Stage 2 Sisters Club

12467149

Comments

  • colt45
    colt45 Member Posts: 382
    edited August 2013

    There is a weekly Taxol thread that I know of. My wife did weekly Taxol and finished 4-25-13.

    She iced fingers and toes with frozen peas.

    She never lost a nail and didn't even have black and blue on her nails. She had slight lifting on 2 fingernails at different times---but just "taped up" with bandaids and never lost them. She had no neuropathy during treatment---but felt a little post treatment in her feet, which has since subsided. She also used tea tree oil on her nails.

  • specialk
    specialk Member Posts: 9,261
    edited August 2013

    Important to note that tea tree oil is thought by some to be estrogenic - those who are ER+ might want to avoid it. Here is a link to a study, although this study has been cosidered to be controversial:

    http://www.ncbi.nlm.nih.gov/pubmed/17267908

    For those receiving taxanes it is thought that by polishing with opaque or dark polish it interferes with light penetration to the nail bed.  I received a small kit from Sanofi-Aventis, the maker of Taxotere - at my center on the first chemo day that contained clear nail hardener.  I painted my nails with one coat a day for 7 days, then removed it and started over.  On chemo day I painted fingernails and toenails with navy or dark gray polish.  Next day removed and went back to the clear polish regimen.  My nails looked great throughout - I had no Mees' lines, ridges or darkening, but I did lose my wedding ring fingernail (it was removed completely by the dermatologist) but it was from an injury high up on the side of the nail prior to starting chemo. The nail started lifting during chemo and as it grew out it continued lifting, so it was removed. It grew back completely in about six months.  I kept my nails as short as possible to avoid any leveraging pressure that might cause sudden lifting.

  • colt45
    colt45 Member Posts: 382
    edited August 2013

    I see talk of recurrence in this thread and obviously we're all trying to find some peace with the risk. I'm sure we've all read survival data----- but really, I'm sure we're REALLY interested in recurrence data...



    Not that we're NUMBERS----we're not. But, it CAN be encouraging to know about recurrence free survival. I saw a generalized, broad figure that put all Stage 2 at 11% risk for recurrence at 5 years.



    Then I read an article from June 6, 2012 where a Dr. David A. Margileth, MD said the following:

    "In general, when we see a recurrence of breast cancer, it is most likely within the 1st 5 years and almost always within the first 10 years. There are, however, rare very late recurrences many years after the original diagnosis. The latest I have seen is 36 years...."



    Now obviously the rare 36 year recurrence annoys me... I mean, geez. I guess it personifies the risks always being there---no matter HOW small---that we have to come to terms with... BUT...



    I am trying to look at the glass 1/2 full.... I think an 89% chance of no recurrence at 5 years are pretty good odds with the risk going down as years pass (even if it never totally goes away for everyone).



    You read SO much stuff on recurrence risk----and it can be frustrating when it doesn't all jive... but so many studies are older than others.



    I like the sound of the following: that it's considered rare (to some degree) that a recurrence would happen after 10 years.



    Cancer Math has a conditional outcome tool that shows risk of mortality as years pass (up to 9) from diagnosis. It also has a therapy outcome tool (that is probably a little outdated) which states a decrease in mortality after 15 years which can be as high as roughly a 70% decrease in some calculations.



    I think it does my mind good to think that even though the risk doesn't ever completely disappear----that at some point your chances get better to not have a recurrence-----to a point where it would be considered very rare.



    Additional input is certainly welcome on this.

  • specialk
    specialk Member Posts: 9,261
    edited August 2013

    I like the PREDICT tool better for looking at survival only because it includes information for Her2+ patients.  The Cancermath tool does not include any information regarding benefits of treatment with Herceptin because it was designed prior to treatment with Herceptin for early stage Her2+ patients. If you put your info into the PREDICT tool keep in mind that the tumor measurement is in mm, not cm, so multiply your cm by 10 to get the mm.  Also, while we are all stage II, recurrence statistics factor in much more than stage - grade, nodal status, treatment choices, Her2 status and hormonal receptors all change the recurrence statistics for each individual.

  • ruthbru
    ruthbru Member Posts: 47,680
    edited August 2013

    And whatever number comes up, you can lower your own personal risk considerably by exercising religiously, gettting to and then maintaining an appropriate weight, & taking a daily low dose aspirin.

  • flannelette
    flannelette Member Posts: 398
    edited August 2013

    why the daily low dose aspirin? I mean, I've heard a lot about exercise but......?

  • flannelette
    flannelette Member Posts: 398
    edited August 2013

    and ruthbru - you've posted about 24,000 times, and I see you everywhere, and you were dx a year before me (almost same dx) and are off arimidex, but are still very active here - how come? me too, though I'm only at 600 posts and I didn't start posting till nearly all txs were finished - was too scared to look here! I would not let the drs tell me my stage! finally, one day, Springtime told me...and it was ok to know.

    I check here about 3 times a day, morning, mid-day, night - I think I might be addicted and it's my version of a "smoke break"?

  • ruthbru
    ruthbru Member Posts: 47,680
    edited August 2013

    Flannelette, I have so many post because I am addicted to the games!! Smile I didn't start posting until I was done with treatment (except Arimidex) either. I found I was gravitating to the 'I am having a terrible time with......" (Fill in the blank) and didn't need that. I had done my research, knew what I needed to do, so just did it. Why I spent here now is: I have made some great friends whom I really like to hang out with, I like to do research & am a teacher, so am happy if some of the things I've learned can help others, and when I was first diagnosed, what helped me most was to talk to other people who had 'been there/done that'. Who 'got' what I was going through, and who had come out of it really OK. So hopefully I can be an encouragement for a few people that way too. Plus the exercise and weigh in threads keep me accountable!

    OK, back to my 'teacher mode' Tongue Out. Here is something about aspirin (which I was already taking for heart health) taken from an article dated 4/23/2013. (Of course, clear it with you doctor if you think you want to start this.)

    New Evidence That Aspirin May Prevent Cancer                


    Taking a low dose of aspirin every day could have the potential to prevent breast cancer or stop it in its tracks.

    That was the news over the weekend from the annual meeting of the American Society for Biochemistry and Molecular Biology in Boston, where a team of researchers from the Veterans Affairs Medical Center in Kansas City and the University of Kansas Medical Center presented evidence demonstrating the effects of aspirin against two types of breast cancer.

    One of them, so-called “triple negative” cancer, is the most aggressive type of breast cancer and also the most dangerous because it often doesn’t respond to conventional therapies.

    Last year, another study also conducted at the University of Dundee in Scotland found similar results in 116, 181 women who take aspirin regularly. A 30-percent lower risk of breast cancer was found in women who took aspirin for three to five years  and a 40 percent risk reduction was found after more than five years of aspirin use.

    Breast cancer is just one of many types of cancer that are being studied in relation to the lowly painkiller. Previous research has shown the potential of low-dose aspirin to:

    The most exciting research on the aspirin-cancer connection came last year, when three related studies were published simultaneously in The Lancet and The Lancet Oncology. The first of the studies looked at aspirin and the likelihood of dying from cancer. Analyzing the data from 51 randomized trials, the authors found that aspirin reduced death from cancer by 15 percent and that the benefit increased over time, rising to 37 percent after five years.

    The second study looked at the effect of aspirin on cancer metastases and found that aspirin appeared to reduce the risk of cancer spreading by 36 percent over 6.5 years. A third study was an analysis of data from a number of studies that followed people over time, and the results of this study appeared to confirm the other two.

    At the time, Peter Rothwell of Oxford University, the lead researcher on the studies and one of the world’s leading experts on aspirin and cancer, summed up his conclusions by saying:  ”Aspirin reduces the likelihood that cancers will spread to distant organs by about 40-50 percent.”

    How Does It Work (If It Works)?

    There are two explanations offered for aspirin’s possible cancer-protective effects. One is that its anti-inflammatory action prevents the inflammation that’s thought to trigger or boost the growth of cancerous cells.

    But some studies, including  yesterday’s breast cancer news, suggest that aspirin’s target is cancer stem cells, the stubborn cells at the root of tumor growth and metastasis.

    The lead researcher for the new breast cancer studies, Sushanta Banerjee, director of the cancer research unit at the University of Kansas, noted that chemotherapy for breast cancer does not necessarily kill stem cells, which will restart tumor growth if they survive.

    The research so far suggests that aspirin is more effective against one type of cancer, adenocarcinomas, than against other types. Most colorectal, esophageal, prostate and breast, and some lung cancers are adenocarcinomas.

    Aspirin-Cancer Connection Research Still In Early Stage, Experts Caution

    Like most of the aspirin and cancer studies to date, yesterday’s breast cancer research was of the preliminary type, in this case a test tube study using cancer cell lines and further testing in mice.  However, it’s exciting in the way that it extends the knowledge gained from previous aspirin and cancer studies.


  • colt45
    colt45 Member Posts: 382
    edited August 2013

    @SpecialK:

    PREDICT's ability to address HER2+ is key. I'll like it even better when it addresses survival more than 10 years out. And I wish it calculated the decreasing risk of recurrence as time passed.



    The recurrence risk past 10 years seems to be something of a topic for debate. On one hand, I read where recurrence after 10 years is rare-----and then I read things that lead me to believe that it's NOT.



    I wish PREDICT addressed it. Maybe some day.

  • bevin
    bevin Member Posts: 519
    edited August 2013

    Dear Ruthbru and Flanelette - I read about aspirin benefit for reducing BC as well. My Onco recommends a daily low dose. Its truly a miracle drug - they keep finding more things it helps with and for most people causes no problems, only benefit.  If you're on coumadin, you should not take it. Contraindicated .

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    What I don't understand is why not take it every day? Is it really better as a cancer preventative taken every other day? If so why?

  • QCA
    QCA Member Posts: 1,150
    edited August 2013

    My DH takes aspirin daily, but I'm allergic to it apparently.  Several years ago I had an angioedema reaction to advil and was told to avoid NSAIDs.  What to do?  I take blood pressure meds and actually had my only other angio-edema reaction to one of them, lisinopril.  These reactions are odd, in that they occur suddenly after years of taking a drug. 

    Kathy

  • ruthbru
    ruthbru Member Posts: 47,680
    edited August 2013

    My doctor said to take it every day.

  • specialk
    specialk Member Posts: 9,261
    edited August 2013

    This is part of an article that discusses the less than 7 day a week of low-dose aspirin regimen.  The data was gathered by anecdotal method as most of the women were taking aspirin for heart health.  They were taking the aspirin anywhere from 2-5 times a week in this study, but it consisted of more than 4,000 breast cancer survivors.  I personally tried to take it 7 days a week and could not tolerate it due to a previous GI surgery for reflux in '95.  I take it every other day with no problem, and also with the urging of my oncologist.  Note this article is instructing aspirin every other day.

    "The report just released from the Nurses' Health Study, in a rather understated way, offers 2 million American women who have had breast cancer some vital and actionable information. Taking a single aspirin tablet—a baby aspirin or one adult pill—every other day can be lifesaving. (In fact, were these aspirin tablets a hot new biotech drug, we would be popping champagne right now.) The long-term, low-dose aspirin program was initiated a year or more after the cancer diagnosis as an add-on to treatment, not as a substitute for it, to control the fate of tumor cells silently left behind. For some women, this post-treatment phase is one in which the cancer has gone underground and not entirely disappeared. It can lead to unexpected recurrence with the cancer spreading sometimes 10 to 20 years after diagnosis. Scientists seem to have stumbled upon an easy way to cut that risk."

    flannelette - here is the potential reasoning behind taking aspirin to prevent recurrence:

    "Researchers don't know for sure how aspirin might affect cancer growth. NSAIDs inhibit the enzyme cyclooxygenase, which could play a role in disrupting breast cancer growth by suppressing estrogen synthesis. Aspirin is unique among NSAIDs: it irreversibly inhibits cyclooxygenase, which could explain its possible preventive role. Some research has suggested aspirin may affect cancer growth because of its anti-inflammatory effects (chronic inflammation has been linked to cancer). However, scientists are still investigating these processes."

  • Mely19
    Mely19 Member Posts: 66
    edited August 2013

    Nisa, I am in Cali and was actually given the choice to do the TAC or the AC then T. They said the TAC side effects were harsher with potential lasting effects of neuropathy so I chose the AC then T. Both choices are awful in my opinion.



    JDB, I actually had a harder time with the Taxotere (same drug family as taxol) stomach was better and no nausea but you get a different set of side effects. Had some really bad painful swelling on the very first infusion that they had to give me an extra week to recover and cut down the dose the next visits. After that it was more manageable but still awful. Lost all but 1 fingernail 2 months later but it wasn't painful so not a biggie- just annoying. Onc said most do better on the T part so hopefully your wife is part of that group.



    We too bought a car while I was in treatment but it wasn't for me it was for DH! He has been great taking care of kids while i rested so he deserved it. Plus his commute was way worse than mine.

  • Mely19
    Mely19 Member Posts: 66
    edited August 2013

    Ok just realized I missed page 4 on this thread. Guess we have moved on to aspirin topic now. I feel like I'm always a little behind in all the threads! Can't seem to keep up.

  • toomuch
    toomuch Member Posts: 254
    edited August 2013

    Hi. I just stumbled across this thread and read all the posts from the beginning. It's nice to have a Stage 2 home!

    JDB53 - These links may help give you insight into why your wife's MO may be recommending radiation.

    http://www.medscape.com/viewarticle/743992

    http://www.onclive.com/publications/obtn/2013/april-2013/Deciding-When-Post-Mastectomy-Radiation-Therapy-Is-Warranted

    My tumor was Stage 2a but 2 positive nodes with ECE. I had a lumpectomy, chemo and radiation and then a BMX with flap reconstruction. It was a long haul but I'm glad that I did all of it. I've been on Arimidex for 2 1/2 years. I have morning stiffness and migrating hip/leg pain. It definitely gets better once I'm moving around. I agree that exercise helps at every stage of treatment. It's great for fighting fatigue during chemo and for the aches and pains post chemo.

  • Sunny_Girl
    Sunny_Girl Member Posts: 38
    edited August 2013

    Happy to find this thread - nice to fit in somewhere. One year out of surgery - bmx, 6 rounds TCH, radiation 7wks & herceptin for the balance of the year (every 3wks). Last dose of herceptin was a few weeks ago and my port comes out next week. On Arimidex and like many here concerned about the future. When I first met my oncologist and I wasn't sure if the floor was still falling out beneath me, very kindly wrote down 2B - CUREABLE. I decided to focus on that & do what she suggested. My very best wishes for everyone who has landed on this board.

  • JDB53
    JDB53 Member Posts: 139
    edited August 2013

    Great group here! Thanks Mely19 and Toomuch. Hello again Colt145. 

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    Thanks Ruthbru and Special K. I think I will go on one low dose aspirin a day.

  • jcolford
    jcolford Member Posts: 70
    edited August 2013

    Hello all and special welcome to the newest "2-bies"

    I am changing topic again - has anyone else been invited on facebook to secretly list your bra cup and size as a trip game?  These have to be one of my biggest pet peeves of what people post on facebook. (okay there are many other things but today this is it!) Can anyone tell me how this contributes to breast cancer awareness? Every time someone invites me to take part in this stupid facebook game I basically lecture them and asking them who and how this benefits.  They must think I'm a b**ch but I don't care.  I usually end my rant by encouraging them to prove they want to help by joining a relay team or raising money for cancer research. 

    I probably should have posted this on one of the threads about stupid things but this is my new favorite place to hang out. Tongue Out

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    Jcolford, that is really obnoxious! I don't belong to any bc groups on facebook, so I have not been "honored" with that invitation. 

  • jcolford
    jcolford Member Posts: 70
    edited August 2013

    I'm not on a bc group on facebook either these are invites from supposedly well meaning women who can then pat themselves on the back thinking they are doing something great for breast cancer awareness. You would think grown women would have more common sense than this.

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    Yes, you would think that! Laughing

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013

    Hello ladies - just found this thread.  I'm stage IIa. 2 IDC, 1 a little larger than 1cm, 1 about 3 mm.  DCIS 7.5 cm.  Had 2 positive nodes.  onco score 14.5. 

    no radiation, no chemo.  Had a UMX with DIEP about 6 mos later.  Took tamoxifen for about 6 months, had blood clots.  I've been on letrozole/femara for almost two years.  i have a fair amount of aches and pains from it.  I cannot take aspirin (allergic) or any other NSAID, but do take the natural form of it (white willow bark) 1 a day.  I also take a host of other supplements.

    jcolford - I am in complete agreement with you in regards fb!!!

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    GG, so glad you found the thread! I've never heard of the natural form of aspirin. Can one avoid potential stomach and liver issues with it, as opposed to the other aspirin?

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013

    Embarassed Yorkie, all I know is that I can take willow bark and absolutely can NOT take aspirin or any other NSAID.  When I take NSAIDS I get athsma AND my esophogus swells and i cannot swallow.  My doctor said absolutely not to take any of them again, as I could choke.  The willow bark doesn't affect me in any negative way that i can determine.  I take it every day to kinda take the edge off the pain, it helps me sleep, and I've had two episodes of blood clots (both with PE's), and the doctor thought it would be good to give my blood a little thinning boost :) as I no longer am required to take warfarin/coumadin.

    I didn't know there were liver issues with aspirin - I thought that was just a tylenol thing. 

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    You may be correct about aspirin and liver issues. I'll blame my confusion on the usual suspect, Aromasin! Laughing

  • gardengumby
    gardengumby Member Posts: 4,860
    edited August 2013

    Well, don't assume that I'm right, because I surely don't know much - and I blame that on letrozole!!!

  • pupmom
    pupmom Member Posts: 1,032
    edited August 2013

    Ain't it great to have so many medicinal scapegoats!