Any Her2/Neu Starting Chemo in October?
Comments
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Cristl, my Mom had her port in last Monday and her second chemo on Wednesday. All went well, and she is 78. You'll do great, really. The anticipation is the worst part. What chemo will you be taking? Taxol/Herceptin?
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Cristl, there aren't that many people on this thread so I think it is fine for early Novembers to join us. And most of us will be around for a whole year so we won't desert you in the middle of your main treatment. If a November thread gets started later, you can always move.
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Thanks bluedasher for the welcome!
Mother78, Yes I think the anticipation of it all is horrible!! I will be taking Taxol/Herceptin weekly for 12 weeks and then Herceptin for the remaining part of the year every 3 weeks.
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Hello and welcom CristlC. The anticipation is the worst part....you'll see. I am 7 days out from my first treatment and my main symptom is loose bowl movements that won't let up. Everything tastes bad so it's hard to take in liquids. I'm hoping to feel better in a few days. Anybody else have symptoms like these?
This is waayyy better than I thought I would feel and I'm happy for that. Thanks to our friend TNT, I had very little/not much bone pain after the Neulasta shot. I followed her regimen of Claritin/Aleve for 2 days following the shot.
I'm told that this week is the worst, then next week will be an upswing.....hooray!
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Hi All,
I know i haven't posted in a while but wanted to check in. On day 13 of chemo Taxotere Cytoxin Herceptin and had loose bowels for about the first 8 days or so.I have been feeling awesome now and haven't looked at the post becasue I wanted to forget about cancer for a while.
I really feel like my old self again!
I got my blood counts today and my white blood counts are ar 2 before chemo they were almost a 5. I did not get any shots to boost them. The nirse sadi I woul dnot need them. She said just stay away from sick people and wash my hands all of the time.
My hasmand surprised me and shaved his head the other day and he looks like the cancer patient instead of me. It really made me feel good that he did that! My hair is still here but it might fall out soon. We will see!
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Sorry about all the spelling errors!
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Hi Kimmysue
VERY glad to hear you are feeling well. I am starting Taxol/Herceptin this Friday and am so scared of it all. I understand about staying about from the boards. They help so much but sometimes I need to throw my computer out the window.
I hope you keep feeling good!
Cristl
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Today was my third treatment of TCH+Avastin, this marks my half way mark of the hard treatment. Then off to a yr of herceptin and avastin. I wasn't nearly as anxious for this treatment because I knew it was the half way point of the hard treatment. Anyways, while I was there I was looking at a magazine and there was a couple articles about BC. In one of them they were talking about some of the new vacines in trail and they said HER2+ was the most common form of BC. I thought it was the other way around, am I mistaken?
Hope everyone has a GREAT weekend.
Angie
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I think you are correct, Angie. Everything I have seen puts HER2+ at 25 to 30% of breast cancer. But it is aggressive so having a vaccine to prevent it would be great news.
I'm not sure if I have posted in this thread about how my first chemo went. The short story is - my body on TCH needs something to bring the white blood cell count up. Having neutrophils go to nearly zero (neutropenia) isn't fun. I'll be getting Neupogen for my further treatments. I posted more on the TCH thread in chemo and some on the October 08 thread there too. I'm still feeling a little weak but heaps better than I was from day 3 to day 10. It was hard to even sit up for an hour or more.
Today I took a little walk and it felt nice. Though the reason for the walk wasn't that nice - our roof leaked a bit during the last rain storm. The time since we last replaced it and an inspection say it is time to replace. We live in a large sprawling one story so that costs a pretty penny - but we knew it was coming so the money has been saved for it. So the walk was with the roofing contractor to look at other ones on our street to help decide which product to go with.
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I am jumping in-- my surgery (left masectomy) 10/20 and I am now getting oncology opinions -- my HER+ status is newish (2.3 on the FISH) It also appears to be fairly uncommon for pleomorphicl ilc -- . Per my visit with Sloan/NJ the protocol is the AC-2mos/TC 2mos and Herceptin weekly during chemo and every 3 weeks after for the year. They also have a clinical trial of Taxol + Herceptin weekly for 4months and then herceptin only.
I have two more visits ... my sense is that they will have similar approaches.
I would like to look at the Taxol + Herceptin route... and will check the board
I guess I am in the early Dec grouping... I will tag along...
Another question for you all I am planning to continue to work full time (as much as possible) through this... and will appreciate any feedback on this...
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Welcome mattscot !
I am on Taxol/Herceptin (then Herceptin for a year), and also a lady who works full time out of the house. However, while the total treatment time is the same as the weekly thing, I opted for higher doses less frequently (once every three weeks). I know a couple other ladies doing the weekly Taxol/Herceptin thing.
I will see if I can get you hooked up with them.
Jill
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Hi Ladies. Just popped in to see how everyone is doing so far. I'm on day 11 after my first TCH and I'm feeling wonderful. It's so good to feel like myself again. I wasn't too bad after the treatment, just intestinal problems and no appetite/funny taste in my mouth for several days. Oh, and one more thing....a VERY drippy nose. I'm told that this is a side effect of the Herceptin??? It only lasted for a couple of days and went away almost overnight.
Enjoy this wonderful weekend and keep smiling everyone!
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Hello again ladies,
I am on day 17 ... my hair is shedding now and I get a knot in my stomach thinking about being bald. Part of me wants to get it over with and shave it. But I must admit I am not ready to look like a real cancer patient yet!
Everywhere I go I have stands of hair and if I pull hard enough a lot comes out. I do have a human hair wig ready to go.
I am glad so many are doing good with the side effects.
My2boys...My nose ran and I thought I had a cold. My friend who just finished all of her treatments said that her nose ran a lot. So it seems to be a common side effect of Herceptin. Glad you are feeling great. I started to feel good again around day 8. Enjoy these good days and don't think about the next treatment until it is time. I just live day to day now can't even think about the future.
Angie... When do they expect a vaccine? THAT WOULD BE AWESOME!
Bluedasher...It does get much better. I feel great right now and am so happy! I am sorry the WBC was so low. Mine got to a 2 and I did not need the shot.
Anyway hang in there. Here is the list again do I need to add anyone? Please let me know!
With Love,
Kim
August 18 - Chelli - Treatment: Herceptin, Cytoxan, Epirubicin, Taxotere, every 3wks
August 29 - Gayleee - Treatment: 6 rounds of chemo on a 3-week cycle -- TCH the first week, then just Herceptin the next 2 weeks. Then Herceptin once every three weeks for a year
Sept. 18 - Christina 66 - Treatment:
Sept. 22 - LuvLafLern - Treatment: Herceptin and Taxol for the next three months every week. Then it shifts to FEC and Herceptin
Sept.?- KLF - Treatment: TCH X6 every three weeks
Sept. 25 - Terille - Treatment: AC+H
Sept. 26 - Anglo74 - Treatment:TCHA X6
Oct 2 - TNT - Treatment: taxotere, cytoxan and herceptin for 4 tx, every three weeks, then a year of herceptin only.-
Oct. 2 - Dee Marie- Treatment:
Oct. 2 - plakatakr - Treatment: taxotere, cytoxan and herceptin for 4 tx, every three weeks, then a year of herceptin only.-
Oct. 9 - pandazankar - Treatment:
Oct. 15 - Zaks Mom- Treatment: AC
Oct. 16 - StrongMom - Treatment:
Oct. 23 - KimmySue - Treatment: TCytoxinH x4 Herceptin once every three weeks for a year
Oct. 23 - Jill323 - Treatment: Taxol & Herceptin for a year
Oct. 27 - Bluedasher - Treatment: TCH X6- Herceptin once every three weeks for a year
Oct. 29 - My2boys - Treatment:TCH X6- Herceptin once every three weeks for a year
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Kim -
As usual, thanks for for keeping track of all of us. For clarification, mine is Taxol/Herceptin every three weeks for twelve weeks followed by the continuation of Herceptin every three weeks for a year.
I go in for round 2 next Wed. !
Good luck with the hair thing. I know how aggravating this can be. I have been shedding over the past couple of days. Got cut real short this morning and am in a hat now. I like shedding into the hat better than shedding all over the place, which is what I was doing. My scalp feels a little better now too !
Jill
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Day 13 and for the first time since day 3, I feel well and normal. It has been a very dark deep pit. I hope that giving me neupogen next time keeps me out of it.
No sign of hair loss yet which leaves me with a bit of a quandry. I'm at a business meeting all next week. Do I buzz it tonight so it is short for falling out or do I go on my trip with it long? At this point, it might be fine through the week or it might start falling out in the middle of the trip. My hair is thick and curly so my hats bought for hair loss won't fit well until I lose a lot or get it buzzed but I can use scarves next week if needed. I think I'll leave it as it is now, about 5", and see how it goes. If it really bugs me I can get it cut mid-trip.
KimmySue, when you say your WBC got to a 2, the usual measurement is in thousands per microliter, uL,, so that means 2000. Usually around half or more are neutrophils (the bacteria and fungal fighters) and a normal WBC is around 4.5 or higher so a normal level of neutrophils is over a couple of thousand per uL. My lowest neutrophil level was with a WBC 1.7 and neutrophis at 7% of the white blood cells so I had around 100 neutrophils per uL. I was told that it is the low neutrophils that caused the problem. Your WBC of 2 wasn't much different from mine but maybe you had a better percentage of neutrophils.
Mattscott, I'm planning to work full time through chemo (TCH). I'm an engineer working from an office in my home when I don't have business trips so I can take breaks as needed. My boss is flexible about which hours I work. That didn't work out well this time. With the WBC/neutrophil problem I had about 5 working days when I was able to do very little. I'm hoping future cycles will be better since I'll get Neupogen right away. (Not everyone needs Neupogen or Neulastin; some oncs use it for everyone anyway and some, like my onc, start out without it and add it if there is a problem.) My job involves travel to meetings that are fixed in time a couple of years in advance. Fortunately I was able to schedule my chemo so that 3 of the 4 meetings that fall during chemo fall in the low SE 3rd week of the cycles. The other one my boss will cover. He will also understand if I have to skip one of the other meetings but I'd rather not.
If your doctor doesn't advise Taxol plus Herceptin, you might ask about TCH which was tested against AC-TH. It is about as effective with less heart impact and lower short term side effects.
It will be easier to work full time during treatment if you work for someone who can be flexible if you have a bad cycle.
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Forgot to add that my next chemo is scheduled for Nov 17.
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I just had my first chemo (Taxol/Herceptin) Friday, November 7th. I will be doing it weekly for 12 weeks and then Herceptin every 3 weeks for a year. My next one is this Thursday, November 13th. I have felt ok this weekend but haven't been sleeping so the stress of it all is getting to me. I am also single and working full time. I am not looking forward to getting up and gong to work tomorrow. HOpefully I can get some sleep tonight.
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Oh CristlC I hope you get some rest. Glad that the first one is behind you, right? Do you have anything to help you sleep. I'm taking Ambien on the nights I'm stressed and it seems to do the trick. I use it maybe 2 or 3 nights a week.
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Hi, Cristl - Great to hear from you. Sounds like you weathered the first one pretty well. The other thing that may be keeping you up is the steroid they ask you to take ahead of time and that they give you in the treatment (at least they do this for me). That darn thing makes me hyper, but I know it is a good thing. Once it wears off (usually takes a day or two) I can sleep better.
That said, I do take (low dose) Xanax as well before bed. Works like a dream for me !
Please let us know how things work out for you. Take care.
Jill
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I'm feeling pretty good, that means it's almost time for #3. Nov 14, we add Herceptin this time. My hair is almost gone now, just a handful of stragglers.
Good luck to all those having another round this week!
Linda
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HI All,
I did have a reaction when they started teh Taxol - I started to itch across my chest. Strange. So they stopped the Taxol and gave me MORE benedryl and MORE steroids and then restarted it. After that things went ok. However, maybe I had way more steriods that I needed and that has been causing my insomnia??? I am a bad sleeper anyway and normally take an ambien. I was even staying up through the ambien. I had my arm port put in last thursday so that is still sore and also keeping me up. They said that would take about 10 days to feel a bit better.
Next treatment this Thursday!
Jill, they did give me the cream to put in the port site an hour before I go in. That needle they used looked like a nail!
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I shaved my head on day 16 after my first AC treatment. My scalp was so sore and it was falling out at a good pace, although it probably could have taken another week or so to come out completely. But I thought I would take control and buzz it now. It definitely was tramatic and so hard, but after a few days it got easier to look at myself. I picked up my wig and got lots of compliments which also helped. Now it has been about 1 1/2 weeks and I've gotten pretty used to it. I am more comfortable in hats than my wig. I got some cute hats at Target this weekend. My next treatment of AC (third) will be on the 17th. I am looking forward to having this week of feeling good before then. I actually feel almost normal..energy wise. My last AC will be the monday after Thanksgiving then 2 weeks later I start Taxol/Herceptin for 12 weeks. I have been told that the Taxol will be much easier on my body than the red devil and cytoxin. I hope so! It has been a challenge mentally and physically. Stay strong everyone......
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Hello again everyone,
Today is day 19 and I have lost about 1/4 of my hair. I might shave it soon.
Bluedasher... On my chart for my WBC's it gives a range between 3.0-10.0 in between that range is what is considered normal. Where it says WBC mine was a 2.0. LL this may mean micro liter. I am not a math person at all. I know you are an engineer so you must be more technical than I. I will ask my onc. when I get treatment this Thursday. Good luck on your treatment on the 17th.
StrongMom37... I know about the hair thing. I just ran my fingers through my hair last night and it just kept coming out and out. I found some really cute hats a Target too.
Crystal C...I did not sleep well after my 1st treatment. Not sure if it was the steroid or my nerves. Probably a little of both. I was cranky too. But after day 2 had not problems. You can ask for help with sleep.
Good luck ladies and hang in there my next treatment is Thursday will let you know how it goes.
With Love,
Kim
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Hi all,
Just wanted to pop in and say I'm scheduled for #4 this Thursday. I am feeling pretty well, but still handing on to the paranoia that the chemo isn't working. I know, I'm a freak.
Katie
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Katie,
You are not freak. I myself have often wondered if it will return and if it is working. I just met a lady who had a less than 1cm tumor with double mastemctomy and no chemo. Hers did return in the chest wall and the liver 4 yrs. after her initial diagnosis. She did not do chemo the first time. Now she is stage 4. Cancer coming back is a very real concern for all of us. When I met her if freaked me out and I could not sleep that night. Just try to enjoy the good days now. Hopefully it will not come back.
Kim
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I'm feeling pretty good (day 15) but my nose is drippy and when I blow there is often some blood. I guess that's the Herceptin.
KimmySue, I tried doing some searching but didn't find anything out about LL as a unit of measure. I think it must be something like thousands of cells per uL (or 10^9 cells per L which is the same thing) because the range is about the same. My lab says that 4.5 to 11 is normal for a non-pregnant woman but they also say that different labs use different ranges for "normal". My pre-chemo level was about 8 with 70% neutrophils. My low on neutrophils was 1.7 with 7% neutrophils. I sure feel a lot better now that my white cell counts are back up. I'm glad I won't go through that again.
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Bluedasher,
My Pre-Chemo level was 4.5. Will find out on Thursday what that means.
My nose was very runny and still is occasionally with the Herceptin. I also had a blood in my nose as well. Just when I blew my nose. I did not blow very hard so it wou;d only bleed a little.
Kim
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Has this happen to anyone? Last night I was exhausted. My arm hurt from my port (just put in last Thurs) and I was beat. Then all of a sudden my hip started hurting and it felt like I was having some sort of allergic reaction... my chest felt like someone was sitting on it and it was hard to get a breath. Anyway, I ended up calling my oncologist and he got right one the phone. He said it was probably side effect from teh Taxol/Herceptin. He said in the weekly doses you usually dont experience too much of this but............. He thought the feeling in my chest could have just been joint/muscle pain. Anyway, I took 10mg of Ambien and a benedryl and went to sleep. I feel better today but can't believe I have to do this again Thursday. Maybe my body will adjust. I am just so uncomfortable between these expanders, port, achy, tired, stiff...... ok, will stop my pity party and get to work. I hope everyone else is feeling good!
Cristl
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Could the hip pain have been Nuelastin or Neupogen bone pain?
I haven't had any breathing problems but my heart sometimes races - I assume that is the Herceptin.
I hear what you are saying about the accumulation of discomforts. My port went in almost 3 weeks ago but the spot on my chest is still a bit tender. And I've got bursitis in the shoulder on the non-cancer side - it probably would have been cleared up by now if the cancer treatment didn't interfere with therapy. For me, it is all pretty good during the day but difficult to find comfortable sleeping positions at night - especially this week in a hotel without my own pillows.
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Cristl,
I am so sorry you are having that trouble. I am not on the same meds as you. I did hear that the Nuelasta shot can cause bone pain. Did you take a 24 hour Clariton before your shot (in the stomach)? It is supposed to help with the bone pain.
In regards to the port. I had it placed in my arm and it hurt really bad for exactly 7 days. Then the pain magically went away after that. I still have a large bruise on my arm and I had it placed over a month ago.
I don't have expanders but I heard they can be itchy. I know sometime it just seems like too much to bear. Hang in there your port will get much better soon. I hardly even notice it any more.
Kim
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