Hello, I don't know if I am the best person to bring positive vibes at the moment, as my mum is going through the same. She was initially diagnosed in 2014 with ovarian cancer, it was found as our family were tested for the BRCA1 gene, my mum was positive. So began prevention surgery there were complications with the double mastectomy, delaying her ovary removal.
She eventually had the procedure, this showed the smallest tumor ever found in the ovary, as a result she began chemotherapy. Everything went brilliantly and she was then in remission.
6 years later last Nov, she had severe abdominal pain, and the CA125 levels increased at a rapid level. We were lucky enough to have her be able to undergo chemo again, however, this didn't go so great and she had allergic reaction, causing anaphylactic shock meaning not all chemo was given, and due to lock down the chemo was reduced From 6 doses to 4. She then had major surgery, taking part of the bowel, the peritoneum, urethra, rectum, omentum, and now has a stoma.
She was very poorly it took months to get over that surgery and only after the surgery were we informed they wouldn't be administering the further 2 doses of chemo partly due to the allergy to platinum having had it the first time, (this can be a common side effect during secondary treatment). Instead she was given the inhibitors, which in my none medical opinion don't seem to have helped her at all.
Around 8 weeks ago, she started not to feel great again and her CA125 levels are once more on the up doubling each time she has her monthly test (now at 250). She has a CT scan on Thursday, it'll be a few weeks before the results, however she is very poorly and deteriorating quite quickly.
Has Hasone else had anything similar to this? As we are now worried sick it has only been 8months since the last diagnosis and she has spent a lot of that getting over chemo and surgery.
Does anyone know if anything is available to have someone support her in-house, with day to day activities and meds etc
Thank you for reading....and helping if you can :)
Hi and welcome to the online community
I'm sorry to read how poorly your mum is at the moment and it's natural that you want to help as much as possible.
I'm not sure from your post if the cancer your mum has been treated for recently is the same as she had before, ie ovarian cancer. If this is the case I hope you don't mind me suggesting that you also join the ovarian cancer group as you'll then connect with others who have this type of cancer. I'm sure they'll be happy to share their experiences with you and answer any questions you might have if they're able to.
To access practical support it would be your mum's local Adult Social Care Team that you would need to speak to. They can provide guidance on support options and carry out a ‘needs assessment’ to see what support (such as additional care, equipment or modifications) would be most helpful for your mum.
You might find it helpful to join the family and friends group where you'll find lots of people in a similar situation who can tell you what help they've accessed.
To join these groups just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could pop something about your mum's diagnosis and treatment so far in your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
