Diagnosed last year with stage 3C, after 6 cycles chemo no surgery possible.
Had 6 months no progression but now large tumour has doubled in size over last 3 months. Starting more chemo soon. They want to try carbo/caelyx this time. My mind in turmoil at the moment. I have no family and live alone so have to be able to live independently. Wondering if its worth it as obviously no chance of cancer going away.
Hi Rosebine, This must have been such a shock for you after six months of no progression , especially with no family and living alone,but sounds as if you are very independent. You will need time to try and become positive again, but hopefully you will see your way to having carbo Caelyx.
I am on first recurrence, an d I am hoping that the chemo I have just started will work, but there is no guarantee.
Take care, a d give yourself time to consider what you really think would be the right decision for you. xx
Hello rosebine
Sorry to hear that you are in this situation. I think you are wise to consider your quality of life as well as the options around treatment. Might this be a good time to get a second opinion, if you haven’t done so already?
I had a second opinion after the first hint of recurrence and although I didn’t go forward to treatment, it was really interesting and informative to hear what the specialist centre thought about my disease.
You might find it clears your mind about the right path for you xx
Hi Rosebine. That’s really disappointing news. I had carbo caelyx and was wiped out for about five days out of the four weeks so for me it wasn’t as bad as frontline. I think if it works even three cycles might shrink the tumor. I’d be worried about how it would affect your comfort if you just let it grow. You could always try it and then quit if it’s too hard? I wish you the best in a difficult situation. Xx
Hi Rosebine , dont give up .. I found caelyx alot better than frontline , yes feel yuk for about 10 days which you will work around .. im on my 5th recurrance and bloody not giving into it yet .. so come on you can do it . All the best Rosebine x
Ooh it's definitely worth it. Many of us have carried on having great quality of life for years living with multiple recurrences. It's an entirely personal decision though. Love and strength to you. 💐😘
Hi. I also live alone and am about to start Carbo/Caelyx. We have already done Carbo/Taxol, so I am sure we can manage this too!
Even if the cancer can't be erradicated, hopefully the treatment will see us through for a bit longer yet!
Jenny
Hi Rosebine, I also live alone and although I am fairly new to this as I've only just finished front line I think it's worth carrying on. Firstly the treatment could be a walk in the park and if not you can reevaluate then. Secondly you don't know what trial or treatment is around the corner that could work for you. Thirdly you should discuss your thoughts with either you CRN or oncologist as they may know more than you regarding your situation. Take care and all the best, I so know how hard it is on your own but we're all here for you. Take care Sue xx
I think if I had been offered the op I would feel more positive, but the size of the tumour means it will not shrink much if at all. Consultant has said definitely no op. Ive got a couple of weeks to decide, thanks for your input everyone
Hi Rosebine, so sorry you are facing this. All of us who have had a recurrence know that we cannot be cured but there are a lot of treatments out there. I thoroughly recommend a consultation at a top cancer centre. When I completely failed my frontline chemo I went for a second opinion and ended up on a clinical trial on which I have been for the last 2 1/2 years - the cancer is still there but has shrunk by about half.
Hi, What good advice you've been given by fellow sufferers so far. Yes, it can be tough coping with this disease if you live alone but there are advantages too. For example, you don't have anyone else to care for or clean up after; you can do what you want, when you want; you are also not causing another person a good deal of pain and worry. I've been living with OC for nearly ten years and have done so with the support of friends, helpers and a lot of independence. Believe in yourself and you can do it! There are dark moments but that's unavoidable even if you have a partner. Good luck and I hope you find strength from the support you will get from this forum. Gina x
I would agree with others that you should definitely ask for a second opinion. On diagnosis with 3C my tumour was the size of a grapefruit. Two months later when I had my total abdominal hysterectomy and debulking surgery, it had grown to the size of a large melon, so they do remove larger tumours. I then had 6 cycles of Carbo Taxol and have now been without evidence of disease for 4 years. Like you I live alone, but did have family support available after being hospitalised 3 times during chemo.
Recently 2 of my friends have had recurrences treated with Carbo/Caelyx and the one who lives alone, found it much easier than the Carbo Taxol, and in both situations, the tumours reduced in size by a significant amount.
You could ring the Ovacome helpline and chat through your concerns with someone who is both knowledgeable and very supportive. Obviously things are complicated by Covid 19 right now, but I have always found them very helpful over the years. The number is
0800 008 7054.
Hope you are able to get answers to your questions and come to whatever decision is right for you.
Best wishes, Barbara
Thanks all. just had a phone call from the hospital Im to start chemo again next Friday so got to make my mind up soon ! Was quite prepared to have to wait for a while because of COVID but Maidstone oncology have been really good through this whole diagnosis (100% better than the first hospital I was referred to!)
My tumour(s) 21cm so bigger than grapefruit, more of a melon !
Do give consideration to seeking a second opinion regarding surgery. If it’s doubled in size in six months I wonder why it wasn’t operated on after you finished the first line chemo, when it was half the size. There may be good reason, perhaps the tumour is growing into a vital organ or you may also have lots of tiny tumours that they cannot all be removed. Whatever the reason, it’s probably worth seeking a second opinion as different surgeons have different skills. And if both do agree, you’ll at least know you tried and be more comfortable with the new round of chemo.
Hi Rosebine. I'm 74 (you didn't say how old you are). Diagnosed 3c at age 65. Tumour then described as "bigger than a baby's head". I'm about to have carbo/caelyx for the 2nd time. I had it for 1st recurrence. I found caelyx to be a difficult drug, side-effects wise but you always knew where you were with it - you know exactly what each day will be like (for the 1st week). For me, first of all it was fine for a couple of days, then terrible for a couple of days, then coming out of it. But I had mouth ulcers all the time. After the 2nd dose, my onc decreased the dose by 10% and, still not easy, but tolerable after that. It took me straight into remission & a trial of the God-send drug Avastin to follow (as maintenance - not a chemo drug - doesn't make you ill). Thanks to those, I had a splendid remission of 5.5 years - able to do all I wanted to do.
Now I'm back on the carbo/caelyx for 3rd line - began it yesterday. Hoping it will be as effective this time.
I can't help wondering why you weren't operated on straight away. Initially, I had an op, then 3 months of chemo, then a further op, then 3 months of chemo. I'm sure that ops aren't usually considered after 6 months of chemo, it's usually before.
I wonder what you've decided. Personally, I just can't give up. If you decide to give it a go, I suggest getting some meals in the fridge to see you over those few bad days in the 1st week. Best wishes. Pauline.
Only you can make the right decision for yourself. Are there outside agencies you can use to help with some things. I know the American Cancer Society supplies a lot of information and help . to those in need. It sucks being on your own thru this. Have a talk with someone your Dr office if that is available. Stay positive and strong. As my Dr says we need to treat as a chronic disease.
Post surgery .........update
Stomach Cancer and Seconday Peritoneal Cancer
No longer platinum sensitive
No good news
