Bladder pain and carbo-taxol

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Kate79
Bladder pain and carbo-taxol

Hi ladies,

Hope everyone is well. I just wanted to ask a couple of questions. The first being: recently i have really bad pain whilst weeing and it makes me tense up really bad i feel like i'm sitting on a knife (not that i ever have but that's how painful it is.) I'm just wondering if anyone else suffers from this? I have told my oncologist and she said it's some kind of tissue (i think, was a long medical term) and to take co-codemol but it's really very very painful. I just wondered how long it lasts for?

Also i'm finding it hard work with the dialtors, how long do we have to use them for? everytime i go to the hospital i forget to ask but i'm finding it painful to use them at the minute. Sure it's 2 years? :shock:

Also as in the heading, i'm starting my chemo on Monday the 29th and it will be carbo-taxol and i have spoke to Bethany about side effects but i just wondered how other people found it? I know it will be horrible but i don't want to not have a life for 18 weeks. I'm also doing a clinical trial called cediranib and wondered if anyone had any info on it or knew anyone who was on it?

Thanks,

Love Kate xxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

Tequila189

Hi Kate

Good luck for Monday hope it goes okay. I can´t answer your questions about Carbo-Taxol or with your trial drugs. However when I was being given Cisplatin I too had such pain when weeing I literally had to bite something. My Radiotherapist insisted it was normal to have a little pain until I said I really couldn`t cope anymore and she tested my urine, turned out I had a really nasty infection due to kidneys not working properly. It may be an infection ask to be tested just in case! If not then make sure you are drinking loads of water, I was told at least 4 litres a day which literally means the loo is your best friend but it stops the pain, eventually.

Good luck hun, I have my 3 month check up on Monday too, will be thinking of you.

Lots of love and positive vibes

Oterlie xxx

2007 Last NHS smear, negative
May 2010 diagnosed Stage 2bcc Squamous Cell Invasive Cancer
28 x Radiotherapy, 5 x Cisplatin
4 x Brachytherapy
Lump in breast, Phylloydes tumour, Lumpectomy and removal of 2 lymph nodes 8/9/10
27/09/10 First all clear!!!!

fatcat57

Hi Kate

Can't give you any advice on your upcoming chemo, but I agree 100% with Tequila - drinking as much water as possible really helps to take the "sting" away. Also - ask for some better painkillers and make sure they do a urine test because you might have an infection.

Bad news about the dilators, I'm afraid. In my instruction booklet it says they are to be used for life :evil: . As I said before, my vaginal necrosis is really painful and even the tiny dilator was an ordeal. You might take a leaf out of my book and get some "toys" which are not really for vaginal use, but are more supple. But - they always say use of dilators shouldn't be painful so make sure that the doc/nurse whoever[i] knows[/i] that you are suffering.

Best of luck with your chemo.

Big Hugs

Remember: "the game's not over until the fat lady sings".

Muttley

Hi Kate, Good luck with the chemo on Monday. I really hope you don't have too many of the side effects. I only had the four cycles, (a couple of weeks after the 6 weeks of cisplatin/radiotherapy). I found some of the side effects got worse after each cycle and some eased. But by the time the next lot of chemo was due, quite a few of the side effects had calmed down. I did find I could fall asleep at any time/anywhere. I still have some long term side effects from the chemo (and the radiation - I have been told I have to use the dilator forever. The internal tissue keeps sticking together so have to use it on a very regular basis. Also the bladder pain I can totally empathise with you) However, I am back at work, not quite full time yet.... Now 9 months on, only thinking about it do I remember the difficult days... Once it's put into perspective it's doable. If you have any questions at all feel free to pm.
Take care, will be thinking of you. xx

08/09 diagnosed 1B1 adeno cc with extensive lvsi,
6 weeks chemoradiation & 2 brachy then 4 cycles carboplatin/taxol.
03/10 all clear
2012- HBOT x 50 sessions (for radiation damage)

spike
spike's picture

Hi Kate
Best wishes with the chemotherapy.
I have a lot of bladder damage and was having a lot of severe pain. I have had several infections but them clearing didn't solve it. I now take oxybutinine twice a day and it has really helped. The explanation I was given was that my bladder was going into spasm which the oxybutinine stops. I also take a small dose of amityptriline at night which encourages my bladder to hold more. Initially, the amitiptryline made me really tired but doen't anymore. Only side effect now is a very dry mouth. Hope this helps. Do get checked for infection though too.
Love Sarah

diagnosed with stage 1b october 2008, hysterectomy attempted and failed november,chemo and radotherapy, suspected recurrence, clear mri july09 biopsies taken july 09 showing scar tissue. Bladder cancer diagnosed 2010 ( possibly radiotherapy response, very unusual). Currently all clear but left with continence issues.

Kate79

Hi ladies,

Thanks for the replies and the goodluck messages and also good luck for your check up hun xxx

I don't want to sound like i'm disagreeing with what you all say it's just i know the pain isn't an infection as i've had lots of urine tests in preperation for the clinical trial (including a 24hr sample which i only did last week) also i've been tested for infection and have recently had 2 weeks of antibiotics including metronidizole.
I drink loads and loads of water i always have, when i took my last urine sample in the nurse asked me if i'd actually done a wee in it lol as it was so clear. I don't really drink much else apart from water. I can't really have any stronger painkillers as i'm already on very very high ones including a fentaynl patch which is very strong, mefedemic acid and prescription only co-codemol which are really strong too. I think i will have a word with my pain control nurse anyway and see what/if anything she can give me for the pain. It's not cystitis it's further up, also it's not stinging it's painful like stabbing pain. My oncologist said it was something in my bladder tissue which had shown up on my MRI but not cancer. I will also mention the dilators as because my tumour didn't shrink that much it may be ok to go down a size just until the chemo starts shrinking it in a week or 2!

Thanks for the replies anyway and hope everyone is well xxxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

Bethanydi

Hi Kate,

Sorry to hear that you are in such pain. Definitely mention it to your pain team and see if they have any further suggestions on pain control. Hopefully whatever is causing the pain will respond well and quickly to the chemo you are starting.

I hope it goes ok tomorrow for you. It will be looooong day, so make sure you take plenty of things to keep you occupied. Although, I found having a cheeky 40 winks killed an hour or so.

Let us know how you get on.

Bethany x :wink: x

2B adeno, Apr 05 aged 31. Ovarian transposition-failed :(, chemorad & a long brachy. Probs since, DVT, rad damage. Rec Mar 09 surgery & CarboTaxol June-Oct 09. Follow ups every 6 wks. Currently on LDN

LouiseUK

Hi Kate

Just wanted to wish you all the best with your treatment - hope you don't suffer too much with the side effects of chemo and that your bladder pain gets sorted.
Thinking of you, take care

lots of love
Louise xx

Laser treatment 95/96 for mild to moderate CIN. All clear smears until March 2010 then diagnosed CIN3. Biopsy showed cc 1b2 grade 3, RHND on 9/6/10, 16 lymph nodes removed. Given the all clear on 22/6/10 - no further treatment!! :D

Kate79

Thanks ladies,

Beth - i'm going to take my laptop as they have free wifi there so that'll keep me ocupied plus i'll prob buy a magazine and i even considered taking my christmas cards so i could write them out lol. I will definately be trying for a sleep as like you say will pass some time on!

Thanks Louise :)

xxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

hairbrained70

Thinking of you my darling and hope today goes quickly for you. love always Lisa.x

cc may 07.surgery. lymp nodes pos.chemo,radio,brachy,abdominal abscess-surgical drainages.complications with kidneys from treatment.Stent in. aug 08 reconstructive kid surg.feb 09 stent back in..june 09 stent out and so far so good!!!

spike
spike's picture

hi kate, hope today has been ok. I have to say the hospital didn't offer anything except pain relief and it was the gp who worked out the oxybutinine. I had reached a point where morphine wasn't working and I couldn't sit down or use dilators. Maybe worth a try?

diagnosed with stage 1b october 2008, hysterectomy attempted and failed november,chemo and radotherapy, suspected recurrence, clear mri july09 biopsies taken july 09 showing scar tissue. Bladder cancer diagnosed 2010 ( possibly radiotherapy response, very unusual). Currently all clear but left with continence issues.

jesslovelsondon

Hi Kate,
I am not sure if I've replied to a post of yours before as I have been doing more lurking than posting, but I have been following your story. You are so brave and strong, and I really feel for what you're going through, and still remaining so able to give positive replies to other people.
I hope that your pain relief kicks in soon and the chemo too!
Lots of love, Jess xxxx

Diagnosed 1b1 August '08. Trachellectomy 31 August '08. Lymph nodes clear 10 Sept '08. Success! =)
First 3-month checkup Dec '08.

Kate79

Hi Sarah,

Sorry i forgot to post regards last weeks chemo. It went garbage lol. My chair was booked for 10:30am i finally got in it at 3:30pm (after walking around in the cold for 2 hrs as the waiting room was full to bursting!) I didn't see my little girl as by the time we got home it was 10:15pm grr so she had to stay at her nanas. (Good job she wasn't with a child minder isn't it!)

The chemo itself went ok though apart from on the Weds i messed up my steroids (wrong dose, not enough) and couldn't lift my head off the sofa! But i've been ok luckily my mother-in-law was at my house the next day and read the dosage and realised i hadn't took enough! (Won't be making that mistake again!)
I did mention to my pain nurse about the tablets you're on and she said i could try them if my current ones don't work but tbh the pain has been subsiding in my bladder now it's in my stomach were i think the lymphnode is!! hopefully it'll all bugger off in the next couple of weeks!

Jess - Thanks very much i always try and help where i can. I remember when i joined Jo's and i was terrified! We all need a sympathetic ear and non judgemental people when we're frightened and that's what i try and do if possible. Plus i was kind of thrown in at the deep end so i've had most of what can go wrong at the beginning! :roll:

Sorry to read your having bleeding again, i've just read your thread. :( Hope it's nothing and you get it sorted.

Lots of love Kate xxxxxxxxxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

spike
spike's picture

hi kate, glad the pain in the bladder is receding. I hope they are sorting your timings out better for chemo days too.
Mind you don't do too much when those steroids take hold!
Take care
love Sarah

diagnosed with stage 1b october 2008, hysterectomy attempted and failed november,chemo and radotherapy, suspected recurrence, clear mri july09 biopsies taken july 09 showing scar tissue. Bladder cancer diagnosed 2010 ( possibly radiotherapy response, very unusual). Currently all clear but left with continence issues.

Kate79

Hi Sarah,

Should be better next time. Tbh the hospital opened it's new treatment center that morning so it wasn't really anyones fault but it was a nightmare! By the time it came to me having the chemo i was in tears as i was just so tired. We'd left home at 6:45am to get there early so it was a loooooooong day. My husband told the nurse we were a little upset due to all the waiting and she said next time she'll write on my notes to try and get me in on time ish. I'm not a ogre and i don't mind waiting an hour or so but 5 hours was taking the pee!!

xxxxxxxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

fatcat57

Hi Kate

Sorry you have a pain in your tummy, but it’s much better than having a pain when you wee. I wouldn’t wish cystitis on my worst enemy – well, OK, maybe on her :twisted: but not on anyone else LOL. Having just had an EUA with biopsies, which left me with about a ton of gauze up my lala for 16 hours, making peeing a slow, painful and frequent process, I can empathise. Was I glad when they pulled the bugger out!

Shame your chemo was b*****d up. Strange as it may seem, I really enjoyed having my chemo as an in-patient, arriving on Tuesday morning and leaving Wednesday at noon; I felt really well looked-after and the food in my treatment centre is great. I also had some really nice room-mates. Mind you, it might not be ideal for women with young children.

Here’s hoping the rest of your chemo goes OK.

Big Hugs

Remember: "the game's not over until the fat lady sings".

Kate79

Hi Fatcat,

I understand what you mean regards treatment, i think we always feel better when something is being done as we all know what the waiting around is like. Children under 13 aren't allowed in the treatment center at the hospital where i'm being treated. (Obviously unless that's what they're there for).The pain has subsided no end, i'm hoping it due to the treatment but it's more likely down the the tablets i've been taking. I will leave it another week or so and try coming down on my pain medication and that'll tell me if it's the tablets or shrinkage!!!!

I know what cystitis is like i used to suffer from it when i was younger and it's horrific. The pain wasn't in my tummy it was more in my cervix or wherever when i wee'd it was awful. Hope your doing ok anyway,

Love Kate xxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

spike
spike's picture

i remember doing my christmas cards on a chemo day!
hope you are having a better time of it this week
love sarah

diagnosed with stage 1b october 2008, hysterectomy attempted and failed november,chemo and radotherapy, suspected recurrence, clear mri july09 biopsies taken july 09 showing scar tissue. Bladder cancer diagnosed 2010 ( possibly radiotherapy response, very unusual). Currently all clear but left with continence issues.

kitty37

Kate

Just wanted to wish you well for this stage of the treatment, and sorry to hear things haven't been going so smoothly. Hopefully the next sessions will go a bit more smoothly and you can have some time to enjoy christmas with your family.

kx

[size=100]cin III lletz treatment 2005, diagnosed with CC stage 1b June 09, spread to lymph node in neck through abdomen confirmed Sept 09, chemoradiation & Brachy x2 completed Nov 09.
9 month post treatment 'all clear, 1 year 'all clear' nov 18th 2010'

Kate79

Hi Ladies,

It's only once every 3 weeks Sarah so i'm due cycle 2 next Monday - the 20th. Not looking forward to this one as this one will be when i lose my hair :( i'm trying to stay positive but i'm obviously not thrilled at the prospect. It's already started coming out in strands and i've got my wig sorted. I think it's because of the weather and i know it's going to be bloody cold lol i'm such a whimp when it comes to being cold!

I went for a weekly checkup yesterday due to being on a drugs trial and went to book my chemo and wasn't too happy when i found out my chair is booked for half 1 in the afternoon! so much for putting me in for an early appointment. Means 6 hrs of treatment plus an hours drive home and that's providing i even get in on time grr, the treatment center is open till midnight so they arent in any rush!!!

Nevermind sorry for moaning, hope everyone is doing ok.

Lots of love Kate xxxxxxxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

hairbrained70

Moan away my darling...Thats just ridiculous, especially since you asked for an earlier apointment and live a good distance away. what a long day and the build up in the morning just waiting to go in. I am thinking of you ALWAYS my lovely and we are all here.Lisa.xxxxxxxx

cc may 07.surgery. lymp nodes pos.chemo,radio,brachy,abdominal abscess-surgical drainages.complications with kidneys from treatment.Stent in. aug 08 reconstructive kid surg.feb 09 stent back in..june 09 stent out and so far so good!!!

Cocoharry

Hi Kate,

Just wanted to wish you good luck for your next round of chemo on Monday. I can't relate to losing your hair but you sound like you've been preparing for this as much as you can and whilst I have no idea, I hope that when it happens it's not as bad as you might anticipate. As for getting a cold head, have you invested in some of the lovely knitted hats you can get in the shops at the moment - there are some really nice ones and you have a good reason to treat yourself :wink:

Good luck hon, thinking of you strong lady :wink:

Lots of love
Rachel xxxxxx

Diagnosed with stage 2b cc in July 09
Transposition of ovaries
5 weeks of chemoradiotherapy
2 Brachytherapy
Finished treatment in October 09
MRI scan in March 10 and have been given the all clear 6th April 10
Treated at QE and Freeman in T&W

Kate79

Hiya ladies,

I'm not too thrilled Lisa but got told basically that's the time i'm getting so tough poop! Not impressed as i won't see Abi that night (will be lucky to get home before 9 )but she understands.
The receptionist said to be there for 9am :lol: to which i said that's ridiculous and she agreed and said maybe 10:30 would be fine to which i replied ok walked off and said to Rich we'll set off from home at 10:30. I've been around hospitals long enough to know how they work. As long as i'm there in plenty of time to get my bloods done i'll be fine. And seeing as where i'm being treated only specialises in cancer - bloods only take 40 mins to 1 hr to come back so i'll get there for 11:30 and that'll still give me 2 hrs and that's providing the person in front is all on time. :roll:

Rach - i've bought 2 hats a lovely pink panther one and a nice wooly one plus i've got my wig! i'm prepared as much as i can be so just have to get on with it and remember chemo isn't pleasent but it's being done for a reason and my hair is the least of my worries!

Hope your keeping ok chick!

Lots of love Kate xxxxxxxxx

Feb2010 - Servere dysk & pelvic pain
Apr- Colp, biopsy & MRI CC 3B
May-June 28 radios
No chemo/brachy
Oct -MRI,Tumor still alive plus lymphnode in stomach
Nov10- Mar11 -T/ment - 6 chemos carbo/taxol plus cediranib drug trial
Treated @ Christies.

LouLouH

Hi Kate,

Just read your post and cannot believe that you have got a late one again! Well, I say I cannot believe it but having had chemo there myself I really can believe and the wait that goes with. I don't blame you for not leaving until 10.30am it is ridiculous to expect you to be there for all that time before.

Hope all goes well and sorry I cannot meet up with on Monday.

I have heard some people say that they shaved their own heads before they lost their hair fully so that they felt they were in control and could do it in their time. Not sure if this is an idea that you might find useful. I didn't loose my hair with Cisplatin but can understand that it is not something that you would choose but you have the right attitude that it is a means to an end and this is going to get you sorted!!

Let me know how you get on mate.

Love

Lou
X

June 2010 - Diagnosed Stage 2b Adenocarcinoma N1

July 2010/August 2010 - 30 Radiotherapy & Cisplatin Chemo 6 cycles

Jan 2011- Pelvic Exenteration Feb - Clear margins = All clear 

May 2012 Mets confirmed

June - Oct 2012 Carboplatin & taxol chemo and CIRCCa Trial

April 2014 Remain stable  now 3 monthly scans - beating the odds given to me!