Hi Ladies, I'm new to this site so am hoping I am doing this right!!
Firstly I'd like to say thank you for all your posts! Reading these have helped me so much understand things and panic a little less!!
My lovely mum (69) was diagnosed with stage 3c peritoneal cancer (endometriod type) 2 months ago. She had a laparoscopy 3 weeks ago to do various biopsies and remove her ovaries (she had hysterectomy in her 30s). The results of all the biopsies were unfortunately positive. The oncologist has told us that the pluses to this type of cancer is that it tends not to penetrate the major organs but the down side is it is surrounding them all. At this stage we have been told surgery is not an option. She is starting chemo on Thurs and the plan is 3 rounds of chemo (carboplatin and Taxol) then possible surgery followed by 3 more rounds of chemo. We've been told the scan after the first 3 rounds will determine whether surgery is possible.
Right now I have 2 worries...her blood tests have shown that her kidneys are not functioning properly so that may affect the dose of chemo. We haven't had the kidney results yet but am hoping this doesn't delay the chemo. Also over the last week she has been having a lot of lower back and stomach pain. Sounds like the pain in going from front to back. Am worried that the cancer has got worse/spread further since her scan 2 months ago. She is managing to cope with Tramadol & Paracetamol but the Tramadol is not helping the constipation!!
I have read a lot of ladies on here are also on Avastin. I have no idea what this is or if something I should be asking for mum? Any advice is much appreciated.
Mum suffers from agoraphobia so hospital visits are very hard for her. I am going along with her to first chemo on Thurs. Again any advice on what I could do to make it a little easier for her would be great.
Sorry this has turned into a very lengthy post!:)) Just want to have as much info as I can to make this as easy as possible for mum.
Xxxx
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gmarch72
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Hello. I am so sorry to read about your mum but you do sound like you're positively focused on her support. She's lucky you're there for her. Other people are probably better placed than me to advise on the pain/treatment side, but in terms of the first chemo itself this is what I'd do in your shoes:
1. bring along some "distraction techniques" such as a book (or does she use a tablet
to watch downloaded TV programmes etc), or knitting etc? Or listening to music through headphones, or looking at family photos on the phone etc
2. my carboplatin/taxol seemed to take most of a day, so if there's anything your mum particularly likes to eat, such as fruit/herbal teas etc, take that in to supplement the hospital-provided sandwiches
3. sometimes I felt a bit grubby and hot, so I liked to have some baby wipes with me for my face/hands as when you're all hooked up you don't find it easy to move to the toilet etc
4. And finally I'd look at the info on the Macmillan site about Chemotherapy so that she knows as much as possible about what to expect on Day One.
I suppose it's all about making the time pass as quickly as possible, and it not feeling too unreal (which it all undoubtedly is!). Wishing you both all the best of luck, and more replies about the medical side from others x
I agree with all of the things Minard has suggested for keeping occupied. I also enjoyed a bit of people watching and wondering what they all had/what drugs they were having!
From a practical perspective, comfy clothes are helpful because you are sitting down for so long. Plus clothes that are easy to adjust for trips to the loo - I always have a cannula in my hand so need to wear trousers that I can pull up/down easily as one hand is pretty useless! If your mum has a PICC line then this might not matter so much. I also wear a cardi or take a pashmina so that I have something to wrap around my shoulders if I get chilly.
Ooh didn't think about clothes thanks Yoshbosh! Also she seems to be cold a lot at the moment so I will def make sure she takes a few layers. Thanks for the advice X
I love people watching so that's a good pass time but you end up having a good chat with some lovely people, Also I drink plenty of water as it helps the nurses put the cannula into a bouncy vein (the nurses medical term) I bring my kindle and plenty of snacks. Wishing you mum well Karen
Thanks Karen. We bought mum an iPad a few weeks ago and she is loving doing things like Solitaire and crosswords. Will make sure she drinks plenty before we go. X
I don't know all the protocol surrounding Avastin. I get it because I am on a trial. Very basically it stops a blood supply feeding tumours. At least that's how it was explained to me. Having read other posts I think it is not readily given so please ask the oncologist. Your mum is lucky to have you supporting het. Tracey
Thanks Tracey. I had a lovely chat with one of the Ovacom online support nurses today and she was very helpful in explaining about Avastin and helping with other questions. I hope things are going well with your trial. Best wishes. Gwen X
Ah that's good news! Cycle 5 wow you've been through a lot!! Well done! Gwen X
Welcome to the site, it is hard for your Mum if she doesnt like going out much but I think the idea of the tablet is a good idea. Maybe some music if she likes that on an ipod or personal cd player. The first day they find a vein and put in a canula and take bloods and let it there for the treatment. The treatment may take a longer period first time as they will slow the drip down in case of side effects. If your Mums kidney function isnt up to par, then Avastin wont be given until it is. But that is a bit down the road. So for yourself, bring a book or knitting or puzzles. Hopefully there will be a cafe in the hospital where you can grab a cuppa.
Thanks Suzuki. I think the music would be a good idea for mum. Have been searching for some relaxing music that might help calm her. I've been trying to teach myself to crochet so I suggested we could do it together while she is having chemo. Due to her agoraphobia the hospital have said I can stay with her during the treatment which is great. X
I was also told that surgery was not possible unless the chemo shrinks the tumour to make the operation less dangerous. I think quite a few of us have three or four chemo and then go on to have the operation. So wishing good luck for your Mother!
As for the chemo itself, some chemo wards can be cold, so take some layers. As suggested, books, magazines, mobile phones all help to while away the time. Some wards are noisy so earphones will help.
Do ask about Avastin but my understanding is that it isn't given before planned surgery. I think even dental work has to be avoided.
Thanks for your kind wishes. I spoke with an online support nurse today re Avastin and she said as you have, that it's not given until after surgery. I hope your treatment is going well xx
Lots of good tips already but here's a few about the actual Chemo chair! They generally recline which is good for getting comfy and having a snooze, they also generally have electric heating pads in case your mum is a bit chilly, Or they will provide a blanket and extra pillows. I take my kindle, mobile phone and some mags but also usually end up talking with others which is nice too, it's easy to manoeuvre the chemo stand when you need to go to the Loo, the alarm may go off but don't let your mum worry about that, it happens all the time!
Thanks Clare for your kind wishes. I imagine it can be really helpful and comforting to chat to others that are going through chemo at the same time. I did wonder how it would work when mum needs the loo so it's good to know she can manoeuvre stand and go herself. Gwen x
I was sat in the chemo unit today having chemo 5 and I Thought of a couple more hints !! There are usually privacy screens available so if your mum would like one for her agraphobia then don't be afraid to ask for one. Also get your mum a journal so she can write notes on how she feels and what (if any) side effects she is having- Day 1 is the day she will have chemo so she can note and refer back to them for her meetings with her Oncologist and see how she's likely to feel on the next Chemo session. This has been so useful to me, I know how long my metal mouth taste kasts, when my 'bad' days are et etc.
I also have an Instagram account which Instarted purely to upload photos of my nephews wedding last Sept- well I load my chemo journey and my garden photos, I am communicating with some fantastic ladies across the world who have ovarian cancer, breast cancer, love gardens, know me etc etc. It's so helpful to take photos and load them and get comments !! Just a thought! My page is clarehoski and my photo is me wearing my large wedding hat last Sept!
Ah Clare how lovely of you to think of us and reply again when you are going through a tough day of chemo! Hope it has been okay for you. Loving your journal idea thanks! Will get one looked out for tomo. Liking the Instagram idea too...mum just getting used to an iPad but I think she could get the hang of Instagram. Feeling a bit nervous about tomo but also glad the treatment is finally starting. Thanks again xxx
I was the same age as your mum when my journey started, I think you have been given lots of good advise I kept a daily diary it helped me remember times taking meds. I also wrote how I was coping with side effects and was able to talk to my team and get appropriate help and advice. Love to you both Bridie xx
Hi, debulking can be done before start of chemo, during chemo or even after... I reckon, its disease and need dependent, decided by the onco/onco surgeon.
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