Mich congrats on the last EC! Suebea, hope you're feeling better.

interesting that you guys all do the EC first but I did the Paxo and carbo first.

On that note, my heart MRI showed slightly reduced function :( Had more tests yesterday to see if any reason for it but it looks like it's just the way I am so they possibly won't go ahead with the EC. Very nervous as to what that means in terms of treatment etc. Don't know if there's another chemo they can use instead although presumably ec is the best one otherwise they wouldn't have suggested it. Also wondering if it means no more chemo at all and just straight to surgery. And since it's my left breast can I now not have radio therapy in which case will it be a mastectomy instead of a lumpectomy. So many questions.... Seeing the cardiologist and breast surgeon on Monday and oncologist on Tuesday so should have a plan by then.

Suebea and Davia are they giving you meds to protect your stomach right before you get the paxo? My stomach was a bit up and down whilst on it but nothing too drastic.

Have a lovely weekend all.

x

Hi Claire,

I'm sorry that you're treatment plan isn't going as expected but the oncologists are experts. I know they will have experienced these setbacks before and will know the best course of action. I can only imagine how you must be feeling but I know you will feel more reassured after you have seen the breast surgeon and Oncologist. Keep us updated.

I do have medication before the Taxol but my stomach is also very up and down. I found the EC easier all round. 

On a positive note, I tested negative for the BRACA gene. To say I'm relieved is an understatement.

Mich, how are you doing? How's the hair? I'm still using the cold cap although the nurses probably wonder why!! My hair looks terrible, really thin and bald patches on top. I hold on to the hope that the cap will help my hair grow back quicker.

I hope Davia and Roz are both doing well, keep in touch.

Love to you all, stay strong Ladies

Sue xxx

Hi Claire, 

Also sorry to hear your treatment plan has changed, I can imagion its a worry, let us know how the meetings go with oncologist and breast surgeon, I'm sure they will have come a cross this many times and will take great care of you ️ 

I have pre medication before the paxo and carbo, I have had to have my dose reduced by 20% as it really upset my insides, no sickness but really very sore bowel, I also had a week off to allow it to heal, so I'm keeping all fingers crossed it doesn't happen on this cycle, I'm 6 days in, feel very tired but hope by mid of next week to be feeling a bit better.

Mitch have you started the paxo /carbo, if so hope it's being kind to you. 

Claire i have noticed my hair is growing, VERY slow but thickening up rather than length, so fingers crossed you start to see some progress, 

Have a good weekend, stay well ladies 

Xxxxxxxx

Hi Ladies,

Thank you I'm doing ok, my last EC now done whoop whoop!  Went ok, no sickness just the pain in my body.  I stayed in bed all day yesterday, which isn't like me.  Think I was generally feeling bleugh and didn't help it was all grey outside, but hey we're allowed to have days like that, as we are real fighters!

Sorry to hear your plan has changed Claire.  Hope today went ok and let us know what they say tomorrow?  As Davia said, sure there are other options out there and i know they do adjust treatments quite a bit for individuals.  

I'm waiting on my next date for cabo / taxol.  It was going to be on the 10th Dec but that needs to change as now my pre-assessments and treatments are too close together for weekly and it will affect the results of my blood tests.  I chased them again today so hopefully I'll hear this week.  I was due to go in on Christmas eve and New years eve, I could change that and defer until the new year but thought nah rather just get it over with.  Not as if I'm going to have a house party! Hmm maybe a should a non-alcoholic pj one;)

Seems like taxol takes a bit of adjusting to, guess the norm with all the drugs.  My sickness was upped from my first treatment so hope that will continue to carry me through.

I wore the cold cap, still deciding if I'll continue with weekly.  I'm not sporting any new bald patches, err that i've noticed.  Just the lovely fine, fluffy annoyingly thin hair lol! I've still got my headbands, I ordered some headscarves from amazon but dont like them ha ha! Might experiment with my own scarves seeing as I own so many.

Hope you all keeping well.

xx

P.S.  Great news Sue on your BRCA result.  Hope I get mine soon too! :)

Hi Mich

Half way for you then that's a good Mike stone, the paxo carbo hasn't been as bad for me, the first week after I feel a bit delicate, and energy low but better than I did on the EC, I had my weekly dose of paxo yesterday and don't feel bad at all, I've had a loose bowel but it's known to do that or the other way, I've tried to limit my fruit and sugar like Rozza suggested, anythings worth a try

I have my last combo, pax carbo on the 30th Dec so just scrape through Christmas, my last paxo is 13th Jan, then surgery, I'm getting very nervous about surgery, they haven't really discussed what surgery yet, the oncologist said another scan, either CT or pet so surgion has better idea, I do hate scans

Have they told you what surgery your going to have after chemo? 

Oh my hair, well fluff is still there, so hasn't come out with the pax/carbo and my leg hairs are growing can't shave though as they say to risky for infection, so may try smelly veet but you may find your hair starts to thicken a bit on paxo, oh I didn't do cold cap, just shaved it off when it started to come out in hand fulls 

Clair hope today goes well

Keep well ladies 

Xxxxxxxx

Hello ladies, 

I'm thinking of you all. Sue sorry to hear taxol is giving you a hard time but amazing news you don't have BRCA so you're over the hump and nearly there for the hard part :)

Mich no more EC which is awesome!

I hope you're all keeping warm, away from germs and getting ready for a merry Christmas.

Roz xx

Hi Ladies,

Roz, it's lovely to hear from you. I hope you are feeling stonger and are now fully recovered form your treatment. I am not having a great time on Taxol, the side effects have hit me a lot harder. I am having high doses fortnightly. It was touch and go whether I had it at all on friday as my liver function was reading far too high. The chemo ward took another blood test and after a 2 hour wait, I eventually had my second Taxol. I was feeling really emotional on Saturday which came out of the blue. I think the enormity of what we are all going through hit me hard. 

How are the rest of you getting on? it's a tough old road but there is light at the end of the tunnel.

Lots of love to you all,

Sue xx

Hey ladies,

How you doing?  Sorry for the delay, I've been struggling a bit too.  Think its hit me now all this lark we are going through.  It's taken me longer to recover from my last EC, thought i was doing ok about 4 days after the chemo and then wham, i felt crap.  I struggled with pains in my body, migraines and headaches and just being low and morbid, which isn't like me.  Dont think the weather helped as it was raining every day and I just couldn't get past this brick wall.  Didn't like it at all, dont like feeling blue.

I started to feel better this weekend and have been out and about walking. So glad I have got over my morbid stage.  I went to see the oncologist today and they are happy with my progress and will have another scan end of Dec or early Jan.  I'm really not sure about my opp yet, guess they will discuss with me once chemo is finished.  I'm still waiting for my BRCA result which oncologist has chased, hope i get it soon.

I'm back at the hospital bright n early tomorrow morn for my pre-assessment and then chemo on Tuesday.  Although apparently my dates are too close together for weekly chemo, as my bloods wont be accurate so i need to change my treatment dates.  Hopefully the will reconfirm that with me tomorrow.  Davia did you have the same with your weekly, where your blood tests and chemo have to be further apart?

Tonight i went to a local group, called Bosom Pals.  They meet up once a month and was my second visit.  We had nibbles and i got to wear my xmas jumper, seeing as though i have missed out on all the work parties.  The team are going to rotterdam next week, lucky buggers!  Anyways, was lovely to see them all again, the group has been going for 25 years.  I'm the only one still going through chemo, actually think they quite surprised i'm going now but happy to have me there. A few of the ladies went through this in the early 90's so all a bit different now.  I'm known as the triple negative girl, great haha!  There is one lady there that was tnbc too, 15 years ago now and she was 34 when diagnosed.  She is all finished with her treatment, quite different from what we have had, different drugs and a different port thing directly into her chest, portacath I think.  She did have a tough time and was i'll with each dose, so glad I'm doing better than that.

Do you ladies have any groups in your area?  If so would you join them?

Funny you should mention Rozza's cousin Davia, i think about that too when i'm feeling down, as i know its all in my lymph nodes an i had big buggers!  I can fight this.

How you doing Claire?  Hope its all going ok for you on the other side of the water.  Let us know what your treatment plans are.

Hugs all around ladies.

xx