TRIPLE POSITIVE GROUP
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My doctor just told me that they had a glitch in the software and I need 1 more herceptin for a total of 18 treatments. I remember discussing the number of treatments here and just wanted to share that info. Now I have 3 left instead of 2 and have to reschedule my 'deportment'.
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Lago - good luck with the new girls! Are you planning on working or doing anything? I am on July 7th and am suddenly facing being down again, too. It is a shock to the system, the thought of being down after just getting completely back to the "new normal". Ughh!
Omaz - what was the glitch? I am counting on 17, too...CAN NOT WAIT ANOTHER MINUTE for my port to be removed. Still thinking that I should get it removed on July 7th (with new boobs) even though I will have 8 (or 9) left at that time.
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Annie - I don't know what the glitch was but they wanted 18 and had only calculated 17. Maybe you could ask??0
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I'm scheduled for 17 as well. I do see my onc on the July 6th. We'll see what she says.
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lago - I forget, what did you find out about the muga/echo? I have another one to do coming up, that will be number 4.0
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omaz - "deported" - hysterical, especially in Arizona!
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Omaz I forgot to ask.
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SpecialK - I know! I had fun with the 'installation' of the port too. I so felt like I was going in for car work - put me on the lift, install the new hardware..... Looking forward to getting the port out but for sure glad I have it.0
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When I first read that I had a new thought that maybe I can get mine out when I have my exchange, but I don't think I can avoid a separate incision. They put mine in during BMX so I have no incision from "installation". By the time I finally get around to exchange my Herceptin will probably be over! I don't mind my port at all. Other than swelling (was swollen everywhere!) I can't feel it, it has never hurt, so tiny you can't even see it and it is in a 100% visible place all the time on my collarbone,, I have to show the onc nurses where it is, makes life so much easier. Does/has everyone had theirs out by the BS? Has anyone done it with their PS? Had their port out I mean! Ha! Sounds funny.
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specialK - My BS doesn't do ports anymore so I went to a general surgeon.0
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SpecialK--I'm not sure what kind of 'S' put my port in. I believe he's a specialist in diagnostic radiology. As far as I know, he'll be the de-porter too.
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I actually don't know who put mine in either because I had SS/NS the BS and PS were in there at the same time. I suspect it was the BS but I prefer the PS to remove it because it is so visible I think his aesthetic might be better! I actually have a previous skin cancer removal scar that is about an inch away and they might be able to go in through that one so I don't have two scars right next to each other.
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Good Luck with your surgery Lago!!! I think the surgery will be much easier than your chemotherapy. I had mine done at the same time of the double mastectomy and I was discharged the day after and was up and about the next day too. You will do great!!!
My BS will be taking my port out when I am done, he actually used the mastectomy incision to go in and put the port so it sits on the inner side of my new boob, and no visibility and no new scar. Yeah!!! My girlfriend just had surgery on her leg ( broker her femur!!) and had pins and bolts and things put into her leg!! We are going to have a scar contest (with cocktails of course) once I am done with treatment and she is not using her walker. I think it will be pretty close to the amount of scars we both have. LOL
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specialk Ha Ha I plan on doing it with my BS! wont be till Oct though.
Lago Good Luck with your next phase, try to think of it as a mini summer vacation, maybe find a good summer read. Now is the time to get that bathing suit and show off the new girls.
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I just started "The Emperor of All Maladies" I must be nuts
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Iago--Emperor was the first cancer book I read. I picked it up for the ereader and had no clue how long it was. It seemed to go on forever. But it was a worthwhile read. I found it interesting to learn how the understanding of cancers and cancer treatments has been built one little discovery at a time.
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specialK - my BS put my port in and took it out.
lago - I read The Emperor of All Maladies several months ago and it was definitely long but good. I found it super interesting and educational, but easy to understand.
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Hi All,
I too am triple positive and have found this discussion thread interesting. Special K - I see we have the same day of diagnosis. Ugh - things have definitely gotten better since then.
I wanted to comment on two things. First - I am having 18 herceptin treatments and I think that is the number used in the clinical trials on Herceptin. Just another point of reference for you. And second - as far as taking the port out even though you have 8 or 9 Herceptins left - I think it could be fine if your veins are not too bad. THe reason I say that is that I have never had a port and just get an iv put in each time. I am on Herceptin #11 this week and so far so good.
Good luck to all. Thanks for sharing on this discussion board.
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momtothreegirlz - Hello! I ran accross someone else today on another thread with the same date as well! Weird, huh? It seemed like such bad timing to be diagnosed three days before Pinktober - it felt like an onslaught of pink, I was pretty freaked out! I had complete node dissection on cancer side and SNB on prophy side with BMX, so not crazy about an IV in prophy arm, and don't want to do ankles/feet - so I'm glad to have my port. I have not had problems with it and it is so small you can't even see it, so I am ok with leaving it where it is.
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Hello All,
I have been m.i.a. for awhile. Chemo done, sailed thru radiation, herceptin has been uneventful, but...I have had significant pain since chemo in my hips, wrists,hands, feet and left rib cage. When my left rib cage swelled, my onc decided it was time for a scan. I had a PET yesterday and am waiting anxiously for the results. Logically, I know that the chances for it to be C are minimal since I am on Herceptin. I am not on any hormonals yet (having an ooph in July). Sigh. Has anyone had any lingering pain after chemo?
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sunflower - Congrats on finishing rads - whoo hooo!! do you think the pain could be related to loss of estrogen?0
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Onc brought that up, I went into chemopause right away at the age of 39! She also said it could be the herceptin. I strongly feel that the pain in my feet,wrists, hands, and hips is from the herceptin coupled with loss of estrogen. I have no idea what the rib thing is. I refuse to let my mind wander into the METS tunnel, but I will admit, sometimes it goes there. Maybe it has something to do with rads?
P.S. Omaz, I followed your skin routine for rads and my skin barely turned pink. The rad onc was amazed!
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I am just on Herceptin now, tamoxifin to be started soon. I had #4 Herceptin last Wednesday and woke up to a pain between my index and middle fingers on Friday morning. I'm talking killer pain, couldn't turn anything, couldn't push anything, couldn't make a fist, etc. thought if it wasn't better by Monday I'd call my Onc. By Monday it was better so no call, but I woke up yesterday morning with a pain in my nose, like someone hit me, even makes my nose stuffy, kind of gives me a headache, I think it might even look a little swollen this morning. Now I know if I call my Onc office they're are going to tell me it has nothing to do with Herceptin, but I really think that is what it is. I noticed too that the front of my shoulder hurts when my purse rubs it, my ankles hurt, but only when I touch them. For the first few days after Herceptin, I always notice that below my ribs hurt on my left side, just for a couple of days. These are not debilitating pains, just get very annoying when there's always a pain somewhere. I don't think mine is chemo, but I really do think it's Herceptin.
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sunflower71 I do hear that lots of women have bone pain from Herceptin. The rib thing… was it in the path of where you got radiated? I do have some lingering issue from chemo that are slowly going away. Some slight bone stuff in fingers and toes is from the Anastrozole since it just started 3 months after I started taking it. The bottoms of my feet still hurt when walking a lot. Nail and fluid issues resolving slowly.
Certainly hope for benign results. Good to check though.
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sunflower - Thanks so much for the feedback - I am really happy that it worked for you!!
achpurple - I have my every 3 week herceptin infusion over 2 hours. It really helps me. Maybe it would help you.
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My infusion usually takes at least 3 hours because I usually have heart issues with infusion. Slow is the way to go for me. One of the nurses tried to tell me I had to get it over 1 1/2 hours, but when I talked to my onco he said it didn't matter and it was more inportant that I get it no matter how long it takes for infusion. He said "why mess with success."
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Sunflower- sending positive vibes your way !!!!!
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Finally had my first big Herceptin dose yesterday so now I can move to every 3 weeks. Meanwhile, I started Rads today (so much for more freedom, right?). Omaz- what was your secret to preventing skin breakdown during Rads? My RO is telling me to just put the Aloe on am/pm and that's it
MO has ordered another MUGA scan. I had the first one before I started Herceptin and it's been about 4 months now. Is everyone else getting a heart scan this frequently?
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dragonfly1--I'm on 3-month schedule for heart scans (called a SYMA scans here.) Don't ask me why they call it SYMA. The tech told me it measures the same thing as a MUGA. Different brand of machine?
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hi dragonfly - I get an echo every 3 months to check the heart.
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