6 week oncologist appointment

[enagogo]

Hello everyone. I am taking tamoxifen but I'm not sure its working as im getting pains in my lungs and a little stomach discomfort. Im seeing my oncologist on Friday to see how things are going after 6 weeks of taking the medication. Will be getting another scan a few weeks later to see if the tumours have shrunk. I know there are other treatments out there but I wonder how long it will be before this new cell vaccination comes to fruition! My oncologist is going to start me on taxol/carbo combination again if tamoxifen doesnt work though im not too sure about the taxol again as it is such an aggressive treatment. Anyone know if you have any input into your treatment options

[Hidden]

Hi,

surely most oncologists work with the patient to give them the best treatment for their particular problems, but if you are not happy with what they suggest you shoud say so. Taxol can have side effects that can be long term, so I'm sure your oncologist would listen if you told him your concerns. Carboplatin is the strongest drug of the combination, so you should be able to have it on its own . Don't e afraid to voice your worries.

Good luck

Viv

[enagogo]

Viv,

Thanks for your refply. I didnt know carboplatin was the stronger of the two and I as far as I am aware I didnt have any nasty side effects from it last time around. I have heard of people receiving just the carboplatin with good results so I would be more than happy to go down that route. Last time I saw my oncologist he mentioned the taxol/carbo combination and I just wondered whether there might be any leeway on this (I know Im thinking far ahead but this is all very knew to me).

[Lily-Anne]

My Oncologist told me 75% of the work is done with the Carbo and 5% with Taxol, I chose not to have Taxol and my Oncologist said that she didn't have a problem with that, as it is very toxic.

Hope that helps

LA

[Hidden]

A combination chemo is given because it usually works better than a single agent, the different drugs kill cancer in a different way, thus giving you the best chance, having had the combination Carbo/Taxol twice now, I don't regret having it again for a recurrence as I am now in remission for a second time, and I feel the regime was a small price to pay for remission, but it is of course your choice and you will eed to discuss this fiurther with your oncologist. Best wishes love x G x

[Hidden]

I am ultimately with Gwyn here. My own feeling was to take advice, though as it was first line after stage 3c diagnosis I was probably a bit shell-shocked and not in a state of mind to do more than do what I was told. I reacted with full toxic shock to taxol the first time, but the doc was adamant it was still better to have it, with massive antihistamine loading, than leave it out, and I am glad I did.

My view on taxol as I got to understand the roles the two play was that if it gives a boost to the carboplatin, then I wanted that boost - the maximum effectiveness combo would always be my choice. Yes, side effects are pretty horrid but in the grand scheme of things should not be the thing around which such a critical decision rests, yet it often is - people stress about hair loss, which just isn't the main issue. The problem is cancer. Really, I would focus on that and weigh up the options carefully. Regretting not having a treatment versus regretting getting the side effects? No contest in my view.

Whichever way you go you'll be supported, by your family and friends and on here too.

Love

Sue xxx

[Whippit]

You've had excellent advice on here with many of the options available under the NHS. I'm of the same opinion as Sue in that I'd trust my specialist but I'm aware mine can only prescribe within the constraints of my local NHS and within the trials in which my local cancer centre participates. Unfortunately my cancer centre has only one trial for Ovarian Cancer which isn't suitable for me. It's therefore an attractive option to seek a second opinion from another hospital running a trial that might offer me alternative treatments.

You mentioned the new T cell treatment. It is being trialled in a few places round the world. USA, Dubai and Switzerland are locations I've heard about but I don't image treatments at those places are within my budget. It did occur to me that if I had the means I'd take myself off to one of them but as they are still at a trial stage so there's no guarantee yet how effective they'd be for the long term.

It still gives me hope that research is published and shared so we are all indirectly benefitting from new ideas and discoveries across the world. That for me is a reason to rejoice.

I'm keeping my fingers crossed for you that the results work out well for you. Keep in touch and let us know how you get on.

Love Annie xxx

[Hidden]

CVax - one of many dendritic cell vaccines o n trial at the moment - is currently in a multinational phase 3 trial. If it's successful it will be on the market in around 4 - 5 years time. CVax is so far as I know the most advanced of the many vaccines in trials. It costs $100,000 for a course so who knows what NICE will say?

Mabe we should all start saving.

One caveat - from early trials of CVax and other vaccines - whilst all have shown promising results in some women, others do not benefit.

Can I ask, why are you on tamoxifen? It's just that usually several courses of chemo are tried first. Is your cancer hormone receptive?

As for taxol, there is controversy as to whether it has a benefit in adjuvant and neo adjuvant chemo. But according to my oncologist there are clear advantages to using taxol in second line chemo. He advises that dose dense is 'the only' way to administer it.

You can decide whether or not you want taxol or some other treatment. You should have significant input into your treatment.

Hope this helps Cx.

[AnnieMae]

I had taxol/carbo for first 2 cycles and reacted to taxol. Then had carbo and had very slight reaction to that on 3rd cycle. Had surgery at this point and assumed I would them be having 3 more carbo treatments. However, I had to fight to get them because they were worried about reactions I'd had. Only agreed under strict monitoring conditions on the main ward with extra antihistamines and steroids and everything slowed right down. It worked and I had the last 2 carbo treatments on the day ward without problems.

You have to listen to your Doctors as they have your safety in mind. If they had refused my treatment because it was extremely dangerous and there wasn't a way round it I'd have had to accept it. I had read up that it was possible to slow the treatment etc and I was lucky my Doctor agreed to try it.

Good to hear that Carbo is the stronger drug of the 2. I knew it was the taxol that made my hair drop out but was willing to try the double dose to zap the cancer. Hair loss was the least of my worries at the time!

Good luck with next treatment.

Annette xxx

[enagogo in reply to AnnieMae]

Thank you for all your replies and I will certainly let you know how things go with my treatment. The reason I was given tamoxifen was because my tumours were small and my oncologist wanted to see if my tumours would stabilise, or even better, disappear! It was also to lengthen the time between my 1st and 2nd line treatments (of carbo/taxol) in order to maximuse the benefit.

I was very grateful for my last remission though shocked at how short it was. I might get a similar if not longer remission with another drug comb and of course I would have taxol to fall back on if absolutely necessary. I think its about quality of life, for me anyway. Dont get me wrong if my first line treatment gave me even a years remission I would have no hesitation in taking taxol right now but mine was only about 4 monthsx

[poleglass in reply to enagogo]

if its any help .I had 2 sets of chemo with carbo plus taxol. After the 2nd. set my cancer returned within 4myths. My oncologist suggested 18 single taxol treatments for the 3rd. line chemo and I went for it. It is nearly 8mths. now from my last chemo and that's twice as long as I got the last time. Also my ca125 has risen by just 15 where as the last time it was up by over 70. The weekly taxol has worked for me bar the hair loss and neuropathy ,I coped well although my feet never recovered but I feel it is a small price to pay in the overall picture of things. una x

[Hidden]

My mum has just been told she needs to have carbo/taxol again (3rd cycle). Tried tamoxifen but it didn't work and we could see the lumps on her neck growing.

Has anyone favoured natural medicines instead of alopathic? My father has been looking at the Hippocrates centre in America.

[drdu in reply to Hidden]

I personally wouldn't go down that route. Taxol is a natural medicine incidentally, in that it is made from a type of pine tree grown on the west coast of America, I believe. I would stick with what is scientifically proven. There are a lot of people out there who want to make money from vulnerable people with cancer. The cancer research uk website has looked into alternative treatments and gives a scientific opinion on them. I am a retired GP, and would stick to conventional treatments with scientifically proven benefits. Any other treatment should be complementary to conventional medicine, not instead of it in my view.

Eileen xx

[drdu]

Good luck, enagogo, with your treatment. I would think that your oncologist will give you the best advice - but voice your worries, and discuss it all with him/her.

Love,

Eileen xx