Hi everyone
I have recently been diagnosed with early stage ovarian cancer. I had an operation to remove my right ovary 4 weeks ago and am due to start chemo in 2 weeks time. I am absolutely scared stiff. I will be on 2 different chemos, cant remember the names exactly but one is carboplatin i think and one is picatixle. Has anyone else had these??? Im so nervous im not sleeping x
Hi there Sammy... the good news is that you have early stage so that's a good point to focus on through the months to come. It looks like you're on a kind of carboplatin and Paclitaxel (Taxol) combination (though friends here will correct me if I'm wrong). It's not easy having chemo so I won't dismiss your concerns at all. Some people, however, have found it much easier to tolerate than others and the worst side effects are managed well with the drugs that you'll get so it's a big comfort. The thing that got me through was having a trip out every three weeks just before my next round. Take good care and big hugs are sent your way. x
Hello,
I found that research into the drugs being used helped me in two ways: it made me more knowledgeable about the treatments and their uses, and it made me feel less victimised by the whole 'having cancer' experience.
Having done my research (and your oncologist should be discussing the treatments with you, and giving you options), I decided to refuse 'taxol' (the drug I was offered in combination with 'carboplatin'). My oncologist was a bit huffy about a patient questioning the normal 'oh, thank you doctor' response, but then admitted that the carbo did 90% of the good with 10% of the damage, and the taxol 10 % good, 90% damage. He also said we'd have the taxol in reserve in the event of recurrence.
The process of deciding all this also made me feel that I had a right to decide my own treatment, and not to be railroaded by the usual treatment process.
I am not saying you should make the same decisions - just that you have a right to choose and to feel listened to, and that fear comes from powerlessness and lack of knowledge.
By the way, I had late stage, advanced, aggressive carcinosarcoma, and have been in remission for 4 years soon.
Very best wishes with your journey. May it rid you of cancer completely.
Isadora.
Dear Sammy
I'm glad you've found us as you'll get lots of support from this forum.
I think part of the worry process is just going through the shock of diagnosis, and surgery and this is followed closely by chemotherapy. Have the hospital given you an opportunity to visit the chemotherapy ward? It seems frightening because none of us have actually seen it. When you go you'll find it's all very normal and mundane.
I was terrified too about having chemotherapy. I think it's quite natural. I'm sure you'll have the same good treatment as I did with a nurse spending plenty of time with you to explain exactly what is going on, and how the chemotherapy will work.
I think it's worth getting in touch with Ovacome on their help line to go through the process. They will be really reassuring and they will have the time and experience to reassure you about it all. You do have a patient's choice about this but probably most people go along with the advice of the oncologist to have the gold standard of chemotherapy for Ovarian Cancer which is Paclitaxol and Carbo-Platin. I should have had both but there was an admin blunder and I just had Carbo-Platin.
There can be side-effects. Not everyone has them and most can be managed with the help of the oncology team. I really felt well throughout except a bit of tiredness. Please don't worry overmuch. You have been lucky to have caught this at a stage when your treatment can look for a complete cure. It's worth a little investment in chemotherapy to maximise the chance of this.
Please keep posting and we'll do our best to reassure you.
Love Annie xxx
Dear Sammy
I can imagine you're just reeling from the whole experience of diagnosis, surgery and now the prospect of chemo. As the others have said, the anticipation of chemo and not knowing what it will be like is probably the worst part. You'll be surprised at how quickly the hospital visits become routine.
I also had early stage OC and was given carboplatin only but practices do vary. Maybe your oncologist could explain a bit more about his/her reasoning. Either way, they will keep a close eye on you to make sure the dose is at a level where the bad effects are kept to a minimum.
I would advise you not to Google too much for info. Stick to reliable sites such as Ovacome, Macmillan and Cancer Research UK. And most of all, take heart from the early diagnosis which gives you a great chance and keep coming back here where you'll get plenty of support.
All good wishes
Linda
Hi Sammy,
It is good that you've caught it early, I can understand your concern in having chemo, I have had the combination carbo/taxol chemo twice now, and although it is not a walk in the park it is something you will get through, I see by your profile that you are young and have had only one ovary removed, I would imagine that as you have an ovary still remaining the oncologist is giving you the best shot at chemo to try to insure that your other ovary remains healthy as both chemo's work in a different way,so it has been shown that there is an advantage in having the combined chemo.
Best wishes love x G x
Thankyou everyone.....It is great to have the support from people who have actually been through yhe same thing. What a fantastic site this is, you are all amazing giving your experiences and time to benefit others, thanks so so much xxxxx Sammy xxxxx
Just remember Sammy the majority of us on here have been through chemo and at times it's not easy but remember it is killing the cancer and if it gets you down write and tell us and we will share it with you. I am due to have my 6th cycle of chemo at the beginning of April so I am currently in my 'best' time and making the most of it. Just go with the flow and do whatever it takes to get through it and you will come out the other side and have some 'good' time before your next cycle.
Good luck
Annette xxx
Hi again Sammy, like Isadora, I had carboplatin on its own so that I had Taxol in reserve. I didn't want to lose my hair and my oncologist said that it did only 10% of the work as a kind of boost. I did have some thinning though. In the end, I had a partial response which I was disappointed about but this is in fact, a good outcome because my cancer is resistant to platinum. I'm not saying this is the course for you, but it might be something you could discuss with your doctor. Some of the women who had the treatment whilst I was at the chemo ward did have Taxol and wore a cap so that hair loss was minimised. They seemed to think it helped. x x
Hi sammy
I am so sorry that you are going through this, 39 is so young.
I am not surprised that you are sacred, you have had such a massive shock , then pretty major surgery and are now faciing chemo. I do hope that you have good personal support. Do you not have an oncology specialist nurse ? If not could you ask to be assigned one ? Your GP should be able to advise you about this. The trouble when being diagnosed so young is that you may have very little experience of how the system works, so do try to be your own advocate . I was 48 when I was diagnosed with a borderline tumour. Thankfully none of my friends had ever been through something like this , so untill I sussed who to talk to I felt desperately alone.
Ruth, the Ovacome specialist nurse is wonderful, so do please consider giving her a call.
Early stage ovarian cancer has an extremely good prognosis, better than many other cancers and having chemo further improves this. So do try and hang in there. Major surgery takes up to a year to get fully over, try to surround yourself with people you love , get as much exercise as is safe for you and have a few treats. If your emotions are getting onto of you speak to your GP.
Take care and let us know how you get on
Love
Charlie xxx
Hi Sammy,
I haven`t been on here for a few days, so my comment is a little bit delayed I`m afraid + I haven`t had a chance to read through everyone elses comments, so please excuse me if I repeat what our friends have already said.
I had a choice whether I had the Paclitaxol or not, I was told that it could only offer an extra 3% better chance and it was this one that would make me lose my hair.
They told me that many ladies turn it down because they don`t want to lose their hair, But for me that extra 3% was so worth it and I know even though I was warned it may make some other underlying illnesses I have worse, I just told myself that "It might not".
I had 5 out of the 6 treatments of taxol as well as the full 6 treatments of carboplatin. I stopped the last treatment of taxol because it was causing neoropathy problems in my fingers, which were becoming a big problem for me. But not once do I regret not having it.
Its an individual choice and only one that you can make but sometimes we just need to go with our own heart and discuss it carefully with our oncologists, rather than listen to what anyone else has had done.
I think we are all scared of chemo - I was petrified, and thought it would be so much worse than it actually was. It wasn`t a walk in the park but one thing that kept me going was week 3 when I started to feel a lot better, I used this week (the one before my next round) to go out and socialize with friends, Like Tina B it was the one thing that helped me through.
It`s also amazing how quickly the time goes.
There are also some fabulous wig choices out there so remember to ask the chemo team to refer you to the wig lady so you can chose one from the NHS, they even trim it up for you as they usually need a bit of tweeking.
I have to say, I never once felt sick, I took the steoroids religously to prevent the sickness, I have an appetite like no other and really enjoyed my food. The only down side was weight gain, but now 2 years down the line I am trying to lose a bit.
If you do feel sick even though you take the anti-sickness drugs you must tell your chemo team and they will get some others out to you, there are more than one drug that do the trick or so I was told.
And remember if you are worried about anything at all, just message us and we are here for each other. Take Care, you`ll be fine - love from Tina xxxx
Hi Sammy
Echoing much of the above. Chemo is horrid but, for me, not as bad as I may have imagined. My biggest issue was problems with cannula insertion in the hand and my veins giving up giving blood - it dies feel as if you are a bit of a pincushion. But really: if its to attack cancer that's far more important! I also had no nausea at all through 6 cycles if carbo/taxol and then cisplatin/taxol on a trial after my surgery. I did get the nerve issues, loss of taste etc.
I'm out the other side after stage 3c, I hope. I lost weight on chemo but put it on after!
My view on the, choice thing is: of course you have every right. However, your research isn't the same as having an oncologists experienced view. I would think hard before refusing any aspect. Don't let something as meaningless in the grand scheme like hair loss be a factor in such a vital decision. The critical factors here are life vs possible death. That extra 10% could be the bit that makes a difference, so be very sure before you commit, is all. Regardless, I wish you all the best for what is a tough time. Do keep posting an we look forward to getting to know you
Love
Sue xxx
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