My sweet mother currently on caelyx

Hi all. My sweet mother is 76. Perfectly healthy, happy amazing woman, until 2 years ago. She has stage 3c ovarian cancer. Was on Carboplatinum/Pacitaxil drugs all of 2015 with full hysterectomy and debulking half way. Then a year of no treatment. Then back on for 6 months, off 8 weeks, now starting Caelyx. Had first treatment last week and 6 litres of fluid drained. Has felt crappy all week. Mouth sores, itchiness, feels awful. Any advice is appreciated.

[JanePW1965]

Hello. I'm in a similar boat with my mum and she's been through the Carbo/Taxil either side of debulking, for most of 2014. She had a recurrence after six months and had six Caelyx. After the third Caelyx, her hands started peeling and cracking and were so sore. She was using all sorts of creams including udder cream! But in the end, she did have to have the dosage reduced by 20% and she was fine then. So, just keep an eye on your mum's hands, feet and other parts of her body may be affected too. But everyone reacts to the treatment differently and side effects can be so different. My mum was 80 in October and has been battling on since her diagnosis at the end of 2013. Mum was lucky in that she didn't get mouth sores. There is a little bottle in a green box (can't remember name off top of head) and I think it's important to use this to prevent mouth ulcers. Mum also uses a mouthwash which was prescribed at the chemo ward. You could check if your mum would be OK to take anti-histamines. This might improve the itching. I'm sure you will receive some other useful advice from the lovely ladies on here. Sending a virtual hug to you and your mum. Jane XXXX

[Hidden in reply to JanePW1965]

Thank you, Jane. Sounds so similar to my.mum. So hard to see them go through all this.

[Hidden in reply to JanePW1965]

My mom had her first caelyx 2 1/2 weeks ago. She has been really tired and weak ever since. Also had draining twice which is hard to take. Really concerned about her. She was feeling okay, except for the ascites and now feels crappy. Doc told her side effects from caelyx would be way easier than the pacitaxel/carboplatinum combo.

[antheamary]

Hi there, i have had 2 lots of caelyx so i sympathise with your mother. I have acid reflux so taking omeprazole. I have v sore feet so doublebase gel rubbed in is good. I am having a foot massage today as well. I havethrush at both ends so taking tablets. I use a v soft tooth brush. I have a chesty cough voice is rough. I am going away for a weeks holiday before we move house, so i am not giving in. If you could help with her symptoms i am sure it will help her.

[Hidden in reply to antheamary]

Thank you for your reply. She also has acid reflux, on a ppi but belching a lot, it doesn't seeem to help much. Her appetite is poor. My dad is great at encouraging her to eat nice and healthy foods.

[lorraine71-Australia]

Hi. I had Caelyx as 3 line treatment I finished the 6, one every month .The first month great the second month a rush with a bad itch and blisters under my arms Caelyx does not like heat, so she has to keep cool wear cotton cloths as much as possible, I went back to my oncologist as the itch and blisters were that bad she gave a scrip for steroid cream for the blisters and I used moistener on the itch. From then on I had steroids before the Caelyx this help with side effects.

For my feet I socked them in tea tree oil in cold water and moisturized, as for my mouth I did get mouth sores my clinic told me to boil water and put bio carb in it and Rinse my mouth all day and keep it up also you can use salt both are natural antibacterials.

I hope your mum feels better soon talk to her team she can get help for the side effects best wishes Lorraine..💙💙

[Hidden in reply to lorraine71-Australia]

Thank you for the tips, will share with her.

[coalole]

No advice but sympathy. I have just completed bevacisumab treatment after carboplitin and paclitaxol and I have to start carboplatin and caelyx next week.

[Hidden]

There've been quite a lot of posts about this recently, including from me. If you type caelyx into the search box you'll get all the old tips too. You need to press return or it won't work.

I was interested to hear about thrush and chesty cough, voice problems. I too have had these recently. Watch her temperature if she does develop a cough. Mine rose really quickly, leading to the pleasure of a night in A&E.

I think prevention is better than cure when it comes to Caelyx. I managed to avoid most of the problems and found it generally easy. I think the later stuff is down to my blood counts and general lack of resilience at the end of the course.

Good luck!

[Hidden]

My mom had another 7 litres drained today, 6 1/2 litres drained a week ago..she has gone from 123lbs to 105 now, which has been her new weight since cancer. .the caelyx is really draining her, sleepy most of the time, uncomfortable, bad acid reflux, no appetite and mouth sores She felt fine, except for ascites before starting caelyx.

[lorraine71-Australia in reply to Hidden]

Hi , I had posted before I was on single caelyx has your mum talk to her team about her reflux or go to her GP I go to mine at times. it can be hard but manageable with the help of your team, also I had steroids before each treatment this helped a lot, is she given steroids before treatment? I'm sorry she is having a hard time it's good you are there to support her sending my best wishes to your Mum...Lorraine xx

[Hidden in reply to lorraine71-Australia]

I will mention steroids, when she goes for bloodwork two days before next chemo. Good idea, thank you.

[Hidden in reply to lorraine71-Australia]

Hi Lorraine. I told my mom about you today. She felt bad about your fall, but I think it was good for her to hear what you have shared so she realizes she is not alone. Nurse came in today for an hour and a half visit. Wanted to go over all her issues and work through possible changes in treatment. Mom is going for another ascites drain on Friday. Bloodwork Tuesday and 2nd caelyx chemo on Thursday. We are going to discuss having a port put in her stomach for easier draining as she fills up so fast with ascites. She was encouraging my mom to eat small high protein snack like meals to keep her strength up, as her appetite is poor, due to fluid. Also to try gaviscon instead of tums to help with bile/reflux issues. The panteprazole doesnt seem to help at all. Also for her headaches she is to take advil with tylenol and see if that helps. The house is set nice and cool and she is wearing loose fitting cotton clothes. Resting a lot as she is tired. Such a dear sweet mama. Her nurse is amazing and cares a lot. My dad is great at looking after mom too.

[lorraine71-Australia in reply to Hidden]

Hi ,Your Mum is having a hard time but it's good you are supportive and hopefully her team will be able to get her on a treatment plan that will help with her symptoms. When your mum goes for her 125 just to let you know caelyx is slow, I did not see any results till 3 rd or 4th then it went up then went down, remember we are all different so will react to chemo in are way. I hope she feels better soon and let her know she is differently not on her own.Give her my best wihes from down under..Lorraine xx💙

[Hidden]

Mom had bloodwork today. WBC was good, iron good and electrolytes good. Protein low and doc is concerned about that. She will not have 2nd caelyx treatment this week. I am glad. She has been feeling poorly all four weeks since first caelyx infusion. Dizzy and weak, mouth sores, headache and had 3 ascites treatments which took 6.5, 7 and 5 litres off her tummy. Dad is really good at encouraging her to eat and takes care of her. They are both exhausted. Went shopping to pick up greek yogurt, frozen yogurt, supplies for smoothies etc. Tough to see her not well. She did quite well on first two chemo rounds but not this caelyx.

[Hidden in reply to Hidden]

I found smooth home made soups and packets of miso soup kept me going. Same idea as smoothies...good way to get protein in indirectly: lentils etc.

[Hidden in reply to Hidden]

Thank you, good idea as she enjoys soup.

[Hidden]

Mom just had her 2nd caelyx chemo treatment yesterday. She had it six weeks after her initial treatment as she was slammed with side effects (thrush, peeling fingers, headaches, extreme fatigue, dizziness, low appetite etc) 3 ascites drains and low protein levels. Doc reduced her treatment by 20% so we hope her side effects are less. The good news is any remaining ascites dried up, so the caelyx must be doing some good work. Here's hoping for a good four weeks before 3rd treatment.

[lorraine71-Australia in reply to Hidden]

Hi, Good news on the up date give your mum my best wishes ..Lorraine xx

[Hidden]

Mom has had a good three weeks after her 2nd chemo treatment on a 20% reduction of caelyx. She was slammed really hard after full dose. Today she was able to attend a theatre performance with my dad. They have had a good few weeks in their gardens, going for walks and drives. Her hair is returning nicely too.

[lorraine71-Australia]

Hi Love, I'm so glad to hear your mum is handling the Caelyx and it's helping her with her ascites, I hope it only gets better with each treatment..give her my best wishes Lorraine xx

[Hidden]

Hi all. I just got off the phone with my mom. My mom has had a good summer after a rough month of June and feeling ok, but CT scan has shown cancer now spread to liver. Doc said not many options left. Please pray. Much appreciated.

[badger4218 in reply to Hidden]

God Bless Sweetheart. Gentle, healing thoughts for your lovely mom from across the pond. It is so hard watching our loved ones journeys through this wretched disease, please make sure you are taking time to look after yourself, mom needs you strong, I hope you have folk pitching in and sharing the load with you. . So glad she enjoyed her summer. In my thoughts, will keep you both there, God Bless. marie. x x

[Hidden in reply to badger4218]

Thank you so much. She is so dear and precious. Next Thursday specialist will do a conference call with us. He said 'maybe' there is a clinical trial. She and my dad need to discuss it all too. She has fought a good fight and been positive as she can. A true warrior. My one sister also is quite helpful. Dad is having knee surgery Oct 2, so will be moving in for a bit. Thankful to have time with my parents. My hubby and kids are home are supportive too.

[JanePW1965 in reply to Hidden]

Sending hugs and I hope there is more treatment for you Mom. Mine had a CT scan a few weeks ago and the latest Carbo/Taxol has shrunk the tumours again and we're hoping for some stability for a while. It's a roller coaster ride isn't it. I hope your Dad's op goes well. I'm heading down to stay with Mum for the first week in October as she is 81 on 4 October. We're having a family get together. Time is so precious isn't it. Love Jane XXX

[Hidden in reply to JanePW1965]

A true roller coaster, good analogy. We thoughtbsince she was feeling good that she would get good news. Poor little mommy. Gotta stay positive for her.

[Hidden in reply to JanePW1965]

When mom was on Carbo/Taxol it shrunk and CA125 went down too. Then she was off treatment for six months, then it all came back and she had full blown ascites. Now on caelyx, feels good, ascites gone, but tumours growing. A hard thing to treat, that is for sure. Part of me thinks to carry on with caelyx as she is managing side effects and no ascites and hair loss which are two biggies for her. Slept poorly last night, praying and trying to sort it all out.

[badger4218]

Oh Bless her. I,ll keep fingers crossed for you that there,s a trial suitable. It,s been a tough few days around here, we lost one of our ladies and it seems to have really hit some folk hard, myself included, even though we,d never met. It,s like a vast vacuum , or cavern has opened up, she was such a selfless, thoughtful soul, always taking time to respond to people even being so poorly herself. This illness all just seems so unfair. Odd, it,s totally knocked me for six, I found myself stopping at an old church this morning that I,d often just driven past and lighting a candle, I.ll light one for your mom tomorrow if that,s o.k ( well, today now, it,s 2.30 here, not been sleeping ) with you. You sound like quite a tight knit, supportive family thank goodness for Dad ,poor chap what a time to need an Op himself. Best wishes for Thursday I,ll be thinking of you. marie. x x

[Hidden in reply to badger4218]

Thank you Marie. I appreciate all the love and support here. Prayers and lighted candles too. God bless!

[JanePW1965 in reply to badger4218]

Such a sad loss wasn't it Marie. I know I'm on this site because my Mum has OC but I've been on here a few years now and I feel so close to all the ladies and the support has really helped me. It is so sad when someone loses their fight. I have to say I cried when I read the news. Sending hugs. Jane X

[badger4218]

God Bless love, Nite, keep us updated. x x