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Any triple negative survivors out there?

jinny2611
Member

Re: Any triple negative survivors out there?

Hi Pam I think you had treatment same time as me I had full node clearance I sometimes get a feeling of tightness were my masectomy is I get the odd shooting pain and terrible itchiness which is so annoying as there is no feeling there. They say we can feel alsorts of pain which could be all the nerve endings. Have you always had pain there? Does it come and go or constant there remeber the 2 week wait and if in doubt we get checked out . I have a large fibrodemna in other breast and feel like it's grown which freaks me out at times incase it's something new the fear never leaves. Go and get it all checked out Pam to put your mind at ease please let us know how you go keep smiling Pam youre doing great take care luv jinny xx

Amanda10
Member

Re: Any triple negative survivors out there?

Hope all goes well for you tom Pam xxx
suzanne2
Member

Re: Any triple negative survivors out there?

Wouldn't that show on the mammogram tho pam?? My breast is still red and swollen too xxxx
Whitfield
Member

Re: Any triple negative survivors out there?

They think I have breast odema and are a little concerned that my breast is still quite red and swollen.  Given a peice of foam to wear in bra and told to do lymph drainage plus wear bra at night.  If no improvement then need to see specialist.  Worried about inflammatory breast cancer now 😞

suzanne2
Member

Re: Any triple negative survivors out there?

I still have some pain pam in my boob and under my arm, hope everything is ok xxx
suzanne2
Member

Re: Any triple negative survivors out there?

All ok had an ultra sound scan and it's just a small cyst, so relieved xx
Whitfield
Member

Re: Any triple negative survivors out there?

I have another small lump which I have to get checked tomorrow and still getting a lot of pain.  I'm told pain can be normal for several years with full mode clearance.  Is anyone else still getting g pain.  I'm nearby a year since surgery.

 

scared about new lump 😟

 

Px

bernadetteh
Member

Re: Any triple negative survivors out there?

Thank you P but I have NED at the moment, so I'm back working full-time and living my life to the most! xx

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Suzanne please try not to worry too much you've come a long way so I feel sure you will be fine.xx

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Lesley yes had 1st docetaxel last wednesday was good until Saturday then came bone aches tender fingernails can't taste much and soreness where the sun don't shine.I rang triage nurses as I thought it maybe thrush and she said ring doc for cream. Got that and instant relief so just taking paracetamol for aches now and hopefully be a better day tomorrow. Don't rate this regime at all lol.xx

Les53
Member

Re: Any triple negative survivors out there?

Hi Ann yes still here had 4th docetaxol on the 22nd and been a bit out of it since then!! Hope u doin ok I read you'd started on the T x hope all the rest of you lovely ladies are doin ok xx
Lesley X
Whitfield
Member

Re: Any triple negative survivors out there?

Oh, Suzzane how stressful.  I have lots of cysts and many lumps and. Umps and know this is very stressful.  At least you know they're being very careful.  Do let us know how you get on and best wishes.PAM X

suzanne2
Member

Re: Any triple negative survivors out there?

Hi, I've had a call from my breast nurse today to say they want further images of my other boob as a something as shown on mammogram, she said it may be because I moved and that's caused a shadow or it may be a cyst, as I can imagine I am beside myself with worry!!!
Whitfield
Member

Re: Any triple negative survivors out there?

Hi B,  poor you this sounds horrid.  I thought TNBC was one that responds well to chemo.  And to have it four times is so unfair.  My heart goes out to you.  Once for me so far, and fig gears crosses.  Px

bernadetteh
Member

Re: Any triple negative survivors out there?

Ok, Marina, I will check back in tomorrow before work.

bernadetteh
Member

Re: Any triple negative survivors out there?

Hi P, I have had chemo 3 times as I have had BC four times. My first diagnosis in 2002 was grade3, slightly HER2. Second, third and fourth diagnosis grade3, Triple Negative. My Onc doesn't believe chemo works for me.






Marina
Member

Re: Any triple negative survivors out there?

Oh Suzanne, it's done now. Hang on in there. Everything crossed for good news.

Bernadette I wrote a long reply yesterday to your comment (twice) but I see neither has appeared on the thread. Maybe because I included a link. Will try again later as I have to find the link again.
suzanne2
Member

Re: Any triple negative survivors out there?

Mammogram done, I cried as soon as I got there and all the way through it. Xx
Whitfield
Member

Re: Any triple negative survivors out there?

Bernadetth,  what was your first diagnoises?  Why have you had to have chemo four time?  And what is not working for you?

 

sending love.

 

px

bernadetteh
Member

Re: Any triple negative survivors out there?

Very difficult question! My onc told me that chemo doesn't work for me, despite me having it three times. For my 4th diagnosis - which was this time last year, I have had no chemo just surgery and am presently NED. I fnished my third regime of chemo on Feb 20th 2014 and had my fourth diagnosis 10 months later. So difficult to know what the chemo does and doesn't do!

Whitfield
Member

Re: Any triple negative survivors out there?

Suzanne,  I know how you're feeling as I felt same at my first mamograme,  do phone the support line and good luck.

 

pam x

Lizzy_BCC
Member

Re: Any triple negative survivors out there?

Hi Suzanne2, 

 

It is great to see the support you are getting here and I am sorry you are going through this anxious time.

 

If you want to talk you can call our support line at 0808 800 6000 who will be able to talk you through what to expect at your mammogram and offer a friendly ear. It is open 9am -5pm on weekdays and 10am -2pm on Saturdays.

 

Best wishes, 

 

Lizzy 

 

Digital Community Assistant 

suzanne2
Member

Re: Any triple negative survivors out there?

Pam I'm so scared I feel sick with worry xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Suzanne,  wishing you good mammogram e results.   Pam x

suzanne2
Member

Re: Any triple negative survivors out there?

Ladies I have my mammogram tomorrow and I'm absolutely terrified x
Amanda10
Member

Re: Any triple negative survivors out there?

Hi Ann
I still pop on from time to time. Back to work now three days so dont have as much time on my hands as before . Good in one way as it stops my mind going to the dark side. I hope the docetaxol goes ok. xxx
AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Suzanne thought you'd left us to it. Glad you ok I am too. Start Docetaxel tomorrow so a bit nervous of what to expect just hope I don't have that reaction I've heard about. I'm sure I'll be fine just want to get it done and move on. Nice to hear from you anyway. Xxx 

suzanne2
Member

Re: Any triple negative survivors out there?

Hi Ann, I'm ok hope you are keeping well,I do go on Facebook quite a bit but still look on here, how is everything going xxxx
AnnDaw
Member

Re: Any triple negative survivors out there?

Pam do you know where Lesley Amanda and Suzanne 2 and Sam B have disappeared off to haven't seen any posts from them lately wondering if they on Facebook mostly now. Are you on it im not.xx

Tania786
Member

Re: Any triple negative survivors out there?

Thanks Pam and Jinny. Fingers crossed hope my period return soon.?

I'd ask my onco about YES.
AnnDaw
Member

Re: Any triple negative survivors out there?

Thanks for reply Pam I know what you mean 1 site says 1 thing and others say something else so I'll have a look at the guardian see if I can find that article you mentioned.xx

Whitfield
Member

Re: Any triple negative survivors out there?

Tania,   Forgot to say with smear ask for a Lorazapam to help relax you and lub up regularly before.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Tania,  Try getting YES from GP as this may help.  Menopause will cause for lost of elasticity in vagina and can throw you into vagina asthrophy  which is what your are describing.  It's another awful affect of treatment which may stay with you if your hormones don't kick back in.  I've had the itching and stinging for a long time now and there doesn't seem much they can do about it.  It took me some time to find YES lubricant which is natural but expensive so get your GP to prescribe this.  Do discus all of this with your BC nurse, oncologist.

 

my hospital gave me a few samples of lub to try so it must be common.

 

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Hi Ann

 

My oncologist said,stop everything until after chemo so that's what I did. ,I'm now in cod liver oil only.  My GP said he would not let me take vit d as I should get enough to of this through diet but I feel differently.  I read in the Guardian that t some vits can cause cancer hence my not going back to them.  Google if you can. 

 

Hope pe this helps.

 

Pam x

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam im wanting to pick your brain about vitamins and supplements.I'm feeling confused about what to take as there's a lot of conflicting advice out there. Ive been taking a multivitamin 1per day that's a tesco own brand.From holland and barret I take turmeric 1 capsule twice daily.A 1 per day vitamin D3 and I was also taking Vitabiotics brand 2 per day 60% super strength omega 3 fish oil capsules.I've stopped taking the fish oil for the moment as I read somewhere that it can have an effect on how chemotherapy works and as I'm halfway through starting Wednesday on docetaxel I decided to not take it until I know better.What do you take Pam and in what doses? and did I ought to be taking B6 and B12 vitamins. The reason Im asking you is because your closest to my own diagnosis and treatment plan and your about a year down the line from me and always seem so positive.xxx 

jinny2611
Member

Re: Any triple negative survivors out there?

Hi Tania I'm 46 now 44 at digonse never had period for 20 months then xmas day I had a very heavy one I thought I was in menapuse but blood test showed im not. It can take anything up to 2 years for periods to return but usually lot sooner in younger women just few months xx

Tania786
Member

Re: Any triple negative survivors out there?

Hi all, i turned 37 in Dec and i was told that my period might return. I just wanted to know how long does it take? My last chemo was on 2 Dec 2015.
sorry but just want to ask if anyone else having problems with intercourse? We refrained from it while was on chemo but only tried to do it recently and felt like stinging and burning so stopped. But I'm due to havr my smear test in Feb and am really worried about that it will be very painful. Can someone pls tell me what shiuld i do? I'm due see my onco in mid feb and thinking of mentioning then.
tiff71
Member

Re: Any triple negative survivors out there?

Hi Suzanne,
I had 6 FEC-D which ended April last year. The Docetaxel knocked me around no end and I have the very worst joint pain imaginable still now. Some days are worst than others but even the good days are terrible. If I sit for too long I literally can't walk. It's hard because sometimes I need to rest so can be a catch 22. I find when moving around more the pain is generally a little better. I started taking 4 x high dose Curcumin (with pepper) and 6-8 fish oil capsules when my chemo ended and they helped a lot. If I ever neglect to take them for a day or so I can feel it. Drinking lots of water also helps. Again, I feel the difference when I dont.
Tiffany xx
Whitfield
Member

Re: Any triple negative survivors out there?

Watch out for vaginal dryness which is another menopause side affect.  You.can get a lot of this and itching.  Doctors can prescribe YES which is on NHS and completely natural. Or can give you other stuff.   Eve if your not doing sex the dryness can be very irritating ad another thing that you don't want to have to deal with.

 

hope info helps.

 

pamx 

suzanne2
Member

Re: Any triple negative survivors out there?

Hi Devon I don't know if mine will switch back on being 46 this week, but I hope yours do for u. Don't take any medication tho as none to take. Are u having treatment? Xx
devonyoung
Member

Re: Any triple negative survivors out there?

Hi there, if you don't have your periods or are on Zolardex then the lack of oestrogen will cause aches/pains and joint stiffness. I was told when my ovaries switch back on (hopefully) then that will go away. 🙂 

Tania786
Member

Re: Any triple negative survivors out there?

Thank you Whitfield for your msg.
I'm on fb younger women group. I think you need send them a msg to Edna Manchester and request access. Have a good weekend everyone!
Whitfield
Member

Re: Any triple negative survivors out there?

Not sure how  to join the FB page?

 

i also have red breast and waiting for appointment,  my rads finished in May 15 so it should be looking more normal.

 

wow we have been through the mill....

 

px

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Tania,  I felt like you in my last treatment.  It's a roller coaster and there is now right or wrong way to feel at any given point.  Pat yourself on the back as you have gone through hell to clear this desease from you.  Do talk to friends, family and given counselling as the journey does not finish when the treatment does.  We just get better at managing our thoughts.

 

also chat here for support. 

 

sending love.

 

px

suzanne2
Member

Re: Any triple negative survivors out there?

I felt exactly the same when mine finished, but u have done it now nits all gone, it will get easier tania but the worry will always be there I think, try and keep busy that's what I did xxxxx
Tania786
Member

Re: Any triple negative survivors out there?

Hi all, hope you're all doing well.
I just got back from my final radiotherapy appt. i know i should be feeling happy but I'm feeling really flat and down!! Don't know why? Did anyone experience that? Any tips on how to move on and stay positive willbe appreciated.

Thanks
Tania786
Member

Re: Any triple negative survivors out there?

Hi Suzzane, Yes, i did receive your private msg but am not able to send prvate msg,not sure why.

Today is my last session of Radiotherapy and I've been up with a cold and sore throat.

Can i ask you ladies if any of you had yoir periods back? How long does it take? I'm 37 and had two periods with first two cycles of chemo then after that they stopped.
suzanne2
Member

Re: Any triple negative survivors out there?

Same really Pam I have a panic most days about it coming back it scares me so much, I terrified for my mammogram which should be due soon. My breast is still read and has some oedema on it but I been told that's from the radiotherapy as I thought it was lymphodema. I looked after a lady the other day who had tnbc in 2009, are u on Facebook ladies xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hi Suzanne,  I'm doing ok. Finished treatment in May 15 and feel well.  I get scared most days but suppose that's normal.  Been back to hospital quite a few times with new lumps which they checked.  I do think it will come back so not thinking normally yet.  Lost job in Dec so now concentrating on getting  fitter.  I don't get aches and pains so I'm lucky.  I've not got full mobility back as I got a trapped nerve or somethings wrong with shoulder which I'm told is normal for us ladies post surgery ...node clearance.  I'm working on that though.  Got some lymphodema in breast which had th cancer and waiting for an appointment with clinic.  Not back in proper bra yet.   Still wearing ASDA ones.

 

im OK though. You?

 

pam x

suzanne2
Member

Re: Any triple negative survivors out there?

Has anyone heard off Dee, or Dee if u see this how is your daughter xxxxx