TRIPLE POSITIVE GROUP
Comments
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Lago..I am sorry to hear about the job. Not that the boss was crazy and the place odd but that you were hopeful and enjoying yourself in a work environment again. I am sure that better things are on the horizon.
I started Arimidex yesterday. My bone scan was strong. So for now, here I am. 5 more months of Herceptin. I fell good. Joints ache, shrug, what can I do..
Glad you are all well.
Fluff really happy for your news.
Linda..you sound good also.
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SpecialK-congrats! And you too almost Lago. Sorry about the job. My last position, I was v.p. of new business development. Great job. Our president left, and a new one came in that was really good also. However, I decided I wanted to go part-time, so gave up the title. She put a person into place that two of us on staff had been responsible for recommending two years before that. Once on staff, we realized why the other place had let her go. You are right, Lago, you can hide crazy for awhile. It was a terrible year in which she barely acknowledged my marketing event counterpart and I. She liked to boss around the young kids. And she was threatened by the fact that most of the sponsors continued to call us, and not her, so we would have to go to her saying we had talked with them. Put her over the edge, lol. I left after a year. I was planning on changing anyway, just moved it up by about a year.
And, she wore suits with white hose. Seriously. This was in 2006. Felt like I was back in the 80s. Wasn't even sure where she found them.
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My now former boss's image was a mess. She did not look like a manager and she certainly was paid well enough to have her clothes tailored so the fit properly. She looked like she slept in her clothes.
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Update
OK, I think I have "got it". Directly after chemo, that day, I am a little hyped up due to the steroids and benadryl they give me as pre medications. Day 2 not so bad, feel fairly normal. Day 3-12 were really really rough. I had bone pain, generalized
weakness, fatigue, N&V, other lovely things that will not be named,
and it was all complicated by a lovely UTI. So, I have a plan0 -
I do believe some women are cured. I love hearing stories of those that are 20+ yrs out without a recurrence. I usually think of those that are diagnosed as stage 1a have the greatest chance of being cured. Although there are plenty of stage 3c that are 10+ yrs and are doing fine. It was just weird to hear my MO talk about going for a cure for me. It's not a conversation I've ever had with her or my other MO. It makes me feel good to hear it.
Lago, bummer that you have to find a new job. I had a job years ago where my new boss was CRAZY! They brought in someone new and had the other one step down. Not sure why. There were several of us that quit about the same time. You don't need the stress from that job.
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violet..I had a rough time with TCH too. My recommendation is to stay supremely hydrated. It makes a huge difference. Just an FYI..I am through.. surgery, chemo, rads and now on to hormone tx. I am getting my hair back and my nails are all back too. I run and bike and weigh less now than when I started. I gained about 25# during treatment with steroids and swelling from water retention from Taxotere. If you experience that, don't freak, I wanted too but tried to keep calm. When I was done about 3-4 weeks later I started training well again and lost all that I had gained and then some.
Best regards....
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Special, Congrats on the 4 yrs!! I'm certainly glad you triple +++ ladies are still here to help us newbies out!!
Fluff, I have to stop wearing my white hose? Seriously??
Linda, I am more than willing to treat this as a chronic condition. I'll take my pills, exercise, and manage my diet and weight. These are things that I need to be doing anyways.
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VioletKali we talk about everything here including the big D (diarrhea), Big C (constipation), hemorrhoids, UTIs, sexual dysfunction etc. I think the grosses thing I ever discussed was what was going on when all my nails lifted, oozed and smelled… I posted gory photos too
Thing is once you know what your SE are after the first TX you can treat knowing when it will happen. I got the big C. OMG I tried everything. I ate so much roughage but still didn't go. So bloated. Finally solved it with Metamucil. After that I started taking the Metamucil the night of chemo and continued till things moved normally. I still was a bit slower but I did go everyday.
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VioletKali!
Lago is soo right! We let it all hang out here. Speak up. Chances are very, very high that some of us have lived it and that it's already been hashed out in this forum.
Lago
Bummer about the job. Not that it helps you but everyone I know seems to be having job issues.
Had my first phone Interview for the Whip survey on BC survivors' issues with hormone therapy . 45 minutes .
Much, much more than just hormone therapy. Very personal stuff . My point is that multiple times during the 45 minute interview she asked " do you have someone to talk to.. To support you.. To help you...? " and each time This forum and BC.org came to mind!
I cried....
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Violet, I'm about one round ahead of you and I can say that round 2 went better than round 1. I knew what to expect and was able to get ahead of some of those things. Constipation was a big deal first time. Second time? Not at all. Same with really dry skin, and some nausea first thing in the morning. Neither of those was a problem this time. Keep notes to yourself and talk to your dr. or nurses. I'm hoping for you that round 2 goes better. And I agree about staying VERY well hydrated. I think that really helped me out.
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Violet like cassiecat said keep a diary with dates on when the SE started. I still have mine. I brought it with me each time. It was great because I didn't have to worry I forgot something… and you will if you don't write it down when it happens and bring it with you.
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I agree with that! I write things down daily, and throughout the day even. I tend to also refer to my days as day 1, day 2, etc. Makes it easier for me to go back and compare what was happening when, cycle to cycle. If I take a med of any sort, I record it, as well as side effects, my mood, if I got out and exercised, etc.
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Specialk and Lago...CONGRATULATIONS!
I'm so happy about your 4year milestone....I'm doing a happy dance and can't wAit to be there myself. I'm almost at 15 months....every day is a gift for me. 0 -
Some great news regarding Perjeta and survival in metastatic breast cancer! Not gonna link because there are so many stories...
Be hopeful everyone !
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thanks Girlstrong. There are many others that were here (including the one that started this thread) that don't post anymore that are doing great, and living life. Just remember that just because you don't see them posting doesn't mean they aren't celebrating and living life.
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Good riddance Lago on the job! We sure have wonderful perspective now on things just not worth our time, don't we?! You will find a good fit for you.
Just in a Her2 research news update: I was in the Neratinib trial. It was supposed to last a year but diahrrea (sorry) was horrendous so I stopped after 6 months. Then the company sponsoring the trial changed hands. Long story short, the coordinator called me this week. They asked to monitor my progress once a year for 5 years. The study results apparently were quite exciting, and extended recurrence free times.
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Hi all,
Oh Fluff, I'm doing a happy dance for you... wearing white hose, of course. And if I had hair, I would rat it out, spray it with some AquaNet, and crank the Bon Jovi
Lago and SpecialK, you're an inspiration for us newbies here! CONGRATS! I just finished my 12th Taxol on Friday. Leg hair fully intact. Dammit. But so happy it's just Herceptin every three wks now. One more box I can check. Next up is surgery to get these TEs out.
I did have an echo and my heart is still within normal limits but it did drop a bit in function. Did anyone here have cardiac issues with Herceptin but now resolved? I'm really active-- running, hiking, backpacking-- and I'm feeling a little scared. And I am not thrilled to start Tamoxifen. MY MO wants me to take it for 10 years!
Welcome Geishagal! I did the 12 wks T/H with a 1.3 cm tumor, Stage1, and a BMX. My breast tissue was dense and super lumpy (doesn't that sound so pretty?) and the tumor was missed on my mammos, even though it was so close to the skin's surface I easily (and thankfully) found it. So that's how I ended up with the BMX. Good luck; this forum is an amazing source of support. And Pbrain has it right-- don't neglect your mental health. At times, the physical SE can seem easier compared to the emotional roller coaster that this diagnosis can feel like on some days.
Hope all had a great weekend.
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Marineswife I had a MUGA before Herceptin. I have no idea if there were issues but since I didn't report any they thought I was fine. It appears most to recover and those who don't are in the minority. As far as 10 years. Take one year at a time. You can always revisit. Who knows by year 5 they may have something better with less SE.
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Thanks all for the congrats! I stay here on BCO because it was a lifeline for me too and I want to be that for those coming behind me - and the friends I made here will always "get it" - I was very blessed to have great supportive friends, but those who have shared this experience will always understand at a level others can't.
marineswife - I had quarterly echocardiograms and lost a bit of function, but never fell below 50, or lost more than 10%, so never had any delays or breaks in Herceptin. I had an echo after I was completely done with Herceptin and the EF number had come back up. I think it is pretty normal to have a small decrease, and the number is also subjective - the person doing the exam has an effect on the EF number, so don't worry too much as long as you are still in a normal range.
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Shoot, nothing tasted good at all. I tasted METAL until recently. I also had some N/V too. I lost 5 pounds..
I take a diuretic/ACE combo for HTN, genetic, so maybe I will not swell as terribly. I am not worried about weight gain too much, if it tastes good I WILL eat. I am a cancer fighter, weight does not matter much right now. (I am really active though in general..so this mindset is tough)Did your platelets go low? I had lab work today, Platelets are 22,710! As a Nurse, that makes me just AACK.
I will stay super extra hydrated.
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Violet try adding some citrus to your food/drink. It might mast the metallic taste. Also get plastic utensils. Special K answered your other question about platelets on the other thread
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Violet I had pretty awful taste issues with Taxotere - everything tasted like a chemical for me, even the air smelled and tasted like a chemical.
I had a bit of relief by drinking through a straw - it might help.
Food - well not much tasted any good, but for me hard boiled eggs and chocolate icecream!
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Violet, I experienced the same horrible taste in my mouth. I used orange Gatorade, Campbell's chicken noodle soup & Banquet chicken pot pie. I'm 6 weeks PFC and still anemic. I am also still dealing with swelling too.
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violet... I did not ever have low labs. But I did get neulasta each cycle. I did however have s 5 gr Hgb drop. It recovered nicely and all labs have been normal for some time.
Yes, perhaps your htn med will help. Hydration has a serious impact on how well you tolerate the chemo I firmly believe. Work at it. Lagos citrus suggestion helps. Anything to help a bit with the tastes and to get the fluids in.
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Hey all - you know that the news is big when it shows up on FB feeds LOL. The trial data released on perjeta in combo with taxotere and herceptin is really all over the news. This is big stuff!! Had a friend even post the info to my page and our local news even covered it. Are we getting close to a "cure"? I sure hope so!!!
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Linda, is this the info I read about the increase in OS for metastatic?
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Mommato yes the news is focused on Metastatic but this is a good sign for early stage. Seems more of us are cured with Herceptin but they didn't know that for sure back in 2006 when it was FDA approved. I mean it's still hasn't been 10 years since approval. They have been testing Metastatic longer than early stage. So wish they let me on the trial but hey I'm still NED so maybe I didn't need it.
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Is there any talk of getting it approved for early stage? I was in the neratinib trial. and they just told me the results with early stage were good so they are continuing to stage 4 with trial. I think perjeta works similarly by targeting more of the receptor/pathways.
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geewhiz - Perjeta is approved for early stage, but just since last September and only in certain circumstances, although I have heard of some MO who have gotten insurance approval for patients who do not fit the profile. Early stage approval for Perjeta is supposed to be neoadjuvent, for tumors 2cm or larger, and/or node positive. Her2+ IBC can also use it, but as I said, I have seen some people who have smaller tumors get it, and I have seen it used adjuvently.
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I'm one that is getting Perjeta adjuvantly. I discussed it with my new MO and she was all for me getting it. My insurance never questioned it.
Lago, I was excited to see that it increased OS by 16 mos for stage IV. That just means even better news for us! I guess I hadn't realized that it hasn't been 10 yrs since they started giving it to early stage. I can't wait until the 10 yr mark to see what they have to say. Four yrs out is a huge deal...don't think you needed it!
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