Hi everyone maldives here. I’m still alive and kicking been busy trying to stay alive with all different treatments. I’m on a new chemo for me anyway called paci
Ops didn’t finish that.my new chemo is pacl itaxel (taxol)
It’s knocked me off My feet. I’m so tired even getting out of bed is exhausting
I’m finding it difficult to everything.
Have any of you ladies had this drug? What was your experience with it?
I’m also having problems with my jaw. I don’t know if you remember me saying earlier in the year Carolyn but it now turns out I have mets in the jaw blnd which is being operated on in Southampton on Saturday. It’s a balloon procedure to block the nerve to stop neuropathy pain in the face.
I. Really scared about it as it involves Neuro surgeons going across my main arteries with a needle. It will leave me with a numb face but hopefully pain free. If any of you ladies have experienced either of these things I could reply do with some support. Thanks maldives CD
Maldives
It’s been ages since we heard from you and it’s good to hear from you …I think last time u had just started cape and you were feeling very energetic walking your dog!!
Wow …that’s pioneering surgery isn’t it but if it takes the pain away …you will feel so much better.
I personally haven’t any experience of taxol as a chemo but others here will have .
How are the femur pins ? Are you mobile still when you are awake ?
Take care …and don’t stay away too long this time.
Hugs xxx
Jellytot Hope tomorrow goes well and you feel good being back amongst you colleagues
Hi. I’m feeling really rubbish at the moment. I have been lucky with side effects and I’m ashamed to say quite blase about the cancer. Some say it’s my way of coping but I just think I’ve been lucky not to have had bad side effects. My cancer is very widespread throughout my body in the bones. Now in my liver too. My worry is the metz in the mandible and dental nerve.
Reading up on it I didn’t realise it’s got a low survival rate. I just thought it was a nerve thing they were blocking. I’m going to speak to my oncologist nurse tomorrow to find out what’s going on as there has been no mention of this till I got a copy of my referal letter this weekend. I hope I’ve misunderstood the letter. Oh well what will be will be. Femur nails are ok but legs are not working side effect of the chemo.
Sorry to blather on but I can’t talk to my family about this one yet. Xx
Maldives…try and ignore the ‘survival rate’ stuff…we dont know how valid the research was and anyway…it wont help to think about that!
hope tomorrow goes well…poor thing you have had a lot of things coming up!
yes I was on Taxol, made me tired…give yourself some slack and rest upxxx
drink loads of water thoxx
Mx
Hi Maldives, please try not to look into “survival rates” too much, this cancer lark is VERY individual and not one is the same!
Good luck today, I hope things go ok and they can explain things to you so it makes more sense.
Hugs Janette xxx
Hiya Maldives
Everybody has a unique pattern for cancer and yours is very unusual …the procedure planned must be a good one as they wouldn’t be risking it if they thought it was a waste of time.
You don’t say whether it’s going to be done under general or local anaesthetic. …general sounds best
As u go sleep and wake up …all done !!
Special hugs xxx
Hi everyone,
i have not not been on this site for years. I just thought I would check in and say hello again.
I was diagnosed with secondary BC in 2008. I have 2 mets in my spine and one in my hip. It’s HER2 and E/R receptive. The disease has remained stable. I worked full time up until last year, I retired in November 2016. It’s sad to see that some of the old timers are no longer with us however I am pleased to see that there are some familiar names as well.
Hello Alex
How could you stay away so.long from us !! Glad you have checked in again and welcome back.
Wow …you are doing well …assume you have the benefit of herceptin as your treatment plan?
Hugs xx
Feeling very cross and annoyed with myself …thought I would do all my ironing. .last item …a brand new shirt I wore once …yes u guessed a great big iron hole in the front !! Can’t remember the last time I did that …can’t even put a patch over it saying idiot or numpty !! So in the bin it’s gone.
???
Hiya Renee
Thought you were on holibobs …hence your absence. …sunning yourself on a beach with a pina colada and having sun tan lotion rubbed on you by a very fit adonis !!! Ha ha …
Phew …that was a hectic week for you but hopefully it’s all good …
Hugs xxxx
Hi ladies. Thanks for your support. I know I’m stupid to Google things I should know better. I came across it by mistake then one thing lead to another giving me a terrible weekend of worry. I spoke to my onc nurse today and the metz they are talking about is in my jaw which I know about and has been there from the beginning although not so much. The treatment is for neuralgia pain in the face caused by pressure on the nerve.
From what I can make out I’m put to sleep then they wake me to see if the pain is still there then they put me to sleep again. Clever stuff. It only takes 5 - 15 minutes to do the procedure and there is no cutting involved. I think with that and the new chemo I was just overwhelmed. My hubbie is away too which doesn’t help as he’s my rock. I was planning on going to America on 20th September but there’s no way I can go on this new chemo. It’s knocked me off My feet. The fact I look like a sumo wrestler due to steroids is not helping with my legs. Size12 to 18 in two months. Hey fatty bum bum. Lol.
Anyway enough rambling. Thanks once again you lovely ladies. Xx
Hiya Alex
Yes guessed it was herceptin …it’s a magical treatment for lots of ladies that are her positive but sadly a lot of us are negative for it so have to rely on hormones /chemo.
I’m sure your posting will cheer up lots of ladies reading this though.
Xxxx
Hello Maldives. .fatty fatty bum bum
I shouldn’t worry too much with the weight at the moment if they are keeping you going …I expect they will start reducing them soon …
My hubs takes them for chest infections and he seems to balloon very quickly and eats non stop like a little gremlin.
I’m glad u have had the op explained to you …sounds like it will b quick and u will be asleep mostly …nerve pain is agony so if this helps …then you will be a lot more comfy
If the chemo is knocking you for six …maybe they would reduce the dose a little ? But I’m not an expert on these things …
Hugs xxxx
Hello …Maldives
Just popped into wish you all the best for tomorrow and hopefully it will help and be a quick procedure .
Hope everyone is enjoying the beautiful sunshine here today …Im off for lunch with Barton and Bon and yes cake will be involved .
Hugs xxx
Hello nanofthree
Oh dearie me …thought I would just say a Hello but I don’t have any answers ( as usual) …both funny face and still here have experience of this regime so hopefully they might be able to help.
Maybe you need to chat to bcn ( if u have one …I don’t! ) or oncologist. …
It’s always hard having to face the big guns chemo after taking the gentler treatments .
Sorry not much help but I will send a hug xxxx
Nanofthree I didn’t have too bad a time on paclitaxel, but I had the weeklies which are known to have very few side effects, esp not much bone marrow suppression. It’s not like FEC or that type of chemo at all & my hair grew back whilst on it. I did do the cold cap though. The clue to the downside of weeklies is obviously in the name … you are at the hospital every week. I used to have bloods on Fri & Pac on Mondays, to save hanging around, but it’s wonderful to just keep living life as normal rather than being in that chemo bubble. I gather 3 weeklies are more like proper chemo. Good luck xx
Hello nicky and nanofthree
You both are such an inspiration to us here …it’s good to hear …it’s nearly two years ago now I sat in oncologists room to be told mine had returned after 11 years and I remember coming home and getting “my paperwork” in order so to speak. I’m still at letrozole stage but good to hear there are successful treatments to follow…although not so easy to tolerate ones !!
Anyway where is everyone ? It seems to be radio silence here from our regulars …so stop reading and drop in and say hello …
Hiya nicky
How exciting for you …a little bundle of joy to cuddle and love …do u know if u need to buy football boots or ballet shoes yet for it?
It will pull at your heart …and your purse strings! !
Xx