TRIPLE POSITIVE GROUP
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Great news Fluff
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I need to share bacause I feel like my head is going to explode...
My oldest daughter is 20 (I'm 46). In the past 2 years the mothers of three of her high school friends (all around my age) have all been through breast cancer. Only one of them has survived.
So before my diagnosis in December my daughter had been to two mum funerals in the previous 14 months. Her best friend's mother had been through it all and was a survivor. This is what we were hanging on. As of last week she has had an explosion of mets and my daughter has just found out this evening and has been told that the mum is not doing well and they have given her a "time stamp"...
Hugs just aren't doing it :-( This is a blow for her friend (single mum family) who is now going to lose her mother, and although I've never even had a conversation with this mum our family are all feeling kicked in the stomach.
My daughter pulled away from my hug. I have no words to give her to make it better. My husband has retreated to his study, and I can hear him sniffing. My 16yr old son has retreated to his bedroom. I'm sitting here feeling like my head is going to explode with emotion...
Three out of three women we know of lost. I'm the fourth we know of. We needed better odds :-(
So sad.... Jenn0 -
Hi Jenn....
I know those sound like "horrible odds" but in reality all three (and you) probably had totally different breast cancers and were caught at different stages.
IIa was still considered early breast cancer in most oncologist's eyes. Perhaps they were found at stage IV?
I had a High School-er and a son in University at the time of diagnosis. It was very hard on them as well.I am very thankful they didn't have friends around them who had mothers that died of BC. That would've made it 100 times worse.
Hang in there XXXX
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Fluff--WOOHOO!!!! I am SO happy for you woman! SO very happy. Praise God. That's right I said it!! WOOT!
Nora, My periods came back too even though they were sure they wouldn't. I just had an Ooph, which is one of your options. For me being over 95% ER/PR I couldn't risk the chance Tamoxifen wasn't working, or was working but wasn't enough to compete with my hormones. Then I found literature that showed a 30% recurrence/survival benefit to pre-meno women who have an Ooph or Lupron (yet another option!)
You know what's really weird (and probably TMI)...my periods all my life have been crazy....didn't start till I was 17-18ish...then maybe once a year, or be "regular" for a year or two...I had to get on the pill to force them to be regular (which I now regret after reading all the literature talking about BC link with long term pill use..and I used it for 20 years!!)
Anyway, on the Tamoxifen, I was regular for the first time in my life! Even better than when I was on the pill!! Every 21 days, right to the noon hour....Aunt Flo came to visit. So for 3-4 months I got to be a normal girl! lol And I am SO GLAD I WAS NEVER NORMAL!! I'd bleed for about 10 days and then 21 days later bleed again....It felt like I was always bleeding!
And even tho I had my Ooph yesterday ... guess what? I'm having my last period!!! hahaha....
What test is your Onc running for Tamoixifen metalization?
Tonya
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Jen,
I know exactly how you feel.
When diagnosed the only person I "knew" was my best friend's new husband's first wife. I never met her, but my BF married him a couple years after she died of BC.
I talked with her husband for hours and his wife's cancer and mine were almost identical. Triple positive. It spread to her brain even tho she did conventional tx AND was taking I.V. Vitamin C and a host of other natural things. She was a nurse and really tried to survive.
But in the end, I sit in her kitchen, in the house she worked her whole life for, and I wonder...what type woman will be sitting in my kitchen in a few years? My husband's new wife, will she have her best friend over?
Once in tx I met many women, go to two support groups, one for older women, one for younger, one civilian, one military...and we've lost people (oddly mostly Stage 1ers) and I went down that rabbit hole every time....
All that to say, I understand how you can get to the place where you are CERTAIN you're dead meat. Dead woman walking. Put a fork in me, I'm done.
But you know how I get past it when it comes down and tries to suffocate me? I think, you know Tonya, even if you're diagnosed tomorrow with mets, chances are you're going to live at least a year or two longer.
Then I think, well that gets my oldest to 18, my youngest to 11....and I start filling in the gaps....eventually I get to the place where I think, I'm not dead yet!!
Everyone dies.
Everyone.
I'm just a little more sure of HOW than most people.
BC may kill me, but I won't let it claim the rest of my life.
Shake it off girl. You can do it.
Much love and support your way...
Tonya
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Hi Tonya....
How are you feeling after your ooph? I'm a bit cheesed off right now because last May when I had my abdominal wall repair something was mentioned about having an ooph. I was all for it and they told me they didn't feel it was necessary after reviewing my blood work. I said, "Well, I will already be open if you want to do it, take advantage of it" Just a gut feeling I wasn't done.
I started my periods when I was 14 and was always regular from day one. Must be nice to KNOW you are having your last "period" ever.
I dont know what test it is that my onc is talking about. She had called me back yesterday when I reported to the office that my period had started. She told me to immediately discontinue the anastrozole and that I needed to come in for some sort of blood work up to see if my body metabolizes tamoxifen. Maybe if I dont they are going to do the ooph they should've done last May?
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moonflwr wrote "Lagoon, doing lunged, etc"
OK that had me spitting on my screen laughing (SOMSL). Were you on pain meds when you wrote that?Nora_az didn't they test your esterol (sp) levels for a while? I know my onc did for at least 5-6 months after chemo to be sure I stayed in menopause. Granted I am 2 years older and based on my mom/sister and peri status it was highly unlikely I would get my cycles back just.
Fluffqueen, "I know the likelihood is high that it can come back at some point" Why would you think the likelihood is high. Seems pretty low for someone with your diagnosis. Can happen but I would think the likihood is low.
Jenn Nora is correct. Different people and different diagnosis. Not only do you know not their diagnosis you don't know their treatment. WE got very aggressive treatment with a newer drug. Once you catch your breath you need to sit your family down and let them know this as well as statistically you have great odds that you have won over cancer. Women unfortunately die all the time from this disease. You just happen to know 3 of them but more women survive that are early stage… you plan on being one of them. We all morn when we lose another cister (cancer + sister= cister) but we can't assume "we're next" every time this happens.
I don't p lan on dying from breast cancer. I still prefer firing squad but I dont' think that will be an option. But I'm pretty sure I'm not going to die in the near future. I just don't "feel it"
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Lago,
They did check my levels last April before making a decision on whether or not to do an ooph while I was already open for my abdominal wall repair and told me they felt I was in menopause. They hadn't checked it since then.
Last Wednesday when I went in for my 3 month check up I questioned my onc AGAIN about if they did testing to make sure I am still in menopause and she said she would in 6 months but felt I was in menopause. I told her not to hold her breath.
Sometimes being right isn't best!
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Nora,
I'm feeling great, except (isn't there always one of those?) shoulder pain. They use gas to blow up your stomach and it takes a few days to dissipate. It presses onto the diaphragm which sends it to the shoulders...VERY painful. Feel like I did squats with a bar that was WAY too heavy......
But other than that...not so bad.
The reason I asked about the metabolism test is because my Onc told me there was one out there they had high hopes for, but studies showed it wasn't reliable. So if there is one out there that IS reliable...I'd like to know the name....lol
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oh that gas pain in the shoulders is bad. I had that before. I hope you feel better soon!
I will find the name of the test out next week. I am being treated at the Mayo in Scottsdale, AZ
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Awesome Nora,
If you don't mind...pass along that information! (I always love to go in and say to my Onc,,,, have you heard the Mayo Clinic in Scottsdale is.....lol. He hates that. He usually rolls his eyes and smiles....he's super cute....and has the longest eyelashes I've ever seen on a man...I actually HATED him for that during chemo
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nora - My onc wouldn't say I was in menopause. I was still having periods which stopped after the first chemo about 1.5 years ago. They have measured my estrogen twice and it has been low. I go for another followup next week and will be interested to see if they want to switch me to femara now. I asked about the tamoxifen metabolizing genetic test and they said it wasn't realiable at that point based on some new studies. I also asked about an ooph and they said we could talk about it but then it didn't come up again. I think I am in menopause. They are the ones who want to make SURE before switching me to femara.
Jennt28 - I am so sorry about your daughter's friends losing their mom's to breast cancer and the impact this is having on your family. It is very hard. I hope that you find a path back together quickly. When I was diagnosed it wasn't too long after a much beloved co-worker died of bc. It was awful and she was just a little older than me. My dx hit everyone hard but my dx was also completely different from hers. I have to say though that at first when I told people about it their thoughts went immediately to her and her experience and it brought back all those painful memories.
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Hi, I just have a dumb question. My Mom went for her CAT scan yesterday and we should have the results on Monday. They only wanted it of the stomach area b/c the Pet scan lit up an enlarged lymph node in the Pancreatic region. First, they said it was outside the liver, but from talking to the nurse she said it was more in that region. Is there a difference between lymph node and lesion? They never said lesion, so I am hoping whatever it is, has been caught very early. Also, no other lymph nodes lit up in the normal area where breast cancer usually travels. I know I will have the offiicall answer on Monday, but would appreciate any thoughts that can get me thru the weekend. Thanks.
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Omaz
That will certainily be something for me to ask about. I just know whenever they would proclaim I am in menopause my comment back would be "Don't count on it" Based off ONE blood test given just a month after chemo?
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Fluff....WOOHOO!! I swear, I have been thinking about you nonstop. I am so glad you got the call early...thats a good team you have.
TonLee...I am glad to hear the ooph went well. I just went to a new onc yesterday. I never had BRAC testing and he wants to do it. We are awaiting hormonals too. I have been postmenopausal 2 years but he is still considering an ooph if I am BRAC positive. I like him. He said to up my fish oil to combat hot flashes, I hadnt heard this before. It seems like my hotflashes are getting worse and worse, ugh.0 -
moonflower, I cracked up at your post too! I think we have all been there!!
Ladies, one thing my new onc said was something I have read here before, but bears repeating: if we her2+ ladies clear that 3 year mark, we can breathe much easier. The bulk of the recurrences are in the first 2 years, with some activity in the 3 year window but then after that...consider yourselves cured. I like this guy a LOT!!0 -
Jen and Nora, hang in there. It seems like people can't help themseplves. They will do it. So try to ignore it. Up said TRY, not that I could all the time either. Lago, sorry, it wasn't the pain pills, just stupid autotype that corrected you to Lagoon! LOL . I am still trying.who I was talking to who it changed the name to Herganzovania! , LOL, cause THAT made sense! LOL.
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I haven't had my period for a full year now and my MO (the one I just fired) has never checked any hormone levels at all so I have no idea what is going on with my body. I'm going to my Gyn this week to try to get some answers because I'm having other issues as well. 6 months into Tamoxifen and I'm now nauseous every morning (wasn't nauseous when I started it), swelling in my abdomen every day and still having this back pain (along with the hip and shoulder). I do know that I still get mild warm flashes and have terrible vaginal dryness so perhaps the chemopause is holding...
Jenn I'm so sorry that you are surrounded by such sad BC outcomes so close to home-it really impacts you and your family and your view of this terrible disease. I continue to deal with the anxiety by reminding myself that I've done everything I can and focusing on the positive outcomes when I'm getting bogged down. I head over to threads like "Her2 Positive-Anyone 10 years out?" to get my perspective back sometimes. Still, I admit that when I'm in conversations with my husband about our future plans i.e. travel, retiring, etc (20+ years from now) I still find myself silently thinking "if I'm still here..." But I'm doing it less often these days and I'm actually beginning to become more confident that I'll be around for many years. Never mind what BC does to us physically, it's a terrible head game:(
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Jenn28... we just went to a dance recital last night for my friends daughters. She died of mets recently and her twin daughters choreographed an absolutely amazing program. The final scene had an auditorium of 500 in tears and cheer. The two girls held a candle in the dark to their hearts. I think seeing kids still living well and thriving after losing their mom eases my soul a bit.
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Fluff - how incredibly thoughtful of your PS and BS to call you at the end of the day instead of making you wait until Monday. They really care about you - so awesome! I somehow missed that you found this on the 1 year anniversary of your BMX. That is indeed cruel...grrrrrrrr....bc is a b*tch! So glad you enjoyed those chocolate cupcakes - you deserved each and every bite! Oh and yes, I too love sharing everything and anything here - I know y'all understand and won't think I'm wacko as we've all been on the same rollercoaster and know what it does to a person over the long haul. My friends are fabulous, but I too worry about wearing them out and scaring them away, so I don't share absolutely everything like I do here.
Oh Jenn, that is so heartbreaking and frightening. Hugs to you and your family. Please hold onto hope for your own future - despite seeing what has happened to those around you. I know that is easy to say but very hard to do/feel. I hope that you all can regroup and hold tight together - you need each other's support so much right now.
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Geewhiz, thanks for the scoop on the 2-3 year mark. I had heard it recurs early, but hadn't heard that amount of detail. Thanks!
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Thanks everyone! After I posted here I took an anti-anxiety med, found all the survivor threads, texted my BFF who assured me she's not letting go of me for years, went and gave my husband a big hug and told him about all the Stage IV cisters on here who have been IV for years.
Everything you said made me feel better. I am me, and I'm currently alive, cancer free and doing everything to up the odds of it not coming back! Now if I can just get these chemos done so I can get off the sofa and get lively again!!!!!!!!
Jenn0 -
Oh, one thing about my daughter's BFF's mother... She had her tx at a local private hospital I call the granny hospital. Affluent, older population. No research at this hospital which is why although we use it for emergency broken bones, fevers etc I chose to travel much further to our largest city research/teaching hospital for my tx where even as an early stager I was offered several clinical trials (one of which, the international D-Care trial I am participating in).
I told my daighter to tell her friend that her mother needs to get over to the larger hospital fast for a consult...
Jenn0 -
Hang in there Jenn, we're going to be just fine. I echo what the other ladies have said and applaud your decision to go to the larger research hospital for up to date treatment!0
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YAY FLUFF !!!!
` FANTASTIC NEWS!!!! Your MO and BS are the best!!!!Jennt-- so sorry about the moms passing in your area
I HATE BC!!! We have at least 7 BC survivors in my area and my BFF just finished treatment a week ago. Fortunately, we have not had anyone succumb to this bastard !!!! My heart goes out to yoDragonfly I ditto what you said
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There have been about 30 survivors in my high rise… and we only have 30 floors. Some have passed. One woman is a 36 year survivor.
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Yay, Fluff, awesome team you have going. Tonlee, glad the ooph went well. Jen, hard with kids, I don't know how you ladies with children who are young do it. I will.pray you find the right words. Herceptin is so new, its really been only in the last 5 years that most people have received tx. It changed a lot of things. I plan to survive. You do to. We all will fight like a girl. Much love and small SEs.
Ps, still in the hospital, maybe tomorrow for home. Um, or maybe not. MO stopped in to see how I was doing. Said I was challenging.! LOL. Saw a nephrologist too. Said I should NOT have permanent damage. Whew. You know the mixed up text I did yesterday, almost did it again. The lime was "Tonlee, glad the pop went wellness." I should have left it, I kinda liked it! LOL.0 -
Moonflower--geez... hope you feel better,and can go home tomorrow. I apologize, but I am behind on posts....are your kidney issues from chemo?
Lago--LOVE to hear about the long-term survivors
. Thank you0 -
Bucky, hmm, my MO and nephrologist both said that allmy meds work together, work in any combination, work with chemo, BUT do not work with each other, chemo and ME! LOL
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Moonflwr: so sorry to hear you are still in the hospital. They give us all these meds and we assume that they have checked they are ok together... Hope you feel better soon.
Thanks for all the encouragement everyone. Much calmer here today. I have explained mets to both my husband and daughter. Told hem all the options available to those of us triple positives even if we do get mets. Told them about all he women on here who have mets and are still going... I think everyone feels calmer now...
Jenn0
