TRIPLE POSITIVE GROUP
Comments
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ArleneA - I had a terrible time with the runny eyes, it got to the point that they watered constantly, burned and ached, I had to stop working altogether, as I couldn't look at a computer screen or read for more than 10 minutes at a time, I also was unable to drive because of the tearing and distortion. I saw an eye specialist, my tear ducts were swollen shut and the concern was that as I healed from the chemo they heal closed permenantly, so the eye specialist put stents in all of the tear ducts. Though it wasn't a pleasant surgery, it was worth it, my eyes stopped running and the distorted vision went away. They took the stents out 4 months after the end of my chemo, and my eyes had healed. So if your eyes are tearing a lot, you might want to check in to this, I guess only 5% of women get severe tearing and only 5% of those need the stents. I was just one of the lucky ones. It was really worth getting the stents.
I agree with LisaGH, I had a pretty high risk of recurrence, so, even though it wasn't pleasant, I was more than willing to have all 6 tx of TCH. And I think #4 was the toughest.
Don't expect too much too fast once your treatment is done, it takes a while to recover from all that our bodies have been through on this journey. It's hard for me to accept this new normal. I think that I expected to get over this like you get over a cold, but the healing is taking longer, and I'm finding that more frustrating and depressing than going through the treatments - any suggestions?
Reading all of your thoughts very encouraging and helpful. I'm gald that I found this discussion group.
Linda
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Well put ladies and you certainly have given me something to think about. I never considered quitting Herceptin, just the chemo portion. I really have no idea how I will get to the chair again but I am sure I will. once the pain goes away and I get some relief I can get my courage again. My onc nurse said 5 is better than 4 but between 5-6 really makes no difference so for now I pray to get to the next and maybe the last and final. My Brother in law is an anesthesialogist is recommending 4 because he sees so many of his patients back in the O R because of complications from SE. It's allot to weigh.
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Lisa and all that have passed the magic 4th treatment, the end is in sight. Lisa I agree that I was willing to do whatever to kick this BC to the curb. The thinking about BC, mortality, the future,etc does get better. It has been almost a year since my diagnosis. I don t think about it all of the time anymore, bit still a lot. I have 5 more Herceptin infusions left and started arimidex last week. The times when you don t think about BC get longer, but for me it has been very slow. While I did have SE after 5 and 6 it was so much easier because I knew the tx end was in sight. Especially after 6, DH and I went for a long weekend trip to the beach. Granted it was in November, I was bald and feeling whiney,but it was needed. You are so getting there!!!libraylil
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Nmoss---So sorry on how you are feeling. I wish they would come up with a tx for us that is less painful and with fewer side effects!!! I thought I was fully recovered from my 1st round of chemo and then I got a rash on my hand and above eye and then to top it off I had a fever of 101.3 yesterday and couldnt go to my friends annual Memorial Day Bash!!! That really sucked !!!! I called my MO and was advised to keep an eye on it and call back if it went higher or didn't go down with Ibuprofen or Tylenol (it did) I think it is my sinus's (blowing crap out of nose, nose with bloody "crusties" yuck and sinus headache) I guess I will have to wait and see, but my 2nd tx is this Wednesday and I want to get it over with and not have it put off!!! Anyways, enough about me, I hope you feel better and keep in mind that each day is getting us closer to the end of this crappy chemo!!
Arlene-- Thinking about you today, I think my husband and two boys are going to shave my head tomorrow. I still have hair (but) very thin. I should of got that darn Penguin Cold Cap!!!!
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bucky I have no regrets not doing the cold caps. It seems like such a PITA, uncomfortable and $$$. While the first 3 chemos were pretty easy on me I know for sure I wouldn't have wanted the hassle or discomfort during the last 3.0
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Nmoss the chemodays were my darkest days, but they are behind me now and soon they will be behind you, and you will get stronger and feel better once that poison starts to leave your body.
I get so mad because I feel I have done nothing in my life to deserve this. I actually kind of went off yesterday on some friends(crazy cancer lady) They were discussing having no desire to quit smoking and I said to them "iam working my ass off to try to stay alive and all you guys just keep on smoking those cigarettes.!" My DH just walked away. Not fair! Why dont they have cancer? And if one more person tells me how great I look I am going to poke them in the eye with a big stick!!
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Hi Bucky thank you that really sucks about the fever & BBQ. How many days post TX before you got the rash and fever? Hi librayl, thanks too I am trying to get there!!!
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Hi carberry!!! when did you finish chemo? and when did you notice your hair start to grow again?
I am so jealous that you are done
I still have 3 more, but the good thing is that I won't need radiation and I had my implants put in at the same time as the mastectomy. Two less hurdles I have to think about. I still have hair at week 3 but very thin, funny thing ,I still condition it, don't know why , kinda of like polishing a turd , guess its a habit, ha ha ha.Heres to great hair and even greater health!!!
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NMoss-- I got the rash on day 14 and fever on day 17. I started Claritan 4 days ago, so I don't know if that made my runny nose worse. (thought it was suppose to make it better) Hoping the Claritan will help with the bone pain this time. Neulasta shot on Thursday!!! I am armed with Percocet this time, I just hope I don't become a painpill junkie after all of this is done.
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bucky13 Last chemo Feb 18, also the day I stopped working to try to get healthy for my surgery(diep) Never lost all my hair, kept some gray fuzz, and even thoug the effects of chemo kept working for several weeks out of chem (lost eyebrows and eyelashes at this point) my hair was growing in very small and sporadic places. I now have full coverage of brown fuzz, no curl yet, but being summer I am going out without the wig during the day. I wear a wig to dress up or go to dinner. Good luck with your treatment, it will be over before you know it and on to recovery. I am now doing rads, I marked my one year anniv. since diag on the calendar (oct). and that is my target date to be done and well Helps me to have a goal
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Carberry-- I am so with you on that!!! I get so angry when I see or smell people smoking!!! It is not fair!!! I had been so good to my body (exercise, eating for the most part healthy, not overweight, no smoking,although I do like to drink my wine!!!) Oh how I do miss a refreshing glass of Kendall Jackson Chardonnay
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carberry--I have marked my calendar for april of 2012 as of that time I will be done with all of the Herceptin. I am going to plan a MAJOR vacation for my family and I for that time!!! Its pretty amazing that you did'nt lose all of your hair. I am awaiting my first wash of my "chrome dome" boy is that going to be weird. Do you use regular shampoo on your head when you are bald? Any recommendations?
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Lago-- Thanks that makes me feel better!! I have heard that it doesn't work for everyone, although it is working for Arlene!!! I have fine and thin hair and my thoughts are that if you have a nice thick head of hair (like Arlene) it works better, and that my head of hair doesn't stand a chance.
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LindaKR--ur too funny, made me laugh today!!! I am so not looking forward to the eyebrow thing either. I can barely get them to look right now!! Soap it is!!
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Carberry my husband promised he would quit smoking if I were diagnosed. 3 years ago he watched his 86 YO mother die of lung cancer (and she didn't go quickly). His brother the cardiologist keeps asking me if he's quit yet and gets annoyed when I say no. He's watched me go through chemo, surgery etc. Addiction is a disease too. My husband has tried and I'm not letting him off the hook. There is no smoking in our home. I do make him walk on the other side of the street or behind me so I don't breath that crap. BTW I am one month ahead of you and I still have no curl!
Bucky I have very thick hair. It came back very thick too. I do hear some women say their hair came in thicker so you never know.
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lago - acupuncture can help with quitting sometimes.0
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Glad to see the humor back today! We all need humor!
Bucky: I'm using the ElastoGels (cost me $450) and Lago is right, they are a LOT of work but I'll tell you with changing caps every 20 minutes during chemo, the time whips by. My hair is thin and it will keep shedding (I'm told) for several months after chemo. I can't wear it down but have it in a scrunchy. The top looks perfectly normal (for now). My onc says if I'm not bald by now, I won't be so I'm hopeful. The worst part is the washing your hair in COLD water and only washing once a week. After the 3rd chemo, I started washing in tepid water and rinsing in ICE cold water which I can tolerate.
The caps work better on people with thinner hair because the cold can get through easier. Those of us with thick hair, it has a harder time getting through and you lose a ton.
My drippy nose seems much better today and my eyes aren't weeping too much but I haven't been outside.
Good luck with the shaving today Bucky - I'll be thinking about you.
Arlene
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Thanks. That's one thing he hasn't tried yet. He's even been to a hypnotist twice (early 90's). Actually lasted longer than any other method so far.
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I always used baby shampoo on my bald head. Now I have a wee bit of hair and I still use the baby shampoo!!
Want to hear something funny?? We are going to my ILs today and they will have a home made slip and slide. I can't do it being just over a month from surgery and I don't need to hurt myself! Well my 7 1/2yo son said "Ya mom you don't want your fake B to fall out"! My dh and I laughed so hard!!! He actually called it a "B" and not boob!!! LOL He is just too much!!
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karebear - that is so funny!
Lago - My acupuncture therapist does the anti-smoking treatments in the ear so it's pretty simple. She gets good results.
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Arlene--I guess I don't feel so bad not bothering with the cold caps. I have (had) a tonne of hair so it might have been a lot of effort for a small payback. Like Iago, I just felt it was more hassle than it was worth. I have had enough to worry about and, while I hate the lack of hair, I don't have to do anything more than slap a wig or Buff on. It will come back.
I do still have hair after #4. I buzzed it down when it started coming out in handfuls after #1 and then had a pile of bitties drop out after #2. What's left is the very light hair (grey?! can't be!) It's growing and I can feel the breeze wafting through it when I walk. I have course, straight hair and it stands straight up. Shiny bald might be a better look.
While I have some white space that needs to be crayoned, the eyebrows are hanging in. And I still have eyelashes. Other hair is still there too--arms etc. There's still time for it all to go, but I'm hoping.
The only bonus is that I am so low-maintenance right now. A shower or bath takes seconds. I just use facial soap on my head while I'm washing my face.
carberry--I hate the "Oh, you look so good!" too. It's as if they want to convince themselves that it's not that big a deal for me since I look OK. But it IS a big deal! I never know what my response ought to be. Probably the gracious thing would be a simple "thanks," but I don't always feel like making other people feel better about my situation.0 -
I have to laugh at the "You look so good!" comments.
I told DH that cancer must have made me very beautiful. No one ever told me that I looked good before I was diagnosed!
I skipped a party today since it's 90 degrees here and I wasn't sure how I would do in the heat with a wig/scarf. It was a pool party and my DH is working. I didn't want to feel sick/hot and have to drag 4 wet and disappointed kids out of the pool to leave.
I'm still debating on whether I should have just put a baseball cap on my sparse hair and went. I typically wear my wigs. The only time I don't wear a wig is when I exercise.
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I know I have said this before but I did look better on chemo. My onc always told me how good I looked. The steriods filled out my face nicely. No wrinkles or commas around my mouth/nose… not that I look bad now just younger on chemo. Rounded out my oval face a bit.
So yes some of those people might actually be sincere. You may look damn good.
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ArleneA Okay Why didn't I talk to you before I spent $2400.00 on a human hair wig!!! Ha ha ha It is lovely though and it is much thicker and prettier than my own. which by the way will be a dead give away for people who know me but don't know about the cancer!!! I have been pretty open about my cancer by the way. Which by the way my MO always corrects me and says "You don't have cancer now! It has been taken all out!! I am trying to make sure that it never comes back! " Which is reassuring to hear mind you, but we all know that it will always be on our mind, hopefully not so much after times go by.I just hope I can be as care-free as I was before all of this!!
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Hey Bucky: I think the way you have opted to go will work just fine for you and you won't have all the work that is involved with the cold caps. I'm glad I went this route though. Funny, my husband always corrects me too and says you don't have cancer since they got it all and I need to remember that fact.
Also Bucky - I miss my wine too. KJ Chard was one of my favs but when/if I go back to drinking wine, I'll switch to red because it is so much better for us but I'll sure have an occasional glass of Chardonnay too.
Question to all those having the face, etc. swelling. How much steroids are you on? Just curious since I haven't noticed the face swelling yet but I am only on #3. I do the 4 mg twice a day the day before, of and day after and then what they give me in my premeds.
Sounds like most of us here have always been health conscious. Go figure!
Hope everyone is having a great Memorial Day. I spent time outside weeding (enjoy the good days before #4 next week) and no tearing. Hooray! If #4 is like #3, I'll be down for nearly a week. Haven't had the bone pain since right after #1 but boy did the yuckies hit after #2 and #3 and no Herceptin so hoping now that they are adding it back, I don't have the bone pain. I didn't think Herceptin caused bone pain but making me wonder. Onc didn't give me Neulasta until the week after #1 since my 7 day post-chemo blood work showed the LOW WBCs and no reaction to it. We are all so different.
Arlene
Arlene
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Steroids didn't cause any swelling for me, just made my face red, but the chemo worked like a skin peel the first couple of times, so my skin looked really young.
I was never sure how to handle the "but you look really good" statement - what did I look like crap before? I felt like telling people "well I feel like hell", but I usually just said thank you. Now my hair is grown enough for people to think I just got a short haircut and I've lost 35 pounds, now would be a good time for them to tell me I look good!!!
Even though technically I was cancer free after surgery, and everything I've been through the last year was just to makes sure that it didn't fine a new home somewhere, I still don't feel like I can say the cancer is gone, it's great that your MO reminds you of that.
Linda
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Hi Arlene
Referring. steroids I would like to remark, was getting 32mg tablets and was feeling and looking sooo good, but a year after and with AI much worse...
best Usha
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PS...
was told red face comes from Herceptin
Usha
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Hi Arlene and all!! I spent part of the day at the pool with my boys, slathered with spf 55 and my wig and baseball cap. Haven't shaved my head yet, my husband wants me to wait until he can be there too. Very hot here 90's and humid. I love the summer though and we had a long hard winter.
As for my steroid regime, I take Dexamethasone 4mg the day before chemo and for 3 days after. I get some with my infusion too. I don't or didn't have any facial swelling yet. (just pimples ;() I get #2 on Wednesday. Looking oh so forward to it NOT!!
Does anyone start the stool softener/laxative the day before chemo? I started senokot the day of last time and it took awhile to work and when it did Oh Boy!! I don't want to do it like that again so my chemo nurse recommended colace and mirolax for one week starting the day before.
Anyonw have anything that worked well for them. The GI pain and upset was not fun!
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