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.
pinkylou forgot to mention my last scan was clear.
i anglefalls i see you have been having a tough time latley ,but glad you are feeling better soon. xx
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
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
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
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
Oh, Pam! Sorry to hear you’re still suffering. I really hope you get relief SOON!!! xx
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
Glad you’re feeling better, Sharon.
Hope everyone can have a good weekend. xx
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
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 hasnt 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 hadnt 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
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
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
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 Mums bungalow today to sort some things out as it looks like she will be in Residential Care permanently. Just got all her old photos 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
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
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
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
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
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.