TRIPLE POSITIVE GROUP

Grandma, I am having a lot of tinnitus as well.  I guess it’s from the carbo.  No one mentioned that to me either.  It wouldn’t have made a difference but still.

I’m in that clinical trial and they ask me about all my SEs every so often.  I continue to report the incessant nose running that we ALL know is from the herceptin.  The study nurse has referred to it as allergies a few times.  I do have allergies, but this isn’t allergies.  This is incessant nose running from the herceptin.  They don’t seem willing to acknowledge it as a SE.  I mean it’s really minor but this is just to illustrate that if it’s not in the literature, they tend not to believe you, even if a whole bunch of us who are on the same drugs experience the same thing.

Generally my tinnitus hasn’t been very bad, but at one point during chemo, I think one of the earlier rounds but I don’t remember any more, I got up to go to the bathroom in the middle of the night and basically passed out.  I saw it coming so I just laid down on the floor until I felt up to crawling back into bed.  My ears were ringing really, really loudly, and no one has ever explained why that would be.  For those of you who haven’t done chemo yet – there were a few times that were the worst for me and that was one of them.  Generally it wasn’t *that* bad. 

And also – you can keep your hair!  There’s a cold caps thread.  Dana, your hair looks very pretty – I kept most of mine thanks to the cold caps.  There are lots of benefits of it, including a) I had a full head of hair at the end of chemo so I could feel “normal” again very quickly, and b) I’m very physically active and I never had to think, I don’t want to get on my bike because I don’t want my wig to fall off, or take that hike b/c it’s too hot to hike with the wig on, etc.  Some ladies have a lot more courage and go commando but I have been very selective all along as to whom I told.

Here’s an example of why – I got my hair colored for the 1^st time PFC a few weeks ago.  My regular colorist, who knew about my DX, was out ill but gave the formula to the salon so they could color it.  I told the hair dresser b/c it was relevant to how she treated my hair.  I was there for two freaking hours and SHE JUST COULD NOT STOP talking about cancer!!!  She was trying to be very sympathetic but honestly she killed a perfectly nice Saturday afternoon.  Newsflash – talking about cancer is depressing, helloooo!  Also hellooo, you’re not my friend!  You’re just a woman I’ve never met before who is putting color in my hair!  I eventually told her, firmly but as nicely as I could, that I did not want to talk about it any more.  I literally will try to make my next appointment when she isn’t even in because I know she’ll look at me and think “cancer patient” for, like, ever. 

Welcome to all the newbies, I read alot on this thread but don't post much, but I think u'll find it very interesting, loads of information and caring and u can always use that. Good Luck to all for a gentle healing.

Bren I've always wondered wow Chemo is doing all this good. And what else is it hurtin, I mean cancer's pretty tough so why wouldn't other parts of healthy suff gett affected too. I honestly think the Drs. who even know the most are learning something new all the time and it changes every year, every patient, every day. We just do what we have to.???????

I follow Dr Attai twitter and admire her enormously. this is precisely how progress is made ... MDS listening to their patients. By here...she is referring to her Facebook page......

Dr. Deanna J. Attai

8 hours ago ·

A bit of crowdsourcing help, please! I'm giving a talk at the upcoming The American Society of Breast Surgeons Annual Meeting - the tittle is: "Endocrine Therapy Side Effects and Treatment of Side Effects- What the Literature Says, What Your Patients are Saying"



Long title, I know! But I'm going to cover the reported side effects of tamoxifen and the aromatase inhibitors (arimidex, femara, and aromasin) and also what the literature reports as effective treatments.



Any physician treating patients with breast cancer knows that there are MANY side effects that get reported to us that we don't read about, and that there are many things patients find effective for managing those side effects that we don't have good evidence for.



Anyone comfortable with leaving your thoughts here, please do. No one will be mentioned by name or will be identified in any way - I'm interested in the side effects and remedies only. For those not comfortable leaving the information publicly, please email info@DrAttai.com - this email goes to me, not my staff, and as soon as I get the information I need, the emails will be deleted.



Thank you all in advance for your help! After the talk, I'll post the slides.

rivercottage - here is a link to a thread of upstate New York peeps:

http://community.breastcancer.org/forum/5/topic/800306?page=1#post_3440725

tonlee - I share your situation, and am glad that this year will be our 30th anniversary.  If this had happened earlier in our marriage things would probably not be so good, but I married a very patient man....

ashla, Dr. Attai is wonderful.  She is my second opinion breast surgeon and she is the ONLY reason I was able to get in with my oncologist - who has had a closed practice for years.  I will be forever grateful to her and I'm thinking about having another consult with her regarding the results of an ultrasound of my axilla.  

She also contacted several doctors about my micromet situation.  She truly is one in a million!  

websister be warry of Dr. Google. That was true in 2010 but I believe a newer drug for triple positives (not sure if for Her2+ hormone negative) called Lapatinib can. Komen Linky to some information on drugs for Metastatic breast cancer treatments. But remember that 30% is of those who get metastatic disease. It is not talking about early stage, non mets cancer. But brain mets can be treated with radiation and surgery as well.

EDIT: I think Carboplatin also might cross the blood brain barrier too.

lago - I agree, some places do better than others. My initial discovery of the problems was long ago in comparison. However, I expected my Seattle cancer treatment center to do better by now than it has. I narrated somewhere on this site previously that 2 years ago I attended a "newbie" session presented at my cancer center by an oncology nurse, and made sure I was supportive in general of the nurse's presentation since the one other patient attending besides me was triple negative. I spoke afterward with the nurse about the un-forewarned issues post-chemo, and it was her position that such outcomes are rare....(!) The same response has been made to me by a physician who happens to be a no-chemo-recommended patient who has dealt with post-chemo patients. Are they in denial or am I, or are most women simply enduring it in silence (which doesn't allow any efforts toward solutions)? At any rate, the onc nurse recommended I make an appt for counseling at the cancer center psych office. I called and was told that they are unable to see patients who have no recurrence who are more than 2 years out from tx. A great way to limit complainers to those who have yet to get to the point where they realize how permanent these problems are. We do not exist.

Those who seem to be affected by these problems are not the younger patients (although part of the problem is that for us it seems to occur when we are doing quite well and not yet decrepit... mostly maybe those in their 50's at time of dx???)

I too am in a long relationship of 40 years duration...  and my sweetie is also tolerant but we are both disappointed. I also find that with loss of libido it doesn't just affect sexuality. For me the loss of estrogen/libido has also reduced the enjoyment of other aspects of life in general. Drugs for this problem have not been helpful in the least. I do think it results in the need for some anger management that is self-destructive as well as somewhat annoying for others. Initially I thought perhaps adding more physical exercise would help to work some of that off, but after several months of that I felt worse and was dealing with additional physical damage to joints. I do think the existence of the problems need to be openly acknowledged so that it is more possible they might be addressed. In addition, it is true that the majority of bc patients are diagnosed over the age of 50, and although many of them fortunately are treated with the less-sexually damaging treatments, there still would be a rather large pile of us out there. 

In an effort to be transparent - the majority of my problems regarding the lack of libido/spontaneity/etc. stems less from chemo and more from hyst/ooph.  My SE in this area long predated my BC diagnosis, but were instead side effects from that surgery and "surgical menopause" at the age of 45, which was 12 years ago.

Lago - I actually used the 'beware Dr. Google' admonition on another thread here fairly recently myself . I belong to the HER2 forum that I provided the link from and my background is in nursing. I will be careful



LeeA - thanks for the info on tweet deck

GrandmaV -Sorry to hear you are still suffering from the tinnitus.  I still have it, but it has diminished in intensity.  I have learned to block it out, for the most part (except when I think about it, like now, LOL).  I sure do hope you can train your brain to block it out better.  It's probably much louder than mine, which would be difficult indeed to ignore. 

TonLee - regarding not being able to build muscle mass...I have become prediabetic due to the high dose steroids I received during chemo last year.  My onc thought I would recover, and it would go away, but no such luck.  I am reading a book about diabetes, and it talks about how those who have insulin resistance have more difficulty building muscle mass.  So, just a thought - have you had your a1c checked?  All of my regular glucose screenings have been normal, but my a1c showed me as prediabetic.  I have no symptoms (except some mild thrush still continues 1 year post chemo, most likely due to my elevated sugar levels).  So it is quite possible to be prediabetic and have no clue.  I am checking my glucose now after meals and learning exactly what spikes my sugar levels.  It's an eye opener.  I can't even have healthy carbs.  Steel cut oatmeal spikes me way up into the abnormal range. 

If I can't get it under control with diet I will be considering Metformin, especially since cancer recurrence risk is elevated for those with diabetes. 

lago, SpecialK and anyone else who has had ALND surgery, please tell me what to expect in the way of pain and recovery. BS says I will be in the hospital overnight, have drains for 10 days or until output is less than 30cc per day and be able to go back to work in 2 weeks. Both my mom and my daughter want to come and take care of me, but before I call in the cavalry I want to make sure it is really warranted. I tend to be an independant person and am not sure I can handle all the mothering, but I remember after the BMX I could hardly do anything for the first week. DH will be here to help and he is great with cleaning, laundry etc. Not so much on the cooking though.

Lago -Good info about nurse possibly coming to me for the Herceptin...thanks..I will look into that. Also thanks for brain info...not looking to borrow trouble but that seems to be the ONLY part of my body they didn't run on me so my mind is running amok! ;-)

I started tamoxifen on April 1, and so far so good - well, until tonight when I had my first side effect. I had charlie horses in both calves (not at the same time, thankfully). My MO listed that as a possible side effect, but he didn't explain WHY tamoxifen causes Charlie horses. Anyone know the mechanism? Maybe if I know what is causing it to happen I can do something to prevent them in the future?