January 2013 chemo group

Skigirl72

yes that is my birth year. I will be 41 in march. Shannon you are about 2 hours away from me. Lunch when it warms up???

I have a twitchy right eye only. I thought it was because of a low calcium level. I take extra now so maybe its an SE.

We have about 8 inches of snow since 10 am. and it has no signs of letting up! this is fun!

smethot

The snow is out of control.  My husband went out and shovelled 3 hrs ago and you can't even tell...it just keeps coming and coming...had to clear a pug-pee place in the back yard so the poor things could do their business...snow was over their heads!  So i'm sending the rest of it all your way, Debbie...good luck!

I'll be 41 in July and i think getting together once we're through treatment and able to make plans again in the warm weather is a fine idea.  I mapquested 3 hrs...looks like our halfway point is somewhere in between Niagara Falls (lovely spot) and Buffalo (not so lovely spot).  We will definitly plan a road trip.  I'll be the short chick with the brush cut!  woop- woop.

Neulasta went just fine.  Ate a yummy-ass sammich for lunch and ramping up my water this aft.  Get to ditch the steroids for the rest of this round (yee ha!) and hopefully my claritin helps avoid bone pain...and i run away from all of the other SE's too (figuratively- not literally.  i suck at running...especailly in snow.  i am built too low to the ground for snow.  i leave butt-hole tracks in the snow.)  I am Super Positive Shannon today...let's hope it lasts.    xoxox

smethot

Forgot to add- got my receptors and need some feedback, oh bff bc community.  I am HER2- and ER/PR +...but ONLY 5% + on the ER & PR.  I only talked to a nurse (who was very nice but not my onco-doco) so i wanted to know...what does that MEAN?  Nurse thought Tamoxifin (in a wtf kinda way) and mentioned "maybe other protocols" because i'm pre-menopausal.  She was WAY more interested in talking about chemo-induced menopause (i think that was more her comfort zone) and i'll obviously have a billion questions for the onco-doco once he's back from conference but if anyone knows, what does 5% ER/PR + mean and what can i look forward to moving forward after chemo & rads?  thanks...xoxox

kingboo

In chemo room.  Just did 1 hr pf pre-chemo banadyrl and decadron.  Now the 2-2.5 hr of T, follow by another 1hr of C.

So far so good. Getting sleepy, must be the banadyrl.

It is hard to type with one hand.lol

hope49

Shannon, good luck with the BRCA...hoping all negative for you!  As for the ER/PR, from what I understand they do the Tamoxifen even with a low % as it can still be effective...mine was highly ER pos and biopsy showed PR pos but final path results showed ER pos and PR neg...MO said no worries as long as one of the 2 was positive.  In spite of more fun SEs with Tamoxifen, it does seem to be a great drug more recent on the scene about 15 years maybe...typical protocol is to stay on it for 5 years although I've seen a lot of press lately that they think 10 years may be better...once you go into menopause they switch you to another type of drug.  I've also heard there is a blood test that can show how well your body can metabolize Tamox, so since you're a lower % maye that's worth checking into to be sure you'll get the most benefit. NOt sure what 'other protocols' the nuse may be thinking of...it will be intersting to hear what you find out.  Hope the snow lets up soon!  Just a little here in Chicago, heading into a rainy cold weekend...

Kingboo - you're off to the races...death to the insurgents!  And hopes for a smooth landing for you

Anonymous

Jubby, ah yes the infamous "Well, we know you and your mom had BC . . . but . . . . we don't know why." Well no shit sherlock. Does anyone? If anyone had even the slightest clue non of us would be here! BINGO!               YATZEE! IS THAT YOUR FINAL ANSWER? DING-DING-DING SURVEY SAYS…Cancer.

Hope49, did the gentleman you were winking at pass you his number? LOL at your comment!!

Anonymous

Those of you that have lost your hair . . . did you loose it all? I still seem to have this weird fuzz-buzz going. Now I don't even have strays that the sticky roller will take off. DH keeps saying I should just shave it, but I was worried it would irritate my scalp. Although the fuzz-buzz irritates me enough. I expected that if there would be additional hair loss with my other body hair or what was left on my head that would happen today, 14 days post chemo #2 since it started 14 days post #1. But nada. Knocking on wood, although now I don't know whether it was the BJ's that helped save my brows and lashes or if I was just never meant to loose those. Ok chemo karma god's don't come knocking now. I'm okay with it, really!! I did finally break down and pluck the stray brows that I was afraid to touch before, thinking they were growing on a root system and didn't want to tempt the chemo karma gods. It was strange though. Not the typical pulling. Just kind of came right out without a tinge of sting, like they were just sitting there with nothing to hold onto.

hope49

 

and we thought we had it bad...at least we have hands to draw with!

Skigirl72

I have weird fuzz and a few holdouts. I did shave it a few weeks ago and some grew back. I'm leaving it alone. It doesn't itch or hurt anymore so I'm not touching it. Some did come out this morning in the shower. It happened just like the last time. 14 days after tx#2. If you are going to shave, BE CAREFUL. and use LOTS of shaving cream. My DH did it for me and he used a real light touch with the brand new razor. He didn't want to nick my scalp.

duckiedee

Hi Ladies!  I don't post on these boards a lot, but I have benefitted from reading your advice so many times. I will try to do a better job of contributing what I can to repay the favor. I actually started chemo on December 14th. Great Christmas present, huh? So I go back and forth between the December and January groups. You guys are a spunky group, I must say, and have brought me lots of laughs. I love that!

Regarding the teary and twitchy eyes, I get that too. I was told it was just part of the taxotere SEs. Sometimes I'll be talking with a friend and tears just fall at random. Then I have to explain that I'm really not crying - it's just the drugs. Weird...

And, in regards to hair, I lost most of it really quickly around day 17. But I did notice that the front and top left first with just a fringe above my ears and on the back of my neck holding on the longest. I had treatment # 3 on January 28th, and I STILL have a few straggly hairs holding on to my scalp for dear life. What's funny is that it is only my coarse gray hairs that are there. (I'm 54 yrs old, so - yeah - I've earned these grays.) All my "regular" hair left in a hurry but these gray ones are incredibly stubborn. Of course, the white hair blends in with my white bald head so at least they're camoflagued!

Regarding the heartburn, I had a terrible time with that during the first treatment. It was so severe that I would nearly double over - I was so uncomfortable. So, by round 2 my doctor prescribed protonix (pantoprazole) 40 mg. For me, it works beautifully, and I take one everyday. THere have been a few times when I missed a dose, and inevitably the heartburn would return. So I just take one as a matter of fact now to prevent any recurrences. My doc gave me enough refills to last the full 6 rounds of chemo. I know lots of folks swear by OTC meds like prilosec too. But I just thought I'd share this in case anyone was looking for something different.

Thanks for all the advice, inspiration, and laughter I have found here. I think you are all winners. Hang tough, ladies!

Grace533

I am on 4 mg dexamethasone a day. She had me on 8mg but first chemo I misundestood and only took one a day and she said that was ok for the rest since they put it in the iv .

Anonymous

Skimommi~Most of us on here know what you mean when you refer to BJs, but the newbies might think something entirely different. Lol



hope49~My aunt had BC in 1993. She passed away in June (BC free) but I never knew what type she had. I only knew that she had her left breast removed, went to the hospital everyday for a year (including Christmas) for a shot. I guess it was a type of chemo, as she lost her hair and wore a little white sailor hat. She also took tamoxifen for 5 years so it must have been estrogen receptive. But that means tamoxifen was around 20 years ago.



I took care of her in my home the last 3 years of her life, because she had sustained a bad fall in her home. She passed away in June. I was diagnosed a month later. I have so many questions I'd like to ask her now.



I do know, she had been deemed cured. After the first 5 years, all her tests were clear. She was 86 when she passed.



Blessings

Paula

Jubby

re hair.... We have a black lab, border-collie cross who is forever shedding fur. With small children it has been the bane of my existence – think black fur all over the house and crawling babies. We also have a white kitchen floor.  ARGH!!  I am therefore anal about vacuum cleaning. I remember someone telling me to vacuum the dog.  Well the dog will never stay still to allow me to do it but today I vacuumed my own head! Yup, how’s that for freakazoid?  And… it helped.  Just sucked out the ones that were sitting there waiting to shed.  If I pull on my hair, more falls out but I don’t have those fly-aways hanging there.  So there ladies, tip of the day – vacuum your bonce! Wouldn’t recommend having the vacuum foot on when you do though! LOL.  My brother is coming around tomorrow with his clippers.  Buzz cut is going to beat the hell out of cleaning up my hair as well as the dog’s.   

martha323

Hope, I love the photo - laughed out loud - just what I needed tonight.

Wishes and prayers for all to have a peaceful night ....

Martha

Anonymous

Jubby~I love the vacuuming idea! I have really thick nails on my big toes. I've no idea where to buy a set of nail clippers big enough to cut them, so I started using our dogs Pedipaws (as seen on TV). I took the guard off and just used the sanding wheel. It worked pretty good, but now I can't find anymore of the little wheels, so I have to use my husbands dremel. It's faster, so I have to be careful, but it works great.



Blessings

Paula

Bryona

hope, you go ahead and pretend it was an SE and that you weren't actually winking at that man in the chemo lounge. We know the truth, and we still love you.

Shannon, I was going to answer your question about ER/PR+, but Dr. hope49 has already done a lovely job of it. They did release new study results in December saying that 10 years of Tamoxifen is better than five, and I have a friend who finished her 5-year course in 2011 and has just restarted for another 5 years. I'm expecting a 10-year run. What can I say? Just can't get enough of this cancer treatment sh*t. Woot woot.

kingboo, hope it all went well today, and minimal SEs this week. Mwah!

skimommi, my hair is just like yours. It's stopped hurting for the most part, though. I can't decide if I should shave it off or leave it, mostly because it ain't perzactly pretty right now...

Hoping for minimal SEs for everyone, and for sensible amounts of snow and no power outtages for our lovely girls in the great white North...east.

LeeA

My scalp stopped hurting at some point.  I never shaved my head completely.  I can tuck some stray pieces behind my ears but I have bald patches.  

The word mange comes to mind. 

Wishing everyone a good weekend where you are in location and in your treatment cycle. 

Skigirl72

YAY the snow stopped. We have about 16 inches on the ground. I'm up by the lake and we got hit hard. 10 miles to the south only got 5 inches. lucky bitches... Anyway, I hope all of you in the more northeast than me are holding it together. you guys are getting a whoopin from mother nature. Now for the big dig out!

My MO told me 10 yrs on Tamoxifen. Yup I cant get enough of this cancer drug thing either!

whats another pill in my daily vitamin thingy...

Sandra60

Paula - did u say if u don't ether have to he rhe neupogen or neulasta shots that is a good thing because it leasesns the chance of leukemia down the road - or visa- versa ? I've not had any of those shots her bc my counts are eithe normal or high. Just wondering where u got that info ?

Anonymous

Sandra~What my onc told me is ...Getting AC every 3 weeks instead of dose dense every 2 weeks lessens the chance for leukemia down the road. Since I get it every third week, I have an extra week to bounce back, so no need for Neulasta or neupogin.



The shot has nothing to do with leukemia.



I did some research and found that Robin Roberts on Good Morning America had AC in 2007 for breast cancer. This past summer she was diagnosed with pre-leukemia. She had a bone marrow transplant and is doing better. The pre-leukemia was caused by dose dense AC, but that is a VERY RARE OCCURANCE!!! She is returning to GMA in a couple weeks.



Blessings

Paula

macyhen111

Soteria thanks for the info on Robin, I have been wondering what chemo caused her problems. That was a great idea to use the pet nail thingy on your toe nails, wish I would have thought of that before I threw mine out, cuz the dogs wouldn't let me use it on them. I have one thick ads nail on my big toe.

smethot

i find all the studies wicked confusing.  Seems like with all other "experimental" or "controversial" issues, you can find info and/or studies to back up whatever position you find more favourable.  My MO opts for AC-T (or another combo only available in Canada) dose dense for younger women becasue in his experience, a) we can handle it (with a Neulasta chaser) and b) there are studies that show a significantly lower recurrance rate after dose dense.  He (and the studies i went and looked up) said that dose dense hits any stray bc cells HARD and doesn't allow them time to recoup and start to re-grow before they're hit again.  "Pounds the shit out of them" was his phraseology.  The combo of AC followed by T is based on the assumption that IF the little buggers somehow make it through dose dense AC and are still semi-functional, the T hits them with another whallop of a different chemo that they just can't recoup from- death to cellualr insurgents.  The dose dense is MO's weapon of choice because the shorter the interval between chemo hits, the less time the bad guys get to circle their wagons and prepare for the onslaught- kick 'em in the balls when they're already down.  The studies were pretty compelling.  And you get done your chemo faster- i'm 8 treatemnts dose dense in 16 weeks (fingers crossed).  MO also said that dose dense was not possible before the dawn of Neulasta and Neupogen- our bods just can't cope on a two week cycle alone. 

I guess ladies, we have to look at ourselves as pioneers/guinea pigs.  The treatments we receive and the results our docs derive will help other women receive the best possible care in the future.  Its that whole concept of "practicing medicine" i guess.  Onwards and upwards and let's continue to kick insurgent ass...by whatever means has been prescribed for us.  xoxoxo

martha323

Good Morning! We were lucky here in central NY - only about 5 inches of snow AND the sun is shining!! which is a fleeting occurance duing the winter in these parts. I hope that any of you east and north/northeast of here are faring well with a lot more snow and wind.

I'm in a clinical trial (B-47) for women who are HER2-low and was randomly accepted into the trial arm to receive Herceptin for a year. Herceptin (every 3 weeks for a year) will start when the weekly Taxol begins. I read the most important parts of the protocol, met and talked with the research nurse quite a few times, and asked a lot of questions before signing the consent form. A pharmacist friend and another chemist friend who have xp with clinical trials have kindly offered to read the entire 150 pages! Anyone else in this trial?

I had labs -a finger stick - at my clinic on Thursday, a week after my first afternoon at 'the bar', and the policy is no news is ... well, don't worry news. They call if the counts are toooo low, I guess. Is that approach common?

Wishing everyone a peaceful day, Martha

InspiredbyDolce

Ladies - this is interesting!

Do you all know that researchers are looking at Dandelion Tea as a possible step to kill cancer cells?  Here is the article, and it references Memorial Sloan Ketering as being interested in it as well:

http://www.cbc.ca/news/health/story/2012/02/16/wdr-dandelion-tea-cancer-killer.html?cmp=rss

Also, I didn't read the link.  What was it about seeds and fruits?  I eat dried apricots and dried figs like all day long.  In fact I will probably need to cut back, I think I've gained a pound on them.  Are these okay for me?  I get so confused!

Anonymous

Martha~I was supposed to be in that Herceptin trial. I'd already been over everything with the researcher and signed the papers. Then my bone scan came back showing more activity in my left shoulder than the other places where I have arthritis, so I had an MRI, which was supposed to take 25 minutes.



After lying on that hard table for 30 minutes my spine (degenerative disc disease) they pulled me out, said they needed to start an IV for contrast dye and put me back in for 30 more minutes. I was in so much pain by then I had to refuse. I could barely walk out of there.



So, the radiologist would not commit to the fact that there is no mets in shoulder. That would have made me stage IV. You can't be in the trial if you are stage IV, and mine is inconclusive. My onc, nurses, researcher, and I believe it's just more arthritis, as I have absolutely no pain, and I've had bursitis in that shoulder in the past.



Blessings

Paula

Anonymous

Shannon~I hope you're still feeling good after your chemo. How many days has it been?



Some of the ladies have told me AC 4 was easier on them then AC 3. I'm so praying thats the case with me.



Blessings

Paula

smethot

Today is day 3 and still feeling good.  Had my Neulasta yesterday and so far...a-ok.  I made the mistake of having a small Tim Horton's coffee this am and it made my heart race BIG TIME for a couple of hours but back to normal now and going strong.

As to the dandilion, i posted elsewhere on this topic.  The University of Windsor is doing a study on dandilion ROOT tea- created a full stop on terminal stage 4 other types of cancer...not breast...pretty amazing stuff.  There is another study on dandilion LEAF tea that is applicable to breast and prostate cancer.  ROOT has no impact on bc but really interesting results with LEAF and bc.  I'm planning on starting to take it AFTER treatment...has been show to inhibit and/or shrink growth on bc cells...and every little bit helps.  Look it up...pretty interesting stuff...

powermom

Dickiedee, Hello from a fellow Georgian. Haven't seen many of us around the boards. We are also the same age, triple+, and some other similarities. Are you actually in Atlanta, or just the metro area?

duckiedee

Hi Powermom - from Marietta actually. I just say Atlanta cause it's easier. :-) Looks like you started chemo a week before me. You doing 6 rounds too - every 3 weeks? How have your side effects been? I am a week away from treatment #4 and still don't have my taste buds working right. Usually it sort of gets normal again after about the first week, but it's been much slower this time. Maybe it's the cumulative effect so I'm not bouncing back as quickly. I've had a few bothersome effects but have been fortunate to escape the really nasty ones so far. So I'm thankful for that. Hope you are doing well, my fellow Georgian! :-)

Amrdbit

Hope49, just read your comment about the connection between nose hairs and runny noses. I wouldn't doubt it since my hearing suffered a bit after chemo 18 years ago. I never thought about losing the little hairs inside my ears and how that would affect me... but it did. Chemo.... strange, strange, strange. LOL!