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Any triple negative survivors out there?

AnnDaw
Member

Re: Any triple negative survivors out there?

Ah no I think I'll go stir crazy. There was 125ml over last 24 hrs so only 25ml less than last 2 days. If I had a big poncho I'd be able to hide the drain and go out lol.Pam how are you doing with your hand?xxx 

Amanda10
Member

Re: Any triple negative survivors out there?

Hi Annie
Had mine in for about a week as well xx
AnnDaw
Member

Re: Any triple negative survivors out there?

Thanks Jane im glad that seems normal. I've got really good movement in my arm so it makes things feel more normalish and I did rest more yesterday as I felt quite tired. I'll be pleased when I can get out of the house for a while.xxx 

crazyjayne
Member

Re: Any triple negative survivors out there?

Hi Annie
I had a drain and that is perfectly normal. I had my drain in for 9 days. Just bare with it, and I agree with pam, you need to be resting, the more you move the more fluid in the bag I found! Just take it easy and it'll all come good. Take care, Jayne x
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Annie,  I didn't have a drain so can't say whether that's right or wrong.  Best go with what breast nurse says is okay.

 

It does sound as if you're doing a lot.  I didn't do much at all first two weeks other than the exercises but I did have both lymph clearance and lumptectomy at same time so I was different.  Try to keep bowels open with high fibre, fruit and water intake if taking codine or other opiates.  I got impacted stools and needed help from the DN with something up bottom.

 

good luck.

 

pam X 

AnnDaw
Member

Re: Any triple negative survivors out there?

I'm not overdoing it Pam just breakfast for us both washed pots and put some washing. I emptied my drain and from half 10 yesterday to half 10 today was 150ml does that seem normal? B/nurse says can come out when less than 30ml. Xx 

Whitfield
Member

Re: Any triple negative survivors out there?

Well done Annie.  Just don't overdo it with house stuff.  

 

Pam x

AnnDaw
Member

Re: Any triple negative survivors out there?

Thanks for messages well wishers. Op went well had to stay in hospital overnight bit stiff and numb down back of upper arm and doing exercises and light jobs around the house so far so good. Xx 

1852
Member

Re: Any triple negative survivors out there?

Hi pam hope you feeling  better hubby doing ok thanks we both want to lose weight but we are hopeless like our food too much m afraid 

Ann  hope all as gone well and you was able to relax 

I just wish weather would improve I feel the cold much more now but never mind could be worse I suppose best wishes to all DEN

Amanda10
Member

Re: Any triple negative survivors out there?

Hi Ann
Hope your op went well today Ann and wishing you a speedy recovery. ❤️
Sending lots of hugs to everyone else.
Just thought I'd mention had a few hair extensions on over the weekend just to chin length until mine grows a bit more. They are raccoon which can be put on post chemo hair. They do a recovery hair programme and for people who have had chemo they cover a large proportion of the cost. I'm really pleased with them so thought I would pass on the info xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hi A nice,  how did it go?  Wishing you a speedy recovery.

 

sending love.

 

px

Les53
Member

Re: Any triple negative survivors out there?

Hi Anne, I'll be thinking about you today as I know you were having node clearance today , hope it's not too sore xxx take care and rest up, another step nearer Xxx
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Den - how's the family and hubby?

i didn't know it would be this painful re the operations.  I'm told he gallagioon removal was a problem and apparently he have to scrap the bone to get it out!  It's getting a bit better but hit me gown what with breast odeama and having had a serious cancer.  I'm improving now.

 

what would I do without you lovely ladies?

 

hoping the gall bladder will be okay as GP said it may need to come out if my liver keeps shoeing signs of stress.  It's full of stones.  I can't take another op.

 

will feel better when GP has examined breasts.

 

my get some lymphodema sessions from the L charity.

 

lover to all.

 

pam x

AnnDaw
Member

Re: Any triple negative survivors out there?

Ah thanks Den I had right mastectomy 9th October last year and came through fine.Im scared of getting the complications after that I hear and read about. I don't really know much about relaxation techniques maybe something I could find on you tube do you think?  Xx 

1852
Member

Re: Any triple negative survivors out there?

Hi Ann daw good luck with node clearance try not to worry too much can you do some relaxation techniques prior to admission .

pam I had a ganglion removed from my hand when I was 18 I had 12 big stitches and can still see scar I can remember I also had cyst removed from forefinger 4stitches had massive dressing on hand and finger for weeks trying to do things were very frustrating hope yours is improving DEN

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Ann/Daw,

 

You will be fine, as said best get this fine ASAP.  It's the gold standard so we're lucky as in some counties people don't get the service we do.

 

hand is out of operation at the moment so can't type much.  Ended in having 2 in 1 - cyst removal under thumb area and carpal tunnel expansion.  Very painful.

 

gettingGP to breast next for me next week as I can't do this at the mo.

 

good luck for Sunday. 

 

Pam x

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam I hope you're getting by ok with your hand out of action. I was due to have the node clearance op 28th but the hospital phoned me on Wednesday and asked if I wanted it brought forward to Sunday so I said yes  (may as well get it over and done with ). I'm really scared Pam I'll let you know how it goes lol.xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

Hi Jane,

 

sorry you you are here.  I had grade 3, stage 3 like you.  8 chemos, surgery and 20 rads.  I'm not sure why you need more chemos but am sure the hospital are doing this for a reason.  They know some TNBC Respond well to some chemos so maybe this is why.  We are all different and our cancers respond differently.  I was diagnoised August 14 so a year ahead of you.  You can do it but do see if you can get some counselling.  I found this really helpful.  It's horrid I know but there is light.

 

Oh by the way I also had cancer in the nodes so full clearance as well.

 

wishing you well. ,Pam x

 

Hi everyone,

 

my update is I can't do my manual drainage as the hand operation turned out to be more tricky.  Two operations in one.  Gangagloon removal and carpal tunnel.  I'm now in severe pain.  I do feel I'm being punished with so much going g wrong during treatment and so many other issues.  I'm scared in can't exaim the breast which had the cancer in it and the lymph fluid is building up.  🙁

 

Cant type!

 

p x

Jill1998
Community Champion

Re: Any triple negative survivors out there?

Hi Jane,can't help you with this query but I'm sure people will be along soon who can offer advice and support .Just wanted to welcome you to the forum and wish you all the best with your treatment .The helpline on the site is very helpful with individual queries re treatment they can also put you in touch with women who have similar diagnosis to offer you support .Jill.
crazyjayne
Member

Re: Any triple negative survivors out there?

Hi ladies, I'm new to this so bare with me!!! I was diagnosed in August 2015 at the age of 43 with TNBC and Pagets Disease (nipple cancer) and DCIS!!! I had 4FEC then 4 T, then a right mastectomy and full node clearance. The cancer was Grade 3 Stage 3 😢 I am now having 3 more chemo (carboplastin) then 20 rounds of radiotherapy! It helps to hear we are not on our own out there, I've read all the posts and it's good to see so many survivors 👍
BUT, I'm so scared 😢
I thought after the 8 chemos to start then surgery maybe a bit of radiotherapy might be needed but did not expect to have more chemo!!! Why?? Does this mean they think it may have spread? I've been very brave until now (everyone saying how amazing I am, always smiling) but inside, I'm broken. That's why I thought I would try this, maybe others who are experiencing this awful thing, can help me and in return I can help them. Thanks for reading lovely ladies xx
crazyjayne
Member

Re: Any triple negative survivors out there?

 
Whitfield
Member

Re: Any triple negative survivors out there?

Oh and yes I'm trying to manually drain the breast.  The lympodema service is hard to get at Royal Marsden and there is a wait.  It seem the NHS do not think this is a priority.

 

Px 

Whitfield
Member

Re: Any triple negative survivors out there?

Hand op is for cyst removal but at different hospital.  They will check the lump after its removed.  Fingers crossed its nothing more sinister. 

 

I wasn't given a choice re lumptectomy or mastomecty but my tumour was 31mm which is quite big.  They can tell you how the nodes responsed I would have thought.  I was paid for four months by my employer so can't complain but we will have to wait until 66 for state pension! 🙁

 

broccili is supposed to be very good for us but I did try to juice this and it tastes awful so just steaming it now.  Have a cancer blasting fruit juice daily.  Flax seed, blueberry, strawberry, spinach and banana.  Put in a Lot of spinach in as its that which is very good.  Tastes okish.

 

good luck with the nodes xx

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam I will take some and make sure I've always got some in at home. Do you do the manual drainage by massaging Pam?. This neuropathy in fingers and toes drives me mad it feels like they are numb and frozen all the time but it will go away when the chemo is out of my system. Pam as I had mastectomy before chemo how do I know my response to the chemo because tumour was gone so nothing to measure it by.Oh also it's me who's 56 nearly Amanda is 49 today ducky. Ive been off work since diagnosis couldn't have kept my mind on task. They will pay me for a year so what the heck.When you juice veg what is a nice combination as I have to start this soon.I love fruit smoothies but can't get my head around drinking vegetables so need a nice recipe or two. Pam what is your hand op is it separate from this b/c thing?xxx 

Whitfield
Member

Re: Any triple negative survivors out there?

AnnDaw - do take some antibotics on hols with you just in case.  Apparently my under arm pain occurs in approx 50 per cent of people who have node clearance and the hospital is to write to GP to put me on an antidepressant which is used to help pain.  Neuropathway pain is what I have.  It's odd as some days it's okay and other bad.

 

Off to do the manual lymph drainage.  I think I can see signs of improvements and the sun is out.

 

Good luck for the op and remember to keep up the exercises as they do help with regaining movement.  Will do these after drainage.  Then off for a brisk 30 min walk which I'm told can contribute to general health and reduces reoccurrence.

 

what with this programme I've no time to work!

 

sending love.

 

might be off line later next week as hand op is Thursday if not cancelled.

 

pam xx 

Whitfield
Member

Re: Any triple negative survivors out there?

I'm looking up to you Amanda.  Your same age as me and had same number of chemos and you managed to return to work.  I found it all too much and had to quit.  Pain and stress with the job and possible reoccurrence told me to stay home.  I'm now feeling stronger but no job and at 56 who will want me know being older and having suffered cancer.  But hey I'm still here.

 

px

AnnDaw
Member

Re: Any triple negative survivors out there?

Thanks Amanda I'll have a look for it. Mine was coming back white with bits of dark and now its not much and just white. I'm 56 a week today but like to be trendy and I think it makes you look younger. I bought the fast shampoo and conditioner but am now saving it till hair kicks in again. (Think it may have been you who told us about it).I'm just glad I'm done with the chemo its left me in a right state with neuropathy in feet and nails coming off. Never mind after op onwards and upwards hopefully.xxx 

Amanda10
Member

Re: Any triple negative survivors out there?

Hi Ann
I got the solar oil online think you can get it from Amazon , I also wore black nail varnish all through which I think really helped . This time last year I was completely bald I had 4 fec and 4 docetaxol . I've now got about 3 inches at side and two on top it took its time coming but just looks like a short haircut now. It grew back really dark so I've had it bleached , wanted something a bit funky ( even though I'm 49 Tom ) lol. Xxx
AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Amanda thanks for the advice and where can we get solar oil?. Glad you've got some normality back that's what I'm looking forward to.I was getting a nice covering of hair after fec but the abraxane I had to have due to allergic reaction to docetaxel must be a bit harsh as hair seems to be going again.Node clearance 28th April then 15 rads at some point after that.Nice to hear from you Amanda.xxx 

Amanda10
Member

Re: Any triple negative survivors out there?

Hi ladies
Hope everyone is doing ok especially those ladies going through treatment at the moment. Ive not posted for a while had chemo x8 rt mastectomy and 15 rads last one July 2015. I went for my first mamo on the good boob last week and am waiting the results.
I am back at work now and just started full time again. I'm not doing too bad the issue I have is fear at every little ache and pain which I wouldnt have thought about before. I just try and keep busy so my mind doesn't wander .
I read a few ladies having probs with nails. I found solar oil really good I massaged it in every morning and night and it did really strengthen them up again.
Sending lots of love to you all ❤️ Amanda
AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Lesley nice to hear from you.I should have had last chemo 16th March but due to allergic reaction to docetaxel had to go to city hospital Nottingham for Abraxane as my hospital don't fund. It's still a taxane and is normally used to treat advanced b/c. My onc said nhs were splashing out on me as it's expensive.Anyway had last treatment 1st April and am so glad it's over. Apart from 4 nails already gone my feet have been bad with neuropathy. After this last one I've had bad pains in knees and shins as well. I didn't post for a while but still came on to see how other ladies were doing. Are you ok other than nails. Pam has had a bit of a hard time lately but hopefully things are getting better for her now. I have node clearance 28th April then fuerteventura for 2 weeks 28th may just hope I recover without complications for holiday.Have you finished your treatments now Lesley.?keep in touch lol.xxx 

Les53
Member

Re: Any triple negative survivors out there?

Hi Anne how are you? I think you must have finished chemo by now, I had my last on the 7 th March. Hope you are doing ok, I'm having exactly the same problem with my finger nails! Can't believe that it started after chemo was finished! Haven't posted for a while so just wanted to say hi xxxx

AnnDaw
Member

Re: Any triple negative survivors out there?

Thanks Den my thumbnails are literally hanging on by a thread and would be better if I could get them off but they would be sore. I'm having to keep plasters on all the time so I don't catch them on anything.As for chemo they had to change the last 2 to Abraxane as I had a reaction to docetaxel which was quite scary. Anyway so glad it's done and moving on to next step.xxx 

1852
Member

Re: Any triple negative survivors out there?

Pam like we said at beginning of this journey I am there for you glad you felt happy with how you were treated it makes a difference.

Ann nails do take some stick don't they mine are still weak and break very easily but it's just a minor problem in the scheme of things glad you have got through chemo and hope all goes well for you 

take care both of youDEN

Whitfield
Member

Re: Any triple negative survivors out there?

Many thanks Ann and Den.  I was pleased with the visit as they look a proper look this time.  I'll just have to live with cysts and the breast lymphodeama.

 

Ann - So pleased that you have finished chemo.  When you next see the surgeon remind them you want to see the results as you had to change drugs and want your status re pathology report.  And good luck.

 

The nails do improve in time.  Just be really careful with the hand your surgery is on as you do t really want to loose a nail on that said.  I have antibiotics in in medicine cupboard just in case I think I may hurt that arms as I don't want hand and arm odeama.  Let us know your results and we'll done finishing chemo.

 

Den - you are my constant in you're always there to offer support to which I'm most grateful.  Cancer certainly has taken two years of my life and I'm gradually crawling back.  Sending love.

 

 

pam x

AnnDaw
Member

Re: Any triple negative survivors out there?

Hi Pam pleased the lumps are only cysts that should put your mind at rest.I had my last chemo yesterday thank goodness but it's left it's mark. My nails are in a state thumbnails hanging on by a thread. I think the abraxane must be harsh. Anyway done now ready to get my head round next step.So glad you're ok Pam.xxx 

1852
Member

Re: Any triple negative survivors out there?

Glad to hear that pam you can now enjoy your w/end these cysts are a source of worry I know I have probs with them and my remaining breast is painful due to them 😀💐

Whitfield
Member

Re: Any triple negative survivors out there?

Several cysts.   Two drained.  Do good news.

 

breast very swollen though 😞

1852
Member

Re: Any triple negative survivors out there?

Hi pam how did it go today hope all well DEN X

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks Den.  I think it may have been the other way round 22do and 88 don't.  I'm not looking to double check though.  Can't wait for tomorrow for appointment.

 

must try to stay positive.

 

love.

 

px

1852
Member

Re: Any triple negative survivors out there?

Forgot to say 88%dont!!
1852
Member

Re: Any triple negative survivors out there?

Oh pam what have everyone told us about stats !! As you say a lot of things can change stats a lot of things can change in 5years anyway look at the advances they are making now . Glad pain subsiding good luck for Friday let us know DEN👍
Whitfield
Member

Re: Any triple negative survivors out there?

Thanks everyone.   The last couple of days the pain has subsided.  It was pretty bad.

 

On Friday I have hospital appointment for those other lumps which I'm praying are cysts.

 

Did a silly thing and looked at my stats using that tool everyone uses.  I had t done this nor had the hospital told me my stats and was shocked at results.  22 percent with my original diagnosis die within five years.  But am now thinking with my PcR to chemo this would change these to a better percentage.

 

Love to you all.

 

pam x

Marina
Member

Re: Any triple negative survivors out there?

So sorry to hear you are having such a hard time with all this. Keep smiling!
Marina
1852
Member

Re: Any triple negative survivors out there?

Hi pam sorry you are still struggling think you know deep down all you went through was worth it we are still here it's along time until you see pain team unfortunately I have observed local team a few times they are very good hope your team are . Keep your chin up x

jinny thanks for post nice to hear from someone further down this journey and doing well long may it continue 

take care xDEN

Whitfield
Member

Re: Any triple negative survivors out there?

So nice to hear from you all.

 

im really struggling with pain under arm.  It's so extreme I sometimes think was it worth it.  Today is so bad I've had take oral morphine.  I just seem to got everything, cording, lympodema, pain and don't know what to do with myself.

 

i have a first appt for pain management in June.  Been waiting for this since Feb.

 

sooooo fed up.

 

Px

jinny2611
Member

Re: Any triple negative survivors out there?

Hi Pam hope your well just to let you new ladies know im nearly 2 years out from stage 3 had 2 tumours and 9 positive nodes im still trying to find my normal anxiety still there but much better than a year ago keep strong ladies and keep going xx

1852
Member

Re: Any triple negative survivors out there?

hi pam I do remember you having problems with cysts  when going through chemo hubby is good thanks grandkids growing up fast. It is difficult when boobs are lumpy isn't it anyway have a good Easter and take care X

Whitfield
Member

Re: Any triple negative survivors out there?

Ann - I was a day case for the lump removal and node clearance.  No drain, just a wound cover and told to do excercises from next day.  First week very gentle then more one to others.  This is really important to get the shoulder back working and avoid lympodema.  I u fortunately got a lot of shoulder pain and still can't get hand behind me and it's now over a year since op.  Had phyiso but think I now have to max movement I'll get.  Also got breast lympodema but I'm still here.  Your breast care nurse should be able to give you the details before the op.

 

Den - sorry about chest pain and glad you lump was cyst.  I'm hoping mine are also cysts.  As you know I seem to be riddled with them.  You recall the ones in the lady garden and emergency op during chemo.  The hand is one and I cal feel three lumps in breast.  So hard to distinguish between what's a cancer lump and cysts.  App next Friday.  

 

How hubby and grandchildren?

 

Pam x

Marina
Member

Re: Any triple negative survivors out there?

Just popping in to say hi. I'm on my 5th chemo cycle (of 😎 so the end is in sight.....
Good to still recognize some names as it's been ages since I checked in.
Marina