Mum - high grade serous stage 3c - debulked awaiting chemo

Hi L,

I also have high grade serious stage 3c. I'm currently undergoing chemotherapy prior to surgery and am receiving carboplatin and paclitaxel.  I've had two cycles so far so my experience is limited.

Both treatment days have been completely fine. They will give your mum an antihistamine before they start infusing the drugs which may make her drowsy. I dozed through most of the first treatment.

She will be given steroids and anti-sickness drugs to take for the first two days after treatment. I woke up really early the first day, felt absolutely fine and had lots of energy. The next day was ok as well.

Unfortunately I woke up on day 3 with a lot of pain in my abdomen, pelvis and down both legs. In the hospital they had talked mostly about watching out for signs of infection and tiredness and I honestly don't remember them mentioning pain although it is in the list of common side effects. As well as the physical pain, it was mentally hard as I hadn't been expecting it to hurt and I had no idea how long it would last. I used co-codamol and ibuprofen so I would recommend that your mum is stocked up on pain killers just in case. I was also constipated (another side effect) which probably didn't help so I took Laxido. 

Apart from the painkillers there wasn't really much I could do for the pain except limit my movement and wait it out.  It was quite bad for 2 days and then day 3 was better and by day 4 I was feeling much better.

I used a cold cap to try and limit hair loss. I know a lot of people can't tolerate the cold cap but I found it to be ok. Unfortunately it didn't work for me and almost two weeks to the day of treatment I started losing my hair. I lost about 80% of my hair within a week. I have bought a wig but I mostly use hats and scarves to cover my head when I'm out. It was fairly traumatic at first but I got used to it quite quickly. 

I had my second treatment a week ago and had the similar side effects although no constipation this time thankfully. Today is 7 days following my 2nd treatment and I'm feeling fine again so 'normal' life resumes. I have an 8-year old daughter so there's quite a lot of activity! I just take extra precautions such as wearing a facemask if we're going somewhere busy or choosing a quieter time to do an activity. 

I'm approaching future cycles with the assumption that week one will be hard and disrupted, but weeks two and three can be fairly normal. I'm not sure I would manage the gym as I do tire more easily than I used to but we go for a brisk walk each day and I attend a weekly online pilates class for cancer patients. 

I'm also trying to plan something nice as a treat/reward for getting through each treatment as it gives me something to look forward to. Something like an afternoon tea or a massage. This is something that a friend who has had treatment suggested and it really helps. 

I hope my experience and suggestions help and I wish your mum all the best with her treatment x 

Hopeful, thank you so much for taking the time to reply such a considered message. It’s really appreciated.

I’m so pleased to hear you’re managing well - I have a 5 & 7 year old so I know what it’s like; you deserve an award for managing this and being mummy too!! I hope your daughter is helping to lift your spirits a bit through your treatment.

Having something to look forward to is a really excellent idea. I’ll get something planned in for her.

Thank you so much again for your reply and I hope the rest of your treatment continues in the same way, and that you have a swift recovery from your surgery.  Wishing you all the best.

Lx

Hi L,

Just completed my third treatment and I have been thinking about you mum. How did she find the first treatment? Has she been ok with the side effects? 

x 

Hi Hopeful! 
So kind of you to check in, how are you feeling? 

Gosh we had a right mare. The hospital “lost” Mum’s consent form, so the treatment has had to be pushed back to the 4th Feb. So she starts next Tuesday. 
Not great when you hear yourself up so much for it only to find out 2 days before that it isn’t happening!! But we are where we are.

How are you? How are you feeling about your op? X

Oh no.

I think the wait for the first treatment is the hardest. It felt like time slowed down between being diagnosed and finally having the first treatment so I can image how frustrated you must be with an extra delay. Once she does get going you may feel like time speeds up. I couldn't believe how little time it felt passed between cycle 2 and cycle .

I'm  doing ok thanks. They've reduced my dosage of paclitaxel to 80% of what I had in Cycles 1 and 2. Apparently of the two drugs, the carboplatin is the 'cake' and the paclitaxel is the 'icing' so they can decrease the paclitaxel dose if needed but don't like to decrease the carboplatin. Worth your mum knowing so she can talk to her oncologist if she does experience bad side effects but hopefully she will be ok.

I have my scan on Monday and am meeting with my oncologist the following Tuesday (10th) to discuss the result. Hoping for the op to be mid March. I've never had a generic anaesthetic so I'm mostly apprehensive about that and managing the recovery with a daughter who loves to be cuddled and still  wakes up in the night and wants to come in our bed. Luckily my husband is great and we have family near by so there will be lots of people to help out.

Please let me know how your mum gets on next week and I'll drop a message here to let you know if the change in dosage has reduced my Cycle 3 side effects but I'll keep my fingers crossed for her  

x

Thanks so much. What are the main side effects you’re noticing would you say? Really good to know all this so I really appreciate you sharing.

Fingers crossed the chemo has done its job to reduce things before your op. If you have any questions about the op, let me know, but the anaesthetic is really nothing to worry about. I went from having no operations ever to somehow having 5 in the space of 3 years and never had any reactions at all, it’s really modern now and you just feel like you’ve had a nice sleep.
Mum has recovered really well, she was super active before surgery and I think it really helped. She was out of hospital after only 4 nights, most people apparently stay over a week.

I did give her my bbhugme pregnancy pillow to help support her sleep post op and she said she couldn’t be without it and is never giving it back! So if you can get hold of one of those, I really think it’s worth it. 
My kids (5 & 7) are obsessed with my mum and were worried about hurting her when cuddling but you make do with pillows and the like which helps. We explained all about the operation and I actually stitched up two tea towels so that my eldest understood a bit more about it! As long as she’s aware that mummy will be a bit sore for a few weeks and she needs to be extra gentle, I’m sure she’ll understand. Kids are fab when they can be helpers too. Xx