I had my thoracic surgery on 10th May and saw my oncologist for results on Monday. It has been confirmed as metastatic ovarian. The surgeon removed one lymph node and another small growth but there’s one remaining on the diaphragm which he says is too dangerous to remove and one on other side of chest nearer heart which they also say is inaccessible.
The growth he removed had not shown on any previous pet or CT scans so not sure whether it’s grown since or was too small to show up.
I’m slightly bemused by that as I was under the impression that the scans picked up every little suspicious growth so now I don’t feel so confident that a scan really tells the whole story?!
However my oncologist has suggested another CT scan to assess the growth again and then move forward with Calyx. She did also mention that f they are still progressing slowly it might be worth trying Letrozole for few months but having read the side effects of that I’m not sure I want to go that route, I had 10 years of hot sweats and other menopausal symptoms and not keen to be put back into all that.
Even though we’ve been monitoring this for a year and I knew it was recurrence I still had that little bit of hope that it was something else like residual covid infection causing the enlarged lymphs. So now I know for sure it’s back I need to do all my research and get prepared to kick the enemy out again.
Any advice and experience of Letrozole or Calyx would be much appreciated. The chemo would be four weekly for 6 doses and then hopefully if I respond well I can go onto a parp inhibitor.
All the best lovely ladies
Claire x
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Hi Claire,I have recently started on carbo/caelyx,which so far I have found easier than carbo/ taxol. My Oncologist has suggested Letrozole,when I finish chemo, there are side affects with all these drugs. This is my second recurrence, and I have lymph node by aorta,one on perineum, and few that are a lot smaller. My CA125 was 232 when I started,and it is now 46, so I am hoping that after the chemo yesterday it will have gone down further.
Hi thanks for your reply. I’m glad to hear you’re finding this chemo combination better than carbo/ taxol. I wonder why your oncologist has suggested Letrozole after chemo and mine before.
You’re right of course any of these treatments have side affects and we just have to hope the benefits outweigh them.
Fingers crossed for you that your CA125 comes down again and all the best for your ongoing treatment
Hi Claire sorry to hear about your lymph nodes which seem to be in same position as mine. I see oncologist this Wednesday for PET scan results and am dreading this. I have had a lovely rest from chemo since beginning of the year but suspect that will have to start some sort of treatment again. Have you looked into whether you would be a suitable candidate for the cyber knife procedure, this interests me. Not a cure I know but your body is not worn down with chemo. Sending positive thoughts to you. Liz x
Hi LizI haven’t looked into the cyber knife procedure as yet but am going to start doing a lot of research now. Next week we are going to the Isle of Wight for a week so Im going to try to put it to back of my mind till I come home and then start to look into it.
Fingers crossed for your PET scan results, let us know how you get on
love the Isle of Wight it was like a second home for me as a child. Enjoy your week, we have just been to Selsey for a week and it was great I found it easier to put OC to back of my mind. X
That’s lovely that you managed to get away and leave the oc at home 😜 I plan to do the same! It’s my first time to IoW so I’m looking forward to exploring it.Take care xx
I have been on letrozole since Feb 21 and like you was worried about the side effects as I didn’t want a repeat of menopause symptoms. However for me the side effects arent too bad, joint and muscle pain mostly. Of course everyone is different but it maybe worth trying anyway. Good luck with your continuing treatment I hope you find something that works for you. 😀
Hi thank you for your reply. I’m glad you’re not feeling too many side affects from the Letrozole. I will have to wait till my next scan results come back and then see what my oncologist suggests for the best but at least I guess it’s good to have some options xx
Hi Clare. Sorry you are back to treatment. I had carbo and caelyx for first recurrence and found it quite tolerable because of the four week cycles. I did feel crappy the first week but then fine for three weeks. You have to moisturize hands and feet the first week and be gentle to your mouth, rinsing with warm water and salt or baking soda. I hope whatever you choose it works well!xx
I have been on Letrozole for three and a half years. It took about six weeks for the worst side effects to settle down, aches and pains, hot flushes and headaches. Don't know whether the symptoms eased, or I got used to them. As every scan, so far, has come back 'stable' I think, for me, the side effects are worth it. Best wishes.
Hi that’s good to hear that the Letrozole is suiting you and keeping your disease stable. Do you mind me asking what stage you were at diagnosis and what were the circumstances that your oncologist started you on it? Best wishes xx
I was diagnosed 4b had chemo, op, chemo, then another scan. The scan showed an enlarged inguinal lymph node, I had another op to remove this. Had 3 monthly scans and another 2 enlarged nodes were discovered 9 months later, if my memory is correct. This is when I was put on Letrozole and I'm so grateful it has kept my cancer stable for three and a half years (so far)
After a year a bone scan was requested, took 10 Months to get one. Found I had osteoporosis and am now on Alendronic Acid tablets and Calcichew D3 Forte tablets for this. I have never drunk milk, not even in tea, never eaten yoghurt or cheese so this is probably the reason for my osteoporosis and not the Letrozole. Best wishes
Well that's fantastic news. I have small cancerous lymph nodes do hoping I get the same good results too. Is there a be specific duet you keep to. I.e vegan or vegetarian?
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Post treatment controls
CA 125 levels rising
CT scan, MRI or PET scan, which is the best ?
