Stage IIIa - complete removal of cancer 10/8/15 - adjuvant chemo Taxol/Carbo.
Completed my 2nd session last Monday 5th Ocober.
The pain in my legs has not been so severe this time but has lasted longer, the constipation has been helped by the Laxido that the doctor prescribed. Need to discuss sleep problems with the doctor (had my first good nights sleep for a week last night).
But I was not prepared for the feeling of vulnerability, I suppose it is the lack of sleep/tiredness/constant aches that I should have seen it as inevitable but as an active 63 year old it was a shock. Woke up this morning feeling entirely different so now have 2 weeks before the torture begins again!!
Used the cold cap for both sessions but the hair has started to fall badly so will need to decide whether to carry on but had a good appointment ay Guys with the 'wig' lady last Thursday where I tried on various colours/styles and walked away with a new head of hair that retails at £250.
Haven't had any 'pins and needles' in hands and feet that was told about but have had little 'electric shock' pains in my torso area - has anyone else experienced this?
Positivity is back!!!
Bev xx
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Bev155
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Hi Bev, Carbo Taxol is noted for constipation and pins and needless in hands and feet for most people but not for all. You can get pains anywhere so rest when you can but also try a short walk, every day but dont overdo it either. I have never tried the Cold Cap but have had this combo of drugs. I did lose my hair but had the wig in situ. Strangely enough when in Malaga a few weeks ago, I would pass a supplier on the way back to the Hotel and the wigs are good quality and reasonable. Here in Ireland, they cost a lot more and also in the UK. So you are two thirds of the way through and four more to go. You are getting there and hopefully the dreaded constipation will ease a bit for you. One tip I got was to eat a kiwi half an hour before food. Prune or Pear Juice is good, Pear Juice from the baby isle but it works anyway. Please do come online and let us know how you are doing from time to time.
I had taxol / carbo every week for 6 months with no side effects other that being very tired 3 days after the chemo. Everyone is different and it depends on what meds you have before each round of chemo. I had 5 different meds including benedryl to lessen side effects. Good luck to all.
That is great you must be so relieved to have it all done. Yes they tell us everyone is different but it takes a while to realise what that actually means. I wish you well for the future
Hi Bev, well done on completing No 2, only 4 more to go. I too experienced pains in my legs but had great difficult getting pain relief that I could stomach! I'm not too good with strong pain relief, I get dizzy and sick etc.
I thought the cold cap was supposed to help prevent hair loss!
Keep posting and good luck with the rest of your treatment.
Hi Ann - they say the cold cap is 50/50 and I still look like I have a lot of hair but it is getting very thin on top. I will need to make the decision before no.3 whether to carry on or not.
It sounds as if we're at pretty similar stages in our chemo (me a bit ahead having had my 4th chemo today) and staging of the tumour (I am a 3ai - or 3 ia, not sure which order they should go). After my second chemo my CA125 was 13 (and in the 60's after the first like yours) and the oncologist is very pleased.
It sounds as if we're suffering about the same hair amount loss with the cold cap too. I wear the little silk scarves I mentioned in a previous post and also sometimes a knotted bandana but I think I need something more now. I still have a fringe and hair at the back so I've sent off for a wider silk headband from Suburban Turban (love the name!) as it's specifically for patchy hair loss. If you're interested, I'll let you know how I get on with that. I may also go the wig route but Suburban Turban also have some very pretty scarves for complete head cover too.
I've also had to find my way with the constipation. I now take one Laxido the night before the chemo, one at lunchtime and night on chemo day and then lunchtime and maybe night on the following 3 days when taking the anti-sickness tablets if I still haven't had a bowel movement. Once I'm off the anti-sickness tablets, things seem to settle back to normal. As an aside, I've asked my Dr. to change my prescription to Movicol as it tastes better. I just think the Laxido must be cheaper so they prescribe that usually unless asked for Movicol.
Glad to hear you're feeling positive. I try not to think of it as torture as long as the constipation is managed. I just have a lazy day on the day of chemo and the day after and start to do a few things slowly on days 3 and 4.
I do have the pins and needles in my feet so you're lucky not to have that. I had a 25% reduced dose of Paclitaxol today because of that as my oncologist is pleased with the progress.
I had my debulking surgery on 10 June and have noticed my energy levels returning (excluding 3/4 days after chemo) immensely. I'm 4 months after surgery and you are only two and a bit so give it time. You will notice a huge change in another two months. Like you, I was a very active 58 year old but walked like an old lady for a while. Now back to power walking again!
Sending best wishes for the rest of your treatment,
Thank you Sarah for your reply it is so good to hear from someone of a similar age and in a similar place.
My hair is better at the back/sides and fringe but will definitely look at that website that you mentioned. I didn't think the cap fitted properly on the first visit and thought that was why I was losing it badly on the top but hearing that yours is the same it's probably something that happens. I do feel a little like a 'friar'. I am going to have my hair cut to a 'Judi Dench' on Friday just because I don't like hair getting into everything.
Have you continued with the cap?
The week of chemo is not good but week 2 and 3 I feel back to normal, will this continue or should I expect this to go down hill ? I have been booking trips and events into week 2 and 3 so hopefully will continue to be ok.
The Laxido is ok and just took one at night before I went to bed and that seemed to keep everything regular but I found the sleep problems worse. Was so tired but just continued to wake all the time - am going to ask the doctor for some stronger pain killers and something to help me sleep next time.
Yes, let's keep in touch Bev. As you say ladies on this forum have such different grades/stages and are at different points in their treatment so it's good to compare with someone similar.
I don't seem to be going downhill with each treatment - on the contrary I feel better because I'm getting closer to my last treatment on 1st December. The only thing that's getting me down is my hair, so maybe these new hair bands will help. Yes, I am continuing with the cap for the time being.
For me the key thing is to exercise as much as possible - walks with friends (no longer than an about an hour), yoga, Pilates and swimming. As I said though, I'm very lazy for the first 2 days, then just start doing light stuff days 3 and 4. I can't remember ever watching so much daytime TV! I might do a bit of gentle yoga at home during those days, say about 20 mins and then day 5 a nice 1 hr walk. Yes, weeks 2 and 3 are still good, so carry on organising things.
I will say that I've had disrupted sleep since hitting the menopause and it's now really not much different, but if yours is more serious then probably a good idea to ask for something from the doctor.
Have you changed anything in your life, e.g. diet/supplements? I have read so much (all there is out there I think!) about it all and just ended up confused (alkaline diets etc.) so I am just continuing to eat healthily (as I did before, but perhaps just upping it a bit) and no supplements (some of these are not good to have during chemo I understand). Raw ginger is supposed to be good so I often have melon and grated ginger as part of my breakast and the odd ginger tea. I can't give up my English Breakfast Tea first thing in the morning and a nice coffee for elevensies. I'm even enjoying a nightly long weak G&T during weeks 2 and 3 (as wine tastes strange - a bit strong). I'm a great believer that you should pamper yourself with what you want to eat and not force down things you're not enjoying.
I will send you the name of a website with good prognosis figures for Stage 3A, which is what I'm working on! Others can be so negative. We don't need that, do we!
Someone bought me 'eat to beat cancer' but does seem very severe and a total new way if life and don't think I am quite ready for that yet.
I am trying to eat healthy but do seem to have a big yearning for carbs!!
I have never been a big meat eater so just being more vigilant about freshness, and trying very hard to drink loads.
As someone who liked a little tipple in the evening I made the decision at the beginning to not drink unless I was 'out' and have managed to stick to it so far.
I think the chemo makes you have a big yearning for carbs - maybe to soak up the drugs! I also think during chemo you should have what you want. You're doing the right thing in drinking loads, as I am, as it flushes the drugs through.
I think you're right about trying to only drink when you're 'out'. I am maybe a bit naughty, but it is a very weak G&T and I gather from this forum and the Inspire forum which is mainly American that it's ok.
The website I mentioned is Healthline.com with Outlook for Ovarian Cancer.
As you will see, the prognosis for Grade 3A is 59%, call it 60%, which I reckon is not bad, especially as we're definitely going to be within that 60%, aren't we Bev?!!
60% is good and you enjoy that g&t. The oncologist told me it was ok to drink but to just be careful.
I had a hospital appt yesterday as I have raised calcium levels and the doctor told me that it may give me problems in 20 years - I told him 'thank you very much I will take that!!!'
Yes, we won't be moaning about relatively little niggles like that will we! They'll have something to remedy that by then anyway, so we'll probably be firing on all cylinders!
This will make you laugh: I took on board what you said about freshness when we were talking about diet, looked at some slightly sad carrots in the fridge which I would normally have peeled and used, but threw them in the compost bin and got my son to get some more as he was doing some shopping for me! Quite agree, we should be using the best possible produce with maximum vitamins!
Just an update on the hair front. I may well end up with a wig but I'm going to try and last out as long as possible. I received the silk scarves from Suburban Turban today and I am so pleased with them. The crinkles are the secret I think. They add height and are so adaptable. I'm sure they'd also look lovely with your 'Judy Dench'! They can become a hat if you want but I have just made a wide hairband from them and there's nothing hanging down as they have little self-forming ties to secure them when you wind them twice around your head. They don't look much when they arrive and you wonder about the price but once on they have made my day! My husband even said I should keep up the trend post cancer!
On the eyebrow and eyelash front, the week before my 4th chemo I bought a nice brown natural looking eyebrow pencil (my brows are patchy) and also some natural looking brown eyeliner as my eyelashes are also patchy. I never usually wear either of these and am learning to have a steady hand with the eyeliner (just under the eye and slightly smudged, not above as the eyeshadow is enough). They have made a huge difference so I'm even using them just around the house now to make myself feel better. As someone who normally just puts a bit of concealer, eyeshadow and lippy on in a couple of minutes, it all takes longer but I think it's worth it for the feelgood feeling the rest of the day.
No G&T's during chemo week, but I'm looking forward to getting back to them next week! I made some butternut squash soup today and that felt very nourishing! Yesterday was my 'wiped out' day (never the same, but any time days 2 - 4 after chemo), so it was nice to do something positive.
Glad the scarves are good. Had my hair cut and hate it!! But it will be better for my hair. My hairdresser cut my wig and so pleased with it, it actually looks like my hair did before August.
I still have a lot of hair on the back and fringe just very thin on top so I bought some Viviscal volumising hair fibres - coloured - and it is brilliant - you just sprinkle on the thin bits and it colours the scalp and thickens the hair. My daughters couldn't believe how good it was. I am taking the Viviscal tablets also - I know it's early days but it's worth a try.
Have you read that other lady's report about taking ibuprofen 3 x daily to aid the destruction of the cancer cells - I am going to ask the oncologist on Thursday.
Also very strangely my finger nails have never been so good.
Take care and rest - let the family pamper you until you feel better.
Sorry you're not keen on your new hairstyle - you may adjust to it - but glad the wig is successful.
Your own hair sounds similar to mine so I will look at the Viviscal hair fibres and tablets, although I've stopped taking any supplements at the moment (apart from Adcal Vitamin D - which the oncologist is happy with - as I have osteopenia (nothing that bothers me, but it was discovered during a routine bone scan when I changed to Letrozole after Tamoxifen as Letrozole can deplete your bone density. I think chemo 8 years ago for breast cancer may have caused this and I was thinking that maybe the chemo might ironically help your raised calcium levels - don't know but it seems to add up). I was even reading the other day on either this forum or Inspire that excess Turmeric causes the chemo to not work as effectively, whereas this is often being hailed as a 'wonder spice', so I'm continuing everything in moderation as I've always eaten healthily anyway.
Yes, I did read about the Ibuprofen, but I've felt so confused about what different ladies are taking that I'm just ending up following what the oncologist and I agreed - to stop everything except the Adcal until after chemo. I'll be interested to hear what your oncologist says about Ibuprofen though. If he/she does agree, I'll check it out with mine as it may be a very recent discovery.
Yes, my finger nails are still growing well. I just have a bit of a horizontal ridge on one thumb nail and noticed since chemo 3 that my big toenails had a bit of discolouration last time I removed the nail varnish. During the previous chemo I was advised to put Mavala Barrier Base-Coat on my finger nails before my varnish (it comes off after one or two days if you don't put varnish on top) because those chemo drugs (like ours now) can cause ladies to lose nails after time, so I've done the same this time. I didn't always wear nail varnish before, but all this pampering can take your mind off things. The last couple times I took the nail varnish off, I also put rose oil or almond oil on my nails and let it soak in for about an hour before applying the other things. I'm sure it's helped that ridge on my thumb nail when I look at it now. I'm also making sure I put lots of footcream on before going to bed as peeling skin on the feet seems to be another problem. I must keep all this up post chemo!
My skin is very good too - another lady on one of the forums said that after chemo friends commented that she looked 10 years younger and I remember that from last time, so maybe there are some extra benefits to this chemo. Also, the chemo worked well for me last time, so there's no reason for it not to work for us this time. I like the image of it being a lovely white cleansing liquid going through our veins rather than a poison.
You're right about letting the family pamper me. I'm not very good at allowing them now as I had to rely on them so much after the op. but I must stop thinking I'm back to normal as soon as I'm over my 'grotty' day. Thank you for reminding me!
Sorry I go on a bit, but I write as I think and I'm always too detailed with a brain going off in all directions!
Good luck with your appointment with the oncologist on Thursday. Let me know how you get on.
Hope you are feeling better and that the horrible week is over and you can join the human race again.
I have just had a bone density scan because of the high calcium levels and been told that have osteopenia also but that is just being monitored. They think the calcium is caused by parathyroid problem but we are going to address that next year.
But good news my CA125 is down to 26!! So going into chemo on Monday feeling very positive.
Yes, thank you, the horrible week is over and I'm back in action!
Well, we have several things in common, now with the osteopenia. I haven't actually noticed any physical problems but just keep active with the theory that strong muscles will support those weaker bones. I expect years ago lots of people had osteopenia (or even now, have it) and don't know. It's only that we've had cause to have bone density scans.
Fantastic news about your CA125! What did your oncologist say about Ibuprofen?
Another positive - I spoke to a lady at Ovacome last week, who also mentioned that Grade 3A is not such a bad place to be - there aren't many of us! I'm hanging onto that and am determined to beat this disease. So many ladies are doing so many way out things to try and prevent recurrence and I wonder how stressful that is in itself. Having studied a lot of the blogs, one key to beating this seems to be to minimise stress in addition to a generally healthy diet and lifestyle. Have you thought about going to the Penny Brohn Centre in Bristol? I am considering going sometime next year when I'm fully recovered. I will first of all find out if there's somewhere nearer to me as they run satellite courses sometimes.
Am now making an appointment to get a natural hair wig and am looking forward to it! I think I will need it sometime soon, particularly for the Christmas period.
Have a good weekend and I'll be thinking of you next week.
I've been thinking of you since last Monday and wondering how you're feeling a week and a bit post chemo?
I will say when I look back that no. 4 took a a few days longer to recover from for me, despite trying to get back to normal after a week, so I would now say about 10 days, rather than a week to arrange anything too energetic. On the plus side, it's great to feel that I'm nearer to finishing no. 6 (no. 5 next Tuesday).
Now that I've made an appointment to get a wig next Monday my hair has stopped falling out - probably a coincidence and maybe more due to the reduction in chemo dose, but thought it was weird! I still need a wig though.
The chemo was cancelled last week as I had a blurry right eye and they didn't want to take the chance that it was something to do with the 'treatment'. So off I trotted to St Thomas to get my eye tested - it is vitreous detachment and not related - just something else to add to my medical record.
I have no. 3 today. They have promised me that they will try and catch up but had this goal in my head that it would all be finished by the end of 2015 but keeping fingers crossed.
Don't I sound down!!! But I am not I promise - just impatient.
I don't know if it is the hair supplements that I am taking but my hair is growing - don't think the shiny scalp bits but the rest def is.
No, you don't sound down - you're obviously just dealing with it and understandably impatient!
Hope all went well yesterday. Despite feeling yucky for a while, it feels good to get another one out of the way. Just chill out and do what you want.
I'll be trying pear juice, in addition to the Movicol and Dulcoease, for the constipation as someone on this forum recommended it. It's still my biggest problem - it sounds as if you've got that sorted. Either the reduced dose or Vit B supplements (or both) seem to have helped my pins and needles.
Sorry, I must have pressed the 'submit reply' button by mistake!
To continue:
I've just realised that we're not corresponding privately. I do so with another lady on this forum and it comes up with 'recipients' and her name only (you can obviously add others if you want). Do you know how to change our conversations to that?
Just looked at who lives in my area and came up with your journey. I was stage 1c and had complete removal Sept 2014 with 6 months Carbo/taxol finished April 2015,so far ok, living for the day!
I had bad constipation and took senna if I didn't go after 2 days, always had a result and Docusate kept my stools soft,(lovely subject) !
I think the vulnerability comes as standard, I feel very vulnerable now and at times feel I am waiting for a re occurrence, but, I think this tends to be our life from now on,but you have to be positive and not let it get you down.
Didn't sleep very well as I had the night time fidgets and now with the hysterectomy get the night time sweats, but I sleep with a fan on at all times and it is fine.
Didn't bother with the cold cap,got a wig in situ, my son shaved all my hair off and it has grown back fabulous! My age (59) means it is white, but looks blonde and I am keeping it short with lots of wax,better than it has ever been,so there is always hope.
I have just completed my 4th cycle with 2 more to go. Not been so bad this time as was prescribed coedine and sleeping tablets at night, can manage the muscle pain during the day it's the 3 and 4 am's that are bad.
I went through the same type surgery that you have had and now after 6 chemo treatments I am waiting for my pet scan to see if any more cancer remains. There are better days ahead but you may feel achy and weak after each treatment and even may need some fluids to get you feeling better. I had indigestion that sent me to the ER. They thought I was having a heart attack but ruled that out after many tests. I dreaded the indigestion more than the other symptoms. Hope this info lets you know that others have experienced the same feelings that you are having so just know there are good days ahead.
I have also completed my 6 cycles of chemo and have my ct scan in 28th and then oncologist on 4th Feb and if all ok 3 monthly checkups. I have felt so well after the last chemo so hopefully onwards and upwards. Hope your scan goes well.
just wanted to offer a couple of things that helped me through my journey on the carbo/taxol traeatment - Clarnico mint cremes ( available in supermarkets) for constipation, and ginger biscuits for nausea.
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