I'm halfway through 1st line treatment and really low. I know the weather isn't helping but the 2nd and 3rd treatments have hit my energy levels hard. I have pains in hands and feet, PN, but mainly soooooo tired I'm struggling to keep up with my walking regime.
Any tips? I cannot sleep even though I am exhausted.
I am struggling especially I think because Clear Cell is more likely NOT to respond to chemo than it is. HGSOC has I think an 80pc chance of responding. I know that RECURRENT CCOC is 1-8pc but what is initial CCOC? I read anywhere between 10 and 50pc but can't find the studies now.4
I think also making me feel low is that all anyone asks is how is the chemo? I want to say 'what the chemo that probably won't work?' (but don't). Chemo is hard, but for us Clear Cell ladies, it has the added sting of making your life hell with little chance of even working. Then there is the fear. Nobody asks about anything but the chemo, because most women's cancers that get press is breast cancer and that has a much much much lower chance of recurrence , if caught early, mainly.. I think my friends and family are just like well that's it she's having treatment now so that's it.
Sending love
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Emcee71
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Hi Emcee71I feel for you. It is sooo challenging having chemo. Exhausted, feeling unmotivated, insomnia and feeling low...
I am on 2nd cycle of chemo. With Gemcitabine single dose on weekly ( 3 weeks on, one week off). For me it's been working. My CA125 reduced from just over 1600 to now just under 400. I am very excited about it. With clear cell, never know what works .. I do get fatigue and my body don't seem to do what I ask to do... I just take it easy, I do sit down outside instead of walking... Need fresh air! I practice gentle yoga also, that helps a lot. Even using a chair... Not sleeping is also challenging. Exhausted... I do nap...
When people ask " how's chemo?" Tell them how you feel about it, that might stop them asking same question 😄 . You are doing well and going through a lot.
Thanks Norie, that's a really good tip about sitting outside when one feels unable to walk. If this bloody rain will just clear up I will go out into my garden (grateful to have a little one). It's East facing and I have a little chair and table which gets the morning sun. I will post a photo when I get out!
But most importantly I am really really pleased to read that your CA levels have come right down on the Gemcitabine. Sounds like a fantastic addition to the armoury as it were. Really happy for you!! Thank you for cheering me up XX
I totally get where you’re coming from. I don’t have cc but when I went through chemo I thought “imagine going through all this and it doesn’t work”. Regarding family, I had/have exactly the same reaction. My sister had just finished treatment for breast cancer whilst I was going through my treatment and when I spoke to her about the recurrence rates of OC she acted like it was no different to BC and all my family members, including my husband say “you’ll be fine you’ve had your chemo etc”. It is frustrating but I think it’s mainly because they can’t bear to think of the alternative. I do completely sympathise with you, it’s tough, we all get our low times but remember: “this too shall pass”. Xx
Oh Schnauzer that is really crap you have to deal with that comparison, I'm sorry to hear that. I have BC in the family too and get comparisons. Then a cousin messaged me to tell me all about her friend's OC and how she has recurred twice etc, detailing the whole journey in great detail. People are so challenging to deal with, even if they don't mean to be, aren't they? Sending love to you. I will remember the mantra, thank you so much XX
Sorry you are feeling so low and fed up although it’s all perfectly understandable.
As I’ve mentioned before I got PN from first. infusion (still have it) so know exactly how you feel, and it’s very strange not being in charge of your own extremities but you will get used to it. I’ve accepted I’ve probably got mine for good but still wake up hoping that it’s gone overnight.
As for the tiredness, try to nap when you can and maybe cut back on your walking regime just while you are in the eye of the storm. I was given a course of sleeping tablets at the start of my journey and I took one sparingly when I was absolutely desperate to reset and get some sleep but I promise you it does get better and go back to normal in the end.
I remember being REALLY irritated when I had my 3rd infusion of everyone telling me I’m halfway when I still had to go through exactly the same amount of infusions I’d already had but I honestly did find the last 3 much more bearable than the first 3, maybe because the damage had been done PN & hair loss but also I could see the finish line.
As a fellow CCOC I tried not to think of percentages of chemo not working but thought well chemo is expensive & they wouldn’t have given it to me if there was zero chance and perhaps I’ll be that low % of being successful.
Now I’m 14 months post chemo, have my hair back and fresh from a 4 month clear gynae check up I cannot tell you how pleased I still am that I had chemo because whatever happens I know (we) gave it our best shot at the time.
Sorry for the lengthy reply but I wanted you to know how you are feeling is perfectly normal and ok but there is light at the end of the tunnel.
Thank you Jen, as ever and here's to your good news! Bloody brilliant that is.
You're right, there IS a chance of success. Every little bit of hope and optimism helps with a lapse.. which I'm clearly having now. I feel better for your lovely words of encouragement.
It really is so crappy you still have the PN along with many others.
I'm currently debating whether to get the Taxol reduced a bit due it becoming worse each time as my Onco said she could do that without it affecting things. But as you say, we want to give it our best shot and to me, that includes the dosage! To be discussed at my review ....
I love your lengthy replies. You always have so many valuable words to say. Thank you XX
PS Hear you about the half way through. The thought of 7 hour sessions again fills me with dread BUT I realised is that after the half way through point, just one treatment later and it's two thirds in! That is somehow hard to compute but still, great!x
PS It should be five hours. I have good veins but always an hour wait then they leave me bloody beeping for hours in between stuff 🙄
Hi you are soo welcome and I’m glad if my words give you some encouragement. It really is soo different this side of treatment and things really do get back to some kind of normal bit by bit.
I would say January was a turning point for me where I thought it’s been 12 months since chemo finished the PN is probably here to stay so I need to push myself fitness wise and not stagnate and it’s worked. PN is still there but in the background more now it seems the more I do the less I notice it but if I do need to stop and rest then I do 🤷🏻♀️ I try to plan nice day trips out and think how far I’ve come in the past year.
I used to be in the chemo unit for about 7 hours too like you say the breaks and changeover plus the many visits to the loo add on to the times. I would definitely ask about dose being reduced as I’ve probably told you before the taxol was left out completely for my last infusion.
If you haven’t already done it mark in the calendar your last infusion, one minute it’s next month then all of a sudden it’s next week that you finish.
You are an individual, not a statistic, and worrying about statistics will not help you, or improve your response to chemo, or give you a single extra day of life. Put away the statistics, concentrate on what makes you feel good (don't pressurise yourself regarding the walking, do what you can and get back to it when you feel better). As one American lady put it on one of the old groups "if you have one foot in the past, worrying about what's already happened, and one in the future, worrying about what might happen, you pee all over today!" Sending hugs!
Hi, it's just horrible isn't it. I felt the same. I'm sending virtual hugs and reassurance that you're not alone. I've quoted Churchill before but it's still a good one:'If you're going through hell, keep going'
I agree with SuffolkJen about chemo that may or may not work: whatever happens, at least we know we gave it our best shot.
Hi, Emcee 71,so sorry your feeling so down. Not sleeping doesn't help. I take a small dose of oramorph at night which usually helps me get off to sleep.not to say I don't wake in the night but it helps a bit. The PN I have in my feet I found hot water bottles helped to ease it a bit I went to a foot specialist and had some electrical treatment which wasn't that pleasant but I think it helped to get the capillaries moving , she recommended massaging with petroleum jelly and camphor oil again to try and get the blood circulation flowing better.and exercises. I also used magnesium butter on my feet that can help sleep, it's not gone but it's less painful.
I agree your life seems to be taken over by the diagnosis and treatment and although I've always been grateful for friends and family concern, support yes it can seem like that's all they talk about. Be honest say how you feel. I then switch the chat back to them and hopefully they take the hint and talk about other things.
Try not to read the negative Google stuff it's so out of date.
Be kind to yourself, if you can't manage your walking regime that's OK your having treatment it will have an effect we have too accept that and just do what we can do. But maybe treat yourself to some nice things instead you deserve it
I've just started treatment again and was so angry as I was getting my life back but we decided this time even if I feel not so good some days we will not let it get in the way of trips we had already arranged. I've got more to talk about than the treatments then.
It's 4 years since my diagnosis and I've had many ups and downs but I am still here and I wouldn't be if I hadn't put myself through the treatments /ops etc.
Sorry for this long message hope the tips might be useful. Go to your doc for some sleeping aids maybe ?
I hope the rest of your treatment is kinder to you. Take care and sending hugs and positive vibes
Thank you Linda. I'm sorry you've had to start treatment again. And I guess acceptance is key about treatments. It's what we have to go through and we can choose how we do that. Thank you. Please don't apologise for a long reply, my own posts and replies are usually epic 😆
Your advice about treating myself is really good. I am utterly brassic / in bad debt but I do have a credit card, and I think I do need to use it just now for something small. A nice meal out or even just some cream for my bald itchy head! I'm glad you are honouring plans despite not always feeling great. Well done.
Hello EmceeTry not to get too disbondent with the 'what if's' as everyone reacts differently, no 2 people are the same.
It sounds like the harsh reality of chemo has hit you hard, just as it did with me, so try and let it happen, each moment at a time, and go with it..
Mine is likely clear cell stage 4 yet Ive just come out of surgery to be told mine has responded well! There is nothing left behind visible to the eye, and so the remaining chemo I am hoping with work similarly in areas like my lungs and neck lymph nodes.
You are feeling low,not surprising, and if you asked your family the above question they'd probably be shocked. It very hard for them I am sure.
I'm in intensive care atm as the pain from surgery needs to be controlled b4 I go anywhere.
Always here for a chat, I get plenty of low days too 😢😘
Kazzh I am so glad to hear from you, I have been thinking of you lots and wondering how the surgery went. Well done for getting this far. I can't believe you are messaging from ICU! I'm glad as it means you are connected to us all. We're with you my dear and of course you have down days, you're going through a massive ordeal. Rest up and do what they say, (not that I expect you have any choice at all right now ) you're in good hands xx
Are you feeling any better now? Hope you've had some sunshine 🌞 we have today & I managed a stroll & coffee in the garden. Meant to add in my previous reply that I have requested getting 2 large debts written off. Like you, I have little money so I just make the most of the small things I can enjoy in life, like sitting with the sun on my face in the garden, bliss! 😇
It takes effort so get support to do it if you decide its for you. Macmillan have been very helpful in that respect.
Tomorrow is another day, keep your chin up, big hugs 🤗 xx
Thank you. Good you got some debts written off. It's so hard isn't it.
I'm currently on the benefits merry-go-round and wondering what to do about the Tax Office who keep cutting me off mid conversation after hours of waiting for someone to answer. They really are not functional right now and that does not help people who are ill and get tired quickly. Let alone the neurodiverse amongst us!
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