TRIPLE POSITIVE GROUP
Comments
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Pbrain, I have totally gone through these thoughts. I'm getting a little better but I blame myself too and all I can control is what I eat. So I start getting really anxious around meal times when I haven't figured out in advance a healthy choice because my go-to foods have always been carbs (I used to describe my diet as anything you can put butter and cheese on) and I never thought it was unhealthy because I've always stayed relatively slim. These days, I have pretty much eliminated bread and pasta from my diet but I can't give up sugar (though I've cut back alot). And this time of year is bleak with the light changing to winter and the days getting shorter. I used to just binge on chocolate almost every day (melted chocolate chips with sweetened condensed milk to be specific) to lift my winter mood. I still have dark chocolate but I load it up with nuts and coconut and flax. I still worry that I'm not doing enough but I also believe there are many factors beyond our knowledge and control.
Curious about the lack of bloodwork here, must be a free healthcare system thing? Like if there's no cause for concern, tests aren't done just as a routine? I'm not worried but I'll ask my MO about it next time.
It's interesting to that they can come up with distinct side effects for Herceptin when it has only recently been used alone and not post- or concurrent with chemo. The original trials paired it with Cisplatin, a lung cancer drug that doesn't even work on breast cancer. Couldn't many of these symptoms be longer term effects of chemo? I don't know, maybe that doesn't make sense either...
Have you seen this video? This lady makes me happy -0 -
Marlene - my bloodwork was weekly during chemo, but every other round (so once every six weeks) with Herceptin.0 -
hello all, I've been AWOL for a while - went to Dublin for 10 days with my DH and 2 DS to see family. Even though I was there a few weeks ago, a visit for me means lots of cancer talk, so I've been reading since I came back, but not posting.
(((((Pbrain)))))). You are NOT responsible for this. S**t happens and unfortunately it happened to us. As others have said, it's normal to start looking around and taking stock now that you're coming to the end of active treatment. Real life has to start again; but everything has changed. We all go through the why me/is it my fault. The reality is nothing we say or do will change the fact that we got bc. All we can do is accept it and get on with the rest of our lives as best we can.
If there's someone at your tx centre to talk to, nows the time to do it. If there isn't someone, ask for a recommendation - you won't be the first to do so!
You've come through such a lot, you've had to be strong for so long, it's not surprising that it's left you depressed. But you've proved that you ARE strong, you WILL get through this. Hope it helps to know we're all here for you, holding your hand.
Take care,
Nicky0 -
Miss Jane...big hugs my friend! I too am on H only now and feeling kinda lost...I am seeing a mind and body therapist at Cleveland Clinic's Integrated Medicine department...in only 4 weeks I am totally impressed with my progress. We do a lot of hypnotherapy...guided stress reduction, etc It has totally worked for me!
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Hi all-- Regarding fingernails- someone on this site posted about a fingernail product REJUVANATE that has helped my nails so much. My nails never lifted but they peeled very bad and were very brittle,now after using this for one month they are longer and strong enough for me to get a professional manicure. Sorry I do not recall who recommended it but I want to say THANK YOU.0 -
Thank you everyone. Hugs to all of you wonderful women!! I don't know what I would do without this board. It just helps so much to know this is a normal part of the many stages of healing after breast cancer. An odd thing happened to me last night. I couldn't sleep (which for me is very odd) and I was tossing and turning when I heard a thought in my head--do you know what I mean? It wasn't really a thought I came up with, it was put there by God. He/she said "it is all gone, you are done." Do you guys think I'm a nut? It was the first thought that came into my mind this morning when I woke up to.
I really think a big part of my problem is reading that when the cancer comes back, it comes back with a vengence. That just scares the willies out of me.
It is so hard not to blame myself though. I mean I was always healthy, in good shape and I just kind of feel like I beat the crap out of myself and this is what I get. But I have to tell myself that I've always been relatively good at taking care of myself. I'm overweight but not rolling around WalMart in a motorized cart! I drink wine by the gallon, but I still hold a job, have never run naked through my neighborhood, no DUIs, bar brawls, etc. I need to lighten up on myself!!
Liz, what do you think? Want to start chatting with each other about baby steps to motivate us? Here is my baby step--I'm going to clean my closet this weekend, and I'm going to do 15 minutes each day on the treadmill (Saturday and Sunday). I'll post Sunday to tell you how I did and what my next baby step is. Whatcha think?
SpecialK, you reminded me of a question I have. I bought a probiotic that was suggested by a few women on this board. The product insert said not to use if you have a central line. I was like "well, duh.." Then it said don't use if you have a port-a-cath. I guess there are concerns with colonization? Have you ever heard of that? Now I'm afraid of it and it just sits in my cupboard...
Marlene, you made me laugh out loud. My diet is definitely anything you can put butter or cheese on. I swear I'd be thrilled with a plate of potatoes, rice, pasta and egg noodles with some bread on the side!
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Pbrain - you just made me realize that I've never read the product insert on my probiotic. But all my doctors know I'm taking it . . .
Excuse me while I go read the label . . .0 -
Pbrain, I think those of us that live alone have more time to worry about a recurrence and what we did or didn't do to get this damn cancer.Last night when I went to bed as soon as my head hit the pillow I got very dizzy. It went away as fast as it came,but ofcourse my mind had me with mets to the brain or a possible stroke. I was afraid to go to sleep but I did and woke up fine.
You have a great sense of humor,thanks for making me laugh. Have a great productive weekend and find time for some fun..0 -
Thanks everyone for the suggestions for loose toe nails.
Lynn1234, our instructions said to avoid dark nail polish because it could mask bacterial or fungal infections. Try buffing them to smooth them a little, maybe paint with a clear sparkly polish to add a little fun.
Pbrain, I cry at least once a week. I think, even those of us who have a very good prognosis, as I do, feel a bit overwhelmed by the mere fact that we will always have that possibility of recurrence in our life. That scares the hell out of me. I relatively sailed through cancer treatment, but I still fear the idea of having to do this again. As for causing or contributing to our cancer: my husband and I argue about this all the time. He says that because I didn't exercise and eat right I basically gave myself cancer. (He ignores the fact that he exercises regularly and eats "better" than I do, but just got a PSA test score of 10, very likely indicating prostate cancer, and three weeks later still hasn't seen the urologist.) I think my unhealthy lifestyle may have been a contributing factor, but BC more likely was due to HRT. I took the lowest dose of estrogen replacement for over three years, but because my tumor was 98% estrogen positive, the HRT had to have fueled that tumor growth. (Virtually no family history of breast cancer.) My point is, we really don't know what does or doesn't cause our cancer. I think the amounts of drugs (particularly hormones) in drinking water is a serious problem. Here, waste water is purified and returned to the drinking water supply (reservoirs), but drugs and chemicals like cleaners cannot be purified out, only particulates and bacteria. I used to think paying for water in bottles was silly, but now I no longer drink our tap water because of the amount of hormones and other drugs we're dumping into the water supply through, yuck, urine. Don't be so hard on yourself (easy for me to say!). Also, you have been a great source of reliable information for those of us who are not well versed in medical terms and testing. As someone who obsesses over every test, treatment, and SE, I really appreciate the contribution you and the other well-informed gals make to comfort and encourage the rest of us.
ChickaD, yea! For finishing rads. Hey! How did you pass me up?!!! Oh, yeah, took a short break for my niece's wedding. On a beach in south Texas in November! Beautiful and fun, but windy. Bridesmaids wore knee-length dresses! We got a great laugh over 6 girls trying to not show off everything underneath. I don't think they planned for 20 mph winds.
Only two rads left!0 -
pbrain - I was talking about the probiotic colonization and port situation with a friend of mine that is a histopathologist. When she was a med tech she and I worked together in the blood bank. Her take was that they are beneficial bacteria so that would not matter - if they are the same live cultures as in yogurt, there is no warning on the yogurt container about ports. I have been on a probiotic since H only infusions and have had no issues, so I am not sure what to advise.0 -
Pbrain, my probiotics were prescribed for me by the infectious disease doctor!!!! So I guess I wouldn't worry about it. Much love to all.0 -
Pbrain: you just motivated me. I will do the same. I need to clean a closet and my treadmill has dust on it. I will let you know how I did on Sunday too!!0 -
Thanks Liz, let's do it!
As somebody who writes and negotiates with FDA on our package inserts, I know there is a lot of mumbo jumbo in there to protect ourselves and the agency. So I suspect the port warning is just CYA. Thanks for the info Special K. Mine is just the run-of-the-mill acidophilus, so I should be ok.
Ok, new item on my list--take probiotic this weekend.
Karen, thanks for the kind post. You guys really are helping me to know I'm not the only one with these thoughts and fears. Eileen, I get dizzy a lot when I lay down. I've been that way since I moved to Indianapolis 11 years ago. So we must both have very, very slow growing brain tumors ;-)
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Eileenohio - I was the one who mentioned Rejuvacote for nails a while back. I had read about it elsewhere on BCO, and had bought some but hadn't yet used it. I STILL haven't used it, but with your "testimonial" I will get my rear in gear and start this weekend. My nails are still very brittle, thin and peel easily.
Question for all of you - I have a very tender rib, right below my cancer breast. It's been a bit tender for quite a while, and I figured it was caused by radiation. (I finished rads on 2/22/13.) However, it's getting worse, not better, and I'm wondering if anyone else has experienced this.0 -
PatinMN. Thanks for Rejuvacote. I followed the directions to a tee. It seems like a lot but it does dry very fast. By the 5th or 6th day the coats of polish would start to peel or crack but not the nail so I would remove it all and start again. Hope it works for you..0 -
Girls...I love this thread. I just perused the last couple of pages and read everything from depression and "how did I get this s$&tty" disease to vitamins and nail are . Wow!! Everybody on here is truly wonderful I their own way.
One thing I have to say is that I share so many of the same feelings; it's good to know I'm not going crazy in this whole process. I too wonder why I got cancer (low BMI, no red meat, exercise 4-5 times per week. Red wine only on weekend, no family history, etc ). I have finally accepted that it just happens and how I handle myself from here is what matters. I am working to keep my mind strong and positive. My husband is a firm believer that the mind is a powerful tool. My MO even said that people who cope better do better overall. So I do a lot of devotional reading, pray, and try to stay mindful on all of the blessings I still have. Some days it's easier than others .....you all know how that goes.
Pbrain: I think you once asked to keep everyone posted on the effects of Herceotin/perjeta combo. Well I had my first dose last week and all was going well until 2 days ago when I got a itchy rash that has now spread to my trunk and neck. I had to go in to see the MO today (unplanned) so he could assess. In a nutshell, it is side effects from perjeta and now I have to go on an oral steroid taper and a rx for Benadryl (as if I'm not tired enough). Still these side effects are better than those with AC.
Hugs to all0 -
Miss Jane....wish I could give you a big hug in person!
Nails.....I continued to get my nails done all thru treatment...acrylics...never had any problem with lifting, etc I also continued to get pedicures monthly too and no nail problems.
My Herceptin only symptoms are a bit of fatigue, leg cramps and muscle spasms.
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Pbrain, I would trust your inner voice that said that the cancer is gone. compared to me, you are stage 1 not stage 2, grade 2, not grade 3, and no nodes vs. my 1 node - so, compared to me you have an earlier, less aggressive cancer, and have had the same aggressive treatment that I have had. Both my oncologist and radiologist think that I can be "cured" with their treatment, so your outlook should be even better. I do know what it is like to worry. In terms of preventing a future recurrence, have you looked into melatonin? when I mentioned to my nutritionist about prevention she said that the melatonin would take care of that - I take 20 mg. a day - and she sent me links to a lot of studies. Also reducing stress is really big. Cortisol is bad, I forget exactly what I read about how it relates, but it does related strongly, so we should all take the advice of living in the present. (I too need to work on exercise more, but am giving myself a break until I'm done treatment - My blood counts are low - I fatigue easily - you can only do so much. we'll all be feeling better in the spring and summer.0 -
PatinMN, I too have a tender rib under my cancer breast, and haven't even started radiation.0 -
In terms of what caused my cancer - I have lived in the country and have had clean air and water and been an organic vegetable gardener for the past 35 years. I wonder about the annual mammograms I had starting at age 23 due to a benign fibroadenoma..... or the 14 root canals I have (some postulate a link) - to my sugar addiction in my early years - to all the chemicals in our environment... did my shampoo give it to me? BPA is implicated in breast cancer - so I worry about bottled water... bottom line: we will never know.0 -
patinmn, i have had rib pain since surgury, over a year ago now. i attribute it to nerve damage from that. and arimidex made it really BAD, so now on tamox, and pain is just now creeping up to a level where...... i dont want to move as much, and get angry, and want to cry0 -
I don't know but I was one of those who felt once I had surgery the cancer was gone… and I'm still going with that until someone tells me something different. It's probably why I'm so pissed about the ESD (estrogen sucking drug in my case Anastrozole) giving me Osteoporosis. I'm like "do I really need this shit?"
But back to the question of worrying about it coming back.
Here's the famous
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 my
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.0 -
Amen to what so many others have posted. As one who beat this once and came to back to face the dragon again, I can honestly say that BC is no respecter of persons. The crunchy granola people get it as well as those who smoke/drink/have bad diets, and everyone in between. I look at my grandmother who never smoked, never drank and led a fairly healthy lifestyle yet had BC twice. And my grandfather who smoked from the time he was 12 and worked in the coal mines, yet never got lung cancer and lived into his 90's. I remember sitting in a doctors office after my first dx and taking a test in a magazine that would assess your risk of getting BC. You know, age of first period, age of first child, family history, lifestyle, etc. Guess what? I had a negative chance of ever getting BC. Yet there I was, recently dx'd. Who know why any of us get this disease. There is so much that is still unknown, so take it easy on yourself.0 -
Bren my risk of getting breast cancer at the age I got it was less than 2% (risk factors included no kids and dense breast tissue). My risk of getting a new breast cancer even after having a BMX is probably about the same. My risk of getting hit by a car is probably much higher.
Remember you don't want to just survive you want to live! Worrying about "what if it comes back" isn't living. You don't worry about getting a heart attack do you? Go out and enjoy life because guess what… you're still here for a reason.0 -
lago, I think a lot of us who are here fell into that low risk category, so I'm really not sure how "they" came up with the criteria. You are right though, we have a higher risk of a lot of other things, but somehow we are all here. Thankfully we have each other for support
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Amen Lago!0 -
lago thanks for making me laugh ... I say the same thing " shit happens " may it be good or bad it happens , lol ..
g'night all
love this group!0 -
Lago - love your speeches.
I had to laugh about the numbers because when I was discussing risks of radiation with my RO, she kept rattling off all these scary things and saying "but it's less than a 1% chance. . . ". I didn't want to be snarky because she is a great doc, but I wanted to guffaw and point out that my BC risk at diagnosis was <.5%.
Now I just say, "numbers schmumbers".
:oP
Oh - and checked my probiotic label. It just has the generic "check with your doctor before taking" warning.0 -
This closet feels like it is about 1700 square feet!0 -
Lago, I so love your shit speech! It cracks me up, and it is really true!!! Now look both ways before crossing those city streets!!! And Bren, I took one of those quizzes too about getting breast cancer--from a magazine during a chemo infusion!! And guess what? My chances of ever getting breast cancer were less than 1%. Now how ironic is that? While they are filling my tank with taxol...sigh.
Flavia, I have wondered if my BC was from living in the middle of Philadelphia for the majority of my life. At one point we had a week where we had to boil our water because of some contamination, and I remember seeing little tiny minnows coming out of the tap...har!! My MO told me during our first meeting that he sees BC as two treatment groups--Stages I, II and III as one group and Stage IV as another. I didn't realize it at the time, but what he was telling me is he was going to treat me the same as he would a Stage III patient.
So yeap, I need to just chill. I can't believe all of the sh!t in my closet! The bigger the closet, the more I hoard crap. I can't even remember where I got half of it.0
