I have received my final biopsy results. I am stage 3b as they found oc in omentum and small bowel mesentery. Quite shocking since they had staged me 1c based on CT and MRI. So now they propose 2 treatment approaches - 1 longer infusion of carbo/taxol every 21 days for 6 cycles or weekly 2-3 h infusions at 1/3 dose for 18 weeks. They offer the cold cap only for the second treatment as apparently it’s difficult to keep it longer than 3 hours. So here are my questions please:
What is your experience with weekly vs once every 21 days? Is one more effective or easier to tolerate than other? (I have a medical history of autoimmune disease - MS and Behcet’s).
What is your experience with the cold cap? They warned me it can give headaches and also that my curly hair makes it less effective. Should I cut my hair short just in case?
Do you have any advice on how to prevent neuropathy in limbs? I’m very prone to it due to my preexisting neuro issues.
Many thanks for reading and for any advice you may have for me.
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Lara1
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I had carbo/taxol every 3 weeks. I wasn't offered the option for weekly at a lower dose. It is a long day when you do it every 3 weeks, but it was nice to only be stuck once every three weeks (I didn't have a port) rather than weekly.
I asked about the cold cap, but it was not offered (I could bring all the stuff myself). Rather than go through the hassle and discomfort of the cold, I elected to just deal with losing my hair. It started falling out after the first treatment and I had it all buzzed off. I found cute hats and a couple of wigs that got me through until my hair grew back.
I'm not sure if there is a way to prevent neuropathy, but be sure to tell your medical staff if you notice any. My side effects were pretty manageable from the treatment. I was prepared to have really bad nausea, but I didn't have any. Losing my hair was the biggest (and most noticeable side effect).
As I have posted before, wigs, glorious wigs. I have red, grey, blonde and brown. Simply Wigs and Valentines are best sites. Make sure you can return them if not right. Love, Emma xx
Firstly I want to acknowledge the shock you must’ve felt with the change of staging. It just shows how they really cannot be sure of anything until after surgery. They were sure mine was a fibroid until pathology when it showed as CCOC.
I was only offered infusion carbo/taxol every 21 days and like you was told that due to the length of treatment I wasn’t eligible for cold cap. I lost all my hair before 2nd infusion.
I did get neuropathy from day 6 after first infusion so they lowered taxol a couple of times and left it out completely for 6th infusion. I still have bad neuropathy 2 years on but I think I was just unlucky.
I would go with whatever your team advises is best for you.
I wish you all the best, you can do it and it will end, just hang on in there xx Jen
Thanks for answering. I already have numbness and tingling in my hands and feet due to the MS. What’s more, I lost control of my legs for a couple of days post op due to the epidural they were pumping in my back for pain relief. so I’m pretty positive I’ll get neuropathy and it will last like in your case. Weren’t you offered anything to treat it once it started?
Hi, no I wasn’t offered anything, just the reduction in dose and removal for final infusion. I wasn’t even aware anything could be done 🤷🏻♀️ but either way too late for me now. Remember not everyone gets neuropathy and I went into it thinking it won’t happen to me but I totally understand your concerns regarding your other conditions. xx Jen
Hi, sorry to hear about your diagnosis, I too was upstaged after surgery and it’s quite a blow so I know how you feel. I had carbo/taxol every 3 weeks, and wore a cold cap for the whole day, I was there for 7 hours so I don’t understand why you’ve been told this. Are you in the UK? Personally I think it’s well worth the extra time it takes as my hair was saved so I’m so glad I persevered with it. It did thin but nothing anyone else would notice. The discomfort is only for the first 10/15 minutes until the scalp goes numb. Obviously it’s personal choice, but it was very important to me to try and keep my hair. I didn’t really experience neuropathy, only very mild in my little fingers but it only lasted a few days. I think in the US they put ice packs on hands and feet to try and stop it, not sure if that’s done here in UK. Wishing you all the best and if I can be of further help regarding the cold cap please ask x
Hi Schnauzer, thanks for replying. Did you have any headaches or any trouble with the cap? What kind of hair do you have and did you cut it at all or did anything to it before using the cap?
No trouble with it, obviously it’s a pain being hooked up to it but if you want to try and keep your hair that’s what you have to do. I didn’t cut my hair, I have straight shoulder length hair, I just made sure that it was really soaked before cap put on and it’s essential that it fits fairly tightly. I think I had a size small inner cap and a medium outer cap. I met another lady who persevered with it and she kept her hair also. It really boils down to how important it is to you. It adds a couple of hours to the day but to keep my hair that was well worth it as it’s only once every 3 weeks.
Hi, yes, my chemo center (north of Seattle, WA) wrapped my hands and feet in plastic bags of ice that were kept in place with heavy tape (like duct tape). It was a very cheap, basic set-up! I had the carbo/taxol weekly for 6 cycles (18 visits). I shivered, even wearing layers and covered in blankets. I had neoropathy on the tips of three fingers that took six months to resolve. So I'm glad that I decided to ice.
Sorry to hear about the restaging. Must have been a dreadful shock.
Just a quick three words on the cold cap. Do not bother. I used it for three 7-hour treatments and hair still came out after third. And what's worse, the stuff that was left became twisted and entangled like a Tarzan rope-swing, stuck out from the side of my head. The people in the wig shop thought it was a tumour, kindly spent ages detangling it so they could cut it off.
On your treatment options, I had a PICC line and now wish I had option of shorter treatment time as I had this for months and it was a real pain.
Thanks for replying Candleapplegrey. That’s a crazy story.. I have quite thick and wavy hair and I have misgivings about the cap, but I’m inclined to give it a try. Do you think I could avoid the issue you had if I cut my hair short(er) just in case?
Hi Lara, I had carbo/taxol every week as part of the ICON8 trial and it was really OK, although in my experience it can take longer than 2-3 hours if the pharmacy hasn’t got the infusion ready. Before that I had all the preparatory drugs (sorry for the vagueness, but it was 10 years ago!). I didn’t have the last five infusions as my bloods weren’t great and I had to have a couple of blood infusions.
The cold cap seemed like too much extra hassle, so I just had my hair cut very short before most of it fell out. I just used nice scarves and stuff.
I do have some neuropathy in my feet and hands.
Hope all goes well for you - I was 3a and am still here!
Lots of lovely ladies have already replied to you with lots of information.
I just tell you from my experience. I would cut hair short and use the cool cap. I joined a chairty webinar after my hair even had grown back just for knowledge and they said if you use cool cab it will help your hair to grow back quicker. As like others I lost my hair after the 1st chemo and I didnt bother with it. About the cool cap and headache. It was only 1st 10 mins very cold but then I used to it. No headache.
I had 6 chemo and then surgery follow with two more chemo. Everyone told me I will lose my hair again but I lost very little this time. My hair was short and I used the cool cab both times.
So sorry to hear about your staging it must have been a shock. I was diagnosed with 1c after scan which went to 3c after surgery and they couldn’t remove all the cancer!
I had 3 weekly carbo/taxol to start with and had some neuropathy and lost all my hair I didn’t think I’d be able tolerate the cold cap.
I had the weekly combination 3rd line and used cold gloves and socks which you can get from Amazon and had no neuropathy. I also took a combination of medicinal mushrooms which helped with all side effects.
I had a port fitted for easy access and that was the best thing I’ve done.
Hi LaraI started on a 3 week regime but after the first session they switched me to weekly. I must say that I found the weekly sessions much better, with few side effects and a shorter time in the hospital. I do live very close, though, so going in weekly wasn't a problem. (I was stage 3c). I didn't have a port, but weekly cannulas worked well for me.
As for the cold cap, I had very thick, slightly wavy hair in a long bob. I read up about the cold cap and decided to give it a go. My first session was 9 hours altogether (my meds hasn't been sent from pharmacy). I don't think the lady volunteer wet my hair enough, I think because it wasn't a mass of curls she didn't realise how much there was. She got very cross when I queried it and when I said I'd read all the instructions on the Pacman website she got even crosser "don't go looking at websites, I've been doing this for years, I know what I'm doing". She said that the back didn't need to be wet, but the website says that everything that is under the cap should be wet. They left the cap on during the 1&1/2 hour wait for the meds to come, but not switched on, so I think it dried even more and if I had known that it's actually quite easy to get it on and off I would have asked them to remove it and start again.
My hair started coming out after 14 days, but they persuaded me to use it again on the next visit but by the 3rd visit it was virtually all gone so I didn't bother.
I still get cross when I think about it!
However, I did see people for whom it worked well, so if it is important to you then give it a go, just make sure it all gets wet! If they won't let you use it on the first long session then I would say that you will lose your hair anyway. Maybe another reason to go for weekly sessions? I had my debulking op half way through and I didn't lose the fluffy hair that had started to grow during the weeks that I was off-chemo, so maybe the weekly regime is better in general for hair loss?
The cold cap is uncomfortable and horribly icy too begin with, but it does get less uncomfortable after the first 10 minutes and they give you a heat pad to keep you warm, and blankets if needed. All the same I was much happier once I'd given it up.
I have got some neuropathy, just in my feet, which hasn't improved in the 4 months since chemo ended, but I live in hope! I don't think there is anything that can be done about it, other than reduce the dose, but I wasn't keen on that idea.
Hope this hasn't been too long winded, and hope it helps you to make up your mind.
Hi, sorry to read about yr diagnosis. I had chemo every 3 weeks, weekly was never mentioned, nor was the cold cap. I did get and still have neuropathy in my feet. I was diagnosed 3b HGS BRAC2 in Oct 2007, still here despite 2 recurrences and 3 trial drugs. Currently still on 3rd trial drugs and currently 11 years NED and my onc believes I’m cured. For my second recurrence I had a PICC line fitted which was a godsend, I’d been offered prev but put off having it fitted, I wish I’d had it earlier. Good luck x
Hi Katmal so glad to hear you're still in remission after all these years, amazing!!!Can I ask did you or do you take any supplements or follow any special diet?
Thank you. To be honest I changed nothing. I was told I had 2 years to live so live I did, went back to work full time ASAP, went on as many hols as I could, bought a puppy and new house. Took every drug they’d give me.
Sorry to hear about your diagnosis, that must be rough. I was diagnosed with 3b in November - wasn't offered the weekly option for carbo/taxol. Once in three weeks was actually pretty ok - the first 4-5 days felt like a bad flu but then I had two good weeks before I had to go back in.
We don't get offered cold caps in India - my gynac told me it would be better to cut my hair short and invest in a wig instead of dealing with the pain of watching it fall out everyday. I had fun shopping with caps and wigs from my hospital bed :).
I also developed a bad neck pain in the second month and a pain specialist put me on Pregabalin for that and for any neuropathic pain. It's really helped.
I don't have experience with weekly carbo/Taxol but I know someone who did they didn't lose their hair. I do have experience with cold capping I'm in the states I believe you use Paxman I used it twice at frontline and recurrence both with carbo/Taxol I lost about 20% of my hair everyone is different as to how much they lose it is a big commitment I won't lie but keeping my hair was important to me my tips would be cut it very short prior to first capping, I bought slip on ear muffs from amazon, took 2 Tylenol & 1/2 a Xanax as capping makes for a long day with the Benadryl along with the Xanax it would knock me out the freezing sensation is about 15 minutes my first infusion with the cap was 10 hours due to a slow drip for side effects, 8 hours after that have to follow a strict at home protocol cant wash more than 2 times a week, no irons I did use a blow dryer on cool. For the neuropathy as I was already on Gabapentin for a different issue, I took 300-600 mgs at night and never got neuropathy I had 12 Carbo/Taxol hope this helps.
Hi Saintgermain, what were the ear muffs for? The cap does feel like extra hassle but I feel it is worth a try and not only for hair in my case. I have nerve inflammation due to MS and cooling my head might actually prevent the chemo from making it worse. At least in theory. I’ll see what actually happens in practice. For my hands, feet, shins and lower back where I already have numbness and tingling I bought several icing socks, pads, gloves from amazon. I’ll try to ice as much as I can, hopefully it’ll work.
Your ears start getting very cold and uncomfortable I bought the ones you slip over each ear helped a lot. Sorry your having to go thru this journey along with MS I would give it a try I didn’t use the icing booties or mitts but I bought them from Amazon am currently on a different chemo for recurrence than can also cause neuropathy so far so good I don’t know with MS if Gabapentin is an option I feel it’s worked for me.
Hi Lara. I too am sorry you’ve been staged higher. I can’t speak to the cold cap. I did ice my hands and feet when I had carbo and doxil for recurrence. I think acupuncture and vitamins B6 and B12 can help with neuropathy (but ask your team). I didn’t want weekly chemo because I valued the recovery time with the three weekly cycles but I have heard the side effects might not be so bad with weekly treatment because of the lower doses. Maybe that’s why they’re offering it. I strongly recommend getting a port. It doesn’t seem to be the norm in the UK but it makes everything so easy and you do need to do anything special like you do with a PICC line.
I can’t bring myself to get the port. My surgeon offered to put it in during my debulking op a month ago but I declined. With all the post op issues I had, including a nosocomial infection, I feel the port would have added extra stress and possibly problems. My onc said I can start without it and see how it goes. Where is yours? Were you put to sleep when you got it?
Hi. I get how you felt. I wasn’t given a choice! My daughter is a doctor and she was helping arrange things in the early days of my testing, surgery, etc. She would just tell me the schedule for everything. Mine is on the right side of my chest. Yes I was put to sleep, “conscious sedation.” It was sore for a couple of weeks but soon it became comfortable and now I don't think about it except when it’s being accessed. It’s been six years and three lines of chemo. It’s used for all my labs and scans. I’ve had some bad experiences getting ivs put in so that’s why I appreciate it. Maybe you’ll be lucky and not have a recurrence and therefore have less need for a port.
I had Carbo/taxol every 3 weeks and was told ld lost my hair within 7 to 10 days .To be honest l thought lve got a lot of hair do thought mine might just go thinner. They gave me a voucher for a wig do l actually hot a really cute one different style than lm used to l asked advice about the cold cap and was told the can be very uncomfortable for some probably my big head candy told l would still probably lose my hair had first session no problem really didn't lose any hair then second session the lot came out. But l got various wigs and loved trying different styles plus my head a mess with scarring l had 3 previous brain operations so my heads not very nice like some womans l felt l.needed to hide my head really. Eyebrows eyelashes all my body hair. I lost. I had 6 months chemo every 3 weeks used to go sessions on a Sat at Christie's mcr traffic was much kinder plus it literally took all day. I took goodies got plenty of drinks and ate little and often throughout day and was never sick thank goodness. As soon as l stopped the chemo the hair grew completely back but white & curlyIt was actually lovely to be honest sorry l even started colouring again ,(,big mistake,) only advice ld give really is l had to get my eyebrows microbladed because they didn't grow back well. I'd have had it done before l had chemo because you can't do it for at least 12 months after
Not much good a drawing eyebrows in
But other than that l was fine used to feel drained 3/4 days later and yes l do have numbness in hands and feet, but hey l feel being NED since 2019 it was worth it.
Thanks Sheila for your reply and encouraging story! It’s great you have been NED since the treatment. I’m hoping and praying for the same thing. Have you been on any maintenance therapy? Xx
No l haven't just had checkups but not feeling my best at the moment got a bad back so lm being proactive and going next Thursday for bloods ,& consultation so fingers crossed. Never ignore things hopefully 🙏 it nothing but best to make sure. Good luck with everything my motto is keep buying the frocks and booking the holidays and looking forward to the future not everyone's the same as me probably more sensible but please god lm doing ok..love ,& big hugs SheilaFxxx
I was diagnosed in jan 2014 stage 3b like you. I joined the icon8 trial which was running at the time and that randomised people into having the chemo 3 different ways (both drugs every week, both drugs every 3 weeks and lastly one drug every week and the other every 3 weeks)
I was given the every week arm and coped really well, as deb said as part of a trial it took longer than an hour but was doable.
The results of the trial showed no real difference between the side effects from each arm.
Since the i had one recurrence and had 3 weekly chemo (same drugs) so pros and cons for each in my eyes 3 weekly less invasive but side effects seemed worse (short term) for me. Weekly takes over your life a bit but easier on the side effects
Hope that helps either way its doable but very individual as to how we react xx try and stay active drink loads of fluids and listen to your body xx
Did you have both drugs weekly in the trial? Do you know the results for one drug weekly? Any difference in efficacy when comparing one drug weekly to both drugs or to each other (carbo vs taxol) ?
From what you wrote i thought you were having both drugs just a choice of regimen? I am sure the results will be out there for single drug treatment as things have moved on massively in the last 10 years. I know they use weekly taxol now for second/third line so it must be efficacious but i dont know the stats to be honest. The team willbe looking to give you the best outcome with as little side effects, but having a bit of background info always helps. I drive my consultant crazy as i have to know how it ticks 😂
So sorry about your new staging. It must have been a great shock! I’m surprised they staged you after scans only as I was told staging could only happen after surgery and once pathology results were obtained from all the samples removed. Having said that I was initially told I was benign based on pathology. It wasn’t until I questioned it that they realised they had made a mistake …
I had chemo every three weeks and the cold cap. The cold cap isn’t pleasant at first but you get used to it. Having said that, I couldn’t imagine doing it once a week! Also my cannulas were always difficult so 3 weekly worked best for me. The cold cap meant I kept at least half my hair. I’m pleased I did it as my hair was v slow to grow back and was much thinner than before and still is. Hope this helps and sending you lots of best wishes! x
Laura I have had 6 months of weekly paclitaxol. I found it relatively easy and less side affects than having it every three weeks which I've had in the pastTo prevent neuropathy I iced up feet and hands during infusion and I have no neuropathy. This was recommended on one of the Facebook groups. Wishing you all the best going forward. Xx
What did use to ice your hands and feet? I’m not sure if my hospital would do it so I just bought icing socks, gloves etc. on Amazon which I plan on bringing with me if they allow me to. I really hope it’ll work for me as it did in your case.
Hi Laura, I bought those suzzie socks and mits from Amazon - they were brilliant
You shouldn't have to ask the chemo nurses - its your body and they never said anything to me when i wore them and if they did object (though caqn't see why they would)I would have still worn them!
I also bought a cool bag to transport them into hospital
It wasn't a nice experience but If i had to I'd do it again. Rather have six months of of this than a lifetime of neuropathy and taking meds. I know some neuropathy can get better with time, but I know some ladies where it didn't and they are on meds
Brilliant, that’s exactly what I bought, including the bag and extra ice packs to put in there. How long did one pair last when wearing it? Did you wear regular socks as well or directly the suzzie socks? Thanks! Xx
Hi Lara, I had 3 weekly infusions that lasted all day, my oncologist suggested using the cold cap so I went with her suggestion, it did add another 1.5 hours to my day, my hair did noticeably thin but it definitely saved me losing it altogether, make sure you have it right from the first treatment otherwise I don’t think it will work? make sure you take a hair band to protect your forehead and have a short haircut, mine nurses smothered my hair in Simple conditioner so it was completely wet, make sure you get a good tight fit all over your head as mine was loose down the sides on the first time and that’s where I lost the most hair, its only uncomfortable for the first 15 minutes then it’s ok but a bit cumbersome, if you’re having treatment during the winter take a nice cosy blanket as it can make you feel chilly, I’m on maintenance therapy now and NED , I have been lucky enough to come out relatively unscathed by all the treatment and I am sending positivity and love your way for your treatments 🙏❤️
Thanks so much for the suggestions and good wishes! I will cut my hair short this weekend and will use a hair band. Hopefully I will make it through the 18 weeks reasonably ok.
Bless your heart. Sounds like you have so much to contend with.
Wanted to share my story with you as I was diagnosed with HGS stage 3b in Feb 2018 & was offered weekly carbo/taxol ( not many are offered this) which I took up. I’m so glad I did. Obviously you get a lower dosage of taxol every week then, every 3rd week have the carbo too. You may tolerate this better as the taxol dosage is spread out. I did get neuropathy but very mildly. I had a port line fitted which helped a lot. It was great to see my nurses every week who always gave great care & support.
I have had 2 recurrences ( first one Nov 2019 & second April 2023). Had 3 big ops then chemo after each time ( last 2 just carbo ). It’s been a rollercoaster ride for sure but still hanging on in there.
I decided not to bother with the cold cap & had a wig which I was grateful for. The cold cap makes the treatment day longer & I heard it doesn’t always do the job. So, for me, a wig was the way forward
We are all different & best we make the choices which suit us best.
Wishing you all the best with your forthcoming treatment. Really hope it blasts that cancer away for good.
I am also hoping I will tolerate the lower weekly dose better. Though I think in my case I will have carbo every week as well. I will clarify tomorrow with my doctor. I am humbled when I read stories like yours. True survivors. I have been battling 2 autoimmune diseases myself for many years. I was lucky to be able to manage without harsh meds, even though the limited treatments and supplements I did have to take at times may have played a role in my current problem. It’s a different story now, hopefully I will find the strength to go through the battles still lying ahead. May you continue to have the strength to fight on! Hugs, L.
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feeling abandoned 
Hernia from debulking
Worried my Ca125 is 145 after 5 chemos, one to go.
Pain relief 
