Hello everyone,
Was wondering if any body had had a long remission following 2nd and subsequent recurrences?
Also how did you find 2nd line chemo? Was it harder than the first or did your past experience make it easier?
Any stories or advice very gratefully recieved
Xxx
Hello Lisarm5. Not sure if my reply answers your query.
I originally had 19 months before 1st remission, & usual chemo (carbo & Taxol) but with Avastin added in, and on that drug I stayed. It was 17 months before remission and again same drugs used. Still on Avastin.
Anyway - the 1st time I had treatment, I really didn't know what to expect, so except for tiredness & constipation - managed. For 2nd & 3rd line - it was the same side-effects but the latter side effect was worse and had to be hospitalised twice.
The only thing is that - knowing the side effects, I usually got meals prepared before each session so that I wouldn't have to cook - and knew it was important to eat.
Fortunately, my skin was not affected and was able to continue using my usual creams & make-up.
Planned my days & weeks so that was able to get out nearly every day for a walk or exercise.
As I gather you are facing treatment again, all I can do is send you best wishes AND remember, we all react differently - so if you are unwell - do tell your doctor.
Regards, Daisies
My first recurrence was in 2010 well diagnosed in 2010 but was complaining for a bit before diagnosis so that was about two and half years after treatment. My second recurrence was small and I got away with radiotheraphy. My next chemo regime was in 2013 finished in Feb 2014. I had Gemzar and Avastin. So far I have had stable disease now for a year remaining on the Avastin for the moment. I am due a scan in April and feel well enough apart from sinus issues which are due to Avastin or made worse by Avastin. My second line chemo wasnt too hard, it was Gem and Taxol, my hair thinned and my main problem was constipation also. So used movicol or lactol and prunes. I eat milled flaxseed from Aldi and I juice just once a day that is quite enough.
I'm on caelyx last of six next week . Iv found it not much bother though been drained twice . Looking pregnant again . Good to keep the hair and you would nit know I had cancer I except the swollen tummy good luck .i only had nine months remission first Clemo .
I will read the responses with interest. I know of one lady who got a longer remission from 2nd line than she did from 1st. I'm on watch and wait and only got 8 months remission from 1st line but now some 15 months from completion of 1st line a nd still haven't commenced 2nd line. Ann xo
Hi Anne,
How do you cope with watch and wait? I've read a lot about some oncologists preferring to wait until you have symptons etc before they commence 2nd line treatment. I would go mad I think if they suggested I do that, imagining it spreading and getting bigger.
Do you mind me asking how you coped with the news that it had recurred? I am finding it more difficult thus time than at my initial diagnosis , I can't stop crying and thinking all sorts of things. I so don't want to have chemo again but I know there's no choice. I wish I could be strong and just have a get on with it attitude
Best wishes
Lisa x
Oh Lisa have a hug this is a tough disease. I have low grade so feel I am permanently on watch and wait. I had 2nd line treatment two years after completing first line. Second line was quite tough mentally and physically partly because we lost quite a few members around the time I started treatment which made me feel sad. Sometimes I think it's the never endingness of this Cancer and the continual rounds of treatment that get me down. I finished second line last year and 6 weeks ago I started letrozole my CA125 has been on the increase for a while and CT scan shows slight but definite progression but I need to give the letrozole another 6 weeks.
Hi Lisa. I don't mind you asking at all. Initially I was devastated. I was so disappointed that I'd only got 8 months progression free time. I cried a lot and it broke my heart having to tell my family. After a few weeks, maybe about 3/4, it started to get easier. The oncologist advised me not to ask for my CA125 results as they would only be going one way and I took her advice. I was scanned again in November and last scan was yesterday, just have to wait for results now.
I'm dreading chemo starting as I suffered quite badly with pains in my legs, mouth ulcers and a bowel blockage first time around. I was left with the leg pains too. I would hate for them to get bad again and be worse than they are now at the end of treatment.
Back in Sept when I was told it was back, my aim was to get to a year from chemo ending, (Dec). I passed that and my next aim was to complete another 3 months, well I'm halfway through that third month now and waiting results of scan. I have recently been learning how to crochet (via YouTube) and try to get out for a walk when the weather is good. I basically have tried to put it to the back of my mind, I have decided I will face the chemo when the time comes, no point worrying about it now! I am actually a bit of as control freak lol so knowing I have this growing inside me is frightening, that's why I don't really like to think about it too much.
We are all different though and we must do what is right for us. My oncologist said to me back in Sept, we are happy to watch and wait, the tumours are small and we would prefer you to have good quality of life. As you are not feeling unwell and are not having any symptoms, we do not want to make you ill by starting treatment straight away. Research has shown that it makes no difference to the outcome by delaying treatment for a while.
Have you thought about getting some counseling? It might help.
Take care. Ann xo
How you doing at mo xx
Hi jools53, I'm on watch and wait again since August 16 when second line chemo finished. Unfortunately it didn't clear the cancer but my bloods went back to normal levels. It cleared 6 of the 11 tumours, the 5 that were left had all greatly reduced in size. I go for results of latest CT scan on Tuesday. I hope to remain ion watch and wait as I have a holiday to New York booked for 21 August! You know what its like though, the old anxiety is creeping in this week! Hope you are well. Ann xx
Just going on gemzar and carbo , lots of nodules in abdomen ! Just hope it can work am devastated trying so hard not to break! Wish someone or group was close to get together etc live in Kent xx
Why don't you do a post to ask if anybody lives in Kent and see how you get on? Good luck with treatment. Ann xx
Hi, if 3 years counts as a long remission? My oncologist suggested it was. I'm now mid 2nd line chemo, just had my mid treatment scan and check up and been passed to continue onto the next 3.
Facing this 2nd line chemo was not exactly tough (what else was I to do?) but not easy either. I knew what to expect, more or less, and that gave me pause. But needs must, so loins girded etc. I'm on a different combination this round, so a slight variation in side effects, plus instead of 1 in every 3 weeks as previously, it's 1 in every 4, so the 2nd line is over a longer period, which is daunting. First line was Paclitaxol & carboplatin, this time I'm on Caelyx and carboplatin. I'm not quite taking it in my stride but so far coping better than I was told to expect - they gave me such dire warnings about the side effects, I was quite worried. But they have to make sure you're aware of the most worrying side effects as they are concerned about sepsis. That may yet happen of course. So I can't compare like with like. I feel nauseous but the antisickness meds just about mask that - they are strict about how many to take as they've discovered these meds can affect one's heart. So I have to guess when I'm likely to feel nauseous in order to preempt the sensation - of course by the time you feel it, they don't work as well. I get mouth ulcers, but they last a day or maybe two, and I rinse with bicarb of soda, which helps. The chemo got rid of my frozen shoulder practically overnight - that was a plus. And there's the usual bad taste, lasts about a week to 10 days. Steroids cause flushing and make it difficult to focus on the TV or when reading and I feel a bit zombified for the first 5-8 days - I just rest as much as I can and drink loads. I also go out for gentle walks, I was told to take it easy but I need to get some exercise! I admit that during the first 5 days or so, I feel I can't do it, that I want to stop as I feel so awful, but I know that this passes, so I grit my teeth and wait it out. It does get better. Hope this helps. Good luck xx
Hi 4.5 years first remission, (Carbo, Taxol, Avastin) 18 months second (Carbo - switched to cisplatin half way through as I had a reaction/ gemcitibine) , currently in third (cisplatin) remission of 19.5 months and just had scan results of no evidence of disease and I am on Solo1 trial for a parp inhibitor as I have the BRAC2 gene. Not sure how helpful that information is. I have to say I think I have a bad memory because to me each Chemo is like when you give birth. As soon as it's over you forget how bad it was lol or maybe I choose to forget. Either way get through it I did......and I feel great at the moment, better than I have in a long time. I wish you well xxx
Think my 2nd line chemo was easier to cope with on the whole than 1st, though I did get fed up by the end.
Di
Hi - Got 18 months from end of first chemo and currently on 2nd line (2 to go!). My hospital don't do CA125 or scan unless you have symptoms which is all very well and I did 'buy' into their reasons why. However whilst visiting my GP to check if my gallbladder was causing problems she ordered bloods and I asked for the CA125. Guess what - it had shot up to over 1000! Next thing I get a call from my Onc and here I am on chemo again. No symptoms when first diagnosed and none for recurrence.
I struggled with 4th cycle on this course of treatment - really knocked me for 6 and I felt ill and didn't bounce back as well. Really not looking forward to this weeks treatment but it's gotta be done. Half way scan showed it was working so hopefully will do the trick. I chose to only have carbol (can't take taxol). Could have had carbol/gem/avastin but thought I'd leave that to fall back on if needed.
Sorry to go on but wanted to get across how we don't always get symptoms.
Love
Annette xxx
I'm starting a second recurrence - CA125 slowly rising and I will have a CT scan soon. I'm a year from second line chemo. I had two and a half years remission after first line. The second chemo wasn't nearly so bad but I did feel very down. I got into thinking this was all my life was going to be but then finished 2nd line in March 2014 and had a wonderful summer so I feel more positive about having chemo again. Whether I'l stay with being positive part way through remains to be seen. I've heard of people having longer remissions after 2nd line than 1st so we're all different. I hope yours goes well.
Lesley
Hi I was diagnosed nov 2011 I had a reoccurrence within 7 months of finishing 1st line chemo. The good news is I have been stable for 20months since second line chemo. Who knows why, I have improved eating habits and take a cocktail of vitamins.
I was determined to do better on my second line chemo, eat better exercise more, try and stay more active and enjoy live. It didn't pan out. On my first chemo got flee it's in arm and reaction to antibiotics. I struggled with second line more had a lot more problems with bloods, playlets red and white cells, most of all aches and fatigue. I did control bowels and sickness better though. I must admit at end of second line I vowed never again, but time has changed my mind.
Hope this makes you feel less alone.
Sx
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