Advice

[DeeLee1705]

My Mum was diagnosed with ovarian cancer in June 2017, had surgery and followed with chemo which ended in Jan 2018, after scan and an increasing CA125 levels she now has cancer in her liver and they think peritoneum she starts chemo again tomorrow (Liposomal) .. the first time was hard enough ... but the thought of going through this again is causing huge anxiety with my Mum. Supporting her us going to be difficult .. it was so hard last time and being here again so soon seems so unfair ( I should add My Dad was diagnosed with bladder Cancef I. December 2917 too!!!)

[BeeWild]

Hi lovely your mums timeline is exactly the same as mine only my recurrence was picked up at the beginning of May. I’m back on chemo of weekly taxol which to date has been fine and I’ve stayed in work up to now and I’ve had 6 of the 18 doses x

I’m not familiar with the liposomal treatment but I’m sure some other ladies may be x

All I can say is that for me this has been far less harsh than front line chemo and it’s working too as my Ca125 has dropped significantly x

Your mum is bound to worry as I did but it may not be as horrid as she’s imagining x

Good luck with it all xx

[DeeLee1705 in reply to BeeWild]

She was offered this treatment but we thought weekly might be too much for her .. Fingers crossed, thankyou for the reply xx

[Lyndy]

My thoughts go out to you and your Mum. This disease is so difficult and it doesn’t play by the rules.

It took me a while but I did go to my local Macmillan centre for support during and after my treatment and more recently when I began to recur. They help not only the patient but the whole family.

There must be a similar service near you. It’s emotional support. someone to talk to beyond family who are also worried. And they can get you help with practical stuff too.

Hopefully your Mum will find this chemo doable but she will still need lots of tlc.

All the best xx

[DeeLee1705 in reply to Lyndy]

Yes have Cancer Care York’s and have had some support but to honest speaking about it didn’t help after a few sessions fingers are crossed for tomorrow x

[Neona]

I recurred soon after frontline and it came back in my liver and abdomen. I was iffeted caelyx but am on a clinical trial instead. It is less harsh than the original chemo although I am not feeling great at the moment- but it has kept me stable for 6 months so far.

[DeeLee1705 in reply to Neona]

Mum was offered clinical trial but refused good to hear you are stable so far good luck.

[Irisisme]

Hi DeeLee,

I just checked your profile to see if there was more about you and your Mum but no luck there. Is she still independent and able to keep control of her own treatment or does that burden fall on your shoulders? If so that is really tough on you and maybe Cancer Care York weren’t what you needed - what does your Mum think about them?

Maybe there is some other support for you both. Sometimes counselling can help. I had a couple of sessions through my local Hospice and used them to dump all my negativity onto a complete stranger! That helped me although no actual advice was offered.

I don’t know the drug your Mum is on but if she was offered weekly Taxol wasn’t that a third of the dose she’d get if having it every 3 weeks? This is what I’m having 2nd (well, really 3rd) time around. I was on Carboplatin 2nd time and that was every 3 weeks until an allergic reaction, now it’s weekly Paclitaxel, which I am tolerating very well - the same dose as it would be every 3 weeks but spread out a bit more. It’s worth checking again - unless it is the weekly hospital trips which is the problem - the weekly regime is harder to fit a normal life around.

What has the Oncologist said about the liver? How bad is the spread? How is it affecting your Mum? Us ladies here might be able to offer more advice/support if we knew more. I dodged the liver bullet as it’s ON my liver but not IN it. My biggest problem is seeding all around the small & large colon, which tends to cause paralysis. Here on this site we all have things in common but also all have our own individual issues.

Could you tell us more about your Mum? You may yet find someone who has the same problem she - and you as her career - has.

I do feel that it is often the carers of those coping with cancer who have the greatest burden so my heart goes out to you especially, but I do hope your Mum finds a way to cope with her treatment somehow.

Hugs to you both,

Iris x

[DeeLee1705 in reply to Irisisme]

Iris thanks for your reply, Mum is 76 was very fit prior to surgery last year, she lived independently with my Dad who is 81 ( Dad has bladder cancer too diagnosed last November) the cancer is on her liver as I understand it and they described the ‘shadow’ seen on the peritoneum as formed like a ‘film’ across it. the initial scan after the first chemo showed everything clear and CA125 level stabilised at a low level(30”s) and no cancer was in the lymph nodes after surgery. Cancer was described as stage 3c. I don’t think she would cope with the weekly visits (she thinks the same) we both went for counselling .. she gave up after a couple of visits but she was angry with everyone. I had about 7 sessions but just was sick of talking about it . She’s currently very quiet and anxious again which is hard. She won’t go anywhere I struggled to get her to go away for a couple of days last week to her sisters.

[Elfed]

I’m the same, was diagnosed may 2017, 3 chemo’s, operation then 3 more chemo’s, thought I was ok, but may scan this year showed it back in my lymph nodes in stomach so now had my first of 6 chemo’s every 4 weeks.

It’s annoying, but look at it as just a blip in life.

[DeeLee1705 in reply to Elfed]

Thanks for your reply “ just a blip in life” you are so right, hope all goes well 😊

[Alifit]

Hi DeeLee,

I think the treatment your mum is about to have is also called Caelyx which is the trade name for liposomal doxorubicin. Many women have it alongside more Carboplatin (usually given with taxol for first line treatment), to tackle a first recurrence.

I am about to start this regime for my first recurrence - it does have side effects but many women report it as being ‘doable’.

Is is really hard to support someone who has cancer - harder than it is being the patient I think. You are doing a great job. This forum will give you loads of support and advice, so keep in touch and update us on your mums progress. You can also rant and rave when it is getting on top of you - we’ve all done it - no-one minds!!

Best wishes, Ali x

[DeeLee1705 in reply to Alifit]

Thanks I’m sat here now with her, she has the cold cap on again as it helped last time .. will definitely update you all thanks 😊

[Katsmum]

Hi DeeLee

Sounds like your mum is having the standard second line carbo/caelyx which is more doable than the carbo/ taxol but just be prepared for constipation and general fatigue after the first few sessions . Otherwise it was fine and will hopefully bring her a good remission. Xxx

[DeeLee1705 in reply to Katsmum]

She already suffers with both .. fingers crossed 😊

[coksd]

That sounds tough on both your parents and for ye as carers to have them both suffer and probably not able to support each other. I hope you can get help and have a support network whether it be family neighbors friends, just accept any offers of help that you get I am 36 and went through my treatment and my dad was in last stages of dementia at the same time he passed away just after my treatment but my mum just ended up so wrecked at the end of it all although we didn't get my mum to help much as she was with dad I took offers from anyone who offered to take my kids make meals lifts etc. Is there a cancer support counselor or group that your mom might go to or would she try reflexology I felt reflexology and gentle massage helped me so much I have huge anxiety around hospitals and treatment Im on avastin now as I have stage 4 and its just controlling it at this stage. I hope you get a care plan sorted and your mom feels better soon and treatment will be good for her. xx

[DeeLee1705 in reply to coksd]

Thanks for your reply, sat here now while she’s having treatment. Not had much sleep myself and woke with a banging headache and brain was on overdrive and it’s nog me having the treatment. Feels like my brother is in denial and won’t discuss but friends have been brilliant. Fingers are crossed xx

[Luci22]

Hi, sorry to hear about your mom and dad too. That's tough to have on your shoulders. I've been helping my mom in any way from the start, I know how draining it can be, mostly emotionally but also physically. She's doing well now, so far.. fingers crossed. Coksd mentioned reflexology or massage, a great idea to help relax and soothe. I massaged my mom's feet often, it helped her relax and sleep. Sometimes we went out for massages together,nice way to get out. Reflexology is powerful on relaxing the body and organs, I hear. Many times we just went for a drive in the car, to get out. If you need any nursing assistance for home ask for that from the medical team. I went for therapy but to a psychologist outside of cancer centre. Just found my own. She helped me to focus on self care so that I could better help my mom and be as strong as I could. I also had to reframe my thinking, I had to learn to accept what is and deal with what to do now, accept this new reality. Still a work in progress!

Hang in there, you're a good daughter. Big hug for your mom. She can do this!

[Irisisme]

Hi DeeLee,

Those who suggested reflexology and other therapies know how good they are. It’s not that they can fight the cancer it’s just that they do make the patient AND carer feel better - a little pampering goes a long way!

It sounds like your Mum is a bit depressed, maybe even to the point where she, or you, need to speak to your cancer specialist nurse or your GP - Macmillan might help but will probably just suggest counselling and you’ve both been down that road. It could be side-effects of drugs other than chemo.

There’s not much you can do with family members in denial except demand some physical help. Your brother could do the shopping or provide transport or something similar. Not sure what you could do if he refuses.

I just hope you find something or someone who can help.

Lots of hugs,

Iris xxx

[DeeLee1705 in reply to Irisisme]

Thankyou today has been a long day it went ok she’s gone and tomorrow’s another day ... hopefully she’ll be ok x

[DeeLee1705]

Well here’s an update ... first one went ok she was a tad ‘flushed’ in her face yesterday but she’s not talking, in a mood .. I called to return the dog, my son rang her and told her I was upset she had asked for a one way ticket to Switzerland (which she did) and she said she was joking ....well it’s not funny.. at all .. I’m so upset .. she then walked in the house and put the tv on and ignored me .. she’s bloody rude and now I’m upset again ... I came home and cried (again). This morning I’m going to s friends 50th which involves an overnight stay ... guess I’m nitcsklowed following the redponse I got 😩 but I’m going whether I shouldn’t in her eyes feel like I’m dealing with a child’s tantrums 🤔