Hi! I'm new here and was just diagnosed with ovarian cancer. I had a partial hysterectomy in 2012. I started having pains in my right side about 3 weeks ago. Long story short, CT and ultrasound revealed a 7cm ovarian mass. After my CA125 came back normal (a 21), they removed the mass. Doc called me the next day & said cancer was in the ovary. Saw gyn/onco, had another CT, I'm having a MRI tomorrow for suspicious spot on my kidney. Going for surgery Monday to take biopsies & lymph nodes from the area where they removed the ovary. Doc said I will start chemo shortly thereafter. I will be on Taxol/carboplatin. Looking for any advice from anyone starting on this type chemo. Is the first round tough, does it get worse as far as side effects with each round. I have a treatment every 21 days. They won't know the stage of the cancer until they take lymph nodes/biopsies. Thank you so much for any insight!!
Newly diagnosed with Ovarian Cancer: Hi! I'm new... - OvaCare
Newly diagnosed with Ovarian Cancer
I'm sure the replies will flow soon, but I wanted to respond as, if you are in Europe you have had a sleepless night ! My mum has OC so I can only comment from a second had point of view. She was much worse that you - it seemed she had half her insides removed! Even so , she coped with chemo! It wasn't the most fun 18 weeks of her life, but in her case she was so ill pre-chemo that we could actually see her get better with each round. If you are going into this in reasonably good health , I'm sure you will cope better.
The taxol causes hair loss. Mum didn't find this devastating & we all got used to it quickly. She was expecting to buy .a wig privately, but was pleasantly surprised by the nhs choice. She wore cotton scarves at home when it was very hot. She had her eyebrows temporarily tattoos on, but I'm not sure that she would bother with that (with the current fashion for dark slugs , it was very difficult to persuade the tattooist that she wanted subtle!). She was not sick & didn't need to take the anti sickness, tho she did get extreme fatigue. She got some neuropathy in her feet. Report any symptoms back to your team as they may be able to tweak the drugs to lessen the effect. Finally, Mum found she was bouncing off the walls for a couple of days after as the intense steroids took hold. Her real chemo side effects didn't kick in for 2 or 3 days.
All women react differently and so I'm sure you will receive reports of other reactions. Just keep your medical team posted of any matters of concern. Good luck with the treatment & best wishes for your next results.
I am so thrilled to hear from so many ladies and their experiences. Thank you for your reply and the welcome! I love this site already! It is so helpful & encouraging to me. Blessings to your mom and you as you are helping her through her sickness! I appreciate your insight so much! A quick question about the posts if you know. If I reply to the entire post will everyone that has replied already see it or do I need to reply to each post separately? Like if I have other questions that arise, should I start a new post, reply to the current post or reply to the person that replied to my post?? LOL Sorry for the questions. I guess I picked on you for this one!! haha! Again, thanks for your help and take care!!
Hi, and welcome to our forum. You will get lots of support and advice on here.
I am currently going through chemo at present, same type as you are going to get. There is a list of side effects from each drug and your oncologist should go through these with you but not everybody will have them. We are all different.
You will however lose your hair but remember, it will grow back again and just think of those positives - no waxing, shaving or plucking for a while lol.
A !title tip for chemo days, wear something comfortable, leggings or track suit trousers, no zips or buttons to deal with when you need to go to the loo, remember one arm is going to be attached to a drip and stand.
If you get a metallic taste, fresh pineapple helps to relieve it.
Take it easy and listen to your body. You'll get through this. Good luck, let us know how your getting on. Ann xo
Otis daunting starting chemo but you do cope. Take a day at a time and don't push yourself. Take all the tablets they give you for side effects and drink the 3 litres of water daily. Take any help offered by friends. I had a no hug policy for the days when blood counts would be low to avoid catching anything from anyone as its so disappointing if you arrive on chemo day to be told you can't have it due to infection. Try also to keep a sense of humour in the chemo ward the nurses are great. I actually quite liked being bald and enjoyed feeling my head very soft, use plenty of factor fifty when outside even on a dull day as the chemo reacts with the sun. I also took up knitting to keep sane and allow myself to sit and rest but do something useful. All the best.
Your post gives me hope. My biggest fear is chemo and losing my hair. My hair is very short and I'm just nervous about "the look" that will happen. You never know, I may love it like you said. I am staying positive and having faith that "this too shall pass" and it will all be a memory one day and with my experience I will be able to help others! Thank you for your input. It is most appreciated! Take care!
I had a hairdresser friend come to my house to shave my head we made a bit of a party and took video and photos and I felt I had taken control and not that cancer controlled me. Your head will be as soft as a horses mouth it's rather special so don't be afraid. They say folk cope best in life when we embrace change and run with it rather than thinking back to the past. My hair grew back thick and curly that too was quite a novelty. Take lots of photos to make memories both of good days and bad and you'll be surprised how well you will cope. Find your local cancer support centre and make full use of their services for both you and your family. I'm 8 months finished treatment and did a walking to fitness program and now paddling with the dragon boat team with my support centre.... Life isn't over, just different, enjoy everyday and I found even on a bad day I could find something to be thankful for. Things aren't usually as bad as you think, the body is a marvellous creation and we bounce back😀
I am reading your post here, and I find it very inspiring. I agree with the Cancer Support Centre, I am lucky to have access to one in Cork. I dont do the Dragon Boat as I know I would end up in the river. But I am in a Choir which is less strenuous and safer for me. I also do Mindfulness at the moment it is monthly as I have finished the weekly course. Finally if you are around Cork, dont forget that Ovacare Patient Day is tomorrow at the Clarion Hotel at 9.30am. These Patient days are very valuable to those on treatment for OC and those who are in remission, Have a look at the Ovacare page and see the Agenda for tomorrow,if you are near enough to attend. If you are further up the country no doubt there will be another one in Dublin or Galway in the Autumn. Best wishes
Thanks I live near waterford and get help from the Solas centre there. Had teleology, counselling but really benefited from the structured walking program strides for life which gave me confidence to say yes I can instead of no I can't. Meeting with others on a cancer journey is encouraging. If I get a recurrence I want to be able to look back and say I made good use of my time. I have a strong faith, and as a Jehovah's Witness I have had such great support from other members, but agree meeting with others who have walked a similar path is very encouraging. I'm not on Cork but wish you all a good positive day😀
Ah that sound good, I would have been the last person in the world to go for help but I found it was the best thing I ever done to be honest. I have read a bit about Solas, they do great work too along the same vein as Arc up here. Ovacare is Cork based but also have connections all over the country. I find it good to meet with others who are going through the same thing, you feel that they understand you and vica versa. At patient day, they have talks from a patient, an oncologist, a gynae, welfare issues and a patient story. Also there is an exercise in Mindfulness set for tomorrow. Chat soon again
Yes we can equate with the tv ad that shows a person with cancer in a room full of people then they all go grey and the cancer patient feels totally alone before being brought back to reality by someone helping them along. Arc and Solas and similar places give that helping hand and I encourage everyone to make good use of them and also to try and repay the kindnesses shown so when we feel stronger ourselves to help others to cope. You are very good on the forum so keep it up. I know it's a hard thing to keep dealing with once you are on the merry go round of treatment and I'd like to hope that when it comes my way again I can learn to cope. I have stage 2a so there is a glimmer if only very slight that I may do ok at least for a while. I now try to get out walking most days, paddle other days and juice every day, and enjoy the simple things.. life is good😀😎
What is Cork, Arc, and Solas? I guess it maybe the area your in and the Cancer Support Centre in your area. Just want to check. I need to check in my area for this for sure. Thank you both!! Blessings!
Ha ha Cork is a city here in Ireland! Arc is the support centre there whilst Solas centre solascentre.ie is my support place in Waterford. Do find your local place. Wishing you all the best😀
Hi I am starting my first round on Monday the same drugs as you, I have decided to try the cold cap it's supposed to help you keep some of your hair. I have heard it can be painful for the first 15 mins so they said the will give me pain killers.
I am going to give this a go, if I find it too painful I will stop.
I have only been on this site a couple of weeks and the wonderful support I have had has really helped me, good luck with your treatment we are all here for you xx
Ellsey
Hi, sorry you find yourself here but it's a great place to share, get advice and help others. I was given my diagnosis on 17th March 2016, following surgery to remove my complex mass ( 9cm X 8cm X 3 cm) on my kept ovary. It was part solid, part fluid with multiple internal thick walls. I had nearly 2 months of tests and scans all on the fast track cancer timeline before having a total abdominal hysterectomy, Omentectory and removal of appendix. As the frozen section sent to pathology during surgery did not identify any cancer cells none of my lymph nodes were taken or investigated. My cyst had ruptured during surgery.
I received a telephone call from my surgeon on 17th March and was told I have clear Cell ovarian cancer. Staged at 1C and Grade 3. My last CT scan showed a lesion on my liver however another CT scan will be taken once I've finished my Chemo to see if there is in fact a wider spread - I remain positive that I am 1C!
I am also having 6 sessions of Carbo and Taxol- one every 3 weeks, the first one was on 5th April, be prepared for approx 6 hours hooked up: the saline flushes before, between and after the drugs add the time. My hubby came with me for the first one but up ill go on my own for the rest, although I will be dropped off and picked up as the piriton made me tired.
I was told that I would feel good fir the first couple of days whilst on steroids but I didn't! I didn't feel good or bad just a bit off. Days 4 and 5 were very bad for me with awful sickness - IF THAT HAPPENS TO YOU RING YOUR UNIT,! I didn't do that and suffered as a result. I was too ill to ring and my hubby didn't realise he could. Although I was given anti nausea tablets to take "as required" from day 4 onwards they didn't do anything for me. If I'd rung I would have been told to stop those and go back on the other ones given for me to take on day 2 and 3. The main thing is if you feel ill then RING.
I had my shoulderlength hair cropped to a pixie cut before my first Chemo and I love it. My hair started shedding three days ago and I'm going to get it clipped to a grade 2 hopefully today. I chose a fab wig which I picked up yesterday, I'm going to get the fringe trimmed by the lady who specialises in wigs etc, her number was given to me by the hospital hair loss nurse. I've bought lots of scarves and have experimented to find the best look for me.
Have a look at my profile for more detail and you can also see my posts, I'm a bit ahead of you for treatment and you may find that helps!
My chemo started 4 weeks exactly after my abdominal surgery (TAHBSO) and that has caused a few more abdominal twinges, slight bleeding and discharge but it's all manageable.
Take care, stay as positive as you can to lesson your stress - that is really important. I remain 98% positive with an occasional wobble - they're allowed too!
Look up the Look good Feel Better UK SITE to see if there is a workshop near you, they run workshops for make up and give a goodie bag which is great. I don't wear much make up but am now making a lot more effort which makes me feel better. If there is no workshop near you then you can buy a DVD with loads of tutorials on, from make up, drawing in eyebrows, scarf wearing etc.
Take care
Clare
Hi Clare,
I'm a cancer survivor. Had my 10 hours surgery 13th of March 2016, finished chemo end of August 2015. Had oc stage 3c. Went through the hell. You can read my story on website hairlessbeauty.ie
2 months ago I set up my business providing headwear for cancer patients. I had a problem to find something nice to cover my head when I lost my hair. I've decided then that if I'll get better I will start to provide headwear for other ladies who are coping with hair loss. I'm happy as I'm helping other girls, I talk to them, I share my experience, I give them a hope.
I wish you all the best with the treatment. Take care, be strong and fight hard!!
Zaneta xx
Thank you fir your reply. Ive just visited your site,wonderful hats and turbans. And your story really touched me, what hell you went through, i am so glad you managed to keep going through such an incredibly painful and traumatic time. I hope you are keeping well both physically and emotionally. Your family is wonderful. Hugs to you
CIare
I meant on my LEFT ovary not my kept ovary!!
Hello Alnovca,
Welcome to the forum! As the others have said you will find lots of wisdom and advice here and during my treatment it was a life line and truly kept me sane!!!
I am just finished the Chemo you are about to start! You are in the stage now that is the most anxious time and it is difficult to see past the anxiety you are probably feeling. Chemo is difficult but it is doable and you will be at the end before you know it. The others have already given you the most important tips but I will reiterate a couple of them, drink loads of water it makes a big difference and helps with the digestive system which you prob will have noticed is something that I think we all struggle with. Let the nurses in the chemo ward know how you are feeling as they can after help. I had a change of antisicknesss Meds as the zofran I was on was playing havoc with my digestive system nurse suggested Emend and it really helped!!! Journaling is very helpful writing things down helps to rationalise what is happening to you and that can sometimes get overwhelming!!! Let yourself cry, don't hold it in let it flow!! Let your friends and family help its more for them to be honest as they can feel helpless!
I wish you the very best of luck with your treatment it seems daunting now and it is a difficult road but it's very doable and you have all of us here to help you along the way!!
Onwards and Upwards!!
Dx
Hi it's me again !! I forgot to say that the initial drugs for anti sickness may give you constipation, so drink lots if water/fluid, eat lots of good fibre beforehand and during treatment (change if you get diarrhoea ). I now drink a Nutribullet drink every morning, lots of greens and fruit blended, delicious and good for you.
If you do get constipation then raise your feet off the floor (couple of books) gently rock back and forth, throw a wrap around your shoulders to keep warm and take a book to read! I found that it took me a couple of visits for anything up to 40 minutes at a time before I could go. If nothing happened then I got off the pan and tried again later!
I couldn't believe I was giving bowel movement conversations with my family!!
Clare x
Wow! Clare, thank you for all your posts/replies . They are so helpful and I will definitely learn from your input! I did look up the Look Good Feel Better and I'm going to attend a session in May. I'm so excited about it. My hair is already short, but my biggest fear is chemo and losing my hair. I've been looking up pictures of how to tie scarves and wear them and that sort of thing. Thank you again for your help and encouragement!! This is so incredibly helpful!! Take care!
Hair - I can relate to that, you'll see I posted this week re my hair coming out, I had LOADS of great replies. My hair is coming off this evening when hubby comes home. I bought some clippers this morning and it's now time and I'm ok with that. I expect to be upset but I know it will be better.
You'll see if you look at my post that I Was quite upset this week when the first hair came out in the shower. I'm ok with it coming off now as its gone very lifeless and dull in the last 2 days and is falling more! If you're on Instagram you can find me under @clarehoski and see my photos; my short hair cut and my first attempt with a scarf today in practice for tomorrow !
I'm not on instagram, but I may join! Do you have pics posted on this site? Or am I going to have to join instagram? LOL Best to you!!
I only joined Instagram in Sept to post photos of my nephews wedding but ive been amazed at all the fantastic posts, pictures, organisations etc that you can view ir follow. Ive now connected with other Ovarian Cancer fighters and their photos are so inspiring.
Yiu can join and nake your account pruvate so you dont have to post photos or allow others to see them if you dont want to.
I also follow cancer survivors who post fantastic photos and recipes of healthy drinks and foods etc.
I love the site!!
The ladies here are tremendous there is in fact little to add except we are all here for you. Wishing you all the best with your treatment xxxx Trish
WOW! This site is amazing!! It is so comforting to hear from ladies going through the same or way worse than me and I know this will help me through this journey! Thank you all so much!! God bless you all!
Most of you have received the same chemo I'm about to go through. Did you lose your hair or did your love one lose their hair after the first treatment or after a subsequent treatment? How did you lose it? Did just big chunks of hair come out in the shower? Thanks in advance!! Blessings to you all!!
After the second treatment it began to fall out. I then shaved it off to avoid the dreaded clumps, I also think it is much better for regrowth. x Trish
My first strands of hair came out when I washed my hair in the shower this Tuesday, 2 weeks exactly since 1st chemo. It's now coming out when I brush my hair or run my fingers through it. Not clumps but strands and lots of single hairs, that's why it's coming off today. I don't want to see clumps dropping!, My second chemo (blood tests permitting) is next Wed.
That's what my doctor told me and another lady I've spoke with on the phone that took those meds is that it started coming out heavily around 2 weeks after the first treatment. But like Trish, I've read for some it happens after the 2nd treatment. Thank you!!
Andrea
Hi there
I am late replying and the other ladies have covered it all so I just want to add a few little bits. It is nearly always the same combination of chemo Carboplatin and taxol for first time with this disease. Some women do get nausea but thankfully I didn't so you might be lucky with that. I know the prospect of losing your hair is upsetting but for me I just didn't want to see clumps coming out so I got a spray tan and hair shaved on the same day that I was collecting my wig. I had it chosen just after my first chemo and also had a collection of scarves for the evening. As I said to someone else recently I am no Sinead Oconnor so the bald look was not for me. It can be for lots of women and you have such a pretty face from your photo you certainly could rock that look ! I just want to wish you all the best. A journal is a great idea. I have a room full and I faithfully write in it every night and it got any frustrations out of my system. I also studied mindfulness at a support centre which was invaluable.
In general the first 2 weeks can be difficult for some people but then week 3 you are back to yourself. Don't project too far into the future and remember the answer to the question " how do you eat an elephant ? " is " bit by bit "
I wish you all the best and so many women here will help you as they have helped me.
XXX
What an incredible reply!! I have chills!! YES, you are so right, bit by bit!! Thank you so much! Yes, I did start journaling so I can just remember what all happened when. I haven't really been "venting" yet, it's been more just facts and things I've learned from my appointments. Will definitely keep that up! Thank you so much for the kind words!! I'm going to start playing around with scarves and seeing how that goes. Thank you again!! The very best wishes to you as well!!
Hi again
Thanks for your kind words too. You will find me now and then putting up a hissy fit post about my own stuff but mostly I do try to help ! I just wanted to say on the journal I have a separate book for appointments , notes etc and my journal I just use for venting . After all you might want to publish it one day and your best seller with all your words of wisdom can't be cluttered with times of appointments etc. Good luck again and let us know how you are gettin on.
XXX
Hi alnovca, welcome to the site, all the ladies here have given you good advice. I would just add get to know if there isa gynae liason nurse in your hospital. Another useful support was a Cancer Support Centre with trained counsellors who you can speak to in confidence. We are lucky here to have Arc Cancer Support Houses in Ireland and they have given those with a cancer diagnosis great kindness and care for nearly twelve years or more now. I know the first treatment is daunting, bring a magazine or ipod, it will be all a bit strange at first. Make sure you get anti sickness drugs and if what you get is not enough, ask for something else. Remember feeling a little ill after treatment is not the Cancer rearing its head, its the Chemo working in your body.
Sorry to hear this news, alvonca. Do you really need chemo because the cancer was in the ovary which was removed and I dont know why they didnt do biopsy and lymph node removal at same time. I would wait till the staging and MRI results before doing anything. And maybe get a second opinion. I will say that taxol/carbo cocktail is a very aggressive chemo regimen, which is why you get it every 3 weeks. I have gone through that regimen myself. Symptoms such as fatigue, hair loss, weakness, bone pain, stomach pain, hearing, vision, teeth issues as well. Just listen to your body and rest often. But please wait for results of staging and lymph nodes labs.
Hugs,
Arlene