Any triple negative survivors out there?

[suzanne2]

I live in South Wales, I think u r right about the chemo I was talking to my friend earlier who had chemo 5 years ago n she still has aches and pains, and my age don't help lol. I did private message u did u get it xxx

[Tania786]

Hi Suzzanne, Oh good to hear that all your treatments finished in August. I think it's chemo that make us tired and give us aches and pain. I guess it'll get better with time.

I live in London, SW area. What about you?

[suzanne2]

Hi tania, yes treatment all finished end of August, I wasn't really fit but wasn't unfit either if that makes sense. I've talked to a few people now who actually ache when getting up after sitting down, I got to be honest I don't sit down much anyway especially when I in work.. I'm hoping it will improve. I've just been out walking with the dogs n I feel great when I'm up and about its just initially after getting up. Where do u live tania. Pam I forgot to ask how are u keeping xxxx

[Tania786]

Hi Suzzanne, thanks, i work in an office as a civil servant. I usually work from home two days a week so should be ok.
Before diagnosed I was very fit, always in the gym wtc. I couldn't do any exercise during chemo as I was unwell. I felt like an old woman when out. I still feel tired but it's improving.
I saw a nutrionist at The Haven before starting Radiotherapy and she suggested Kelp, and some other vitamins. I've been taking them for a few weeks now and i think they are helping with energy. I sometimes get a lower back pain.
Have you finished all yoir treatments?

[suzanne2]

I'm fine walking etc it's just if I been sat down for long periods I ache when I get up, but am fine once impugns about, walked 4km yesterday with the dogs, I'm just like a 90 year old starting off lol xxx

[suzanne2]

Now I'm mega scared x

[Whitfield]

Suzanne,  I'm fine and managing to walk 2 to 4 miles a day.  I'm 57 this year and was not very fit before treatment,  if I were you I would mention this to your GP.

pam x

[suzanne2]

Thanks Amanda I think I will try cod liver oil, have u tried that at all? I've started to do regular walks to see if that will help, feeling so anxious lately just scared xxxx

[Amanda10]

Hi Suzanne
I also have had aching joints. I was fit before so not used to feeling like this. I try to go on my exercise bike for thirty mins each day, I know it sound daft but it has actually helped the aches . I also put a couple of hand fulls of Epsom salts in the bath, which I think has been beneficial. They say it helps rid the body of toxins so thought I'd give it a try .
Amanda xx

[suzanne2]

Hello all can I just ask those who are post treatment if u have any trouble with your joints etc, I'm like a woman of 90 if I been sat too long, I'm just so stiff it hurts, x

[suzanne2]

Hi tania so glad u r nearly at the end of your treatment, I found going back to work has helped me, what do u do? I think we all worry about reoccurrence, I also get asked are u ok now, have u had the all clear, n I never know what to say as I don't want to jinx anything, I just say I'm doing okay at the moment, I hate answering. Love sue xxxx

[Tania786]

Hello all, I'm not sure if I have posted anything on this forum before but I've been using the Aug chemo forum.

I was diagnosed with TNBC in July 2015, was 36 yrs old, have got two boys 7 and 12. The Tumour was 3cm, lymph nodes were negative. I had lumpctomy then 6 FEC-T chemo and now having radiotherapy (20 sessions). I only got two more to go and then all done.

I'll be back to work from Feb. I do have this fear of recurrence and there are days when I feel down. I worry about my kids but I'm trying to keep positive and not to think about things. I'm hoping going back to work will keep me busy and distracted. The only thing is sometimes people ask oh when are you going to get the all clear.. Or oh how are you feeling? You look sooo good!!! I just don't know how to answer.

Bel - reading your post is very uplifting! thank you so much for sharing your story.

Best wishes everyonexxxx

[suzanne2]

Hi all, hope you are all keeping well. I'm finding being back in work really helps me although I still have moments of shear panic. I looked after a lovely lady the other day who had tnbc in 2009 she's doing well, xxxxxx

[bel]

Hi jrip,
There will always be both negative and positive stories/outcomes for any illness out there. I'd say try and surround yourself with as many positives as possible - seek these out, even keep a file of them in your email or printed out so you can reference them for days you feel a bit shaky (which by the way are normal - we are only human, and this isn't an easy journey!). I'm one to get you started! Diagnosed 2002, aged only 31, clear ever since 🙂
Good luck
Bel X

[Jrip]

May you remain in remission for ever! You are an inspiration so brave xxxx. Thank you for taking the Tim to reply xxxx

[Jrip]

Thanks Amanda! It's great you're back at work! Sometimes I think I have too much time in my hands and end up trawling through Tnbc groups and getting so sad whenever I hear of a recurrence or metastasis ....xxxxxx

[Amanda10]

Hi jrip
Sorry you have to join us here but you will get lots of support. Glad you not feeling too bad after your treatment . I finished my treatment middle of last year and am back at work three full days a week at the mo. I'm not half as fit as I was before but building it up slowly. Tiff love your positive attitude ... Brilliant xxxx Amanda

[Whitfield]

We are all so brave.  I'm just looking to cut out BPA from all my old Tupperware.  We can just do what we can and hope for the best.

px

[tiff71]

Hi Jrip.
I am glad you are feeling well considering your treatment.
The thing to remember about TN is that although it is more aggressive than other forms of breast cancer it also tends to respond better to treatment. With each year cancer free our chances of recurrence minimise greatly and after 5 years we have as much chance of it reoccurring as someone who has never had breast cancer being diagnosed.
I am stage 4. I have been in remission since April 2015. I don't think about it. I'm lucky to be here. There are still people worse off than myself. What will be will be and I'll tackle that if and when. I can't live worrying about things that have not happened. I find meditation helps.
I wish you all the very best.
Hugs,
Tiffany xx

[Jrip]

Hi ladies!! I am happy to see a thread of tn ladies! I was diagnosed end March 2015 and had neo adjunct chemo, lumpectomy and sentinel node removal and 10 rads...finished end November 2015. So basically I spent most of last year in treatment.  I had my ups and downs, ended up in hospital on taxotere...but did get a PCr result which is supposed to be the best you can get right!?  I am lucky to be feeling quite well physically ...mentally I struggle and seem to still find it hard to accept what's happening whilst at the same time paralyzed with the fear it will come back.  I need your advice on how to move on.....the fact it's triple negative stops me in my tracks.  I'm also very happy to read about the diets you are all on...me too 🙂 I look forward to getting to know you.  Is this an active thread ? 

[Whitfield]

Yes, I was 59 kilos or thereabouts and it was hard going.

pam

[Amanda10]

Hi vic
I was also just under 8 stone when I started treatment . I had 8 cycles altogether not sure of the dosage but it was fec d. I didn't have any reduced and it was hard going . Hope you are starting feel a bit better now xxx

[jinny2611]

Ooh I weigh lot more than that 😜x

[victhewonderkid]

Thank you so much for all your replies. I do understand about the dosage being related to your weight but as I weighed 7 st 12 oz at the start of treatment it does seem excessive. My oncologist has a very good reputation but I agree that I need to get tougher and make sure that I get the answers I need. Once again THANK YOU.

Vx

[Whitfield]

Hi Vicky,

Sorry to hear here again.  Here's my info...

On diagnosis sept 2013 I received 4 EC then 4 Piclataxol but my tumour was 31mm with known node involvement.  I was given this first to try to shrink tumour to allow lumpectomy.  I had a total medical response to the 8 chemos which meant the lump disappeared and nodes deceased turned to a glass like substance. I then had surgery With full  node clearance followed by 20 rads.  I know they measure the chemo against body weight so for heavier people the dose is higher.  I know this because chemo I lost weight during and they said they might need to reduce dosage.

I hope this info helps and good luck with your treatment and remember that you can ask for a second opinion or transfer to another hospital if your not sure your getting the treatment you feel you need.

You also need to ask for an ultrasound to see how well the tumours are responding to the treatment.  Then you can make a better judgement as they can change drugs if there is not much reduction.

wishing yiu well

Pam  x

[Sue123]

Hi Vicky, I was diagnosed and treated for stage 1 tnbc 2 years ago with Epirubicin and CMF. I cannot answer your question directy but it is clear that your oncologist is not too reliable and that you have lost confidence in the decision making. I would definitely ask for a second opinion. This tnbc is a sneaky bugger. I would do my research on oncologists who have an interest in tnbc. You are entitled to a second opinion and most doctors will accept this. Don't worry about hurting his feelings or anything, this is YOUR LIFE!

Hope all goes well, Sue x

[Marina]

Hi Vicky,
I found 25mm lump quite high near armpit. Had lumpectomy and 3 clear nodes removed. Am going through 4 x EC followed by 4 x T. Then 22 rads.
Sorry can't really comment on your situation.
Good luck and hope maybe someone else can shed some light
Marina

[jinny2611]

I had FEC T 6 cycles but I did have lot of positive nodes x

[jinny2611]

Hi most people get lower dose if it weekly mine was 195mg dose every 3 weeks it also depends on your weight to how much you can tolerate so lots of ladies get smaller dose if it weekly or other health conditions they give you as much they think you can tolerate hope this helps x

[victhewonderkid]

Hi, I'm new to this forum & I hope you don't mind me barging into your thread. I could really do with some advice regarding my personal situation.

I was first diagnosed with tnbc Nov 2012 when I found a lump in my right boob. The lump consisted of 10mm of idc surrounded by dcis making the whole mass 20mm. I had WLE & sentinal node biopsy (no node involvement). I had six cycles of EC chemo followed by 25 rads.

I did question why I was not given a taxane based chemo but can't even remember the reply I got.

Over the next couple of years I had various scans as I continued to find lumps in my right breast which always turned out to be cysts.

In June 2015 I saw my oncologist for a routine appointment & mentioned that there seemed to be a lump on my scar. I also mentioned that I had lost over a stone in weight in the last 6 months for no apparent reason. To cut a long story short I was found to have two new cancers in my right breast (17mm & 12mm), both tnbc 

. I was told that they would perform another WLE which they did in October.

When I saw my oncologist he told me that he wanted to get some advice from another colleague before making a decision about further treatment but implied that he didn't necessarily feel that chemo would help. He rang me some days later and told me he hadn't managed to speak to his colleague & we had a chat about chemo possibilities. I told him that I would not be happy if they did not give me some kind of treatment as last time I'd had everything and it still came back. Eventually we agreed that I would have 4 x cycles of Docetaxel and depending on how I tollerated it would determine if I went on to have 2 further cycles.

I've now completed the 4 cycles and it has nearly killed me. I have questioned why I was given 156mg doses and was not convinced by the answer. The usual dosage appears to be 75 to 100 mg and that can be reduced if the side effects are severe.

I'm seeing my oncologist in 10 days and I will be refusing any more chemo. My main questions are

1. Has anyone ever had a local recurrence and not been offered a mastectomy?

2. Has anyone had Docetaxel and been given 156 mg dose?

3. Did anyone have EC for their initial tnbc?

Sorry this has turned into an essay

Vicky

[Whitfield]

We all have our own paths and not one way is known to be better than other so go with what feels right for you and eat well, fresh organic if you can, exercise and remember the doctors are trying g to save us.

Chemo gave me a total pathological response which I wouldn't have had if I didn't do the eight chemos 4 EC and 4 Taxol.  I know it's hard and the side effects are horrid and I nearly gave up on number  7  but the hospital were cute in sending in a professor to chat with me to get me to do the last two.  They wouldn't do this if they thought it was not necessary.  This is just my story and we all have to make our own decisions.  

I had had the tingling plus lots of other SE but a year gone and that feeling has gone and I feel almost as good as I did before chemo.  Just coping with rad effects and surgery effect now.

there is hope.

Pam x

[Marina]

Thank you so much Tiffany. I went yesterday convinced I was going to say no and pull out but then just gave in, was't strong enouh. Of course loads of family pressure as nobody has done all the research I have done. Obviouly mine is a different situation to yours as mine was a lump and removed with clear margins. Will let you know how I get on.
Thanks again, Marina

[tiff71]

Hi Marina. Oncologists won't be helpful in recommending or helping with diet / alternative therapies etc. I read it is actually against the law to recommend anything but chemotherapy and radiation. It's not in the medical professions interest as cancer is a billion dollar industry. Do your own research, eat loads of healthy foods and veges, take your vitamins and supplements, exercise and use your intuition to do what you feel is right for you. Don't let them put you off changes and asking questions. I even changed oncologists. This is your life and your right. I have chronic joint pain - shocking. My supplements help. xx

[tiff71]

Hi AnnDaw, you need a Masticating Cold Press juicer . I have a Champion brand which is just anazing and super easy to clean and reassemble.
Tiffany x

[AnnDaw]

Hi Pam I had 3rd FEC on Wednesday so halfway through 3 T to go then 15 rads over 3 weeks. Side effects just a bit tired so far. I do fruit smoothies with hand blender but need to get a juicer for veggies what brand juicer do you use as there's so many to choose from. I know I need 1 that separates the pulp and that is easy to clean a couple I've seen are round about 100 pounds does that sound about right. How is your shoulder bye the way. Xx.

[Marina]

Hi ladies, today after huge dilemma had my second EC chemo. So worried about long term side effects as ONC was not much help, didn't even agree with changing diet, juicing etc. Told her my hip hurt alot and she was surprised. Sending me for bone scan but I honestly just think it is a side effect. Also have constant tingling disconfort on the soles of feet and she also said shouldn't happen with my EC dose.
I had lumpectomy with 3 clear nodes and really feel I am damaging my immune system more with this. Chemo reduces cancer it doesn't kill stem cells.
Sorry to be so negative, just dreading these next 10 days.
Marina

[suzanne2]

Hi pam hi ladies, I just seen that too on the news, I'm not a big drinker but I do enjoy the odd glass of wine. I'm doing ok but am so scared for my mammogram as its due in Feb, just so worried about it, hope u are all ok xxxx

[Whitfield]

Hope everyone is okay.  Just seen the news and picked up in the non drinking.  I didn't drink much befiore getting cancer, maybe three drinks a year but now will not have any.  Can't take risks.

been juicing and eating a lot of veg.

Whats happening with you guys?

pam x

[Amanda10]

Thanks for the info Tiffany . Will have a look at the recipe sounds yummy xx

[tiff71]

To all the ladies craving sweet treats but still wanting to be healthy try this recipe. All natural / organic with no refined sugar. SUPER yummy!!! 😊
Organicsisters.com.au - Raw Caramel Slice
Love and hugs to you all
Tiffany x

[tiff71]

Amanda, I take large quantities of fish oil ( 6/day), high dose Curcumin (the active ingredient in tumeric - 4/day - need one with pepper for absorption into the system). Both these are powerful anti-inflammatory. Curcumin has very strong evidence of anti-cancer properties, google it. I have chronic joint pain still as residual side effects from my chemo and these help tremendously. I also take high dose vitamin c daily - more than recommended dose, and 6 x vitamin D (one because I tend towards deficiencies and secondly because very important for us). I also take a good multivitamin, a vitamin B12 spray and Iodine drops. My prognosis was bad so I just decided to go all out. My oncologist /s were extremely unhelpful whenever I asked about vitamins or supplements ( one even laughed and rolled her eyes at me - really?? This is my life you're laughing about!! - so I did all my own research. Curcumin has no adverse effects at all and doesn't affect any meds etc so quite safe. You must tell your Oncologist before taking anything especially if you are currently undergoing treatment. Vitamin C apparently can effect certain treatments.
I hope all goes well for you,
Tiffany x

[tiff71]

Har21 hi ☺
I have had three surgeries - a failed lumpectomy and a double mastectomy. I took some loose, comfy pajama bottoms and a loose button up shirt for the hospital although I found it easier to just leave the hospital gown on. Take a wrap if you have one for your shoulders if you are chilly, otherwise something light. Coming home normal trousers or skirt and something button up for the top. After the surgery I felt quite self-conscious when I was leaving. I was flat as a pancake and surprised at how noticable it was. I had my breasts removed on different occasions - one prior to my chemo and the other after - and I was very large so it looked even more noticable being lopsided at first. I popped a cardigan on as I was leaving and found this camouflaged it more. You'll be sore so anything loose and button front is good. I used bio oil when my dressings came off on the scars.
All the best
Tiffany x

[jinny2611]

I'm trying to put some goodness into my diet but still like my treats which I have often. But I do have smoothies every morning kale soinach ginger blueberries and also take vitamin D3 and biotin because my eyelashes keep falling out every few months I was stage 3 with 9 positve nodes and 2 tumours I was digonsed end of April 2014 x

[Harj21]

Hi,

I also opted for chemo first . My tumour was the size of yours at the start of chemo and now is a quarter of its original size and am waiting for my surgery in February. 

I note from the threads that you are now eating more healthier.  I have just begun to take linseed oil but what other changes have you made? Prior to diagnosis I ate a healthy  diet but have to admit I did like sugar and exercised regularly. 

I also have another really silly question I note you have had surgery. What did you take to hospital in terms of clothing etc.

Thanks 

H 

[Amanda10]

Hi ladies hope you are all doing well. I was just wondering what suppliments if any you are taking ? Im taking turmeric and b12 . The hospital didn't give me any advice but have read these are thought to be beneficial.
I'm thinking also I might get a probiotic as my stomach still gets queasy since the chemo. I also read that cleansing the liver with Epsom salts once a month is good . I don't know if any of this is of any benefit but we try and do everything we can don't we. I've been juicing since being diagnosed using veg such as kale spinach etc and drinking carrot juice on the days I don't juice.
X Amanda

[Whitfield]

Been eating broccoli since diagnosised and almost daily.  We must remember that we also have to enjoy life.

pam x

[tiff71]

Suzanne look online at some Indian dishes. Many are vegetarian or vegan, chicken if you wish and are very healthy with lots of vegetables. The spices they use are bc fighters also - use termeric or better still curcumin. One of the simplest and best cancer fighters (proven) is broccoli. I have a bowl lightly steamed every day. Good luck x

[suzanne2]

Thank u sounds fab n I love omelette xx