MIDDLE-AGED WOMEN 40-60ish

DragonGirl

OK...now I get it....the squishing....

Meece

Good news, HNS!

elimar86861

DragonGirl, welcome!  Don't worry, not everything on this thread is an inside joke, but with a thread going back as far as this one does I guess a little comes with the territory.  Best for Newbies to just jump right in.  Your family really has been hit hard by this horrid disease!  I do think there are genetic factors that still need to be unraveled.  So, where have your mets been found and what maintainence are you currently doing?

barsco1963

Welcome DragonGirl - glad that you stalked RK long enough to find your way here. Some great advice for HNS. Of course we all feel guilty about some part of this damn disease. Did we do something we shouldn't have, did we not do something we should have, did I wait too long to go to the dr, am I now doing the right things, did I  pass a gene mutation onto my children? And the list goes on.

When I was tested it was discovered the the gene mutation came from my Dad, not Mom like we had thought. I thought he would be upset as he was quite saddened by my dx. Turns out he feels kind of special as there are only 2 other families to have reported this specific mutation. lol - go figure.

Anyway  -glad you have found us. We certainly have a "no holds barred" attitude which you will discover soon enough. Look forward to getting to know you.

barsco1963

Seems to be a quiet Saturday here on the boards. Hope everyone is out enjoying the day.  It's a long weekend in Canada (May 2/4 as it is commonly referred to) which is the unofficial start to summer and traditionally the weekend that one plants the veggie garden. I have peas and beans planted. Have to get some seeds yet for the rest of the plot. I putzed around a bit in my flower beds today - was great to finally get into clean them up a bit.

Now I am sitting out on the front porch - the same one that the bbq was ejected from only 1 short week ago. It seems so peaceful now. Birds are singing, the dog is wandering back and forth, the air is still and off in the distance you can hear a rooster crowing every now and then.

Well off to see if DH has repaired the bbq back to working order. Going to try steak tonight.

DragonGirl

Hi back to everyone and thanks for the welcome!



Elimar, I guess my blurb at the bottom if my posts is sort of short. I was DX at stage IV in 2005 with mets to the spine. I had a car accident, then a sore back, waited quite a while then got an xray and BAM. I had no idea at the time about the possibility of getting this, had some calcifications before diagnosis, but was so young that after a six month follow up on that there was no surveillance. I didn't know it was in the family then.



Anyway, I have mets throughout my spine (every vertebrae at this point), as well as mets to my hips and femurs. I had liver mets two years ago but had Xeloda then and it knocked them into submission. So far so good on those, however my spine is currently "hot" and I just switched from navelbine to Aromasin/Affinitor (the combo was not approved back when I tried Aromasin alone). We figured now was the time to give it a go since things are progressing slowley. Abraxane will be my next step if this doesn't work. I've been on it only a week at 5mg of Affinitor and so far so good. I think I might have the beginnings if my first mouth sore...oh joy.



Wow Barsco, seriously only two families and they know it is the cause of your BC? What gene variation is that? I think it is kind of cool your dad looks at it that way. I get that. I was DX at age 39 and was a novelty at the chemo clinic here. I seem to be my onc's wunderkid since I had Avastin/Taxol before the FDA even approved then disapproved it. I had a five year long remission with that treatment. So, I feel sort of special too.

Elimar, so far I've had: Tamoxifin, Taxol/Carboplatin, Avastin/Taxol, Femara, Aromasin, Fulvestrant, Xeloda, Navelbine and now Affinitor/Aromasin. That sorta sums up my BC story.



I know some of you guys are early stagers, but don't let me scare you! And for you other Stage IVs that have not been at this as long, I hope my story gives you a little pick me up. I have had the benefit of some really good doctors (I have a guy at Sloan Kettering that advises me for free...I have only actually seen him once...when he suggested the Avastin/Taxol..but whenever I call he gives me his two cents about my treatment) and my onc here is the bomb. I've been very lucky but also tenacious about learning a lot about this disease, insurance matters, how to live as a medically bankrupted poor person, and how to wrangle the healthcare system, and I think that has paid off. (On the other hand, I am probably my doctor's worst nightmare. I am not a health foodie person...Mrs. Stouffer and I are good friends, I don't get enough sleep and stress is my middle name.) Go figure.



Barsco, your back porch sounds glorious. I on the other hand, spent the early half of the day snoozing and later tried to sit in my living room and read, but the old coot that lives above me keeps his TV so loud I can't concentrate on anything! The bastard has a hearing aid, he just refuses to wear it. If I complain he says he feels like he is living in a prison. He is 84, still works as a maintenance man at a church, and climbs two flights of stairs to get to his apartment every day. I secretly want to assassinate him!



Too rough?







DG

barsco1963

DG - yes, only 2 other families that they are aware of with the same mutation. However, they are NOT sure that it is related to my bc or not as there is not enough documentation. At this time they are not going ahead with testing of siblings who would like it. At the same time, at least we know that there is a variation of some sort and that going forward my siblings will need to be vigilant with their screenings and be aware of any changes.

elimar86861

DragonGirl, thanks for sharing your story, quite different than how most of us discovered out B/C.  You must have been shocked to find out what was at the root of the back pain.  The fact that you have a good team of docs is key and I hope you can get some remission going on in that spine of yours. 

Yeah, this thread has a mix of Stages and we have never belabored the divisions too very much.  Without ignoring anyone's actual stage, we just focus on the woman as a person and go from there.  With everything you have been through, I'm sure you have a wealth of information and we are more than happy if you share it on this thread.  We have cancer.  We have lives.  Sometimes we talk about the cancer.  Sometimes we talk about our lives.  It's all good.

What about a pair of earplugs?  Your neighbor is keping you in prison, a noisy prison!  (And does he fall asleep and just leave it blaring at all hours too?)  It would drive me crazy.

barsco1963

Just came across this video on fb. I know it is meant to be directed at parents & preschoolers, but I thought it would fit here also. I dedicate this post to all of my sisters who, having no choice, have lost their hair throughout treatment. Although we know it is all part and parcel of this damn disease, we really do love our hair. 

https://www.youtube.com/watch?v=enpFde5rgmw&feature=youtube_gdata_player

jocanuck1951

You are very funny DragonGirl! Thanks for your info, I'm a liver lifer as well, sounds like you have a great team....very smart onco, your living proof!



Barsco, followed the link and can't get that damn tune OUT OF MY HEAD now!! Lololol!

Sitting here with bits of fuzz.....cloudy cool day over here....



Xoxoxox Jo

Sherryc

Diana Sorry to hear about your daughter.  Hope everything turns out OK.  Did you every get genetic testing done?

Eph3_12

OK DragonGirl-I'm ready to come help with that assasination!  I HATE it when people have hearing aids & then refuse to wear them!!!  It's so rude. Your story was very inspiring & I love your sense of humor==you go girl!

MinusTwo

Barsco - thanks for sharing the Sesame Hair video.  Certainly relevant.

Dianarose

DragonGirl-Welcome and  thank you so much for your kind words. I just love my daughter so much I don't want her to go through any of this. I remember yrs ago walking with my dad out in his field and when I looked up he was crying. When I asked him what was wrong he replied, "I love you so much it hurts". I now know what he was feeling. I really miss him, but I am glad he didn't have to watch me go through this the 2nd time as it would have broken his heart.

Your family has sure been through a lot with this whole BC crap. You are a strong lady.

Barsco- I have been meaning to ask you if your hair is naturally curly. Mine is like that now from chemo. I have finally got some sort of grip on it by using a Moroccan oil. It makes it so nice and soft.

Eli- I am glad you still have your sense of humor going through all the crap you got handed. When I start to feel weak and depressed I just come here for a laugh or a smile. Thanks!!!

Sherry- They are making my daughter go to counseling before they will do the test. It pisses her off. She is a nurse and says it's a no brainer.

Is anyone taking Metformin? I started a week ago and I seem to get tired about an hour later. I am not sure if it's the meds or because I am making sure I eat when I take it.

Hope everyone has a good night. Diana

elimar86861

Dianarose, I do hope your daughter gets prompt attention with the MRI, and that it does not turn out to be a malignant condition.  With her nursing knowledge and with your range of experience, I think the two of you can navigate through this and good for her for not taking "no" for an answer.  Let us know when you find out her results. 

Sheryc, How is your recon holding up now?

I feel like I am destined to become one of the hearing aid people...too many rock concerts while growing up.  I already seem to want the t.v. volume up a notch or two higher than everyone else.

macatacmv

LOL, about the hearing aids. I went and saw my PCP last week. When I got home my DD asked me a question. I said what? She said that proves my point!!! The question was "Did you ask her about hearing aids?" (I always use the closed captions option on the tv.) The answer was "No, I forgot."

Here's another funny story from this weekend. My DD and I were going to go grocery shopping, but we were hungry. so we stopped for a couple of slices of pizza. We parked right out front, my DD was on the phone so I went in to get the slices. when I came out I was balancing the two paper plates on my arm and I tried to open the car door and managed to drop both slices on the road beside the car. I was already laughing when the owner of the take out place ran over and said "oh, give me those, we recycle here." By now I am in hysterics, leaning on the car. He says get in the car, so I obey. Then he brought us two (I think) new pieces, and handed them to me while I was already sitting down. I can amuse myself so easily!

welcome, dragongirl.  

Hope everyone had a pleasant weekend.

DragonGirl

Dianarose,



Oh geez, for the love of god! That really is stupid but I suppose it is good for the most part that they do offer that counseling....hopefully it will be short!



Barsco....thanks for that...first chuckle of the day (it's 12:01 AM here).



Eli3_12......come on over! I've tried earplugs but it is this constant thumping and droning noise that gets through those too. I can only hear it in the living room thank god, so I'm often relegated to the bedroom early in the evening of I want to read. It goes on all day, and stops around 10:30 PM. I think he falls asleep in front of the TV. But THEN, he moves to the bedroom which is directly above mine. His bed squeeks, he refuses to put down any carpets at all on the hardwood floors, and he gets up to pee like 5 times a night. Then, at around 6:00 AM, he rises and drags the bed from against the wall to make it, then drags it back in place. On the days he goes to work he dons his work boots and clumps around all morning, then keeps them on when he arrives home that evening! Yes, I AM the one in prison!



I was thinking of cutting his cable TV line just once, just to listen to him try to figure that out. It could take DAYS for Time Warner to come! The ironic thing is I live in a complex full of Chinese graduate students who are quiet as mice. He's one of the loudest people living here! I bet the landlord thought he was doing me a favor by not putting a student up there, but the students have always been far quieter in my past experience before he moved in. Plus, he has the worst halitosis you can imagine!



Oh well, it beats the hell out of the HUD subsidized apartment building where I used to live. That was cheap but full of cockroaches (of both the insect and human variety), mice and bedbugs. YUK!

barsco1963

Dianarose - my hair is naturally curly. I keep it under control with lots of mousse. Haven't had chemo so not sure what might happen if I ever do. Pretty sure the grey will take over though. Will be sending up a prayer for your DD that all tests come back clear. The counselling may seem like a waste of time but it is all part of the process. I found a lot of it to be over my head, but did learn quite a bit.

Dragongirl - maybe you can convince the old man to give his hearing aids to macatacmv.

Eph - let us know when you are planning a "Silence the upstairs neighbour" intervention. I'm sure more of us would love to come and help out - or just watch (heehee).

Mac - I sure hope it was the paper plates he was recycling. Too funny. Very nice that he actually gave you 2 "new" slices to replace the upside down ones.

Don't mean to brag but...................... my weekend is still going! Long weekend here in good ole Canada! However, tomorrow morning is going to hit me like a ton of bricks.

Eph3_12

Barsco-I have a 3 day-er this coming up weekend for Memorial Day!  YAY!

elimar86861

B/C apparently not sexy enough for Victoria's Secret.

Petition of 120,000 doesn't sway them, and making the custom bras is "too scientific," but they do seem to like Komen.  Hunnmph!

barsco1963

I never was a Victoria Secret fan.

Loral

Me neither, the bras look uncomfortable and too fancy.......

Eph3_12

Dang it! You forgot to tell me to wear a hat!

Sherryc

Eli, Ithink the radiated breast is bottoming out again. ugh.  I called today and made an appt for June 19th.  Thought I would feel better if the PS took a look at it.  It still looks good but lefty is definatly lower than righty.  After my revision surgery they were perfect.  But not in any pain and I look great in my clothes and my bathing suit so I am going to enjoy the summer.

The talk of hearing aids reminds me of my house.  DH is hard of hearing and refuses to wear his hearing aids.  Thank goodness he will wear wireless headphones to watch TV so when I get ready to go to bed I plug them in and hand them to him.  That is is sign I am going to bed. haha  If I want to read the same thing and go to my bedroom.

Does anyone have big plans for this weekend.  Going to my son's in West Texas as my DGD is having a dance recital.  Looking forward to seeing her dance.  She is six and loves to put on a show.

DragonGirl

Barsco,



Those bricks.....they're down here....please come retrieve them.



DG

Dianarose

Got my official date for my exchange and oophorectomy, June 5th. Wasn't prepared for the date to be that soon. Very stressed about another surgery. Just when I am feeling better I will be feeling like crap again. Seems to be a pattern.

Question with this whole brca testing. The doctors ask about breast cancer on your mothers side and when you say no you are told there is no need for the testing. It can come from our fathers. My dad died from cancer, his 2 sisters and 2 of his brothers. My nephew died at 3 from cancer. How are they determining who should get tested??? Although most men will not get breast cancer they can pass the gene.

Barsco- I only bought one VS bra and it was so uncomfortable and way over priced. I never had the right body anyhow.

I have to work all weekend. I hope someone has some fun for me. That would mean double the drinks and cheetos for someone.

marlegal

Diana, I had the genetic testing and there was no prior bc history in my family at all. I was in a clinical trial for my chemo, so I don't know if that had any bearing or not. As the mother of two girls, I was eager for the test. Since I had already had my own dx, my insurance did pay the cost of the test. I hope and pray for negative results for dd.



Lots of extra work hours lately cutting into my fun computer time. Hopefully not for two much longer.



Heading to our trailer at the Jersey shore from noon Fri till Tues. I am sooo ready for a break. Will prob work a few hours on computer while away, but it will be at my convenience.



I hate having to skip reading a page or two when I come in less frequently. I miss the extra laughs and I miss the daily updates. Of course my swiss cheese brain doesn't retain a lot of that info anyway,but i can pretend

barsco1963

Dianarose - It was found that the BRCA mutation that I have WAS passed to me from my dad (much to the surprise of the counsellors) There is a great deal of cancer on your Dad's side. Did they ask about it at all? Might be a conversation to have with your dr so that he/she can see the whole picture. Will be with you in your pocket on the 5th. I guess the sooner you get in, the sooner you get out right?

Sucks that you have to work all weekend. However, I have been eating enough Cheetos of late for all of us. Once that bag is open,those poor little orange morsels don't stand a chance.

Marlegal - sounds like a trip to the Jersey shore is just what you need. Relax and enjoy. Say hi to Snooki and the gang for me!

elimar86861

Dianarose,  Your dad's side does have a strong history; the only thing I can think of why they might not feel the need to do BRCA testing is it might depend on the KIND of cancer all those relatives had.  If it was not breast, ovarian, and prostate, it might be less likely to be linked genetically.  I have never come across the actual guidelines that determines who needs testing, and just from reading it seems to be another one of those "at the discretion of the doctor" kind of deals.

Have a good time marlegal.  I would dearly love to be headed to any seashore this weekend, or anywhere, really.

Sherryc, The PS can give his professional opinion, and I hope it does not mean more surgery for you.  Also, I hear ya.  Even if something is needed later, let it wait and enjoy the summer.  It is so destructive to our delicate psyches to have non-stop scheduling for all these kinds of procedures all the time.  We just have to give ourselves time off, and with recon there should be no danger to give yourself a summer break.  Enjoy all the dancing this weekend. 

DragonGirl

Dianarose,



I can not answer your question, however, as I recall the Memorial Sloan Kettering Website has extensive information about the genetic testing protocols. My suggestion would be to seek further information from a reliable source and bring what you find to your doctor. Then discuss. At the time I was diagnosed I had no knowledge of any breast cancer history in my family. My maternal grandmother, I thought, had died of ovarian cancer.....turns out it was vaginal cancer. My paternal grandmother died of colon cancer. I don't know why I passed the litmus test, however, I was quickly instructed to see a specific doctor who specialized in genetic testing, and get tested. I have concerns that much of what goes into determining whether some women get tested or not is some ignorance on the part of doctors who don't keep up with the current literature, as well as concerns about insurance costs (some doctors that participate in HMOs for example, are discouraged by insurance companies from ordering costly tests). I'm not saying this is what your doctor is doing either way, I'm just stating that it is important you be a well educated advocate for yourself and your family. Can you make an appointment to consult with such a specialist on your own? If so and insurance covers the initial visit, I say go talk to the specialist no matter what you find on the internet. The genetic research is changing so quickly!



Subsequent to being diagnosed and getting tested (BRACA negative) I sought a second opinion regarding treatment at Sloan Kettering and happened by chance to pick a doctor that is a pretty well known specialist in the genetics of breast cancer. If you PM me, I will give you his info. Even if you don't live on the East Coast, his office staff are really nice and they could probably get a name for you from the doctor for someone closer to the area in which you live.



Turns out I do have a genetic mutation called the Chk 2 variant which predisposes one to have a 20% chance of getting BC. This variant is as far as the research so far, not related to the BRACA mutation. I only know I have this because I received more extensive genetic testing through 23 and Me as part of the study they are doing with the manufacturer of Avastin. 23 and Me does provide this testing without any prescription (but they do NOT test for BRACA) for about $99.00 You send in a saliva sample. You could Google their website. Remember though, they DO NOT test for the BRACA gene.



I had never heard of the Chk 2 variant before I received my results. I did some research into it, as you have to beware that the information 23 and Me provides, comes from perhaps a limited set of data/research and may not always be necessarily valid or reliable in the entire scientific community's opinion. However, as it turns out the National Institute of Health's webpage on genetic testing, also a very good resource, confirmed the information that 23 and Me provided as to the Chk 2 variant. My doctor is skeptical about the usefulness of that research. It has no real clinical application right now, there are no drugs designed specifically to target the genetic mutation I have. Affinitor does disrupt the mtor pathway (a chemical pathway that takes place during cell replication and cell apoptasis (cell death). As you know, cancer is just cell growth and replication gone awry, will normal cell death being disrupted. So, in my eyes, Affinitor is a good choice of drug for me because the protein that Chk 2 encodes for is part of the mtor pathway. As I said, there is no clinical or research evidence to show that this drug will help me because I have that mutation, but I figure it COULD, so why not try?



I digress and probably got way to scientific for most folks here. I have a background in science so don't feel badly if none of that makes sense to you.



My point however, is that I do try to read and understand what I can, so that I am as well educated participant in my care as I can be. I love my oncologist and he has seemingly always been right with his advice, however, I read and check up on him all the time. He happens to be a great guy who will admit if he does not know the answer to my questions and will read whatever I bring to him for review. He is fine with my seeking a second opinion whenever I want and will talk to the other doctor if I so desire. He does seem to keep up with the current research but not all oncologists do (my very first oncologist, god bless him, he was a good man and in his time a very good doctor, but by the time I got him he was old and not keeping up....he did however correct his won initial mistake regarding my first treatment plan). Bottom line, never be shy about double checking what you are told or seeking a second opinion, even if you think your oncologist is a living God! If he really is that good, he won't care what you ask or if you question his judgement or decisions.



I hope I didn't confuse you! Do some reading, and look for a specialist in your area to consult on the BRACA testing. Know that there is all sorts of other research being conducted and that BRACA are only two mutations that they have been able to find, there are more lurking out there no doubt. 23 and Me can be fun if you check out the website you'll see that they are generally directed towards providing genetic profiles for people interested in their family tree and so on, but some of the tests they do is relevant to BC, and other cancers and other medical problems. BUT, if you decide to and can afford to get their testing don't assume the results will have any real life value to you right now in terms of treating your BC or knowing with real specificity your daughter's risk of getting BC.

This is why they require the counseling prior to getting tested...BRACA negative does not necessarily mean one is genetically free from BC risk. The science is still in its infancy.

Again, PM me if you want that info.

DG