2012 sisters

jpmomof3

Wow I am gone for a few days and there are pages of posts. I have just been... Busy. Life is keeping me busy. That's a good thing. Other than the fact that I have scars all over the place and go to radiation treatments and have no hormones left and half a breast gone sometimes I actually feel almost normal. I am going for radiation treatment 11 today. One third of the way done. 22 more treatments and that ends the active phase of this I hope forever. Just recovery and tamoxifen to completely take away all my feminine hormones.



But I am working I am running and I am hanging out with my kiddos. That's life. That's what we do all this fucking chemo and surgery and radiation for.



I can't comment on everything, would take a whole page but marianeelizabeth, I am pissed off for you for the bad news on your surgery path results. A lot of us have and that happen, me included and It is a real blow. We have all been dealt so many blows already. Enough already eh? Well there is only one thing to do, do everything you can with the new information to beat it. What choice do we have.



Aruba, sorry to hear about your job. You sound like you have a good attitude about it though. You definitely deserve to treat yourself for a while! Again, we have all had so much bad news, more shit icing on a vomit cake...



Tina, I sincerely hope you don't rely only on alternative treatments after what you have told us about your surgery results. I try not to judge people's choices but this is one time that I have to say no way in hell... Especially if you have positive nodes. You are too young to take a risk like that. I agree with the comments that the people on those alternative treatments that had good results had good results only because the surgery happened to cure them. If you want to do those treatments in a edition to traditional therapy fine but truthfully I think those treatments are wishful thinking. Anyone who relies solely on alternative treatments will be dead. Don't do it.



As for nails, I lost one great toenail and the other lifted but I didn't take it off. It is halfway grown back. The toenails got sore for a while like I was running too much (I wasn't running at the time but walked three miles a day) and three turned dark, two of them the great toenails. I removed one because is was too moist underneath and I was worried about infection. The other I didn't even realize wasn't attached to me until 2 months after chemo but it is still hanging on at the sides and doesn't bother me. I never had any trouble with my fingernails. I never did anything with my nails other than keep them short.



As for chemo effects. AC took my energy and made me feel queasy like being pregnant. The Ativan helped the couple times I needed it. The steroids kept me awake for three days but ambien worked great. I drank a lot of fluids and walked three miles a day and was able to work through all of it. Taxol was a breeze in comparison. It was just the steroids that bothered me. I had the slightest tingling intermittently in my feet for the last two taxol treatments. It was gone within days of my last treatment.



Chemo is doable. If I can do it anyone can. My secrets were ambien to help sleep, lots and lots of water, and exercise.



Ramols I hope you can get over that cold/ infection. I hated that fear of getting sick while on chemo, and most of all avoiding my kids. Hang in!



TAZZY love the group hug animation. Keep the humor coming.



Hugs to everyone that needs them!

Tazzy

Alternative therapies.... I asked my MO at the beginning of my dx about them.   She took me by the hand looked me in the eye and said "if you wish to try alternative medicine/therapies, I cannot stop you.  But in my experience every woman I have treated who has refused chemo as a 'traditional' medicine is back in this office 6 months later and there is nothing I can do for them... it is too late". 

jpmom... great you are getting on with life.     I am attempting that too least until rads start.  

I wish you all a better day today, whether that be processing crap information or dealing with SE's.    In the words of Ramols - "Go Find Your Happy Today".

liefie

Tina, please take jpmomof3 and Tazzy's advice. You are too young to play around, and have to hit this cancer now with all you've got. Please do it.

Cindyl

A friend of mine lost her mother to alternative therapies.  She had a very treatable stage and grade IDC.  Refused Chemo.  Refused Rads.  Drank all sorts of concoctions and ate vegan.  Not that there's a thing in the world wrong with adding a healthy diet and some complimentary treatments.  But putting all your eggs in that basket?  No. Not for me.

PaEaglesFan

If there was a like button here, I'd be hitting it for all of you ladies chiming in about alternative treatments.  
Tina, What we go thru to rid our bodies of this disease is not pleasant, but it is doable.  I am 45 years young and I am throwing everything at this that I can because I want to be around for a good long time so I can enjoy every mother's wish (curse?) for their daughters and sons... "Someday I hope you have kids JUST LIKE YOU!"

Anonymous

Question for you ladies who worked through chemo and had Taxol. I am trying to figure out how many more days off I'm going to need for chemo. I know my deal with AC, but Taxol is a big question mark to me. Is it realistic to think I'll just take the one full day of my treatment and work the rest? With AC I take off the day after as well, and then just sneak off for naps here and there and make up hours in the middle of the night when I can't sleep... Thanks!

Tina13

Thank you ladies for your advice on alternative treatments! I guess I will have to deal with chemo... Acutually today I got news from my second opinion - surprisingly they said I do NOT need another surgery because my margins look clear to them! I am SO lost - have no idea what I should do now... Get 3rd opinion??

Soyaandpepper

Tina13-I've just read and updated all the posts since I've been out of the country last week. Sorry for being so late in replying to your post. It sucks to be so young and have this damn cancer. I'm 35 years old and don't have kids either. After so much research on chemo I've decided on NOT doing chemo. I'm triple positive so I'm on tamoxifen and also going to do herceptin for a year but no chemo. Since you've read the posts I think you have an idea that my doc told me chemo was optional for me. I understand about all ladies thinking about throwing everything and the kitchen sink at the cancer. I'm the same way, when I found out about my cancer, I was ready to do everything including chemo and rad and surgery. Now you wanted an update on my case so I could only speak for myself and no body else here. 

I did the bilateral mastectomy and 1 step to implants which was a success, I did a SNB and it was cleared of cancer so no rads for me and my pathology didn't find any other lumps or cancer. Also I have no vascular invasion, so here comes the chemo part. I was researching on everything chemo. I felt that it was not for me, I started juicing and drinking wheatgrass shots. Also eating organic and cut out diary and meat. I just felt that chemo was not the only option. Some people did everything including chemo and it still came back. So chemo is no guarantee either so don't think that. I've decided to do tamoxifen since I'm ER+ 100% and PR+98%. Other than that, I really believe that our body is amazing at healing. I'm not praticing Gerson's or only alternative med but rather a combination of both. I'm actually into the alkaline vs acidic diet and you could gain a lot from reading this book "Anti Cancer-a new way of life" by Dr David Servan Schreiber. He was a doctor too and had brain cancer 3 times so his research is really eye opening since he survived his agressive brain cancer twice. Also I read Crazy Sexy Cancer by Kris Carr who is living with a rare form of cancer for 10 years now without doing chemo, surgery or anything else ( Not because she doesn't want to but she could not). Just remember unlike you, I don't have cancer in my nodes. 

I also throw all of my make up and personal products in the bin and researched and got new ones that are not harmful with toxic chemicals. And also the household cleaning products I throw away and bought ones that are not toxic. Do your research and see if chemo is for you, just because a doctor say its all you've got doesn't mean that.

As to your 3rd opinion, I think you should check another doctor to be sure. Remember they see so many patients that soon enough you could just be a stats. be your own advocate. ask all questions over and over. its your body, if you feel that you want the surgery because 2 docs have different opinions on your body then get another opinion. In the end you have to live with it and you should have no regrets. 

If you have any other questions, please do not hesitate to ask. Go to the other threads in this forum like the complementry and holistic med. and alternative med and read the discussions there and see what they're about! I'm just saying that conventional med is NOT the BE ALL and END ALL.  

Scorchy

Good news, peeps!  Oncologist's office called today and I have an appointment tomorrow (Wednesday).  Much earlier than Friday, October 5!  Woot.

Never anticipated an appointment more than this one.

MrsCich

So happy you got in so quick with the Dr, Scorchy. Hoping you get quick answers to get this show on the road.

juneaubugg

Scorchy.v keep us posted please!



Ramols. You'll full great tomorrow



Sorry I've been now. I had AC on Thursday, fluids on Friday, and Monday and turns outa rather low red count.... So ice been sleeping.



Today that pulled my port. Last treatment will be iv. Seems there wasa lot of unexpected scar tissue around my port already,v surprised the Dr. He thinks thats why it became raised and a bit more uncomfortable.



So October 10th last chemo, October 24th I have my appointment with my PS to plan, discuss and schedule my exchange to squishies!!! I CAN SEE THREE LIGHT AT THE END OF THE FUCKING TUNNEL..... And it best not turn or flood!!!!!!

I'M TIRED, really tired, unmotivated, and need to get in the mindset to road trip to elimination Wilmington MC to see three in laws later this week.



That's all I got for now chemo brain is certainly cumulative as I keep making less and less sense..... Whatever.... Law & Order season 2 on netflix, here i come.



Love to all........

juneaubugg

Scorchy.v keep us posted please!



Ramols. You'll full great tomorrow



Sorry I've been now. I had AC on Thursday, fluids on Friday, and Monday and turns outa rather low red count.... So ice been sleeping.



Today that pulled my port. Last treatment will be iv. Seems there wasa lot of unexpected scar tissue around my port already,v surprised the Dr. He thinks thats why it became raised and a bit more uncomfortable.



So October 10th last chemo, October 24th I have my appointment with my PS to plan, discuss and schedule my exchange to squishies!!! I CAN SEE THREE LIGHT AT THE END OF THE FUCKING TUNNEL..... And it best not turn or flood!!!!!!

I'M TIRED, really tired, unmotivated, and need to get in the mindset to road trip to elimination Wilmington MC to see three in laws later this week.



That's all I got for now chemo brain is certainly cumulative as I keep making less and less sense..... Whatever.... Law & Order season 2 on netflix, here i come.



Love to all........

juneaubugg

So still behind. But Tina FUCK FUCK 27....FUCK! And I resented 44. FUCK!!!! I hate cancer. I hate it's 4am and I can barely sleep cause everything hurts tonight. I have this disease will take me October too ( a big celebration month around here). Oh well start early; 9/30:

Nieces 20th birthday

Dad and step mom 33 yr anniversary

Old time friend Mikes birthday



Then October:

10/5- 6 years clean and sober, 10/17-DH Birthday

10/21-nephews birthday

10/31- 3rd wedding anniversary!



11/2- Colonoscopy and 11/5 new job starts!



And hopefully exchange surgery around thanksgiving to Dave days I won't have off yet.



So is this crappy year over yet or what?!?!!!!!!!!!?! Cuddles Ladies!!!!!

Scorchy

Juneau, you poor thing.  You have good things to look forward to as this shit becomes history. Good things that put the bad things in perspective.  But who wants to hear that crap?  Can't wait until you're all past this.

Oh, and colonoscopy, yay!

websister

Ramols - thinking of you today



Tazzy and jpmom - good to hear that you are enjoying life and keeping busy



Scorchy - I will be awaiting your update



MrsCich - will be awaiting your update also



Tina - you have been given info re: alternative and chemo, lots of confusion and decisions to make. I'm not sure what you have for insurance but that also needs to be taken into consideration. I have had several claims to make recently and they all asked my MO if I was following the recommended treatment, that does seem to come into play in their decision to approve. It can also be helpful in paying for meds and chemo, with alternative therapies it can get expensive and it is usually out of pocket. Tazzy mentioned what her MO told her, I have experienced this personally with a close cousin who chose alternative route, unfortunately she die die and left young children behind. With your diagnosis and lymph node involvement I think you need to be very careful about choosing not to go with chemo. Before you go for third opinion you might want to check back with first dr and find out why they felt you needed further surgery, maybe they would be able to explain their reasoning and second could explain why they feel margins are ok. Hugs



Juneaubug - sounds like lots to celebrate but busy time when energy is low. Take it easy, be kind to your body and listen to it, low red cells definitely make you more tired.

Colonoscopy - hope it shows the Crohn's behaving itself.



Everyone else - hope it's a good day for you



Take care everyone

SusannahW

Lost this thread for a few days, missed it!



I'm having a very weepy day, no reason. Feeling very sad, but the previous 2 days were good. Do any of you go through this from time to time? I have a great husband, kids, and friends, just feel alone.

Susannah

MrsCich

Morning ladies. I got my call from my Onc. The tumor board met and even the pathologist that did my actual biopsy was there. He showed the images of before and after the biopsy and my the size of invasive cancer in my tumor was 1.2 cm and .6 of it was DCIS. So I do get to join the dreaded chemo club. She said all of the Drs were unanimous in their recommendations. Even though I'm reassured that all the head drs at my cancer center reviewed my case and agree on a treatment, I was still hoping for less than .5 being invasive. Blah!!!



The other mass that was quite large was mainly high grade DCIS but she's not ruling out that some invasive was in there hiding as well.



I'm waiting my call for my first treatment. I told her I want to start ASAP so I can get it done with ASAP.

MrsCich

Morning ladies. I got my call from my Onc. The tumor board met and even the pathologist that did my actual biopsy was there. He showed the images of before and after the biopsy and my the size of invasive cancer in my tumor was 1.2 cm and .6 of it was DCIS. So I do get to join the dreaded chemo club. She said all of the Drs were unanimous in their recommendations. Even though I'm reassured that all the head drs at my cancer center reviewed my case and agree on a treatment, I was still hoping for less than .5 being invasive. Blah!!!



The other mass that was quite large was mainly high grade DCIS but she's not ruling out that some invasive was in there hiding as well.



I'm waiting my call for my first treatment. I told her I want to start ASAP so I can get it done with ASAP.

Tazzy

Hello 2012 Sisters.

Juneau... hang in there Sister... like you said, there is light at the end of this fucking tunnel.    That's how I feel now, waiting for rads to start.   We can write of 2012 as one of our crappiest in history.    But we will come out the other side.

Tina... do what is right for you and a decision you can make peace with.   It is so much easier when you have a plan to move forward.... did I say easier ??  Nothing about this crap is easy, but I hope you know what I mean.    Whatever you decide, you are not alone, we are all here for you.

SusannahW:  I think if we all answered you we would all say yes we feel like you do today.    There are days when I am feeling really good and then suddenly its like a train hits me and I just curl up and bawl my eyes out.   Better out than in so have your pity party and feel OK about it... we'll be there with you and bring favours, drinks and food

Wishing you all some happiness and sunshine today and minimal SE's.

Hugs to all xxxxx

marianelizabeth

mrscich, I guess we will be joining the dreaded chemo club at about the same time though you may get to go first since I only meet my MO for the first time on Monday. I think that they will move quickly given the invasions. Gotta love the terminolgy; high grade, invasions, invasive and in my case this week what my BS called a "constellaton of cancers." I have not posted on the chemo thread yet but will be taking a look. What I do know is that there is a huge support team here. Sleepless night for me but am feeling a bit more at peace now that I know at least the general direction I am heading in.

Susannah, I cried for the first time yesterday and doubt it will be for the last time. It was in the relaxation time at the end of my yoga class and I had to rush out the door; not that it was sobbing but the tears just kept coming.

juneau, that is quite the calendar you have for October! 

Thanks all of you for being here as we ride this roller coaster of BC.

Marian 

liefie

Hi everybody,

I'm going away for a few days, and when I return, we will be on page 110 for sure. Scorchy and Juneaubugg, yesterday I read on this site about a 24-year old girl who has stage 4 breast cancer, and the chemo treatments are not working anymore. There is no sense to be made out of that whatsoever. We can only be good to each other, and help each other carry the load, so to speak.

For those of you who feel down, if nothing else will get you down, this will. It is almost too much to bear. Four months out from chemo and three months out from rads, I can tell you that there is life after bc. Just know that you will come out on the other side. When I read your posts, I feel almost guilty for feeling so good, energetic and normal again, but I was there where you are now just a few short months ago. Take heart, sisters, this truly does pass.

marianelizabeth

Thanks liefie, it is always good to center on the fact that this will truly pass. Enjoy yourself wherever it is you are going.

jpmomof3

Susannah. You are definitely not alone with the ups and downs. Seems like a weekly thing for me. So through all the pity parties you need. Rant. And share the happier times too.



Mrschich. Sorry you are in the chemo club. But in some ways its a relief to have a unanimous recommendation. Takes the worry about deciding away. Its not fun but doable.



Ramols. Taxol was such a breeze compared to ac. The only work i took off during taxol was for the actual infusions. Hope you find it to be similar.



As for conflicting pathology reads... My husband is a pathologist and the is at at he margins or not is often a difficult decision. They have to decide to cll it positive if it is within a few milimeters or really at the edge. Sometimes they cant see the real edge clearly because of damage from the surgery or cautery. Cautious pathologists may call a margin positive even though it is borderline because they are less likely to be sued. They will get sued if hey say its clear and the cancer comes back but not if they say positive and he patient gets another sugery and it is clear of cancer on re excision. Its a good idea to have a third person or a tumor baord to review those close call cAses.

MrsCich

Well it's all moving right along. I start chemo on Friday. I sit in the dreaded BGC at 1030. They are calling in my Zofran and Decadron now for me to start the Decadron tomorrow. Labs today or tomorrow.



So I guess since they say you start to lose your hair in the first week or so, I should enjoy this weekend and week with my hair (if im not deathly ill from the chemo), huh? Blah!



Is this when I should be measured and order my wig?

shockd

SusannaW - sorry to hear you're feeling blue, I am having one of those days myself.  My life is pretty good (other than the whole BC trauma!) but my husband goes to work for 2-3 weeks at a time (which I used to do before I got sick), and I am alone.  I have a good support system, but unfortunately most of them live other places.

MrsCich - sorry you're joining the chemo club.  Maybe it won't involve all the yucky side effects, it doesn't always. Brave of you to say "sooner we get started", I went down that road kicking and screaming. 

Tazzy

MrsCich.   Wear something with big pockets Friday as we'll all be in them with you.   Drink plenty of fluids before, during and after... works the chemo around and out the body.   Oh! and beware - Decadron will make you nuttier than a squirrals crap.   I used to be so wired on it.   I felt I could've spring cleaned the house... not that I did, but that's how much energy I had.    What chemo are you on.. do you know yet?  

((((hugs to all)))))

MrsCich

Tazzy, my husband and I are laughing aloud at the "nuttier than a squirrels crap" comment. I will drink water water water. Blah. I hate plain water. Can I add some crystal light in there?



I'm getting Cytoxan and Taxotere. I'm going shopping tomorrow to get stuff. Any input as to things I may need? I looked at the new to chemo thread and it said Pepcid, stool softener, crackers, and some other stuff.

jpmomof3

Mrscich.  My shopping list would be... ambien to counteract the decadron- i didnt sleep for days after that stuff. Have the antinausea pills ready to take if you even feel  little nauseated.  Don't let it build up it is harder to treat.  Water- but i am with you i drink crystal light, doesnt matter.  Pepcid or prilosec for the stomach acid if your doc didnt prescribe it.  i needed eyedrops, my eyes got very dry and i couldnt use contacts while on chemo.  I never got mouth sores but baking soda gargles help with that.

My hair didnt fall out until around 3 weeks.  I buzzed it as soon as the first strands fell though.  I didnt want to torture myself watching it.  It started snowing stubble at about days 23 or 24 after the first dose.  but you are doing different chemo than i did.  and everyone is different of course.

Good luck with your first dose.  It will be good to just get it going.  Sooner started sooner done.

I did my 12/33 rads treatments today.  Still no significant symptoms but I do get sleepy easily.  Though that could be also since I started running again.  And working full time.  And have three kids to chase. yup.

nuttier than a squirrels crap.  love it.

Tazzy

Absolutely add something to plan water...although I wouldn't recommend scotch

You will find what worked for you but here's my input on what worked for me: 

Stool softeners - start taking 2 days before your chemo... so Wednesday.  Eat more fibre too.

Pepcid is good.   I did get slight heartburn, nothing much and it wore off quickly.

Make sure they ice your hands and toes for the Taxotere.  My centre provided iced gloves... they were like big oven mitts, but frozen.   They also put on my toes.  If they dont provide these, take your own bag of peas or something.  It helps protect the nails and also helps with the neuropathy.

Will you be getting neupogen/nuelsta.  This shot replenishes your blood cells and is what gave me my bone pain.  I have seen people on this board take Claritin for that and it helps.  I had t3's.   Ask your onc what they suggest. 

I kept mouth sores at bay by cleaning my teeth after every meal and also made up a baking soda solution I used to swish after meals too.  when I went to see my dentist after chemo had finished he said my gums had never looked healthier.  1 tsp baking soda to 1 cup warm water.

Taxo-tears.... that was the most annoying, irritating se for me.   My eyes and nose would just stream.   That also passed.   With me it was about the 10th day in that it started.  Seemed I swapped my bone aches for the tears.   Time I went for my next infusion... all was OK again.

I got my hair cut really short as soon as I knew I was having chemo and would lose it.   I just couldn't have coped with it coming out in clumps.  For me it meant I was taking control.   And its amazing how quickly I got used to being bald.    I have fun with scarves and hats and match them to outfits.   It is what it is.  

Chemo is hard but as everyone says doable.  And it is.   When my MO told me that the chemo had shrunk my 8+cm tumour to practically nothing I looked back at all the times I felt crap and thought well at least it worked and made it worthwhile.

None of us want to do chemo.   They do it for us not to us. 

I found that once I had my first one the others got easier because you know what to expect.   It sucked that by the 3rd week you are just getting back to some kind of normality and back to the BGC you go.   I also counted down rather than up.  

Remember that they inform you of ALL the se's. We may not get all of them.  I think I was very fortunate that I never got nauseaus or was sick. When they gave me the pamphlets of the SE's I read them all, put them in my folder and said "ok, I am not going to think about what MAY happen, but if it does then I will look to see how to deal with it". Try hard not to dwell on what might happen.

I think that's all.... least all I can remember at this moment... chemo brain really does exist

Dont be afraid to ask any questions to anyone, us or on your healthcare team.  However silly may seem to us.  this is uncharted waters and we dont know.

Tazzy

jpmom.... I look at you doing 12/33 rads and it seems like only yesterday you said you had your first.  Hope its going as quickly for you.  Plus you hair looks great.  Wish mine would fill out on top a bit more.