TRIPLE POSITIVE GROUP
Comments
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Soltantio: I had problems after my first chemo but no shortness of breath...just MAJOR heart palps. Could just be stress, imagine stress with all of this.
You need to check with your onc. Heart problems are rare. 0 -
We always think the worse and usually is nothing. Bike ride is a great idea. Oh, my, I know about the ER. Went there twice after TX#1 for the heart palps. First time, my electrolytes were out of wack and then back the next day because the palps came back....The only good thing about the ER is you are watched so carefully (they didn't want me there because my WBC was low) or they would have kept me overnight. I admit, I was darn calm while in the ER but our ER was extremely small.
The bike ride should be a good destresser.
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AA,
You are correct. No PET. No Ct. I did have an MRI once, right off the bat when a second opinion Onc (civilian)thought he felt a lump in the other breast. But it focused just on the breast.
Other than that.
Nadda.
My Ro told me at my last check up that I should have had a baseline PET from the get go. But, he was new and didn't want to rock the boat at that time. And now he says, it wouldn't be very reliable since I had so much radiation? He just moved (military) so I think he felt free to tell me this on his way out.
I don't know...but I can tell you this... and he pretty much confirmed it.
Because I chose to skip the axilla dissection, and because I had the audacity to make my own choice, fight for it, the no scan thing is punishment. (That'll teach me!)
I hesitated to even tell you that....but you should know I do NOT see civilian providers. I am military and we have a micro socialized medicine thing going on. Anyone who thinks socialized medicine is wonderful for catastrophic illness should think about this.....I am stage 3 and not "authorized" scans. My Onc told me even if he believed in them, he COULDN'T order one for me because of "policy." That policy being, if you do not do exactly as your told (standard care) you get nothing but the things you agree to take.
In some ways the military is miles ahead in research, but in many other ways, it is still male-centric. And you don't question, argue, or buck the rank! If you do. You pay.
I knew this, being prior military myself.
But now as then, I did it anyway.
And our wonderful insurance (who is in bed with military hospitals) has backed NOT me, but them. So if I want a scan, I have to pay for it. All of it.
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TonLee,
I have no connection of any kind to the military, other than that my sweetie served decades ago (Vietnam) and my father served in WWII.
But I do "get" it, because I don't believe we are doing the best we can with those who serve.
I'm not one to generally favor scanning. There is good reason for avoiding radiation exposure as much as possible for all stages. The danger of repeated exposure is hard to get across to patients who are terrified of "missing" something. So the rule of thumb is to avoid it as much as possible. But with the tendency of HER2 to spread, symptoms that continue should be investigated.
I do think the scanning done over time on me was beyond what should be done, and I think my PCP went a little overboard with CTs. But with prolonged steady symptoms, stage III is a different story.
On the "outside", stage III with symptoms would get imaging.
A.A.
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Soltano, I was very anemic during chemo, and required two transfusions. One of the questions they always asked was are you short of breath? Because low red blood cell count can do that too. Just FYI.
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Soltantio: I had TCH and from time to time experienced sore throats and some tightness in my throat. The latter did subside. At the time I put it down to a mild allergic reaction. if you are worried, get it checked out, dont wait.
Tonlee: "I didn't survive all this crap to stop living." Well said. This should be the thread's mantra!!!!
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Soltantio I know a woman who became anemic just from the surgery last month… before she started chemo. One thing I learned very quickly on chemo is to tell your onc everything. Things I thought were nothing ended up being some of my worst SE over time. It doesn't hurt to contact them. They are used to getting a lot of calls especially after the first tx.0
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AA,
That is pretty much what my RO told me. He said, "Your cancer spread to the lymphs. We know it traveled. And your tumor had set up its own blood supply. You should have been scanned. I'm sorry you weren't."
Oh well.
You know what? After 26 years of military health care, I'm pretty sure it won't be cancer that kills me. It'll be some kind of clerical error or policy change...hahah
Seriously, it is wonderful care for 99% of people. I tend to be the outlier on stuff like this. I need to stop being so ungrateful!
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Wow! A lot happening on this thread!
ToniLee, don't know if the have a Chevy's restaurant in San Antonio.....but they make skinny margaritas....along with many other favors and they have "happy hour" every day in their bar from 2-closing! My DH and I supported National Tequila Day there last Tuesday....just doing our part! LOL0 -
I love Chevy's...they have them in San Diego!
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Yeah, thanks Ladies...I'm going to check for a Chevy's right now!
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hi ladies trying to catch up but there is way too much to read!!!!
for those of u who had a lump when did you have your first mammo/mri etc after tx? i am having mine (it will be the last one) in aug so 1 full yr after diagnosis - is this correct? i am having a bmsx in sept (no date yet) and they want to make sure there is nothing there. It makes me nervous that the left (good) breast has not been screened in a year. I am dreading the MRI, i cried for 2 days after my mri guided biopsy last year. But it is necessary b/c my tumor only showed up on u/s and MRI - i will have to drug myself im sure.
i don't post much cause i so busy w my kids being home for the summer - they are really helping it getting my mind off the upcoming surgery. I am so anxious to get it done already
i read the last couple of pages - my hospitals policy is that if you have a BC diagnosis - you get screened. No PET but i did get a CT of the chest, abdomen and pelvis and bone scan b4 i started tx. I also had a brain CT b/c of headaches that was clear (thank god)
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soltantio I'm glad they got back to you. I had a feeling it probably wasn't an emergency but that's OK. Heartburn/acid reflux can be confused with shortness of breath. I had terrible heartburn that Prolosuc (yes I really call it that) didn't work. By the end of chemo I was on 2 drugs for heartburn/acid reflux. I hope you feel better now too. Remember this is their job. They really do want to know.
Rozem I had a breast MRI of both my breast before surgery. They ended up seeing some suspicious stuff (4 areas) in the "good breast" but 1 my BS was really concerned about. He said I would need biopsies every year. Recommended a BMX and I agreed. We didn't even biopsy anything. Ended up that one spot he was concerned about was LCIS. I'm glad I did the double. They also like to do the MRI to get a better view of whats going on. I was scared of the MRI but it was actually pretty easy. Your head doesn't go in the tube. Be sure to bring some of those sponge ear plugs (no metal). The machine is noisy.
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just got home after completing my 6th and final taxotere/Carboplatin infusion. They think my Shortness of breath is from Anemia. Will have an echo in 2 weeks to see if i can continue the remaining 12 herceptin treatments. My hemoglobin today was 10. I also had to get a gram of Magnesium and will take oral potassium for a week. The carboplatin really sucks the electrolytes out of you!! I just made it today with the platelets - they were at 100,000 that is the limit anything lower no treatment. My WBC were up to 6.69 again-- if it isn't one thing it is another. Now will start radiation on August 20th. I can't wait til 2013 and have most of this behind me. Will start tamoxifen in a few weeks also. Not looking forward to that. I could have a complete hysterectomy in 4 weeks but i think i want my body to heal a bit more before i put it through more surgery. SO i am thinking sometime in 2013. Maybe after the herceptin is done. Although, the dr said herceptin does not interfere with the surgery. just the chemo. I treated myself to a culvers turtle sundae. Why not??? i had gained 2 lbs. The dr was excited about that. I think i have gained about 5 pounds through chemo. i think once i can get back to kick boxing and step aerobics it will come off. Plus then i can eat salads again etc. oh what a journey!!!
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Cindy-can you take iron pills to help red blood count?
I played 9 holes of golf this morning. About hole 7, developed a headache and was really hot. Came home after 9 (two minute drive) and started throwing up. Literally laid on the bed naked with a fan on me for an hour. Couldn't keep anything down. Head pounding. Finally dozed off. Felt a bit better on waking up, so took a zofran. Head still pounded all in the back down to my neck. Took one of my pain pill with tylenol stash at 5 and am FINALLY feeling better. Headache minimal now. Don't know if it is heat related or what. My mind always goes to the worst possible thing.
Laying in bed getting ready to watch the opening ceremonies. I love them. I will watch tv round the clock for the next two weeks. Love all the special stories. Can't beleive there is a Korean blind archer.0 -
Cindy, my count just got to 10 this week at 7 weeks PFC, TCH x 6. I had to get two transfusions during chemo, two units each time. I have to get magnesium every week still. I was on 6 tablets of magnesium but had diarrhea too much so my MO said take the Ivs instead. I am also on potassium, still. Sound familiar? LOL. My ps won't place my TE until my count comes up some. Hang in there.
Fluff, sounds like heat stroke, and dehydration. Got any pedialyte? Call your doc and just make sure you are back to normal. Will you just please be careful? I worry! ( yes, I am SUCH a mother)0 -
Thanks Moom. I am definately taking it easy. Now that I can keep food down, I just ate a bunch of watermelon and it seems to be helping. Sugar and liquid!
I'll bet I can match you on the worrying front. Lol.
When I was laying naked on the bed, I even worried about having to call 911 and not having the power to put clothes on.0 -
Fluff The EMTs would remove the clothes anyway so why bother.
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Fluff,
You are doing that trial right? Make sure you report this to them. It could have something to do with the tx you're getting.
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I will, Tonlee. I see them a week from Monday. Was wondering that myself. Thought I would shoot the nurse an email. Btw, I only drink my margaritas with the good stuff too, but I am like nancydawg. Not a fan of the skinny ones.
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lago thanks for the reply...my BS said that if they see something they feel is suspicious they will biopsy. They said its b/c if there is (and he even said this is highly unlikely) a new cancer in the other breast they will do a SNB at surgery. Once the breast is gone and if they find something after at pathology they would have to do a full axillary dissection b/c they can't determine which nodes are sentinels (drain from the breast) anyway, hopefully it will all be clear and this won't be an issue - ahh the worry never ends
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Hi Fluff
Sorry to hear about your post golf headache/nausea. Sounds like it was the heat. What did you think to our opening ceremony. My kids and I stayed up to watch it. It finished at 12.45am here so we are all shattered today. Just watching the cycling road race as they go up the mall to Buckingham Palace.
Tonlee: hope you arent climbing the walls with no exercise. I went for it in the gym on Tue and havent been able to walk up stairs since!
Hi to everyone, boy this thread moves fast.
Liz
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I wake up at 3 am every morning thinking about cancelling my surgery. I already told the PA at the hospital I will probably be jumping off the guerney as they roll me to the operating room. She had a good sense of humor, and laughed...maybe it was nervous laughter. I am definitely getting punchy as the time nears. Tonlee, I haven't talked to my daughter about those skinny margs, but I will let you know when I do. I am going to be there next week hopefully having a couple of no salt fat margs....lol. At least I can still laugh out loud.
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Rozem the did a SNB on my good breast too. They ended up taking 4 nodes (my BS wasn't happy about that but 4 l it up). As I mentioned it was only LCIS. No nodes involved.
nancedawg hang in there. It's really all surreal. When I woke up from surgery though I still felt like me. Nauseous as all hell from the anesthesia (some people get that but most don't. Runs in my family) sore but mentally felt better knowing the cancer had been removed.
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fluffqueen - i can take iron however, i heard it really doesn't help since you need the bone marrow to stimulate the making of cells. Any thoughts.
moonflwr - yes sounds very familiar. this am my legs felt better already. i think if i get the pain back again. I will demand a mag and potassium to be drawn if they are low - more iv mag and more potassium pills. i did get my potassium up on my own after treatment number 3 just by eatting potassium rich foods but that was a bit difficult. I took it from 3.6 to 4.1 in 3 weeks. alot of strawberries, watermelon, and baked potatoes.
thanks for the help ladies.
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nance - Are you artistic? You could channel some of the nerves into a creative project that expresses what is going on. As lago said, hang in there!0
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What's everyone think about the 17 year old girl who has developed a software app that can detect breast cancer 99.1% of the time? Interesting that it isn't being talked about very much!!
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Hello ladies; it's been a while since I've been on here at BCO; been so tired I've just gone to fb a little each night then to bed. Spent time in the BGC yesterday for tx number 3; past the halfway point now.
Haven't seen my MO since June 15; not happy about that. Made sure I will see her before the next tx in August. Have so many questions to ask; after my mx, when they discovered cancer in 2of 4 nodes, my MO ordered a HER2/neu test on the .5mm tumor. At my follow-up with her, I asked what the results were and she told me it was positive. Yesterday I asked for copies of my Oncotype test and path report for the node test. Found out the node test was cancelled(!) so why in hell did my MO tell me it came back positive? So very angry. Just another thing to add to my frustrations in this whole journey. I just need to get off my butt and see what I need to do to get a second opinion.
Thanks for listening.
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kayb, that is exactly my thought. My sister-in-law is a cyto tech, so next time I go over, I will bring my path reports and have her kind of talk me through it. I am pretty good (we all are, right) but she will be able to dig a little deeper, I think. Then when I see my MO, I will be armed!
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Vicki, once my patholgy report came back as her2 positive, they cancelled my oncotype test. They said her2 trumped anything else.
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