Hi all.
I was told about six weeks ago by my consultant that my next line of treatment would be carbo and caelyx.
When I saw the Doctor this week he said it would be carbo and taxol again. He said caelyx is used when you're platinum resistant. Caelyx would be used alongside carbo though
Bit confused. Xx
Not surprised you're confused... I thought caelyx was often given WITH carboplatin -as I had it. Perhaps on its own for resistant?
I'm confused too as I'm carbo sensitive. That means yes I'd have the carbo but why not with caelyx as previously discussed ? Xxx
did you have a good response to the carbotaxol combo before? perhaps that's why he's changed his mind?
I did. I had an excellent response. Not that long a remission really . I guess though by the time I do start chemo it could have been a year. He said they'd keep the caelyx in reserve. Xxx
Well, it is reassuring to see them having a forward plan, I suppose....good luck with it. x
Thank you xxx
Definately confusing! I am platinum sensitive and had carbo caelyx for second line treatment. I wasn't offered taxol which I believe is more toxic? But I've read elsewhere that if you respond really well to the first line of therapy they tend to repeat it and keep others in reserve. And that seems to tie in with what others have already said above. I hate it when they tell you conflicting things though!! It is already hard enough to get ones head round all the different info and essentially learn a new language in double quick time .....
Good luck with whichever you go with x
Thank you Elizabeth.
It does get confusing and often information is conflicting.
I do t want the taxol carbo combination really as I'll lose my hair and it exhausted me last time and I want to be able to carry in working which a lot of ladies do in carbo caelyx.
Will see what happens. Xxxx
Suzanne, you could try the cold cap re taxol. It worked for me. Just a thought xxx
Hi guys, chemo and surgery are not the answers. Cancer will always come back in some other place.
Cancer cells are still present in your body
So what I doing now is going on juce and natural diet. Getting advise and set up plan with nutritionist how to bust up my immune system to fight cancer. Chemo will kill you in the end because it wipes out your fighter immune system . I know it's sound scarry but I said NO to toxic treatment
Hi June, I had a choice have chemo or die the cancer was every where. I changed my diet I started lots of different alternatives you name it I did it. I also took chemo but when off of chemo I carried on with all the other stuff but it keeps coming back.
My friend knew this lovely mother of 2. She had breast cancer but refused any treatment & did a nutritionist plan & lots a different alternatives. The hospital was almost begging her to take chemo but she believed she was doing the right thing. It wasn't working by the time she went back to the hospital they told her it was too late for treatment & she died 6 weeks later.
I am not against what you are doing but just becareful I wouldn't be here if it wasn't for chemo. Please take care Cindyxx
I agree Cindy. I'm all for taking supplements and a good healthy diet but as an added treatment- not in its own. Chemo zapped my cancer before. I don't think anything else would have. Xxx
Well said Cindy 😊 Xxx
Hi June,
I understand where you are coming from - I really upped the ante when I finished first line chemo and understood more about cancer and diet. Compared to what I ate before and what I eat now there is a massive improvement...but all the supplements and diet changes haven't stopped the cancer coming back.
I'll be starting second line chemo sometime soon because, whilst I will continue with my diet and lifestyle changes, I don't have any faith that those measures alone will knock the cancer on the head. You are very brave to be able to say no to chemo, and I hope your approach works well for you.
Vicki x
I had contacted nutritionist who deal with cancer patients and we are setting up a plan
Also I have MRI scan on Wednesday
I'm quite anti chemo however cancer manifests differently in each of us so it cannot be one size fits all. You may find your cells sleep naturally and it's not related to the changes you have made. I have been following some stage 4 OC women who have increased exercise and stopped chemo. I say following because although I have upped my exercise I'd never rule anything out. I just want to be sure I'm not sacrificing quality for quantity
Be informed rather than led
LA xx
Good luck with your plan June. I certainly think diet, exercise, stress relief, spirituality, supplements etc etc all help. However, they can also be a real hindrance and cause more anxiety and stress. In the last 4 years I have been macrobiotic, vegan, on the Budwig protocol and have now been looking at Ketogenic. In the end my cancer recurred v quickly despite everything, and when I am in pain, chemo will clear it in just one infusion. None of us likes chemo, and we all know what it does to our bodies and our immunity through experience. However, sometimes chemo and surgery are the only things keeping us alive. All the best with your healing journey, and remember to keep an open mind as healing comes in various guises.
S x
My heart sinks when I read this kind of message. I know there are books about people who get well as if by magic and juice etc but this is not reality as I see it in so many people who have our type of cancer. It's actually quite dangerous for you to say what you are saying, even though I'm sure you are doing it with the best of intentions. We all don't want to have chemo and if there seems a way out without it it might be tempting. The fact of the matter, though, is that the chemo and other drugs such as immunotherapy etc are what needs to be administered to give us a chance at more life. I for one don't like having second line chemo, but it is working and has reversed a constant upward trend in my CA125.
Don't take offence, I just felt I needed to say this.
Netti
Hi pls explain why do you think it'd dengerois?
Because by not having treatment such as chemo or an operation you may be letting your cancer grow.
Hi June,
My view is that by the time this awful disease has made its presence felt sheer through bad luck, genes, environment or whatever else unknown causes it the damage is done and diet alone is hopelessly inadequate to deal with it. A parallel would be my 87 year old mother who has smoked moderately all of her adult life (an awful habit imo!). I would love her to give up but it brings her pleasure and any damage has been done long ago and giving up now will not change that.
Surgery for cancer and/or other treatments have been successful for many, many people (myself included).
I wish you well in the path you have chosen and I can totally understand it. After my own brush with OC and after spending a morning dragging a 2 year old round south London looking for Hunza apricots I thought 'Sod the apricots; life's too short, however much I may have left'!' That was nearly 30 years ago.
Wishing you all the very best in your chosen journey.
Catherine X
June
This is the second time in two days that you have come on here peddling your anti chemo thoughts. I find them deeply upsetting and offensive. The majority of the women here have opted for surgery and chemo as they believe in medical science. Nutrition and exercise are good in combination with conventional treatment. Perhaps you have been influenced by one of the many anti chemo theorists who roam the internet . If so please rethink your ideas and stop googling. I wish you well in the future
I'm sorry but posts like this annoy the hell out of me. Diet and supplements will not cure or even control cancer. If they did, don't you think doctors would use them for treatment?? I had surgery and chemo and there is nothing wrong with my immune system.
I owe my life to the doctors and scientists who dedicate their lives to developing better and kinder cancer treatments.
The conventional treatments are the only hope we have. Chemotherapy may be toxic, but cancer cells are body cells gone wrong so it has to be to work.
Lou
I believe everyone makes their own decisions, I opted for chemo and surgery and have been Ned for 1 year and enjoying life.
If I recure I will go back on treatment to extend my life.
Ellsey
Hi Sazanne, that sounds a bit strange are you being seen by more than one doctor could you ask someone else if this is right? I am carbo sensitive too & have just finished Caelyx. It was my 3rd line. I can see why you are confused.
So far I haven't had any chemo repeated other than having carbo with my treatments.
Maybe you could ask the ladies if they have been offered the same chemo for their second line.
I hope you can sort this out please keep us up dated take care Cindyxx
Hi Cindy.
It is strange and confusing. I'm seeing yet another oncologist in a couple of weeks so will get the answers out of him or her. Will let you know.
I hope you are ok. Did you find caelyx quite doable? I want to be able to still go to work. Xxxx
Hi Suzanne, yes I did out of the others I have had this one was more doable. If you do go on it you will need mouth wash as you might suffer with mouth problems.
I am glad you will be seeing someone else because 2 heads are better than one. The fact you were being offered it then not seems a bit odd. I feel you need to make a list of questions for your next onc just so you are sure they know what they are doing. Good luck take care Cindyxx
Thank you Cindy. I'm certainly going to ask the next oncologist why the Doctor and the other oncologist have different ideas for treatment.
Thank you for your advice. Xxxxx
Hi Suzanne, thats great😊take care Cindyxx
HI Suzanne, As usual the ladies have given you some good advice, my history of Caelyx is I had it 3rd line on it's own 6 treatment the side effects were bad at first but my oncologist gave me steroids with each treatment, this was a great help I still manage to go to my part time job.
Now I'm just about to finished my 5th line treatment of carbo/Caelyx ( I'm platinum sensitive) with very good results 125 was up to 1300 after 4 treatments down to 106, still have 2 more blood test results to come.
This combo has been the easiest one for me very little side effects but you know we are all different in our response.
As the ladies have said your oncologist could be keeping this for future treatment.
This combo being my 5th line leaves me with not too many options when I finish my last treatment I will be going on Caelyx as a maintenance chemo.
I had been to see a prof at our largest woman hospital as a second opinion, as he was having good result with Caelyx as maintenance my oncologist took his advice it will be a low dose. I'm hoping it will keep it under control, I've just had my tumor testing done this may give me more options and who knows with the new drugs coming out we can only hope for the future.
Your second opinion is a good idea as oncologist do have different treatment plains I think it is a learning curve for them as well. Hope you get the advice to help you choose the right treatment ...keep well Lorraine 💙💙
I had Celyx yes it did reduce C 125 but it's. Back
HI June, Sorry Caelyx did not work for you this is the problem with this dreadful cancer, we can only keep on trying and hopefully find the right treatment for us, for myself i will keep on trying,
It's 3 years since being diagnosed and I do believe i would not be here if not for the chemo, I follow a good diet and exercise as much as I can but chocolate is my weakness.
I do fully respect your right to not have chemo if you choice, I hope your choice is right one for you, ..take care Lorraine xx
Hi Suzanne,
My original plan was for carbo/caelyx, although carbo/taxol was discussed as a possibility because by the time I start chemo it will be a year since I finished the last lot. My oncologist suggested holding caelyx back as, in her opinion, it is a good one to give if the recurrence is quite soon after finishing a course of chemo, so one for me to have in the future if necessary.
As it stands, I'm going to have carbo/gem + avastin (assuming my latest scan results show my bowel is still OK). I have private medical insurance which has opened the door to avastin for second line treatment as I didn't receive it after first line.
I think it is definitely worth speaking to the next doctor you see and agreeing what the combo should be. If you would prefer caelyx and can explain why you want it, they should respect your choice. Of course, if they have a good argument as to why carbo/taxol is a better option, you can be flexible and change your mind.
I hope you get some answers 🤞
Vicki x
Hi Vicki.
Thank you for your reply. The Doctor said something about holding caelyx in reserve. I'll have to ask the right questions when I see the next oncologist in a couple of weeks.
I had avastin first line but it was cancelled after 13 rounds as I had too much protein in my urine. Avastin is ok. No side effects.
Let us know how you get in. Thinking of you. Xx
Hi Vicky I was on private health care during first line treatment and was told by onc insurance would only pay for 12 infusions had 4 prior to surgery and 3 after.
Hugs Ellsey xx
Suzanne--I tried to google some answers for you and found they did a trial about this (I cannot figure out the results---maybe it is published elsewhere?) It seems the difference has to do with tolerance of the drug and if it is as effective. Since you tolerated Taxol so well, it is interesting they suggested Caelyx. Of course you will ask why...and hopefully get a logical response but if they are considered the same, and Caelyx can save your hair, I would consider that too. My only question at that point would be to ask (if you choose Caelyx) if you can have Taxol (or even Caelyx) at a later time if you need treatment again.
clinicaltrials.gov/ct2/show...
Hi
Aww. Thank you so much for googling that and finding out about it.
I will ask the oncologist about it. I will let you know as it's interesting to see how different doctors etc choose different treatments for people.
Thank you so much.
Hugs. Xxxx
Yes I think what maxjor has said is right. Hopefully this is nit a factor in your oncologists decision - but caelyx is a lot more expensive than taxol! Also if you'd prefer carbo caelyx you are entitled to have your opinion taken into account - it is your body after all and your life that will be affected.
I didn't lose my hair on carbo caelyx but I also didn't feel well enough to go to work . We are all so different it's very hard to predict how well a particular chemo will be tolerated.
Sending warm wishes x
Thank you Elizabeth for your advice.
Hopefully the next oncologist will be more clear. Xxx
Hi Suzanne, I am platinum sensitive and I'm having Carboplatin and Caelyx. Perhaps it depends what stage your cancer is - maybe? I'm stage IV and had the Carboplatin and Paclitaxol for my first line of treatment, which was very effective. Good Luck anyway, Suzanne, and hope you have a smooth and successful treatment. xxx
Hi
Thank you for your reply. I'm
Stage 3c. My first line treatment was very effective too. I'll see what the next consultant says. 👍🏻👍🏻Xxxx
Hi, I had carbo/taxol for first line got 20 months remission, had it again for first recurrence and also started self funding avastin . Currently still NED after 12 months. I was told as I had a good response first time they would use the same treatment regime for a first recurrence. I just decided to try and self fund the avastin .
Val. X
Hi Val.
Thank you for your reply. It seems to be split with people. Some having the same treatment and some having a different chemo.
I had the avastin. I hope you get on well with your treatment. Xxx
Hi, Liz here I was on taxol and cysplatin. Cysplatin was too strong sick, so switched to carboplatin it's a sister drug to cysplatin. I responded very well to platnim based chemotherapy. I did stomach wash chemo, aka. IP. Intreparatineal chemotherapy. I've been cancer free since April 2014. The IP chemo I'm crediting.
Hi Liz.
That's brilliant news about being cancer free since 2014. I've asked about the IP chemo as I've heard about long time survivors or women having long remission crediting the IP chemo treatment.
Hope you continue to have many many more years remission. Xxx
I've heard about this too with op. What did the dr say ?
Hi sweet.
I'm gonna start carbo caelyx as first line. As my body. Oft won't tolerate taxol. X
Hi Zena.
Aww. I hope you get on ok. I ve heard that just carbo alone can do the trick.
Let us know how it goes. Thinking of you. Xxx
Yes the nurse in the chemo suite said that is the big blaster and she must be right.
My ca125 has gone from 900-111 after two chemos.
She saw I was upset because I wasn't tolerating taxol.
Xx
Aww. Don't be upset. You're doing brilliantly. Carbo will do the trick.
I had to stop avastin as it was causing protein in my urine xxx
Thanks Hun we can only hope least my hair growing again. X
Youll be fine. Your CA125 is falling fast. 👍🏻
It's good to keep your hair. I'm dreading losing mine again. It's growing so well.
Xxxx
Yes your hairstyle is like mine used to be but I found a wig at dimples have a look online it's identical just more thicker x
Let's hope the ca doesn't rise as fast as it drops ... because I missed out on taxol. X
It won't. Your CA125 will keep falling. Xxxx
Don't worry, I couldn't handle cysplatin, made me terrible sick, my face got extremely hot, blistered even. Made it through 2 times then all the side effects. So they switched me to carboplatin. I did fine on that. Best wishes, Liz
Thank you Liz. I’m glad you’re doing ok. Xxx
Caleyx was mentioned to me when I went for my second opinion. She said it has good results but is harsh. It's often given with carbo. I've never had Taxol and my oncologist isn't keen to offer it. I stopped chemo because my levels were rising and am not sure what is next. I'm going to have the caleyx chat tomorrow so may know more then
My oncologist referred me to the site they use but can't copy/paste on phone will try and do it on laptop later
LA xx
Hi Lily.
Thank you for your message. It seems to be different for everyone. I hope your meeting goes well tomorrow and you get some answers. Xxx
Hi Suzanne
Anything I have read since I was diagnosed suggests that a woman with a long remission is platinum sensitive and the recommendation is to repeat the Carbo/ Taxol treatment. When I had a recurrence in my lymph nodes after 5years last year my oncologist refused to include the Taxol even though it was also recommended by a second opinion oncologist. He said it was too toxic even though I tolerated it well first time and did not have permanent neuropathy. Losing my hair was a small price to pay. I suspect it is age discrimination. Im not well up on Caelyx so can't comment on that. I suppose Suzanne what I'm trying to say is it is good that you are being offered a combination which I would have given anything to have been given last year. Good luck with the treatment and I hope you have a good discussion with your oncologist about the best way forward. Take care.
XXX
Hello Molly.
Thank you for your message. I'll speak to my consultant and see what he/she says and the reasons they give, I hope you are ok. Xxxx
I am just in between times Suzanne and waiting for an appointment with the lovely oncologist who I got a second opinion from last year . Just trying to keep ahead of the posse so to speak . I really want a heart to heart with her as to where I am at as my own oncologist seems to believe in keeping the patient ignorant !
I will be really interested in how you get on and what recommendations they make . I'm sure you have all your questions ready for them . Good luck💕
XXX
Thank you Molly. I'm told I will have treatment between 3-6 months or before if I get symptoms.
I hope you get on ok. Let us know how it goes. Xxxx
That is the standard approach Suzanne so be happy they are on them right track . We will certainly keep in touch and follow each other's progress. Take care and enjoy the rest of the weekend .
XXX
Thank you Molly. Yes, keep in touch. Take care. Xxxxx
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My companion had a decision have chemo or kick the bucket the tumor was all over. She changed her eating regimen. She began heaps of various choices and so on she did it. she additionally took chemo yet when off of chemo she went ahead with the various stuff however it continues returning. My companion knew this dazzling mother of 2. She had bosom growth yet declined any treatment and completed a nutritionist design and parts diverse choices. The healing facility was nearly imploring her to take chemo however she trusted she was making the best decision. It wasn't working when she backpedaled to the healing center they disclosed to her it was past the point of no return for treatment and she kicked the bucket a month and a half later.
Taxotere Versus Caelyx
Quick chemo response
Bloating while on chemo
