TRIPLE POSITIVE GROUP
Comments
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I actually thought that losing my eyebrows and eyelashes was the hardest part - even harder than hair loss (that could be covered with wigs, hats, scarves, etc) I lost my brows and lashes toward the end of chemo in August, and they came in again about 6 weeks later. When they came in, they came in fast.
Omg I would lose it if they fell out all together again. So far so good 6 months PFC.
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saralmom I was/am the same way. At my chemo training the NP went on and on about how women with hair like mine really get upset about losing their hair, I need to cut is short yadda yadda yadda. I looked at her and said I'm much more concerned about my eyebrows.
Seriously I didn't even realize my hair had started coming in till I grew a white mustache (which I of course removed). I wasn't checking.
But of course my lashes are now falling out 5+ weeks after chemo ended. My eyeblows thinned a little on chemo but so far I think they are still hanging on. My eyebrows don't really grow that fast anyway. Maybe that's why they were spared.
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lago - losing my brows and lashes just made me feel like I looked "sicker." Like more cancer-ish. I did have a few tricks that you might find helpful - things I did to try to make it less obvious:
I bought a brow kit at Sehpora - with stencils and powder - it helped while they were thinning and then when they were gone (I did them pretty light then but it still made me feel more like myself somehow).
I bought glasses to wear with plain/clear glass that had a frame that covered the arch/brow area completely. I tried them on and ordered them when I had brows so I could see where they sat. And the girl who worked there wisely suggested that I NOT get anti glare lenses so that there would actually be reflection and my lack of lashes would be less obvious too.
I wore dark eyeliner right next to my lash line - I needed a very strong magnifying makeup mirror for this.
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Thanks sara. I already did the eyeliner and thank good ness I have big eyes so the lashes aren't too big of a deal for me. I already bought the brow stuff and the magnifying mirror before I even had surgery. Yes that's how concerned I was about losing my brows. I use the mirror to check on hair growth on the top of my head.
In a few weeks I go back to the opthamologist. Chemo might have messed up my distance sight… I might have to get glasses anyway.
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The glasses idea is a really good one! But I look horrible in glasses....:(
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I think chemo messed with my vision too! I had been using reading glasses here and there before chemo. Now I literally can't read anything without them. I even use them when working on the computer. I asked my onc if she had ever heard of chemo affecting vision, and she hadn't, but said sometimes loss of hormones can do it...I'm not sure which it is, but I feel a million years old when I can't read a menu in a restaurant!
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Sara I bought some cheap glasses for reading menus and labels when shopping. I do have a prescription for close up (computer or reading) though. The cheap ones from Ulta are really tiny and fit into my purse nicely.
I have noticed I can't read anything anymore since chemo without them though.
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I had my third round today. I got emend this time so hopefully the nausea won't be bad. That was really the only bad SE I had last time, and it only lasted about 4 days. I hope I have as easy a time this round.
I have already noticed some thinning in my eyebrows. So far that is not a bad thing because I am cursed with Groucho brows and normally have to get them waxed every month and I have to tweeze them every day. I've noticed I haven't had to tweeze for a couple of weeks now.
Saralmom - I also have had the vision troubles and need to use my reading glasses all the time now. My onc, however, did say that chemo can cause these problems, but they may not be permanent. I need prescription reading glasses, though, because I have a lazy eye. I saw my ophthalmologist and he also suggested waiting until after chemo before I get a new prescription, because it could keep changing. He also said that chemo causes dry eyes which can also make it harder to read. I had been using systane drops 3 to 4 times a day but they were not helping and since my eyes looked very dry to him, he put plugs in my tear ducts. Unfortunately, my eyes have been running worse than ever since then. I have to go back to see him next week.
Of course, the eye problems could just happening because I turn 51 in a few weeks. We went out for dinner with two other couples our age last week and had a good laugh because we all had to pull out glasses to read the menu. I don't know why they started making the print so small on those things!
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Web,
My vision was perfect, no problems what-so-ever, until treatment. Now I can't read things really close up, and everything is "softer" edged....hoping that goes away when I'm done.
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Congrats Carberry!
Good luck Lou10! Wishing you the best!
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Back in 2004 my last eyelash fell out and into my eye. All I could think was, "Really? It just had to land there?"
I had my first herceptin on 2/18. Super gassy, but I thought it might be b/c of PET/CT and all the yummy drinks and injections the day before. Will drink more water next time. Eyes have been super dry.
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teal3pink1 the nurses in the onco group (docs too) like to report that there are not a lot of side effectswith Herceptin but I beg to differ. I get a runny nose as if I have a cold, lots of gas, and a major headache for about 3 days. Very minor compared to TC but still side effects. I'm wondering if when I get my fist big dose (the every 3 wk dose) it will be worse? Time will tell
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The onco nurses told me the chemo did affect your vision. Did not say whether it was permanent or not. I had just been for contact fitting and bought 6 months worth when I joined the club. I have monovision contacts and could not get the eyes to do their job. I feel certain that is why I was so nauseaous after the first TCH. Started wearing my glasses more and taking out my contacts before chemo or herceptin and leaving them out for a few days. Much better now, but still dry after Herceptin.
Carberry the only side effect I noticed with the 3X macdaddy Herceptin was the dry cough and may just a tad of nausea. And of course the smell complete with flashbacks to chemo. With the smaller dose I could drink before, during, after and the smell was gone by the next day. With the Mac Daddy dose it took a couple of days for the body fluids to get rid of the Herceptin smell. libraylil
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My eyesight has gotten shot this past year. I guess its the chemo. I know I need glasses. I got myself a pair of the drugstore crazy colored old lady readers, and that helps immensely. Makes me feel really old though!!!
The herceptin infusions left me with no real side effects, luckily...so as with all of our treatments...different things seem to effect us all differently. It sure would be nice if they could get that into pill form though!!! I hated feeling like I was in chemo for a solid year going into that infusion center dungeon.
They just called and had me scheduled for another ekg to monitor ejection fraction after herceptin, It was fine in December...and I am done with treatments. My onc said she has to do it as it's protocol. Sounds like a cya to me. Am I the furthest one out on this group? Anybody else have to do this?0 -
geewhiz - I am 14 weeks out and had an echo after chemo was done in Dec. My ejection fraction was 73% when I started chemo and was 55-60% at the end. This didn't seem to concern them. I hope that it comes up by the time they do the next echo in a couple months.0
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And about the eyelashes...that is funny about it adding insult to injury and landing in your eye Teal...that is totally something that would happen to me!
I am really sick of no eyelashes growing in a year later...they are super short and thin...and I am blonde so it looks terrible. I have a prescription for latisse at the pharmacy...I guess I will get back on it...it's just so dang expensive!0 -
I call the chemo room the "crack house" Too bad we didn't get a high from the treatment… people might be more willing to do chemo
I go for my 2nd herceptin only on Tuesday. So far I had a MUGA before and that's it. I don't know if they do anymore. I would think they would do one 1/2 through but maybe they wait till there is an issue. It does concern me a bit because of the fluid retention I'm having but at least I'm on a diuretic now… but only for another 1.5 weeks.
_____________________________________________________This is what it says on the Herceptin site:
Monitoring the Heart• Your doctor will evaluate your heart function before and during treatment. For adjuvant breast cancer therapy, your doctor will also evaluate heart function after the end of treatment.
• Your doctor may run tests, such as an echocardiogram or a MUGA scan, and will review your health history to see how well the heart muscle is working.
• If you are taking Herceptin and have stopped treatment temporarily because of significant heart problems, your doctor should monitor your heart health more frequently.
source: Herceptin site
Also:
Cardiomyopathy
• Herceptin administration can result in sub-clinical and clinical cardiac failure. The incidence and severity was highest in patients receiving Herceptin with anthracycline-containing chemotherapy regimens. In a pivotal adjuvant breast cancer trial, one patient who developed CHF died of cardiomyopathy.• Herceptin can cause left ventricular cardiac dysfunction, arrhythmias, hypertension, disabling cardiac failure, cardiomyopathy, and cardiac death.
• Herceptin can also cause asymptomatic decline in LVEF.
• Discontinue Herceptin treatment in patients receiving adjuvant breast cancer therapy and withhold Herceptin in patients with metastatic disease for clinically significant decrease in left ventricular function.
source: Herceptin site
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My eyebrows are coming back in, I was left with just little 'spots' toward the center after chemo. Now they are growing in and it looks a little better. My eyelashes are blond and very delicate and I didn't notice much change in them. Mostly just the eyebrows.
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lago - I found this info about cardiac monitoring on herceptin.
http://www.gene.com/gene/products/information/pdf/herceptin-prescribing.pdf
Cardiac Monitoring
Conduct thorough cardiac assessment, including history, physical examination, and determination of LVEF by echocardiogram or MUGA scan. The following schedule is recommended:
Baseline LVEF measurement immediately prior to initiation of Herceptin
LVEF measurements every 3 months during and upon completion of Herceptin
Repeat LVEF measurement at 4 week intervals if Herceptin is withheld for significant left ventricular cardiac dysfunction [see Dosage and Administration (2.2)]
LVEF measurements every 6 months for at least 2 years following completion of Herceptin as a component of adjuvant therapy.
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I just realized what CYA means!!
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My eybrows are skimpier, and getting worse. I dread the whole eyelash thing because my wig covers the brows....I have a wedding in June...my last TCH is March 22. Wedding pictures are forever...and I dread that I will always be remembered as the chemo chick.
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Hi everyone I get an echo every 3 months as protocol for the Herceptin. the local cardiologist wasnt really familiar with Herceptin, just thought it was for the chemo in general, he was very young, so we got his computer out and did a little on the spot lesson. I wanted to know if he had seen pts with a deterioration in heart function from herceptin, he didint know, but I bet he will pay attention now, and I will ask again in 3 mnths. by the way Lago..my girlfriend always said "if the just put a little wine in that IV I would feel much better afterwards"
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My neighbor died last night in his bed. Lung cancer. ~Ugh~ There are 5 people on my street with cancer right now. (They're all much older than me, but still...)
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Tonlee, I just lost a highschool friend last week to bone cancer, and a dear patriarch of our community to lung cancer. Also found out another dear neighbor, my age, just had a BMX. We all live in the same area, in a sm ,close community. We live in a community that had a lg army depot that used to store nuclear weapons, they say they cleaned up the site, but prop too late. That depot now houses a childrens residential facility, which is where I work. I can only hope we learn from the past for a cleaner environ for our children.
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I worked with nukes while in the military. And some of the things we did then, they don't do anymore. Makes ya wonder.
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Hello, I'm obviously new to this group. I just had (Feb 23) a major reaction to my second TCH treatment and now don't know what new treatment plan will be. Is it typical to retry the same treatment or to start a totally new one after a negative reaction?
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Depends on what the reactions was. Sometimes they just reduce the dose.
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Thanks for the info on the heart monitoring. I really don't feel like driving an hour to sit an hour etc...my ef was already back up in December...and onc said she had never seen anyone reverse their condition after finishing treatment. We will see.
TonLee...I had fake eyelashes put on for a few big occasions at a spa/salon.....they look amazing and were worth every penny. So with a wig and that...you don't have to be the chemo chick!!
Off topic....I just this afternoon won the second round of my city tennis playoffs!! Woohoo!!! It feels SO GOOD to get out there and kick other womens butts, lol. It makes me feel like Im getting pieces of my power back, slowly but surely.
Chemo sucks...but it teaches us to dig deep...find that place in ourselves that we know we need to go to that enables us to transcend everything.0 -
Hello achpurple - I am sorry to hear that you had a reaction to the TCH. Was it during the infusion or after you got home? I don't know what they will do. You could call your onc to talk about it. If it were me I would like to know what was being planned before I went to my next treatment, but that's just me. Glad you came here to talk about it!0
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Regarding heart scans - I have been having mugas every 3 months since just before my first Herceptin. I'm not sure what the interval will be after completing it though. I hope it's what Omaz found - I would love to not have to be at the hospital for a whole 6 months. I agree too about that damn chemo room - would love to have a pill form of Herceptin.
geewhiz - awesome about your tennis playoffs!
achpurple - I didn't have have TCH (I had ACTH) so I'm not sure about the reaction, but maybe they will change your pre-meds or change your dose. Good luck.
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