Feeling low today ,not sure if I've made the right decision , so far I've had three cycles of carbo and taxol ,taxol killed my legs ,couldn't walk around the house without sticks for over a week each time, so painful I had oramorph to get by ,I then had three cycles of carbo ,easier to tolerate ,then surgery seven weeks ago ,good result all cancer removed that they could see ,so picking up now .Saw oncologist Monday I'm starting chemo again tomorrow,three cycles, my dilemma is in the heat of the moment I plumped for carbo and taxol ,must have been mad ,now I'm scared to death of the pain to come ,but wanted the best option , my hair has grown and I'm in tears at the thought of losing it again ,which is silly because it didn't bother me before ,also my oncologist said the cancer will come back ,I knew this but hearing him say it hit home ,spent days thinking is all this worth it for it to come back and have to go through it all again ,sorry to he such a wimp when a lot of you ladies have suffered so much more than me ,but I've found in the past a bit of a rant makes me feel better ,and saves my long suffering husband from a day of hell ,he'll have plenty of those in the coming weeks. Xx
Chemo again.: Feeling low today ,not sure if I've... - My Ovacome
Chemo again.
Oh I know exactly how you are feeling and I am sure most of the ladies here do too. It so annoys me when they say it will come back. I was told mine would and ok so it did but still here 12 years later and looking back having chemo was far from pleasant but I am still here. I can recall needing the loo and having to tackle the stairs on my hands and knees and then having to sit on the loo for 10 mins because I simply didn't have the strength to move. Lying in bed on the phone to the Samaritans just for someone to talk to about whether this fight for life was worth it. Having said that you have done this once, you can do it again. You rant away, we are here for you good days and bad. Sending you a big hug. Kathy xx
Kathy thank you so much ,I can't tell you how much its helped me ,so reassuring , OK bring it on ,in twelve years time I will be on here helping someone like you've helped me ,sending hugs back . ,❤
Hi
Decisions like are are always difficult. You do the best you can. Pain ( I still have some) can be managed and you will get through it. Nobody can see the future. Many ladies on here have had recurrences and then had remissions. One lady on the American forum Inspire had OC 30 years ago had a recurrence 28 years ago and has been ok since.
It may come back but you can deal with that if/when it happens.
This forum can give you great support from people who really understand. Rant away.
Best wishes
Fay
Thank you Fay ,what you've said makes perfect sense , this forum is amazing ,no matter how caring family and friends are its only people like yourself who have gone through it that really understand .❤
Hi,
You say you plumped for Carbo & Taxol but I’m sure it was on the advice of your Oncologist. They wouldn’t advise something that wasn’t considered good, if not excellent, first line treatment. I asked about the choice of these drugs and my Oncologist & Nurse Specialist both said they were the gold standard choice. They are both powerful drugs... Sounds like you may have had a bit (or a lot?) of neuropathy following your initial chemo? Tell your team. They may reduce the Taxol dosage but if not, have you heard that keeping your hands & feet cool helps to lessen the effects? The Oncology Nurses may be able to help you with advice/info.
I had standard Carbo & Taxol in the summer of 2017 and am on ‘watch & wait’, feeling generally well, with some ‘nodules’ that, at present, don’t seem to be growing. It’s a strange journey isn’t it?!
You’ll do it & you are having gold standard treatment!! 💛
Linda xx
Thank you Linda ,oncologist said both is usual treatment but as I had such a bad reaction to taxol I could just have carbo,I said I'd give it a try again ,just want the most effective treatment , I will take your advice and tell the team if it becomes unbearable again . xx
Well Done for trying both again xx
Also, does your unit have the cold cap to prevent hair loss?
Keeping feet cool is the same principle.
(Take a warm cardi or a light blanket)
Was thinking about a cold cap ,thanks .xx
Ice your hands and feet as well. It's a bit of work, but worth it. I've had front line and two recurrences and no neuropathy in hands and a tiny bit in my feet.
Just to add I am now having chemo for first recurrence and completed first round a week ago. Yes I feel nauseaus and tired but we can do this! When I’m feeling rubbish I drag myself down the beach with our dog and then come home and just sit on the sofa taking it easy. I’ve also been looking at lovely holiday destinations for next year to see me through the tough days. I’ve stocked up on ice lollies and very bland food as that’s all I fancy and I just think that in a few days I’ll be feeling brighter. It’s actually great to be relaxing, eating lollies and digestive biscuits making my husband and daughters wait on me! Take it easy and pamper yourself as much as you can. Good luck xx
Hi
I haven’t had experience of Chemo yet.
I Have just been diagnosed today with Stage 2a High grade Fallopian Cancer. They tell me the treatment is exactly the same has Ovarian Cancer.
I will be having 6 cycles of Carboplatin and Paclitexel in 3 weeks time.
Just wanted to give you a hug 🤗 and say keep going you are so worth the fight. 💗
Thank you so much ,sorry to hear of your diagnosis ,this is a tough journey , but us girls will fight ,good luck with your treatment ,keep us posted ,sending you hugs back .xx
I had a feeling it was cancer all along,....
with the right treatment it will become a chronic disease and we adapt our lives to the ups and downs a chronic disease presents.
The very good news.....we learn how to hold on to the good days and fill them with LIVING our best lives.
It’s not an easy journey but all the incredible ladies on this forum have helped me so much and given me the strength to carry on.
I hope you have been lifted too Fendweller 💗
You have come so far , hopefully when your chemo has finished you will enjoy many years NED. 😊🤗
I've been lifted many times by you lovely ladies ,so grateful to you all .xx
Hi Fendweller
I also had chemo op chemo and I can remember having some hair and then it all went again. It is really hard and demoralising! But you must remember that for a small percentage of OC patients they will have first line and that will be it.... no recurrence. The decision I made and that you have made too is that we want to give ourselves that chance. Go for it! ( I was stage 4, my treatment was four years ago with no recurrence) xx
You have given me hope and strength to go on , so pleased to hear you are doing so well ,long may it continue ,sending hugs .xx
I too get annoyed when we are told 'It will come back' in such certain terms. I was told this by my surgeon during his post-op ward round, just after he'd told me with a beaming smile that he'd removed everything and it had been a total success - 'Let's hope we have slowed things down a little, maybe given you a few more months'. At my out-patients follow up oncology appointment a registrar replied 'It will come back' to most things I said, including how well I was feeling. It just leaves one feeling despondent and hopeless.
Three years on and yes, I have had one recurrence. This time it felt more like a blip and I feel very healthy again and enjoying life hugely.
I would suggest you do whatever it takes to feel in control here. If the treatment you've agreed to causes you more pain, then go back to having carbo only. It worked well for you before. I wouldn't suggest that anyone turns their back on treatment but the oncologist can only speak as an advocate of the studies that have been done, not as someone who knows best how your body will respond. Chemo saves us and wrecks us at the same time and I am all for minimising the bad bits! Best wishes for your chemo x
I know what that pain is like-I had it too. They dropped the dose of taxol for the last infusion and it made a big difference. The neuropathy was better too. Might be worth considering.
Good luck!
Lou xxx
I'll bear that in mind ,thank you ,having chemo as we speak , so its wait and see .xx
All the best xxx
Thank you xx
Oh poor you. You know sometimes it’s good to have a wallow and really say how you feel. Sometimes I get exhausted being bloody positive and just want
to scream the reality at people but then I get back on track. One day at a time and try to see something good in each day.
I’m only a week post op(first recurrence) with more chemo to look forward to. Oh yippee I can’t wait - see that positive me. However I feel like you often and no matter how many people are looking out for you, loving you and supporting you the truth is that cancer is a road you walk alone. Don’t apologise have a wallow and a weep now and again but then for your own sake try to do something indulgent and remind yourself that the battle is worth it. Now I’m going back to worrying about my lump. X
I've had a good wallow now I'm getting on with it ,having chemo ad we speak . thank you for answer and advice .xx
I’m not at your stage of decisions but I know how low I was after surgery. So your not thinking in the right frame of mind. I’ve had painful legs for a year now and as someone said to me - it’s the price to live. Obviously I don’t know you but that’s the thing we all want to live so we do these dreadful things to do that. Try and think of the in between treatments - was it good to be alive? There will be your answer. Lots of love and a big hug xx
You're so right , I'm going for it and looking forward to the one week I'll feel reasonably well enough to do something nice. Xx
That’s right do something lovely for you even a small thing. Think well done me. Count them down. I’ve know you have done it before but it has to be done x
Just finished the first ,I know it won't kick in till Sunday / Monday but I'm counting down .x
I am in the US and they told me if and when I do taxol again, they now put hands and feet on or in ice packs--supposed to make a big difference with neuropathy. Don't know if they tried that with you already since you had this pain before but you may want to ask about it if not. I think you made the right decision. Can you ask to go to palliative care so they can help manage your symptoms? oxox Judy
Ice packs have never been mentioned ,I will ask them about it , thank you .xx
I was in chemo today and asked about the ice packs. It’s not being used here. Like Maxjor said it’s in the US. Maybe see if the Oncologist has heard of it? X
I am going to ask the oncologist ,I was in chemo today but didn't read the post till after I'd left ,my legs are aching already but not painful yet .x
You can also bring your own (if they have a refill for ice where you go). I saw pictures of some ladies putting the ice in a large baggie and resting their hands and feet on those. At my hospital, they have an ice machine-I used to chew the ice during chemo which was supposed to help with the mouth sores too. And it did help me--but my son was with me and he had to keep going to get more ice in as it did keep melting. Good luck! oxox
i would try it . The ladies have given you wonderful tips and I do believe this is the combo most used after surgery.
I'm having it now going to give it a good go .thank you .xx
I feel for you so much. Having to make the decision to also have Taxol must have been hard. I hated it when I had to lose my hair again. I did have the Taxol reduced a bit because my blood tests showed the full dose was too much for me but it made no difference to hair loss. Just tell yourself you can stop the Taxol and just have Carbo if necessary. I've had four courses of Chemo over the years and two lots of Radiotherapy. I'm about to have more Radiotherapy to try and help the Lymphedema. Then I may be having Chemo again. I dread the thought of losing my hair again but if I can take it I will. I'm not ready to give up yet. It will be 13 YEARS NEXT MONTH since my debulking op. Wow, I've been so lucky and I hope you will be, too.
Keep smiling but have rants too if it helps. Love and a hug, Solange 😊
Thirteen Years is amazing , makes me feel a lot more positive , like I've got got a reason to fight ,and I will , thank you .xx
How we all love to hear stories like this Solange. Please keep posting, every day if possible. It’s better than any pill or pain killer.
My love to you
Angela xx
I am on my first recurrence treatment of Carbo/Caelyx, I have had 4 cycles and only slight tingling in feet, the neuropathy was much worse on Taxol. I lost all my hair on taxol but it has only thinned slightly on top on carbo/caelyx. I think if I were you as you suffered so badly the first time, if you have any alternative treatment available to you. You could also opt for a 2nd opinion. I personally think quality of life is just as important as quantity. Good Luck Lyn x
Thank you Lyn ,I had my first of three yesterday ,so far OK but in the past the pain kicked in on day three ,if its as bad this time I'm going to stop it ,as you rightly said quality of life is important , hope your treatment goes well .xx
Sorry to hear you struggled with your chemo. Side effects are so random - you may not get the same this time.
I was also told, before I had my initial surgery in 2016 that it would come back, though it could be years before it did. I had surgery first, then 6 carbo/taxol chemo, but had the dose of taxol reduced for the last two as I was having issues with neuropathy. My cancer came back much sooner than I had hoped, in 2017, and at the time I was devastated, frightened I'd reached the end of the road. However, I took heart from the ladies on here who've had OC for many years and are just getting on with life even after several recurrences. I had further chemo - this time carbo/caelyx, which I was told is common for recurrence. It seemed much easier on the body, quicker to administer and you don't lose your hair. That brought my CA125 levels back down to what they'd been after the first lots of chemo and qualified me to go on to Niraparib. 2 years on and I'm doing well and really enjoying life. As we all do - I have my dark times, but I know I'm not alone and someone on here will be in the same situation and give their support.
Wishing you all the best with your further treatment. x
Thank you , had my first if three yesterday ,do far so good , you lovely ladies that take time to help others despite your own trouble fill my heart with joy and gives me courage and hope ,long may you continue to stay well .xx
I used a TENS machine after my first couple of taxol sessions - it helped with the leg and back pain. I'd forgotten about that until just now. It might be worth your trying that.
I hadn't thought of that ,I'll look into it thank you .xx
Dear Fendweller, You can do this! I also had difficulty and had chemo reduced. The tumours still shrunk. I opted not to have the terrible operation they described and am on watch and see or whatever it is called! Get a scan in November and results 5th Dec. Very scared but given strength by all the people on this forum, most people seem to have survived much longer than they were told and no-one can predict what is round the corner. I agree with everything that has been said so far. Sorry you are feeling low, it is perfectly natural to think the worse but all our hopes and good wishes are with you. With love and hugs.
Pat xx
No chemo today due to low platelets......feeling worried for next week
Facing chemo for the 2nd time and frightened
What's your secret 
2nd recurrence. 4 chemo combos all failed. Any suggestions? 
No surgery for me
