenge, I know) and be a normal holidaymaker. Keep smiling, sending a big virtual hug for your disappointment, Solange 😊

[delia2]

Enjoy your holiday and maybe find a new oncologist when you get back? As others have said you can’t be sure about what the lymph nodes mean. I had a big one after frontline that wasn’t cancer and it’s been slowly shrinking. Try to enjoy your time away!

[Lockygill in reply to delia2]

Thank youx

[sticky3006]

Hi Lockygill, sorry this has happened and a big disappointment to have your Ca125 increase. When did you finish chemo and are you BRCA positive? As others have said go away for a bit of a break and restore some energy and then maybe seek another opinion on your return. Its always good to have another doctors ideas and a plan, take care xx

[Lockygill in reply to sticky3006]

I finished chemo just before Christmas and am not BRCA positive. I am feeling good so not going to let this ruin my holiday x

[sticky3006 in reply to Lockygill]

Have a lovely time x

[fendweller]

So sorry it wasn't the news you were hoping for , I'm still a newbie really so can't offer any advice except hang in there , get some sunshine and try to put it to the back of your mind till you come home ,I know easier said than done ,but a change of scene some sun and a few glasses of the local plonk will do you good. 👓💼👒👙

[1916]

Sorry for your disappointment, I've had a few. Just and enjoy your Holiday and things will be in more focus when you get back.

Love

Ann xx

[Hidden]

Sorry to hear your news. Similar situation, CA125 normal , scan results Monday.

Enjoy your holiday and come back fighting.

Best wishes

Janet

[Maxjor]

I am sorry you are dealing with this. I did too. They told me I became platinum refractory--I can take in the platinum--had three rounds of it with Gemzar (not allergic) but my ca125 was on the rise. I then went on a clinical trial that did not work after three grueling infusions and then I had progressed to the point of a partial bowel blockage and was in hospital for a week. Now, I am on Taxol and they just added Avastin and I am doing well. Ca125 on the way back down, tumors I could feel before are gone and I am hopeful this will get me to normal ca125 then Avastin as maintenance. Not sure you have the option of Avastin but you might want to ask about this regimen if you haven't had it recently. I did taxol at frontline then not again till now, about 3.5 years later. Wishing you a good holiday and some answers either before you go or as soon as you are back. oxoxxo Judy

[Mptelesca]

Go have a wonderful time and don’t think about it. Lymph nodes can swell due to infection. Chemo does a number on your body while killing the bad cells.

Your dr has you on the right protocol. Just go have fun. Best to you!

Xox

marisa

[CharlotteSo_UK]

I hope you have a wonderful holiday, although I suspect this will be on your mind so may not be as restful as you hoped.

Your comments took me back to 2011 when Mum’s gynae onc said to mum, whilst running her fingers through her hair, ‘I just don’t know what to do with you. You’re not following the path I expected’. She then went on to say that she was referring Mum to the Marsden as they have the expertise in ovarian cancer. So now, mum is on a trial, having been in Letrozole for 5 years, and is doing well. Cancer has shrunk by 59% and she is good.

I just wanted to share our experience xx

[Welshandproud]

Please enjoy your holiday. Everything else can wait until you get back Sending you lots of love xxxx