TRIPLE POSITIVE GROUP
Comments
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Now that I'm just on Herceptin, I see my onco every third treatment (with Herceptin every 3 weeks, that's every 9 weeks) with an echo every 3 months.
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I'm on a every 3-month schedule to see my onc while on Herceptin.
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My onc says I'll see her every time while on Herceptin.
Special K: Thanks for the onc information. If I can't get into Moffitt, I'll see if I can get an appt with your doctor.
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My Onc acts like he doesn't know me. buwhahahahaha.
Seriously, haven't seen him since March 22nd.
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Tonlee the only reason why I have seen my onc is we passed each other in the hall. Otherwise it hasn't been since my last chemo Jan 18th.
I have seen her NP. Once for a check up but another time she came to the infusion room because I had a list of issues. Chemo nurse gave them to her and she actually had time to see me. All other communication has been through email to the NP. NP will then chat with onc. I'm OK with that.
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Yeah I'm good with that too....except I'm also not getting any blood work. I haven't any blood work since the week before #6 TCH. I wonder if I'm back to normal yet.
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Hey Ton Lee my chemo nurse during H every 3 weeks does my blood work. Almost 6 weeks PFC & out leg pain is still present but I am working through it. Feels like arthitis from the knees down & sore muscles from the pelvis to knees. Went to the Gym this week !!! For the first time since Jan 26th I feel like me. I would not have gotten through this without you ladies and I seriously at smetimes thought I was losing my mind. With the leg pain getting better I am asking my onc on monday to finish out 5 & 6 TX. PS the Hubbs results came back benign!! But they do not know what is..
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Tonlee I did get blood work at my last chemo TX but not after. They do take blood but just to test my hormone (esterol or somethingaruther). I didn't even get blood work before surgery.
I think if you were feeling ill they would be testing you. No need for extra tests we really don't need. Just a waste IMO and part of what brings health care costs up.
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NMoss,
That's great!! My leg pain took forever to go away....
Lago, yeah I can see your point. But they told me when I started Rads that the txs affect the WBC....but I guess they would check if I had symptoms...other than burning and being tired.
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nmoss: So glad to here some good news - but hate that they don't know what it is.
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nmoss yeah on the good news! Glad you will be able to finish up and are feeling better, some day we will forget how bad we actually felt during the blasted chemo. I have a male friend that is just starting the journey into chemo and I feel so much pain for him...hope he does better than I did. I shared everything with his wife, as she is a good friend, when I was having chemo, I hope she doesnt remember how sick I was.
I see my onc every 3 weeks, and i alsways seem to have a question....hmmm....maybe I just feel like i need to have a question when he sees me!? I also get bld work, and was surprised that my numbers are still a little on the low side.
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My onc said that I'll see him every 9 weeks during Herceptin. I didn't ask about labs.
Tomorrow is my first Herceptin only. I go for rads right before.
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Oooh, NMOSS - I missed your post re:DH - how scary! I'm so glad his results were benign.
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Benign Mr. Nmoss… happy dance!0
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Thank you ladies it was scary. Funny thing is my BS did his biopsy and they had to do a Stereo on him because h did not have enough breast tissue and apparently he was the first male patient of the Breast Center in the Hospital.She was very involved this go round becauseI don't think she had the heart to tell us if it went the other way. PS he got accepted into Law School in SC today.. If it ain't one thing it's another.School starts in 6 weeks...
Carberry - wow you counts are still low? Red Meat & chicken lots of leafies especially Raw Spinach? No Dairy it really helps. My numbers never dipped oddly enough but again I was on Nuelasta also. I hope I can put this behind me, I feel like I have PST the idea on the Nuelasta pain sends me to tears..
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Anyone taking in the new girl? Diagnosed in March, just had my first day of AC today. Point me in the right direction of some info on being +++?
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It seems likes there's no set protocol- I just thought every six weeks seemed excessive but now seems average! Thanks everybody!!!
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Welcome shinypop!! Drink drink drink, eat as much as you can in little amounts, take anti-nausea if you need it. Hope you have no SEs!!0
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nmoss - yay for the B9 result for hubs, and congrats to him for the law school acceptance! Where in SC? Are you going too, or staying put to continue treatment? I am having leg soreness from my first H only - wonder if H was causing problems for you all through? Also, my counts, including WBC are lowest ever. Hemoglobin finally came up a point but it is only at 10. WBC is at 2, and was never low all through chemo. I am supposed to have surgery on 7/20 so they better come up - I am sick of this prosthesis!!!
TonLee - if your WBC is low you will be symptomless. Low RBC and Hgb will make you tired and make your muscles burn. If you are curious just get a CBC. I now get one every tx day instead of every week since I graduated to H only.
shinypop - welcome! Sorry you are in the club. Keep ahead of nausea by taking your anti-emetics on schedule, do not wait until you feel nausea. Try to eat a little throughout the day as omaz said. Take your temperature for the first couple of days to see if you are running a fever. Moisturize your skin - it gets really dry.
ArleneA - you are welcome. You might be able to be seen at Moffitt because of the issues you have had. Personally, I find it oppressive because there are so many really sick people with so many different kinds of cancer. The onc office I go to is much more laid back, but has great resources. They are very organized and efficient.
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shinypop I will repeat drink the water. Also if you can keep up the activity (walking) then do it. Even if it is just 15 minutes but on the days you just can't do it don't feel guilty… relax and rest. I had TCH so I don't know crap about SE for AC. I hear it is the really good stuff though when it comes to killing those cancer cells.0
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TonLee, I am with Lago on the sleeve-prevention of LE.
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thank you, everyone, for your responses!! you guys are absolutely wonderful ... kind and loving. i feel a lot of support here that i don't feel from my adult kids. its' really, really weird. i'm still trying to diagnose all that too, but it's all good!! i'm trying to do something i've never done with my kids and that's take care of myself and say no to there requests. i keep remember that NO is a complete sentence. ha!
again, thank you for all the information i get here.
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Thanks for the welcomes. It's nice to have a group that has been/is going through the same things. I think I'm rather lucky that I don't have to worry about family the way alot of you do. I'm single and have a cat and a rabbit. Both very sweet and loving. So far I've eaten a banana and had some ginger ale because the nausea is really low key. Almost like it's psychosomatic more than anything. But once it hits me, I will know and immediately take something. Any hints on more info for me about being triple positive? Or at least Her 2 +?
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Shinypop--There is a lot about this that involves your mind. There are enough SEs that are real that you don't want to talk yourself into more, assuming that you have to have them. The nausea can be very real, but it is not a given. I can't say I felt like eating after the first TX but have never had any real nausea. I take the zofran that I'm supposed to the first 3 days but I've never had cause to take any of the other anti-nauseas.
I'm lucky where nausea is concerned, but ask me about big D!! As with the anti-nausea drugs, do not hesitate to use an anti-diarrheal or anti-constipation drug to counter an SE thinking you can tough it out. Just deal with whatever kicks up as soon as you can.0 -
Shiny: You won't find many ILC triple positives like us out here, but the treatment for all triple positives puts us right here on this thread just the same. You will get a lot of good advice here that I haven't found anywhere else!
I started the TCH chemo regimine, but found myself with severe reactions on the second round; so finished the rest of my chemo on AC. No real sides effects, but took the Zofran for the 3 days no matter what. The Neulasta shot I think gave me the most sides effects, but nothing that slowed me down much. Maybe an overall "icky" feeling a few days, 3rd treatment (2nd of AC) was my hardest.
YaYa: I found waiting for results of everything was the hardest part of anything. I found my lump in September 2010 and naively thought I'd mostly be done with treatments by Christmas. Well, after my lump went to be tested by every place in the country it seemed like, I didn't even start chemo until February and I just finished rads two weeks ago. I'm with the others on the HER2 status meaning chemo; initial testing had me at HER2-; then my oncotype came next and HER2 status was .1 to the negative side so BS ordered the FISH test and it came back HER2+ which automatically meant chemo.
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I was supposed to start Tamoxifen on Monday (two weeks since last rads), but I'm going to wait til this coming Monday because my oldest son gets married on Saturday and I just want to make sure to get through that before starting it. Feeling stronger every day and not looking forward to starting something new. Also having some major anxiety over wearing my wig at the wedding. I am so used to just being out there with my "five o'clock shadow" head. I think it's weird I'm having more issues wearing a wig than I am going without it. I've only worn it twice and for two very short periods even.
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I too never had any Nausea and I had 6 tx. I did take the emmend the as directed day of & after but that's it. I too got the big D but after the first tx I started metamucil when I got home from treatment and kept up with it for 4 days till it passed. Kept things moving although at a slower pace.
I also never got the extreme fatigue or flu like symptoms.
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achpurple Wearing the wig is a bigger deal for us than the people looking at us. I always felt like I was dressed for halloween, but everyone always told me how natural it looked and that they all wanted to borrow it when I was done. One of the last days that I wore mine, wen to an outdoor party, and I wanted to look summmery so found a really cute, bright pattern, of material and mad a wide headband and tied it underneathand off to the side a little so the knot showed..very 70"s cute....everyone loved it so much wish I would have done it sooner. A lot of people just plop the wig on, but you can really dress them up with clips and such , makes them seem more real. Have a great time at the wedding, a great milestone to have our children get married. Started my tamoxifen the other day and no problems so far.
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shinypop, welcome to this lovely and extremely helpful place. as others have said, i'm sorry you're here but i'm very happy that you found us.
i talked to my BS yesterday and he said two things that bothered me a little: 'we got all the cancer. why are you worried about some of the cells being aggressive?' and my favorite: 'why are you so worried about being her2 positive? herceptin is a miracle drug.' i really love this guy, but i didn't love those statements. sometimes i get the feeling that these docs don't want you to ask too many questions or know too much. thoughts?
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Iago--You and I seem to be amongst the lucky ones. No nausea, fatigue of any significance, nor flu-like symptoms. I have never taken anything before or after the Neulasta. I have a day or two of lethargy, for lack of a better word, and big D hits every time but nowhere near as bad as the first TX. I just have to go easy on the roughage for a few days and deal with it until it passes. This last round--#5--would have been almost SE-free if I could have avoided the chest cold which went to the sinuses and then throat. But even that wasn't a big deal.
I think there is a mental game in this. I started off looking at everything as a potential SE. Now I'm getting bored with this routine. I just want to get on with my life and don't feel like wasting my days on SEs. Easier said than done, I know. But for our new club members, just keep in mind that you are not guaranteed to experience an SE just because others do and you may have SEs that others don't. Some SEs need attention and some will be too mild to worry about. There are no rules when it comes to chemo and SEs.
Carberry--I have been tempted on some blustery days to strap the wig down with a scarf. I don't know if it would really fly away, but the thought scares the bejeebies out of me. I'm looking at my head everyday now and can see the fluff getting longer. It's still largely grey or very light and stands straight up, so it's barely visible and covers nothing. I have half a mind to colour it so that it can start to provide some coverage.Or maybe it will just make me look even more like a baby orangutan.
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