TRIPLE POSITIVE GROUP
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I think I'm having a small panic attack.. All of you sound so happy and upbeat (the only way to be), but I'm not feeling it tonight. My last chemo treatment is this Thursday. I did it! 6 rounds! So why am I freaking out? Shouldn't I be rejoicing? All I can think about is -- what now???? Do I wait for 5 years for this crap to come back? Did I do the right treatment, regimen, surgery to keep it from coming back? I almost feel like chemo has been my security blanket for the past 5 months and now I have to let it go. Don't get me wrong, I hate chemo! My body has had enough! I'm just so sad and scared right now. Is this normal???!!! Maybe I should break out the Prozac.....
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Oh nuncie. Yes it's normal to worry about what comes next. We focus on just getting through and then wham, what now?. But what you do now is recover and get your happy back on even one day. Then you work at it til it comes back as often as possible.
Football nut I hated the tape from having the port accessed. Itchy!!! But at least it will come off after tx tomorrow.
Linda that is an awesome hat! Bet the nurses got a kick out of it. Gotta take what fun you can.
Much love to all
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nunci - totally normal. Finishing active treatment has been documented as one of the most stressful times associated with cancer - for the very reasons you describe. My BS was participating in a study with the USF School of Nursing and Moffitt Cancer Center for those exiting active treatment. I was recruited for this study as I finished chemo - it was great timing. It was a mindfulness based stress reduction study where we learned about meditation and living in the moment, quantified by blood and saliva testing for the stress hormone cortisol. This type of meditation focuses on not looking back at the past, not looking to the future, but living in the right now. Understanding what you can, and can't, control, and how to deal with that. Here are some links, you may find the book valuable.
http://www.mindfullivingprograms.com/whatMBSR.php
http://www.amazon.com/Full-Catastrophe-Living-Wisdom-Illness/dp/0385303122
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Nunci as others have said your feelings are normal. I know after my last chemo I felt like shit… and that was 2 weeks before my 50th birthday. Did not enjoy my birthday meal. Also as far as security, first of all you will still be doing the herceptin. So that should help a bit. I assume you will be doing some kind of endocrine therapy (tamoxifen or AI). So that also should help. But as time goes by and you are still NED you are a lot less scared of it coming back. You do know most of us early stage make it and go on to live our full lives. There is a woman in my building that is a 30 year survivor. Another diagnosed just after me (also triple +, same regiment as me, but stage III) that is doing fine and another diagnosed before me that is also doing great).
Give yourself some time. Also here are my infamous speeches:
seat belt speech:
You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.
also
shit happens speech:Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.
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Hello All!!!
I awoke this morning with discomfort from the port. Yuch! I
actually felt a bit nasuous last night - perhaps from the sedative. I also did go through an itchy session from the tape which drove me nuts! Then I had to watch my NY Rangers collapse during the hockey game! Gee, there is only so much that I can take!! lolI
called my Nurse and asked for painkillers as Tylenol Extra Strength just
aren't cutting it so I have to pick that up at some point today.My first infusion is scheduled for noon. DH is on the way home from work to pick me up. For
breakfast I had oatmeal with bran buds and a banana. I'm bringing 2
hard boiled eggs with me plus an apple and celery plus 2 bottles of
water. I'll try a salmon sandwich on all grain bread for dinner with
dark lettuce. I already drank 2x500ml this morning and am working on a
third!!I hope that the chemo goes well today and that there is no
pain. Yesterday when they were drawing blood from the Port, the nurse
mentioned that it was difficult to flush and that she had to push the
port up to facilitate the process. Why must they mention things like
this? It only made me more anxious. The process didn't hurt but now I
fear that it will today and was only pain free bacause I still had some
freezing let over at the site.I'll do my best to update timely.
Have a good day all!!
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footballnut the only time I felt discomfort with the port is when the first stuck the needle in and that also depended on who accessed it. It was only for a second. Since you've already been accessed that part is over. Good luck with chemo today. For the majority of us it was just a long boring day with nothing really happening. You might get a little high from the Benadryl if they give you that but that's about it.
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linda505, too cute!
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I want linda's hat. BTW linda you look so young
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Thank you girls for the wisdom and especially the Lago Speeches... That last one cracked me up AND it's so true!!! I have been motivated and inspired! Glad I could share with you girls!!!
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Nunci glad to help. Some people prefer the seat belt and some the shit doesn't happen. To be honest I'm still waiting for shit to happen but I still haven't won the lottery yet… maybe I'll play today
But it's so nice when everyone speaks up and says "Yeah that's normal. I felt the same way." I know when I read that in time it gets better it was a big relief. Gotta love these gals!
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Nunci I too had the post-traumatic stress response thing. I love SpecialK's advice - try meditation. It is hard to make yourself do it, but wow...if you stick with it, it gives you tremendous benefits. I'm learning so much about myself, life, learning to be "at peace" with whatever happens in life... Oprah and Deepak run free 21 day-series every few months, and they are fantastic. I highly recommend. They are doing one now - 5 days left.
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dance - I found that meditation takes practice! Sounds counter-intuitive, but when I first started I was thinking all kinds of thoughts while I was supposed to be quiet and focused - like what I should make for dinner and should I run additional errands or go home and take the dog out, lol! After a while I got better at it. I use those techniques daily to center myself, but I particularly like informal meditation which is trying to fully experience whatever moment you are currently in - like if you are doing the dishes you need to focus on the warm water, the scent of the detergent, how the dishes feel in your hand, etc. - it may sound hokey but it helps clear your mind of going in a thousand different directions at once. Kind of like when you drive and are thinking of lists, tasks, phone calls, etc., and then can't remember anything about the drive itself. We all multi-task too much in the name of efficiency without acknowledging the stress that it causes, and the difficulty in managing too many thoughts at once. Some of Dr. Kabat-Zinn's work is specifically linked to breast cancer patients and the effect of stress on the immune system, and how MBSR can potentially alleviate this.
lago - living in Florida, which is mecca for really bad drivers, I actually do get in my car each time thinking I am going to get in an accident, lol! But, I put on my seat belt, grit my teeth, and try to meditate at red lights. We have lived here since 2006, my DD was a senior in high school. She has been in eight accidents in that time, only one of which was her fault, and that one was contributory by the other driver. Makes you want to just stay in your house!
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Thanks Lago - think that picture makes me look like a kid LOL - I am 57. Having a good day today - which I know most do the first day after chemo - my mouth tingles a bit now and then - they gave me the Mugard stuff so I am using that a few times a day to try to prevent the mouth sores. Found my hat at walgreens on sale for 9.99 and could pass it up. The nurses loved it and so did the other patients - nurses told me to bring it every chemo as getting the smiles and laughs are not only important for me but for them and the other patients. So I think they have designated me as "chemo class clown"
BRCAplus test results back - all negative - my daughter is relieved - but she also knows that 90% of bc isn't genetic - at least by the identified genes. But I am glad to able to provide her this information in a very stressful time for her.
I am going to ask my MO the upside downside to the steroids and try to get them only in my IV premeds. I don't know how successful I will be but he did say her would consider having me cut the dose in half for round two. I feel all jittery today and that is how I felt after I took them the day before. DO NOT LIKE THEM AT ALL!!
Footballnut my friend - I am sitting with you right now - telling you all will be fine.
Special K? how is it going?
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SpecialK that's because of all the elderly drivers. My parents live down the cape (Cape Cod, MA). They have been in so many accidents that aren't their fault. One of the worst happened to my friend's daughter who lives there as well. She was hit by an elderly man getting off the school bus. Lots of surgery and rehab but doing fine now. Granted the Boston area has always been know for crazy drivers.
In general the car accident issue is getting worse. People are distracted by phone, navigation systems etc. I don't care if it's hands free it still distracts you. Chicago isn't much better.
So in your case I recommend the Shit (doesn't) happens speech.
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lago - lol! In her case a lot of shit happens! She was hit just before Christmas (fender bender) and the woman said that her encroaching vehicle signal didn't beep, so she sideswiped my DD. She was like WTF? What about your EYES? People are driving with beeping things only? That lady didn't really damage DD's vehicle as she drives a massive lifted pickup truck, but she effed up her own car - a Cadillac SUV. None of her accidents were with anyone elderly - they just suck at driving here - like making right turns from the left lane. Ridiculous!
linda - I go to the PS tomorrow and I am pretty sure he will take a look and send me back out to the front to schedule the implant removal surgery. I am eating protein, drinking protein, taking zinc, extra vitamin C, etc - I am considering trying to find a mystical healer of some sort. Maybe I just need to borrow your hat......
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SpecialK - my daughter got rear ended 3 times in one month driving to school. This was when she first got her license. Poor thing. She also has been in a couple more since then, none her fault- the most recent was she was hit by someone on a bicycle while she was stopped at a red light. Florida is a dangerous place to drive - I only have a 5 minutes ride to work but I say the rosary every time I get in the car - well that is lie - I haven't said the rosary since grade school and I shouldn't lie about stuff like that - but I definitely drive defensively
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SpecialK - say the word and the hat is yours!!
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Good tips on the meditation SpecialK, especially incorporating it more into daily tasks...will work on that more!
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linda - you are cracking me up with lying about the rosary, but I know what you mean - it is sort of like a "please let this be an accident-free trip" plea! DD has lived in Islamorada since Jan 1 of this year and has already been hit by an AT&T truck that turned too sharply and smashed into the front of her truck. At least a couple thousand dollars worth of damage, and it is a pain because she had to go up to Miami to take it to the body shop for repair. Poor DH drove his vintage '96 BMX Z3 to work for a while after we moved here but a tire and rim fell off the back of a truck on the highway and he ran over it - he was blocked in by other cars so couldn't make an evasive maneuver - it tore out the whole underside of his car. I thought he was going to cry - and he was afraid they would total it because of the extent of damage, but he squeaked by! That car stays in the garage under a blankie now!
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Linda - according to my brothers (long story) you just said the Rosary 2x now..... LOL
I don't know about Florida drivers but Washing DC and Chicago are not any better.
Specialk. Now that you have nothing to lose, try hot hot water and salt. Wash out the hole 2x today. Maybe that will help. Can't hurt if they're gonna pull it soon anyway. Perhaps boil the water and salt and let cool til you can put it on your body. I have done this on other wounds that I caused myself and they crust over in a day or two. Might not work but the only thing you have to lose is the TE and it looks like it's going anyway. Now I am NOT a doctor nor do I play one on TV but that's what I'd do. And then of course there is the cedar and white sage smoke you can waft over it as you whisper "close it up and make it heal. I can do this I really feel. It will heal and I'll keep the TE. As I will so mote it be" X 3. Hey, Can't hurt! (And there's your Mystical white witch to try!)
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round one of FEC. home and peeing red!! Lol. I was done in 90 minutes. The nurse told me that I might get a head rush or feel something in my sinuses. Well I do feel something in my head. It's weird. Feels a bit like pressure but not too bad. Other than that the port is still driving me nuts. I have percs for it but don't think I'll take it. I want to watch the hockey game and a perc will knock me out. Lol. They gave me a med for nausea before they started treatment and I have to take pills tonight and for the next few days. Neulasta shot tomorrow. Yippee!! Hope that all are good!!
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Don't forget the Clarion FOR THE New Asta shot# Glad it Went well.
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I see my MO tomorrow for the first time since surgery, and learning my cancer is triple positive. The invasive portion of the tumor was only 5 mm, but the ductal component was 1.9 cm. The more I re-read my path report and go to Dr. Google, the more freaked out I am. I have convinced myself it will be recommended I have chemo, herceptin, and tamoxifen. I'm only 34 years old. I have three young children (ages 9, 6, and 2). The more I understand about my path report, I am certain I made the right surgical decision in having BMX. I am terrified of the other treatments. Knowledge is power, until it scares the pants off of you. Any recommendations for questions to ask MO tomorrow? Anything you wish you knew when making treatment decisions?
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TXRangersGirl80 The beginning is the worst part. We were all afraid of chemo. 5mm I believe puts you just over the border of getting chemo/herceptin. Chemo sounds horrible but most of us did OK. It's not like you see on TV. That do have lots of meds to help with the side effects. I was actually working out in the gym for 70 minutes the day after my first chemo. Many women work right through it too only taking a few days off. Don't assume it's going to be bad for you. Most of us did OK.
Footballnut you are adorable except for that New York shirt. (I'm originally from Boston)
Linda I love the rosary thing too.
----------------------------- My ESD saga (repost) ---------------
I've been having issues with Anastrozole so I took a break. It's been 1.5 weeks but noticed improvement in 2 days. My biggest concern was the emotional issues.
Today I just spoke with my NP. She called early. I told her I wasn't too excited about Tamoxifen option. She claims there is less bone pain with Tamoxifen. I told her my concern was the depression… granted it would be nice to not have the back/shoulder pain but the depression was at an unacceptable level. She said the depression isn't a typical SE but given that I went of the drug and have recovered 100% she knows that it's very real. (not sure WTF she is talking about because it is posted as an SE on Astrazeneca's site ).
Also expressed some concern about being HER2+ not metabolizing it as well. She has not heard about that but again with talk to my MO… and of course the Uterine cancer risk.
I asked what benefit I got from the 3 years. She told me that 5 years was an arbitrary number that they studied so they don't know about 3 years. (That's what happens when the Rx companies run/pay for the studies. They don't want to know if we can do it for less. They just study if we can take it for longer. They don't make money from us taking it for less time.) She's sure I did get benefit but not sure how much. I asked just in case I can't move to plan B or C.
So she is going to talk to my MO about Exemestane (Aromasin). Her concern is the SE will be the same especially the back/shoulder pain and other stiffness but she does agree that sometimes folks do better on it. She also said they can send me to someone to treat the depression on the drug. I am not on board with that. I don't need another doctor nor do I need a med messing with my mind when we know what's messing it up in the first place. Another drug most likely will me another SE. This is getting ridiculous already.
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TXRangersGirl, I had almost the same diagnosis as you - 5mm IDC, Grade 3, and about 2 cm of DCIS. Had I not been HER2+, the docs would not have recommended chemo. As you've probably learned, the recommendation for chemo + Herceptin starts at an invasive tumor size of 6mm (at least that was the case when I was diagnosed in 2012). I discussed at length with both my breast surgeon and oncologist whether or not to opt in for chemo + Herceptin (my oncologist is not willing to give Herceptin without chemo, because there is no data (yet) on whether or not it works as a stand-alone treatment). I ended up going ahead with chemo, and I'm glad I did. I'm a lot older than you - I was 60 at diagnosis. My oncologist recommended 12 weekly taxol + Herceptin, and then I finished up the year of Herceptin at tri-weekly intervals. For me, weekly taxol was really not bad at all - no nausea, I worked throughout treatment (except infusion day), had low hemoglobin counts (anemia) but never got to the danger level. I was able to save my hair using Penguin cold caps, and they worked really well with the weekly taxol. There was research published recently confirming that weekly taxol plus Herceptin is very effective for women with our diagnosis - someone posted a link to the research several pages back. Don't Google too much - a lot of the information you find on the internet is outdated!
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Brca testing. 3 of my cousins & sister had negative results so both my mo, geneticist feel I would be negative. We requested a more comprehensive test that was denied. I don't see the point of the Brca for me since I know it will be negative. I'm Jewish , but middle eastern ancestry that goes back 2500 years. I don't believe it will show anything new for me.
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FBN - you look soooo young ((((hugs)))) 90 minutes!! Wow!! FEC took me around four hours. You will pee pink for most of the day - it's from the "E" in FEC and that's the one you need to drink a lot of water for to get it flushed out of your bladder, or it can cause problems. Hopefully you'll have minimal SEs from it all.
Lago - I went from Arimidex to Aromasin. Was having excruciating back pain, knee and hip pain on Arimidex. Also had perpetual "chemo brain", but worse. Aromasin has been a godsend for me. Pain is almost gone, sure, I still have a lot of stiffness, and it takes me a couple of minutes to stretch out when I've been sitting for too long, but compared to Arimidex it's heaven! I also got my brain back! lol. I could happily (well almost happily) stay on Aromasin for another 7 years if I had to and not the 2 I have left.
Trish
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Ugh Lago- I feel for you on the depression issue - I suffered from depresssion and panic disorder for quite a few years in my early 30's - was medicated for two years but managed to work myself off the meds - I to this day don't understand the depression as I was very happy during that period of my life - I think it was a total chemical thing and that med did have side effects although they disappeared after about a month.
I am not really looking forward to that part of my treatment either and am concerned about bone loss but will see where this leads me. It is a shame that there aren't any studies on lesser time periods of these drugs - but I guess it would be kind of scary to be in a test to see if 3 years are just as useful but there isn't any money to be made in that either so doubt it would ever get funded. I think eventually we all have to weigh quality of life issues against our fear of recurrence and make a decision that works for us - hard decisions..
Ending day one past chemo - just took my first claritan - have my shot in the am. Feeling tired but ok - appetite and taste buds were good today so made a nice meal. I worked until 1 PM today then went to the grocery store and made dinner - so had a full day. Been drinking like crazy and visiting the bathroom alot. Mouth feels funny but not sore yet - doing the Mugard and Biotene - hope I can avoid the sores
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moon - my kids learned to drive in Washington, D.C. - that is why I have so much gray hair, lol! Thanks for the salt water suggestion - this area does seem a bit scabbed over, but still soft because of the xeroform dressing, and the skin is granulating at the edges, but as you say - can't hurt. Thanks also for the spell I can cast - seriously, I might just do it! Also, this is not a TE, this is my implant - I think that is why it is bothering me more to lose it. I am so far beyond the TE - exchange was in Feb. of 2012. It seems bizarre to be having these problems now.
football - take the Claritin at least an hour prior to your Neulasta injection - it totally worked for me, and I def recommend doing it - continue taking it for a few days minimum. Also if you are peeing pink/red you may want to use a water bottle or baby wipes to rinse off as the drug is caustic and can burn your skin on the way out. Seriously.
texas - ask your MO about doing Taxol and Herceptin - there are a few triple positives who post, particularly with small tumors, who have done this, the post above from PatinMN, and also fluffqueen come to mind. It can be a less harsh experience. I think there may be a thread or two that also deal with smaller Her2+ tumors and chemo.
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Linda I too was concerned about bone loss. Osteopenic before starting chemo (at age 49!) I lost a lot after chemo/6 months of Anastrozole but remember I was forced into chemopause. The first year of menopause is when you usually get the most bone loss. I was steady for a while then this past October my spine went into osteoporosis. Everything else was stable. But they do have meds for that. Granted Fosamax is giving me heart burn so I'm going to try Reclast. So far I'm on board with trying a few other things. We'll see what my MO has to say about my response to Tamoxifen.
If your mouth starts to feel "hairy" be sure to contact your MO right away. Some people do get Thrush. The longer it goes untreated the more difficult it is to get rid of. It's not serious but you do want to address it. Biotene hopefully will help keep that at bay.
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