Hi Ladies,
I've been reading the posts here for a couple of weeks now trying to build up the courage to post myself! I was recently diagnosed with Ovarian cancer and had a total hysterectomy on 2nd June. My consultant has advised me that I will start on a course of Taxol/Carbo in a week or so, I have read a few posts of the forum saying how aggressive this treatment is. Does anyone have any advice for me, I'm obviously a little scared about what's in store.
Helen
Hi Helen
I am having same treatment hopefully starting in 2 weeks. I had surgery on 17th May. Chemo delayed as my wound not healing. I have an app on Tuesday with the chemo nurses to go through what to expect. Like you I am very anxious.
The ladies here have been great and offered lots of tips and reassurance.
I wish you all the best with your sessions.
Sarah.
Hi Sarah,
Thanks for your reply. I'll let you know how it goes. Good luck with yours, keep me posted.
Best Wishes,
Helen
Hey Helen,
I am just over 3 months out from last treatment Carbo/Taxol for OC. It's not an easy road but it's very doable! Each person reacts differently but there are a few things that help everyone it would seem.
Listen to your body. Keep hydrated, drink loads of water it really does help a lot. Rest when you need too, cry/shout/scream when you need to, talk when you need too and remain quiet when you need to. On infusion day bring some distractions ipad, book, phone etc. Wear very comfy clothes!
Tell the nurses when you feel grotty they can often change Meds that can make a difference to how you feel.
Keep in touch with all the wise women that are on this forum they were a lifeline for me and still are.
The very very best of luck with your treatment I hope you sail through it won't be long until you are out the other side and take it from me it's great out here!!!!😊😊😊😊
Onwards and Upwards!!
Dx
Hi D,
Great to hear you are 'out the other side', I can't wait! Hope it won't take too long.
Thanks for all your advice and reassurance it really has given me a boost.
Helen x
Hi Helen, I just completed my 6th chemo of Taxol / Carbo and tomorrow I'm gonna do CT scan then later on appointment with surgeon. If I could add one more thing it would be a positive attitude and hang on to your faith. You have come this far, you can do it! I'll pray for you! 😊
Hi Helen. You will be fine. After my first session i thought i would instantly feel different as I got off the bed. Of course I didn't It isn't a bed of roses but we have all got on with it and surprised ourselves. We all seem to have different side affects. I haven't had the usual ones but suffered with chronic sore throat but that is no worse than other ladies' problems. People keep saying to me that I've been so brave and strong etc. I don't feel that I have been but just had to get on with it as there is no choice.
I quite like the chemo unit as I find bit quite upbeat and not doom and gloom. Each session that you can tick off is a step nearer.
You've had the op so now all systems go to final treatment.
I've just waffled really because other ladies have given good advice. Mine is more it is not as scary as you think.
The very best of luck. Tracey x
I've just had my 5th chemo, started of with carbo and Taxol and now on carbo only (5th and 6th'sessions). It's already been said but this IS do'able, the main thing is to recognise that you may or may not have side effects, not everyone does to the same extent BUT if you do find that you are being sick Or feeling nauseous even while taking your meds then CALL YOUR UNIT ! You will be given the standard meds to start with as not everyone needs anything different but if you don't feel well then you will be given advice and different meds.
Keep a journal with Day 1 as the day you get chemo and note all your symptoms, temperatures, pill taking, side effects etc in that,. This really helps you keep track of how you feel and you will use this to talk with your Oncologist...don't hide any side effects from him or her.
You will probably find that you are ok once you get past the first week of each session that sounds a long time but not every day of that week will be bad Or the same !
You need to rest, relax, have people do things for you or just take it easy. Plenty of ice as iced water can help, a good quality traditional lemonade, fruit (fresh apple and pineapple) to cut through any mouth tastes. Recognise that you can't and shouldn't, be trying to cook or look after others in the days after chemo! Recognise that you probably won't want to eat for a few days so if you have a family, partner etc they will have to look after themselves!
Flop around, post on here, try and sit outside (factor 50 in the sun!) a little walk, read a book or just lie in bed!
Suddenly you feel a little better, your mouth feels a little fresher, you feel a little stronger...
It's do'able, we are here for you
Clare x
My first chemo made me v sick & my oncologist changed the anti-sickness drug that goes through at same time. Then, he added steroids on day 1,2,3,4 & 5 weaning me off by that point. Cyclicine was also prescribed.
Hair went day 12. All my body fat was eaten & I weighed only 8 stone from around 9.75, but I never got any infections & still haven't a year later. Praise the powers that be.
I lived on organic chicken & veg soup, fresh squeezed orange & apple juice made into lollies, rye toast & peanut butter & scrambled eggs! Pretty much it.
My low point always hit 2 1/2 days after each chemo & lasted 3 days, but after the first one (miserable - like bad morning sickness,which I had all through pregnancies!) it was very bearable.
Good luck. Chemo ward is not the scary place u think it will be, everyone there had humour & we all shared such amazing camaraderie.
Don't panic, stay calm, believe in yr body's amazing ability to recover, & take someone u trust completely for the first chemo, or all of them if necessary.
Hi Helen 
I finished a 6 round course of Carbo/Taxol on March 4 this year.
It's not brilliantly fun, but I found the side effects were pretty manageable.
I didn't throw up once, which I was stoked with. The only thing I really struggled with was exhaustion on the third day after eh infusion, and pain in my pelvic bones.
Both were managed reasonably well once I complained to the doctor about them, I was given sleeping tablets to help me sleep while on the steroids, and then stronger pain killers to manage the pain. With those, I only really had the one day in the cycle where I felt utterly horrid.
I wish I had have asked for pain meds earlier, and something to help me sleep earlier. So don't be afraid to ask for them if you need them, and remember it's better to have them and not need them than need them and not have them.
Also, heating pads for the infusion that goes in cold! (I can't remember which one it is... but one of them goes in cold/fast, and the other is slow and not cold.) I found that I had a lot of achiness in my arm after the infusion, but heat on it REALLY helped and shortened then length of the achiness.
Ask your nurse if you can have one during the infusion to help minimize the cold, and then use one when you get home.
Honestly, for me the worst part is waiting for that first infusion. Loosing hair wasn't particularly fun, but I had some great scarves, a wig, and mastered the art of eyebrow drawing. (I got a suntan with penciled eyebrows... So I ended up with eyebrow tanlines. Thankfully they were straight, and just ended up being an awesome template, lol)
On the bright side, pubes falling out is HILARIOUS.
Oh Indego - this is a brilliant summary! I haven't had quite the same side effects as you, but you did make me laugh about the eyebrow tan lines, and the pubes...I was fascinated when my started to go! They went long before my head hair and I couldn't quite believe it 😄
Hi Helen
I had this combination when first diagnosed. The waiting and wondering is the worse. Everybody reacts differently and I was not too bad. As other ladies have advised, rest when you need to and try and keep positive. Yes you will lose your hair on this regime but that is such a small price to pay to getting well again and it does have it's advantages. Lovely smooth legs and underarms😄 I found that drinking ginger ale and ginger tea helped with any queasiness. Just make sure that you tell the nurse and oncologist of any issues , don't 'suffer in silence'. I used to get very shaky on day three, it was the steroids and I found out since that they could have been tweaked to make life a bit easier ! Sending good vibes and hope you sail through your treatment. Love and hugs Chris 😘😘🌻🌻
One other thing... Mark each session, it's an achievement! Hubby and I Wear little numbered badges (1 through 6) and change them each session. I wear my badge on my combat cap and he wears his on his t-shirt. Wear each badge for the 3 weeks then change to next, I also post my journey on Instagram (clarehoski) and have connected with some fabulous women around the world through there.,
Xx
Hello helen, I completed my chemo in Jan 2016. I was amazed that it wasn't too bad at all. Apart from losing all hair, I had minimum side effects. First treatment was the worst one & just felt yuk from day 2 for 3 days. I suffered from terrible pelvic cramps & pain but my tumour was still there ( had 3 rounds chemo, then hysterectomy & 3 more rounds & still on avastin). I also drank loads of sparking water & lime juice as I always felt that i wanted to flush my system as quick as possible. I also kept eating even if had no appetite, my family would cook for me & even when i thought I couldn't eat, I did!! Good luck & keep healthy xxxx
Hi Helen, like everyone says, the waiting is the worst! I am on carbo/taxol/avastin, and have had 1 session of all 3, and 1 of just taxol. I've been lucky so far, no sickness, a few niggly pelvic cramps, and overly sensitive teeth, but that's it! Well, apart from a couple of wobbly moments where I had to lie down for 20 mins, but so far so good. I had ascities before it started (fluid build up on the abdomen) had 5 drains made me feel totaly crap, but that completely disappeared during the first week, and I can honestly say I feel better that I did before. Long may it last!
Good luck with your treatment, I'm sure it won't be as bad as you think, let us know how you get on.
Take care, Penny xx
Hi Helen,
I would say prepare to surprise yourself. However you feel, you will get through it.
I have to say that I have honestly not found chemo as bad as I was expecting. For me, it's been nothing like in films or TV. I've had plenty of chemo related ups and downs. Constipation being by far my worse side effect, but I have also been neutropenic twice (out of 3 rounds so far) and have been kept in isolation in the hospital. The funny thing about that was that I felt absolutely 'fine' as I kept telling anyone who would listen (it was bloody boring on my own!). The constipation was far worse...!
On top of all the recommendations so far, I would also suggest travel sick bands. No idea if they actually work, or if it is a placebo effect, but I strap those bad boys on, leave them on for a week, and have little nausea from the chemo. It's either those, or the anti-sickness meds I'm given 🤔
xx
Hello Helen from another Helen!
I finished the same chemo as you on 17th May. Keep a diary as you may well find that if you have diarrhoea say on Day 5, you will always have it on Day 5. This helps with planning trips out, even to the shops, if you know which days to avoid. Also, it is a useful reminder what to tell the oncologist and/or nurses. The first few days after the chemo are usual fine as the steroids you are given make you hyper. You may find yourself hoovering the entire house during those days! My main problem was severe ankle pains for two days and eventual peripheral neuropathy in my feet and fingers and eventually had a 20% Taxol dose reduction but everyone reacts differently. For instance I didn't have nausea.
Take plenty of layers to wear in case your ward is either hot or cold. iPad, books, magazines, phone to occupy yourself. Headphones or noise-cancelling ear buds if you have them - the chemo ward can seem quite noisy after five hours or so of bleeping machines. Little snacks to eat.
Start investigating wigs now while you still feel well. Maybe your hospital have a service.
Try and get outside every day, even if it is only to the bottom of the garden, the end of the street.
Helen
The steroids did nothing for me at all! I was told I'd be full if energy and nothing! In fact once I forgot to take them at 3pm and took them at 8pm - I was asleep,with 15 mins!!!
Clare
Snap! I was told I'd be very chatty, but I'm very chatty anyway so no different to normal 😄
Oh gosh! Well I was away with the fairies. When no-one would listen to me anymore, I sent long emails.....
Helen,
Just adding my warmest wishes and full endorsement of all that has been shared with you. The senior partner GP summed it up for me when I started on this journey 5 years ago ... "Your focus is to build healthy Lesley Sage cells, nothing else and we will do all we can when you ask for help. Leave the killing up to us medics and you concentrate on the health." When I asked 'How?' he simply said "Healthy food, exercise and rest." It has taken me a long time to get the hang of the latter (first two a doddle in comparison for me) but 'resting well' is well worth practicing. After five years of experimenting, Mindfulness, writing a journal (even only once per month), writing poetry (no-one else reads it) storing up hobby things I can do sitting with my feet up, catching up on a skype with a friend, reading, developing my learning around this cancer stuff from all sorts of sources and making my own sense of it are all working for me to 'rest well'. I try to allocate two hours in the early/mid afternoon to this on as many days as I can....and it is three years since my last chemo now.
Take heart, nourish yourself (humour a great addition here...I even tried drawing cartoons of the hairless eyelash-less, eyebrow-less me) and keep asking questions. There is a whole new you out there who is loving the current you to bits and just wants to become part of the you who is living with cancer. Which reminds me, my daughter (a respiratory registrar in London) told me, clearly at the start, "Always remember you are living with cancer, Mum, and a long, long way from dying from it."
Hope your day is good everyone.
Lesley
Hi Helen
The ladies have given you fantastic advice on here - I've just got one to add. As a bit of background my last chemo was on 18 March this year. I'm mentioning end of chemo now as you sometimes need to plan in advance. I found end of chemo the most difficult and hear that this is very common. I'd already set up psychological support and found it invaluable post-chemo, along with going to support groups post-chemo. I mention this now because it took 2 months for my self-referral to psychological services to come through. I noticed my mood dropping after 4th and 5th chemos & was worried about spiralling down. Psychological support, & especially being given permission by my psychologist to continue to rest and recuperate fully post-chemo, and to nurture myself a lot, i.e. prioritise doing things that I enjoy and make me feel better was a godsend, as both I and others were expecting me to get on with things as before. I only needed 4 weekly sessions of therapy and then I was fine. I've recovered really really well. A month after last chemo I was feeling better than I had for years - & continue to do so. And I have made significant changes to my life, most importantly to not keep pushing myself to do loads and loads of things, which was my norm. I now have to forcibly tell myself not to take on loads of things but to really think about what's most useful for me and others. I'd say my experience of life is much richer now - I'm much more appreciative of everything I have & every day that I have - I'm actually happier than I was before! I feel much more alive and present in my life. Wishing you all the very very best in your journey xxxx Sundra
Just about to have chemo number 4 after a break for surgery. Concur with all the above, adding I found tonic water stopped leg/ cramps, and accupunture seemed to help constipation and nausea. Also I think Meds were tweaked after session feedback so do let clinic know if you feel bad. CNS said we are here to help not to inflict suffering which I thought was nice.
It isn't nice but so far not as bad as I had anticipated.
Good luck
T
There have been some good important studies showing that Carboplatin alone is just as effective. That's what I'm doing. I'm halfway through. Few side effects. Ask your oncologist. The original study was called Icon3 published in the 2002 Lancet. There have been several follow up studies that say the same. One from the UK in 2006 claims that here in the US taxol is given additionally just to make money. That's awful and probably not true at any rate it doesn't hurt to ask and research it all depends on your situation
That's interesting, I'll look into it, thanks for letting me know.
Helen
Best of luck. Please let me know. In my specific case I had a complete hysterectomy and removal of a huge ovarian cyst. When they biopsied they discovered that60% of that cyst contained grade 3 (aggressive) cancer cells but it was all encapsulated in the cyst. They did the debulking and the cancer had not spread. The chemo was to prevent any recurrence in case there might be any escapees.
Hi Jmackmom........That's very interesting about the studies showing that the carboplatin alone is just as effective! I had the 18 week regime of carbo/taxol. I've been in remission for 17 months. Diagnosed at Stage 4, so I'm very happy with my progress so far. I'm going to ask my doctor about the studies you mention. I'm in the US, too, and I had the best at Massachusetts General. The oncologist said that if/when the beast returns to pay me another visit they will use the carbo again since I did so well with it. He didn't say anything about the taxol. We'll see.
I hope you're doing well. Best wishes to you.......JudyV
Hi - I received the same frontline chemo, starting July 2013 to December 2013. I am sure you are going to receive a lot of responses with specific recommendations which will be on the mark. I thus decided to send you a copy of e-mail #2 (I was sending out blast e-mails to my circle of supporters throughout treatment) to give you another spin on treatment. It touches on a number of aspects of treatment and was written after 2 treatments. I will be honest - chemo is tough but YOU WILL GET THROUGH IT. No way did I think I was going to make it but I did. Many things, happy and painful, in the rest of my life went on during chemo and tough as it was, I got through it. I have to be one of the worst patients around. I'm anxious, question everything and seem to get every side effect in the book but I'm still here. Keep us posted and good luck! And allow yourself to grieve when needed! We're only human.
Subject: Hair today...
Gone tomorrow... Hi everyone - I have received a number of e-mails, calls and notes asking about how I was doing so thought I would send this, the latest sequel in the "Day in the Life of a Cancer Patient” series to update everyone (doubt this will ever have the following of those classics of days past, Marcus Welby, MD, Medical Center, or those of more recent vintage, ER and Grey's Anatomy. Sorry, the supporting cast, namely Sal and I on this end just can't compete). But, in my own personal drama, the major event between my first and second chemo, which did take place on August 13 as planned (the little bugger white and red blood cells and platelets held up thankfully, I don't know if my luck will hold in that department) was the losing of the locks. It started insidiously at first and then picked up in steam so that after 6 days I was definitely headed toward the Yul Brynner look. At that point the head was screaming out in pain and the oncology nurse advised a buzz cut since the follicles were irritated from the pull of the remaining hair. I had already picked out a small arsenal of head coverings, choosing the Eastern Babuska look and an Irish Tam O'Shantor piece over the Aunt Jemima, Little House on the Prairie and Pillsbury Doughboy numbers, with an exotic flowy sateen knotted scarf for big nights out on the town (!! I am still waiting to feel well enough to pull off a ride to the ocean, in this, the Ocean state). The hair loss was traumatic, but a small price to pay for my life, and while the weather is warm is actually somewhat liberating. A case of follulitis on the back of my scalp, however, due to the chemo is quite irritating and not responding to steroids and is driving me somewhat nutty with the itchiness. I also feel I have "phantom hair syndrome" as I am always reaching to adjust nonexistent strands. If this ever heals and once weather gets cooler I can also try wearing a wig.
The other side effects of chemo are more worrisome and potentially can be permanent so I am having to be very vigilant. With my particular chemo there is a real risk of naturopathy of the feet and hands (numbness, pain, tingling) which can become disabling. After the second infusion I started to get weird feelings in my toes so this will have to be taken into account when deciding on my next dose for chemo 3 (which is set for day after Labor Day again assuming the blood levels are OK). Also this week I was being a compliant patient and doing my lymphedema exercises and it seems to me I pulled something in a knee that had pre-existing issues. By Thursday I was hobbling with pain and I spent over 12 hours in not one but 2 emergency rooms as directed by my oncology team. After ruling out blood clots and broken bones, I was sent home with a painkiller and instructions to see an outpatient orthopedic surgeon as all the ones consulting that day in the ER were taken up with car crash victims!
Sal and I were quite done at that point and have no answers and my knee is still killing me. Many drug and of course surgical interventions are contraindicated while you are on chemo so hopefully the guy I am seeing this week will have a diagnosis and some easier solution.
>> The other big event following cycle 2 was that I officially turned another year older which is always a good thing because really, what is the alternative? I spent a quiet day at home resting off the effects of the chemo on the couch in my sunroom, with e-mails, cards, calls and visits from a few dear friends. Thank you all. Sal and I also celebrated our 19th Anniversary the end of July - I did not feel well enough to go out that night but we managed a low key dinner a few days later with a nice free concert of Broadway show tunes hosted by our local library. Talk about a "Staycation" this year!!! We also exchanged inexpensive token anniversary bands found on the internet engraved with the Serenity
Prayer – “God, grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference...". If that isn't a good way to approach the uncertainties of this time I don't know what is. The prayer is engraved on top and bottom of a spinner chain (for strength) in the middle (which you spin to defuse anxiety along with the popping of the Ativan) and we're wearing them to all appointments. The woman I ordered them from, a darling Southerner, had her own cancer saga with her son, 17 years old now but diagnosed with a brain tumor at age 5 and continuing to struggle. We both started crying on the phone and then she offered to engrave the inside of the rings free! It also turns out the author of the poem, a theologian named Reinhold Niebuhr hails from the Berkshires and you can visit his home, publicly available now as the "Serenity Cottage" and his church where the sermon using the prayer was first delivered. It's on our bucket list for one of these days. Also on my short-term wish list is to get to my 35th (!!!) HS reunion in NY so all of you TMLA graduates on this list, hold April 12 open. There are a million e-mails flying around on and off Facebook so it looks like it will be a big turnout.
Being a patient is many weeks turning into a full time job (I have 4 appointments this week alone) and as ridiculous as it may sound, I have precious little free time as between resting and recovery, the appointments and treatments, regular life and responsibilities still go on. Those of you I have not personally contacted yet, I promise I will!! Sal has been very overwhelmed with the care of his 2 parents, 92 and 94 and this weekend's chore is to move from their current apartment to a more affordable independent/assisted living facility. They have been very resistant to this change but we are having to enforce it as we are out of living options for them. The apartment is I think darling, on the 10th floor with a view of the city skyline (of course Mom hates heights and elevators but that's all that was available after having them on a list for 6 years!! Maybe I will get my application in for assisted living soon!).
I appreciate all those positive thoughts drifting over this way - especially for infusion number 3 on September 3 (maybe that symmetry bodes well?). I have a new chemo nurse as Ratched was not working out in my personal drama and she is much more empathetic although she did not look too pleased when I told her I was going to be wrapping my hands and feet in ice packs for the next infusion (some anecdotal evidence that it may help with the neuropathy). Hey, we all need to be our own best medical advocates despite minor inconveniences to those allegedly trying to help us). How I will pull this off and keep these strapped to the extremities I'm not sure and I will need to pack some warm blankets as well. Another project to figure out this week. Hey, at least I'm not yet succumbing to "chemo brain” although am starting to use that as an excuse to any minor lapse in memory or concentration.
On that note, I will sign off and thank you all again for your support.
As always, M
Hi Helen,
I would endorse what the others have said already and just emphasise again that chemo is tough but doable. Waiting to have the first cycle is probably hardest but after that you soon get into the routine. We are all on slightly different regimes due to differences in doses so our responses will be individual.
I found the 2 days of steroids great then would suddenly collapse with fatigue on day 4 or 5. I had no problems with nausea but did take meds for them which worked. However, constipation was a trickier issue eventually resolved by my oncologist giving me Docusayte Sodium 100 mg. The golden rule is to report any side effects to your team and trust them to sort things out, which is what they are there for and mostly very good at!!
Most importantly try to take one day at a time as it is impossible to predict how you will feel on any given day and go with what your own body says. It is the true expert!
Do hope you will find chemo less of an ordeal than expected and look forward to hearing how your journey continues.
Best wishes especially for the chemo,
Barbara
I don't feel I can add much more, but after an allergic reaction which was quickly sorted out, I sailed through.
I got tired and when I did I gave in to it,never feel guilty if you do, I still have a nap now if I need it.
I am 16 months after finishing treatment and I can honestly say I am just stronger and feeling back to normal the last 2 to 3 months.
The thing I have most struggled with is the aftermath, the shock and the did that really happen to me?, I have coped with this by attending some support groups and I think I can cope now,but never suffer alone and ask for help if you need it,
I am in remission and living life to the full, you will come through this, we are all here to help you, just look to the future and stay strong
Carole xxx
Hi Helen......I don't have much to add to all the wonderful notes you've received from all these lovely ladies. I was diagnosed with Stage 4 OC....had the surgery, then started the 18 week regime of carbo/taxol. I've been in remission for 17 months now, and I'm doing very well.
You've joined a club none of us wanted to join, but here we are. It's a journey, and you'll find your way, and I'm sure you'll do very well.....just like all the rest of us.
You have many sisters on this site, so keep us posted.
Prayers out to you and your family.........JudyV
Hi Judy,
Just looking through my replies again, so pleased to read your story, just found out that my OC is Stage 4 too. I asked my consultant point blank what stage my cancer was at but he just said moderate, found out last week when I received a copy of the letter he sent to my clinical oncologist!! I start the carbo/taxol on Thursday, just hope my outcome is as good as yours.
Helen x
Helen, the neuropathy can get quite painful. it builds up after each dose of chemo. My nutritionist told me to take 3 teaspoons in a cold beverage twice a day. I've been doing that for months and it's reduced the pain by 90%
Hi Helena, I too was diagnosed with oc in February this year. Had full hysterectomy and major debulking and was then told I would have 6 cycles of Taxol/carbo. I have just had chemo number 5 and have had a pretty awful week so far but there is no point in me describing what the treatment does to you because we are all different and can be affected in different ways. Suffice to say I found this forum invaluable because whatever question you seem to ask, someone will have experienced what you are going through and will post helpful advice. Stay strong and all the best with your treatment when it starts. Keep us posted on how you are getting on. Hugs and kisses to all. June x
Gem/carbo worse than carbo/taxol???
Avastin + Taxol + Carbo & eye problems
Nausea 1 week after carbo taxol
