I was diagnosed with Cancer in March and although we knew it was Cancer its still a shock to be told it. I have had 2 chemo cycles now and have my 3rd at the end of the month. I would love to chat about the chemo side affects to anyone..
I haven't been on here for quite a while, Mary has been doing so well for the past six months I just wanted to put the whole cancer thing behind us (I hope that doesn't sound selfish).
Well, unfortunately for Mary too it's back! She was in hospital for a week at the start of Jan with a serious kidney infection, turned out to be e-coli, and she hasn't been right since. We bought her oncology outpatient appointment forward to be on the safe side, they organised a CT scan which revealed a tumour pressing against her kidney, which was likely the cause of her infection.
So it's more chemo unfortunately. On the postive side the oncology team are very optomistic that she will respond well, as she did last time. She is not having Taxol this time because she still has neuropathy in her toes, so they will give her Gem/Carbo which means she will not lose her hair, and hopefully no surgery needed. Treatment starts on 1st March.
Obviously a big knock back for us, but of course a lot of you know exactly what that is like. The team seem so relaxed about it all, doesn't seem to be any urgency to start her treatment.
This tumour has possibly been there for a while, the hospital have not made regular CA125 checks, her appointments have just been a physical examination and questions about any symptoms. The rationelle behind this approach is that they have done big trials between two sets of women, measuring quality vs quantity of life and found that there is no advantage to prescribe treatment based on CA125 increases alone, but rather to wait until symptoms arise. The two sets of women had similar quantity of life, but those who were treated early sufferred a diminished quality of life due to chemo side effects.
I just wondered if your oncology teams followed this ideaology?
My best wishes to you all, I hope things go well for you.
It is so nice to have you back with us, I know what you mean about staying off the site and I don't think your selfish. You just want to try and live a normal life for as long as you can without the c word being in it. Anyway glad Mary got 6 months but sorry it is back again. It's funny because I managed 6 months and I to was on gem/carbo. Mine came back in the pelvis and then wrapped itself around the veins in my groin. as well. I also have a cystic mass that is growing. I had 5 gem/carbo but have not been feeling right in the bowel area. I had my scan results on Thursday and it's not working for me so I too start another chemo on the 1st March. I don't know which one I am going on as my Dr was Chinese and I couldn't really understand him. I will try to find out this week though. I will have to stay in overnight for mine and also take tablets as well.
I am not convinced about the CA125 tests as mine was 200 back in July and still is, so although the chemo hasn't worked I thought that it would have shot up. When I was diagnosed 2 years ago it was 3000. The gem/carbo is ok as well, you have a 1 hour bag and a half hour bag as well, then the 2nd week a half hour bag then a free week. Well that's the way they did it for me.
On another note ladies I received a lovely e-mail from Jackie and she is still having work done on the house. She hasn't got her broadband up and running yet but she said to say hi to everyone and will be back on site soon. Her CA125 has gone up as well so she recons more chemo for her ..... We all seem to start at the same time....
Well John & Mary keep smiling and all my love is with you both.
wow the page loaded!!! have managed to view your posts but not respond as Internet worse than dial up at the mo!
Welcome to the 2 new ladies, sorry you are in the same boat but glad u found us.
Nice to hear from our 2 men! sorry to hear the chemo is knocking you Tony and its a shame Mary didn't get longer, I only got 6 months from my first treatment but have had 14 months from the 'inferior' second! my onc also does not measure ca125 due to the study you mention, I was a tad fazed by it to start with but am now glad he does it that way, as the ca125 can rise for many reasons and he now recognises that my skin and/or muscles problems are my only cancer symptoms, its a system which works well for me though now he tries to jump in too soon lol
Well it looks like we are all off down the same road again except Dot (you keep hanging in there girl!) my onc wanted to start when I saw him in Jan but I told him I wouldn't survive it till the work was finished, don't think he believed me so had to make an appointment for 6 weeks which is the 4th March, it has managed to put a bomb up the builders ***** which is helpful lol looks like everything but the painting will be finished this week and I may then feel less stressed by it all, at least that's what I hope!!!! have found it far more difficult than be diagnosed with cancer - how stupid is that???? Am hoping to do as well with this bout of chemo as last time, 14 months was far more acceptable than 6 lol
am looking to change broadband providers which will hopefully improve my internet service and then I'll be back with you on a more regular basis but fear not you are always in my thoughts and i do usually manage to read the messages even if I can't load the reply page!.
Thank you all for your warm welcome back, it means a lot. And a warm welcome to the new ladies who have joined us on the forum.
Yes it does seem that we are somehow in sync a little bit at the moment. Not the best of news for everyone but on the positive side maybe we can be here more for each other.
This is a good forum for me, as I can discuss things here that I cannot really with friends and family, as I want to keep things as normal as possible with them, too much fuss does not help at all.
I hate seeing Mary like this, she hasn't felt right for nearly two months now. First time around she had no symptoms at all, apart from the ovarian cyst that was making her feel uncomfortable. I hope that the chemo will make her feel better and not worse.
Is this still ovarian cancer? how can it be? she has no ovaries!! Maybe it is because that's where it started.
Hello, John, thanks for your welcome. So sorry to hear about your wife, but think of some of the other ladies on here who have had good results second time around - so don't despair. (They give me great hope, I can tell you.) I think it can sometimes be much harder for our partners than for us - I know my partner is taking it badly, the more so because he is in poor health himself and can't go with me to appointments etc. and feels he is of no help, though of course he is. Fortunately his brother very kindly accompanies me to the worst meetings, so I am not without a "prop" at such times, but it's not the same as having my partner with me.
Re. your Mary's recurrence, apparently when another tumour appears anywhere in the body, if it is a breakaway from the original site it will retain the properties of that original site, so the medics can see from tests whether it's a secondary or a new cancer and will plan treatment accordingly. I learnt this because this is my own current position, and I shall find out this afternoon whether mine is ovarian or secondary from past breast ca., and hopefully have some appropriate treatment started at last! (Beginning to get a bit jittery now, as I always do before appointments!)
