Anyone Starting Chemo in June 2016

ClarkBlue

Carol AG - I'm SO glad they decided to treat your tumor despite the size. Doctors frustrate me... although I get that this is really a numbers game more than anything and they are doing what they can with the guidelines, etc. BUT mine was 7mm and we found out after surgery that it had already spread to lymph node and created a 2mm devil spawn... Even though it fits the guidelines, it just goes to show that something so VERY small was capable of spreading and that size really doesn't matter...

Here is a link for basic guidelines on this site: http://www.breastcancer.org/treatment/chemotherapy...

-Keely

KNardo88

CarolAG - We have very similar diagnoses. Was it the smaller tumor that was ER+/PR-? The lack of PR a lot of times (or at least this is how it was explained to me) can signify a higher level of aggression. That, plus the fact that it's grade 3, generally would amount to a high oncotype score. My MO didn't even send my 9mm tumor out because he knew there was no way he wasn't going to highly recommend chemo to me based on my "stats". Glad it got sent, whether it was in error or not, it looks like it was a lucky error!

All the best!

Kelly

revnet

Has anyone in the U.S. had any issues with insurance covering your surgery? I just received a bill from surgery, because the insurance is claiming that any of the reconstruction was cosmetic, so this entire surgery now is being deemed as 'not medically necessary'. I DID have lipo during my surgery as part of the reconstruction and received a separate letter that the lipo was not covered, but the entire surgery?
Have any of you had any issues with your coverage due to the reconstruction? (I'm assuming that's the issue. I'm waiting on call backs, etc)

ClarkBlue

Hey rev - real quick - FYI...By law insurance companies have to cover breast reconstruction due to a cancer diagnosis. It's covered under the Womens Health and Cancer Rights Act https://www.cms.gov/CCIIO/Programs-and-Initiatives...

My insurance told me it wasn't covered - until I called my local rep who was like, "ummm that's against the law".

-Keely

Acie

AC number 2 is history! Thank you to each of you who were "in my pocket" today!

revnet

ClarkBlue Thank you so much for this information.

Cody3110

Tooticky - Welcome.

Acie: Yeah #2 is done. You look great.

Revnet: if the insurance company covers a mastectomy they are required to cover reconstruction and they are required to cover surgery on the cancer free breast to give a woman symmetric breasts

Anonymous

Acie,

You look great. I love the hair and that blanket looks so cosy and snuggly!! I am so glad that THAT is now number 2 done and finished with. I hope you have a good night and absolutely no side effects whatsoever.

DD

Coffee-lover

revnet - I think your PS should get involved. They all have people on staff who specifically work with the insurance companies. It is a law but ins might be trying to skirt around it. Also, your PS should have obtained auth before surgery. They need to be involved in the conversation.

I am sooo glad I have ins but they are nerve-wracking to deal with.

Good luck.

Anonymous

Labscientist,

How are you doing after today? I hope all went well and you are home now. Let me know!!!

I got my official staging today as Stage 1.

I have doctor's office tomorrow to keep him in the loop. This is not a hospital appointment but just my family doctor who wants to check I am OK. Then bloods done on Thursday and then hopefully chemo on Friday and that will be 3 out of 6 done. OMG, we are getting there. Not long to go!!!!

Your church project sounds like good fun and certainly will give you time with lovely people and something to keep your brain ticking over. I am starting to feel like an idiot these days as I am doing no work. So have started to tutor my niece with extra history before school term starts. I see her twice a week for 1 and half hours. Then we baked sponge cakes today for the freezer. I have to be doing stuff or I will just turn into a total idiot. I am also going to start knitting again. I am going to make a Snowman tea cosy for Christmas. That will keep my brain occupied. I may even take up some more reading too.

How is the nose today? I hate to think you have that every single day. But at least your bloods are good. When are you planning on returning to work? Are you off til Christmas? I am undecided yet as to when to return. Not sure if I should stay off for radiotherapy too? I think it can make you pretty tired and also can cause some discomfort too. I am thinking maybe I will only return after all treatment is done with.

My date did not happen again....boo hiss...I am bad at this. But it was postponed again. I guess I was a little conscious of seeing him after so long, with less hair and more blubber. Haha...I am still annoyed I have not lost weight. Made some great soup the other day with lots of barley in it:

Before this take 100g of barley and boil in a pan for 10 mins then simmer on lower heat for 50 mins til barley is fluffey.

1. Cut up one onion and dice.

2. Fry in pan til soft.

3. Peel 4 carrots and grate.

4. Peel half a turnip and grate.

5. Cut up two leeks and slice.

6. Add in carrots, turnip and leeks and add with it chicken stock.

7. Add in barley.

8. Simmer all ingredients and season with salt and pepper to taste. Simmer for 2 hours.

BARLEY is great for helping prevent cancer recurrence. So there is a wee soup for everyone. It is the soup we all have over in UK on Christmas day. It tastes soooo nice and is very filling too.

MAKE sure to use organic where possible.

DD

Moondust

LabMom, that hummingbird canyon sounds wonderful! I would love to see that some day! I hope you have a good trip and stay healthy!

Little-Red, it's wonderful to see you! You look like a fun person! Your dog is cute. Your family sounds like a handful!

Revnet, I am having insurance hassles too. Today I just received a bill for my surgery, which was back in January, for $22,000. However yesterday we received the statement from the insurance company for that same surgery, saying we are not responsible for anything except a $100 co-pay, which we already paid. The insurance said they paid the hospital according to their pre-negotiated agreement with the hospital. I am not sure what is going on, but I can see hours of phone time and headache in the near future. Maybe I should have hired an attorney as soon as I was told I needed a biopsy!! Certainly the last thing on my mind at the time. I think these hospitals and insurance companies really jerk us around and it makes me very angry! Maybe, since I'm recently retired, I need a new career as a patient advocate who deals with medical bills.

Acie, you look great and very relieved. Hooray for #2 over and done!

Dolly, I just so happen to have all the ingredients needed for your soup recipe, and I may make some tomorrow! No meat in it?? I'd be tempted to add some beef. I hope you are still feeling good today!

Welcome, TooTicky! I'm glad you decided to post. I have added you to my spreadsheet, and I'll send an updated copy to LabMom and Pepper soon.

labscientistmom

Hey Irish girl/ aka Dolly: Infusion #8 done and finished. Ran the taxol over about 2 1/2 hours. that was good for no SEs during but had a different infusion RN as my usual was @another location today. So, meant delays as they were short staffed, so was 30 min late starting, then there was some confusion of what and how much premeds I got. Then she came in the naked taxol, not added to saline as I usually get it, so I ended up being there for 6 hours total, about twice as long as usual. OH well, my husband was there for most of it, and to help with icing which is essential. I been home since 4pm, been working on packing for our trip on Thursday & taking care of other "to do" stuff before we go. I am feeling sore and dry behind my eyes, the top edge and tip of my nose is sore and I feel tired and frazzled, but no nosebleed since this am. CBC results were good too, so YAY!

As of now my Oncologist wants me off till all treatment finished, chemo & rads, My job disability company wants another eval form him at end of July. My manager has been super supportive that I take all the time I need, but they can really use the help working blood bank on my every third weekend on Pm shift. I gotta see what he says. I think the best option to get through this healthy and whole is to wait to go back till I am all done. My energy levels are not predictable, and If i get sick it will delay my treatment. SIGH, I do miss what I do, but its not a clean place to work. possibly go back some during rads.

My son starts 7th grade in the middle of August. So my gradual focus after we get back from our trip and get thru VBS will be about 3 weeks to prepare him for school. He is doing summer bridge daily lessons, just a couple pages a day in different subject to review 6th grade and introduce stuff from 7th grade.

Here's a pic from today:

boobsBgone

You guys are so amazing.

Acie: you look cozy, are those fuzzy slippers? i love slippers! mine are black (covered in actually cat hair due to my house) with a cat face on them. ugly but comfy.

Labscientist: my name is to make light of everything, laugh if you need to - i do all the time. my hubby laughs that my boobs tried to kill me and wants to make a shirt for me (i said no), abbreviate it to BBG, that is fine, but always laugh please. your church family sounds great and glad they are there for you. we all need a little extra help and encouragement for sure.

Little-Red: you look amazing, hot momma for sure! and your pup, awe - high cuteness level! As for family - cannot live with them and cannot trade them in (I tried - kidding). most of the time they are okay, just every so often they forget their humanity. I was talking to my dad the other day - he finally called me after 3 weeks, just to cut me off as I was talking about my tx. said he had another call. well, my parents are going to get a dose of bitchy reality - i am not taking shit from them anymore. he'll find out when he comes to visit (that is what he said he was doing - coming to visit me) in Oct, that I am not going out of my way for him. Hubby reminded me he came to town last year and decided not to see me but told me afterwards he was here for a week but did not see me. (I am in NV and he is in CT). So, my outlook is about me (as you all confirmed for me) and I am not exerting any more effort for those who show they care little about me. and ya know, I am totally okay with my decision. my sister-in-law (oldest bro's wife) said its about time I stood up for myself. glad we are very close! I have who i need in my life and love them with all my heart!

Tooticky: welcome, please always know you are encouraged to post - we are all in this together. our sisterhood! everyone helps everyone and the support is overwhelming. glad you are here.

Pepper: your kids are too funny. thank you for the smile! love the pizza hat!

exhausted today from overdoing it yesterday, so going back to the couch!

pleasant dreams and restful sleep!

revnet

Moondust the insurance companies seem to be taking us for a wild ride!

I talked to insurance today and the entire double mast surgery was denied as 'not medically necessary' as 'cosmetic' (the double mast and chest reconstruction done at the same time). I am not getting the 'normal' reconstruction, in that I am still flat chested and have a male chest now with and areola/nipple grafting instead of new breasts. That should not matter though, it's still my chest reconstruction and actually probably quite a bit cheaper for them anyway.

There was pre authorization done, but apparently the codes they gave the pre authorization for, were not the same codes that that were submitted. *sigh* So tomorrow I get to call my surgeons and let them know that the insurance company is coming back to them now for medical records

The $25,000 bill I received today really freaked me out and with chemo #2 only a couple days away, this is not where I want to be placing my energy now, but it is what it is and hopefully this gets resolved without much more involvement from me.

Thanks everyone for the information.

Anonymous

Labs, (Labscientist)

Love love love that picture. You are looking great and healthy! Poor wee lamb having to sit with your hands under those ice packs. How on earth do you manage to Facebook during infusions haha??? Six hours is a longggggg time. I sometimes feel they faff around too much on these wards. I know that they have to double check everything and go slowly with everything, but my last appointment was the same. I was in from 11.30 to 6pm and my infusion only started at 2.30, so a lot was hanging around and waiting for results from labs etc.

I am glad you had hubby there to keep you company through it all. In the UK we generally do let visitors in on the cancer wards. All to do with infections I suppose, however I have been able to have my mum in on all of mine due to the fact I am diabetic and she is able to spot a hypo happening immediately even before I know. So it is nice to have her with me.

I bet you are looking forward to your holiday. Is it friends you are visiting? Or is it family? I know I don't have to tell you this as you are thoroughly prepared and always have been since day one of this, BUT take everything you might possibly need with you in the car. Even a first aid kit!!!! I know you will. But just always good to have a reminder.

I am glad to hear you are still planning on taking it easy and not returning to work til you are fully back to normal. I am going to do the same. I had planned on not being in work til after the chemo was done, but now am thinking that I will also take the time off during radiotherapy too as it can make you pretty exhausted from what I have heard AND we have all had enough badness in our lives in the last few months and so need to take care of our bodies. I am planning on returning to work just before Christmas. I think you are similar to me in that your working environment can be pretty unhealthy and viruses around all day, so good that you are staying away.

I was at the family doctor today and he had to look up my file to convince himself I was actually ON chemo haha....love that. It made me smile. He said I looked 'thoroughly healthy' and to just keep doing whatever it is that is working so well for me. That is always nice to hear. I am getting my mind mentally prepared for Friday and so will be thinking this way this time around:

1. I hate that bloody shunt in my hand for hours - but it gets the stuff in me and it's needed to keep me living a good and healthy life AND there are only 3 more shunts to go after that one!!! So it's all fine really. PLUS I got the thumbs up for being a stage 1 this week. That helps me too!

2. The cold cap makes me cry...it really does...BUT....My GOD it has worked it's wee socks off for me and my hair has done well so far, so that being said, I am going to try to not have those first 10 mins of tears this time around and just celebrate the fact that I have had 6 weeks of hair and hopefully another good 3 weeks of it. Doctor today was amazed at my hair and said he would never guess I was doing chemo. The cold cap has been an amazing thing for me and has been worth every single hour of freezing head. Thank you Mr Paxman, I love you!!!! I love that you invented this machine for women just like me.

3. I hate the waiting around - but again I am going to read this time around and maybe even watch a film on my laptop! I might even let my mum go and get a cup of tea!!!

4. Our PM is leaving Downing Street today. He has been a good leader and it is sad to see him go. I hope our new one does a good job and protects our NHS. I am hopeful she will. It has been good to have such excellent treatment and NOT have to worry about paying for anything!!!! I will stand up for my NHS til the day I die! It has been a protector of the people for many many years now. I am sooooo lucky to have it today when I need care and treatment. This will also be in my head as I walk in there on Friday....just that I am so so lucky to have such excellent care.

I hope you are doing OK and get all that packing done. That is a good sign, if you are able to attend the to the tasks like that.

You are looking soooooooooooooooooo soooooo good Labs. You hang in there Mrs. I love that you started out with never showing a pic on your avatar to now posting pics of in hospital...haha. Fabulous. Celebrate that beautiful smile and skin. And am I imagining things or do you still have curly hair in that pic?

DD

PS why Irish?

Anonymous

Boobsbgone,

Sorry to hear about the lack of attention from your own father. But dads can sometimes be rubbish, just because they are MEN haha. I think you are doing well to always put yourself first though and lucky that you do have ONE wonderful man in your life - your husband!

Don't let this bother you for a second. Keep going and doing your thing. Sometimes the very people we think are going to be there for us fail us. I have been surprised by ONE very close friend who just went off the radar after my diagnosis and I have since cut off all ties now. We are all adults and no excuses in my mind are good enough. I have no time for fairweather friends and if I am OK for you when perfectly healthy, then I should also be fine for you, when needing some additional help and not so healthy.

DD

CarolAG

Knardo88 and Clarkblue:

Thank you so much for your replies.

My two tumors were:

IDC 9 mm grade 1 97% ER 4% PR oncotype 19 and

IDC 2.5 mm grade 3 40% ER PR- oncotype 39

Both HER2-

Both were in right breast. The smaller one was found incidentally after mastectomy.

In 2006 I had IDC 1 cm in left breast and had mastectomy. It was ER+ PR+ HER2- with oncotype score 8 so I had no chemo and took tamoxifen and then aromasin after ovaries removed in 2010.

I sure wish I would have just opted for the double mastectomy back then.

Anonymous

Carol,

Is this a second time for you with breast cancer? Did you have a lumpectomy and radiotherapy only back in2006? It's good that it's a local recurrence though!!!

When did you start chemo

Acie

labscientistmom - I am very curious about the icing. Has it worked? Why did you decide to do it? are you doing it yourself or does your nurses help? Yesterday at my AC the nurse mentioned they are doing a study on Taxol and icing and that I could qualify to participate under certain conditions. I will start Taxol at the end of August. Any other thoughts are greatly appreciated.

TooTicky - welcome! so glad you decided to post. Being able to share, chat and learn here has been great for me. You and I have similar diagnosis. There are a few of us triple negatives (TN) on here. lanscientistmom, littleredcorvette, and lillyp come to mind. I know I have lots of questions and concerns about TN so feel free to share yours plus, what you've learned along the way.

Triple neg sisters - I notice most of your started with Taxol. I started with AC, Taxol to follow. I wonder why. Also, how may of you had surgery first? My team recommended chemo before surgery (neoadjuvant), which freaked me out at first. This is apprently to shrink or hopefully, even kill the tumor, and I suppose it gives them a way to determine if the chemo has been successful.

The snuggly blanket and socks were a gift from a friend who also did chemo, so they're perfect.

Acie

Shaved my head today. So relieved. Not sad at all. I think my hubby did a great job (and now we match).

ClarkBlue

CarolAG - Okay so this is not your first rodeo... I think we all have many regrets in life, but the key is not to linger on them, it doesn't do us any good. Looks like you are in good hands now and have a good treatment plan going (same as mine). How are you doing with the SEs so far? Anything giving you trouble in particular? I have some questions about the ovary removal and AI... whenever you feel like discussing let me know - I know that Pepper is researching that soon as well. I have an appt with Gyn on Friday to discuss it.

-Keely

ClarkBlue

TooTicky - Welcome! Man that sounds like a harsh treatment plan... you doing okay??? I like the design in the back of your hair... I wish I had that much to work with hahahaha

-Keely

Coffee-lover

Acie-you two are so cute. I love the matching big smiles.

Here I am getting ready for #3 of AC. One more to go! Have a good day everyone!

bbbb

Hair is gone! My daughter shaved my head last night and it was totally a relief. No more hairs falling everywhere. There were no tears - we laughed and remembered that this means the chemo is working! Surprised how cold my head is now! I am hot natured so maybe this will help me cool off a bit! Two kids at home now are not the least bit affected by bald (or almost bald - lots of straggling hairs left) head. Waiting for reaction from hubby and other two children when they return from out of town! Going tomorrow for wig styling so I am a bit apprehensive to venture out today before that is done. I think I will just stay home today and relax!

Acie - you look great - yes it was a relief to finally let go of the hair!

Coffee- Lover - best wishes today you are so close to being done! YAH!

Lab scientist - hope you are doing good today after treatment yesterday! You are such a good mom to review with your son during the summer - I am a teacher and I don't ever manage to review with my own kids during summer! So glad you are able to participate in VBS. Our VBS was in early June, before my first treatment, so I was able to participate without any problem. Wishing you a wonderful trip!

Hope everyone has a great Wednesday - Do something that YOU want to do today!

lilyp6

So proud of everyone here. I can't help it - especially my fellow "baldies." I have so many responses, but my lunch hour is almost gone, so..

Labscientist: You are absolutely adorable in that chair.

Acie: Re: 3N girls here, I did start with the Taxol, and I'm glad that it went that way. Compared to the A/C, which is coming next for me, it seems like it is more mild overall. I have an idea of how everything works now, and how the energy and well being come in cycles. I'll be ready for the harsher stuff when the time comes. At the same time, I can't feel my tumor anymore, so I'm thrilled with the neoadjuvant therapy. My surgery will be in Dec/Jan. At this point I'm leaning toward a double mastectomy, for symmetry and peace of mind, even if it's not medically necessary.

Finally, I posted this in FB, so adding it here as well.

OK, LGFB workshop: I had been looking forward to this for weeks. I NEED to understand how to draw eyebrows, put on false eyelashes, do better with my wigs, and so many other things. I have also been trying to reach out to other women going through this, at my Kaiser.

We were 7 or 8 in a room at Kaiser with little mirror setups in front of us. 2 nice ladies welcomed us, and spent a lot of time trying to get a video running. In the meantime, we were scrambling for info from each other. Eventually our host explained that she had been doing presentations for the nearby Vietnamese community, and was a PROFESSIONAL MAKEUP ARTIST-which she unfortunately repeated about 25 times.

The short version is that we needed something a little more interactive, and she was bent on doing a more formal lecture. I did my best to be polite and attentive, but we cancer girls were getting on so well, it was really difficult, especially once we started unwrapping our swag. We all got different donated items.

Eventually the poor woman kept repeating, "only one conversation at a time...and "LISTEN"...and "I am a professional makeup artist." I felt like a junior high girl getting sent to detention and trying not to giggle.

We never got to false eyelashes. There weren't any. We never got to wigs because we ran out of time. As I said, the products were incredible. I'm really glad they do this, but we definitely had different agendas that morning. I didn't quite get what I was looking for. But I did get everyone's contact info, and connected with another triple negative patient from Birmingham, so overall, it was lovely. Oh, and I left there with enough makeup on my face to go on camera. I took the picture shown here on the next day.

Acie

lilyp and coffee-lover - you guys look great! Isn't nice that we can share this with each here. I really appreciate you guys. coffeelover good luck with number 3.

bbbb - so glad you had a good experience shaving your head. mine is cold too! good thing I had some beanies here already.

Lilyp - I am glad to hear you are leaning to a double mastectomy because that's been my thoughts all along. I kind of feel like they keep talking about minimizing surgery and lumpectomy but really I've had no serious discussion about surgery options yet. I do feel that with TN its the piece of mind that I will need, and of course I am interested in symmetry and a good appealing outcome. My best friend had a double and she whipped off her blouse in my kitchen to show them to me. They were spectacular! Ha!

Sorry to hear about the LGFB workshop I am also looking forward to mine. Hopefully, my "professional make up artist" wont be so worried about her credentials. I need a lesson on false eyelashes bad. I am off to youtube to watch some videos. I found a couple of good eyebrow videos there. I also learned how to tie a headscarf like the one I wore today on youtube. I will post links if I find anything worth while.

Heathet

It's so wonderful seeing all these lovely pictures! I think we are rocking it out shaved dos! I haven't shaved it all off yet, but the shedding it pretty heavy. A girlfriend offered to come over this weekend to shave it and I told her not to worry ! I think the rest will be gone soon ! My parents came over today and I think they were a little shocked. My mom says I remind her now of her mother, I said how and she said big forehead - she was being funny. They brought us a big bowl of goulash so I'll have meals for the next couple of days.

Anonymous

Heathet,

You look soooo young in that picture. Your brows look like they are still going strong. It's weird how we get used to our hair becoming less and less each day. I don't wash mine for a week but each week I get a fair bit of 'clumpage' coming out, after each wash. I now dread washing it hahha...

I hope your goulash was nice. And bad mum!!! She sounds a bit like mine, just says things as they are. Only your mother will ever tell you the total truth. I bets she is mighty proud of you though for doing so well with all of this chemo and operation stuff.

D

bbbb

Victory! I wore my wig to church tonight! I almost didn't go because I didn't feel comfortable in my wig yet, and then I thought, NO, I AM NOT MISSING LIFE BECAUSE OF THIS STUPID CANCER! So I put on the wig and went and it sure did feel good! Thanks to all of you I have learned to not let hair loss keep me from doing everything I want to do! Thanks ladies!

labscientistmom

everyone: flyng by, still havn't finished packing. don't feel too bad today, just as usual not moving as fast as before chemo & chemo brain fuzzies make ot harder to concentrate, al you all know.

Acie: I will write more on icing tomorrow when I will have travel time to post. My oncologist says City of hope does taxol first for triple negative cause its very sensative to this chemo. I was diagnosed thru my HMO medical group, & their protacol sent me to surgeon first after biopsy. I Think they also wanted to move fast as it was very fast growing and path report showed very abnormal grade 3. I was thankful to be slotted into surgery only two weeks after diagnosis.

Dolly: sorry my Scottish sister, chemobrain strikes again. I am Irish, not you. Saw your new PM speech, hope its a bettr deal than we are gonna be getting. Yes, my hair is about 1 inch long all over now. Still coming out everyday but much more managable and I am hoping to avoid the breakouts & ingrown hairs.

More tomorrow, love & hugs to all- A