I was diagnosed a month or so ago, at 39yo, with TNBC. I've had a lumpectomy and axillary dissection - tumor was 2.5cm and 3/29 nodes. I will start chemotherapy in the next 2-3 weeks. I have been looking at various support groups but seem to be finding it hard to find a place to call 'home'. I hope this will be that place? I was so happy to find a site where other women have a very similar diagnosis to me. I will keep reading all the great advice I'm finding here. Being a mum to 3 littlies (2yo, 5yo and 7yo) I have to do whatever I can to keep this beast at bay and go on to live a long life. 

Sandra

xo

Pay attention to what your body tells you. Rest and eating right helps. Hang in there!

Renee

Xoxo

Welcome to a club no one wished you to join. However, there are many resources and loving hands here to listen to you vent, answer your questions and just know how you feel!  Hope it is helpful. Best of luck in your treatments!

Welcome and I hope you find this community full of support.  We understand what you are going through and will help you on your journey.  Please feel free to ask questions or just vent, because we get it.

Donna

I am really tired of reading all the *horror* stories associated with TNBC. But that's the internet for you. There will always be doom and gloom. My doctors aren't at all worried about the TN diagnosis - just me! Think that's my own fault though, for getting too worked up about what "Dr Google" says. I am interested in finding out what other women did re exercise and diet. I am pretty healthy, exercise every day, don't drink or smoke, eat a balanced diet... so not sure what else I can do in that respect... but I'm happy to take on board any tips, advice etc.

Guess just have to hang in there, like you all say.

Thanks again,

Sandra

xxoo

My wife was diagnosed earlier this year, and have found much helpful information and acceptance here. I wish you both all the best.

I believe you will find the people here helpful.

Wade

 

Welcome and so sorry you have to join us. 

 

Have you been tested for the BRCA 1 or 2 mutations?  I think this is standard protocol based on your age and being TNBC.  If you haven't been tested, please try to use a certified genetics counselor - most larger hospitals/medical centers have them on staff - they are the experts and can answer a lot of questions for you now and in the future.

 

Just take one day at a time - it's overwhelming when you first get started.  We're all here to answer questions that you may have. 

 

Ann

No I haven't been tested yet. I'm not sure if it is a standard procedure to test here in Australia? I'll ask my doctor at my next appointment. I need to know - for the sake of my sister and daughter. There is no history of cancer in the family. Both my paternal and maternal grandparents lived into their 90s and my parents are in great health. This has come out of nowhere.

Sandra

xo

Good advice Janet, will definitely cut back on the sugar. Does that include natural sugars too? I am a bit of a fruit addict.

I was reading about women who had neoadjuvant chemotherapy and seemed to do very well. This was suggested to me by the BS but the team of oncologists looking after me really wanted me to do surgery first. And the BS admitted she was happy to go either way. Now I am feeling nervous about the choice I made to do surgery first... I hope it was the right one :-/

Sandra

xo

What type of chemo will you be getting?  I attended a Cancer Transitions program recently and they recommended an anti-inflammatory diet (think Mediterranean diet).  

http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html - http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html

http://www.anticancerbook.com/steps.html - http://www.anticancerbook.com/steps.html

http://www.anticancerbook.com/ - http://www.anticancerbook.com/

not sure yet. At the hospital I am attending they have a team meeting every Tuesday to discuss each patient and work out the next step, so when I go in for my next appointment (Tues week) I'll find out then. My breast care nurse  did say she thinks there will be a taxane. And now I admit I feel a bit silly for not really knowing what drugs are out there and what I will be given. 

Thanks for the links. Never heard of an anti-inflammatory diet. Will definitely look into it.

Sandra

xo

 

Maggie

Denise posted this study on another thread.  You might want to print it out and talk to your doctor's about the study.  Don't feel bad about not knowing the chemo drugs.  I never heard of most of them when I was diagnosed.  I never realized there were so many different types.

http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page1.html - http://forum.tnbcfoundation.org/attention-newbies-important-new-chemo-study_topic7771_page1.html

First appointment with the medical oncologist next week. Is it weird to be looking forward to chemo?! 'Cause I am!

Sandra

x

thanks so much for that. I drink a lot of water anyway, at least 2 litres a day, so keeping up my fluids shouldn't be too hard. And I really hope I can keep up with the exercise - I have 2 Siberian Huskies that need their daily 5km walk! Maybe 5km a day during treatment might be pushing it... but maybe I can get out for short walks. It's coming into summer here in Melbourne, Australia :-)

My appointment is next Tuesday. And I have been feeling in limbo. I have finished with the surgical side and am now waiting for the chemo side of things, so at the moment I'm just 'waiting'. I am armed with info, thanks to this site, to take to the appointment with the MO next week. You guys are so insightful and helpful. I thank you.

Sandra

x

I was diagnosed with triple neg after my mastectomy on 19th Sept. 2011. Upto that point I had been told it was not breast cancer but a neuro-endocrine tumour! So everything changed when they finally got the 'alien' under the microscope. As I tried to explain to my nine year old son - it was like they had a blue piece of jigsaw when they took the core biopsy and the surgeon said it was part of the sky but when they finished the jigsaw they realised it was a blue cat!!! 6.5 cm with 27 nodes rmoved - 2 enlarged but none malignant.

 

Now they know what it is I am to have 6 cycles of FEC and then 3 weks of radiotherapy. I had my first one on the 25th just after a week's holiday in Spain topping up my vitamin D. The oncolgist is so much easier to understand than the surgeon (who was great with a scapel but not with the subtleties of the English language being Danish!) After being sick on the bus going home and two days with what felt like morning sickness I have felt fine and went back to school last week where it was great to get on with the day job. My Mum has bought me a new swimming costume and a swim boob as an early birthday present and I can't wait to use them but I've just been hit with a very heavy period and so am feeling very sorry for myself - not the cancer, not the chemo just the time of the month blues - typical!!

 

My children (daughter 12 and son 9) have been great but my husband is finding it very hard. His parents both died of cancer when he was a teenager and he can't work out whether to overplay the attention or underplay the attention. He's very disturbed by it all and that makes it hard for all of us.

I think its been like having a baby in reverse. First the operation and dealing with the scar is like having a newborn- you panic about everything whilst the breast nurse smiles and says its all fine. Then you have the morning sickness and you have to deal wih the food cravings that come with trying to deal with it! The way i see it is I taught through two pregnancies so I can do this too! I've started to wear silly hats to school before my hair falls out so the kids get used to it before I have to. I couldn't cope with a wig it would be to hot and I can imagine the uproar if I removed it to scratch my head!

 

Its just so great to find a site for people like me. One's where we just get on with it rather than get bogged down with te enormity of the occurance.

Mandy 

 

thanks for sharing your story. I like the part about it being like a baby in reverse... because I loved being pregnant!! OK, so maybe this won't be as 'lovely', but I am hoping I will cope well with the side effects. I guess I just have to wait and see. Appointment with the oncologist tomorrow, so I am nervous but at the same time happy to be getting on with the next stage of my treatment. 

How are your kids coping? My 7yo is worried about my hair falling out... even though we keep trying to make light of it and make up funny stories about my 2yo pulling my wig off while we're out shopping etc. I think the anticipation of it happening is going to be worse than the actual event. I loved the comment about taking your wig off to scratch your head, couldn't stop laughing!

My husband seems to have adopted the same attitude as yours... his dad died of bowel cancer 4 years ago. At the moment he is going through the 'it will be OK' stage. Men, well the men I know at least, seem to have trouble dealing with the emotional side of a cancer diagnosis.\

Sandra

I'm not sure what chemo I'll be getting, find out tomorrow. I am anxious about it. I just want to get started on it! 

Love the funny hats ideas... I am so getting a Santa hat this year. I haven't bought a wig yet, not even sure I will. It is coming into summer here in Melbourne, Australia and our summers are roasting. I think I'll stick to caps and scarves for now. Maybe a wig later. I'm not particularly attached to my hair... I change it so often anyway. It's hair. It will grow back 

But, having said that, the thought of losing eyelashes freaks me out a little... all the dust and junk will get into my eyes! Have any of you used false lashes?

I just got back from the appointment and I think it went well. I was really happy to hear the lump was taken out with clear margins, there was no lymphovascular invasion and it the wounds have healed beautifully.

The MO recommended FEC x 3 followed by Taxol x 3. 

So I am off to do some reading about this combination and decide if I should go for a second opinion - but obviously I can't wait too long, it has been 4 weeks since surgery. MO said she likes to wait 6 weeks before starting chemotherapy.

Great quote Judy 

I will email my MO and ask her to look at the study, it is interesting. It seems like quite a big difference in outcomes. If it is a matter of switching the order of drugs, I can't see why she would have a problem with it. I will definitely follow it up.

I was very happy with the clear scans. Such a scary time waiting for results. But it's done now and time to clean up any rogue cells. 

I've been referred for genetic testing. There is no family history of cancer in any side - just my cousin who was diagnosed 3 years ago at 37, with BC. But the doctors seem to think it is important I see a genetic counsellor and go from there. 

Thanks for all the info Judy, it has been really encouraging.

Sandra

thanks for the info and I think I am starting to get confused! I really appreciate and love all the information, but have to admit I do feel a little overwhelmed by it all. But please, by all means, keep it coming. I need to be informed about this disease. I've noticed that here in Australia there is a different approach re drugs and order of treatment. I asked the MO the other day what the advantages of neoadjuvant chemo was - because I had a lumpectomy and axillary clearance first. She said the consensus was to do surgery first because right now, my tumor was operable. She said if it is operable the consensus is to take it out. Why risk it growing? As she said, if we leave it there and find a particular chemo combination doesn't work, we potentially miss the opportunity to remove it. That did make sense to me. So I have to be confident and comfortable with the choices I have made thus far.

I did ask about dose dense, but she said it wasn't necessary. I might try and find some info about dose dense cycles on this particular combination and run it by her again. I am scheduled to do them every 3 weeks at this stage. 

I am all ready to start. Walked 7km's with my dogs today, did some gardening, went to the park with the kids, soaked up some sun... was a good way to spend the day and I'm feeling really well.

Thanks again for all your info and help, Judy.

Sandra

xo

I asked about dose dense, but again she didn't seem to think it was necessary? 

It is definitely interesting to read about these studies and I will mention them to my MO, but at the same time, I also need to trust her judgement and believe she will give the best treatment for my situation. She is, after all, the one with all the clinical training! And I didn't perceive you to be questioning my decisions or treatment. I thought you were trying to be helpful and provide some guidance. You have been where I am set to go and I can only learn from yours and others experiences. 

I try to be healthy. Shame BC is no respecter of healthy choices and lifestyle. But such is life and I am confident I can get through this. 

Sandra

xo

The other problem Ihave had the last two days is I just want to cry constantly and this comes on anytime anyone asks how I am but they keep doing it!!! I suppose its the underlying knowledge that despite the fact that I feel so well I will have to subject myself to that feeling rotten all over again on Wednesday afternoon but I providing that I pass the blood test - which seems harder than any mental examination I have ever put myself through as its completely unknown and no matter how much you take care of yourself you have no way of knowing if it is actually doing any good!

I suppose its being robbed of all personal autonomy that I am finding so hard. You are completely dependant on the recommendations of others and you have no certainty that they are getting it right as its all down to statistics and guesswork. Meanwhile life goes on as normal with highland dancing exams and football injuries and two kids fightring over the wii remote

I completely agree with the feeling so well and subjecting ourselves to this treatment. It still boggles my mind that something so small, a 2cm lump, could be so deadly as to require such drastic and toxic action. But that's the nature of the disease, isn't it?

And I too am struggling with that loss of autonomy. Our lives, literally, depend on the decisions and judgments of others. How to manage that when we are so used to being the director of our lives? It is definitely frightening to be so reliant on a group of people we barely know, but I have to take comfort in the knowledge that this is bread and butter for them. Although we have a less common variant of the disease, we're not re-inventing breast cancer. 

Ahhh, highland dancing. I remember watching my cousin practice when we were young. My dad was born in Glasgow, moved here to Australia with his family when he was 3yo. I've been there a few times, it's a beautiful place.

The first chemo nurse I saw tried everything to put me off the cold cap even down to suggesting I might getMETs in my scalp but when I asked her the likelihood of that she said she didn't know. My sister works in a path lab in the sunny south of England and she said her consultants had never heard of that one so I think its more to do with the time and effort involved. I have to wear itfor 30 minutes before and then during and 70 mins after. I didn't find it too cold but so far so good, the hair is still here so I'll give it another go this week.

My lump was 6.5 cm when they got it out but as I had such large boobs it remained safely hidden unless I lay down! I had been swimming every day since February when I was told my 4 months of constantly recurring chest infections were due to a depressed immune system and I set out to improve it. Ironic that I have never felt so fit. So as I am paying for the whole 5 star hotel gym experience I have forced myself to go to the land based option but I hate it and canonly keep myself on the trewadmill if the tv programme is worth watching! However the great outdoors is challenging in a Scottish winter so I better put my new swimming costume away and get thetrainers out again

!!

 

Were you able to have the tumor removed without getting a mastectomy? I had a lumpectomy and had to go back for a re-excision because the margins weren't clear. The re-excision was very quick.. maybe 15 minutes, if that. The axillary clearance was more painful. But even then, it wasn't as tough as I'd been expecting. It is coming up to 5 weeks post surgery and I am completely recovered. No pain, no swelling, full movement of my arm. What a relief it is done.

Mets in your scalp? That's a new one! Can't say I've heard of scalp mets before. 

How old are your kids? Mine are 2yo, 5yo and 7yo. Life is pretty hectic 

 

I was diagnosed with TNBC , invasive ductal carcinoma, grade 3, stage 1, plus DCIS, grade 3.  I was diagnosed in August, just had double mastectomies with reconstruction using alloderm and implants Oct 20th, 2011.  Today I went and seen the Oncologist and will be starting Chemo, FEC withn the next week or so.   Has anyone with TNBC ever refused CHEMO based on what percentage you are for risk of recurrence over 10 years.  Mine is at 17%.  With chemo the percentage of it coming back drops down to about 9. 

 

This is not my first cancer.  I had a resection of my bowel 6 years ago October 25, 2005 for carcinoid tumour.  I still see an Oncologist for that one even though I have not had a recurrence.

 

I also have MS, but am very mobile.

 

I wish all you ladies out there the best of luck in your journey.  Hugs to you all!

 

Rondee

I was given the statistics on recurrence/survival based on chemo vs. no chemo and I can't think of what they were off the top of my head, but let's just say I had a less that 50% chance of being here in 10 years without chemo. It was a no brainer for me. I'm getting FEC100 x 3 and Taxotere x 3. I worry if it is the 'right' combination of drugs, but I just have to trust my doctors. 

We will probably be starting chemo at the same time.. assuming you're going ahead? Did you have chemo for the bowel cancer?

Sandra

Unfortunately, chemo is our only adjuvant therapy for TNBC.  What is unknown is if any cells escaped through the lymph or vascular system and chemo is used to treat systemically in hopes of preventing a recurrence.  Percentages are just that, they can't tell us who will have a recurrence and who will not.  I was given similar percentages when diagnosed in 2009.  Without chemo, I was told there was a 25% chance of recurrence.  With chemo, 13% chance.  Even with chemo, I had a recurrence.  I always say that TNBC is tricky and doesn't play by the rules.   Wishing you the best whatever you decide.  

Donna

 

Sorry to hear that you have to have breast cancer and chemo.  Are you triple Negative, what stage and grade?

 

We will be going through with Chemo at the same time!  I saw my surgeon yesterday and he encouraged me to go through with it.  So I am?  I think I just had a fleeting moment of insanity that maybe just maybe I didn't have to go through with it!

 

Are you having the chemo every 3 weeks?  I think I may have to have a port a cath put in as my veins are not happy right now from all the previous needle pokes.

 

Are you having a MUGA scan done.  I will doing that on Monday to determine if my left ventricle of heart is strong enough for the cocktail of chemo.  I think I am only getting the FEC x 6.

 

I did not have Chemo for the Neuro Endocrine (carcinoid tumour) of my bowel as Chemo is not effective with this rare form of Cancer.  i do, however get an IM injection once a month of Octreotide.  I just started that about 6 months ago because I started having flushing and wheezing which is associated with Carcinoid Syndrome even though I have no clinical proof that I have a recurrence of a carcinoid tumour.

 

Keep in touch as I would like to know how you are doing with your chemo?

 

Rondee

 

I will be going through with the Chemo!  Saw my surgeon yesterday and he encouraged me to go through with it as he said the exact same thing you did, that TNBC is tricky and if chemo is our only option, then we should go for it.  I do have local lymph involvement in the breast.  Regardless of having a double mastectomy, I realize that some of those cells have already escaped into other places.

 

I am so sorry you have had a recurrence!  Where is the recurrence and are you getting surgery or chemo for that?

 

As with my bowel cancer, I had 2 lymphnodes involved, but so far nothing has shown up on scans even though I exhibit signs of carcinoid syndrome, flushing and wheezing.  Being that Carcinoid is a rare and slow growing cancer, it can take a long time to show up on scans and then even then, sometimes the tumour is there but doesn't show up on a scan. 

 

Cancer is such a evil sneaky beast!

 

Take care Donna and I wish you all the best! My thoughts and prayers are with you!

 

Rondee

 

I am happy to have found this site and be able to communicate with other TNBC ladies.

 

Kindly

Rondee

I'm glad you've settled on a treatment plan.  With having lymph node involvement, will you also have radiation?

I had my recurrence in an internal mammary lymph node (the nodes under the chest wall).   http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp - http://www.breastcancer.org/pictures/breast_anatomy/axillary_lymph_nodes.jsp   This was a year ago.  Surgery wasn't recommended due to the location of the node.  Since then, I've gone through chemo again and radiation.  So far, I'm still NED and hoping it stays that way.

Wishing you the best and keep us posted on how you do with chemo.  Remember we're all here for you and will help you on this journey.  Ask questions, vent or just share your feelings.  You're part of this family now.

Donna

It took a while to remember where this site was. My children are 12 and 9 which means my daughter started high school just as tis happened! We've just been to parents evening and she seems to be coping well with all the chaos in her life.

 

Just had the second of 6 FEC 100 last Wednesday. Saw the other oncologist on the Tuesday and my blood results were all better than before the 1st treatment began so my diet of corned beef, haggis, spinach and baked beans obviously counteracted the period from hell I experienced the week before! Unfortunately she changed my anti sickness tablets which resulted in muchmore sickness so I had to have 2 days off work in order to recover. I'm now back to morning sickness and eat Ritz crackers in class if it gets too bad.

 

My 6.5cm tumour was removed with a no holes barred complete mastectomy and axillary clearance with 27 nodes removed - all clear but two enlarged. Luckily I'm left handed because I've had seroma issues on my right chest wall and laterly under my arm pit. I had it drained again just before Chemo 2 so can move my arm freely again.

 

The hair is thinning but I've still got loads to go and the kids at school are now used to me wearing hats so nobody knows what is or isn't under them.

After the FEC I get a three week break then Radiotherapy every day for three weeks. Roll on Easter

I am having my first dose of FEC today... wish me luck!

Rondee, have you settled on a plan for your chemo yet?

I had the port inserted yesterday and what an unpleasant experience that was. But it is done now and time to move on to the next step. 

Hope everyone is well,

Sandra

x

Mandy

treatment was fine. No problems at all. But I was given 4 different types of nausea meds. I always drink at least 2 litres of water a day, so getting through that was no problem and as soon as I got home I took my dogs on their daily 5km walk.  So I guess the exercise and fluids made a big difference for me. I know I might not get off so easily next time, but I am certainly encouraged by the minimal side effects of this time.

Sandra

xo

Glad all went well for you yesterday. fingers crossed and best of luck with it all. one thing i found helpful if the tummy was feeling a little of was weak ginger cordial, and also hot lemon and honey drinks in place of my morning coffee's, and sometimes i'd put a little ginger in that as well.

 

Reading through your posts we have a lot in common with regards how this thing has presented.

Will keep in touch.

This is a wonderful site full of beatiful people i haven't been able to find anything with as much info or anything that even comes close.

 

cheers and best wishes

Glad it went well and you weren't sick. I must admit that feeling faded over the weekend and this week has been great. I've been at school everyday and although once I've done the cubs, keyboarding, gymnastics etc. taxi service at  night I've been fit for not much more than soaps and bed its been good to forget about the past and the future and concentrate on the present! I even managed my first bit of Christmas shopping and 30 minutes on the damned treadmill today - probably not as much fun as a dog walk but SCotland's weather is wet and windy just now.

Enjoy the nect two weeks!!

Mandy

Brrr... wild, windy Scottish weather! We had some wild and woolly weather ourselves last night. Tried to take the family to a Christmas festival to see the fireworks etc, but it got rained out and was cancelled. Master 7 was very disappointed.

Great news you were able to get to work every day. Well done! 

When did your hair start to fall out?? I've got all my scarves and hats ready and waiting to go. I'm actually quite looking forward to wearing them, lol, is that weird? The thought of having no hair during a sweltering summer sounds quite... liberating 

Sandra

x

Week 3 is upon me! I'm in a permanent hot flush and teach under a fan- in December in Scotland! A friend of a friend crocheted a couple of cotton hats for me which I wear to school so nobody can see what hair is left but so far it falls ot in the comb but rarely elsewhere so I still look fine. I have to cover my head in wind however because  my hair hurts when its blown about!

My biggest issue however is yet another heavy period which has not abated so I'm worried my red blood count will be too low an all my Christmas plans will be out of the window. Its like sitting an exam withno preparation- not good for a teacher!

Hope you and the family are well and gearing p for Christmas - is it a barbie on the beach or is that a Sydney stereotype?

Take Care

Mandy

a permanent hot flush? How uncomfortable. Is this a new side effect? I'm still sailing along. Chemo is so idiosyncratic - some people seem to be completely knocked around and others (like me) cruise through. Apart from a few early nights, it really hasn't altered my routine at all. 

We'll be stoking up the barbie, but not at the beach   If the weather is good we'll hit the beach in the afternoon - the kids love their buckets and spades. It's one present that never goes out of fashion. Are you having lunch at home? We were going to, but my folks offered to have it at theirs, so it will be an easy day for me - yay.

When do you go for your next cycle? It's Dec 16 for me, but I have to see the oncologist on Friday to check my bloods and discuss how I'm going. And I have an appointment with the radiation oncologist on Thursday, so I'm keen to see what she recommends. 

Be well. 

Sandra

Don't know how positive or knowledgeable I am Judy, but thanks for the vote of confidence! I have been sailing through this, I really have. I don't think I missed a day of exercise yet. I've been adding fresh ginger to my daily apply and celery juice and I think that has settled the stomach. I've been having some early nights and making sure I meditate for 20 minutes or so in the evening. I think it is important to let go of the stress of the day. It is now 10 days post cycle 1 and I honestly don't feel any different. And that's great  

Ann, we share a similar diagnosis. How did your cancer present itself? I took myself off to the doctor thinking I had an infection. Luckily my node reacted or I'd still be none the wiser and what a frightening thought that is.

Keep well ladies,

Sandra

xo

Had session 3 on Wenesday and because they changed my anti sickness meds I was sick a lot less and made it into school today! They coped with me munching ginger biscuits and I felt better for being there. I even managed to get to Liam's nativity play on Wednesday night - always a smile raiser.

Yesterday the winds were so strong Central Scotland closed down so my day off didn't count - there was nobody at school.

The family got the Christmas tree out of the loft this evening so that's the weekend's task. Its probably justas well I'm not Australian as I have a sand phobia so Christmas on the beach would be hell!

Good luck with 16th

Mandy

Hi folks,

Session 2 down! Yay. It went well again. I'm loaded up on nausea meds, had my fill of fluids and feeling really good. When my better half gets home I'll walk the hounds. They are looking at me with sad eyes - can't say no to that, lol.

My hair started falling out about a week ago. I shaved it off this week - was getting sick of the mess. It feels good to be bald - but I guess I'm bald at the right time of the year. I think it would be tough going - and freezing - to lose the hair in winter. 

Judy, your tips were great. I followed them for each session and am sure they've made a difference - many thanks to you 

I laughed out loud at the baking cookies for 3 hours straight! My kids have end of year class parties next Tuesday and I have to prepare plates for them to take.... maybe those steroids will come in handy??!

I try to rest, but it's hard. I'm just not good at it. Apart from the crazy energy, how have you been feeling?   

A horse, lol. Yep, I can relate to that. I feel like a bit of a work horse - but hey, with 3 kids aged 2yo, 5yo and 7yo who doesn't feel like a work horse!

Poor hubby, being off his feet. And poor you having to take care of him as well as yourself (and any younger family members too??). Still, it could be worse... he could have 'man flu'! Sorry that was cheeky 

Sandra

I am pretty pleased that I have done 2 sessions, now only 4 to go. Yay. And I have come through fairly unscathed again. Maybe a little more tired this time, but hey, it is a pretty crazy time of the year too and I think we all feel run down. Hubby has 2 weeks off over Christmas and New Year, so I am going to rest up (at least try to).

I hope you continue to do well with the remaining treatments.  Trying to find time to rest is so important.  Fatigue continues to be my biggest obstacle.

You mentioned orange juice craving.  I always know when I'm coming down with a cold.  I crave orange juice.  I never drink it any other time, but when I'm getting sick I can't get enough of it.  I think our immune system knows what it needs and sends these signals to our brain.  At least I like to think so!

Donna

I think fatigue will kick in soon - it has been a mad rush these past months since diagnosis, surgery, chemo etc. I will try and rest up over the Christmas break. Can be hard with 3 little people to look after though...

I agree with the body telling us what we need - it knows.

And actually, this is an interesting little story about my diagnosis - well interesting to me, at least.

About a month before I found the lump I was, quite literally out of the blue, plagued by worry. I couldn't stop thinking about how my kids would manage if something happened to me. It was constantly in my thoughts - and I even started to think of ways to 'prevent' something happening ie: don't drive, stay close to home.  I realised that was ridiculous and went to see a psychologist. He couldn't work out what was going on - no depression, no anxiety, no other worries - so we decided to keep an eye on my mood and play it by ear. 

Then, wouldn't you know it? Breast cancer. 

I am sure my body was trying to tell me something - before I could see/feel physical evidence of it.

It pays to listen to your body/mind.

Glad your session went well. My arm is feeling much better thanks to pain killers and cream. I am back for the last week of school and the kids are all hyper as anything. Snow on the ground and all the teachers are claiming they're exhausted! I actually feel ok - it must be the treadmill sessions. I actually braved the cross trainer on Sunday to see if my arms could take the stretch and the great news is I managed it but my legs were tired after 2 minutes so I gave up. I'll stick to the walking.

 

My daughter is at her first High school Christmas dance - it makes me feel ancient to see her all dressed up in heels I couldn't balance in even today. I had to spend ages curling her hair and then ran a comb through my thinning locks - only a little came out so the cold cap is still working.

 

Wishing you all a very merry Christmas - there was a great recipe for chemo mulled wine in the sunday supplements (where you cook all the alcohol away and are left with the thought!) I may give it a try before session 4 on 28th.

Mandy

 

 

Stage 3             6.5cm MX + a/c   FEC80

Good to hear your arm has healed up and you're feeling better. Yay for getting on the treadmill - exercise makes us feel good. So those cold caps work? That's great.

LOL at feeling ancient... I feel (and surely, look?) like the oldest 39yo on the planet, at the moment. And heels?? I haven't worn any since...umm.. early 30s. Designed for comfort, not style, these days... 

Have a fantastic Christmas with the family and kids. 

Sandra

xo

sorry if this isn't an appropriate thing to post, but I thought some might enjoy this gorgeous song.

It is by an Australia performer, Tim Minchin - who is very funny and talented.  

http://www.youtube.com/watch?v=fCNvZqpa-7Q - http://www.youtube.com/watch?v=fCNvZqpa-7Q

Hope everyone has a restful and joyous Christmas,

Sandra

x

The two places, out-of-state that come to mind are 

MD Anderson Cancer Center(MDACC) in Houston (ranked #1 in the country) and

Memorial Sloan-Kettering Cancer Center(MSKCC) in NYC (ranked number 2 in the country)

I would suggest you consider getting an appointment with 

Dr. Ana Maria Gonzalez-Angulo at MDACC

http://%20faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111 - http:// faculty.mdanderson.org/Ana_Gonzalez-Angulo/Default.asp?SNID=1481996111

or Dr. Tiffany Traina at MSKCC

http://www.mskcc.org/cancer-care/doctor/tiffany-traina - http://www.mskcc.org/cancer-care/doctor/tiffany-traina

I will send you a PM with my contact info. I am a patient advocate on a volunteer basis and would be happy to walk you through, if you wish, how to get an appointment at each breast clinic.

all the best,

Steve

I hope you all enjoyed the holiday period. Just home from my third cycle of FEC and once again - a breeze. Went straight out for a walk with the dogs when I got home. I'm half way through chemotherapy - what a great feeling. My next 3 cycles will be Taxotere. 

I'll be doing rads in April/May. Six weeks - irradiating the axilla, breast and neck. 

How is everyone else going with treatments?

Sandra

So pleased to hear you did well after your first treatment. You should continue to do well too. My oncologist told me how you react to the first cycle is a good indication of how you will cope with the rest. What cocktail are you on?

I just passed my half way mark - yeah!! What a relief.

Damn re the insomnia. Is that from the steroids they gave you?

Sandra

Nita

I have an appointment with the genetic counsellor today to discuss genetic testing. I'm not sure if they will go ahead with the test because there is no family history of cancer whatsoever. 

On another note, still sailing through chemo. Oddly, I find it is getting easier as I go, not harder. The first FEC treatment was the most uncomfortable. And my hair is even starting to grow back. It is straggly and grey, but growing nonetheless. I am now at the half way mark for chemo and move on to Taxotere next (3 cycles). 

The radiation oncologist wants to do rads to the whole breast, axilla, the supraclavicular nodes and my neck. It seems they're not taking any chances and that gives me some peace of mind.

Hope everyone else is travelling well,

Sandra

 

Glad the chemo is pretty easy for ya, knock on wood.

Natalie

There is a bit of an echo in here, lol, so I'm going to stop talking to myself. I sincerely wish everyone the very best with their treatments and health,

Be well and goodbye!

Sandra

thanks for taking the time to write. I really do appreciate it. 

I was thinking about your post while I was walking the dogs tonight. I too have wondered why I am finding this so easy, physically. I am fit and healthy, that's true. And that goes a long way. But I think another reason I have done so well is that I tend to think everything would/will be okay. I remember being told about the side effects of the axillary clearance. I thought I wouldn't have any problems - and so I didn't. I remember being told about the side effects of chemo and again, I figured I wouldn't have any problems and I haven't *knock on wood*. Maybe it is denial, but hey, it works for me. I don't dwell on any of the physical symptoms and I just continue to live life the way I did before BC. So I would say exercise, water, a healthy diet and a buoyant and pragmatic approach to life is what is seeing me through....

I did get the test for the mutation. The genetic counsellor said given my age and the triple negative diagnosis, they were always going to do it. I don't think I have it though. There is no family history whatsoever. My grandparents and their siblings all lived into their 80s and 90s. I think my cancer is one of those sporadic cases... but I'll know more come Feb when I get the results. 

The radiation oncologist isn't holding back on treatment, that's for sure! My neck, supraclavicular, axilla, breast... all getting irradiated. 6 weeks of therapy there. It is a long haul. I tip my hat to all the men and women who get through this and to the ones who are in some kind of treatment for the long term. 

I really enjoy your posts Judy. You're always so quick to respond to posters and offer well considered information and support. You have no idea how often your posts have made me smile and for that, I thank you.

Be well,

Sandra 

 

Miya

it's so overwhelming, I know. But Krisa is right, you can do this. Once you get started on treatment you will begin to feel better. Hopefully you can find some other girls in their late 20s or early 30s to talk to... 

How did you find your cancer, if you don't mind me asking? 

Cheers,

Sandra