Taxotere, Carboplatin and Herceptin
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Well Shel......I did sell out to the wig scene.
Not all the time.....but as an ex hairdresser.....my thing has always been HAIR. Mine coming out has been really hard for me to deal with! I wasn't gonna get one......but my sister wanted me to have one.......so she took me shopping for one and helped me pick it out. I feel so much DIFFERENT when I put it on........like a woman again!!! I know that is stupid.......but that's just me........
I always loved hair.....cutting hair.....styling hair......and how much it changes a persons looks!
So for me.......my wig has been a Godsend! I truly admire those that don't want or need them........
hugssssss
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Hi gang. Well just tonight feel some better. Dang this time I do believe was even worse than the last one. It is getting so hard to come out of it. I never got nauseated, but might as well have as crummy as I felt. I mean I feel terrible. So tired! I know tomorrow will be half way of my 10 days so won't be as bad. I am just wanting to take some Tyenol AM/PM and knock myself out for the night so I won't have to deal. One more poison next month to go, and I will progress to the next stage and leave this awful chemo behind me. I have never been so sick in my life. I do thank God that it is not as bad as the ladies before had to endure without the meds they have today. Just remember newbies that if you get nauseated your onc arn't doing their job cause there is so many meds to help you so you won't. Also when you have a treatment or two they will tweek your poison to make it easier on you. I think over time it builds up in my system. Got the nose bleed back today. Not as bad, but for sure it is tied to the chemo cause it cleared up for a week and chemo and its back. Outside of the awful tiredness and just not wanting to move I guess is as bad as it got this time, but man that is so hard to deal with day after day.
Welcome Blue. I never thought of the condoms being my age. Hey I am having trouble just wanting to do anything at all as I have had such problems with dryness and pain. That is one of my SE and my poor husband has to wait until my good week when I am recouping. I got Astroglyde,( better than KY jelly), and it helps, but not much. Will be so glad to get our closeness back. I figured if the chemo messes with the mouth lining that the vagina lining is the same and it can happen there too so if any of you get that you will know its just a SE.
I think the movie might have focused on the Herceptin cause actually Herceptin doesn't make your hair fall out its that dang TAXOTERE that does it. I do agree with us having to go through this loss it should have been put in the picture. I went on line and watch the movie. I thought it was very powerful. Thank GOD for Dr. Salmon and his tenacious spirit.
Well thats about all the energy I have for tonight. Carolyn I have been praying for you and your brother. Thanks for thinking of me.
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Genia;
I'm soooo sorry if I implied that wearing a wig is "selling out". I shouldn't assume that everyone knows me here, and you're relatively new. I've just always had a thing about wigs for ME....and my hair was never my strong suit anyway. My "achilles heel" is more my physical fitness, strength, etc. So NO MATTER IF MY RED COUNT WAS IN THE NEGATIVE INTEGERS I had to run, work out, etc. I just couldn't wear a wig. So I've gone around looking like a biker/pirate broad...or when commando, impersonating my own Uncle Louie. But that's me. And I think we all have to find our way of getting through. I do think that before my hair looks normal, I need to take one of my tee shirts and paint
HAIR BY TAXOTERE
in big block letters across the front. Just in case some poor schlub thinks that I look this way voluntarily. What do you think? And as for me feeling like a woman, I'm just pretty androgynous most of the time anyway, in terms of my body build, my voice, the fact that I don't have anything to put eye makeup on, my hair...but I DID give birth to and breast feed five kids. So if I start feeling unfeminine, I think about that. But Heidi Klum, I am not!
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LOL....Shel you are so funny!!!
I didn't take it as anything bad at all sweetie!!! And you didn't offend me in any way. I admire you for not being like that. I really wish I could!! I also didn't mean to imply if you didn't dress a certain way you weren't a woman. I was just explaining how I percieve ME!
Hope that clairified it somewhat........
I'm really a tomboy....don't like fancy clothes or "girlie" stuff! But when it comes to my hair and makeup........TOTALLY different story.........lmao
hugsssssss
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Genia;
I think we're cool. You'll find that people on this board don't soil themselves over petty diversities too much. We have the important stuff in common.
Hey, I gotta get ready to go watch the weekly Little League game. Have a great Sunday everyone!
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Hi ladies, especially shelbaroni. I was going back over some posts that I either scanned or missed entirely over the past few days and I am confused. Very confused. I have posted a thread about a week ag asking about anti-oxidant use during the chemo. The responces I got combined with some of my own research said NO WAY! NO anti-oxidants during chemo. I just read shelbas post on page 66 and her doc and nutrionist say they are great.
Help. I start TCH in the morning.
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Lisa;
You are just picking up on the general lack of consensus between conventional medicine and alternative care givers regarding this issue. In general, it's best to follow your own doctor's recommendations. And if you adamantly disagree with your doctor, it's best to ask a lot of questions, and if they're not answered to your satisfaction, consider switching doctors.
That said, I must tell you that my nutritionist and my doctor are not necessarily coming from the same place. While my nutritionist was in favor of my continuing the supplement regimen that I'd been on since my diagnosis, the doctor was more like "It's not going to hurt you." My nutritionist really emphasized not taking the things my doctor said not to take. So when he said, "Lay off the Coenzyme Q", I did. But I resumed it as soon as I was done with chemo.
So bottom line, go with what your doctor says. And do what you have faith in. Hope that helps.
Shelby
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My onc had no problem with the coq10 and he encouraged me to drink green tea to help flush out the chemo drugs. Since I am hormone + I had to stop all soybased products, I really miss my silk milk!
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We're fine Shelby......hugs g/f!!!!
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Thank you all for the replies and making me feel like I am normal and not crazy. This is all just so scary on so many levels, sometimes I feel like I just cannot take it anymore. I feel bad complaining, because I know there are some of you out there who are having a harder time than me. I just try to be so strong for family...I have an 8 yr. old son. It's nice to be in the midst of women who understand the fear. The chemo was scary enough, but the surgery , and rads are even scarier to me. I am sorry to be so gloomy....it is just one of those hard days for me. I am so glad I found this site, and so glad you ladies are kind enough to let me join in. We are ALL going to do fine right?
Susan
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Lisa, thanks for the info. Last night for some reason while we were watching a movie at home I reached up where to wart is on my face and just raked my finger against it. It fell off and now my skin is mostly smooth in that place. I was really surprised since it has always came back a little at this point and then just after TCH tx it would flake off again but never this smooth. I am really hoping it is gone for good now. I was dreading having it removed by a doc. It is on my fat cheek ( on the face cheek) and there are so many blood vessels there I could just see a scar forever there. I guess when you get old like me you get all kinds of moles and warts. the wart would be good for a witch costume but since I don't have any little ones I skip that. My scary thing this year is the chemo.
Shelby are you going to shave your head again? I would like to see a pic of you in the auburn afro wig. sounds like something I would like. I could go as a man I guess since I have a burr. I would get burr though since it is cool here. It is supposed to get really cold here for a couple of days but then by the weekend I think it will warm up. Just in time for our coat giveaway and it makes it hard to try on coats for people. We will turn on the air if that is the case though. I am hoping I am not supposed to take the Big TCH this time but they never really said for sure so I am going to prepare for it and also it will depend on my blood too since the platelets were low last time. I think they are better now though.I have thought that before and they weren't.
My stomach started cramping really bad this weekend and I took the meds I had from the doc and they did nothing. I had read about chewing gum and so since we had some I tried that and within 10 minutes the stomach pain was gone and didn't come back until the next day so I chewed gum again and it went away. No meds that time. I guess it depends on why you are hurting but it did work for me. I just think about the day my stomach hurt all day long and I could have done this simple thing and maybe it would have helped me. It can't hurt anything so I thought I would share this.
If I have the big TCH Wed. it will be my last one! keep your fingers crossed for me! I would like to get it over with. I was listening to a doc talk to a man last week and he told him his WBC was nonexistent. They were giving him his tx and I wondered why but of course everyone's tx is different and the docs are different in their approach. I felt bad for the man. He looked so tired. I know when my WBC are low I feel more tired but the RBC is what makes me feel tired and dizzy. I am feeling really good except for the bone and joint pains and that may be the arthritis or both chemo and arthritis. I hope everyone is doing good today. Anyone taking TCH this week? If so I wish you little or No se.
Carolyn
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Carolyn,
Good luck wed. on your last chemo! I hope everything goes well for you, and am glad you are feeling well.
God Bless!
Susan
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Carolyn;
God bless you on that last chemo. My last one was physically the easiest--I bounced back the quickest. I had some emotional issues though, which is pretty normal. I am definitely NOT going to shave my head again! But I have little enough hair to paint my Avatar arrow on top of it. My only wart is (yr not going to believe this) IN MY MOUTH! At my first dental cleaning after tx's, I found out that this little bump on my gums which formed during treatments is a bloomin' WART! Yuck. Since the virus that causes warts in contagious, it makes me wonder which one of my two younger children who get warts all the time had their toe in my mouth. Ha ha.
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Shelby, thanks for the info. I asked the chemo nurse today and she said the philosphy of the "practice" was to not endorse any alternative/herbal/antioxidnat treatments due to no federal guidlelines for supplements in the USA. That makes since - it is called CYA. So they did not say 'OH NO!! Don't do that! So I think I am just going to use my own common sence. I am not real big an heavy supplementation any way. I prefer to eat clean and pick out 2 good anti-age/metabolism products. I currently use a B-Complex and Holy Basil and that is it. I may try some green tea
Carolyn, glad I could help. Maybe you got enough TCH to kill the sucker for good! I had my first TCH today and I am looking forward to it clearing up my mild rosacea - gotta get our perks where we can!
Susan, glad this board has been such a comfort to you. I have found it invaluable for REAL LIFE information.
Lisa
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Hey Lisa! We've had our first TCH session! Sure I'll be your chemo buddy.
My doctor apparently is a minimalist on side effect medication - at least for TCH. I didn't get any IV premeds today. I had oral decadron for the day after, day of and day after chemo and oral zofran starting first pill just before chemo. I have compazine to take as needed. I didn't get IVs for benedryl or steroids. She also only does Neupogen on the first chemo - she adds it later if the labs show it is needed. Usually the first lab would be right before my next chemo, but since I have a business trip where I'll be in large meetings she wrote me up for a test mid next week if I want it. She didn't seem to think it is necessary but I pushed.
I'm kind of happy with that attitude. If I don't need them, I would rather not take extra medications especially the Neupogen or Neulastin because of the bone aches.
1st chemo went well once they got the needle in the port. Part way through that I was starting to think "Why did I get this put in?" because it was almost as bad as getting IVs. But at least I don't need to worry chemo drugs about blowing out my already limited veins for future blood sticks. I like the idea of them going into a big vein where they get diluted more quickly. And they said this was only bad because the swelling and dermabond around the incision made it hard to feel the port. Next time it should be fine.
Shelby, I can really identify - having had and breast feed 3 kids is also the most feminine thing about me.
The kids were all boys so until my daughter-in-law and granddaughter moved home with my son (he is working on his PhD and they are saving for a home). It was an all male household other than me. I'm planning on going to a Look Good Feel Better class - if only to improve my scarf tying skills, but the make-up part is not my thing. I think I will skip the wig and stick to hats and scarves. 0 -
Lisa;
It IS all about CYA. You're right. Ultimately, you have to do what your gut tells you. And it will TOTALLY clear up your rosacea for awhile. Get this-- it fried off all my actinic keratoses after the first tx. After the stage of having my face look like it had little red chemical burns all over it, my face was as smooth as a baby's butt. The nurse said it really is like a chemical peel from the inside out, which is why you don't want to have one from the outside in right now. Capice? But the sad news is that, when the treatments are all over and you start getting back to status quo, these inconvenient little dermatological grossities tend to resurface. Oh well, it's better than having cancer, right?
Blue;
My Look Good Feel Good philosophy involves avoiding mirrors after the initial getting ready in the morning and, even then, focusing on the neck down. Other than my foob port, I'm pretty happy with that part:)
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Hi everybody,
I went to Look Good Feel Good and it was excellent b/c of the particular facilitator. She was a HER2+ survivor and very upbeat. The stuff that you are given is lovely -- lots of really nice make-up -- that if you don't use can always be "regifted." (Did Seinfeld originate that term or has it always been around?)
I walked 2 miles today - lots of hills that caused me to stop and catch my breath, but I'm getting there. Next week is the first Herceptin alone -- and, I'm starting my diet to lose the 10 lbs I've gained and the other 10 I didn't need before that. Figure having a good BMI is key to non-recurrence.
We're going to the coast this weekend. Strolling and fishing. Breathing in and breathing out.
God bless us every one,
B
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Good for you, Bethany!
Hey you guys! There's a really encouraging cover story in US News this week about cancer. It talks about Herceptin, too.
Bethany: love that quote:) Keep smilin'!
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Blue when they get ready to put the needle in the port lay back in the chair and then ask them to let you know when they are going to put it in. At that time take a deep breath and as it goes in blow it out through your mouth. Strange but it does help. Feel good today and count down when it hits. Hope it isn't bad for you. The hair usually goes on the second treatment.
Carolyn I am so happy you are going for the last one on Wednesday. I will pray it will be easy for you. I will be behind you in one week.
I feel better today as it is day 6 since treatment. Tomorrow is Herceptin, the ONC and to find my dang cell phone I lost last TX. Usually the H bothers me the week after treatment, but I have been resting a lot so hopefully it will be ok this time. Have a host of questions for the new ONC so hopefully will get some direction.
Susan that is why we are here. This is for sure a scary walk, but the more you learn and move along in the treatment you won't be as scared. Yes we all , you too, are going to do fine. It took me a long time to get over the initial shock of the word Cancer. In here you don't have to be strong, as for your family. We are in this together. You think you are having a hard day, my gosh my last winnie session was awful, but it helped to get it all out. I am tired of the chemo , tired of the scarfs, want my hair back, want normal days back. It will all come and we will be one of those survivors that do the runs.
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Good for you, shelbaroni, to recommend a positive article. Maybe this will help alleviate the cyber soiling caused by the last article you did NOT recommend but most of us sickos dashed out to read anyway.
I went to my PS Friday and STILL no "vigorous exercise, sexual actvity, or soaking in hot water." Damn! There went all my weekend plans! Shel - seriously - you'd better work out a plan for non-vigorous exercise in advance or you'll get nuts. I think he really does not want me to bounce, and actually that doesn't sound like a lot of fun even though I'm in no pain, just these crazy itches. I still can't wear a bra so I hauled out all my jackets from my post-mast camouflage wardrobe. With my new fipple, the headlights are on bright all the time. Certainly not anything high school boys want to deal with in their English teacher.
Carolyn, hope you're feeling better and able to get that last TCH done this week. Brenda, too - only one left! Just about time to put that stage behind (like leaving the week of latrine duty at Camp Chemo and moving on to kitchen duty.)
Bethany - keep walking. I need to get out there - I think walking does not fall into the vigrous activity category, so I can safely do that.
My husband has started calling me Alfalfa because of the bizarre growth pattern of my new hair - sort of a mini mohawk - very odd. I have to post a picture.
Have a great week -
Sue
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Hey Shelby,
Re: that quote - I actually sent you a PM yesterday or the day before - about Annie Lamott.
Blessings,
B
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Sue,
I wanna see your faux-hawk. Please post a photo. Alfalfa - how funny!
My hair is not as long as it is in my picture.....certainly no 5 O'clock shadow yet.
Only 2 wks out -- probably going to have no eyelashes before this is over.
My eyes were streaming today while I walked -- the cool air and Taxotere.
Carolyn -- Hope you have your Wed treatment!
Brenda -- You are always so strong. I really admire you.
Love,
b
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Bethany;
I'm not good about checking my personal messages. I finally read it and replied. Thanks.
Yeah, the eye thing. Ugh. Here at our World Famous San Diego Zoo, we have naked mole rats who are blind and completely hairless and run through their little plastic tubules backward. The last time I took the kids to the zoo, I watched them for a long time. I really resonate with the naked mole rat.
Sue:
Hilarious. You need to write your experiences. You have quite a way of expressing yourself. Alfalfa, huh? One of his favorite songs was "I'm In the Mood for Love". I guess that's out for you for awhile. After all my runs, walks, and ski trip, I'll be ready to crochet by the fire for awhile. I'll probably lose five pounds like I did after my mastectomy (which I gained back during chemo). I'm one of those weirdoes who loses weight when not exercising. And then I'm planning to do the umbilical hernia thing too. So it's going to be pain pills and Miralax for me, baby. Yeah, I've read that those fipples can be pretty intense. Like the author I've talked about a few times, Patty Rodgers, in her book about her experiences, says that it seemed at first, after her recon, that she could have nursed a baby gorilla. I'm not looking forward to that. Especially since I have kids and I'm back teaching art to middle school and high schoolers. But I managed to hide my last two pregnancies until after 20 weeks with clothing (a whole 'nother story of semi-Biblical proportions). So I think I'll handle it, though it will be a giant pain in the tuchis! But thanks for the heads up!
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Hi everyone! I am not going to have the TCH tomorrow but the next Wed. I want it tomorrow! Oh well I guess I will get it soon enough. I would rather not have it at all but I guess there is no chance of that! My husband is having his heart scan on Nov. 5 and I have to take him to that and then I will have the doc and the TCH on Nov 6 and he will take me to that. He is frustrated about having 2 days off work but I told him I could take myself but he won't let me. I go for just Herceptin tomorrow. I am hoping my platelets get back up soon. I also hope everything else is good and they should be since they were last blood draw and nothing should bring them down in the mean time since the Herceptin does not bother them.
My daughter in law had a mole taken off her neck and it was cancer. It had clean margins though so she should not have to have any tx. She has been wanting have this seen about for several years but since they do not have insurance she would not. My son makes good money but she is cheap and now she is working so I guess she decided she would do it. I am thinking someone she works with talked her into it. I am glad either way she had it taken off. My brother is waiting to find out when he is having a lymph node taken out that has cancer. they said it had some dead cancer cells so I guess when he had radiation the lymph was cancerous then. they say no chemo just removal will be nec, I hope so. I know he is stressed about the wait but they have to find some blood since he has had problems finding blood with the antibodies he has. I thought I had it bad so I am going to try not to complain too much
I know I can't quit complaining!Shelby those mole rats remind me a little of myself. My eyesight was not the greatest to began with and the chemo has affected it even more and my head feels naked with this cool weather. I may have to find warmer hats soon. the bank is still hot in there though. I had forgot how warm they keep it until I was there the other day and I was sweating when I left. I keep my house cool.
My eyes are still dry but my nose runs all the time. that is so embarrassing. I can bend over to pick something up and out it drips with no warning. I know that is gross but it is clear at least. I was told since no hair in the nose nothing to stop the water from coming out. I guess it is true.
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What are you using for your dry eyes? If you are using something regularly, it would be best to use the preservative free eye drops. They are the ones that come in the little one use vials. Anything in a bottle will have preservative and can cause problems if used over a long period.
I've had laser eye surgery in the past so it is important to keep my eyes from getting too dry. Most of the time I haven't needed drops, but if I do I use Refresh Plus drops. There are also other ones that can be used at night that are a thicker formulation to stay in longer but they can make your vision a bit blurry. I only used that right after the eye surgery when my tear production was really low.
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Cupcake, we tried numerous positions to make the area lie more flat so they could access the port better. I was doing my very rusty Lamaze breathing because it wasn't just a straight poke. All the probing with their fingers to feel for the port hurt because of the bruising and then they would poke and move the needle around trying to get it in. It would have been lovely if it was just one poke and straight in. I expect it will be next time and I won't have a problem with that.
So far I'm still feeling fine except that my bursitis shoulder was hurting at 3 AM and wouldn't let me get back to sleep. I think maybe it was the shoulder pain plus steroids that kept me up. I'll have to go back to icing it more.
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Bluedasher, you might try some Numfast cream. You can order it through any dermatologist. You put it on your port area about an hour before you're going to get poked and it numbs it up so well you don't even feel the needle stick. I use it every time and it's been a Godsend.
)Aly.
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Blue do they use the cold spray on it first? I want them to spray it until ice crystals are on it..lol Also in awhile your swelling will go down and the port bumps will be more visible for them to feel. Was with mine. I hated that when they moved it around to get an access...I had one nurse that did that and moved in line so not to get her again. You might end up with a nurse that hits it right off. Steroids will keep you up. I use Tyenol AM/PM and it puts me right out.
Carolyn sorry they are holding you off again. I went in for Herceptin a while ago and feeling good today. I think the resting this time really helped. I kept PJ's on the whole time to keep me from going out.
I had the runny eyes and then found out that if I left all mascara and eye shadow off it made it better. Is there a connection? ONC today ask nothing on SE. I have the bloody nose but just when I blow in the morning cause its stuffy from the night. I did not good by changing ONC..I guess the old fashion dr is gone. In this big city there is so many cancer patients they run through Lilfe a revolving door. So will be back on the conveyor belt for the chemo and don't bother to ask. However I AM going to ask for the Dr. hard copies of his notes. They make that part all hush hush, but I am the patient and have a right to them. Feel good so going to enjoy the rest of the day. Blue let me know how you are tomorrow
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My next chemo is in 3 weeks. I'm expecting all the swelling and bruising to be gone by then and it should be just one quick stick which won't bother me.
In retrospect, even with the multiple pokes this is much better than the IV sticks. The nurse getting IV access for my MUGA before the port did four sticks but the difference was that even once she was in the successful stick hurt all the time until it was taken out and the back of my hand and inner arm had bruises that hurt for about a week. Then when they did the IV for the port installation proceedure, it was in the bruised area and that hurt (but they must have done something better because at least they didn't create new bruising and it was better a day or too later.
I have a hard time faulting the nurse for the bad stick. When she was having trouble, she called another nurse over to help almost right away and after 4 trys they called radiology to offer to go down there or someone from radiology come up to help since they have been having trouble with sticks on this port type right after installation.
How often do your oncs do MUGAs during Herceptin? My onc hasn't mentioned when it will be checked again. My MUGA was around 65% so maybe they don't do them as often when they are well above 50%.
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Every three months. I think they should. Do you feel like your heart is really pounding after the TCH? Mine sure does. But just a 1% loss is good I guess to get rid of the cancer. Yeah my vein sticks were awful and they just butcherd me. I luv my port
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