Sending Wendy some extra support and hugs from another Wendy.
Really sad to hear how you’re struggling.
Do hope this drug helps in the long run but can so understand your frustration with trying another ‘new treatment’.
Tight hugs to you and all the other posters here on this thread.
Wx
Hi Wendy
Am sorry to hear scan not as you would hope.
Thus tnbc seems so aggressive. Glad you have a non iv alternative as think veins need a rest - mine do after 28 tments I know. My onc mentioned vir too as a future option so
Must work in some of us so hopefully you are one of them!
Did you do 6 carobs just spilt over 12 ?
Sending you lots of love
Jo x
Hi Wendy - Oh BOTHER (to put it mildly!!!). Glad your veins get a rest and hope SE are mininal on the new treatment - but most importantly - the chemo kicks some butttttt!!!
Hugs to all
Sadie Xx
Hi ladies
Thanks for all of your kind messages, your kind words really do help to lift my spirits.
Jo, I’ve had 8 treatments but I have a slightly lower dose and have them more frequently. Instead of the 3 weekly regime, I had both gem and carbo at the same time, once a fortnight. It was a slightly reduced dose to take account of that, but I’m not sure by
how much. I’m sure I could find out for you if you would like me to?
Tina, I was going to mention Eribulin, but I think I’m just relieved to be on a oral treatment for a while. From what you say, it does sound very promising though, so I’ll certainly keep it in mind for next time.
My Onc has suggested referring me for genetic testing. It’s complicated as I don’t have any family history, but my Dad’s family isn’t known to us, so there’s rather a large black hole there. She did mention drugs being developed specifically for those with genetic issues, has anyone any experience of this?
I’ve got tickets for the Strictly Come Dancing live show soon, can’t wait!
Love and hugs
Wendy
xxx
Hi ladies
Wendy so sorry to hear of yr scan results, it’s the Pitts. But glad your new chemo is oral and giving your veins a rest, hope SE arn’t too bad.
I’ve got hicman line , 5 months ago now, cos my veins were so bad after first lots of chemo. Been to see my onc today, avastin has been funded for another 3 months, so very pleased about that:)))
Chemo again tomo for me.
Hope your all doing ok
Love n hugs
Sandra. Xxx
Hi Wendy - I have the same family history as you - a big black hole as far as my fathers history is concerned. No history of bc that i know, but ???. So i did have the genetic testing. I had to push for it cos no bc history, but kept saying i dont really know!!! Anyway there is no inherited gene, but Im glad i was tested!!
Sandra, glad youve got the avastin funding!!
Just heard weve got a Bursary for the kids school so, with me not able to work, the kids can stay at the same school!! Im soooooo relieved as moving schools now would’ve been so much not what they need!! Stability with people they know. Phew!!!
Hugs
Sadie Xx Xx
Hi Wendy
Think parp inhibitors work best with those with BRCA mutations but I did not have when tested.
They are supposed to be with minimal se.
Love Jo
Hey ladies
wendy great to hear you sounding so upbeat! Enjoy strictly 
xx
sadie- fab news about the school funding. One less thing for you to stress about + it’s great ur kids won’t have to be unsettled 
xx
sandra- brill news about the avastin funding. What a relief for you. Here’s hoping it continues to work well + treat you kindly xx
jo- hope ur doing ok. I have just pm’ed you with the essiac tea website etc xx
Rachel- hope you are feeling ok always thinking of you xx
laura- hope things are going well so far on the xeloda xx
hi to anyone else Reading too xx
I’m feeling good today despite waking before 5 am! Been out with dan shopping etc but will have a rest tomorrow whilst he’s at nrsery. Forgot to mention yeserday that I got a call whilst at the hospital to let me know my credit card has been fraudulently used in the last few days. Almost £2k spent, thankfully the bank realised it was unusual activity + stopped the card + I shouldn’t be liable. I hadn’t used it since last summer when booking Dubai and I cleared the card balance in oct. Spooky to think someone is using my name and address details 
hope the little fookers get what is coming to them grrrr!
Rant over! Love to everyone xxx
Hi all Wendy sorry to hear y scan results hope the new chemo works well I’m on day 8 of xeloda and my se are v good hardly any bit of tummy pain and bit of red feet but nothing else so pleased as I’m not so bad on chemo not had a gd few days I’m on anti b as have got a terrible cold and bad chest I must live on them I sent my hubbie off to ae last night with terrible rib and chest pain but they think it’s down to all the coughing owing to a bad cough as well so on pain k he had a x ray 2 wks ago that as to be repeated in 3 wks as there was something on he’s lung I hope to god its a inf can’t handle more bad news soz for down post feeling down these last few days c is the pits tc all Laura
Laura sending hugs to you and hubby… Hope his xray is ok.
Wendy really sorry your scan wasn’t so good but glad your getting started on to tge vinirlibine… A few of my non TNBC friends have been on it and I worked a bit for them but maybe works better for TNBC.
As for the genetic thing I was only tested cos Id had bilateral BC at 37 and 40 and mum had BC at 57 and apparently great granny had it too but not on her death cert… Anyway I was tested through a researc trial in 2006 and no gene was found bu when I got the 2nd tumour in 2009 I was tested through the clinical labs and was pretty shocked that I had a gene mutation after being told I didn’t but the techniques had changed over the three years between tests… Just glad there was a backup as if I was tested in 2006 through both labs I may never have found out… Anyway the most surprising thing was mum tested negative… It came from my dads side of the famil and although we are quite close nobody had BC except me… It appears to have come through the males on my dads side with his uncle having pancreatic cancer and that uncles dousing having ovarian both dying in mid 40s… My daughter is 20 and is just planning on getting referred to genetics to discuss whether she wants to be tested but she recently said since iv had BC for the third time she is more keen to have the test done even though she’s scared about the results… My 17 yr old son is more keen to have testing and is pretty sure about it but it’s not available until he is 18… As for the treatments as hope said the drugs used for brca ladies is parp inhibitors, which has been having some positive results… Think there is quite a bit of info on the TNBC website… Even though it’s American they do have lots of good info which relates to us.
Sandra hope the avastin keeps on doing it’s stuff… I have a Hickman in too but I’m only on short term Chemo but it’s been fab although have had two infections in the wounds but thankfully not down the line… Thats been my main worry with it as apparently there’s a 40% risk of infection in Chemo patients!
sadie great news about the bursary… That’s excellent news… I know I got a bursary for my daughter one year but could only apply at the start of the school year so had struggle along for a few months before I got the help… But it made life a bit easier.
Tina sorry to hear you had your card hacked… Happened to my both my mum and dad just before Christmas… Two different cards with two different numbers but on the same account… Mum only noticed cos she doesn’t use the card very often… And then about two weeks later it was dads card by which time they were both monitoring their account closely.
Naughty daughter has apologised profusely and didn’t realise how much she was spending as could add up… I have confiscated her card and gonna go to the bank to see if I can be added to her account as a third party. Mos of the stuff is off eBay and amazon so can’t really send it back just because she doesn’t want it any more so think she will have to sell it on eBay herself… Se has been banned from buying anything else off eBay anyway! Tried to get the bank to waive the charges as they seem so excessive £50 for being overdrawn! But they said no way even if she does have a learning disability and her mum does have cancer… We weren’t sure if it was her reacting to my diagnosis and treatment as I think it is actually getting to her now and like I said above she is now worried and thinking about getting the gene test herself… Was actually about a day ot two after she requested the genetic referral she did the shopping spree and she said she did it cos it made her feel happier so I couldn’t really stay mad at her for too long but now just need to keep on at her about the value if things.
Anyway love and hugs am off to bed in preparation no 5 in the morning
Lulu xxx
HAPPY PAGE 100!!!
What wonderful support - Thank you to Tina for starting it all off nd giving us a nudge when the thread goes quiet!
Lulu - Im glad you have chatted to your daughter about the shopping nd listened to her reasoning! Even if it does not solve the problem - im sure you both feel better for the chat. Hope Number 5 going ok. Hug.
Laura - Oh goodness - lots of hugs coming yuor way. It really is all pilling up for you. I do hope you and OH are cough free very soon!
Tina - Hope you are having a good rest day. It must be so tiring with a little one!! Another Tina out there!! Using YOUR money - the cheek!! Rant away!!
Hugs and Smiles (and spoons to all those who following the spoon and benchland thread!!!)
Sadie Xx Xx
Hello lovely people
I know I know. It has been forever since I posted. I’ve been really manically busy and using any bit of energy I have for getting an album pressed, artwork done and launched. It all happened last weekend so now I can exhale loudly and say thank goodness that is done and dusted. In the process I discovered that Breakthrough Breast Cancer have been doing a ton of research into TNBC so I decided to do a charitable angle on the launch for them. I’ve emailed them a few times and they have promised to send me papers and so on from their work.
I’ve been reading everyone’s highs and lows with treatment and feeling a bit of a wimp as I am beginning to feel very anti conventional treatment. I am even resisting the idea of my next scan in mid February, thinking that if I am going to refuse chemo then what is the point? Am I alone in my resistant attitude? You all sound so tolerant of all the stuff that is recommended for us as treatment. I don’t know whether I am being like this because I want to keep control or because I am being fatalistic. I’m off to the Penny Brohn Centre in Bristol on 7th Feb. First time. Anyone else done their Living Well with Cancer course? I’ve heard good reports and at least it is a chance to recharge energy.
Still battling on with work part time(no insurance - no option). Now taking Morphine morning and evening for the pain in my sternum which seems to be spreading. But I am now happily addicted and content to be so if it makes life more bearable.
Agree with Sadie… Well done Tina - We’ve reached page 100!!! Did you think we would get this far?!
Good thoughts and wishes to you all.
Jo xx
Hi ladies can any advice wellmeant i can seem to put the link on for him thanks
Wellmeant says on 19 Jan 2012 22:21
Got results yesterday - not very good but could be a lot worse. She is tripple negative.
My wife’s breast cancer (stage 4 grade 2)has spread to her lymph nodes in the L H side of her neck and also into her L H lung and has started activity again in R H brest, underarm, nodes on R H breast bone, neck and R H lung - she starts treatment Taxol & Avastin in two weeks (awaiting funding confirmation, but should be ok) on 3 weekly cyles she’ll have Taxol & Avastin 1st week, Taxol 2nd week and Taxol & Avastin 3rd week then a week off and start again. fingers croosed has/is anyone having this treatment.
So into the breach with our best foot forward POSITIVE DEFIANCE, I can only imaginge what she is going through but with my wife & I it is OUR journey and I’ll do my best for her.
Yes any advice gratefully received
Got our scan (jan 3rd) results yesterday - not very good but could be a lot worse. She is tripple negative.
My wife’s breast cancer (stage 4 grade 2)has spread to her lymph nodes in the L H side of her neck and also into her L H lung and has started activity again in R H brest, underarm, nodes on R H breast bone, neck and R H lung - she starts treatment Taxol & Avastin in two weeks (awaiting funding confirmation, but should be ok) on 3 weekly cyles she’ll have Taxol & Avastin 1st week, Taxol 2nd week and Taxol & Avastin 3rd week then a week off and start again. fingers croosed has/is anyone having this treatment.
So into the breach with our best foot forward POSITIVE DEFIANCE, I can only imaginge what she is going through but with my wife & I it is OUR journey and I’ll do my best for her.
BAXCKGROUND: My wife was diagnosed with stage 4 grade 2 breast cancer in February 2011 in her right hand breast, lymph nodes under her right arm, lymph on her breast bone and in right hand side of her neck there is also mass in right lung, unfortunately it is in-operable. She has had chemo (mixed results) and then radiotherapy in September 11 which had knocked her tumours back considerably but it is was all still there but inactive.
Also this forum is great for advice surport to have a moan on or to have a rant to someone when u are awake at night with se and meds why don’t u see if y wife will come on we will love to meet her we are all lovely ladies here sometimes it’s easier talking to someone outside the family tc Laura
Hi Tara - So nice to hear form you. Can we see the art work anywhere? Anything on line?? Sounds very exciting!! Well done! It is certainly not a wimpish thing to do to consider treatment options (including not having any!!) - I think it is a very sensible thing to do at every stage. To sit and think and evaluate!! The Penny Brohn cancer centre will give you the time to reflect. I went on a different course after primary diagnosis and enjoyed a few days away!
Wellmeant - Welcome!! I have had taxol / avasin too. (bone and multiple lung mets). Having weekly chemo (with one week off in 4) is hard going. It tends not to knock you down so low - but it is every week, which is hard!! I took an extra few weeks off for holidays etc which was great!! My bloods were fine and sickness (which im very prone to) controlled. But the best news is that IT WORKED!!! It reduced all the lung mets (too many to count at first) to two or three. Towards the end the Taxol / Avastin did stop working and my final scan showed that these few remaining mets had started to grow again - so I switched to Carboplatin after 18 Taxol / Avastins. However, it did a GOOD JOB and ho[pe it is the same for your OH too!! You have a wonderful attitude - good luck to you both and keep in touch!!
Hi to everyone else!! Off to my Goddaughter’s 18th Birthday tomorrow. The theme is 1994 (the year she was born) so we are going as the Flintstones (film out in 1994)…so animal print toga packed!! I look very fetching (NOT!!!)… but you can call me Wilma!!
Sadie Xx Xx
Hi all
Hi well meant
I’m on avastin only at mo, started in July with paxitaxol n avastin weekly, finished paxitaxol after 14 wks cos I had infections in finger nails. But all ok now. My SE s otherwise were ok, no sickness or nausea. Paxi does effect your fingers n toes too with numbness, but is ok, nothing too extreme.
Hope your wife dosnt have many SE with the chemo, good luck and best wishes to you both. Keep in touch, this site is grt for info and support too.
Hi to everyone, enjoy your weekends, Sadie yours sounds like you’ll be having a good time dressed as the flint stones…bril
I’m having lunch and shopping with 2 of my friends , looking forward to a catchup with them.
Love n hugs. Sandra. Xxx
Quiet weekend on the thread…
Hope it is because everyone is ok nd having a good time!!
Mine was unusual…wycombe wanderers football match…dressing as wilma flintstone with kids nd oh, bam bam, pebbles nd fred for a party…bed at 1am…watching daughter have first pre 17 driving lesson on air field!!! Even so it was all v busy, i dont feel too tired!!!
Hugs to all nd hope you have made some memories too this weekend!!!
Sadie Xx Xx
Lovely post Sadie. Sounds like you have been having a fabby weekend… I’v just beenvegging out after Chemo on thurs as the SEs are kicking in… But nice family weekend watching telly and having laughs.
Love to all
Lulu xxx
Hi everyone
hope ur all feeling as well as can be this wkend?
Lulu you are nearly there now- bet u can’t wait to get the last chemo over with. Get plenty of rest xx
sadie your weekend sounds lovely. U can’t beat family time can you! Xx
laura hope ur still feeling ok on the xeloda + hope ur hubby is loads better xx
Wellmeant- welcome to our very friendly thread! Wishing your wife all the very best with the tax-avastin combo. There have been some great results on here with that treatment so hopefully your wfe will have a great response too! Xx
tara/ Jo- so good to hear from you! Great to hear you’ve been keeping busy and doing so well! The art stuff sounds fab! Stay well + keep in touch xx
Jo- how are you doing ? Hope ur bloods are holding up + u haven’t needed anymore transfusions xx
Rachel, as ever we are all thinking of yu ((Hugs)) xx
sandra + wendy hope you ladies are ok- wendy good luck tomorrow xx
hi to anyone I haven’t mentioned too
I’m feeling ok-ish after chemo on Tuesday. Had a really upset tummy yesterday which has settled now thankfully, and feeling pretty weary but hoping it’ll pass before my next hit on Tuesday. Have felt a bit chesty the last day or so so I’m keeping an eye on my temp. Had a nasty pain in side of my head on and off since last night which has worried me a little but praying it’s nothing sinister. I sound like a right hyperchondriac don’t I!! Sorry just telling it like it is lol!
Seeing onc on Tuesday so going to discuss the holiday. Have found one we want to book for 4th feb so she had better agree- I’ve bought suncream and everything!!
Can’t believe we have hit the 100 page mark! Well done everyone and thanks for your ongoing support. Been thinking of the ladies from earlier on in the thread who are no longer posting- especially the lovely claire who lost
her battle in august. Still really miss her. Also thinking of scaryfox, sandra, Kelly, margaret and others who haven’t posted 4a really long time. Tnbc sucks big time
Love to everyone on here xxx