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Piclataxol Pixies - come and join in!

pinkylou
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Re: Piclataxol Pixies - come and join in!

Hi starting epirubicen today. Anyone heard from pam ? X

Angelfalls
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Happy New Year, Pixies! Hope you're all doing ok and had a good Christmas.

I was just wondering if anyone's heard from Pam since she had her scan results...

Take care xxx

pinkylou
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sarah66
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Hi all , hickman line now in , long day at hosp waiting around but was not too bad at all . Feeling stiff and tender today woke up at 3am needing pain relief then spent the rest of the night on the sofa
( snoring husband!!) Taxol to start next thurs.
Sarah 66xx

diddy1953
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Hope all went well with the Hickman insertion, you will be so glad that you had it done when you start the chemo.
Bit sore for a couple of days then fine after. Elainexx

scottishlass
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I am off for my 4th Taxol tomorrow and my hair is slowly falling out and is always showing up on the pillow or on the shoulders of my jumper! Not got round to ordering my wig yet but have plans to look for swome new headgear. I seem to have good days and bad days. Some days I can hardly move and feel nauseous or feel hot. Ohter days I have the energy to bake or take my daughter out shopping as she is over from abroad for Christmas and I do not really want to waste a moment as I do not see her often. Just hope all of you on Taxol are doing okay. Hugs to you all, val

pinkylou
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Good luck Sara x

sarah66
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Hi all , Hickman line going in tomorrow , chemo hopefully next week .

Sarah66

pinkylou
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Hi Sarah , I had a port fitted , not sure of the difference between a line and a port but it was the best think I have ever done. Taxol was ok not too bad just hair loss and tiredness xxx but if you are using cool cap should be ok. X louise

pinkylou
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good luck with your scan result today pam will be thinking of you. X

diddy1953
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Hi Pam
My thoughts and prayers are with you for the 28th.
Elainexx

diddy1953
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Hi Sarah
I had a hickman line fitted and although I picked up an infection in the line and had IV anti biotics, I am fine now.
The benefits far outway the trauma of crappy veins and canulas, especially with weekly chemo. I like you am having 12 sessions of taxol and then will be re-scanned. SE are not too bad so far. Tiredness, with me it hits like a wave of complete exhaustion. Nausea, but it seems to be under control, although I am up and down with food. So I eat when i feel like it and small amounts seem to suit me better. On Monday it will be my sixth one.
Good luck with everything and let us know how you go on.
I manage the line well, using a hibiscrub and I always cover the exit site with a clear waterproof dressing. Helps to keep it sterile.
Elainexx

sarah66
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Hi all unfortunately could not start taxol today due to crappy veins!! now got to wait and have a Hickman line fitted. Probably start in Jan 2013 now, Anyone got one of these ? and any tips for managing it. No swimming for me now, anyway don't know if i could manage it. Could always move the teatowels off the exercise bike in the kitchen !!!

Sarah66 x

Angelfalls
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Sending big ((((hugs)))) to you, Pam, and keeping everything crossed for 28th. xxx

Pam170
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Hi Angelfalls and all you Pixies.
I finally had my scan on Tuesday after a `Jobsworth` in Admin told me on Monday that it would be another 4 weeks even though it was urgent. Some of these people in Admin think they are so special. Anyway phoned again and spoke to someone else who fitted me in the next day.
The Onc said because I had not been well and my liver bloods were worrying he thought there may be progress, still he should now have the scan results when I see him on the 28th which will give a better picture.
I started Xeloda yesterday 1800mg twice daily so I`m hoping for good results, It seems to work well for a lot of secondaries.
We plan on a quiet Xmas, going to our Daughters for Dinner but will be home for tea. On Boxing day lunch going to Grand-daughters for a buffet at lunchtime but will only stay a couple of hours. We will be `slobbing` around the rest of the time, eating and drinking when we want and generally doing nothing.
To all you lovely ladies, have a lovely Xmas and a Happy, Healthy New Year. Thanks for all the support given to me during the past year.
Hugs,
Pam.xx

Angelfalls
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Hello everyone! How are you all doing?

Pam - Any news on that missing scan? Hope it all goes ok and your appt. on 28th goes better than you and your onc expect. I hope you don't mind me asking, but why does he think you have progression if you haven't had a scan done yet? Anyway, I hope you'll be feeling better soon. And if you do have to start Xeloda, I hope it'll be gentle on you and tough on your cancer.

Diddy - Hope you're fully recovered from that infection now and coping ok with the Taxol. Have they managed to get your anti-sickness meds right yet? It makes such a difference when you can get that nausea under control. So that you can enjoy more chocolate fudge cake and ice cream!!! 😉

Sarah - Good luck with the Taxol. It's a much easier regime than FEC for most of us, but be gentle on yourself until you know how you're going to feel. Hope the cold cap and the tx will work well for you.

And I hope that all of you have a great Christmas with your family and friends and that 2013 will be a good year for all of us. xxx

sarah66
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Hi pinkylou, i think i will be having a mastectomy the onc did say if the recurrance shrank enough i might not need one but i think this maybe too risky to leave it, been bitten twice thank you ! they will scan me after 12 weeks i think to see if taxol is working, what are the side effects like? the FEC i had in 2008 made me quite nauseaous ( can't spell!)
Hope things go the way you want

Sarah 66 x

pinkylou
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Hi Sarah , as I said , I am the same as you , I used the cold cap when I did the Fec in 2008 and it worked very well , hair just thinned , I knew but no one else knew. So I am sure it will work for you, I did taxol and avastin for 12 sessions back in march weekly , it worked for 12 weeks then it stopped so I changed, I didn't use thd cool cap and it gradually thinned over the 12 weeks , I was really thin by the end of it , but I think if I had used the cold cap it would of been fine. Keep me updated , I hope it all goes well for you. I am just about to do the horrible red devil , the e of the Fec again , so I am going back to the cold cap. I am hoping it will blast these lung mets which have stayed stable this last year. But they won't let me have the reoccurence removed in my breast until the lung situation is sorted, I understand that they have already agreed that you can have a mastectomy ? Hugs x

sarah66
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hi all, i am starting Taxol weekly for 12 weeks plus Avastin also for recurrance of TNBC and small lung met. Had bc in 2008 not quite reached the 5 years clear! . I have 2 children 11 and 16 and i work for the NHS in mental health, currently on sick leave.

I am going to try the cold cap , anyone got tips or advice , how bad are the side effects, i had 6 x FEC in 2008 SNB, WLE and rads.
I am going to get wiggy tomorrow in case the cap does not work.

Best wishes to all
Sarah66

diddy1953
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Hi Angel Falls, and all other Pixie chicks. Sorry I have not been around. Ended up in A & E followed by admission for a week of IV anti biotics for an infected Hickman Line. Please to say all is okay and I am now back on the taxol, just had no.4. Missed one due to the infection and being in hospital.
Taxol effects on me is mainly feeling sick. Chemo Nurses have changed my metoclopramide to cyclizine, which I am to take before I actually feel sick as prevention. I have bouts of tiredness and various aches and pains, when one is not sure if it is the chemo, the disease or even age related.
Delighted to say we caught up on Xmas and my Husband who has been fantastic took some well deserved time off with me. So we are ready to celebrate xmas. Xmas day will be the two of us, my beloved only has 2 days off. Boxing day is for family, which includes my new Grandson Lucas.
Pam170 - I assume you have started the xeloda, how is it going? They tried me on this before pixie dust. I am afraid it did not work for me.
Good day today despite chemo yesterday. went for a walk with Freyja and the beloved and lunch at the "Little Mill Inn". I am NOT ashamed to tell you I had chocolate fudge cake with icecream.........no sickness in site.
Hope you are all well and I hope you have an amazing, family xmas, love and peace to you all. xx

Pam170
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Hi there Pixies, how are you all doing!
I know most of you are not on Pixie Dust now, but its good to find out what you are doing and what treatment you are on
I have been unwell for a few weeks so had my Onc appointment brought forward to today. I should have had a scan before seeing him but `it got lost in the system` so now they are trying to get an urgent scan done before I see him again on the 28th.
After being on Tamoxifen since I finished Pixie Dust at the end of Sept the Onc has decided It has done nothing and I have progression. I am hopefully starting Xeloda next week.
Any of you Pixies going down this route and doing well, I would love to hear from you. What are your SE`s etc.
Well hope you are all doing OK.
Hugs,
Pam.xx

Angelfalls
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Christine - How disappointing that the Ketamine didn't work for you (even if the "break" sounds great... Apart from the tx, of course!). Hope your Pain Man had an effective plan for you today and that you'll soon be feeling the benefits.

Pam - Good luck for Friday. I hope the news will be better than you're expecting and that they can get your pain sorted, too. Great news about your mum - I'm so pleased it's all going so well and that it'll make your life a bit easier.

Elaine - Hope you're starting to feel more like yourself after no. 2. I wish I could lose all the weight I've put on since starting tx in January, but I just don't seem to have the motivation at the moment and with Christmas on the horizon, I don't fancy my chances now!!! Maybe I should get a dog - my cat is even lazier than me!

Take care, Pixies! xx

diddy1953
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Hi ChristineW sorry the ketamine did not work, what a disappointment. Hope the pain man can sort it.
Had my 2nd taxol today. Had a fuzzy type headache and have felt a bit icky and off me food, but apart from that,
not to bad. Managed to lose 4 kgs since July. This is a good thing as I did need to lose some. I put it down to more energy output than input. Less food and walking 2 hrs a day with my new doggy "Freyja".
Hope every one is okay. Till next time pixie chicks, Goodbyex

Pam170
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Christine, thanks for the update on your little trip away. So sorry the treatment hasn`t worked, fingers crossed there is something out there to help you.
I see the Onc on Friday and must admit I am dreading it, I know my tumour markers have gone up dramatically and my breathing is not too good. Even though I am on high dosage patches the pain at my wound side (also the shingles side) is driving me mad.
My Mum seems to have settled in the Care Home which is a big weight off my mind, its a lovely home with a good reputation. Mum is full of praise for the staff, food etc. We know know that we have done the right thing even though we had some reservations at first, its only 5 mins drive from from our house so we can go and see her every day even if its only for 15 mins sometimes, we had a 45 minute drive to see her when she was at home so we only went every 3 or 4 days. Now its down to sorting her bungalow out.
Hugs to you all,
Pam. xx

ChristineW
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Hi all, thought I'd fill you in on my "short break" in hospital last week.
The room was very good, with excellent views across farm land, food was excellent and as good as any top restaurant and the staff were wonderful and caring.
As to the Ketamine Burst to help my nerve pain I was sadly dissapointed, I must have has enough Ketamine to floor a couple of Shire Horses but it did nothing for me!!! As to where the hallucinations, lurid dreams, highs and of course pain relief were I don't know, I feel swizzled!!!!! Seriously though all I have to show for the treatment are 5 sets of sore lumps and bruises from the 5 sub-cutinous injection sites, caused by a reaction to the Ketamine. Pain no different. Going to see the Pain Man, as I like to refer to him, again on Wednesday, so I live in hope that he has another trick up his sleeve to get rid of the pain.
Hope you are all ok and had a good weekend.
love & hugs Christine xxxxx

diddy1953
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Thanks Angelfalls. As the last three tx have failed, it would be nice to have something positive this time.
elainexx

Angelfalls
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Elaine, Sorry to hear you're last tx failed. I hope Taxol will work wonders for you, with minimal SEs and for a loooooooong time.

diddy1953
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Good morning ladies, it is 3 months since I came on this site to find out how you were all doing on Taxol. I knew I would be starting this drug if my last treatment failed, which it did.
Last week had a central line fitted as my veins are shot to pieces. Best decision I could of made. I had my first dose of Taxol on Monday. side effects mild, headache and I looked like Aunt Sally as my cheeks were rosy red. No need for blusher!
Anyone else starting out on the taxol journey? I will have 12 doses and then be re-scanned to see if it is having any effect. I have mets in the lung, liver, abdomen, bones and central chest. Previous breast ca 15 years ago.
Looking forward to hearing from any pixie chicks on this thread
Hugs to all Elainexx

Angelfalls
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Thanks, Lolly - I just hope the new tx is working! Especially as I didn't get much out of the 6 months of Taxol or the 2 months of Capecitabine... But I'm glad you're doing so well. I'm HER2- so not on Herceptin or Tykerb and I don't know much about them, but hope you can continue with the drugs while still looking after your heart. Good luck with your next scan - I'll have everything crossed for great results for you. Let us know how you get on. xx

lollypop59
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hi angelfalls, please to hear that your new treatment have been kind to you, i was taxol for six months, had two scans that were clear so far, but now on capecitsbine along with tykerb, only herceptin affecting my heart but hoping to go back on herceptin soon i have a scan due in two weeks and hoping it still clear, all the best to all of you.
lollypop59 x

Angelfalls
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Oh, Christine! That is brilliant news! You must be so chuffed. I hope that the Afinitor works wonders for you, too, and that the Ketamine will resolve your pain issues. Good luck!

I'm still waiting to find out if I'll be awarded DLA, though I haven't applied for the mobility component as I'm fortunate enough not to have any issues so far. I have been awarded a higher rate ESA, though, which will help the finances a bit, especially the £10 Christmas bonus!?!!!!! Lol!!!!

Pam, I'm glad you're feeling a bit better now. We all have our rough patches and down days and I think we're entitled to them from time to time, just as long as we can lift ourselves back out of them. The photo albums are such a lovely idea and it must be quite therapeutic to go through all the old photos, as well as enjoyable. I'm sure your mum will love them.

Hugs to everyone still following this thread. xx

Pam170
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Christine, so happy for you and glad you have got funding for the new treatment.
Sorry about the pain, I just hope the Ketamine works for you. You have got a great attitude about going in for the treatment, make the most of your stay.
I also was awarded DLA at the highest rate and mobility etc, its a great help and after all we have worked and paid in for it.
I have had a good day today after a few down days. OH and myself went over to Mum`s bungalow today to sort some things out as it looks like she will be in Residential Care permanently. Just got all her old photo`s together and bought some albums so I have spent a couple of hours going through them and putting them in order in the albums, mind you it will take weeks and a lot more albums. Still it will be nice for her to look through instead of looking in an old shoe box!
Once again Christine sooooooo happy for you, let us know how the pain treatment goes.
Hugs to you all.
Pam. xx

ChristineW
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Hi ladies, had the results of my scan this week and I'm very happy to report that the Abraxane has done it's job, all tumours have shrunk! So I'm a happy pixie at the moment. I know that this is only a temporary reprieve but hopefully the next treatment will also prove as effective. I'm due to start taking Everolimus/Afinitor from Monday, it's a new chemo drug that targets cancer cells and leaves normal ones alone. It was only licensed in Sept and fortunately BUPA have agreed to fund it as its not yet available on the NHS.
My nerve pain has got really bad, to the point it has taken over my life, so my Palliative doc has decided that as the Pregabalin has no effect other than side effects when I was on maximum dose, drastic measures are needed. So I'm going into hospital on Monday to have a Ketamine Burst. This is an intensive treatment of increasing doses of Ketamine to hopefully kill the pain. I've been warned that it causes hallucinations and lurid dreams!!!!!! So I'm treating it as a mini break from caring for my mum, where I'll be in a nice room, waited on hand and foot, and high as a kite!!!!!!!
Also I'm pleased to tell you that I've be awarded DLA, highest rate for care and higher rate for mobility!!! You could have knocked me down with a feather when I read the award notice. It entitles me to a blue badge and free road tax so it is a big boost to my finances.
Sorry to have gone on but I wanted to share my news with you, and as we all know good news is few and far between.
Have a good weekend everyone. Love & hugs Christine xxxxxxxxx

Angelfalls
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Hello Pam,

Glad to hear the patches are helping with the pain from the shingles. That's bound to be wearing you out in itself, quite apart from recovering from the chemo. I suppose we just have to be a bit more patient with ourselves, but I did think I'd be feeling some improvement by now...

I hope your mum has recovered from her fall and is settling in well to her new home. That must have been a worry for you, but I'm sure you've done the right thing for all of you.

Hope you have a better day tomorrow and a good weekend. Take care xx

Pam170
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Hi Angelfalls, glad the new treatment is being kind to you.
I had my last Pixie-Dust on 24th September and have been exhausted ever since, takes me all my time to get up in the morning and I always have a sleep in the afternoon. Like you I would appreciate andy tips.
Having shingles hasn`t done me any good either but the pain seems a lot easier with the patches.
Plus we have had to put my 96 year old Mum in a nursing home, she had a fall in her bungalow 2 weeks ago and we had to get the police to break in, we had keys but she had chains and bolts on. She ended up in hospital for a week before moving her to the nursing home. We have all now realized she needs 24/7 care and being an only child a lot of her caring was up to me. She seems to have settled so we are keeping our fingers crossed.
Just wish I hadn`t got this b****y disease and could do more. I have had a couple of really good days feeling `normal` but today I am not at my best. Still there`s always tomorrow.
Hugs to you all,
Pam. xx

Angelfalls
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Hello Pixies!

Just wondering how everyone's doing? Hope you're all ok and your current / new tx is doing the business...! I've done 3 weeks of my new tx and no major SEs so far, but I just can't shake the fatigue from the Pixie Dust, even though my last dose was 12 weeks ago now. Can anyone relate to that? Anyone got any top tips for getting those energy levels back?

Look after yourselves. xx

Angelfalls
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Glad you're feeling better, Sharon.

Hope everyone can have a good weekend. xx

sharon2
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Hi thanks for your comments. Have slept on it and feel calmer and more positive. There are positives to think about and until i see consultant next week (which unfortunately is a locum) i am gonna try and forget it. Have not told son, he just thinks i had chemo and they were done quick!!!! Hope you feel better soon Pam Take care everyonre xxxxxxxxxxxxxxxxxxxx

Angelfalls
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Oh, Pam! Sorry to hear you're still suffering. I really hope you get relief SOON!!! xx

Pam170
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Sharon, keep your chin up. We all get these setbacks but I`m sure there will be another treatment out there to help.
It is good news about the lung so hang on to the positives.
I am still suffering with shingles I never knew it would be this painful, I am now on buprenorphine 35 patches as well as co-codamol. I am keeping my fingers crossed that it is on the turn as the pain is not as intense today.
Hugs to you all,
Pam

Angelfalls
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Sharon, I'm so sorry to hear you've had progression while on chemo. The same thing happened to me, so I understand how disheartened you feel. Hopefully you'll start to feel better once you find out what your new tx plan is and it gets started. Until Wednesday, try and be kind to yourself and give yourself a treat if you can. There is some good news about your lung, though. Let's hope your next tx will get your bones and lung to play ball! Why you? We all ask ourselves that at one time or another, don't we. It's all just so crap and unfair. Sending ((((((hugs)))))) xxx

sharon2
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hi everyone, have not been on here for a while and hope all are well. went for chemo this afternoon and was told could not have it as although bloods were fine my recent ct scan showed some bone mets, lung is clearing. feel like crap. see consultant next wed to discuss new plan of treatment. why me

pinkylou
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HI lollypop, with regards to alcohol , I must admit I don't drink during the week but every weekend I do have a couple of beers or z bottle of wine, the cap doesn't make me feel sick maybe you have a bug. I had a flu jab last week as well. I am also having the zoladex injection in my stomach every 3 weeks. I am going to Australia on weds , I have an account that I automatically get travel insurance with but obviously I am doing treatment do I just haven't gone into that detail with tHem. I heard travel ins would be about 1500 and I can't afford that. Congratulations on your clear scan , that's brilliant. I understand that you had lung mets at what stage were they when you started cap ? Is this your first chemo ? X
pinky Lou x

lollypop59
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i anglefalls i see you have been having a tough time latley ,but glad you are feeling better soon. xx

lollypop59
Member

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pinkylou forgot to mention my last scan was clear.

lollypop59
Member

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pinkylou, i see you are on cap i am on my third cycle after week off, i see you you are going to australia which where i am going next june to see my son did you get insurance to cover you bc secondrey i have lung mets too.

lollypop59
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hello ladies, not been on here for a while, i am on cap at the monent, but last night i went out with my daughter for afew glasses of wine, but after about couple of hours i was sick about eight times had diarreoa aswell, not sure whether its the chemo or just a bug. has anybody else had this i did phone the chemo nurse last night and she said if it continues after you have taken the sickness tabs then call us back x

Angelfalls
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Thanks, Louise! Glad to hear you're getting good results from the Cap. Hope that continues for a loooooong time. Good luck with your next scan - let us know how you get on. And have a fabulous time in Australia, you lucky girl! Perfect time to head to the sun!

Christine, I hope the new pain meds will work well for you and get your pain under control. Good luck with your claim for DLA. I've just had to claim for ESA as my SSP has run out now and I've already had a huge form to fill in from Atos. *sigh* Wish I could just win the lottery!!!

Juls, I can't help, sorry. If you're still in pain and struggling with the Big D today, maybe you should contact your chemo unit to see what they suggest or even your local pharmacy. I hope it's passed by now, though, and you're feeling much better.

Take care, Pixies! xxx

juls1974
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Hi there,

Need some advice please from any of you lovely ladies.
Had my 2nd round of Taxol on Wednesday and had bone strengthener too. This morning I had a bad bowt of constipation so took a sachet of movicol and went but painful and agonising. Tonight I have been the opposite! Had excruciating abdomen pain for about 20 mins followed by bad diarrhoea. The pain has eased but still grumbling away. What should I do for the best? Anything I can take to help?

Thanks! Xxxx

ChristineW
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Hi Pam hope the patches work for you and that you are soon free from pain and enjoy life as it comes.
I saw the palliative doc today before I had the chemo and he is increasing the pergabalin to 300 mg in the morning and 300 mg at night plus he giving me mophine in liquid form to take when the pain excelarates to unbearable again. It was abit of a shock to me as I wasn't expecting to go down the morphine route quite yet, but if it kills the pain and the pins and needles I 'll be grateful.
I also managed to get my GP to give me a DS1500 so that I can claim DLA and I sent it today, fingers crossed that its accepted and I get awarded it. It will enable me to get help, especially with the garden.
I used to work for DWP until I took early retirement, so I know how to complete forms, well I hope I do! Time will tell whether this proved right.
Pam, keep cheerful and I hope all goes well with the 4 weekly Zometa infusions, most of all cherish your other half , I wish mine was still here in body instead of spirit , though I think he is giving more strength to get through this.
As you say cold weather on the way, so wrap up, you don't want to catch a cold on top of the shingles, I 'm glad I bought a couple of pairs of boots last week, my feet are warm as toast now,bring on the cold weather I'm prepared now!!!!
Have a good weekend xx