the bugger is back

[jennybutler]

Had results of ct scan yesturday and not good as its on the prowl again, offered carbo /taxol but not sure I want to go that way with all the side effects (2nd line) I had carboplatin 1st time and was ok with it, what are your experiences of this treatment and how long did you get before reared its ugly head again ? any answers much appreciated my head spinning on what to do for the best. love Jenny ps had 18months remission

[sweetpea]

Hi Jenny I had carbo/taxol as my first line treatment in July 2010. 6 courses every 3 weeks. I was very lucky and did not suffer many side effects, just the bone tiredness and the hunger from the steroids. I am still in remission with my next 3monthly checkup next month, I still feel ok, only get tired very quickly but heyho I can live with that. You will come to the decision that is right for you, but with my experience of this treatment, if I needed it or was offered it on recurrence I would jump at the chance and hope for another long remission. Hugs Ann

[jennybutler in reply to sweetpea]

thanks ann looking at hemp oil, good results, and no side effects. still not sure where to go such a huge decision,hardest part for me was telling my family only that makes me cry. hus returned Jenny

[Hidden]

Hi Jenny,

I am sorry your cancer is back..... After being in remission for two and a half years I had a recurrence and then had carb/ taxol again....I am now in remission again and have been in remission nine months..I went along with what they adviced...I am told that you only get taxol twice anyway...then they would try a different chemo for a third recurrence...I know that I had a long remission the first time...but I did have a recurrence and symptoms for over a year before my oncologist recognised this.. but not getting blood tests or scans just symptoms he tended to think I looked (and acted) well so ignored it..I think they do give you the best treatment that works for you.....I was very reluctant to turn diown a chemo and go for something else that might not be as successful regardless of side effects...I feel they know what they are doing (they're the experts) and of course they are the ones with all the knowledge and information they deal with it every day....best wishes whatever you decide...

You could give Ruth Payne a ring and ask her advice tel [phone] love x G x

[Hidden in reply to Hidden]

I just realised that you only had Carbo the first time... You will lose your hair with taxol but it is not as bad as you think xx

[jennybutler in reply to Hidden]

hi again spoke about wigs the other day, after reading about taxol seems very scary still deciding thanks for your response again love Jennyxx

[Hidden in reply to jennybutler]

Hi Jenny,

I feel (and it is only my view) that I owed it to my family to take the best treatment that they are offering.. then I will have no regrets later..(thinking if only I had done this or done that) it is not an easy decision to make... and is not an easier route to take.. no more easier than refusing it....so it isn't a case of one person being braver than another..

But for me it wasn't an issue...giving it the best shot was what I needed to do...and for me it would have been foolish to do otherwise...so no regrets... and given the time over I would do the same thing again even though I have lost my hair twice and the first time around I was still working (in full view of the public)...just my take on this though... best wishes love x G x

[jennybutler in reply to Hidden]

Thanks again G I do appreciate your comments and know they are true, but am looking at hemp oil, love Jennyxx

[hannakat in reply to Hidden]

Gwyn,

It has just been recently that I realized that this website is mostly European. I am at wonder why you are all so limited on options. I am in the US, have had OC for over 9 years now, was in remission for over 4, but re- occured 4 years ago. I have had just about everything possible, along with avastin and other "not yet approved" drugs. I have been cruising along beautifully on just straight taxol for over a year now. Yes, I had hair loss, but after about 6 months it started growing back in again, so did eyebrows and eyelashes. I now receive it every 14 days, was on 7 days, but doing well so expanding it out again. Are you ladies over there allowed to get whatever your Dr. wants to try? I have changed Drs. and Cancer clinics 3 times with great results. Do you have these options? We are not government run over here, it's all what your Dr. and you want to do. Can you do this? If so, See what Taxol can do for you. My CA 125 is holding in around 30, but I do have often CT scans,, x-rays, tests, etc. to watch.

My best to you with prayers,

Kathleen

[Hidden in reply to hannakat]

Dear Kathleen,

I don't think our options in the uk are that limited, and there are trials going on all the time to expand on this too.

The reason why I mentioned that I would only have taxol twice is because I have already had two courses of chemo (Carbo/Taxol) so the damage already done to my body is quite a lot and so they would be reluctant to give the same treatment for a third time, without trying something else, (although I might get it in the future) this post though is a year old...so I have since had a recurrence and have just finished Carbo/Caelyx and only today have had a scan to see how well it has worked, (I will get the result of the scan on the 23rd January) there are many people in the UK that have second or third opinions though... but our options might seem more limited than the US because we have the NHS that provide treatment free ( some people might go privately) but In the US your treatment I would think is limited by your budget (but I am not sure).

Because everyone is different though we have the treatment that is best for our individual Ovarian Cancer.. but we do have the option of seeing someone else if we find it would be beneficial, and if we are not happy with our oncologist.

Well done for having such a long remission thank you or your good wishes and more importantly your prayers.

Sending you my best wishes.

Love x G x

[hannakat in reply to Hidden]

So interesting to find out how other countries do it, so glad you do have the options you have. There is always the misunderstandings of each other's health care. Here, we do get private insurance, but our taxes to the government I believe are much lower. I ususally end up getting about 10% of my income going to taxes, sometimes less, so it generally leaves us quite a bit left for insurance. And if you were hurt or ill, and you have no money,it is law here that every hospital and health facility must give you full treatment. So, when you hear that people in US do not get health care that is absolutely untrue. You don't even have to be a citizen, you will be fully treated. Most of us just prefer to have private insurance, as we can call the shots then. Is yours much different? We don't really know the truth about other countries unless we live there. I also have had Carbo/taxol several times, but the taxol alone does me better. God bless. I'm not crazy about trials, as I have lost many friends. So just sticking to tried and true right now.

[hannakat in reply to Hidden]

So interesting to find out how other countries do it, so glad you do have the options you have. There is always the misunderstandings of each other's health care. Here, we do get private insurance, but our taxes to the government I believe are much lower. I ususally end up getting about 10% of my income going to taxes, sometimes less, so it generally leaves us quite a bit left for insurance. And if you were hurt or ill, and you have no money,it is law here that every hospital and health facility must give you full treatment. So, when you hear that people in US do not get health care that is absolutely untrue. You don't even have to be a citizen, you will be fully treated. Most of us just prefer to have private insurance, as we can call the shots then. Is yours much different? We don't really know the truth about other countries unless we live there. I also have had Carbo/taxol several times, but the taxol alone does me better. God bless. I'm not crazy about trials, as I have lost many friends. So just sticking to tried and true right now.

[jennybutler in reply to Hidden]

sounds like me look good so cnt have it see you in 3 months, but ive had no symptons will ring Ruth xxx

[Hidden]

Hi Jenny,

I had only Carbo the first time around, chose not to have the Taxol with the things that I found

out about it, but that was my choice.

I have had three years with my count just going up a bit until sept of last year then it decided

to climb a bit higher !! Im now 970 and they are still watching me, no symptoms, and the scans

only show Lymph Nodes in the tummy area.

My next app is Oct to see what they are going to do (if anything).

I have had no operations (yet) !!

Just fluid drained out three years ago.

You have done well with your remission.

Hope you can get your head around it, and make a choice that suits you.

luv trish x

[jennybutler]

thankyou still taking all in not keen on taxol either well done you saying no brave.xx

[Hidden]

Hi Jenny, I have had 5 cycles of carbo/taxol and have my last one on Oct 12th. The side effects for me haven't been too bad and I consider myself lucky. Have been bone weary, aching joints and some pins and needles to fingers and toes. I had some constipation after 2nd chemo but that is fine now and I have plenty of fruit plus Laxido.

I have to agree with Gwyn and if the occasion arises and I need to repeat this then I feel I would have to.

We are all different, and we have to make our own choices but at least here by asking the question and getting so many replies we hopefully can make a more informed choice.

Good luck with what ever you choose, and will be interested to see how the hemp works if that is what you choose

Best wishes

Chris xx.

[Hidden in reply to Hidden]

Hi Chris,

If you research "Hemp Oil" you would know that it's a con, all things that claim to be "miracle cures" for cancer and all diseases usually are...it is obvious to me that this would have been picked up a long time ago if it worked... It might ease symptoms but is not a cure....but clever marketing is a problem ...I hate to say it but another scam to make money on the vulnerable people who are ill...please don't go there love x G x

[Helen1]

Hi Jenny,

I am on my third line treatment,diagnosed & started initial treatment march 2011. I had vey little remission time.

Currently I am having weekly taxol & all is going well,I work full time but do get tired,minimal side effects except I am going to loose the hair again,3rd time for that aswell.

Only you can make the decision ,but for me as long as they keep giving me drugs, I will keep taking them. I see my disease as a chronic illness that will probably require regular chemo to keep it under control.

Cancer has changed my life but not taken it over,I very much get on with living & hope to stay that way.

If you are unsure maybe you should talk to your clinical nurse specialist or get a second opinion. What are your options?

Best of luck,will be thinking of you.

Helen

[angelina]

Hi Jenny,

GO FOR IT - Hope you dont mind my opinion but I do think you should listen to

the advice your oncologist gives you. I was very reluctant to start carbo/taxol but

my nieces and nephews and inlaws pushed me to do it - whats the outcome if

you dont go for it. I cant lie and say it was easy for me - I did have terrible pain

in my legs and feet but there are a few medications the oncologist tries you on

Eventually I was put on GABAPENTIN capsules and they worked a treat. I

didn't have any sickness - just felt a little sickly and took the steroids for that.

My hair fell out about two weeks after starting chemo - it was a shock even though

I knew it would happen....but you have lovely wigs to choose from and actually

you do get use to not having to style your hair (Wash and blow dry etc.) i'm not

looking forward to doing all that again once my hair returns.

Hope this is of some help to you.

Lots of love and hugs (((x)))

Angie x

[suzannehadenough]

Hi Jenny,

I too only had carbo.. I was offered carbo taxol but i did decide against it because i wanted to carry on working. I wasnt to ill with the carbo but i did find the whole thing traumatic. I have told my self that if i get a recurrence im not going down the chemo route. Just because i know i would have to have carbo/taxol and it scares me to death it really does.. But even though i have said this to myself over and over again I know that for the love of my family i would have to go through with it. I have to say that i agree with Gwyn the hemp oil will not be a cure. I tried to explain this a few weeks ago when we were getting messages from un welcomed people on this site trying to sell us a cure for cancer.. If the cure for cancer was as easy as something herbal then we would all know about it and we would all cure ourselves.. As Gwyn says it may stave off some of your symptoms and make you feel slightly better but it will not cure you.. Please please dont put all your apples in this basket i beg you.. Speak to your oncologist and find out the facts before you make any decision.

I am so sorry that you find your self in this position. I wish you all the luck in the world in finding the right path for you.

Please stay intouch and let us know where you go from here.

lots of love

suzanne. xxxx

[nandi]

I so agree with Suzanne about Hemp/ You had a good response with carbo first time around, I would think a chemo with carbo would be good for you. If you are against Taxol there are other chemos to go with it. Certainly worth talking over with your doctor.

Best wishes

[Natalie1022 in reply to nandi]

Hey i had chemo taxotere and fec it was gruelling and im not going to lie losing my bra length thick blonde hair was traumatising but its gone , but im alive , i had breast cancer and lymph node in my armpit so i had no choice chemo or death? Simple as that , im a nurse so i have lots of questions i want to know but what i can say all these wonderful claims about complimentary medicines and alternative medicines may be fine for minor ailments but hemp oil was at the beauty show claimig to cure Exczema so what im saying is these companies are praying on our insecurities with clever marketing , i was at conference yesterday and Queen elizabeth hospital has got new pioneering less invasive radiotherapy machines cyboknife absolutely amazing think hard its your choice but give yourself the best option for you and your family if hemp oil could cure then surely we would have the cure and noone would suffer very clever marketing speak with the oncologist as he/she knows best x

[jennybutler]

Thankyou all so much for the encouragent, as you all know not easy to decide what to do,keeping my options open for now, family all want me to have chemo, so being pushed that way but may opt. for carboplatin only any one else done that? Love and Hugs to you all Jenny xxx

[Hidden in reply to jennybutler]

Hi Jenny,

It seems to me that as you were on "Carbo only" the first time they are offering "Carbo/Taxol" now.. as a better option.. don't forget it is now a recurrence and a different ball game...whatever anyone else has done or not done shouldn't make a difference to your own decision.. as everyone is different even the cancer where it returns etc..you should really be discussing the issues you have..with your oncologist or at the very least with your specialist nurse..you should be telling them your fears and asking them all the options.. they will advice you the best way forward...you are trying to make decisions...when you are the patient..they are there to save or prolong your life...if this worries you..and don't feel easy with your oncologist...then you could ask for a second opinion...I feel sad that you have these decisions to make.. as when I had a recurrence my oncologist told me what he was going to do...and I am so grateful that I never had to make the decision myself...this doesn't mean I haven't got a brain.. but I accept that he is the expert and I am not..and my gut feeling paid off sending you my best wishes love x G x

[jennybutler in reply to Hidden]

Thanks Gwyn you are so excellent responding so many to assure me and others my onc. has told me what they want to do, and will take advice from them but do need to search other avenues love and hugs Jennyxxx

[Hidden in reply to jennybutler]

Don't get me wrong...of course I questioned his decisions...a friend of mine even changed to a different Oncologist (she had the same as me) but she is no longer with us..I feel people say... we know what's best for ourselves.... but how can we know?... We are not oncologist I just made sure that what he was offering was the best way forward ...and I came to the conclusion it was.....my friend on the other hand kept refusing her different treatments..(the oncologists had their hands tied)....she was convinced that I should change too...but I feel so glad I stuck with it...love x G x

[jennybutler]

yes i understand why you are happy treatment recieved and sorry your friend did her own thing but even ovarian cancers are different in many women and your friend may not have had same strain as you,still in limbo talk again soon Jenny will let you know what i decide x

[Cara2]

Hi Jenny

I'm back on carbo/taxol weekly and after 4 am doing ok - feeling alot better.

Side effect minimal and hair just thinner but there.

Was on Topotecen which started out ok but then stopped so after 4 months of that we switched to the Carbo/taxol.

SO - for my part I'd go for weekly - easier than 3 weekly which I had first.

Good luck.

Cara

[jennybutler]

WOW thats really interesting get it over with quickly and hair back sooner than 3 weekly sessions i have been offered, going to ask my onc, if i can do that? did you ask or was it offered what about your blood tests did they go back to normal quickly? thanks love Jenny

[Becalm]

Dear Jenny

I just want to add to what others have said a comment about the management of the range of chemos now available to us and the juggling of options by the oncologists.

.I have had carbo/taxol for three lines of chemo.( three years remission the first time and 6 and 9 minths respectively on the other two) and other types of chemo. since and accept that mine is a chronic condition controlled by chemo. I've come to realise that the oncologists are choosing the chemo.options in order to ensure I get the best possible long term result from what is available. From this point of view I would be reluctant to second guess their judgement - after all, my knowledge of the chemo. is very limited. This does not mean that one should not discuss and seek out information and of course everyone must make their own decision but it might be worthwhile asking what the longterm significance wiould be of refusing carbo/taxol now. After two years off the platinum based drugs I am now back on cisplatin as I understand platinum based drugs regain effectiveness after a period without them.

I hope this rather muddled thought willbe useful to you.I know how devastating the news of recurrence can be - lots of supportive thoughts in finding your way through it. - Bunty

[jennybutler in reply to Becalm]

Bunty thankyou I do appreciate your time in answering my dilema, there is a mine field of drugs etc. out there chemo. and alternatives I think I will do both was told by an onc. who will remain nameless that baking soda and pure maple syrup can kill cancer cells, but recommends I have chemo. as well. much love and good luck Jenny xx

[Hidden in reply to jennybutler]

Hi Jenny,

Are you sure he is an Oncologist? because after researching this..It is another one of those scams...isn't it odd what people say? I hope he is not the Oncologist that is treating you best wishes love x G x

[jennybutler in reply to Hidden]

no not my onc. but known to me.dont worry i will have carboplatin if all else fails but not taxol will keep in touch regards Jenny xxx

[Whippit]

Dear Jenny

How I feel for you. I've had 12 months' remission after 6 sessions of Carbo-Platin only. My CA125 is rising exponentially now and I'm getting some worrying symptoms so I'm guessing the honeymoon is over and I have to think of the next stage.

Now I was going to go along with the standard Carbo-Taxol route for my first line as I really wasn't given enough information to come to a decision as to whether this was best for me. For various reasons I started with Carbo-Platin which isn't too tiresome and when they came to add Taxol I was told there had been an admin cock-up so there were no Taxol places available. My oncologist said that I was doing well on Carbo-Platin alone so why bother with Taxol.

I'm pleased with that prescription. Taxol has a number of side-effects that affect ones quality of life and apparently only does 10% of the job. I understood from a lecture recently that once you're had carbo-platin it doesn't ever work as well again. For this reason I'm pleased I started with it but accept for a second-line that a combination of Carbo-Platin and Taxol is the best option as it's the gold standard for Ovarian Cancer. I'll be asking about the dose-dense weekly Taxol which has had good results in recent tests rather than Taxol every third week. When I'm faced with further remissions I'll need to look at other cocktails.

Now there's been talk on this thread about Flaxseed. It's not a cure but it's part of a philosophy that looks at diet and exercise to counter cancer. I can only say that my sister has suffered from 3 aggressive and incurable cancers over the last 40 years. She made a commitment to a diet and lifestyle she believed in and is at the age of 63 a picture of health. I'm not saying these things are a cure - but if you've got lucky genes they will certainly help. I've started the Budwig Regime as it makes me feel as though I'm going something positive to 're-programme the body'. It might well be mumbo-jumbo but for me it's worth trying. It's high in raw fruit and veg so just a sensible diet. The hempseed adds roughage - lots of it - but I'm happy with that as it's sort of cleansing and harmless.

At the end of the day you must do what you think is best for you - so long as it's not a crack-pot regime. Bugwig and Hay are generally good so I wouldn't knock them.

Wish I could offer more but hope this is helpful. I guess we're level pegging.

Loads of love xxx Annie

[jennybutler]

thanks Annie sorry your in same position as me, but I am doing so many alt. inc. frozen lemons will let you know how it all goes.Chemo ???? does not cure only holds back anyway thinking of you all no matter what you choose is right for you. love and hugs to all Jenny