sara with my first bc even though the tumour was a grade 1 i had high grade dcis in the margin... but my surgeon is very pro breast conserving surgery and said he would rather do a further excision 4 times than give me a mastectomy he is a professor, written loads of books and is an expert in the field so i totally trust him. as it was i only need 1 lot of further surgery even though i had wee boobies there was still enough tissue there to hang onto my breast.... although i didnt have nodes involved so this may reflect why i could have this surgery.
but if your worried about a Mx you can speak to your surgeon or breast nurse about your options.
although you are worried about your nodes too the positive thing is that only 4 of the 16 nodes was involved which means the other 12 have been doing there job and preventing it spreading... if it had gone to another part of your body normally all your nodes would be affected... the nodes are generally referred to as being in 3 layers and they would usually need to go through each layer to spread... the fact you have only had 4 positive ones sounds like they were only in level 1 as it tends to have the most nodes.
i know you will most likely still be worried which is entirely normal but you can definitely beat it with 4 nodes of 16... the chemo is given to mop up any wee stray cells that may have escaped... but it is normal to think the worst at first.
love and hugs
sara, so sorry about your news today. Book an appointment with your BC nurse so she can explain everything to you and take someone with you to write notes, i had my sister do this for me. Its too much to take in at once and you tend to focus on the really bad stuff at first but if you have a third person this can help put things in perspective a little. At least thats how i felt.
sending positive thoughts and hugs your way.
Fortunately my lump under my arm was ok and has gone my body caught it and it is fine. Thank you
Today I got the results of my lumpectomy to find I need a mastectomy as I have grade 3 DCIS and then the rest I am sure you will all know from there. Sorry I am just abit dumb struck I can't believe it. What does it mean, am I going to die, 4 out of 16 nodes were infected aswell. Oh this is shit, I AM GOING TO BEAT THIS..............
Sorry you had to join us, but welcome to the Sisterhood! I don't know who told you that the ball under your is normal, but they are WRONG! You need to contact your surgeon and let him/her know. You have a seroma and it needs to be drained. I promise you you will feel loads better. I one and had to have it drained it 3x before my body caught on.
Hang in there and know that you are not alone!
I am so sorry to hear about all the loss that is going on around you. However, I want you to realize that you are still here, chemo does indeed suck, but we are glad that you are still here. I will say a prayer for your co-worker and your friend's family.
Cyber hugs from across the ocean!
Thanks for the info, which makes perfect sense. I have to remind myself that we are in different countries and things are done totally different. My chemo is taking its toll on me. The symptoms range from mild to ridiculous. The palms of my hands and fingerpads have turned darker. My tongue doesn't work properly anymore and NO ONE told me about the pain!!!!
However, I am determined to smile and be positive. I have decided not to get anymore wigs for now, because I don't wear the one's I have. Instead, I have these knotted head scarfs and I put my favorite Hello Kitty brooch on them and wear those. People look and stare, but for the most part I believe they understand.
I refuse to be uncomfortable. I didn't ask for this disease, but I am determined to fight it.
Thanks for being my uk support group!
Hi there Pixie,
I have what feels like a tennis ball under my arm but worse still my breast has blown up into a big balloon. I am reassured this is normal as the fluid is finding another path and my body will get rid of it. The boob feels like it is full of milk again. Anyway I go for the results on Wednesday.
i have some different SEs on CMF.... a bit disappointed really as everybody says it would be easier... but even getting it is worse because of the pain in my eyes, nose and forehead from the cyclophosphamide.... but felt a bit better straight after having the first one but think was maybe cause i was away for the weekend but this time i have insomnia, more nausea, sore nails and tips of fingers, sore mouth, puffy sore eyes... think my bloods are ok... well still getting lower as the chemo goes on but nobody has commented on my LFTs or HB so presume they are ok... not had my bp checked since i was in for surgery. do feel just dead tired in my body but not in my brain which keeps mulling things over and over. i have been having hot flushes but put it down to having a cold head then putting my hat or hair on then boiling up and having to whip it off again etc.
i also had to deal with a death from suicide this week from one of the girls i worked with who was only 14 it was really very sad indeed.
hope your test results are reassuring and that you start to feel a bit better about life in general.
lots of love Lulu xx
sorry for going AWOL, but my heads been a bit allover the place this last couple of weeks. Feeling like i hot a bit of a brick wall with the treatment cos of the way they administer the CMF in two parts kinda feels like starting allover again. Having completed my first cycle of 2 i still have 3 cycles to go which is 6 more trips in to christies!!!! So its effectively 8 chemos and i'm beginning to struggle a wee bit! Lulu - i asked them about giving it me all in one like you but they wouldn't do it as they said that clinical trials had shown that this way was moreeffective - again another example of differing viewpoints of different authorities i guess!
Spending a lot of time in work to try and ignore everything thats going on so i guess thats like burying my head in the sand.
Had a few bits of bad news to deal with this week too...kinda stopped me in my tracks somewhat. One of the lads i worked with committed suicide last friday, he was only 18 and its been a bit of a shock. Then 3 days later i got the news that my friends dad had died of septicemia - he has been fighting luekemia for 10 yrs. Then to top it off another friends mum died of bowel cancer on tuesday. Hard to explain how i've been feeling on top of the SE's from the chemo and menopausal syptoms and general low mood (i blame that on the full moon), just very numbing really.
Have managed to catch up with my friend - she had to fly in from oz and was able to spend a few hours with her dad before he died - she's coping immensely well. And last night went out with my other friend, we are planning a memorial/benefit do for her mum, me, and another girl at work who has lung cancer - so really positive stuff and am feeling tonnes better.
Having tests done for anemia,thyroid and liver functioning as ive been having dizzy spells, low appetitie, breathlessness, headaches (constant), insomnia, low temp and blood pressure and have extreme bouts of fatigue that come on suddenly. Lulu - was wondering if you had anything similar with the CMF? Also suffering with horrendous hot flushes on the day after chemo - have you had this?
Sexymomma - hope you are managing your chemo. I only had WLE but my lump was tiny at 1cm.
Sara - do you have a seroma under your arm? I had mine drained twice but it felt exactly like a ball under my arm.
Heidi - good luck with the results next week.
we are all here for you and have been through that awful frightening stage too.... taking all your nodes doesnt necessarily mean they all have cancer in them and if they dont then its less likely to have spread so try not to worry so much about that till your get your results although i know thats easier said than done.
i went through every scenario from they have made a mistake and its benign to not making it to the end of the year.
i have had breast cancer twice and was fortunate that neither was in my nodes but had a few taken out each time to check so ill be keeping my fingers well and truly crossed for you that most arent affected.... and enjoy your pampering.
jan i think whether you have a mastectomy or lumpectomy depends on the kind of cancer you have, what you would prefer and what your surgeon prefers.... mine is very pro breast conserving surgery so will always try to save the breast if possible where as some are maybe more confident in doing an Mx.... a lot of women just want the breast off as they feel it will help reduce the chance of recurrence. and some people who have multi focal tumours or DCIS tend to get offered the Mx as its difficult to remove lots of different points of BC.
hope your chemo is going well.... i had no 6 of 8 today so only have 2 more left and then rads..... so im begining to see that light at the end of the tunnel.
love and hugs
Well you have come to the right place for support. Unfortunately there are too many of us on here who are going through or have gone through the horrors of having breast cancer. I am one of the fortunate ones. I was diagnosed in January, had a 2cm tumour and 5 1/2cm of pre-cancer cells removed in February, started chemo in April and after having my last chemo last week I have to have radiotherapy on the 11th Nov for 17 working days. I was very lucky in that my lymph nodes were all clear and I have been told that there is no reason why I should ever have breast cancer again or any secondaries. I am not going to pretend that it has been an easy ride, in fact the emotions and treatments have been difficult to handle at times and it seemed never ending but it does end and believe me time does fly.
I truly hope that you receive as good treatment as I received from Burton Hospital and I cannot thank everyone there and everyone on this site who have helped me throughout the past 9 months.
Just take one day at a time. I found it helpful in the beginning to write down my feelings and emotions. Take whatever help you can and do not feel guilty if you can't do anything because you are tired. Dust and untidiness will always be there, now is the time for you. Keep coming on to this site, more people will eventually answer you.
Virtual hugs to you and good luck.
Hi there, I don't really know what to write but I have been newly diagnosed with bc and have had a the lump removed and also all my lymph glands. I am awaiting the results to see how many of them have got the cancer in. It was a complete shcok, to me I wnt through all the why me, why. I don't drink...much..., don't smoke, eat healthy and exercise, so why? I have two girls, 6 and 8 and when I was told I had it I got scared that I may not see them grow up. My consultant assures me that I will, but nothing is 100%.
However on a lighter note since my diagnosis I learned that alot of women have had breast cancer and they have been free from it for many years so that made me feel more confident. I am very strong now and am determined that this thing is not going to beat me. I have to live for my girls and I will!
The only thing hard to come to terms with is when you have your nodes taken out it does take it out of you so I can't walk very far and I feel like I am walking around with a ball under my arm and I ain't allowed to lift things or even hoover. But the good side of it is my husband and family pamper around me at the moment which is great, ha ha
9 hours? You go champ!!! Staying positive is what will make this better for all of us. Don't get me wrong there will be days when it will be hard, but an overall positive outlook is healthy and really best.
I have noticed that most women seem to have a masectomy instead of a lumpectomy over there, do you know why that is? My chemo is really intense and I am trying to keep my head up about it all. I should finish everything by June 2010 I think.
How are you doing?
Peace & blessings,
glad everything has gone well and your cons is pleased with your progress.
9 hour op! wow!
i think your right about friends and family i thing they cope better if your positive. i think i am generally a happy positive person but getting BC for the 2nd time really floored me but in time and you get used to it i think even if your down you do start to see the light at the end of the tunnel and that its not a death sentence.
sexymomma your chemo sounds really intensive mine is cycles of epi every 3 weeks and cycles of cmf every 3 week... cmf no 2 next week and not looking forward to it as it caused pains in my face last time when i was getting it but hopefully not so bad this time.
i was really worried about feeling or being sick as i was really bad after anaesthetic but i have been totally fine on chemo some occassional nausea kinda more like morning sickness but they gave me strong antiemetics so that has really helped.... my main problem is with my veins which have been damaged.
love lulu xx
Hi everyone how are you all doing?
I had the op last friday which actually lasted 9 hours i was discharged from hospital on tuesday, i am healing really well and my ps was really pleased with how quick everything was healing, i was sent home with one drain left in my tummy but it was worth it to be able to go home and be with my family, i went back to hospital on thursday and they re-dressed the flap and removed the drain so i got a bit of freedom back, my tummy is obviously still swollen but it is going down more and more each day, since day one of being diagnosed with breast cancer i have had a positive attitude towards it, perhaps it is the only way i know of coping with such devastating news, i even gave myself a nick name of baldy one tit, my friends and family also found comfort and strength with the knowledge that i coped so well, positively and strongly against the poison that had no right to be in my breast.
I know i still have a way to go, next surgery will be reconstruction of my left nipple and also chemo but i know i will get through it but i also know that it is a long road yet to travel on.
I want to thank you all for the best wishes and support you have given me through your messages on here.
I will get my results from my consultant on the 13th October and I will let you know as soon as i can what they are, oh and a follow up appointment with my ps on 12th October so i got a busy week.
Take care all of you
Lulu and Pixie I love the hair!!!!
Cashier/Heidi congrats on being node negative!
I have no idea what meds you guys are on, but I am taking the drug adriamycin and cytoxin. Not sure how much of each, but my first round lasted about 5 hours.
My schedule is like this: chemo every 2 weeks for the first 4 rounds, then for the last 12 it will be once a week. Then I get a break and will start 6 weeks of radiation. My biggest fear is being nauseated and or having to hurl. Not my favorite thing at all.
I have several meds that I take for the nausea and so far it has been working like a champ. It is weird to wake up at 2 am because of nausea, but I tell you my hand reaches for that pill bottle quickly.
My next one is this coming Thursday. The worst thing, besides the nausea, was I had a sore in my throat. It hurt to swallow and was uber painful. My hair went crazy, so it is now gone. My eyelashes are coming out about 4-5 everytime I rub my eye.
My symptoms didn't show up til about 3-4 days after my treatment and the severest seems to have lasted until just the other day. Now I am still tired, but so far I think if all my treatments make me feel like this I will be alright. However, I don't think that will be the case. I will definitely keep you posted.
I should finish my chem some time in February 2010, that seems like a long way from now, but I know it is only a few months. Did you guys ever experience muscle spasms? Well, I am going to finally go lay down. Will check in with you ladies later.
Peace & blessings,
yeah your hair can start to grow back on the CMF part but you will prob still have a build up of loads of epi floating about for a few more weeks and it can still cause hair loss for some people... you never know though you may hang on to those 10 lashes but i now down to 2 on the left and 0 on the right.
hope it all goes well for you today and you dont suffer too much.... im off to see a lady at maggies about doing some art therapy.
thanks for the heads-up on the poo front lulu - just reminded me to dose up on the old lactulose and sending my mum out for prunes in the morning!!!! I thought hairy parts started growing back on cmf? I have about 10 eyelashes left on each eye - how flippin tricky is it putting mascara on!!!
The lack of energy really hit me this time so thats encouraging.
LOL @ the coloured hair SEs Pixie.
as for other SEs iv actually been much better... although have now lost my very last right eyelash today and only down to 3 on the left side.
i had 1 mouth ulcer 4 days after 1st dose of CMF the first iv had since started chemo... had really bead heartburn on chemo night had to double dose of omeprazole... and have horrendous constipation.
feeling less tired and i have a bit more energy but not sure whether thats the change in chemo or because i was away for a relaxing weekend.
anyway im glad im only getting 4 lots as the chyclophosphamide was horrible at the time although it may have been worse because i had sore eyes... but still dont fancy getting 8 anyway.... nurse thinks i had quite an extreme reaction to it though so hopefully you will be fine hunny.
good luck for friday.... hope the travelling doesnt take too much out of you.
by the way lulu - we do make a colourful pair with our hair don't we!! - people are gonna be thinking this is a side effect to the E-cmf regime!!!
great news re the nodes heidi and best of luck with the mx on friday. Theres a great thread on here for tips on chemo thats worth having a look at.
Lulu - i never thought to ask how much dosage they give you but i will ask on friday when i go for my first one. Hows it been with the SE's after your initial problems by the way, anything else i should look out for? I'm also going to ask why they give it in two parts - in some ways it feels like i'm facing 8 more, though i know in reality it still counts as 4 cycles - its a fair trek for me to christies AND it takes up TWO of my precious weekends in a row, puh!!!!
Hope the side effects are not too bad sexymomma.
hey sexymomma im glad your 1st chemo ordeal wasnt as bad as you were expecting. i found the chemo ward quite a light hearted place tbh.... its usually my sister that comes with me and we sit and have a giggle.... and have spot of retail therapy on the way home while im still feeling ok.
what is your dose dense schedule like? pixie and i are both on the same regimen which was identical for first lots of epi but now i get CMF every 3 weeks for 4 weeks and pix gets it on day 1 and day 8 then 3 weeks off.... think its means to be a lesser dose though.
pixie i get 1200mgs of C 80mgs M and 950mgs of F each time just wondering how that compares to what your going to get?
Heidi thats really good news from your PS... and good luck with surgery... i guess the best advice is just take it easy and listen to your body... rest when you can and be good to yourself.
Sorry for the delay in posting an update, the appointment with the ps went really well they are going to grant my wishes and give me a mastectomy on my left breast using my own tissue and skin etc and also do a reduction on my right breast at the same time.
I had my lymph node biopsy done on 9/9/09 and I got my results last thursday, they removed three nodes and all of them were clear so I don't need to have them all removed, my mastectomy will be happening this friday 25/9/09, 5 hour op then 7 days in hospital, then its the wait to have the chemo any suggestions and advice on how to best get through it would be appreciated.
Take care ladies
Well done getting through the first chemo sexy momma - i also had a laugh on my first but that was mainly due to the fact that i looked an absolute pratt with the coldcap on! My periods are allover the place...as are my hormones. They have been veryyyyyy long...so be prepared, just in case!
As for sleeping - i got the best few nights sleep i had had in a long time after chemo, but then week 3 is usually horrendous with me making up on almost an hourly basis.
Cashier - hope your app with your surgeon went ok.
I did it! I finally had my first round of chemo. I do not mind telling you ladies that I was terrified of the process. My youngest son was in the hospital at the time. My husband couldn't be with me, so my sister went, and you know what? I had a BLAST!!!
We managed to turn this very scary process into heartfelt moments filled with laughter. I know that not all of my treatments will be this way, but wow what a way to kick it off.
So, I don't know if I shared my dream with you ladies or not. The one in which I learn that I am preggars right before my chemo starts. Anyway, I forgot to get checked and now the chances of my being preggars are no more. My period started an entire week earlier than it was supposed to and that has NEVER happened before.
I was mad at myself for a little while, but I have come to terms with it and feel that if God wants me to bare more children then He will make a way. So, now that my period has started early I am wondering when it will stop and for how long. I normally only do 3 days, but I don't think that is going to happen now.
Are any of you ladies on the does dense schedule? I am trying to figure out the best way to get some sleep.
My port is in, but I tell you if something weird is going to happen, it's going to happen to me. The bandage they put around the site was so tight that my skin blistered. Hurts like a sonofabeep. Anyway, we just celebrated labor day here in the states. It was good, because my mom and grandmom (a 17 year bc survior) came down for a visit.
I'm now counting down the days til my first chemo treatment (9 as of this posting). I'm also preparing myself. I have picked out three wigs, and 4 scarves. I still need to get the eyeliner for my brows though. I'm working from home today, which is a blessing.
Gonna post a pix soon!
i may go back on the tamoxifen but not for the most recent tumour as it was hormone negative and doesnt respond to tamox but as i was only on it 3 years can go back on it for another 2 years for the first one... not made my mind up completely but will probably just take it again.
my daughter gets very wrapped in her own world rather than with whats going on with me... think its probably just a teenage thing... some time she can be quite thoughtful but mostly its all about her.... she was more concernd the first time but this time i think oh mum got through it before so it will be fine.
grade 3 tumours are faster growing than grade 1s so the grade 1 tumour was probably there for a number of years where as the grade 3 was probably only there a number of months... and no apparent sign of it on the previous years mammogram so i guess they can grown fairly quickly if they are aggressive tumours.
anyway i wish you loads of luck with that gruelling chemo schedule they have given you.
cashier good luck with your PS appt on monday.
love and hugs
Thank you all for the lovely welcome to the site and for all the advice and your knowledge.
I going to see the plastice surgeons on monday and my consultant so i shall mention it to them then, I will let you know what they say, I have a feeling I may be starting the menopause (I am 43 in October) but who knows.
Thanks again ladies
Hi my periods where always regular,once i had my first round of chemo on 29th april this year they changed i was on for 6 days off 6 days this went on until then stopped on 1st june nothing until a fortnight ago then started but very light for a week,have had a week off and started again yesterday.I dont know if they will come back regularly as my oncologist said it can take about a year.Im 45 so it may have brought on the menapause early but have had no other symptoms so suggest that. julie x
Today, I think is the first of many "off" days for me. I had to go back and give more blood, because the lab lost my originals. Then the tech couldn't get the blood out of my arm and had to go in the back of my hand. So, now my right arm hurts and my left hand does too.
Tomorrow, I am having a port put in, which will negate them having to make me look like a pin cushion. It is becoming more and more real to me. Three months ago I had a clean bill of health. Now, in 15 days I will be starting chemo. I want to remain positive, but for some reason today it is a wee bit more difficult than before.
Hi Cashier and welcome!
I think that is an excellent question. However, I haven't started my chemo yet, and my cycle is going like clockwork. I am interested to see if that will change for me or not.
I'm looking over my treatment plan now, but I think it is just for chemo as I don't see anything on here regarding my hormone treatment. I think I am going to be on Tamoxifen, but I am not 100% sure, because I have signed up to be in a clinical trial. Hopefully, I will find out soon and then we can compare notes on that too.
My oldest seems to be doing better, but I have noticed that he checks in on me a little bit more which I think is sweet. My other 3 don't seem to be bothered too much, but I think that is because I don't look sick nor have I stopped being Mommie. I am hoping that the transition is smooth for them, but I guess I will have to wait and see. Gee, I seem to be waiting a lot lately ~ ugh.
I will be looking at wigs on ebay too. I already started looking at scarves. I had a dream about those too. 🙂 Would love to see pix of you in your blue one.
I was surprised to learn that I would be having 16 rounds of chemo too! Most I had read about having was 8 and that was once every 21 days. I told my husband that when I do something I go ALL OUT, lol. Since, mine is for 16 weeks and the schedule starts out at once every 2 weeks and then once a week, I thought perhaps something else was either really wrong or they were going to throw the kitchen sink, the baby and the bath water at it. I believe it is the later and while my brain is bringing up all of these scenarios of me being sick and looking like a waif. I constantly remind myself that it is only for a little while. Sometimes that helps and at other times...
I am sorry you developed a new tumor. I worry/wonder if that will happen with me also, but then I look at the treatment schedule I have and I think "it better not!" I don't understand how with all the test that they do how you could have a new one and it be at a higher grade than your first! Are you going to do the tamoxifen?
How is your daughter dealing now? I started a book in which I am keeping all of my labs and treatment schedules in. At first I thought I was doing it for my daughter, but I realized that I wanted to maintain my own medical records for myself and my kids and theirs too.
Still smiling and still,
my periods were stopped as i have a mirena coil in... but since starting the chemo they have come back although they are very erratic with prolonged bleeding.
i imagine like everything else with this disease it varies from person to person. I'm 35 and pre-menopausal, still having very light and erratic periods and i'm almost 1/2 way through my chemo. I'm usually like clockwork! I'm afraid i dont know what a spring is so don't know how relevant this is.
It may just be to do with the stress of all this that your periods have changed perhaps?
good luck with the rest of your treatment.
Welcome to the BCC discussion forums, where I'm sure you'll get lots of support from the other users of this site.
Please do also remember that the Breast Cancer Care Helpline offers support and information. Calls to the Helpline are free, lines are usually open Mon – Fri 9am to 5pm and Sat 9am to 2pm, although due to the bank holiday they will now reopen on Tuesday 1st September at 9am.
Kate, BCC Facilitator
Hi there Ladies
I have been recently diagnosed with breast cancer, I don't know the grading or anything like that as of yet.
I have a question I would like to ask you Ladies, when did your periods stop? did they stop before any treatment started or when your started chemo?
I had a spring put in last thursday (27.08.09) morning and my period was due on Friday 28.08.09, could this have something to do with it or could it be the lump that has prevented my period coming?
I thank you in advance for any responces.
its interesting to find out how treatment differs in the US. My breastcare nurse mentioned to me at the start not to look at american websites as they are at least 5 yrs ahead of us in terms of cancer treatment. Do you know what kind of hormone treatment you will be on? I'm ER/PR+ too so will also be on hormone treatment though i've not asked what yet.
My son is only 11 but his attitude has been really positive and he's an amazingly strong little boy - sons can really suprise you sometimes!
I have a fab blue wig...i tried a normal brown bob, but it just wasn't me! Wore the blue wig out on friday nite and got some fab comments - think i might get a platinum blonde one next...am actually having lots of fun wig shopping on ebay!
Good luck with the chemo.
your chemo regime sounds really tough... 16 is loads the most anybody gets here is usually 8. i am having the same kind as pixie and have just had my last epi and start cmf next month only i will have it every 21 days the same as the epi rather than day 1 and 8 then 3 weeks off.... my veins are damaged in both arms from the epi so its great that your getting a portacath inserted it should make it much easier.
i had a tumour 3 years ago it was grade 1 stage 1 1.3cm hormone sensitive her neg but wasnt offered chemo as my risk of recurrence was so low but had rads and tamoxifen following surgery
however i developed a new tumour this year it was a grade 3 stage 1 1.9cm and was hormone and her neg so only available treatment... had same kind of surgery wle and snb then having 6 months of chemo then 5 weeks rads then to restart the tamoxifen if i want to.
i was so sad read about your son.
when i had bc the first time i was 37 and my kids were 15 and 11 and they were both really upset mydaughter had written a note granny had breast cancer, mummy had breast cancer, will i gte breast cancer.... it made me so sad to read.
my son came through and gave me hugs when i was sad and said not to cry which was hard.
love and hugs
I am back. I FINALLY have all of my test results. I was waiting for my Oncotype DX to determine my treatment. Well, in the mean time of waiting my brain was providing me with all kind of scenarios. However, none of them mattered up until my oldest (Daryn ) came in my room at o dark 30 crying. He had a dream that I was crying and then just before I died he crabbed onto me.
Needless, to say I couldn't do much of anything, but hold onto my 5'11 baby as he trembled, cried, and begged me not to leave him. At that point in time I decided on a secret number. If my test came back at that number or above I would ask for chemo, because I promised my baby that I would do everything I can to not only fight, but kick cancer's butt.
So, on 8/26/09 my onc says my her2 is still negative, but my score was 20. My husband looked over at me and asked what my secret number was. It was 13! So, now my journey begins.
I will be having a port put in on Sept. 3rd. I will have 16 rounds of chemo and then 6 weeks of radiation plus some form of hormone therapy. Also, I learned that I qualify for a clinical trial, so I have signed up for that too. I don't want to just beat this for myself and my family, but for all of us and those that will come after.
Daisy & Pixie my first 4 chemo sets will be two weeks apart, and then the last 12 will be once a week for 12 weeks. My onc says that my hair will probably start falling out by the 2nd treatment. I think I am ready. I had a dream that I was at CVS pharmacy buying some Almay eyeliner so I could "draw" my eyebrows back.
My sister says I should get a red/auburn wig, since I already have a blonde one from a 70's party I went to.
Well, I am at work right now and need to dash. Just wanted to keep you guys updated. BTW- I live across the pond in the States. Warner Robins, GA to be exact and reading your post made me feel welcome and a kinship. Heck, I talk about you guys like you are my BFF's.
Many thanks, and keep smiling!
i assume that if you have to wait for the HER2 test they are not sure yet whether or not you are her2 positive. If you are i think you have to have chemo before herceptin and this may decide what type of chemo regime you are offered.
It does seem that they really take their time, and all the while you just want to get on with it. I had to wait 4 weeks after my surgery for my results but then started the chemo the following week (just when i was hoping for a bit of a break to get a holiday in!) Managed a few days in brighton with my sis to get my head round it!
Since then everything is going really fast. I'm on 4 cycles epirubicin (every 21 days) then 4 cycles of CMF 2 weeks on (three weeks off) about 6 months in total. I have had a good run of it so far - some problems with my viens but nothing major and its just administered directly into the vien - takes about 45 mins. Hair has gone as you can see from the pic - thats my dreadlocks i'm holding up, not a dead ferret!! I tried the cold-cap but it didnt work, as my hair started falling out around day 14.
I have been exercising as much as possible throughout but the 10 mile walk i did after my first chemo was pushing it a bit far!! Prior to this i used to cycle on average 10 miles a day and go kickboxing 1-2 week. Now if i manage a cycle or walk round the local lake (about 3 miles) once a week, i'm well chuffed with myself!!
get an appointment to speak to your BC nurse with your concerns - they ahould be able to shed some light - though i do find that they tell you the worst possible scenarios!
Like Daisy - ive been lucky - was out partying this weekend until 6am (just made sure i drunk plenty of water as well as cider - as i got really dehydrated and ended up with an infection the last time i did it!). Same ethos really though - on the days you feel good - get out there and be normal, on the crappy days sleep as much as possible!
Everyone reacts differently i suppose but trying to stay as 'normal' as poss is half the battle done!
yoo-hoo....here we go...
Hair loss - that started about 10 days after chemo no 1, a few strands at first, then within days I could pull out more, a bit like a dog when it moults. So, got hubby to cut hair off, and my son gave me a very uneven no2 with the clippers. Losing the hair was not half as traumatic as I thought. In fact, I love my little peanut head. I can't eat a packet of Revels now and eat the peanut one without thinking of my bonce! An itchy head is a sign of things going on in the follicle dept! Itched when it was coming out, and is itching like mad now! At least I know it's not nits!
Chemo finished July 10th and I now have what can only be described as bum-fluff on my head. Fine, thin and sparse, very like a newborn, but my head gets darker everyday as the hair is pushing it's way up.
Chemo - brings with it different problems for different people. One thing is does bring for all is constipation! Get ready for rabbit pellet poos. Lots of good stuff on the market, when the time comes, let me know and I will tell you what I used. For me, no tastebuds and steroid face was a pain, as mine went really red. I looked like moonpig.com. Hubby called them Rosie & Jim. I went to concerts in London on chemo, meals etc and carried on as normal as best I could.
6 rounds means a visit to the chemo unit once every 21 days to be poisoned, six times. So my chemo was 27.03, then 21 days later on 17.04....etc
The tiredness is a pain,,,,just go to bed! Get some books, put the TV on, nice glass of ice cold water, hop into bed and zzzzzz away, and only get up if you feel like it! Stock up on some DVD's for the younger child, so at least he/she is entertained while you lie down.
Nothing makes the waiting go any quicker. You have a variety of tests (bone scans/organ scans) and the wait is awful, but bugger all you can do about it!
I started Tamoxifen exactly 3 weeks after my last chemo and had the Zoladex implant on the 2 day of RADS.
Keep the questions coming, and let me know what the test results are.
Chin up chucky...Daisy xxx
I have lots of questions. You are right waiting is the worst! Since, I am waiting I can't help, but wonder if I should have forgone the test and just went on with the chemo. There are just so many unknowns. I am glad that you were able to do "normal" things while going thru chemo.
My onc did tell me that chemo is not as bad as it used to be and that is a relief. Although, the other night I dreamed I went to CVS pharmacy and purchased some Almay eyeline, so I could "draw" my eyebrows back. I don't know if that is a premonition or my mind playing tricks on me. How long is 6 rounds of chemo? Did your hair come out? How soon does it do that?
As far as radiation goes, I already know that I will have 6 weeks of that, but am not sure when I will start the Tamoxifen or for how long. I do plan on trying to exercise some as I go thru this. I have heard and been told that it may help with the fatigue. How have you handled that?
Many, many thanks!
Morning oh sexy1....
Your diagnosis is indentical to mine! Grade, size etc...I was diagnosed just before Xmas 08 (fab eh!) and had the lump and surrounding tissue out early Jan and 6 nodes. One turned out to be dodgy so back in they went and whipped out the rest.
I have completed 6 lots of TAC chemo without too much fuss. No sickness or anything nasty really, but I was lucky and the attitude of 'bring it on' really helps! Have now had 4 zaps of radio and thats ok too. Tamoxifen hasn't given me any side effects, neither has the Zolodex implant.
I have just turned 40, 2 kids, 18 and 15 who have coped really well, although it has helped them by seeing me get on with things and not take to my bed too often.
Fingers x you will get some info from the Dr's soon, waiting really is the worst bit. Chemo etc is do-able, not nice but you can get through it. I was going to concerts, meals, shows whilst on it, you just have to make sure your good days are as normal as can be.
Anyway, anything you want to know, email or PM me, I don't mind.
Love and hugs...Daisy xxxxxxxx
I forgot to mention that I'm only 37, married, with 4 kids (16,13,12;10). Although, on ocassion I have 6 kids. My other 2 travel and sometimes they come home. Their names are "I don't know" and "It wasn't me!" 🙂
Can annyone shed some light on the oncotype dx for me? I'm waiting for my results, but am starting to think that I should just start the chemo.
@Pixielox ~ I agree. That is how I have always dealt with things, in a positive manner. However, this waiting thing is very annoying. What is chemo like? Did you have to get a port? How long will you be doing it? I have so many questions, but no one (not my doctors) are able to answer me (for now).
Keep your chin up and don't loose those keys!
just to let you know i totally agree with the positve attitude you seem to have. I was dx in April had WLE may and started chemo in july. Will be having radio and hormone therapy in the new year. I have my down days but cant help feeling optimistic and mostly upbeat - i'm sure it must annoy people, but its the way i cope with major traumas in my life. Small things on the other hand like losing my keys...i turn into a raving lunatic!
My story is long, but here is the short and painless version. On 7/15/09 I was diagnosed with Stage 1 invasive ductal carcinoma. My tumor was 1.2cm.
I am currently in limbo and haven't started any treatments. My onc wanted to redo my her2 test using the fish method, and wants the oncotype dx performed. Until those comeback, I won't know if I will have to do chemo or just radiation and tamoxifen.
I am determined to remain positive and a cheerleader to any and all that need one so, let's be buddies!