Hi Moijan,
Thank you. Haha, I am a terrible patient but this last episode has taught me a massive lesson. Body’s controlling me right now but I intend to get a good amount of control back. I worked too hard over the last two years to get it.
Ann , I didn’t get double vision but had blurry vision once I was back on chemo. However, a few days after my first craniotomy, I lost complete use of my right arm - left brain met, right arm. I also had approximately 15 seizures in one day. Grim times. The worry was I’d never get the use of it back. Months of physio & realising there was hope & quality of life, albeit I am dependent on mum & my sister & her family & of course life is fatigue ridden, my arm has improved. I‘m a jazz fanatic, listen to live jazz often & sing so it’s hard to hold a mic & balance but I try. Modern technology helps me with songwriting. I don’t have to type too much. Taken up photography - a very kind, excellent photographer has become a friend & helps me when he can. My arm will never be the same but I believe in hope. I see this latest brain tumour as a sidestep. Things can certainly improve.
Keep hope that the double vision will subside & the pain will ease in time. Thinking of you.
Hope all you lovely ladies are ok.
??? xxxxx
Hi Moijan,
I also didn’t realise you were on taxol. Guess I wasn’t paying attention. Shame you have to cope with a change & the side effects but seems you’re finding a way to cope. Rooting for you.
Thinking of you. ???
??? xxx
Hi Maria,
Glad wbr over for you & that you coped ok. Rest & stay well as you can. Thinking of you.
Much love & hope everyone.
??? xxxx
Morning ladies, well we plod on don’t wexx
hope everyone is going to have a super day, or at least an improvementxx
i sleep a bit longer last night, having calmed myself down with reiki, I was earlier in a bit of a state…you know that place where everything seems scary and uncertain? That’s the taxol, plus blasted Cipro antibiotic am currently on. Had been ignoring my own advice…and mentally suffering. I think I was over tired and I’m going to meditate more and take much more time for myself.
anyway, a new day today and lots of mushrooms I think as I love them XX only as part of a mixed diet as not sure if they’d affect my drugs.
Coo EE? Anyone about sweeties?
m
Hi Moijan.
Apologies, i’m having difficulty with my recovery. Low energy is still main issue. Plus the other meds I are taking are taking their toll. Finish my antibiotics tomorrow - wow, 30 days of hardcore. Can’t wait! Has RM appointment last week. My brain still fine but consultant wants wait another 5 weeks before treatment. Doesn’t want to do me more harm than good. That treatment adds to fatigue.
How are you, Moijan? How’re coping?
Thinking of you.
Hope all you ladies are ok.
Much love & hope…
???xxx
Hi Lissa,
myself feeling a little less well
have just nearly finished my week off (10 days since last dose)??after 1st cycle of taxol and my fingers are still Very sore and numb at the tips, I’m already on a reduced dose, I don’t recall this 17 years ago on Docetaxel I know about udderly smooth, but has any new drug or cream come out that helps.
Also feel vaguely nauseous all the time. Maybe I’m far too long in the tooth to be doing this.
which day are you at rm?xxxx
love to all of you
Moijan?
Hi Moijan,
Sorry to hear of your struggles. Taxal is something I’ll have to refuse. Docetaxel sent me crazy when I first had it 4 years ago. Surprised my mother didn’t chuck me out of the house. I’m thinking of you. I really am.
I haven’t been able to check on you because i’m back in hospital AGAIN with another infection!!! Can’t believe it. Fed up.
Sending you & everyone love & good vibes of strength & HOPE.
??? xxx
Lissa, what bad, bad luck…am trying out swear words to find the most suitable word to sum up your situation,
**bleep** That one rhymed with duck, but not with feather.
No bleep with that one deleted it as not a quality word.
**bleep** that ones ok…rhymed with Brit
I do hope you get home soon lissax
Am really thinking of youxx.
moijan
Hello everyone!
Sorry for the lack of response on my part! The time is flying by & ive been having scans, radiotherapy & about to start chemo. I went up to the Royal Marsden for 3 rounds of stereotactic radiotherapy to treat the tumour bed of the one I had removed in jan. they also found another tumour on the CT scan they did up there so they zapped that one too. I’ve had a CT & MRI of my torso which showed progression in lymph nodes near my heart, my lungs & possibly liver. They want to do another scan of just my liver & see what’s there as it could possibly be a cyst. I’m seeing my onc on weds to hopefully discuss chemo which they’ve said will be carboplatin but they’re also looking into trials.
How are you doing Moijan? Lissa sorry to hear you aren’t doing well! I hope you had good mother’s days? We went to my sisters, I have 4 sisters & we have 11 children between us so with partners & my parents all under one roof it was hactic but lovely. Anyway, take care girls. Sending you all big gentle hugs xxx
Hello!! I’m not too bad thank you, vision in one eye gone, very unsteady on my feet need supervision all the time as have had a few falls & need help dressing etc. I’m currently on Capecitibine chemo & have tried Carboplatin. My brain nets have spread to the lining of my brain so I’ve been told there’s not much they can do as it didn’t respond to the srs ? sorry it’s been so long to update. I hope everyone else is doing well xxx
Hello Ann
I just opened my special hugs cupboard to send mega hugs to you and hope you can get through this …we are all holding your hand lovely lady .
???
Hello Karen
If you go to bone mets thread and post this I will answer some of your queries.
It’s a mine field on the forum til you get used to it.
Hi all,
Well the good news is I don’t have it in my bones but the little buggers have got into my brain, waiting to start radiotherapy,so let the fight begin…
love karen x
Hello Karen
It’s so nice to hear from you but so sorry to hear that the little blighters have set up home in the brain. .its going to be a tough few weeks but please let us support you here …
We are all real and understand fear and everything that goes with it …
Sending special hugs xxxx???
Hi All,
I was originally diagnosed June 2015 with invasive ductal carcinoma. Triple negative. I had Fec-t x6 chemo followed by left mastectomy in Dec 2015 then rads, can’t remember off hand how many rads but think it was 15 feb 2016(3weeks mon-fri) I then had ovaries & Fallopian tubes removed in May 2016 as I’m also BRCA1+ In June 2017 I had double diep flap reconstruction. Then Dec 2017 diagnosed with brain mets, I had a craniotomy followed by srs for another small brain lesion. Scans showed liver & lung mets & further progression to lining of brain & radiotherapy hadn’t worked. I had 3 rounds of carboplatin to which some tumours shrank but some grew. I’m currently on my second round of capecitibine, feeling very dizzy, no energy & completely bloated from the steroids! Hoping this is side effects & I start feeling a bit stronger soon. We’ve just booked a week away in this country only an hours drive in case I need to cine home. Sorry fir not replying sooner, I do read the messages it’s just finding time & energy to reply xxx
No worries, I too book in this country for the same reason.
wondered how the carbo was, as am destined to visit that soon. What side effects?/ did you get nutrapenic and need to visit a+e ?
love and hugs…M???
Hey M!
I found the carbo very easy to deal with, no side effects at all really. Bloods were fine, no neuropathy, hands & feet all good. Although I did suffer with mouth ulcers which prevented/delayed one of my chemos. They gave me some mouthy wash to use & that helped a bit. I also git some paste off the internet but didn’t find that much good. I invested in an electric toothbrush too. Anything to help! Good luck but like I said minimal side effects xxx
Morning ladies x
Well after the shock I’m feeling strong and positive just waiting for an appointment for radiotherapy.
I was just wondering what you all thought of CBD & THC oil ?, I asked my oncologist and she said she is not against it but not able to advice, I’ve heard it’s the thc that can kill the cancer cells, but my primary was oestrogen breast cancer which I finished my treatment only in Apri and apparently thc is fuel to the fire for oestrogen receptor which I’m scared if I start using the oils it my come back.
Found out 2 weeks ago I have several nodules in my brain I’m feeling great in myself, just don’t know what to do about the oils if a oncologist is saying she is not against surely it’s helping ?
Xxx