TRIPLE POSITIVE GROUP
Comments
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Jlynn u'r hysterical--I love the bag u put over u'r port--U've been so vigilant about knowing EVERYTHING and u didn't have seran wrap hahahaha-Im certainly not insulting u I just think u'r funny--maybe the steroids are kicking in. And that fuzzy feeling in u'r head could be a SE I always ha that and still do but I'm older so I never know what's from what anymore.
Thank u guys for asking about me--I'm still on thos road--I was in ER last week had a couple of ultra sounds and the Dr; came in and asked me how they are treating the cancer in my spine??? So I said m spine is deterioting isn't it and he said yes and 2 discs--Now here it comes --and I said I didn't know about the cancer in my spine and he felt so so bad so I had to calm him down he was fit to be ties and said he probably made a mistakhahaha, then he said he wasn't a cancer specialist and I asked him what grade he was in--and we were laughing--then I get phone calls to get an MRI --that I don't like--so I did that Fri. and got a couple of other tests. But I talked to one of my Drs. and she confirmed I had the bad dics and vertabrae but not the cancer so I said oh im so glad thereis a reason why I have so much pain, I thought it was in my mind. She said thst's why I always send u to ER cuz u never tell us what's hurting u--Well I honestly think everyone is hurting like me so why should I bother them about it--so she wants to give me stronger pain pills. I said thats fine but I just paid for the bottle I have I'll use those first. So are u glad u asked??? my crazy way of thinking is in everything and when I tell what going on it sounds like a comedy routine and no one gets me--but my Drs. are starting to. That's why I'm always in ER and now they know me and they are happy I have a port. Oh and No results yet--but honestly I'm not worried. U guys are going thru alot and it's all new and scary for u so since I know really nothing about cancer cuz i never really ask but I know about emotions and I feel bad for how u feel that's why I come here. I sure u have noticed I have never given any real advice--it cuz i don't know plus my spelling is awful.
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Camille, you are just a delight!
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Jlynn0807,
Don't know if you are a Bugs Bunny gal, but I felt like the Tasmanian Devil when I was on steroids
. Not only could I rip through the house and clean what usually took me 3 hours in 90 mins., but if I had permitted myself, I would have cleaned our food cupboards of all carbs, and then I would have tackled the fridge and emptied it of its contents. You are hilarious!! We are the same height, and close to the same weight (you are lighter, so eat away . . . for now!!!). Camillegal, I am with vballmom, you are a DELIGHT, no doubt about it. Hugs, support and kisses sent from my heart to yours!!
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camillegal, you are an inspiration.
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Vballmom, sorry they found something suspicious on your mammo, hopefully the biopsy will show it to be nothing serious.
Jlynn, other than the bad taste in my mouth, I usually didn't feel too bad the day after chemo. Hopefully your SE's will be minor and mild.
camillegal, you really are a crack up. I surely do hope that the MRI shows no cancer in your spine.
The sun is shining here and it is almost 50 degrees! Spring can't get here soon enough! And tonight we "spring forward"!
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Speaking of perjeta....is anybody here thinking that they want to be on it also? I've been reading all I can on the early data, and while it is still in clinical trials for early stage her2+ women, I'm seriously thinking of asking my MO to add it to my herceptin infusions. I'm sure this will be a fight with the insurance co., but it if it truly is as beneficial as the early (and I stress, early) data shows, I want it added to my arsenal of weaponry against this horrible disease.
I am brca negative, but come from a family where my Mom had bc twice (2 primaries...different breasts) and passed away from leukemia, her Mom had bc and my fathers sister has had bc twice, (also 2 primaries) and currently has mets all over. I guess I'm saying that I think that my battle with bc is not fully behind me, and I want the most protection going forward, and perjeta seems to have great upside potential. I would feel terrible if in several years, the research confirms that this drug could help early stage women, and I had the opportunity to get it and didn't pursue it.
I have an appt with my MO in 2 weeks. I will raise it with him. I am also seeing a MO at Sloan Kettering, who I think has more cutting edge data. I plan on calling her office Monday and asking her opinion.
Thoughts anyone??
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Rivercottage: My sx is scheduled for 3/18; lumpectomy and provided my nodes and margins are clear I will begin mammosite radiation for one week and then chemo about a month after sx. The MO is planning TCH as my regimen and has ordered a port be placed at the time my lumpectomy will be done. I don't have big, fat, juicy bulging veins so I think this will definitely be a godsend in the long run.
Did you ask them why the change in plans for your port? I wouldn't know what the cons are; for me it seemed like a no-brainer with having to get "plugged in" at least once every three weeks for the coming year.
Best of luck to you!
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camillegal I don't think I tell you how much you crack me up. I love your posts. Sucks about all your pain. Glad to hear the disk issue isn't cancer. Keep us posted on the MRI.
cgesq doctors don't like to over treat but by all means you should ask about perjeta. Remember this drug has SE too. Also, it being a newer drug they may not know all the long term/future SE. This is why they don't like to over treat. Your mom/aunts probably didn't get the same treatments as you because they weren't available. Also did they even have the same breast cancer biology? So if your doctor and the sloan docs end up in agreement regarding your treatment I'm sure you'll rest easier but at the same time even if they don't doesn't mean one of them is wrong. They just don't know sometimes.
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Camille...
Yes, still glad I asked. You're a trooper!! Have a zesty attitude, which I think is just great. So glad your spine is cancer-free. I have a bad back myself, 10 years post spinal fusion, and PLEASE do not let them con you into that surgery, no matter what!! It is like signing your spine over to the devil! I would take it back in a heartbeat. Keep posting my dear...your attitude is refreshing!
CG, Perjeta is my drug of the month. Just started it yesterday, hence all my carrying on about no se's. Go figure I'd be complaining. Feel dopey, but that could be the steroids, I don't know. Anyway, so far, so good. Let's see what tomorrow brings. So far today, just some sour stomach, and am noticing a nasty taste in my mouth for the last couple of hours. But, and I'm not sure, I THOUGHT Perjeta was indicated for women who have not used anything other (getting out the book they gave me on Perjeta before I give the wrong information out)......Ok. Here it is...straight off the cover, verbatim: Perjeta is approved for use in combination with Herceptin and Docetaxel in people with HER-2 positive breast cancer that has spread to different parts of the body (metastatic) and who have not received anti HER-2 therapy or chemotherapy for metastatic breast cancer".
So, for me, it fit the bill, as I was just diagnosed. I have never received any chemo up until yesterday. My onc did say he had a woman who was currently receiving another chemo that asked him for Perjeta, and he called the manufacturer. They indicated that due to the fact that Cleopatra (the study on Perjeta) was only for women who have NEVER received any other chemo, they did not recommend it for HER. That said, I don't fully know your situation. Unfortunately, Perjeta is for Stage IV bc...not just triple positive bc patients. So, I hope you don't make that part of the cut, being Stage IV, and in looking back at your information, it doesn't look you are, and I am hopeful this is the case!! Unless you haven't updated your information, you are Stage I?? I am not trying to deter you at all, just trying to give you the information I have available to me. I did call the Perjeta hotline last night, and this information was made available over the phone also, along with a host of other useless legal jargon. Oh, and do you want to be added to our Perjeta support group? Yea, sure...where can I find it online. Well, we don't have it yet. Ok, thanks then.
So, you can always ask...but this is what I know about Perjeta. Took the infusion well, and I am currently hoping that this isn't the calm before the storm. My next infusion is three Fridays from yesterday!
Going to find some food. My 14 yo and DH are looking hungry!
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Gratitude,
I have done four loads of laundry, vacummed (the house AND my German Shepherd), used the Swiffer Wet-Jet on my ceramic tile throughout the house, sewed a pile of clothes I had sitting in the corner of my living room, swept the front sidewalk, windexed the windows in my car, eaten just about anything I could get my hands on that wasn't total junk (yogurt, granolas, etc.), flossed my teeth, several times just because, cleaned the toilets.....
I think you get the idea?
Lynn :0)
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Bren,
I have to say, that has happened to me too as of later this afternoon. Other than that, just flushed from steriods....little indigestion, sour stomach. If this is as bad as I'm going to feel....then bring it on! We'll see what tomorrow brings!
Guess I'm a Perjeta newbie? Can't find anyone at all on it!!
Best of everything to you as you continue on this journey!!
Lynn
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Camille.....
I am still glad I asked because if one of us didn't you'd never say. No wonder your doctors love you. You can teach all of us a great deal . Thank you.
My favorite Camillism is when they told her her EF was 70 and she thought it was just barely passing because 100 was the best!0 -
cgesq - I think Perjeta is currently only approved for use in metastatic cancer. I donlt think your MO can add it in unless you are enrolled in a trial specifically for it.
jlynn - the chemo SEs are usually days 3-5 (right after the steroid crash, lol!), but hooing they are mild for you. I enjoyed the steroid high - I got a lot done too, which was good because after they were done for each tx I got absolutely nothing done for several days!
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Camille.....
I think you taught that ER MD something too. He's very, very fortunate it was you he made that blunder on.0 -
Jlynn0807 Perjeta is only for stage IV approved this June so it's pretty new. You might find some people in the stage IV threads
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Yesterday was my first venture into the world of forums/group chat...sure didn't know what to expect...am amazed as I read each of your stories. All of you sound like well informed proactive strong and determined women! So SAD to know that there are sooo many of us fighting so hard to get our "normal" lives back. I appreciate you sharing all your advice/experiences! It took me a bit to understand all the abbreviations...LOL...but am getting better at it!
THANKS again for your port/no port info. I'm expecting six TCH treatments (starting Feb 20)...then continuing with Herceptin every three weeks for a year. Just met a lady today who has had her port for three years and doesn't want to give it up...just sounds strange. I've never had many IV's but aren't terrified of them...YET anyway...however don't want vein problems in years to come either. Am scared of port infections and punctured lung during placement like my daughter's friend endured. It's a conundrum for sure!
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rivercottage - welcome and here is a link to abbreviations for newbies:
http://community.breastcancer.org/forum/62/topic/735716?page=80#post_2582606
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Lynn, I was curious about Perjeta and just searched the archives. There is a thread about it, in combination with Herceptin and Taxotere (if you're interested). Here's a link:
http://community.breastcancer.org/topic_post?forum_id=8&id=790575&page=1
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SpecialK, I only had a true physical steroid high the first time. This time, it was barely anything and the side effects hit sooner. I've tried to make up for the lack of steroid high during weeks 2-3.
Four down, two more to go.
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rivercottagegal I had my port for 2 years and I almost didn't want to give it up so I could continue to get blood draws from it. I had nodes removed from both arms, one arm does have LE (lymphedema). Also I am quite small, short-wasted and thin on top. No fat above bet belly button. So small that I had to get a juvenile port. My port surgeon (seriously he is a vascular surgeon that places all the ports at my treatment center) warned me of the issues like punctured lung. Didn't happen… but it did happen to TonLee. She can fill you in on what that was like. She be on here in the next few days.
There are risk factors with every procedure. I remember my mom telling me her doctor gave her some forms to sign before surgery. Pages of "what ifs". She told him she wasn't going to read all of it. Her doctor summarized it for her. He said "Basically this form gives me permission to kill you."
They have a good relationship so he know she would laugh.My point is that yes this happens to some people but typically it doesn't. My mom is alive and doing well.
At the beginning this is so scary because of all the unknowns. Remember when you read the boards you will read more complaints and issues. If people are doing well they typically don't post unless asked.
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Lee,
Ty, I musta been in a haze when I looked, because I didn't find it. Have been determined to find anyone on it, and even in my own "group" so to speak, I couldn't (Stage IV). Yes, it's only for us, and I pray that those of you who aren't there, don't find your way here....it's a whole new world (not suggesting ANY bc is fun, but there's this look on the onc's face when he says "I can't believe I have to tell you this, because most women do not start here first time out of the chute, but you are Stage IV...no chemo for you"...which in my mind meant "sending you home to die....we're saving the chemo for the most hopeful cases"), but I'm determined to kick it in the arse. I'm not much of a quitter, though I have to say, the first week....I cried constantly. Done with that, and realizing that since then, I have many more moments of time....that I can forget I'm stage IV. It's so important. The first week or so, it was on my mind constantly. Now, it's not. Trying to keep a "chin up" attitude! And, I no longer feel like I did when I first heard those words. It does get better in time! The change in treatment plan helped....from Tamoxifen to Perjeta. I've read very good things about it.. and the brochure I have from the manufacturer says that 80% of women have seen their tumors shrink. 80% is a high number in this world!
Watching my favorite tv show, The Big Bang Theory. Always good for a laugh!
Lynn
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Jlynn0807 you do know now that your onc wasn't sending you home to die, right? S/he was basically saying no chemo right now because if Tamoxifen (now Perjeta) can handle the job. If they stop being effective then they move on to other stuff like chemo.
80% is huge.
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Jlynn0807 - there is a person with stage IV on the Taxotere side effects thread that has had Taxotere in the past and will be starting on the perjeta/Herceptin/Taxotere regimen on Monday, you may want to connect with her - her username is hope4acure
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SpecialK...THANKS for the link to abbreviations...OMG sure are a LOT of them!!!
Iago...Appreciate your words of encouragement!
Jlynn...stay strong...am saying prayers for you right this very minute! LOVE Big Bang too!0 -
SpecialK...THANKS for the link to abbreviations...OMG sure are a LOT of them!!!
Iago...Appreciate your words of encouragement!
Jlynn...stay strong...am saying prayers for you right this very minute! LOVE Big Bang too!0 -
Lynn, LilyLady is also stage IV and on perjeta. She was in my chemo march 2011 thread group. So glad things are going well.
Ashla, is there any posting of summaries from the conference? I might want the one from March 7 on when to do scans for early stagers. If it follows my thoughts, I will give it to my onc.
Whoever asked about the Oz movie, we saw it last night. Pretty cute. The IMAX was sold out and I think it would have been fabulous to see it in 3d. It is visually beautiful.
Glad everyone is doing well!0 -
Jlynn0807,
Holy cow, girl, that is a WHOLE lot of work you performed in one day
. I am off to Sleepy Bye Land, mostly because reading all that you did today tired me out completely. Hope that you are able to sleep tonight and that all ladies undergoing treatment are able to deal with SEs. Lago, Special K, ashla, big thanks to you three for always offering great advice/sharing your knowledge. Good night to all!!0 -
Jlynn u'r exhausting all of us, slow down. LOL If that IS a steroid high isn't it wonderful---I loved mine.
Ladies I didn't get the all clear for my results for the MRI--I'm figuring it is all clear because that's what I want. but no one said it was. When i got another test I was told about my bad discs and spine--then a new test said cancer, and that's why the MRS---see I never explain anything right--ever, that's why I should just shut up and my Drs. shake their heads when I'm with them and to have a Dr. say to u, now don't feel bad when I say this but u r crazy, u do know that---Of course I do. Geeze I'm not stupid, just crazy. I haven't slept yet since yesterday so i think I'm overtired--we used to call it slaphappy.
I like the way most of the clocks change automatically now--it's like magic--so it's almost spring. I hope everone has a wonderful Sunday.
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I was just woundering if anyone has developed chronic fatigue due to there tx when they were finished ....
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{{{{Camille}}}} I hope they find the right combination for you to keep this beast at bay.
Lynn, you might want to check out the Her2suppport forums as well. There are several women on Perjeta and most the side effects seem to be GI issues. Link There is a lot more discussion of treatments beyond Herceptin there. A lot of us here have the plain ol' vanilla variety of Her2 and get AC-TH or TCH but you are certainly not alone.
Did anyone else experience a cough on Herceptin? I think I have a nasty cold, and can't stop coughing. I am one that rarely gets coughs. I am hoping it is just a cold, but I read the Herceptin instructions to report any cough to your doctor. I miss the days when a cold was just a cold.
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Sherry, I don't know if I can call it chronic fatigue, but I am quite tired all the time. I am ready for bed by 8 pm.
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