CT scan not what I'd hoped😔

Hello

I have just had a telephone appointment with my oncologist following Friday's scan. I completed round 6 of taxotere mid August and will continue with herceptin and perjeta infusions which I have been having along side the chemo.

So back to the results...he started off by telling me that it's complicated so I knew where this was going! Apparently some of the cancer is under control and some isn't. I have mets to liver 'multiple' and a lesion to right lung. 2/3 of the spots in liver have grown and rest are stable. Lung met has grown by 2mm and some nodules to chest wall. My tumour marker in blood has dropped however from over 800 before treatment to less than 400. I know many of you have said that your oncologist doesn't put much emphasis on the blood work as being a reliable indicator of what's going on.

As I am hormone positive and her2 positive he has suggested starting me on letrozole asap to try and gain control of what's grown.

Obviously I am very disappointed at this result as I and my oncologist had hoped for all of the cancer to be under control after completing chemo. Has anyone else been in this situation? Feeling very fragile at the moment ☹.

Thank you, caroline.

[Hidden]

Hi , I’m the same as you her2 and er positive . I only managed 2 taxotere and have been on Perjeta and Herceptin for the last year. I also take Letrozole for the estrogen positive . I’m just wondering has the Herceptin and Perjeta taken care of the tumours that are Stable and now the Letrozole will work for the other ones ? Have they been biopsied ? My understanding is that you should get any new tumours biopsied to see what you are dealing with. Sorry I can’t be any more help and you are going through this . X

[Hidden in reply to Hidden]

Hi Bren

After first CT in April I had liver biopsy and it still showed as being same as primary 5 years ago , hormone and her2 positive. Some remain stable after chemo but a couple have grown, oncologist Hope's letrozole will work on these, keeping everything crossed. Thanks for replying x

[mariootsi in reply to Hidden]

Sending prayers for good outcomes from letrozole.

[Hidden]

Hi Caroline! Certainly not the news we hope for. I did not have your line of treatment, but when I started Letrozole it definitely did help shrink my lung nodules and lymphnodes. So many treatments out there, and Letrozole has great results. Your onc seems on top of your treatment. I hope and pray Letrozole is successful for you! Hugs!

Anja

[Hidden]

Hi Caroline -

Gosh, I'm so sorry for the disappointing news.

Is it possible that you're not seeing the full benefit yet and that the situation will improve in the other tumors as well?

I know tumor markers are accurate for some...and a 50% drop is huge! I'm hopeful that this is a good indicator for you...

Take care,

Lynn

[Staysha]

Caroline,

I’m sorry your results aren’t what you had hoped for. I definitely know that feeling. I’m similar to you. I had 8 rounds of taxotere with herceptin and perjeta . I’m still on the herceptin and perjeta. All my tumors responded to the taxotere but about 6 weeks after my last round I felt the breast tumor growing. My cancer has different receptors. My lung Mets seem to be the under control. I had a mastectomy to get rid of the breast tumors when I felt them coming back. I hope I’m now just dealing with the her2+. My lung Mets are er- but the ones in my breast were er+ so I’m on letrozole also. I had the mastectomy back in October and so far so good. So maybe the addition of letrozole will be just what you need.

Lots of hugs,

Stacy

[Hidden in reply to Staysha]

Thank you for responding stacy. Interesting to hear your cancer has different receptors, it was my first thought about my liver mets, the ones that have grown but then logically I haven't been on hormone therapy since my onc told me to stop tamoxifen in April after diagnosis of mets, so I'm really hoping this letrozole works on them.

[Hidden]

Hi Caroline,

I hope that letrozole will be an effective treatment option for you following your news. I have been on it since June 2018 and it has really helped me. Let us know how you get on with it.

Sophie

[Have-faith]

Oh I am sorry you are having a fragile moment. I hope it passes soon. This is a rough journey we are on. So many ups and downs. Hang in there. Your oncologist will come up with a plan for you. I was on Letrozole for about a year and a half and it helped. Wishing you the best and that you feel better soon. Faith

[GollyG]

Hi Caroline, I know not everyone in this group has much time for him but when I was at my lowest point Chris Wark's Square One programme of videos really helped, if just to hear a positive proactive approach. You don't have to subscribe to everything he says to feel the benefit. Anyway, it's available free at the moment. Good luck, Gill x

[Hidden in reply to GollyG]

Hi Gill,

I’m glad you benefited from Chris Wark’s programme. I have heard him speak and it seems like his heart is in the right place. But what I don’t like is how he says he had metastatic cancer. His cancer was stage 3, so at that point cancer is still considered curable. I would prefer cancer patients who have had success with their protocols to be honest with people. Otherwise it puts me off whatever else they might have to say.

Take care,

Sophie

[GollyG in reply to Hidden]

Hi Sophie, yes, can't say I know enough about colon cancer to judge - as I understand it, he had stage 3c which does involve spread beyond original site. Anyway I enjoy his interviews with other survivors with longer odds than him! X

[Hidden in reply to GollyG]

No, I’m not familiar with colon cancer either, Gill. It’s good that Chris Wark is thriving and doing so well following his cancer diagnosis. That’s what we are all aiming for!

Sophie

[stardust1965]

Hi Caroline, I haven’t been in your situation so can’t offer any advice. It is so confusing with all the next line treatments but it sounds like your oncologist has got this. Feeling fragile is normal but you’re not alone here. I’m routing for you. If you can, and you feel it would help, take a pamper-day or a me-day or a pyjama-day or even a duvet-day. Sending virtual 🤗

[Hidden]

My wife was on Letrozole for 18 months. It worked very well for her with no noticeable side effects, and she is usually very sensitive to drugs.

[Hidden]

I’m so sorry your results were not all good news. I can understand being upset,I would be too. So confusing when some are under control and others aren’t. Maybe ask if he can biopsy one of the ones that have grown. Perhaps they are different.

[Andersl]

hello lovely

I'm here and hormone positive. I'm on kadcyla. Third line treatment. I've had 8 cycles. Scans in June showed significant improvement.

Side effects are minimal and easily managed

Maybe ask your oncologist if kadcyla is something you can try?

Warmest wishes xx