TRIPLE POSITIVE GROUP
Comments
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jenn - huge congrats on the clear brain scan - what a relief!
pbrain - I felt the same way when I was going through chemo, as I had a pretty rough go of it each round. I never threw up, but I had a low grade fever continuously for 3 months with a significant white and red count drop while on chemo and had the absolute worst acid reflux (had to have an endoscopy during chemo to r/o GI bleed). I maxed out all meds for the reflux - nothing gave me full relief. I was sick with it from days ~3 to about 16...not much time to feel a bit better before the next round. And here I was seeing other women who were able to work through chemo, had minimal SE's, etc. Let me say it has nothing to do with prior fitness (I was very fit prior to chemo), healthy eating (I'm semi-vegetarian), or not drinking enough water (I charted it and took in plenty of fluids). I did some reading, and it is felt your response to chemo really depends on your genetic makeup - some just have it rougher than others. All that said...hopefully you will find the right antiemetic combo that works for you to make subsequent rounds more tolerable! And as far as people dying from chemo - the only risks associated with that are very small and include severe allergic reactions or developing severe neutropenic sepsis (not being able to fight off infection due to low white count). If you are getting Neulasta or Neupogen your risk for the latter is much lower; if not, just be very careful during your nadir (days 7 to 10 usually) to stay away from crowds, sick people, etc., and call your doc if your fever gets above what they recommend (usually around 100.5), even if no signs of infection (usually you won't have signs due to low white count). Hope that helps - hang in there!!!
ang - hope you are feeling better - we are here for you!
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leeA thank you so much, if you could ask that would be great. I live in a pretty flat area plus im in pain all the time so i don't think its anything that is happening outside. I will also check out that website.
solt big WOO HOO to you! before this dreaded surgery i was finally getting back to my pre-chemo exercise routine but that was 6 mos later so its great that you are doing so much already
jenn congratulations on your clear brain mri - whew!
my PS is actually a pretty compasionate guy, he just doesn't want me to throw in the towel just yet because ive already put 4 wks into this. And my options are pretty limited if they do come out. App i only have enough belly fat for 2 very small A cups and he said doing diep for that would not make me happy at all. Whippetmom suggested that maybe he put the expanders in incorrectly but this guy is head of plastics for 3 teaching hospitals (even my PCP used him for her double surgery) so i doubt its this. How could they put in expanders incorrectly?????
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Thank you, thank you, thank you everyone for hurling suggestions and comfort to me over the internet ;-) I am feeling 100 times better today. I didn't sweat so much last night! I still feel like I smell like chemicals, but I feel a bit more like myself and even a little bit hungry. I've lost 14 lbs since Friday. Not my ideal diet...
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rozem - I have just started a list for my Friday morning appointment and added your name to my list as a reminder. My PS is such a personable guy that I don't think he'll mind me asking.
You mentioned this: "this guy is head of plastics for 3 teaching hospitals"... do you think it's possible that he had one of his students/interns in the OR with him for your surgery? After reading that I was reminded of the morning of my nose surgery many years ago. The PS introduced a young man I had never met before - he said he was a top PS student/intern/whatever at Harvard. I often wondered how much of my surgery that younger doctor performed. One reason I wondered is because my PS obviously had poor eyesight and he always had a younger doctor tagging along behind him during the pre-op appointments. Just a thought...
Also, re: barometric pressure - it's surprising how it can impact people, regardless of terrain. I have a friend in Canada (an e-friend) and she often gets migraines. She started watching the wunderground classic site (only one I've found that shows whether or not the barometric pressure is actually rising or falling) and she, too, ended up seeing a correlation. Granted, I have seen more of a correlation since living near this mountain range in comparison to living on flat ground/sand that was within five blocks of the ocean but even there, we would get marine layers that would move in off the ocean and just hang on top for days on end. Out here we call it "June Gloom." However, I do understand that your chest wall involves constant discomfort so there's probably no connection whatsoever.
When they measured my chest both PSs said that I have a broad chest wall but am smaller everywhere else. I assume they ordered the tissue expanders based on those measurements and my overall body appearance (someplace I recall reading a discussion on the actual size of your TE).
I'm just hoping you can get enough relief to be able to eventually move on to the permanent implants. Someone on the November surgeries thread described the tissue expanders as being like braces, i.e. never quite feeling right - ever. Again, I know what you're experiencing is far more than just not feeling right! I held the sample tissue expander in my hand as well as the sample implant and the tissue expander definitely felt bulkier to me but then again, it was empty versus filled.
I think it would be great to have the permanent implants put in during the initial cancer removal surgery. My BS won't do it - or won't allow the PS to do it - but in terms of just getting it over with it seems so much easier...
(gentle long distance air hugs for you!)
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PBrain - so glad to hear you're feeling better this morning.
Wow. 14 pounds. That's amazing in a scary sort of way.
Dancetrancer's post about chemo response makes a lot of sense. I think I'm going to save that one for the chemo folder.
I bet your furry companions sense the change and are feeling better as well.
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Glad you are feeling better PBrain! You can go into round 2 armed with the knowledge of how your body reacts now and get ahead of it all before it happens! Your best defense is your wonderful attitude and sense of humor...you're amazing!
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Lee I actually asked my PS before surgery. He said he might let the resident or what ever they call them at that point, put the drain in… but remember these "resident/interns" are doctors. I think you can feel confident that your PS did most of it. Now with Anesthesiologist that's another story. I was told the residents are the ones monitoring you with the anesthesiologist "managing all of them" up to 3 operations at once.
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I ate a lot of peanut butter on chemo. I'm like Tonlee. I could eat spoonfuls all day but my disgestive system typically is not happy if I eat too many nuts or spoonfuls peanutbutter. Stick to teaspoons as it is high in calories and salt.
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Pbrain - I'm glad you are feeling a bit better. Exactly what drugs were you given pre and post the treatment - were you given Emend and/or anything else to bring home? Were you given anything to take the day before the treatment?
I know everyone is different but you should not have thrown up at all if you were given the right meds.
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PBrain suzie is correct. You should not be puking. There are lots of meds out there. I know my SIL who works as a physician for one of the major drug manufacturers told me that if I still puke on chemo with the meds prescribed ask for others. The others are actually even better but more $$$ so they don't prescribe them unless you need them. Granted there is always a few that still have trouble but that is not the norm.
I went through this with heartburn/reflux. By the end of chemo I was on 2 meds for that.
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lago, I was happy enough with the work so it didn't really matter but you bring up an interesting point about the anesthesiologist.
Just last night my husband asked me if the same guy who was with us during pre-op was the one who started things up during the surgery. We could never figure out if he was the actual anesthesiologist or an assistant. I was awake during the entry into the OR and was awake when they transferred me to the skinny little table with the arm extenders - but I couldn't tell which one was behind my head holding the mask and saying he was adding in something to make me drowsy. Boom. Out like a light.
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Thank you everyone Wow what a great place I am so glad I found this site and you guys. JENN You might be on to some of it coming up on anniversary. I also have been in some of an attitude with hubby lately he thinks that because he is married to me that he has been through everything too!! Yes he has But not literally like the chemo , surgery's, and rads, to his body and mind etc. He will hopefully never know what I have been through. But at the same time he thinks ok your moving on your fine WE got through it and I am not supposed to FEEL anything anymore IF I cry at all he rolls his eyes and gets pissed. Sorry but I can't just go on with life like nothing ever happened either. Also I read some post about husbands like holding hands, hugs, read up on breast cancer go with you guys to appointments etc. And mine has not ONE time ever picked up a book , read the paper work on what chemo drugs I would be taking, the side affects of anything. I'ts like other then finances he was not there for me. He was nice at first like the first appointment and maybe cooked once or twice but like with in lets say 1 month in to this he just does not seem to care. it could be 2 weeks and I would be lucky to get a hug out of him. this was not us before all this. He has changed and so have I .
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Pbrain,
Glad you are feeling better. Wait until the Herceptin farting starts!! Oh glory! lol By the end of tx my youngest son, 8 at the time, said "What? It's the HERCEPTIN!" every time he passed gas....
Solt,
I started slathering on Aquaphor a week BEFORE rads started. Once rads started, I put it on as soon as my session was over, then used EMU oil a few hours later, and then more aquaphor at night.
Get a big bottle of DAWN dishwashing liquid. It was the only thing that took the Aqua. off my hands and clothes. I generally kept a bucket with water and Dawn in it, and dropped my night shirt into it every morning...then after a few hours, or days (lol) I'd dump the water and wash the clothes...no stains on ANYTHING!!
I took a lot of rads and can tell you...being in front of the damage (you generally don't see it the first few weeks) must help because I have NO damage. None. My RO was super impressed....said he thought for sure, with the amount I took, I'd have some serious damage.
Nadda.
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TonLee, I never knew that passing a lot of gas was a side effect of Herceptin. You gals are a wealth of information.
Thanks
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Sol Thank you! It does suck it hurts so bad some one just last week said to my husband I herd your wife has cancer and my husband said yes and the person said I'M sorry What stage may I ask is she and guess what he told that person I don't know REALLY your wife of 20 years and you don't know anything about it other then I'm OK.
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Eileen,
Some women have it..some don't. I did. And it was the WORST smelling stuff EVA! One day I was in Wal-Mart, after I was done with tx, and I SMELLED that Herceptin fart smell. lol I knew immediately there was someone near me that was on it....so I looked around and standing on the other side of the rack, a woman with a headscarf and no eyebrows. I'd bet she was the culprit!
It is a very distinct smell.
Even my youngest son grossed out over it! lol
Solt,
No I did not shower right after Rads. Omaz had a really helpful suggestion. She recommended the really soft tanks at Target. I got a couple of those and wore them UNDER my sports bra. (Trust me, you will not want ANYTHING rubbing against your skin toward the end.)
The Aloe/Aquaphor just stuck to the shirt and inside of the bra and I went about my day.
The whole point is to keep the skin constantly moist. Emu oil can be ordered on line and is best used once the skin breaks open, or the damage gets obvious. You want to get 100% Emu oil. I used most of mine AFTER rads, in the two weeks after that it takes the skin to heal.
ALSO I forgot...ALOE 99% or 100% (I bought it at Trader Joes in a Green bottle and put a bottle in the frig when for when my skin felt sunburned tight). I did use a lot of aloe. I slathered it on (the gel kind) and when it absorbed, covered it with Aquaphor (at night). It was Aloe I used right after rads, not aquaphor....sorry about that....and then the tank.
I just looked at my notes...I only used Aquaphor at night over the Aloe.
So my routine was like this:
Morning shower (nothing on skin before rads)
RADS
Aloe before dressing.
Two hours later, more aloe.
Two hours later, more aloe (or Emu oil once the skin broke)
Bedtime, Aloe ..once absorbed, Aquaphor.
Amazing how much you can forget in a year!
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Ang,
That's horrible....I'm sorry.
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Since we are talking about skin care during rads it's really important not to have skin skin contact. So if your breast 'hangs down' and the underside touches the skin on your stomach be sure wrap the tank top all the way over and under the breast. This fold area is often where the skin starts to break down during rads. Also I took a picture of my fields since they drew them all over me in red pen and I made sure to goop up all the areas in the fields, especially under the arm. I used progressive emu oil from amazon. Really liked it. Also aloe gel and aquaphor and miaderm.
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Thanks Omaz! I consider you the Rads guru
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Aquaphor is the only thing that cleared up a bad case of diaper rash my son had years ago. It's greasy but it's great! I think I'm going to go dig it out and put some on my hands right now.
My cuticles grow like crazy and the doctor's paperwork mentions being careful about cutting cuticles.
soltantio - I'm not sure if you're close to a VitaminShoppe but I just checked their website and they carry a couple different brands of emu oil. I've never tried it but this must be some amazing stuff!
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LindaK Yay for no more MO for a year! That's awesome.
Soltantio Great that you were able to do that long of a walk!
PBrain Glad your SE's are getting better
Jenn So happy your brain scan was clear! Such a relief I am sure.
For those I missed that are going thru various not so fun things, I am so glad we have this board available to us.
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Angie, I'm sorry you're going through all this right now. When I read your post I was struck particularly by these words: "He has changed and so have I"
When my husband went through his illness I wondered if we would ever get past all of it. I felt certain we would but a serious illness really can change the fabric of a relationship and I had never experienced anything like it firsthand BUT, it was him in the "firsthand" seat - not me (so I just kind of did what your husband has been doing...).
There were times when I was so desperate for things to just feel normal again (he was in the hospital for 4-5 weeks and then had a brief remission and then it all started back up again).
I'm relaying this from the "other person/not sick person" standpoint and maybe it relates to your husband (maybe not).
My husband has always been the upbeat, strong person. He's the rock. When he became ill the ground felt like it had turned to quicksand. Because he is never moody, never upset about anything, always in a good mood there was a brand new reality to get used to. I had to take charge and be his advocate and had to stay mentally upbeat. I never wanted to let him see how afraid I was because I knew that would make it that much harder for him.
For the first time ever I was seeing a side of him I had never seen before. It took everything he had to just maintain (as he called it) so his personality, which is such a big one, became flat due to all the meds and the constant pain he was in. I'll never forget this one day when they allowed him to go outside and they suggested I bring our family dog to try to cheer him up. I thought for sure that would help as he hadn't seen her for weeks but even that didn't seem to work. He was in a place, mentally, that the rest of us couldn't understand because we weren't dealing with that kind of pain coupled with the fear of (possibly) never being able to walk again.
I'm certainly not making excuses for your husband but perhaps he was so afraid of what was happening to you that he is pushing you along the recovery route at his speed - not yours. Everyone deals with illness differently and perhaps his was to just not deal with it on a detailed level.
Twenty years is a long time together and a serious illness really can change things but I do believe that eventually, things will work out for you and your husband.
Eventually our lives settled back into place and little by little the awfulness of what he had been through started to fade into the background.
((hugs for everything you've been through and are still going through))
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Ang, I've worked in the medical field for years, and I've seen that some people are just scared of illness, especially when it is their loved ones. Seems like you might have married one of these people and they are still good souls. I've ready thousands of pathology reports in my life and when I read my father's records after he had passed away last year, I sobbed and sobbed. My mother kept asking "what does this test mean" and I wouldn't be able to talk. It was so different for me when it was my Dad.
I say keep loving him for who he is, flaws and all, and keep coming to this board. Do you best not to take it personally (or do take it personally because his fear means he loves you!) And just keep coming here to post.
Ok, next round of chemo, anyway to keep from having those awful, aching belly pains? I know how to stop the gerd, and now I think I can get my hands around the nausea, but I had wicked belly pain for days, and still sort of do.
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I met with the Breast Team today at my local hospital, which is also a regional cancer center. The good news is that I liked the MO and finally have a start date for chemo. November 29th.
I found out a few more pieces to the the puzzle today. Apparently the reason I have not able to get some of the answers I have been looking for is because my case is very rare. Before a BS, MO and RO came in to see me, there were about 15 doctors in on a conference including a few visiting Dr's from a couple other cancer centers in other states. They were all stumped and not able to come to a concensus as to whether my cancer is a recurrance or a new cancer. They finally were able to say they think it is Stage II, for what it is worth. Their thinking goes like this: There was no test for HER2 back in 2000 when I was diagnosed the first time so they don't know that piece of info. If it a recurrance then why would HER2 sit dormant for 12 years since it is such an aggressive cancer. So it could be a new cancer. On the other side, since I had a small amount of micro invasion in the SN it could be a recurrance of the original cancer that may have been in the remnants of breast tissue left under the arm after the BMX. They did try to get the slides from the hospital that did my BMX in 2000, but they say they do not have them anymore.
The bottom line about chemo is still the same. I have to do it. However I feel like I need more info about the effectiveness the surgery and rads before I decide what to do about them. Standard protocol it to do everything, but even the Dr's arn't sure it is necessary in my case. They would just do it because that it was the "guidelines" call for if this was an original cancer.
ugh, I see even more doctor visits in my future
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Pbrain - The steroids really bothered my guts so that might be what is bothering yours.
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Thanks Omaz, I've never had such non-specific all-over belly pain before. It was making me worried. But my oncology nurse told me yesterday to avoid the oral steroids all together next time. Think it is possible to ask for less chemo next time too? I think my oncologist is doing what he didn't want to do, which is to "bring an army to war then there are only a few muskrats there"...
Har!
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Pbrain - As I understand it one of the important roles of the steroids is to prevent fluid retention from the taxotere. The dose though seems to vary quite a bit. Will you still get IV steroids in your premeds? Maybe that will be fine.
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PBrain - I have no idea if this is permitted with chemo or not but the only thing that has ever helped me with stomach pain has been Pepto Bismol. I just thought I'd throw that into the mix... Back when I had a lot of job stress I would keep a bottle in my desk drawer and run in and take a big swig of it between meetings.
I'm sure the pain is a completely different kind but I always keep a bottle around - just in case...
Bren58 - wow... this sounds really complicated.
Re: records - when I wanted to retrace my mammogram steps from several years before I was first told the records were no longer available but I pushed a little further and found out there was an off-site records storage. I realize these are slides versus films but just thought I'd bring it up.
I took my slides from the biopsy to my BS's office. Reading what you've shared, it's probably a good idea to retain as much of that stuff as possible considering the research that's constantly being done. I might ask for those back as I don't see why he would need them going into the future.
At least you've got a lot of doctors looking at your situation and trying to figure it all out!
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Bren58 - I'm just rereading your post for the third time, trying to absorb it all.
This: "if it a recurrance then why would HER2 sit dormant for 12 years since it is such an aggressive cancer" brings something to mind.
soltantio has her theory about nausea and insomnia and I have this theory/thought (?) about breast problems and solar activity. I know, I know . . . it sounds crazy but when I was piecing together my own left breast problems over the past 22 years I found an article that was really intriguing - at least to me. I've never brought it up here but it was a study done by Russian scientists about breast disease and solar cycles. For what it's worth, Wolf numbers are sunspots (on the sun).
Correlation of the probability of occurrence of breast neoplasms with solar activity
A portion of the article: It was established that population content alterations were wave-like and had statistically significant periods 3,5; 7 and 12 years, and correlate with Wolf number changes. Incidence of benign breast diseases in the group aged 20-50 years also changed periodically (T = 11 years) depending on the birth-year and correlated conversely with Wolf numbers at the birth-years.
LINK: http://www.ncbi.nlm.nih.gov/pubmed/1420427
At some point in all this I remember reading that the female breast is the most radiogenic of all body parts - meaning, sensitive to radiation.
My husband is waiting for me and I might regret posting this because it sounds so way-out but when I read that sentence of yours about "why would HER2 sit dormant for 12 years" I had to mention it.
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LeeA - interesting! Thanks for sharing! I've gotten tot he point where I'm not sure that anything is far fetched anymore.
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