Hello, my mother was recently diagnosed with stage IV high grade serous ovarian cancer and has just completed cycle 2 of a 6 part carboplatin/ taxol treatment. I am her daughter and care for her. The Oncology team originally said it was inoperable due to the spread but have now said this is dependent on a review and scan after chemo cycle 3 (which we are nervous about but have decided not to think about it and to just take 1 day at a time). Her main symptom has always been ascites. I have been reading up on this forum and the incredible advice and support that is offered in this community and wanted to ask the following questions on behalf of my mother:
1. She has so far had 3 drains and though the fluid is no longer increasing, it is still not draining after chemo 2 so she still has a big belly synonymous with ascites. I was just wondering to those poeple out there who have had ascites, when the fluid started going down and whether the feet were also swollen as my mother's feet are also swollen which has reduced her mobility and she is normally a very active person.
2. My mother has also started losing her hair from the chemo. Will it fall out in patches so that she will eventually need to level it out? Also, if she shaves it, will the short hairs still fall out?
Hello, I am so sorry to hear that your mum has serous ovarian cancer,unfortunately I cannot help you with the ascites,but I am sure someone else will reply on here as there are many ladies who are dealing with this. I lost my hair about 10 days after the first chemo session,but before this I made a decision to get my hair cut really short,which I though helped. My head itched prior to the hair coming out & a majority of mine came out all at once,then my daughter just shaved the remainder off. I dealt with it much better than I thought & did get a wig for wearing when I went out,although first of all it is all about confidence,but after the first time of going out I found it much easier,& most people had no idea I was wearing a wig. I found also that my eye lashes & eyebrows came out, but they came back really quickly. I to have serous stage 2 grade 3, & in September it will be 2 years since I was first diagnosed, & my treatment finished end of March 2016, & now have a full head of thick hair.
I would like to wish your mum well with her treatment, & as you said yourself take one day at a time & please stay away from Dr google as there is a lot on there that is out of date.
Thanks for your kind words Caleda and the useful advice about the hair. My mum is actually quite relaxed about the hair loss as she has short hair anyway and she says at least it doesn't hurt when the hair falls out, unlike the needles! I think it's more difficult for me to watch as the hair keeps falling out and I want to help her in anyway I can. It's comforting to hear that your diagnosis was 2 years ago and that you are still going strong.
This is a very difficult time but your mom is lucky to have you by her side! I had a lot of ascites at initial diagnosis. That is what led to me going to emergency room (I am in US) and ultimately diagnosed with cancer. I had an initial drain and at that time they did the biopsy of the fluid. But it did come back and then some at first. I don't remember how many chemo treatments I had before it started to go down. But it did. And it will for your mom too. In fact I have never heard of it not going down! I'm pretty sure it was during my second cycle, probably around 4th or 5th treatment. I weighed myself daily so once it started going down I could see it was a little every day! I too needed chemo before surgery but it worked well and shrunk much of it so was able to have a successful outcome. I'm not sure how they confirmed and staged your mom's cancer without surgery. I know they confirm peritoneal cancer based off ascites biopsy but typically the ovarian cancer diagnosis and staging comes after surgery and further pathological analysis. Either way- It sounds like your mom is on her way with treatment. Just so you know- I had 3 1/2 cycles of chemo then surgery then 3 more cycles. Just finished 2 weeks ago and my scans are all clear! In remission. Its a long road, often bumby. But have the faith- your mom is on the right path. At some point you may want to consider genetic testing so you can be sure you don't have the genes associated with this cancer. Best of luck to you both! And come back anytime. The women here are an amazing support system filled with knowledge, guidance and lots of love.
Dear Anne, the Oncology team have said that the ascites will go down as the chemo starts to take effect and in actual fact, by this point, she would have had to have another drain so you are right, I think it will go down eventually. I think sometimes, when you're living with it/ affected by it, the progress seems so slow and you just want to hurry it up. Sometimes, I just feel so helpless. It's comforting though to hear that you are in remission. Also, you are completely right, there is an unbelievable amount of knowledge and support in this community and it's so encouraging to hear from people who have gone through the experience firsthand.
I'm a newcomer myself and never had ascites so I cannot help with that.
I had my hair shaved into a GI Jane buzz cut before chemo and my hair fell out on day 16, after my first chemo treatment. It was patchy for another 10 days but all fell out after the second treatment. I kept rubbing it off with a towel. My eyelashes are gone and my eyebrows have thinned a lot. I didn't want a wig because I thought I would feel like a fake version of myself. Having said that, one needs to have the confidence to walk around bald and the downside is everyone assumes you are ill. I go to the gym everyday and get sweaty Spinning so everyone is pretty used to me walking around bald. I do often catch a person looking at me for a second too long if I'm out shopping but I'm getting used to it and don't even think about being bald unless it's a cold day and my head is freezing.
My Nurse told me a lot of people buy a wig and start wearing it before their own hair falls out. Some try a new style and others buy the same style as their own natural hairstyle so no one knows they are ill.
Hello JJ56, many thanks for the advice and sharing your experience with hair loss with me. It's comforting to hear from someone who has gone through the same emotions and know that we are not alone. As you say, I think a lot of it is to do with confidence and the prospect of people starring - I don't want my mum to be hurt (even emotionally) anymore than she has already been. Do you mind I ask how you took care of your head, especially with summer coming? Did you still wear a hat just in case of sun burn etc? I hope you don't mind the stupid question, I'd feel too embarassed asking the doctor!
Factor 50 sunscreen is a must for all exposed skin including scalp. Put it on frequently - it protects and you can even get a tan! Yes even with factor 50
I had 5.3 litres of ascites drained in Feb. This must be carefully done under ultrasound guidance to prevent perforation.
Mine came back and I have a huge swollen abdomen. It generally does go with chemo however because I am on a low dose chemo (due to my health) mine is not reducing and I can't have another drain because of the risk to me of bowel perforation. I can only wear my pyjamas or 1 pair of trousers which were massively loose around my middle but now I can't close them!! I have an elastic band through the button hole and in over the button- with a 3inch gap!!
Many thanks for the advice Clare - there are some things I feel too embarrassed asking the doctor so this is a great forum to do so. My mum is not too uncomfortable at the moment with the ascites, though she has been in the past. Your pyjama/ 1 pair of trousers issue is a familiar stoy in our household too you will be glad to hear. I have though, bought my mum some extra trousers, which are 3 sizes up just to cheer her up. Maybe you should do so too, it's a good excuse to shop!
I know how scary this time must be for you and your mum as was in a similar position when diagnosed last year.
I was diagnosed stage 4 high grade serous OC due to ascites , after a laparoscopy whilst on holiday in Mauritius. Was also told inoperable due to spread and needed chemo to work . Remember being in total shock and frightened to think about the future. You are right to take one day at a time and help your mum deal with the chemo . High grade serous normally responds well to 1st line chemo so stay positive . My CA125 was 3880 when diagnosed and this came day each treatment . I had 3 chemos , my scan ( yes very nervous getting results ) which confirmed cancer had shrunk and radicle debulking after my 4th chemo in Nov . Then 2 more and am now 4 months post chemo and NED ( no evidence of disease ) .
So am just about to celebrate a year since diagnosis and although it has been the worse year ever in lots of ways there has also been some enjoyable times and am so grateful to still be here.
I hope and pray your mums treatment will be successful . There is lots of advice on here re dealing with side effects of chemo and remember to discuss any issues with your mums CNS nurse . There are lots of meds that can help eliminate side effects . You have already had good advice re hair loss . I wore a cold cap and kept most of it but had a great wig on standby .
Sending lots of love and positive vibes . Remember to look after yourself too !! Love Kim X
Sorry also meant to say the chemo normally deals with the ascites. I had mine drained twice before Chemo started as was so uncomfortable .Maybe check with your mums team regards her swollen legs . Love Kim X
Hi Kim, your story is incredibly similar to my mum's so far (except for the part about being in Mauritus!) so I'm so glad to hear that you are now 4 months post chemo AND NED!!! This gives me a lot of hope, especially when even the thought of being post chemo seems like a distant dream right now. I agree that there are some difficult times ahead but my mum and I, along with my sisters really do appreciate every second that we have with each other now and cherish the laughter's that we have.
Hi, my chemo buddy had to have chemo before surgery. She had a lot of ascites and had to be drained to make her more comfortable. If I remember correctly (it was coming up to 4 years ago), she was drained on 3 occasions, each time on the morning of her chemo. After her 3rd cycle it never came back.
Also don't be too disheartened if they say after the scan that they can't operate. She was told this but once she'd completed all 6 cycles and rescanned, she was called for surgery at that point. Never given up hope.
With regards to hair, mine came out gradually at the start but by the day of cycle 3 it was coming out in clumps. I couldn't cope with the hair falling all over me so I had it shaved off. The hairdresser at the hospital did it that day when I'd finished my chemo treatment. I was told that they take it back to a No 2, no closer as a wee cut could get infected which in turn would delay future chemo. Yes, the wee hairs do fall out too.
Hello Ann, thank you for the advice and so glad to hear about the prospect of surgery from another perspective which I had never thought about. My mum's 3rd cycle is in 2 weeks and I guess it takes a while for the chemo to take effect and then the ascites to go so we shall see what this OC journey throws up next! Thanks you the advice regarding the wee hairs. Again, another question that I wouldn't feel comfortable asking the doctors because it's such a small thing in comparision but feel very safe doing so in this forum.
My mum is stage 4 and also diagnosed following ascietes being drained. She had this done twice and then started chemo And that was the ascietes gone. Her hair fell out all over rather than in clumps. She had 6 chemos followed by hysterectomy/debulking and then 2 final chemos. We have just found out her scan was clear.
Mum's hair started to grow back quite quickly following her last chemo before surgery (28.12.16) so she was disappointed it fell out again when she had the two final ones.
Hi MissEd, I'm so glad I posted on this forum since it's a familiar pattern I'm hearing from everyone that the ascites will go as my mum goes into cycle #3 of chemo.
I was diagnosed with stage 3 high grade serous in June 2016. I had ascites and had 9 litres drained and three weeks after that another 5 litres drained. I started chemo a few days after the last drain. The ascites didn't come back.
I started losing my hair two weeks after the first chemo. My head really felt tender. My partner came home from work one night and said I looked like a manky cat and shaved it off. Was traumatic. I thought I looked like an alien.
My last chemo was January this year and I'm now in complete remission.
My hair is growing. It's very short but I'm having it coloured tomorrow as I don't like the grey.
Wishing your mum all the best in this horrible journey. We are all here to answer any questions and give advice and experience stories. The ladies here are lovely. Xxxxx
Hi Suzanne, thank you so much for sharing your story and I am SO, SO, glad that you are in remission. It does seem like after chemo, the ascites should not come back. Can I ask how soon after you started chemo did the fluid subside? was it after a few cycles? I think you are completely right about the ladies in this forum, they are very helpful with advice and there is such strong support.
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