Hi there, I've just joined up on here and I have been reading many of your posts and have been very impressed by the positivity and helpfulness on here! I was diagnosed with Grade 4 Ovarian Cancer in February this year. I had a weekly cycle of Carboplatin and Taxipaxol 1st week and then the other 2 weeks just on Taxipaxol. I also wore the cool cap and kept my hair! Anyway when I had the scan nothing changed so I'm now on my 3rd cycle of Carboplatin and Caelyx and am feeling very well I'm due to have a scan in 3 weeks time and feeling quietly confident! I was misdiagnosed last August as I had an aching left leg which the Dr put down to wear and tear in my back after a CAT scan. It was when I had a reoccurrence of severe depression and my white blood cells were low that another Dr sent me for a scan which was how the cancer was discovered! Since then, the leg pressure is gone and I've been feeling fine! I wasn't too good on the previous regime of Carboplatin and Taxipaxol but I'm hoping that I can complete the next 3 cycles with good results! I carried on working as an Avon Lady and in May we went to see my son in Peregian Beach, near Noosa, and last weekend I went on a Ladies Retreat so still living life to the full! Talk to you all again soon, Lovely Ladies! By the way, I live in South Australia!🌺🌺
🌺New To Forum!🌺 Grade 4 Ovarian Cancer, but ... - My Ovacome
🌺New To Forum!🌺 Grade 4 Ovarian Cancer, but feeling Very Well!😀🐞🌻
Welcome to the forum. I’m obvs sorry you had to be here but I’m glad you think it is helpful and supportive. I find it so,as well. I’m in England. Hope your gut instinct is right and that this regime is working for you.
There is always someone on here for each other.
Take care xxx Netti xx
Thanks Netti! We can chat on here on a down to earth basis here as women, rather than rely on our oncologists, and share our experiences! Take care, talk to you again soon! Dawn!🌺🌺🐞
Hi (sorry, don't know your name) and also welcome to the mad house. As Netti said, not the place you'd choose to be but we are all here for each other and with each one of us having different levels of cancer, different treatments, different reactions etc etc there's always some excellent advice and support for you. I am in France and to be honest, I wouldn't have got through this last year without my teal sisters here. Take care and the very best of luck to you. Kryssy xxx
Thanks Kryssy, my name is Dawn! Tried not to make my post too long but it didn't work out that way! Anyway, I'm pleased to be on her and have the support and chats etc akth many wonderful ladies! I'm also waiting for results of BRACA1 blood test, if its positive I get to take tablets! All the best, talk to you again soon!🌺🌺
Welcome to the party 🎈
This is such a lovely place to be. Lots of help and advice just when you need it
LA xx
Hi lovely, As my friends have said welcome to the mad house, party and just generally one of the best places you could be! We’re all a very friendly bunch here to offer any advice we can with our own individual experiences. I’m a career but have made some lovely friends on here. Their advice has been the best, in most cases better than my special persons oncologist xxx
Hi Dawn , glad you found this group , I haven’t been here long but the knowledge I have gained plus the support is great . I feel you can say and ask here things that perhaps you can’t ask your loved ones because supportive as they are , they don’t get the nausea, constipation, skin reactions etc like the teal sisters.I hope your treatment does the trick and gives you a long remission .Julia xx
Hello and welcome - lots of support and information to be had here - sometimes only those in same place really get how hard this can be xx
Thanks!🌺🌺
Hi Dawn,
Welcome to the club! There are many ways we help each other; you have already helped me by saying that you are well on Carb/Caelyx. I’m going to start that regime soon, so it’s good to know it’s manageable.
Hope all is well with your next scan,
Best wishes, Ali x
Thanks Ali! Also my advice is to use the Cool Cap as I've used it from the start and kept my hair! All the best, talk to you again soon! xxDawn!🌺🌺🐞🐞
I shaved my head after my first line chemo and have kept it short ever since - it’s very easy to manage. If my hair starts to thin this time as threatened, it’ll go again. My friend has bought me a beautiful red Chanel lipstick so I’ll just wear that instead !
hi I am quite new to this forum and i have found so much help and kindness from people i dont know it has given me hope and a strength i didnt think i had xxxxxxx
Pleased to meet you on here Amanda!xx🌺🌺🐝🐝
Am I ask if you used the Paxman scalp cooling system through machine. I am due chemo next week doing coolcap and was reassured by your positive result.
Hi, yes, right from the start I used the Cool Cap and continuing it throughout treatment as I have kept my hair! The Dr did tell me I wouldn't need it with the Carbo/Caelyx, however as there's still potential for hair thinning I'm continuing to use it - no point in losing hair at this stage, and, like I said, feeling well in this regime! I have a scan in 3 weeks time so a little nervous but as I'm feeling so well I'm quietly confident! Can I ask if this is to be your 1st lot if chemo, or a subsequent one? Good luck with your treatment and I'll speak to you again soon!
Take care, Dawn!xx🌺🌺🐞🐞
Hi
This is my third line 3c high grade serous. Done carbo/taxol lost hair done carbo/doxil kept hair. Now doing taxol 18 weeks will definitely lose hair. Decided to do cold cap the thought of going back over two years is depressing me my hair is a lovely length again and never felt so good.
Anyway have you any tips to make the cold cap doable . By the way carbo doxil worked very well for me and got my disease stable. Hop e it does better or same for you Good luck
Hi Mlowery I'm using the Paxman cold cap system and my tips are
a) take your own conditioner with you (they dampen your hair and place conditioner on it before fitting the cap)
B) make sure the cap fits really snuggly everywhere or you risk the friar tuck look 😁
C) take a nice warm blanket as even in this recent heatwave you get chilly and need to wrap up!
D) have a big wee before you start as going to the loo needs to be quick and with chemo drip and cold cap trailing it’s not easy!
E) if you can do some distraction techniques it helps get you over the first 5 -10 mins where it’s a little uncomfy it also helps to have your pre meds during this time as the Piriton takes the edge off the cooling process 🤪
F) try and stick with it for the first 5-10 mins and after that it’s fine honestly!
G) don’t wash your hair for a couple of days after I just rinse it with warm water to get the conditioner out the day after. I try and only wash it twice a week and don’t use a hairdryer or straighteners on it
Hope these tips help I’ve had 6 doses of weekly taxol now and still got all my head hair so it’s working and it’s meant I feel better at work and at play xx
Good luck with treatment x
Bev
Hi BeeWild
Thank you for replying. My team have now let me go to centre who have the Paxton system. This centre is smaller and I know I will get more help and support in trying the cool cap. A nurse friend of my daughter also suggested this system. I know it’s not quaranteed but I just need to give it a go. Can I ask if the symptoms are tolerable and easier than front line. Good luck for the rest of your treatment best wishes maureen
Hi again, just wear the cold cap, I've never found it to be any trouble and its certainly well worth it to keep your hair! It's not a fashion statement you'd want to promote but its certainly done/doing the job for me! My advice is to wear the Cold Cap during ALL chemo treatments! Good Luck, speak soon!xxxDawn!😀🌺🐞🐝
Welcome to the club that no-one would want to join but they're glad it's here for them. All the very best for your treatment. Keep goung with the grit and determination you obviously have.
Sandra 💐💐 xx
Wishing you the best of everything, you sound very positive,and this is a fantastic site, though sorry you had to join xxx
Welcome! I have recently joined here myself ( although through 3 treatments 2 ops etc since my diagnosis in 2015) this is a great forum and I have ended up in a great hospital up in Manchester UK. Because of the kids madness of one of the members here (thank you so much again Beewild!) the advice is so amazing and sharing helps for sure. I did Caelyx / Carbo recently and although it wasn’t for me it also didn’t mean I lost my hair ( it didn’t even thin!) so if you want you cld lose that cap if it gets too chilly! So hope it works for you - it has been brilliant for so many - I send a big warm welcome to you!
X
Thanks Hopefulgal1, can I ask how you went on carbo/caelyx? I'm hoping for good scan results in 3 weeks as feel so well!😀🌺🐞
Well done you! I think we know our bodies well so hoping this means it’s doing you good. It was hell for me each month and ended in A&E each time for something different so it should have told me that it wasn’t working! But for others it’s beem fantastic so hang in there as you feel good on it! I am sure they are monitoring your CA125 and will scan soon and then you will know more. Each of us is very different ... I didn’t like Caelyx at all but ignore that as you are obviously doing well on it! Good luck xxxx
Welcome Dawn. You've made it through a number of treatments already. Well done.
Love your picture.. it radiates positivity. Wishing you a long remission and luck with the scan. Maus
Hi there and welcome. We're all here to help each other and come from all parts of the world. Anything you worry about or want to know, they'll be someone here that can help you. It's not all doom and gloom either. We still live our lives and have some fun between all the ups and down of the medication.
Best wishes with everything. Zena xx
Hi Dawn. When I began carbo/caelyx I asked my onc if I would lose my hair. He said could be 10% hair loss. I have very fine hair but have to say that, altho I could tell I'd lost just a little (after 6 months), it wasn't noticeable to anyone else. You may not need that coldcap. Best wishes. Pauline.
Welcome Dawn. I am in the US and its great to share experiences and how, at times, things are done slightly differently bringing new thoughts and suggestions to my onc and team if needed. I had both your treatments and found them tolerable (my institution did not offer cool cap but I did not lose my hair, it just thinned A LOT) and no thinning with Carbo/Caelyx. I had a good feeling too and the scan proved me right. I am on a PARP now and just had my first scan this past Monday so hoping to post something good when I find out on Friday if all is well! Continued luck to you and hope your scan is how like how you feel! Judy
Welcome Dawn. I am sorry you are not seeing results but hang in there. if there is anything I have learned by being on this forum with these great gals in that there is no one treatment for all. What works for one will not work for another. there is always hope and due to all these brave women on trials we have more and more treatments around the corner.
Xx Carol
Hi, I'm in California, I have stage 3c ovarian cancer, clear cell. My friend was just diagnosed stage 4, but hasn't had surgery yet. She's at the beginning of her journey. I don't know if you could do stomach wash chemo its also called intraperitinel chemotherapy. It's supposed to extend your life. Best wishes and prayers for you, keep a positive attitude its key. ❤❤❤Liz
