Any triple negative survivors out there?

[Dee1945]

Thinking of and sending prayers for all of you.

Love, Dee

[Dee1945]

Praying that all is well with you and your tests.

[Marina]

Hi  Hero67  that is such encouraging news. Thanks for charing and hope all goes well with the tests.

Marina xx

[Warcol]

Hero67 

thats fantastic and has helped. Praying your annual check next month goes swiftly and all clear! 5 years is a big milestone.

im 10 days in to radiotherapy and skin has started to breakdown. Skin nurse has given me dermal, cooling pads and granule gel to use and thus far it's working 

hope everyone else is ok

Colista x

[hero67]

I haven't been on this site for a while now, but I thought I would just let you know that it is 5 years ago today that I was diagnosed with breast cancer.I'm going for my annual check up next month and I'm keeping my fingers crossed that everything is ok. I am terrified of tempting fate and wasn't going to write anything, but I thought that any newbies might be relieved to hear about me. I found out it was triple negative on 25th November following a WLE and 3 lymph nodes removed (which were clear).I started chemo in January and was allergic to the taxane chemo and couldn't have it. I ended up having 6 lots of FEC followed by 20 rounds of radiotherapy.I'm doing fine and try to keep myself as active as possible. My diet is better now than it was, but I am certainly no angel! I hope this post helps .xxx 

[ChrisAsh]

Hi Ann & Dee thanks so much for your replies, I will look into the research especially any on the TNBC foundation site

Ann - great to hear you are all done and hope you have a lovely holiday. I'm so looking forward to the time we can get back to doing normal things.

Dee - your daughter sounds like an amazing warrior queen having worked all the way through her treatment and come through this twice. So pleased she is doing well now and I agree this site can help so much when you're in the middle of this nightmare.

Helly - thanks for your info about the ginger, I had no idea that might be helpful so will look that up too.

i won't be starting until I've finished my chemo as my onc advised not but want to get my facts straight and ducks in a row so I'm ready

chris xx

[Helly]

Try using BioHawk Relief, a natural blend of ginger. Aussie product getting amazing results. Google BioHawk for information.

[Dee1945]

   Tracy is doing well. She has not had reconstructive surgery yet and may never do it. She worked throughout both times except for a day or 2 here and there and 6 weeks after mastectomy. First time she had chemo and radiation. Second time chemo and double mastectomy.

   She has a new job and like you she will always be aware of what is going on in her body.

   We are very grateful and are praying for you and all the others who are going through this experience.

Bye for now. I'll be checking in every once and awhile.

Dee

[AnnDaw]

Thanks for your reply Dee I will look into the curcumin C3 complex. I'm just over a year since I had right mastectomy followed by 6 fec-t chemo, node clearance and 15 rads. I've recently started in a clinical trial for aspirin but obviously don't know whether I'm taking aspirin or a placebo. I do hope your daughter has finished with this awful tnbc journey. I'm trying to put the past year behind me but will always be on my guard.I started back to work 6 weeks ago so that feels good. I'm off to fuerteventura for 2 weeks on Saturday for some sunshine as it's starting to get a bit colder here in the UK. Anyway thanks again Dee and keep in touch.Xx 

[Dee1945]

You might try entering a Search on the internet for Turmeric use for TNBC. I am in America and can find several articles on it.  The main thing is to not go to companies that sell or manufacture the products.  Here we have WebMD.com, MayoClinic site and American Cancer Society, TNBC site. 

  Our daughter had TNBC twice and has gone through 2 rounds of Chemo and 1 round of radiation and then a double mastectomy. She insisted that I start taking Turmeric (Curcumin C3 Complex) with Black Pepper. I have been taking 1500 mg a day. She just doesn't want me to go through what she did.  She takes it too but I think she takes a little more.

  More and more is being learned every day and I pray that they will find a cure for this and all cancers.

Hang in there, do research there where you live.  Keep coming back to a Positive Attitude and Find the things that make you happy and do them.  I believe the feelings of hope, love, satisfaction, enjoyment, laughter, friendship and giving help us in any fight.

  Tracy is doing very well and I am so blessed to have found this site when she first found out she had it.  It was the first place I found that had long term survivors.  It helped me help her.

Love,  Dee

[AnnDaw]

Hi Chris I'm confused too. Ive been taking turmeric in a 1 a day capsule holland and barret brand. I also at one point bought a root extract one which was costly and I would have stuck with it until I heard you need to take with black pepper for absorption. I don't really like it added to food unless it's a curry or indian dish and as I don't want spicy food every day I feel I wouldn't be getting enough of it. So if anyone knows how much and the best way to take it please let us know. Oh and I was also told Chris not to take it during chemo but don't even know how true that is either. I stopped taking all of my supplements during chemo and like you say it all gets a bit confusing. Xxx 

[ChrisAsh]

Hello ladies, I haven't posted for a while either but nice to see that the thread is picking up. When I was first diagnosed in July I found the support on here - even just reading the posts of others- a bit of a life saver. I'm doing Neo adjuvant chemo and of EC then carbo platin / paclitaxel and now just over half way through. 

can I ask what you lovely ladies are doing about turmeric because I'm really confused . Don't know whether. I should take this as a supplement, during cooking or added to juices. I asked my onc and he was non committal.

chris xx

[Whitfield]

Miasma and others,

TNBC has more sub groups and no the presentation in my link below shows a highly cancer specialist professional explain types, outcomes and new thoughts on treatment.  It's a very interesting presentation with slides and Q & A after.

There is a lot to learn if you spare the time and listen to what she is saying.

pam x

[Miasma]

Hi, I have tnbc and have finished chemo and am having masectomy and lymph clearance this Thurs. Can anyone tell me what has caused this type of cancer? Feel afraid to ask docs.

[Whitfield]

https://laurarenegar.wordpress.com/2016/10/18/dr-careys-teleconference-link-whats-on-the-horizon-for...

Interesting watch.Pam x

[Taran]

I hope it goes by quickly. 4 weeks feels like a lot at the moment because it's every day, but I'm sure it will be over soon enough and I can start thinking about Christmas with my family. Can't wait this year!!xx

[suzanne2]

Kate it's much easier than the chemo, and your not there very long at all. I got sore during my 3rd week but it was bearable. It is tiring tho back and for, but it won't b for long xxxx

[Taran]

They have told me my clavicle area will be targeted too. The radiographer said it is because they know the lymph nodes there are the next place it would spread to and so they like to "sterilise" the area. I was a bit taken aback at first but once she explained it it makes sense. I'm glad you aren't finding it too bad so far Colista. I can't help but think the hardest bit will be going every day and so not being able to get much else done between that and the school runs. I'm probably being naive though and it will be a lot worse than that!!!xx

[netti37]

Clavical? Is that the neck area. Sorry for my ignorance. We all have to take faith in the doctors decisions and hope its all for the absolute best . Have you started rads yet warcol. How is it going xx. There just seems to be an extra challenge all the time. Long gone are the days when I wasn't constantly worried. But this is how it will be forever. I'm hoping that will be the case to, and after surgery it will be gone. I'm going out for lunch with my wonderful family later and will enjoy ever second of half term with my girls. I need to get them big girl pants on too. Have a lovely day ladies and thanks for you advice. Xx

[Warcol]

Hi ladies
I've just started rads and was a bit taken aback to find out their treating my clavicle as well as ancillary and breast! I'm having 15 and 5 boosters! I have good days and bad days! This weekend has
Been a mixture of both!
All i keep thinking is lots of other ladies have been given the all clear and been celebrating like I have only for 6 months a year 5 years later to have secondaries! Then in the other breath I think no one knows when their time is up so live each day likes it's your last and enjoy everything!
I have 2 little ones which I'm determined to see grow up so today I've got my big girl pants on and thinking happy thoughts!
Netti when they operate they may find the remainder of the tumour but it's dead and therefore chemo has done its job and you achieve pcr! Keep positive Hun!
Have a great rest of the weekend ladies 💕💕😘

[Taran]

I know what you mean. I don't mind going through all of it as long as it's done the job. But I have no way of knowing my response to chemo. I can't decide if that's a good thing or not. I still think you should try not to be downhearted until you get proper answers about your response. I know that's easier said than done!! I'm starting rads on the 1st November. Will be exactly 3 weeks between last chemo and starting. Having 15 and 5 boosters. So should hopefully be done by the end of November.xx

[Marina]

I had lumpectomy before chemo, however during chemo another tumour appeared. Nobody can give me an explanation as to how that happened!!! So they decided to continue and finish chemo EC x4 & T x4. Then another lumpectomy. Have since had PET scan and am cancer free. Have fecided not to do rads after teading so much about it.
Not sure if that helps.

[netti37]

During chemo i felt safe. I was lucky (loose term) to have minimal side effects. I just wanted it to be worth it. It's hard to stay positive and I've had a couple of low weeks since chemo ended. When do you start rads, how many are you having. Another hurdle to get over. Hope it goes ok for you. Xx

[Taran]

I think we are going to constantly have our security shaken. It comes over me in waves. Sometime I feel ok about it all, then other times I'm a wreck worrying about all the what ifs and possibilities. I've finished chemo but waiting to start rads now. It feels so good that the end is in sight. And so scary that after rads that's it. Just out in the big wide world hoping for the best!!

I can understand you being upset that the choice is taken away, even though you wanted to go for mx anyway. It feels so out of control on this journey so feeling like you can make that decision for yourself makes a big difference. And if you are anything like me I over think everything and convince myself that there's more to everything than there probably is!!!xx

[netti37]

Thank you Taran. Hope your ok. Have you finished your treatment. How did you get on with it all. x .. I'm seeing my breast consultant next week so may get more info. Bcn asked me if I had considered imm. Reconstruction so mastectomy is clearly now an option. Was going to ask for one anyway, but in may when dx doc said possibly lumpectomy. I think having that choice taken away has upset me too. Now chemo has ended I feel a bit less secure too xx

[Taran]

Hi netti, I had surgery first so don't have experience of knowing how well chemo worked on the lump. But from speaking to other ladies, I don't think you can know the real response to chemo until after the lump has been removed and analysed. Some ladies have had their lump shrink, but when it's been examined after removal there were no living cancer cells and so they still had a pcr. MRI can't show what is going on at cell level, so there is still hope yet so try not to worry too much until you get the path report back xx

[netti37]

I need honest advice please.... Had my MRI results. The tumor has shrunk by half. It was 20mm and bcn told me its now approx 10mm. I'm so worried that I didn't get a complete response. Being tn just makes it worse. Anyone else not had pcr after 6 months of gruelling chemo. What are my chances now. I feel like I've gone back to square one 😢 positives are that it has shrunk and my nodes have gone back to normal size! Xx

[1852]

Suzanne you will be at that wedding ! Good news marina X hi pam good to hear from you and to hear you ok

we both seem to be still having to go to appointments don't we I am going to see orthopaedic consultant regarding frozen shoulder it is not improving  but I know they take a long time . We have had some good news 

we are to become grandparents again next year that will make 5 altogether so I have got to keep well take care all DEN

[Whitfield]

Great news Marina.  Work will be easy after what you've just been through.  Px

[Marina]

Glad to hear from you Pam.

I had great news fron PET scan. Am cancer free (if you remember I had reoccurence during chemo).
Have fecided not to do radiotherapy so back to work soon ... dreading it!!

[Whitfield]

Hello everyone,

sorry to not have posted.  For some reason I've not been receiving notifications of post so thought you had all gone quite.

you will be pleased to know I'm doing okayish.  I have the ear problem again and am waiting for appt at the London ENT hospital.  Referrals went missing so it's been a long wait and I still don't have a date.  I have this week found lumps in both breasts but hospital are asking me to wait until next week then report again if they're  still there.  I think the hospital is fed up with me.  I'm still going to the pain clinic for underarm pain and they've given me strips to where.  But reading the paperwork which comes with it it says know risks are these strips are know to cause tumours in mice.  So I'm now not using them.  Next appt is 24th Nov.  The swollen breast (lymphodeama) is smaller now and the hospital wan me to go into normal very supportive bras.  These are the forth type I've had to. It so spent a fortune.  First lot were for just after surgery, then I got those ASDA ones, then more supportive were needed so had to buy M&S sports bras which hospital said were good.  Then saw the hospital again and they said no you need normal brads with large straps and full support as it's important to keep breast apart for drainage.  So more bras broke.  So pretty much broke spending so much on this desease what with also. Wing made redundant last Dec.  

Went to see specslist re lady garden problem.  Good news vulva not showing any signs of cancer but shrinkage due to menopause.  The hospital gave some hormone cream but I reall my GP saying no to this due to cancer.  So only using this when in crisis.  Itching much better and swelling down but this area now has odeam due to long term swelling.

other than all of the above I'm ok.

one other good news is second year mamo was clear this was in August.

Hopefully I'll get your posts now.

also joined this TNBC FaceBook group.

i did miss you all.

pam x

[suzanne2]

Thank you Marina I hope to god. Has Pam been ok? Xxx

[Marina]

Oh Suzanne2 don´t say that, you are doing fine and will be able to celebrate next June I am sure.  I am at least hoping to have more hair by then!!!

Tomorrow I see onc for PET scan results, a little nervous.

Still no news from Pam, I may send her a private message.

Keep positive!!

Marina

[suzanne2]

Well ladies I went shopping today and bought my outfit for my sons wedding which is in June, now I'm feeling deflated and thinking what if I've tempted fate, scared!!
Hope u are all well xx

[1852]

I must be doing something wrong can't get to read anything only who is speaking and what DEN

[1852]

Thanks marina hope you ok best wishes to all xDEN

[Marina]

I just can't get the link to upload here so I suggest putting this on google search and it will come up:

the truth about cancer live symposium

[Marina]

Earlier today I posted about a live stream on this w/e from the wesite The Truth About Cancer and now I see it wasn't uploaded. I think because I included a link so I will try again.
It has all sorts of experts & doctors talking about alternatives life food, supplements etc and I'm sure we can all learn something.
I will try to post the link in another post..

[AnnDaw]

Hi Marina I had my last chemo on 1st April so have had more hair growing time than you. I had my 1st cut 3 weeks ago and it's a couple of inches all over but I still can't get brave enough to go out without a wig. I think I want to see a bit more length on the fringe area then I'll be okay with it. We go on hols on 29th October so hoping to be hair ready for then. Thanks for getting the forum going a bit more Marina. I've also been wondering where you have been as well Pam. Xxx 

[AnnDaw]

Hi Colista what amount of turmeric do you add to juices and what food do you put it in or on. I know we put it in curries etc but does it taste very strong on English food. I believe it also needs to be taken with black pepper for absorption by the body. Sometimes you don't know what to do for the best there's so much info out there. I also take omega 3 as im not over fond of fish on a regular basis. I take vitamin D3 as it's made from plants whereas D is artificially made or so I've read. Have you got anymore good info on things that you would like to share please? Xxx 

[Marina]

Glad to see some action here again!
AnnDaw I finished chemo in June but had to be operated again (lumpectomy) as had reoccurence in same place under arm. They thought they were cysts so didn't take margins. Then found one was cancer - TN again - so had another op for clear margins. Have decided against having rads. Now waiting for PET scan results. Am well and have changed my diet. Also taking supplements although I didn't know about the tumeric supplent not being effective, thanks Colista.
Pam how are you? You've gone very quiet.
Have about an inch of hair but it just sticks up so have to gel it down.
Best wishes to all
Marina

[Taran]

Thanks Colista, so hard knowing the best way to go about these things isn't it!! Maybe I'll start once rads are finished as that will be a good bit of time since chemo then. Seriously can't wait to be back on the up from this last round. I'm so tired and hate feeling so useless for the kids xx

[Warcol]

Hi Taran
Started the tumeric after surgery as that gave 4 weeks clear of the chemo! I was taking it as a supplement but after watching a tv prog that showed as a supplement there was no difference I decided to put it direct into my juIces and on my food which evidence suggests does make a difference!
Colista xx

[Taran]

Hi Warcol,

When did you start the tumeric? I finished chemo on Tuesday (woohoo!!!) So wondering when to think about starting it. Will be starting rads 1st November. Hope you get on ok next week. I got worked up about the planning appointment but have no idea why because it was completely fine if course!!

AnnDaw I'm glad you are moving on well. Gives us all some hope that we can return to a new normal I'm sure xx

[Warcol]

Hi ladies
I had last chemo 17/7 and surgery 17/8, due to start rads next week! Feel ok but my arms and legs ache..do u have these issues? Juicing a lot as well and started taking vitamin D, omega 3 and sprinkling tumeric on everything lol xx anything to keep it away forever xx

[AnnDaw]

Hi Marina nice to hear from you. I haven't posted on here for ages as everyone seemed to go to Facebook which I don't do full stop. So pleased to hear you are well and I hope everyone else is too. I finished all my treatment in July and am in a clinical trial for aspirin so could be taking 100mg 300 mg or the placibo. I've also had app with my consultant this week to discuss my reconstruction options. I have a appointment with a plastic surgeon on 2nd December. As I had tnbc there's always the worry of it coming back but moving forward well. I'm back at work and feel well. I hope as well that you ladies on Facebook pop on here sometimes. Where are you at with your treatment Marina? Xxx 

[Marina]

Good morning all,

Lets not all just go to Facebook, this forum has been invaluable to me. I feel I have got to know peoples stories, the trhreads have been very positive for me and I have gained so much knowledge and understanding of what I , like the others here, are going through. I confess I have joined the FB group but although interesting it does not have that personal touch I find here.

So ladies please keep up the good work here. In the meantime I am well and get my PET scan results next week when I see my oncologist.

best wishes to all, Marina

[Zhakonya]

Could u add me to tnbc fb group too, Zhaniya Daurenbekova...I have sent friend request in fb. Thank u a lot for you positive posts.

[Warcol]

What's your name Hun?

[KLF007]

Hi Ladies
Can I please have the FB details ? I am newly diagnosed with TNBC. Struggling with this rollercoaster i have landed up on ! I am in Aberdeen, 37 years old and a Mummy to a 6.5 year old girl. I felt a lump, was told it was a Cyst but on USS it showed up to be a Cyst and also a 2cm IDC lurking alongside. They think Stage 1 but Grade 3 so starting Chemo in next week or so. TNBC gets a lot of bad press on the Internet but my docs etc are all so positive that it's treatable and not life threatening. Any help / advice would be greatly appreciated. Thanks so much xx