TRIPLE POSITIVE GROUP
Comments
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ablydec - yes, my hair started growing back about 6 weeks PFC, the worst side effects went away. Herceptin only SE's that I had were headache, fatigue, & achiness and they only lasted a few days after treatment. If you have many it can help to slow down the infusion on the herceptin only infusions. I started going without a hat/scarf about 4 months PFC, my hair was pretty short, but ......
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Ok ladies, so the HER2 thing is scaring me am I reading old information? Because what I read is that Herceptin only works in about 50%?!
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Herceptin only....they had to slow my infusion down as I felt really crummy on the thirty minute kind. Felt like I had flu for three days. It was better after moving to 90 minutes.
Hair....I shed a lot on Taxol, but didn't need a wig until the end. Then after three weeks after chemo, I lost most of the rest along with eyelashes and eyebrows. New ones were growing in though so that went fast. Hair really grew quickly after I finished with herceptin.
Had my 2 year appointment with my BS today. She commented on the wonderful outcome of my foobs....symmetry, and naturalness. It was the first time she had seen them done. And, I am cut loose from her. No going back unless I have symptoms of some sort.0 -
jkeller3 you also have to understand that not all HER2+ even need Herceptin. Problem is they just don't know who. My onc told me that according to the stats for my age/diagnosis that 40 out of 100 women don't even need chemo or endocrine therapy (and I assumed Herceptin) and are still NED/no recurrance/alive after 10 years with just surgery alone. The problem, again is they just don't know who those 40 women are. But if I did do treatment 86 women out of 100 are alive & NED after 10 years with no recurrence.
You can't just look at an individual statistic. It's a complete treatment plan. It takes a while to wrap your head around all this stuff. 50% is actually a big deal.
More Yay for Fluff!
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Thank you....this is still new to me. A lot to process at one time. All the "what ifs" especially when I look into my little boys' eyes. I try very hard not to go there...the emotional battle regarding my boys I think will be my toughest.
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thank you so much ladies!!!! relieved for sure
welcome to all the newbies!
jkeller my onc said exactly what Kayb said - our prognosis is equal to er/pre+ her2- now with herceptin. Yes that wasn't always the case but it is now - i understand the emotional battle all too well - it takes a long time to feel better but you will - trust us, we've been there!
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ablydec lindas experience was the same as mine...hair started growing back right after taxotere (last chemo) - H on its own is a breeze - just really tired, drippy nose, but NOTHING like chemo. I actually felt "safer" when i was doing my every 3 wk H - I hate that I don't have that security blanket anymore
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Rozem, I'm with you. I have a hard time being cut loose from all my docs, and only taking tamoxifen. I want them to develop that Star Trek scanner that can check me out quickly once a month.
Jkeller, in all likelihood, it will be hard to get your head around the emotional thing for awhile. I finished herceptin last March and chemo the July before that. It is still on my mind every day. This trip I just took with my son had me thinking more than once that if something happens, he will have that time just the two of us, and he is 28. Geez, I don't even like being cut loose from my PS, and I don't have any reason for that. Somehow, I am convinced if someone checks me out every couple months, I will have that security blanket. My onc teaches yoga, especially the breathing and relaxation. I go religiously as it is kind of like an extra short appointment if needed. So, do not feel bad. Rozem is right, it does get easier. Thank heavens they wean us off gradually. I'm the baby bird the mother has to kick out of the nest to get them to leave!0 -
Fluffqueen, you would have been more than welcome to come and take a shower and/or even stay here - had I known you were here!
Your recount of brushing your teeth in the kitchen sink reminded me of the route 66 trip my husband took several years ago. We stayed at this famous route 66 motel that's since closed and the bathroom was so disgusting (cockroaches) that I tried to take a "bath" in the little bathroom sink because I was so afraid of what would come crawling out of the drain.
We also stood on the corner in Winslow, AZ.
We took off from Louisville and it took us five or six days to get to LA but we took our time. Actually, it may have even taken us longer than that because we really stuck to the back roads and even went through Oatman, AZ and let the burros stick their heads into the car (we were driving a convertible so it didn't take them much of an effort to get their heads in).
It sounds like you had a great trip. I've always wanted to do the same trip with my son who is also in his twenties.
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Jkeller everyone is different in this journey. While Fluffqueen still worries and wants a Star Trek scanner I'm in the camp of I'm done and cured. Granted I'm 6 months aheadn of her but I really am happy NOT to see doctors so often. I'm on the 6 month check up schedule. I can't wait till it goes to 1 year, then every 2 year. My cancer was a big time suck. Not interested in it sucking up anymore of my time and energy.
I do think the 2 year mark is a big one. This past Friday was 2 years since my last chemo. I feel so normal now. I also felt that after surgery my cancer was gone which was a big relief for me. Chemo and this ESD (estrogen sucking drug, Anastrozole) is just insurance… and when I think about how much money I've spent in insurance over the years and never needed it…
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Hi Rhonda2,
I bought EMLA in bandage form at the drugstore, and I put it on 2 hours before my port was used. It numbed the area beautifully, did not feel any pain. Hope things go well for you. Prayers sent your way!!!
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Dear ablydec,
I had six rounds of chemo, 3 with FEC, 3 with Taxotere (Docetaxel), and Herceptin was given simultaneously during the last three rounds. The first three rounds were very doable, the last three, difficult. Taxotere, for me, caused neuropathy in the feet. I began the last of the three rounds on Sept., 28, 2012, and finished on Nov., 9, 2012. Going to the basement now to do my fourth workout in 8 days----yahoo!!!----which is to encourage you that, yes, the neuropathy is much, much better. Hair thinned out greatly, but it is growing back very quickly for me. Now that I am receiving Herceptin without chemo, I find the SE to be very minimal. I began radiation on Dec., 24 and finish tomorrow---YAHOO!!!----and radiation was a total piece of cake, for me, compared with chemo. For all of us gals, the initial diagnosis is so terrifying, shocking, mind-numbing. But then we all pull up our socks, pray, turn to friends and family for love, support, humour and encouragement, and before you know it the treatment phase is over and you can begin to reclaim your life. I believe exercise, if you can do it, and eating well, along with maintaining a positive attitude and reading reputable posts on online sites about breast cancer---all those things will enable you to come back stronger than ever!!!! Best of luck. All in this group support you,are praying for you and assure you that you can do this.
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re: PET vs. CT scans...
Oh, oh, I know this one! I know this one! Pick me, cypher! Pick me!
I had a fused PET/CT scan, which means they did both scans during the same testing session without letting me move in between, and then stuck them together so that they see the results of both simultaneously. My BS explained them like this:
The CT is like a 3D xray. It shows the bones and organs really clearly, but it doesn't show what they're doing. So, a CT can show structural differences and changes, but not activity. When I broke my face a few years ago (true story!), they did a CT scan of my head, and now I have these amazing 3D pictures of my whole skull. But all they show is my skull, not anything that's happening inside of it. Assuming anything is ever going on in there!
The PET scan, on the other hand, shows what your cells are doing, but isn't particularly good at showing the basic anatomy. With the PET scan, they can see how quickly cells are absorbing particular molecules (how cool is that?!); if they're absorbing them too quickly, that means they're acting cancer-y. So, when they did a PET scan of my noggin, if I'd had areas of cells in my brain that were absorbing the test molecules unusually quickly, they'd have been able to see it right through my skull. Which is amazing. The down side of the PET scan is that, if there are areas lighting up, it isn't always easy to tell where exactly they are. The PET scan doesn't really do outlines of organs very clearly, so activity in the abdominal area might be difficult to pinpoint. If they can fuse a CT and PET scan together, though, they get all of the information in as readable a form as possible.
All of which is cool... although maybe my doc just wanted to sell me on how awesome it was. Clearly he did a good job! It's also insanely expensive. The hospital billed my insurance company $7000 for my scans. Zoiks!
Gosh, I hope you still wanted to know this. I'll feel silly otherwise! (Nothing unusual there!
) I was just so excited to finally have potentially useful information for this amazing group, instead of just questions. Whoopee! I, too, can be a useful member of society!0 -
And Lee, here's that cartoon again, for you and for DiZZyMom and all the other amazing ladies out there who just keep going.
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Bryona, thanks for the easy-to-understand explanation of PET scans/CT scans - and thanks for posting the image on this thread.
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To be honest that cartoon should be man with cold because I can understand why man with flu is in bed. Chemo was much easier for me than any flu I ever had. I was sick in bed everytime I had the flu. I would even tell my onc when I saw her that chemo SE were not near as bad as the flu… but the treatment is much longer so your patience gets worn down.
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Omg Bryona that is the best cartoon ever! So true
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Bryona, that is super helpful. I'm not sure if that's an option for me, or how much I'd have to nag them for it. My doctor ordered a bone scan and a CT scan. I guess if I'm having any symptoms that could be scary (though they could also be garden variety stuff) it would be in my bones or my abdomen. Do you have any thoughts on the bone scan? I was too ... worked up or something ... when I saw MO to ask him intelligent questions. I know this SE is really rare, but whole-breast radiation threw me into a SERIOUS funk. It lifted the morning after I was onto the boosts. I kind of feel like I'd rather get something as comprehensive as possible, then we'll know as certainly as we can, and I can safely ignore any symptoms I'm currently experirencing (i.e., as attributable to arthritis or leftover SEs from chemo or whatever). On the other hand, I guess we are getting everything but my brain.
Cartoon is hilarious. My chemo experience was similar to Lago's in that respect though.
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Byrona: LMAO! on the cartoon! and so true! ....thanks for the explanation for the CT/PET scans too. Very informative!
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cypher, a bone scan is like a PET scan except that it's specialized for just checking the metabolism of cells in your bones -- and it's less expensive. If you're feeling bone pain, then the bone scan makes sense. I think they're used for showing other kinds of bone problems, too, so with any luck, it'll be able to help them figure out the totally-treatable, totally-not-cancer cause of your pain. ((hugs))
lago, you're right: It should definitely be a cold. Incidentally, my husband has had a cold for the past few days, and he's been pathetic. To be fair, if I'd needed something from him, he'd have done it, and I love him for that. But since I didn't need anything, he ... well, he looked a LOT like that cartoon.
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Bryona, thanks for that great description of the CT and PET scans. It was so helpful. I had the combo PET/CT scan, but no one ever bothered to tell me why they were doing both. Now I know.
And the cartoon is great!
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Bryona, super helpful, thanks. MO did say that the bone scan was the best route to differentiate between the totally treatable, totally not cancer issues and ... other stuff which frankly isn't really relevant in my case, because it's only going to show TT,TNC stuff. So there!
On another note, I am ddddddDONE!!!!! And extremely happy about it. Being done with chemo was great, but I still had rads lurking. Now I only have a few insignificant tests, tamox, and herceptin. Aka, can at LAST stop putting stuff on hold and get on with my life!!
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Thanks to everyone for the great advice! Well bone scan and CT results came back negative! And the genetic testing came back negative - finally good news, I needed it.
First chemo treatment did not go as well - had a panic attack right after the steroid went in and before the nurse started to push in the first chemo drug - it was red forget which of the "AC" it was....they gave me benadryl in case it was a reaction, but it made me sleepy and calm and all went well from then on, guess I will take the Ativan from now on....oh and I got a prescription for the numbing cream.
As for SE, I feel ok in the morning, but from about 1:00pm on I feel nauseated but not throwing up and very tired....tomorrow I don't have any required anti-neausea meds or steriods to take so I am a little nervous about how the day will be. Also have had a major headache since Monday.
Overall better than I thought and there is no turning back now!!! My three year old is happy to have me home all day (with the sitter still) and had nap time with me the last two afternoons and said "I wish you never had your surgery, and this medicine, but you're still the best mom ever - even when you don't have your hair anymore you will still be my MOM" That was the best medicine of all for the day.
Thanks again to everyone for their help....
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cypher - CONGRATULATIONS on hitting another milestone!
3littleangels - Congratulations on those scan results! And thanks for sharing the words of your very mature little boy!
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kayb - did you prefer compazine over the Zofran? I have two forms of Zofran - dissolvable and swallowable. Overall, I preferred the swallowable because I got so tired of the taste of the dissolvable.
I asked my oncologist about compazine today but he seems to be more open to prescribing Zofran.
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LeeA - I preferred Compazine over Zofran because Zofran had no anti-emetic effect for me, and it gave me a headache.
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SpecialK, I've read about the Zofran headache. So far, I've not had a problem with that, i.e. during round 1, but I would like to have a backup just in case. When I had rhinoplasty several years ago I was given Phenergan and I guess it worked because I never had any nausea post-surgery.
KayB, I kept up with the nausea meds following TX #1 and what I experienced was what I would call mild queasiness and some acid indigestion. Thank goodness you were able to avoid chemo-related nausea!
(I had steroids today...I think they go straight to my fingertips!)
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Okay, I'm going to post a link to the "mad typist" .gif.
I'm doing it as a link because even though it's a black and white line drawing I don't want it to disturb anyone who is bothered by cartoon "blood" - anyway, this little cartoon line drawing reminds me of steroid typing!
Mad Typist line drawing animation: http://i.imgur.com/UUnU40H.gif
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kayb - I had the first chemo headache - lots of ladies get that bad headache on the first chemo but don't on later ones - combined with the Zofran headache - OMG, it hurt to lay on my pillow! Nothing touched this headache and it lasted for several days. I was given Zofran, Compazine and Ativan to be taken in that order - try Zofran first, if that doesn't work, try Compazine, etc. I had received Zofran in the hospital after BMX and it didn't help with nausea then either - they kept telling me it was leftover anesthesia related nausea - what it turned out to be was an allergic reaction to Levaquin. They figured this out when I ended up with a spreading rash that went from neck to knees and was so severe that they pulled my drains and put me on Prednisone. I did not really have nausea, I woke up on the second or third night after tx already dry-heaving which was a little shocking. I had GI surgery in '95 to make a new gastro-esophageal junction so I can no longer vomit, but I definitely go through the motions!
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I'm hoping an Ambien will keep help me ratchet it down several notches tonight. Like you, KayB, I was up emailing until the wee hours last time!
Ha, if I start emailing those bank scammers from foreign countries then I may need two Ambien (last time I took two 1 mg. Lunesta but ugh, those things leave a horrid after-taste).
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