Hi there one and all
I havent written for a while but have aften sent replys to others and have always been possitive but am now going through a bad time . So if anyone has ideas I’d be grateful
I have had BC + liver mets sicnce june 2002 and then last year in Jan 2007 I got bones mets ( which arent really too much trouble ) and then in Aug 2007 was told that I had mets in the lungs.
So far not much trouble except with the treatment - its getting harder and harder to take
I have had Arimidex for 4 yrs then it stopped working
Tamoxifen for 3 months then it stopped working
Veneralbine for 3 months then it stopped working
Taxotere 3 lots but didnt work
Now I am on Xeloda but have had real problems since Xmas but didint realise that it was the treatment
I had headaches but then who doesnt with cancer
I felt strange but who doesnt with cancer
then I sarted to miss fall over my feet - so it was the shoes or rough ground
then I fell over and gave myself a black eye and thought that Perhaps I should mention all this to the sepecialist
She has done all the tests scan, RMI and Lumber punc and all seems ok so she says that it must be the Xeloda as in rare cases it can cause problems to the nervous system
So she is going to take me off of Xeloda
My real question is that I dont want chemio that makes me loose my hair - I have just got it back for the second time - and as the Taxotere didnt work I wonder if its worth taking the chance that I loose my hair again
I know it sounds vain but I have come to the stage that I want quality and not
quantity.
So who can help me out with other chemeo names that dont make you loose your hair so that I can see the specialist with some ideas in hand
Thanks for listening - I am still positive but just fed up with it all at the moment
Keep the old chins up and luv to you all
Bye jANE
Hi Jane
Not sure I can be of any use to you in terms of information but just wanted to say I was sorry to hear you were going through such a bad time. Think different chemos work in very different ways though, so just because taxotere didn’t work doesn’t mean another wouldn’t work either. However I do know what you mean about quality vs quantity and these treatments certainly affect quality greatly.
Sending you lots of cyber hugs - and hope someone with a bit more knowledge than me posts soon!
K x
hey im sorry your feeling down at the moment, i am too but i think im at a point were a i need professional help. anyway… i am triple negative so cant really help on the hormone drugs, but i was diagnosed with liver and lungs mets in jan and have been given Gemcitibine and Carboplatin alongside Avastin, avastin was supposed to be taken with taxotere but i was given that the first time round and it didnt work so they are trying a couple of other chemo drugs.
i just got a good head of hair on me when i was dx again, but these chemo drugs although has made my hair thin and some have fallen out i can still walk around without a scarf or a wig. but my nurse did say to me that as my treatments were so close to each other that my hair foliculs would be weak so my hair would fall out.
But the chemo drugs i was told shouldnt make your hair fall out so maybe research Gem and Carbo?
Good luck and hope you feel better soon.
H
Hi jANE
So sorry to see that you’re having a lot of trouble with these rare Xeloda side effects, and that your onc is taking you off of it. I wonder if she might consider trying you on a lower dose, to see if that reduces/cancels the side effects? Our oncs usually start us on mega-doses of this drug – I was on 2000 mg x twice a day, then the hand/foot and digestive side effects kicked in and I had many chemo-breaks and two dose reductions. I’ve been on 1000 mg x twice a day for about three years now, and it seems to still be working on my bone & liver mets. My onc reckons that a consistent amount at a lower dose is better than a higher dose that is regularly disrupted by chemo-breaks to deal with side effects.
Also wonder if you’ve had Aromasin (exemestane) if your BC is ER+? I had five years of Tamoxifen after my primary treatment (1998 - 2003), two years on Arimidex after mets were dx in October 2003, then had some liver met progression in Nov 2005, so my onc changed my aromatase inhibitor to Aromasin, which – 2½ years later – is helping to keep me stable.
Finally, I’ve been on Bondronat (tablet bisphosphonate for my bone mets) for over four years – are you having a tablet or IV one for your bone mets? Most of us have found these drugs help to strengthen our bones and even heal some of our mets.
So . . . . a few options to ask your onc about that might help without hair-loss. I also wonder if you might find it useful to talk to someone in your onc team, or a Mac nurse, about your situation and your worries – they might be able to find some other options for you.
Much good luck to you, and hope the scary symptoms/side effects are disappearing now.
Marilyn xx
Hi jANE
As hemley31 says carboplatin and gemcitibine (gemzar) are two chemos where it is supposed to be ‘rare’ to lose your hair. BUT beware…I have been on this combo since early January…my hair started to thin at end of January and I am now nearly bald and back wearing a wig…in some ways this gradual hair loss when its not supposed to be happening is worse than first time round on AC and tax when I expected it. Have also found gemocarbo very exhausting.
Not surprised you are fed up.
best wishes
Jane
Hi jANE,
I’m going through the same at the moment, I was started on Xeloda last week had nausea, vomiting, then have been really uncoordinated, blurred vision, funny speech. Saw onc yesterday stopped Xeloda wants me to have brain scan rule out its not either bleed or mets. Now on steroids which have helped a bit so far.
Don’t want to do Tax as thats my other option at the mo
Go see onc again next week she said she might try me on Xeloda again but ?lower dose.
I was really hoping I was going to tolerate Xeloda better.
Good luck,
Allie
Hi there Jane,
sorry to hear your having a rough time at the moment, have you ever tried scalp cooling??? I kept most of my hair with each chemo Ive had, epi, taxotere and others whose name escapes me at this minute!! It makes your visit hours longer and its uncomfortable but when you walk away you can carry on life as normal as possible without the worry that everyone can tell youve lost your hair which believe me was a major part of my positive attitude through all this.
I too have had numerous treatments hormone and chemo since my original dx in 2002, recurrance in 2004 and liver secondaries in 2005, Im now on xeloda and luckily having non of the nasties that youve experienced with it, my last chemo was venoralbine (I also used scalp cooling just in case!) which doesnt always cause hair loss but it was a risk I wasnt willing to take!
Hope you find what your looking for
Take care
Sue xx
hi sue , how are you doing on xeloda? i have had 3 lots now and anxious if its working xx
marilyn are you on aromasin and xeloda?
Hi Tracy – yes, I’ve been on Aromasin (after Arimidex stopped working) & Xeloda (low-ish dose) for several years. Those drugs plus Bondronat (for bone mets) have kept me relatively stable for over 4½ years since bone & liver mets diagnosed. Hope Xeloda works for you!
Marilyn x
wow marilyn ,i asked today about doing both but he didnt seem keen wants to just do xeloda for now to see how we do . anyway have decides on markers every 6 weks to stop the stress and tell if i feel anything odd . ie pains etc .