Decisions about chemotherapy

[mandipandi]

Hi this the first time I have written a blog, so I apologise if it is a bit long!. My mother(aged 76 (normally quite fit and young for her age!) has recently undergone an abdominal hysterectomy, removal of both ovaries, fallopian tubes, womb and omentum. Two cysts were found. it has been confirmed that she has stage 2c ovarian cancer (affecting a fallopian tube and both cysts) and yesterday she had her first appointment with the oncologist registrar. I accompanied her and we were given so much information about options for chemotherapy - carboplatin, carboplatin and taxol combined, and the option to take part in a trial where instead of having treatment every 3 weeks for 6 sessions, she could have weekly treatments for 18 weeks - trial is trying to establish whether it is better to receive smaller doses of chemo at more regular intervals. We were informed of the side effects ranging from nausea, diarrhoea, hair loss to tingling sensations and loss of feeling in fingers, hands, toes and feet, and all the other side effects affecting different parts of the body. At the end of the meeting mum was given a folder with copious leaflets and brochures to "help" her make her decision of what treatment, if any, she wanted to go for. We have got a further appt booked in 2 weeks where we can ask further questions and then she gives them her decision. We have been totally overwhelmed by this, as it seems the side effects could worsen her quality of life. She was told that no visible evidence of cancer is shown on her scan. She had another CA125 blood test yesterday to compare to the one previous to surgery which was 1085. She is in a real quandry what to do. Is there anyone who has any similar experience, simliar age group that either opted for just carboplatin, both carboplatin and taxol etc. We thought mum would be advised which treatment would be best for her situation. We did ask many questions yesterday but feel mum needs further help and expertise to help her make this life changing decision. She does have an appointment with her GP in the next week. I am wondering if she should ask to see the Consultant or get a second opinion about treatment. I value any comments. Thank you so much

[Hidden]

Hi sorry to hear about your mum... There are difficult decisions to be made.. and so hard when you have choices... but of course they need to be made... you could give the OvaCome helpline ring... and ask to speak to Ruth Payne (Ovacome nurse)..she is very good with advice and I speak from personel experience... she will ring you back.. the number is - 08453710554 -

Best wishes x G x

[mandipandi in reply to Hidden]

Thank you Gwyn, I will do that

best wishes M x

[RuthPOvacome]

I am Ruth the support line nurse and would be very happy to talk things through. The whole thing can be very overwhelming and confusing and you are not alone in feeling this way, Do give us a ring if you are able 08453710554 or 0207299650

Best wishes

Ruth

[Whippit]

Dear Mandipandi

I'm so sorry you're going through all this. The hospital consultations are terrifying as you want them to tell you what's best. However they just don't know. They do on about absolutely every side-effect but some of us are lucky and don't suffer at all. I had just carbo-platin as there was a mix up and I couldn't be booked in for taxol. The one dose did the trick for me. Apparently, so my consultant told me, Taxol only does 10% of the job but it has horrid side effects such as hair loss.

I think if you have Taxol weekly it avoids spending all day in hospital having 3 infusions in one day. That would appeal to me. I've also heard that young cancer cells divide more quickly than older ones and you're more likely to kill the nucleus on more frequent regimes. Cancer cells have a funny property in that you have to kill the nucleus to exterminate them whereas healthy cells are killed by attacking part of the cell.

What is good news is that your mum's cancer hasn't spread to the lymphs. I'm sure it's worth trying chemotherapy to see if you can get her in remission. The lovely ladies on this site have some very good suggestions for dealing with side-effects.

Good luck to your mum. She's a lucky. Lady having such a caring daughter.

XxAnnie

[Hidden]

I remember it so well. For the first time, after a lifetime of being told what to do by doctors (not that there had ever been anything wrong with me), they suddenly started to ask - to ask about something I knew nothing about!!!

Ok, so the thing to do was to become better informed. Reading the information, you will find that it's all about the side-effects, not much about the benefits. That is simply because the benefits are not always evident.

I quickly became aware that this process was -for me- one of working out how to get the most benefit from chemo - if I was to have it at all - with the least damage. I was lucky; my surgery was brilliant and the tumours were all removed cleanly. I was of a mind to leave it at that, but the oncologist insisted that unless I had chemo, 'it' would be back inside the year. I was offered two trials - avastin, and something else. I read the possible problems and rejected them. So, I was told I would have carboplatin/taxol. I read about it and said why taxol? Because that's how it's done came the reply. Ok, I agreed to carboplatin alone. I was told that 'I wouldn't get the choice if I was in USA' I pointed out that this was yet another reason to be grateful that I was not! I was told that other patients were 'desperate' to be offered the trials I had refused. 'So, offer them to them', I said.

Taxol does 90% damage with 10% of the benefit, my oncologist admitted - carboplatin 90%benefit, 10%damage.

I don't know if I needed chemo at all. Even 'just' carboplatin (6 doses in 18 weeks) gave me persistent anaemia, muscle and tendon pain and weakness that took 2 further years to recover from, and my ca125 was below cancer levels by the first dose. It's an insurance policy - but not one without repercussions.

I was 53 with stage 3c, grade3 cancer.

I've been in remission for 3 yrs since ending treatment. I have changed my lifestyle drastically, and my diet a little as it wasn't bad before.

Good luck to your Mum - I think she must follow how she feels and what her intuition tells her as well as the information.

Isadora

[Hidden]

Hi

The others on here are much more knowledgeable on the chemo question than me but I just wanted to wish your mother all the best for whatever treatment she has.

Keep us posted.

Linda

[Clarissa]

Hello there

My mum was in a very similar situation- aged 79, stage 2c, cancer in the ovaries, fallopian tubes, womb and lining of the peritoneum (sp?) She was diagnosed in July last year. After her op she had six lots of carboplatin. She wasnt offered taxol, I suspect because of her age, we didnt ask. (Too shellshocked, just went along with whatever the consultant suggested TBH) .

That said, like your mum, she was very fit for her age until OC came along. She had a post chemo-scan at the end of treatment and there was nothing on it. So far, so good, 11 months after diagnosis - though we have an oncologist who likes to remind us constantly that 'it will be back', mum is just getting on with life.

She has suffered terribly with peripheral neuropathy (tingling in hands and feet)....this is still going on five months post chemo and she has been told she will have this for life but i think she probably thinks it's a small price to pay if she can stay in remission for as long as possible. Whether this affects whether she will be given carboplatin again or not I dont know. Trying not to think about that.

My personal experience is that chemotherapy is very ageing (had a huge cocktail myself for breast cancer at 37) but my mother has aged 10 years overnight and the whole experience has left her very thin and frail. It is very tough watching your mum go through this, but I'm sure she will so glad of your support, whatever she decides. Personally, if it was me, I think I'd take everything they offered me, but I think it's much harder when you are that much older to withstand the treatment. The side efefcts of carboplatin, apart from the tingling, did not seem to be too bad on the whole. I havent had taxol, I know people who have, and I think side effects are generally judged to be worse than carboplatin.

Best of luck to your mum and best wishes to you.

Cx

[mandipandi]

Hi, I just wanted to say thank you to everyone who left comments after my first blog about decisions on chemotherapy for my mum. I have found them all invaluable and did contact Ruth Payne, who helped a great deal. Since then mum has had an appointment with her GP, who she found supportive and he suggested she ask further questions at her oncology appt tomorrow and then go back to him again on Friday before she makes her decision. S

In view of the side effects from Taxol, I think at the moment she is hovering between trying some Carboplatin ,or leaving things as they are if her blood test and scan results come back normal. Her scan is booked for next week. I will let you know how she gets on ....... thank you so much for you support, you are incredible ladies! Fondest wishes to you all xx

[mandipandi]

Hello again, mum decided to go ahead with Carboplatin and has now had 2 sessions of this. After the first one she had sickness and nausea, fatigue and some soreness in her mouth. She also had a bright red face the first day after treatment. By the beginning of the third week she seemed to recover fairly well. At her second appt she had the dose reduced slightly in view of the kidney tests and was given some puriton to help with the redness. Unfortunately after her second dose she has experienced some bad chest pains and palpitations. she has got a heart condition that is controlled with medication and has had some tests including ECG and 24 hour heart monitor. The hospital have been very supportive and mum is improving again now. Further discussions about how to proceed with her chemo will be done at her next appointment in a couple of weeks. I wondered if anyone else has experienced chest pains and palpitations, red face etc on Carboplatin?

I try to keep in touch with ovacome by reading your blogs and as always I think you are a wonderful group of very special ladies!

Kindest regards x