TRIPLE POSITIVE GROUP
Comments
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SpecialK and lago - thanks for sharing the DCIS info as it related to your situations. I meant to ask the BS about it and forgot all three times I met with him.
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ashla, re: the coming year - and the psychological/physical effects - I am scared. That's it, plain and simple. I never like to admit fear (I don't think anyone does!) but I would be lying if I said otherwise. Tonight we went to a requiem mass at our church and as I stood/sat there I realized that I first started attending church again with my husband at the very same mass last year. I kept thinking "I never would have thought one year ago that I would be standing here a year later getting ready to have a bilateral mastectomy." But I am and it is what it is and I guess big girl pants and all that.
Exactly five years ago this week my husband was been admitted to the hospital for what turned out to be a month(plus)-long stay. He had to learn how to walk again and at the time I thought "how in the world are we ever going to get through this?" Well, we did - or moreover, HE did, thank God, so here we are again.
I just hope I can handle it with half as much grace as all of you who have posted your experiences on this thread/board.
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Also, because I failed to mention it in my other posts - geewhiz - you're an inspiration!
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Ok, I missed only 1 day and it is three pages. Welcome to the new, sorry you have to be here. to everyone else. Much love.
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TonLee, I do feel like it is going to be a fight to keep any of my nodes. And you put it so well when you said that most surgeons feel any SE other than death are acceptable! I don't want to go thru all of this and then hate my life because of all the SE's I have to live with. For me at least, quality of life trumps quantity of life.
BTW both my kids went to college very close to Beavercreek, and my son lived in Dayton for 2 years after that, so we have been to Beavercreek many times.
MemaSue, thanks for the suggestion of CoQ10 and melatonin, I will have to look into that.
And thank you all for your encouragment! It is ok to talk to friends and family, but they don't "get it" like all of you do.
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Lee A...
Being told you have cancer is scary . It is probably right up there at the top of the list of things human beings fear. I think sharks and public speaking are up there too. Neither of those two bothers me so much anymore. Trying to deny it is a waste of time .
You have lots of time to think before treatment starts . For me at least , once treatment began I was so busy trying to make decisions, staying healthy, eating right, keeping track of appoinments and getting to them, understanding and staying ahead of SE's , tryingto lead a regular life etc...that most of the time fear wasn't in my daily thought process. It will creep in when things go wrong or we have glitches in our treatments . That has happened to most of us along the way.
Very important imho is for you not to worry about handling this with' grace '. You will get through this just as the rest of us have ...both gracefully and not so gracefully.....0 -
Bren...
My BS and MO were 50 miles away . It was a difficult decision in light of the fact my chemo went from November thru February but I felt good about my team at the time...particularly. my BS. As it happened we had the mildest, dryest winter in recent memory and all those trips were made on dry roads. I decided that if the weather looked bad I would stay in a hotel. There is also flexibility on the chemo regime. I took a chance but risked adding more stress to an already stressful situation. Picking the right doctors is extremely important psychologically.
If you read thru the forum you will see many posts devoted to my struggles with the decision.0 -
LeeA we've all felt like you did. I was a bit surprised when I woke up from my BMX. Not as bad as I thought at all even though I was pretty nauseous from the anesthesia (everyone in my family reacts that way to anesthesia). I really feel I did so well on chemo because I kept exercising even if it was just walking. It helped with my energy level. Research points to that too. Drink lots of water too. I wore scarves all the time except for one weekend (wig). I'm finding out many people didn't even know I had lost my hair. They just thought it was my new look.
Go to a "looks good feel better" program (free through the American Cancer society.) Lots of tips on the site too. Matter a fact call the ACS. They have so many free programs for anyone, regardless of income. They can pair you up with someone locally who's been through it too if you want. • 1-800-227-2345
Ashla public speaking is easy so I found out.
Being told you have cancer is the scariest thing I've ever had to deal with… ever.
Granted I don't have kids so there are many scary things I missed in life not having kids.0 -
Morning Lago..
And you did it beautifully..public speaking that is. There is such a euphoric feeling once we've overcome or faced down our greatest fears. There are so many silly things that I used to fret about prior to BC. In many ways I'm more free..more empowered .. than I was prior to dx.0 -
Hi all! Took Claritan instead of my Zyrtec I've been on forever, before my Nuelastra shot, and no bone pain. Yay! Do I take it again today, and for how long? Also, my body is not sure what its doing with this chemopause. Today, again, I am on it. Ugg! Cramps and all.
I'm signed up for LGFB on Tuesday. Yay! I'm sporting my Gap hat now. Still waiting on the buffs I ordered.
Just want to say Good Morning to everyone and hope your day is great. Also, thank you for being here for me and I hope one day, I can help others like you have me.0 -
mstori - yay for Claritin! Take it at 24 hour intervals for at least a few days - up to a week. Usually the first Neulasta injection is the worst because it is the first time the marrow has expanded to produce WBC, but I forgot to take the Claritin before the third injection - took it about an hour after - and I had pain.
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MsTori - I took it for about 10 days.
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My oncologist doesn't want me to take Neulasta unless my blood work looks whacky. Is that normal with TCH?
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pbrain - It varies, some do and some don't. My onc didn't give me a choice, neulasta was part of their protocol so I had it. They felt that the risk of neutropenia was too great without neulasta.
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Pbrain...
Never got Neulasta and wouldn't have even known about it but for this wonderful forum! I was prepared to ask for it though!0 -
pbrain - they will do a CBC right before each tx and depending on what your WBC looks like they will make a decision about Neulasta. At my center it was automatic, but it all comes down to style points depending on your doc.
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Pbrain some insurances won't cover it till there is a need (white counts go down too low) … so no it's not unusual.
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Neulasta is crazy expensive. I am receiving sargramostim (Neulasta is pegfilgrastim) as part of the Her2+ trial I am in and the cost of that alone (it is the placebo) is five times the airfare to get to Washington, D.C.
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Pbrain, I never had Neulasta and I never had a port , I only have 4 more herceptin infusions,then I am done. It has been almost 1 year since I was diagnosed, I had an easy time with the TCH and radiation. I do have a vaginal discharge SE from the Tamoxifen. I go tomorrow at 3PM for my first mammogram since I was diagnosed. I have to admit I am a little nervous so I would appreciated a prayer or two. I am 74yrs old , to quote my MO "you have breezed thru this" Hope the breeze continues..
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SpecialK- missed your smiling face and company this past treatment.
It went well. Awake all the way home too. The icing was still horrible, but so glad I do that. My mouth is doing better. I looked like a chipmunk this time as I stuffed and kept ice in my mouth during taxotere. Lol! Thanks for advice on Claritan. I guess it does matter what antihistamine you take. That and it was the first shot. Will continue it for a week.
I saw my echo results finally. I will post them as I can't even begin to understand them. Also, will post my labs. Questions. Have to dig them out and will post.0 -
Bren, I think you said a few pages back you're near Philly. I love my BS & PS in Philly - PM me if you want any info. I live in NJ and it takes me about 45 min to an hour to get there.
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Eileenohio - thank you for saying that. Although normally I'm a positive person, I've been in a bad place for the last 24 hours. You and the ladies on this board have pulled me out ... thank you. My new mantra and affirmation is "I am so blessed because I am BREEZING through chemo!" Negativity is a certainly an easy slope to slide down. Thank you for pointing out how many of us have not only survived this but have thrived!
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kayb - my android galaxy phone also has great voice recognition. I was thinking eventually we probably won't need to type - just speak.
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Welcoming any input- pre chemo ECHO results: height:67" wt:146 HR:109 (ugh!) BP: 53/mmHg. Interpretation: study quality technically very difficult due to poor windows. Normal chamber sizes. No pericardial effusion. RV/RA pressures not determined due to inadequate TR jet. Left ventricular function probably normal. No obvious significant valvular abnormalities noted.
Chamber size and function: complete 2 dimensional transthoracic echocardiogram was done (2D, M-mode, spectral and color flow Doppler) study quality poor, so I agreed to to the echo and saline. A contrast injection of Definity was performed to improve assessment of LV function.
LV: chamber size, wall thickness normal. Estimated LVEF >55%. (Why not a specific number?)
LA, RA: normal
Right ventricle: cavity not well visualized. Right ventricle systolic function is fairly well preserved.
Valves: all say okay. Only comment is tricuspid valve- there is trivial tricuspid regurgitation by color flow Doppler imaging.
Then there's a bunch of Doppler measurements and calculations. Let me know if I should include those. Don't want to over due with writing putting everything down.
If I'm getting Nuelastra after each tx, why is my WBC still low at 4.14 ( norm: 4.8-10.8)? Also, my hemoglobin is 10 and hematocrit is 31.5. Platelets are good. Rbc: 3.66 (norm: 4.2-5.4). I also have been packing in the protein and even tho it's normal range, it's at lower end of normal.
Any input would be appreciated.0 -
Oh- one more thing.... LDH is 123 (norm: 60-200). Comment says- slightly lipemic.
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Good morning everyone.
I just finished page 60 of this thread. I should have chosen OCDLee for my screen name. I've made so many screenshots of posts since starting the thread. There's so much information - drug combinations, acronyms, suggestions about handling the different phases of chemo, etc. that I want to make sure I can find them in the future in my soon-to-be-created Triple Positive folder.
Ugh. I hate this feeling I've been waking up with since finding out the tumor is HER2+.
First there was the waking up feeling of "Oh sh-t, something's not right with my left breast."
Then it was the waking up feeling of "Oh sh-t, my mammogram/US came back BiRads4."
Then it was the waking up feeling of "Oh sh-t, it really is cancer."
Now it's the waking up feeling of "Oh sh-t, it's HER2+."
I know these are all emotions and the real "Oh sh-t" stuff (emotions PLUS the physical part) is coming down the pike.
I've been awake for 2 hours plus but haven't eaten anything which is probably why I have the shaky feeling on top of the "oh sh-t" feeling.
Thanks for being here. It's reassuring to have a tab to click on where there are other people going through the same thing - right down to the receptors. Don't get me wrong, I wish none of us had to go through it. Ever. But since we do, at least there are comrades.
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MsTori - With my echos they gave me a range sometimes and a number other times - so I started with an ejection fraction of '73%' and ended the year of herceptin at '55-60%'. My docs were ok with the final reading and said that 55% and over was fine.
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LeeA - Sometimes we write poetry - today your poem would be titled 'Oh S**t in the Morning'!
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Omaz- so why did they just give me >55%? I mean...I want the actual number. Because starting out low is not good. That's the part that freaks me out. I have always been active before chemo. Mostly at work. I rarely sat and ran the hospital halls till my legs and back ached! Also, my diet and weight has been good. Not great, but good.
And why with all my protein and iron, red meat in diet is my lab values low?0 -
Omaz, ha ha...
I haven't written poetry for years and I went to school, in part, on a creative writing scholarship. I ditched that (creative writing) and went into advertising instead.
Here's my contribution
Here I sit all broken-hearted
Pretty silly since treatment hasn't started!
Have a good day, everyone. We're going to a play of all things. It's one my husband has really wanted to see.
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MsTori - I don't know. TonLee is the expert about MUGA and ECHO maybe she can tell you more.
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Hi LeeA,
My course of events in 2009 was equal as you pictured! Cheer up!
This year I’m very glad to pass all check-ups and my MO was saying” You don't have cancer any more” Sometimes I'm in fear of recurrence still, but hoping for the best and trying to live fully.
Take care and best wishes!
Usha
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