What options after chemo?

[ymck]

Hi all, we got the news today that unfortunately Mam's chemo (she is stage 4) isn't working and the consultant has made the difficult decision not to continue treatment (weekly taxol). She previously had carbo/taxol which stabilised her for 5.5 months. She had a reaction to Avastin so couldn't take that. The doc then tried Gemzar and now Taxol. She previously indicated that she would try Caelyx if the taxol didn't work but Mam always seems to have an allergic reaction to her chemo so the consultant thinks it would make her worse. She was admitted to hospital today with breathlessness, severe ascites pain and kidney infection. We hope they'll insert a drain over the weekend to ease the pressure and pain.

So what now? Do we just manage the pain and wait for the inevitable? Should we insist the doc try something else? Really don't know what to do.

[SandyL]

I'm so very sorry your Mam has reached that place where is seems there're no other answers to relieve her of the cancer and it appears her Dr has used most of the available options. You mentioned that Caelyx wasn't ruled outs a treatment option, but with your Mam having a history of allergic reactions, decided against it.

I was diagnosed with Stage 4 Ovarian cancer over 18 years ago, so when I read about your Mam's discomfort and breathlessness (I had massive pulmonary embolisms), it brought it all back to me, so I understand what a scary time it is for both you and your Mam. I was lucky to get into remission after chemotherapy and surgery (had 3 carboplatin and taxol before surgery and 6 more after) and have remained in remission ever since.

During the last 18 years I've come to know many women. Shirley, was diagnosed with Stage 3C Ovarian cancer a couple of years before I was diagnosed. She had ran the course of all the chemo's that were offered to her with each recurrence, so when Doxil was offered to her, with potentially nasty side effects (sore, peeling hands and feet comes to mind), she was a bit dubious about it, but decided in the end, to give it a try because at that point she had nothing to lose and perhaps could gain more time, ... at least, that was her hope.

Once she started the Doxil treatment, her Ca 125 that actually increased for the first 2 or 3 treatments, but then started to drop a bit at a time after each treatment. Apparently, this was a common occurrence with that type of chemo and she had been warned that this was a possibility, so she was in fact, fully prepared.

Shirley, said many, many times, it was the BEST chemo she'd ever had and it kept her with a good quality of life for two years, with few (manageable) side effects.

Unfortunately Shirley eventually succumbed to the disease, but Doxil (Caelyx) gave her 2 wonderful years of quality life before it stopped working for her. I'm not saying this is the answer for your Mam, but at least it's something to think about isn't it?

Your Mam is in my prayers to be free of pain and discomfort and to find a treatment to extend her life. Love, Sandy (originally from Middlesbrough, now in BC, Canada).

[Hidden]

So sorry to hear of your Mam's situation - I hope she gets relief in hospital from the pain she is experiencing. Is her consultant going to look at any other treatments or a clinical trial? I would ask the question and try to get as much information as you can, it's very difficult sometimes knowing what to ask. I am starting a treatment called Olaparib as the latest chemo I was on since March (Topotecan) wasn't effective and my disease has progressed. I'm hoping to get some more information from ladies on this site and Ovacome with regard to how it's working for them. I've already spoken to one lady and her experience on it is not too good.

Thinking of you.........

Juliet x

[ymck in reply to Hidden]

Hi Juliet, I hope you're well and you enjoyed the wedding. I'm sorry to hear you've had to change treatment also. I've read about Olaparib and hopefully that will work for you. Mam actually hasn't seen her consultant since Monday when the drain was inserted to take off fluid, she's only seen some of her team. They've removed over 3 litres of fluid now and feels better in herself.

The palliative care team came to see her today and were very helpful. She can be a bit of a martyr, and was refusing to take morphine up til Monday but I'm hoping the palliative team can persuade her of the benefits of taking it when needed so she can try to be 'normal'!

Now that Mam is feeling better in herself we've printed off some stuff from the web so that we can show the consultant different options we've looked at, trials etc. I know not all will suit but it helps when conversations get jargony to have something written down.

Take care and mind yourself

Y

[Hidden in reply to ymck]

Hi Y

Wedding went really well thanks ! Wednesday was registry office part and lunch just for immediate families, reception and after dinner party on Friday - I hope I can last the pace - it will be a long, long day!

Great idea to get some ideas re trials. Clinical Trials Ireland are advertising on the radio at the moment, encouraging people to contact their GP or their organisation directly to investigate further. I really believe that this is the way to go when other options appear to be running out.

I wish you all the best - let us know how things are going?

Juliet x

[thesilent1]

I'm sorry to hear your mam isn't responding to her treatment. I think I would ask about clinical trials if I was her. Please remember though, it has too be her decision. I know this is tough for you all. Best wishes. Ann xx

[thehusband]

The first thing I would do is get a 2nd opinion, of course that may be the same as your current Onc but at least if it was you would have two people saying the same. Depending on what 2nd Onc says it may be worth considering something like Letrozole, which for some holds the progression. You mentioned Caelyx, obviously everyone is different but as this is normally given every 3-4 weeks some find it not so harsh, so perhaps that is also worth trying. Bear in mind that Caelyx is notorious for taking 3-4 infusions before (if) response is seen.

In my opinion the main thing is to make sure you exhaust all options, obviously as long as your Mam is happy to do this. Best of luck.

[kittie]

Dear ymck I am sorry things are not going to well for your Mam but like some of the other ladies said seek a second opinion also ask if there is a trial that maybe suitable for your Mam. Give you Mam a big hug from me. Kittie

[Hidden]

Hi there ymck, so really sorry to hear your Mum is unwell. I think a second opinion might help. For now you cant do much about that unless there is a second oncologist in your Mums hospital. I hope they will drain the fluid and make your Mum comfortable. Then once your Mum shows signs of being back on form, I would consider a second opinion. Doctors do differ, perhaps they could offer her another drug, perhaps in the next few days, you might get a chance to speak with her consultant and based on that make a decision with him. I suggest if you are near an Arc Cancer Support House or Cancer Care west, dont be a stranger. They will listen to you and help tease out what exactly you need right now. There are Arc Support Centres, Dublin Cork, West Cork and Youghal. There is Cancer Support West in west of Ireland and also The Haven in Tralee so hope one of these is near you. I found Arc invaluable

[ymck in reply to Hidden]

Hi Suzuki

Thanks for taking the time to reply. Mam used the services of Arc quite a lot and she found them absolutely brilliant.

I haven't used them much myself but I might give them a shout and seek advice. Thanks for the heads up.

At best though we need to sit down with the consultant and discuss all options available before drawing a line under it.

Take care

Y

[Hidden]

That is good and Arc is also for family and confidential as well. They listen and allay your fears a little and give good advice. Yes it is a good idea to speak with the consultant and see if anything else is available.