TRIPLE POSITIVE GROUP
Comments
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Lee..
Her 2 pos protocols are pretty standard. I initially looked for a female MO Who specialized in breast cancer but would have had to go into Sloan Kettering and am not comfortable with such a huge institution. You can easily get lost in the shuffle.
There are a few variations of Her 2 pos chemothat you noted that are used in this country . Finding a team you are comfortable with and confident of is really important and not always easy.
Many of us in this forum got neo adjuvant chemo but offhand I'd say the majority had surgery first and then chemo. I had TCH X 6 every 3 weeks then 11 more herceptin every 3 weeks.0 -
LeeA - my doc is with US Oncology also. And, I had Taxotere/Carboplatin/Herceptin once every three weeks and really didn't feel like driving the 30 miles home that I had too, and I don't live in a city, then had Herceptin weekly during chemo altogether about 18 weeks, then went to herceptin every three weeks for the balance of the year.
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LeeA - the TCH vs Adriamycin thing is hard to decipher. There is a slight statistical edge to Adriamycin, but it comes with cardiotoxicity issues. TCH is easier on the heart because it does not combine an anthracycline with the cardiotoxicity of Herceptin. Dr. Slamon is said to prefer TCH to AC-TH for this reason. My oncologist treats lots of BC patients and never even mentioned using Adriamycin, it was TCH from the start. Because approximately 25% of BC is Her2+ I think most busy oncology practices that treat a large number of BC patients will be pretty familiar with Her2.
Here is a BCIRG006 link that shows both drugs.
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and I had surgery first, then chemo - glad I did.
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Ahhh, Eileen, poor you. That sounds like quite a day, but yay on the good news! I'm dreading getting mammos again.
Are there gloves I can wear instead of frozen peas? If so, where do you find them? Or do I just freeze some gloves I already own. ugh...I hate cold.
On a super sweet note (and it made me cry) my male coworker and his wife and 3 kids made me a beautiful chemo blanket this weekend. It is all warm, 2 layers of fleece and the sides are all tied together. His wife had breast cancer 5 years ago and is doing great. She was her2+ like the rest of us. I have been so touched by so many during this experience. Ah shucks, I'm gonna cry again....
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Hi guys! Just wanted to say hi. I haven't been around for a while because I was hospitalized for all of that colon bleeding, which turned out to be a pretty bad case of colitis. Doc thinks Tykerb was the culprit, so I have discontinued that, which is a bummer. He said I always had the option of resuming it after surgery when I get my additional 40 weeks of Herceptin.
I may also have a gallbladder issue. I have confirmed "sludge," and a dilated biliary duct, along with what feels like severe gallbladder attacks requiring pain meds, but docs aren't sure whether it's the colitis causing the pain, or actual gallbladder problems. I am seeking a second opinion from a GI doc in STL who works out of the Siteman Cancer Institute (where I am treated) once a week. So she has lots of experience with cancer patients.
Anyway, I am sure I missed a lot, so I will go back and read the posts. Hopefully everybody is doing ok! On a good note, we just found a young engaged couple (family friends) who can come over on a daily basis, or as needed or whatever, to help with the kids (2, 4, 6, 8, 10) and the house. I am so tired and just can't keep up. I keep telling my husband I need an "Alice" LOL, but this is probably as close as I'll ever get!! Lol. Hugs to all my pink sistas!!0 -
ashla - was your team comprised of doctors in the same group/building? That's how things kind of started out for me (breast surgeon, (3) plastic surgeons, (2) oncologists, radiologist, etc. at the same center) but since I haven't met with the oncologist yet I'm feeling out of the loop on that end of things.
SpecialK - thanks for the link on the comparison study! Several years back I was told I have mitral valve prolapse so I'm kind of nervous about the possible heart problems. I took a diet med short-term that ended up causing heart problems in some people. I never feel any symptoms from it and never think about it other than prior to a dental appointment and even those protocols have changed (although I did have to take 4 erythromycin prior to the biopsy and 4 following the biopsy).
LindaKR - thanks so much for the mention about how you felt about making a 30 mile drive after treatments. I really want to be able to do this without impacting my husband too much. I ended up emailing someone from this board who is also triple positive but hasn't been around for a while (because she's been busy). I wanted to ask her how her experience was with the oncologist who is much closer to us and she was very happy with him so for practicality's sake I'll probably end up going with him. The oncologist who is part of the same group my BS is in is downtown and that also involves more traffic. Also, thanks for the mention on having surgery first. I really started getting worried about that earlier today - probably because I haven't had a chance to talk to the BS, who has been my point man in all this, since finding out about the HER2+ thing.
Pbrain, that was so nice of your co-worker and his family! Every time I go back to Indiana I'm reminded of how friendly people are back there (my son and mom live in Southern Indiana and I used to live there as well).
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Nicky- good to hear from you. You are really going throughout the gamut! My prayers for you sweetie. I'm glad you have friends to come over and help. Just focus on you and get better. (((Hugs)))
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Thanks Lee, I'm just loving my hoosiers. I'm originally from the Philadelphia area and have lived all over for my education. I know there are good people everywhere, but they are extra special out here!
Nicky, I'm so glad to see you back. I was wondering about you. I'll tell you, I still have my gallbladder, but everyone I know who has had their's taken out says it is like a little slice of heaven. Easy surgery and you feel 100 times better. I'm dealing with a super sour stomach these days and kind of wonder if that and stress might be why.
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Shore I was told I only needed to have my port flushed once every 3 months. That's what I did and have had no problems.
Lee most of us had treatment every 3 weeks but some more often. Also if you get nuelasta some had to come back the next day to get it. I had mine delivered to my home and my husband gave it to me. You'll have to check to see what they want to do.
Yay Eileen
"I'd like to see him remove his testicle and replace it with a bowling ball and see how he feels" OK that cracked me up.
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Lee - I didn't have neulasta, my counts always were up enough before the last treatment, but a lot of other people, probably the majority, do get Neulasta.
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Nickybean, glad you got that situation figured out! And take all the help you can get
Pbrain, its amazing how people really come through with support and such thoughtful gestures, isn't it? When im feeling really crappy about this turn my life has taken, I make myself think about all the incredibly nice things people did for me through it all & it always makes me feel better and really blessed.
Eileen, great news to hear.0 -
Hi everyone! Sorry I have not posted in a while...I have been trying to get some side effects under control still. Turns out I have a fissure...not fun at all. My dr really wanted things to be better before surgery...
I head off for my bmx tomorrow. I am as ready as you could ever be. I am hoping for permanent implants...but, I might need expanders.
On that note..i am sorry rozem, I hate it that you are still in pain. There has to be something that they can do to make it better.
I know I have missed so much...this thread moves quickly.
I hope you all are well...I will catch up after surgery. Until then take care:)0 -
jennifer - I wondered where you have been - good luck tomorrow!
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Jennifer, good luck tomorrow. I recently saw a video about waking up with actual implants (versus tissue expanders). You might have seen it, too - it was from an episode of Dr. Drew. I think would be an absolutely wonderful route! (Editing to add - I love your photo)
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lago and linda, another med to look up (Neulesta). I was just reading a few pages from the September archives about all the MUGA/EKG/Herceptin/heart stuff. I guess all this understanding comes with time and reading the boards/researching. It's so overwhelming.
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Nicky - I saw some of your posts about the size of your tumor and the way it was shrinking (and leaving holes behind) and was so amazed/fascinated/excited by it that I copied the post and sent it to my husband. Also, Congratulations on finding a couple of stand-in Alices.
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SpecialK - it must have been so hard for you to see your brother go through all that - and for his sons to lose the rock in their life.
I went home soon after my dad was diagnosed. The first morning after I arrived he fell. He was trying to get out of the hospital bed that had been delivered to the house. I tried to pick him up - BIG MISTAKE (I was still asleep when he fell - it was early and I had gotten in late the night before). He knew he needed help to get up but for some reason he just took it upon himself to try to get out of bed. My mom had left the room for a minute or two to get something in the kitchen. I think he held on long enough for me to get home and then he hit a fork in the road. We had to call an ambulance and he was in the hospital from that day until he died two weeks later. It was as if that fall was the last domino.
Damn cancer.
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Nicky, glad you know what the problem was. (D*mn "scenic detours")
Eileen, happy for you.
Pbrain, you DO have good friends. Maybe I could borrow them? LOL
Lee, I had the "big" tx every 3 weeks. (TCH) then in between, had Herceptin only. After 6 tx, then went to Herceptin only every 3
weeks.
Jen, you and grit girl are having BMX's tomorrow. You will both be in my prayers.
Shore, I am also trying to figure if I am keeping my port. My onc suggested removing it and it caught me by surprise. Guess I was hoping I could go back to Herceptin.
Leea, I met my onc last, because they didn't expect IDC, just Dcis. So IDC and Her2 meant chemo so I met him after my surgery. I am sorry about your dad, it is hard to lose a parent. Also o had to travel 30 miles to my chemo at first til they opened a new clinic 5 minutes away .
I am going to end this post before I lose the post like last nite.
Much love to all.0 -
LeeA - Neulasta helps increase your blood counts faster, it's given the day after chemo each treatment, some people start receiving after their first treatment. My MO waited to see how my counts rebounded the after the first treatment. Mine were always back up to just normal in time, so I didn't need it. I had a couple of EKG's during Herceptin to check my ejection fraction, it stayed steady, if it drops much, then they consider cutting back or stopping your Herceptin. It's a pretty rare side effect, but it does happen, the docs are on top of it though. Some have MUGA scans instead.
When you have AC-TH instead of TCH, there is a delay in starting the Herceptin, as they won't give it with the adriamycin, they wait until you are done with that and then give it with Taxotere or Taxol. There's more risk of having a heart problem with the AC-TH, I have a young friend, in her 30's, that received that combo. Not sure what the criteria is that doctors use to decide which one to use, most people treated at my oncology center receive TCH.
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Bren, if I.didn't say helo, sorry!LOL
Rozem, so sorry you are still in pain. Maybe the muscle relaxers Kayb suggested will help. Also, do you go to PT? Or chemo rehab? They may actually be able to help. You are in my prayers
MsTori, I hope the chemo leaves you fast, but please realize it may take a while. Don't want you disappointed if it takes a while. On the other hand, if it clears fast you'll be pleasantly surprised.
Ok, think I answered everyone I could, if I missed you, please be aware I DIDN'T MEAN IT! LOL
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soltantio: "Oh my goodness, I remember thinking, is LeeA crazy or waht?"
The short answer is YES! Oh, and I'm on now on page 69.
Thank you for your insight on Dr. Slamon as well as distance/treatment centers, etc. I think the HER2+ thing has freaked me out more than anything else which, in turn, has put me into OCD overdrive. Maybe because I found out in the midst of the plastic surgeon fiasco. I knew it was an aggressive tumor from the day of the DX but I've been very basket-casey since Tuesday of last week (a few hours after we got home from the pre-op appointment).
There's a hospital almost within walking distance of our house. That one would be the most convenient. (eta: I just checked their website - looks like no chemo facilities there)
Re: seeing Dr. Slamon for a consult - when I called UCLA today (actually, yesterday - Monday) they said they never know when he'll be available for a consult. He just calls out of the blue and says "I'll be available such and such day."
Also, I will google aphinity trial right now.
Linda, thanks for the rundown on Neulasta! One thing I did know about it was this: take Claritin prior to taking the Neulasta (I have a screenshot of that bit of advice).
Moonflwr912 I bet you were glad to cut out all that driving when the center opened near you! Thanks for relaying the timing on meeting your oncologist. Earlier today I was feeling really nervous about the oncologist part of all this so reading your words helps to ease my mind.
P.S. soltantio - there's a discussion on cording on page 52 of this thread.
http://community.breastcancer.org/forum/80/topic/764183?page=52#post_2393768
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LeeA,
My MDs were technically not part of a team but they worked together frequently and were on the local hospital tumor board. My BS sent me to the MO for my first consultation.
At this point in my treatment I would say it has not been a huge advantage that they work together. I would advise you find the BEST of each regardless of their relationship.
NICKY and Jenn....oivey as we say in NY! The best to both of you! Some of us get to take the scenic route to the finish line.
Lago..
Interesting on the port issue. I was told it needed to be flushed every 3 weeks initially and then one of my mds said 4 weeks . My BS told me if I wasn't planning on using it again that it wasn't necessary to flush it so soon. In other words there was no great hurry in port removal surgery.0 -
Rozem, I am so sorry you are going thru this! When I had my BMX and expanders put in in 2000, I remember feeling like my chest was on fire for the first 2 weeks and then just hurt like crazy for several more weeks after that, especially when they would add saline. I don't think I slept at all the first week because of the pain. I did do PT and that helped some and my PS added the saline in small doses over several months. I hope you can hang in there and start to feel it settle down soon. I am now on my second set of implants - 1st set replaced after 9 years. After it was all over I never regretted my decision and hope you can soon get to that place too! ((((hugs))))
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Jennifer - good luck with the surgery. Will be thinking about you & hoping all goes well. Look forward to hearing from you when you are up to it!
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Thank you ladies! I am almost to the hospital to start my "dye job". Did any of you experience pain in you rib cage shortly after treatment? Well for that matter...aches and pains in general? It has been three weeks and I still feel some aches and pains:(
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Eileen, great news with the mammo! I just got the results, in the mail, from my second one since dx. All good.
Bren, we are here for you sista! Any question....nothing to personal
Jenn...ugh! I wondered why you weren't posting....take care of yourself. Good luck with the BMX!
Lee, I agree with the sage advice given here. Once tx is determined, it doesn't matter where you belly up to the bar...the drinks are the same. May as well be within stumbling distance of home.
The first chemo you will want someone to drive you. They're going to give you Benadryl. If you don't have any type of allergic reaction, you can always ask to skip the Benny, (I did) and then you are free to drive yourself. The drive home wasn't bad for me...because you really don't feel SEs until a day or so out....I usually went to the gym, then grocery shopping after
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Jenn...
Xoxoxo0 -
Great news Ton Lee! How far are u NED? My BS says we start counting @ surgery. Since I had neo adjuvant chemo the count may be different for others.
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Re the NED matter. While I do think about how far along I am NED partly because it effects the frequency of our monitoring and s ome of our treatments but mostly because of the statistics that rule our world, I don't think I'll ever feel I'm free. I hope I'm wrong and am actually hoping to just not think about it on a daily basis.
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Jennifer404 Yes I did get soreness on my ribs. It might have been the nuelasta. To be honest I don't remember. Good luck tomorrow. I know you'll do great.
Lee I did a lot of reading. You see my post count… I read at least 6X that many posts and read on other sources. It takes a while to get the knowledge… and it always changes so hard to keep up.
NED is no evidence of disease. My surgery removed the cancer so that's when I count my NED date. I still feel I'm cured but I have at least another 23 years to prove it.
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Just a clarification on what Neulasta does - it does not boost all of your blood counts - only your white cells. These are the blood cells that keep you healthy, and fight infection. Your platelets and red blood cells are not protected by Neulasta, they can be more problematic to keep at norml levels. Platelets are very short-lived and can fluctuate throughout chemo - one day good and the next day low, and generally there is a decline in red cells from start to finish. Some of us have a low enough hemoglobin (oxygenation of the red cells) that a blood transfusion is required. It is possible to encourage the red cell production by eating more red meat, high protein food, and leafy greens between tx, but this does not always work. Most people rebound on their blood counts after finishing chemo.
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