Henryfred

[Terrileeloughlin]

Hello everyone, I found out today that my CA125 is 16. This is after de-bulking surgery, only. Now I'm told I need a double dose of chemo, that doesn't respond to the tumors I had originally. I dont understand, has anyone else had a problem with this x

[bamboo89]

Let me just clarify - are you saying you've had some chemo but your cancer was not reduced by it, then you had surgery, and now they want to give you more of the same chemo? If that is the case, what reason do they give for wanting to give you two more lots of the same, ineffective chemotherapy?

[Terrileeloughlin in reply to bamboo89]

Hi, no, I haven't had any chemo, just the surgery 9 weeks ago, and when on oncol nurse told me my CA125, was 16, she then sounded a bit surprised, so until I go for my first session, I have questions to ask. X

[bamboo89 in reply to Terrileeloughlin]

It was the 'chemo .... that doesn't respond to the tumours' that was confusing. So, you've had the surgery, and now they want to give you two lots of chemo, so I imagine you're asking why do I need this if my CA125 is so low and they've cut the cancer out? If that is what you're asking, they will likely tell you its to 'mop up the mets', one of their favourite expressions, which means any tiny bits of cancer which may be floating around in the body because of the surgery, and any tiny bits of cancer they can't see to remove, to kill those off before they anchor themselves somewhere and grow. It is standard procedure with OC to offer chemo within 4 weeks of surgery, if possible. But I suggest you ask the question of them anyway, see what they say..

Miriam

[Terrileeloughlin in reply to bamboo89]

Sorry for confusing you, I confuse myself, and those around me, on a daily basis.😫

As I've bored everyone on here with before, is, why, if chemo wouldnt kill/shrink the tumors that could be seen, although, they were small. Would chemo work on something even smaller. I keep getting told, that it's a standard procedure, that, to me, says, we roll it out to everyone, regardless of needs. There isnt standard with cancer, so why, is the initial treatment standard. I was told, by the surgeon who found the tumor, that chemo, wouldn't work for me, so what I've asked my chemo nurse is, why, all of a sudden, it will. I know I sound like a child having a tantrum. Believe me, I'm not. But I've been told different things, by different, doctors, at different hospitals. I'm sure you understand my reluctance to listen to the oncologist, I met for the first time last week, who told me horror scenarios, and that i could where a wig!!. I'm sure, thinking about it now, it was her casual attitude, to my life, that really ☆☆☆☆☆☆ me off. Unfortunately, not at the time, as my brain, turned to water. So, I blame her, for me sounding like a brat🤦🏻‍♀️ xx

[Terrileeloughlin in reply to Terrileeloughlin]

Wear

[bamboo89 in reply to Terrileeloughlin]

Ok, so I checked your previous posts - you have low grade serous by the sound of it, which is known to not respond well to chemotherapy. That is presumably why they've been cutting it out instead.

You are absolutely right in that the protocol they use is standardized - this is because, by and large, there aren't any other options. Even with the new immunotherapy drugs, you generally have to have had chemo and find it doesn't work or the cancer comes back before they give you those. But just because they offer the only thing they've got (chemo) in the hope it might do something, you have a choice about whether you take it or not, and that seems to be what you're struggling with.

You don't sound like a child having a tantrum, you sound like a sensible, intelligent adult recognising the flaw in the plan of treatment they've offered. If the original surgeon said chemo wouldn't work on the cancer you've got, then why do they think its going to work now is a very valid question, and would suggest they don't necessarily think its going to work, they offer it cos its all they've got and it might do something. Or not. Ask them what percentage success rate they expect from it in your case. Ask them if your cancer has differentiated or changed in any way since the first time you had surgery, and is that why they think chemo might be useful this time round. They will have done a pathology/histology report from your last surgery, so if the cancer has changed, they will know.

If the cancer they took out this time round is exactly like the first diagnosis, and they give you a poor percentage success rate, you might decide that the side effects of chemotherapy are not worth it, because its unlikely to do very much other than damage other systems in your body. Or you might decide to try one session and see how it goes - if its not too bad, you've only got one more to get through after that, and you'd then find out whether it has any effect on the cancer. The trouble is, you may eventually get to the point where it pops up somewhere it cannot be cut out, but you might decide that will be the time to chance a bit of chemo to see if it does anything. Ongoing, will they give you more little bits of surgery where possible, as and when necessary, if you don't have chemo now?

Bear in mind that most medics are uncomfortable with a patient asking 'difficult' questions, especially if that patient has homed in on an area where they know all they're doing is following a routine, that the treatment is not tailored to you specifically, and that it may or may not do something. Plus lots of medics feel helpless if they're not offering some kind of pill or drug or whatever, because they think we think they have all the answers. And they don't, always.

Really, you need to hope someone else on here with low grade serous answers this question, because I don't have low grade, mine's high grade. I still refused chemo anyway, but that's another story.

Miriam

[Terrileeloughlin in reply to bamboo89]

Thankyou for saying that, I did feel like I was coming across as a pain in the bottom. I'm hoping when I go to mount Vernon, that they do have more information. I've only had one course of treatment, and that, was the surgery, nine weeks ago. And the next time I met anyone to do with my treatment, was last Thursday with my very unhelpful oncologist (she isnt the top, oncologist at the mount Vernon, I'm supposed to be seeing her in January. I suppose I've just got to wait and see, what is said, when I go back to the hospital. Believe me, if they say, that this is crucial to my recovery, I'll grab it with both hands. But because of what I've since found out, I'm very sceptical. X

[bamboo89 in reply to Terrileeloughlin]

I was editing my answer as you were responding! perhaps you'd better read it through again, just in case you missed it... check the penultimate paragraph.

[Terrileeloughlin in reply to bamboo89]

Yes, it is/was a low grade slow growing serous carcinoma. Is that what you meant?

[Terrileeloughlin in reply to Terrileeloughlin]

Also, I'm aware I may have to have chemo, at least once, before being given any other drugs. I did read that, somewhere. Also when my oncol nurse got back to me, yesterday, as she didn't have any information on me. She mentioned hormone treatment. So, that kinda tells me, when she read my case, and spoke to someone, they may have changed tack. She also wants to meet me, before I'm given any treatment. X

[Terrileeloughlin in reply to Terrileeloughlin]

I have looked for someone with the same thing, but some of the answers are so different to each other. Apart from one, if I remember rightly, had one dose of chemo, them hormone treatment.

Do you mind saying why you refused chemo?. I totally understand if not x

[bamboo89 in reply to Terrileeloughlin]

Why I refused is public knowledge - I'm now 69, and my cancer was Stage 4b when they found it. Surgery January 2018, and I've got two types because its differentiated; I live alone with no friends or family nearby, and going through 6 sessions of chemo wasn't something I felt I could cope with, as well as knowing it might only give me a few extra weeks, maybe months, at best. So I'm taking the palliative care route instead of trying to kick the can down the road for a short period. I might have a bit of chemo at some point for pain relief purposes, if that situation arises.

I hope you are able to settle on an acceptable plan of treatment at your next appointment.

Miriam

[Terrileeloughlin in reply to bamboo89]

I am really sorry to hear that. To go through this awful vile disease, is tough enough, mentally as well as physically, my heart goes out to you. If you live anywhere in Hertfordshire, I'd happily pop in for a cuppa. Lots of love and hugs, terri ❤

[bamboo89 in reply to Terrileeloughlin]

Ah, that's a lovely thought, thanks. I am in the south, but in Middlesex, (really its borderline West London) not Herts. Though its not far, its a long way to come for a cup of tea😊

[Terrileeloughlin in reply to bamboo89]

I really wouldnt mind. I start my treatment on the 10th of December, so, feeling a bit scared, but ready, I think!! Xx

[Nicky100]

I don't quite understand the question...sorry..did your tumours respond to a different chemo?

[Terrileeloughlin]

Hi nicky, I haven't had any treatment since my operation. So, no I haven't had any chemo at all. There is a very small chance that it works for the cancer, I had. Apparently the way forward for me, is hormone blockers, maybe after one session. I'll meet my oncologist nurse soon, so we'll work something out, hopefully.

[Spirit22]

Hi I did reply on this thread but see that there was another thread so sorry for confusion. I am little way ahead of you as had my debulking surgery Oct 2018. I was diagnosed 2a low grade. After surgery my CA125 was 9 and was the same at my last check up. I decided to go ahead with 6 cycles of Taxol/carbo every 3 weeks , started in Jan , finished in May. It was explained to me that hopefully would mop up any stray cells. As explained on the other thread low grade doesn't always respond to low grade, however on the advice of my oncologist I decided to go ahead. I am now on Tamoxifen as my tumour from histology reports was Oestrogen led. Sorry that you find yourself in this situation it is hard to take it all in, and you are right to ask questions so you can make a informed decision. The ladies on here have have a wealth of knowledge but I am also happy to answer any questions you might have. All my best wishes Lesley x

[Terrileeloughlin]

Hi Lesley, thankyou for your reply, I'm pretty sure you are the only one, I've asked that had exactly the same thing. I'll be meeting the chemo team soon, so I'll know, what my treatment will be. Thanks again, hope you stay well xx

[Spirit22 in reply to Terrileeloughlin]

Hope you have a good meeting and a treatment plan going foward . Let us know how you get on Best wishes xx

[Terrileeloughlin in reply to Spirit22]

Thanks Lesley, I will x

[Terrileeloughlin]

How did the taxol make you feel. X

[Spirit22 in reply to Terrileeloughlin]

Sorry only just seen your post . I can’t pretend it was easy but I came off relatively lightly to some ladies . It used to hit me on day 3 after infusion and feel really poorly for about a week . Unfortunately you will lose your hair on taxol , although some ladies have had success with cold cap .

Are you going to start treatment ? Feel free to ask any questions Xx

[Terrileeloughlin]

Yes, I start on the 10th December. I'll be meeting the team for information on the 5th. I'm not sure I want the taxol, so I'll see what they say, on the 5th. Thanks for getting back to me x

[Spirit22 in reply to Terrileeloughlin]

Bless you x it is overwhelming and daunting but you will get through it. Ps on the hair front I finished my chemo in may have a full head of really thick hair and have had a hair cut 😊Xx just trying to reassure you should you have taxol as well

[Terrileeloughlin]

Poorly in what way?

[Spirit22 in reply to Terrileeloughlin]

Extreme fatigue and muscle pain probably the worst symptom for me . However everyone is different . I didn’t have any sickness though as long as took anti sickness meds . They are very good at managing your symptoms . I am in north Essex by the way 😊 x

[Terrileeloughlin in reply to Spirit22]

Hi spirit 22. After sticking to my guns to get the answers to my question, I've been told that at this stage ( no sign of disease) there was no reason to give me chemo, even for rogue ones, as it cant be proved it would help. So I'll have a scan every three months, and see how we go from there. Hope all is okay with you xx

[Spirit22 in reply to Terrileeloughlin]

Hi there thanks for the update . I am sure you have made the right decision for you .

I am fine thank you had my 3 monthly check up last Thursday and all ok , next check up February probably the same time as you . Hope you have a lovely Christmas and new year and most of all keep well Lesley xx

[Terrileeloughlin in reply to Spirit22]

I'm very pleased to hear that😁. Happy Christmas to you, too, and a very heathly new year xx

[Terrileeloughlin]

Thankyou for the reassurance xx

[Terrileeloughlin]

I'm hoping I can take painkillers, I have two conditions, that give me muscle pain and fatigue, already🤦🏻‍♀️😟