Taxotere, Carboplatin and Herceptin
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Wow, there has been a lot of conversation on this board the past few days. i can't keep up but want to welcome the newbies. I can see they already have their bunks and have been welcomed and become one of the group, You couldn't have met a kinder more supportive, humorous, fabulous bunch than here at Camp Chemo.
my2boys, I am so sorry for your dx of lymphedema but I am sure that the sleeve will really help you out.It totally s**** that you must go through this but you will manage since you are so strong and have a great sense of humor.
Bold I hope that you are feeling better. I know it was hard to take tx#5 when you were feeling so rotten but now you are that much closer to being finished. What a feeling! Even though I haven't felt so great the past few days it has been so much easier knowing that I don't have to do it again.
Cakelady, i don't know what is with your onc but keep asking questions and expecting answers. My onc finally came around after she realized that I was researching and talking to others about tx. She has actually been great since we ironed that problem out. I think that some of the people from this area where I live just don't want to know too much and the Dr.s get lazy or just don't keep them as informed as they should. Of course the Dr.s are busy but i don't think that is any excuse since caring for you is their job,
All the best and hang in their everyone. I am with cupcake and will volunteer when this is over as someone walking with you makes all the difference in the world!0 -
I hate hearing that any of you have not been prepared to avoid the nausea. My oncologist seems to believe that nausea can be controlled for virtually everyone on this regimen. Here's what they do: Decadron starting the day before and then tapering to end on day 5. Emend on day of treatment and for 2 days afterwards. (Emend is really expensive and some insurance companies don't want to pay; from my own experience and what others have to say on this site, it is worth fighting for) Ativan on day of treatment and for as many days afterwards as you need. Aloxi in the IV just before treatment starts. Aloxi is long lasting for something like 4 days. IV hydration on the day after treatment (real good for nausea and other SE, but it takes several hours). Very important: Fluids, fluids, fluids. They told me to drink 64 ounces of water (or gaterade or juice) starting 2 days before treatment and continuing. Finally, they gave me a prescription for Compazine. Sounds like lots of folks get Zofran.
Question about HAIR: Tx #4 is next Wednesday. My eyelashes and eyebrows have not fallen out. Has anyone had them fall out or thin after treatments 4-6? I've gotten to accept the hair loss, but am stressing about eyelashes and eyebrows.
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Sailor, my eyebrows thinned but I never lost them or my eyelashes. I lost most of the other hair on my body but I'm glad those two hung on. For me, all the hair that was going to fall out came out by Tx 2.
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Sailor,,,,,,,,,,,,,yes,,,,,,,,,,my eyelashes fell out after ,,,,,,o gosh,,,,,,,,i think about treatment 5,,,,,,,been so long ago its hard for me to remember now. And even after chemo they continued to fall out. My eyebrows have always been thin as I plucked them when I was a teenager (I got a lil carried away back then and didnt realize that I was plucking so much, lol) and they never came back in except on the inside. The outer parts never came back in after plucking. So I have always had to pencil the ends in anyways. But when going thru chemo even the inside parts thinned out. Sometimes peoples eyelashes keep falling out even after chemo. If I remember correctly,,,,,,,,they would fall out, come in and fall out again. Guess if it bothers you ,,,,,you could do the false eyelashes. And use eyeliner,,,,,,,,that helps. All I can say is Thank God for makeup. But being 1 1/2 years out of chemo,,,,,,,,I have eyelashes again. Now the hair on my head did come in,,,,,,,,although kinda thin on the top. Ive been taking Biotin and have used Nioxin , not sure if thats really working. I have also started using a Neutrogena shampoo to get my scalp healthy, as I have read somewhere that if you keep your scalp healthy that may promote hair growth. OMG I sound desperate huh? Ive always had thin hair but not this thin. Suckkkkkkkkssssss. lol And maybe its just my age,,,,,,,as I guess as we get older our hair thins. Yikes. Male pattern baldness on women? Not cooooooooooool. lol They say to be patient,,,,,,,but for me patience is a virtue,,,,,,,,,a virtue for me thats hard to come by. Hey, I'm just glad I got hair. Guess I shouldnt ask for everything huh?
And the hyrdration? Yesssssssss hydrate. After treatment 4 I got extremely dehydrated,,,,,,,,vomiting, passing out..........it was just awful. I attribute it to not drinking fluids as much as I should have. My hubby was away on a fishing trip and my son was so worried that day that he wanted to call 911. I told him that I would be ok if I just keep up with the drinking water in large amounts. I did that and felt much better. So I cant stress being hyrdrated enough. When my husband got home from his trip and found this out,,,,,,,,,,,,,oooooooo boy was he mad at me for not calling him (although he was in Mexico out in the seas and figured he wouldnt be able to get reception out there anyways) He said I should have gone to the ER. lol But I told him I felt it was something I could deal with by myself ( you know,,,,,,,,,macho woman and all) and it all worked out fine.
O and by the way,,,,,,,,Compazine was my best friend. Worked for me,,,,but everyone is different.
Be strong.
Cindy
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Thank you cupcake, I will take all the information I learn from you to my doctor and get whatever drugs I can. If the Emend is so expensive I wonder if insurance covers it. I have Kaiser. So far they cover everything. I know I need to drink lots of water, and I think that is a big problem for me, I have never big a big water drinker, or any kind of drinker for that matter. So far I am 4 days out of my first chemo and have had some stomach aches and slight diarrhea, but other than that I'm okay. How did you get your name cupcake? I am cakelady because I am a decorator at a bakery.
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cakelady, cupcake and I are also on Kaiser. We are Northern California which can be a bit different than Southern, but I'm still surprised that you didn't get a chemo class. Sounds like something slipped through the cracks. Chemo class is where I was told that the prescriptions had been ordered and given instructions for when to take them. Perhaps everyone is assuming that you had the class so they don't realize you don't know about these things.
Did they give you a number for an oncology coordinator? That's a nurse who scheduled me for the chemo class. It's also the number that I was suppose to call if I needed advice in dealing with side effects. If you have the number, I suggest you call it and ask to get chemo class ASAP. If you didn't, you need to contact the oncology department and ask for it.
Also are you set up with a login for the Kaiser website? It has been really helpful. I can check my blood test results on-line and when I have questions for my onc that don't require an immediate answer I can send a message which usually gets a response by the next day.
I do a little amateur cake decorating. I haven't mastered roses but I like to do sweetpeas which are easy and pretty.
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Hi all:
Cupcake7: As for my lymphedema sleeve, my fitter was wonderful. She did this neat thing where she turned the sleeve so that it was inside out. She turned under the cuff about 1" so that the cuff edge was on the inside of the tube. I then insert my hand through the end where the cuff edge is until my hand is fully inside the sleeve. then roll it out over my arm upwards in the direction of my armpit. She also gave me a rubber glove but I don't find I need this. Clear as mud, I'm sure. I thought it was just ingenious. Sleeve seems to fit comfortably, sometimes I forget I have it on. My arm hasn't swelled much lately. Just have fluid collection under the armpit and haven't figured out how to deal with that yet. I keep the hand swelling under control with the glove. Two fingers in particular give me trouble. Strange.
Personally, I think lymphedema is a crap shoot. I had a left mastectomy 5 years ago and also had nodes removed afterwards in subsequent surgeries for a total of 3 node surgeries. I have criss-cross scars under my armpit from all the incisions. Do you think I have lymphedema in my left arm, Nope! My left arm is fine. I even use it for the few injections/blood pressure that I do have. I had my right mastectomy last June and I'd say within weeks I had swelling that never went away. The doctors dismissed it for months until things turned so bad I couldn't use my arm.
As for Herceptin, I've been on and off several times. I do find that if I take a break for a few weeks/months because of impendin surgery, once I restart I get the chills, fatigue and crappy feeling that I first had. If I've been on a lesser dose (e.g. weekly), then it's bumped up to a triple dose, I don't really feel the SEs due to a change in dose. I think, for me, if it's "out of my system" (doesn't it have a half-life of 30 days), then I get the SEs.
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Cakelady: I picked that name cause I am a diabetic and I can't eat cupcakes but I sure like the sound of them...lol I'm with Blue having Kaiser and you really should of had chemo 101 class. The Senna/Collace, Thermometer, and Amodium AD you buy over the counter. The nausea meds, steroids, etc they give you at Kasier. Yes they will cover anything you need outside your co pay. Keep in mind your first chemo isn't so bad. Then next one will get you so have these things on hand. The more chemo's you get the more saturated your body becomes with it so it progresses. Some fly through it with no problem S.E.'s but don't count on it. Follow Blue's advise and get an oncology number to call. They will be your life line and the nurses will be the ones that does most of your treatment. The onc themselves just monitor you. Kaiser has a slip of paper you fill out every time you go in for tx of how you have done since last one and the nurses go by that on how to help you. You do know you have to have a blood draw before every chemo...no blood work...no chemo.
Cheryl: When you mentioned it I do remember something about the tube. I will have to check in on that. I didn't get one. On that fluid they can teach you how to move it from that arm to the other across your chest. Ask the therapist to teach you. I had my Herceptin this morning and doing fine. I am taking Motrin to help the headache before it gets bad. Usually that is the only thing I experience with that. Interesting the nurse told me today when I ask her about the cancer being gone why I am still on the Herceptin and she told me that the H coats all cells, good and bad, and if any critter is lurking around that hadn't got zapped with everything thrown at it the H prevents it from invading the good cells again. I visualize the H just moving and covering everything like a protective blanket. I love you Herceptin and the Dr. who found it. I'm so glad you are back with us Cheryl. It is so good to have help with these new campers.
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Black Cohosh is a natural remedy for Menstrual Hot flashes....Doctor said that it works in some patients but not all. Takes about 5 days to get in the system to help reduce the amount of Hot Flashes! I will try anything at this point. If this does not work, he will prescribe me some anti depressent that helps...but I would much rather try the natural stuff first. You can get it at a local GNC or Vitamin Shop.
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Im going to wait until 4 weeks after Chemo is over to start rads...mostly because of my vacation the last week of June. As for the tatoo...I will probably go ahead and do that, will look just like freckles that I already have on my body anyway
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On the subject of hot flashes,,,,,,,,,,,,,,,I went thru menopause many many years ago. Took estrogen for many years and it worked for me greatly. Then I decided to do the natural methods,,,,,,,vitamins and black cohosh. Well it worked for a few months then stopped working. So went back on estrogen,,,,,,,which I used up until my diagnosis. I took Effexor for a while but that wasnt working. Then she switched me over to Neurontin (Gabapentin),,,,,,,,,you are supposed to take three a day but when I took it,,,,,,,,it made me really weird in the head,,,,,,,and felt sick to my stomach. Now I only take one at bedtime,,,,,,,,,and they arent helping. I dont want to up my dosage,,,,,,,,but next Monday I go to see the onc for a follow up and all so I am gonna ask her if I should up my dosage. She also recommended accupunture,,,,,,,,,but to be honest I just dont know who to go to. I was looking for one on my insurance plan,,,,,,but just dont know who to choose. Hot flashes suck big time. And they get worse during the summer. I have noticed that I talk in my sleep,,,,,,,never ever used to do that before,,,,,,,so I am wondering if its the gabapentin. Looked at the side effects on WebMD,,,,,,,,but thats not a side effect. Another question for the onc.
Let me know what you all do for the hot flashes ok? I would be interested to see what works for you all.
Thanx,
Cindy
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Cindy, I did acupunture,for hotflashes and sleepless nights, which took me out of my misery.
At the suggestion of my oncologist, I am also doing acupuncture to help with chemo and prevent side effects.
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I hope everyone had a great day. I have been so busy the past few days, I have lost track of what is going on here. I need to go back a re-read a couple of pages to get caught up.
Thought I would share another fun pic. This me and my horse John at the beach yesterday. Many a tear has been cried onto that horse's neck in the past 7 or 8 months, I dont know what I would have done without him.
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What a great picture Lisa
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sailor,,,,,,,,,,,,,,,,,did it work for the hot flashes? Has it helped for your chemo side effects? I have been thru menopause for soooooo many years and I thought that eventually they subside. Not for me. I know lots of gals that went thru menopause without hot flashes,,,,,,,,,lucky girls.
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If accupuncture will help the tomoxifen flashes - SIGN ME UP!
Someone mentioned ( I need to look up who - Traci, I think) that tamoxifen was making her bitchy. Yes it does. But it does seem to level out after a few weeks.
Thanks Jaimieh, I love my boy.
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The Onc did tell me that the black cohosh usually only lasts about 6 months. If acupuncture works...IM THERE!
Lisa....I have never rode a horse on the beach...that is on my Bucket List! Beautiful HORSE!
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Shari - Honey, you finish chemo and get your strength back and I will help you mark one off the Bucket List. You are only about 3 hours away and I have spare horses. It only takes me about 20 minutes in traffic to get to the horse beach.
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Lisa: Just an awesome picture of you on the beach with your horse.
Cindy: Was using the Estrogen the cause of your cancer? I can't even use the Estrogen Cream for my Vagina dryness.
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That would be awesome Lisa....You are such a sweat heart! I look forward to that day!!!
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Lisa I love your horse and I know you had fun! YESSSSS I was getting bitchy on Tamox. I can't say I was bitchy so much as I was just a bitch. I took 37.5 mg of effexor last night and the monster inside me was gone today. I was not myself at all yesterday. I was sick today but I am hoping it was not the effexor. I have also not had one single hot flash today. I am used to the hot flashes and have learned to live with them but today I didn't have any. If the effexor helps me with the side effects of tamox I will let you know because it is certainly worth taking.
Shari, I hope you do take that ride on a horse on the beach. You have been through a lot and you deserve it!
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Hotflash ladies-I did the black cohosh and that worked for awhile. I then went back on birth control pills and that totally wiped out all the flashes. Had to give those up with the bc dx. I take 75 mg of effexor and have had 5 accupuncture treatments (2 more to go) and I now get warm flashes. So the combo has worked, but I would like to have them totally stop. I will be starting Tamoxifen soon so who knows what that will bring. More sweating? I hope not!
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Cupcake: My mother's BC was ER+. She had been treated for over 20 years for fibro breasts and had had many cysts drained over the years. Her gyno wanted her on "hormone replacement" and her surgeon said NO! Mom did the HR for a short time in her 40's (after a complete histerectomy) and then did the vaginal cream for the rest of her life. BC took her when she was 65. Her battle was 2 1/2 years of almost constant chemo. My point is, I wonder if that "Hormone Replacement" therapy did not push her cancer along. I too was "fibro boobs" and I am ER+, but I never took any hormones. I did the genetic testing and it was negative - luck of the draw. I can't help but wonder how much the hormones had to do with my mom's cancer.
BTW Coming up April 20th will be 5 years since I lost my mom. My dad is already being a bear - he does this about this time every year. My mom was my biggest fan and best friend. I miss her horribly. I have based my attitude on my diagnoses on how to HONOR her memory.
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cupcake,,,,,,,,,,,,,,,well I was er/pr negative............so from what I understand my cancer was not feeding off of estrogen. My onc just wanted me to stop taking estrogen,,,,,,,,,guess she didnt want to add anything else to the mix. I have had such horrible hot flashes,,,,,and have tried several things,,,,,,,,,that one time on the phone when I was talking with her I asked since I was er/pr negative,,,,,,,,,could I take hormones again. She said well lets try some other things,,,,,,,,,she seemed hesitant on doing the estrogen but seemed as though she wasnt throwing away the idea all together. Ive heard about Estrovera,,,,,,,,,,,,,I think thats how u spell it,,,,,,,,,its herbal stuff. So I will be chatting with her more on next Monday for my appt.
Sorry to hear about the loss of your mom lisa five years ago.,,,,,,,,,,and at such a young age. I have to tell you all,,,,,,,,,that when I was going thru chemo,,,,,,,I saw soooooooo many young gals in there. So many in their late 20's early 30's. Really sad.
Was beautiful here in So Cali today. Got some seeds the other day and I think I'm gonna start doing some planting in my garden.
Take care all
Beautiful pic Lisa.
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CUPCAKE..... yes I do have a cancer coordinator. She didn't mention anything about a chemo class that I remember, but then again, there is so much information she gave me when I was going thru surgeries, etc. I will be in touch with her. I go in on Monday for a dressing change and flush on my PICC line, so I will find out more then. Yes I do know I have to do blood tests before each chemo, they suggest I do it the day before each one. Thank you for your advice.
LISA... I love your horse too. I used to ride sometimes. I did it on the beach only once when I was a kid in Santa Barbara....... I bet your horse has been great therapy for you.
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Hello Ladies,
I had terrible hot flashes--thought I was going to spontaneously combust! I don't remember how I heard about this, but I started to take time-released Vit B and it really helped. It also seemed getting rid of a few extra pounds also helped. I should tell you that I am not peri-menopausal; I had my last period August 2007 and that is when the hot flashes started. Not sure if this will help any of you, but it works great for me.
Cheers!
Cloud
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I've just had my 2nd TCH combo (every 3 weeks). Hair fell out 15 days after 1st treatment. Cut it short and then to a buzz...but itchy scalp made me crazy. Found that Wen Tea Tree Oil Cleansing Conditioner works like a charm (by Chaz Dean..can order direct through his website in California, or through QVC). Really helps soothe the scalp and get rid of the itch.
Hope this is helpful.
Best to all........
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Thanks, Lisa, for posting that photo. Your horse is beautiful and I can't help thinking how therapeudic the riding, sun and ocean must be. I LONG for the ocean - both my husband and I are sun lovers. With the weather here being what it is (we may actually get to 50 degrees today if we're lucky), your photo was a welcome sight.
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Good Morning Everyone.
Cheryl - Thank you so much for the tips about how to put on the compression sleeve. I will try it when I put mine on in a little while. You are right, I am getting used to it rather quickly. I sometimes forget that I have it on at all. They lymph specialist told me to wear it every day until I see her in two weeks. I let myself cry it out for a day or two and today I decided to pull myself up and deal, deal, deal. There is no other option and life is too short to spend another minute upset about the inevitable.
Regarding Herceptin - It seems like the only side effect that I am having is sleepiness on the day of the infusion. I'm hoping that this becomes the norm and not the exception. As Cupcake said, this is our miracle drug and I am thankful every day that we have it. God bless the doctor that invented it and all of the women who put their lives in the hands of the experts for the trials. They cleared the path for all of us.
Sailor - Regarding eyelashes and eyebrows. Mine were fine until my last treatment and they started to thin. They are not completely out, but they are very thin. I am six weeks past my last treatment and I can see the little black dots of eyebrows starting to grow back. I also had to shave my legs for the first time in 5 months, so the hair on my legs is growing. If I could just get the hair on my head to start moving, then I would be in business.
Be careful with acupuncture near or on your affected arm. Any needle pricks can bring on lymphedema.
Lisa - Great shot of you and John. He's a cutie. I'm glad that you have decided to see a specialist for your arm. The only reason I made the first appointment was because I knew that we would be flying in an airplane for our vacation and I wanted her input on what I should do to "prevent" lymphedema. She took my baseline measurements and fitted me for a sleeve. After about a week, she called me back in and told me how to wear the sleeve. I kind of thought that maybe I was putting the cart before the horse so I just put the sleeve on a shelf in my closet. But, now I'm glad that I saw her before I started showing symptoms, because she was able to re-measure my arm and compare that with the initial measurements. Plus I already have the sleeve and know how to use it. Better to be safe than sorry, right?
I haven't taken any vitamins since before I started chemo and I asked my oncologist if I should begin a vitamin regimen. She told me not to take any vitamin supplements, except for calcium. She said that any vitamins I get should be from the food I eat. I suppose I should have asked her what her reasoning was, but I let it go and moved onto the next question. Any thoughts?
My son's 7th birthday is this week and the four of us are taking him into New York City to see "The Lion King" and out to eat at his favorite restaurant in midtown Manhattan. We used to go into the City regularly and since my diagnosis, we haven't been there much. The whole family is excited and we can't wait. My nieces just moved into an apartment and we will be stopping in to see their new place. So, off we go from the sandy beaches of Long Island to the lights and excitement of New York City. Nothing like the sites and sounds of that wonderful city to put a smile on my face.
My love to all,
Anne
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Well, after having weather in the 80s last week, they expected the biggest snow storm of the season last Thursday--my chemo day! It was my 3rd chemo and NO WAY was I going to miss it. My friend's car couldn't make it, so I drove my SUV and in 4 wheel, I still slid through one red light and then slid over 2 lanes on a hill (later learned that TV had that particular hill on the news due to the # of cars sliding on it--maybe it was me?!) sigh. But I got there!! Dr's office was open and now I'M HALF DONE with chemo! Only 3 more to go.
Next day was beautiful and sunny. But they'd given me my Neulasta shot to take home and inject the next day due to possible more snow. DD was at my house helping me houseclean on my steroid high, but hates medical stuff--she couldn't even look at my drain after surgery. So while she stood out my bdrm door, I injected myself!!! I was so proud. Did it in the stomach so it didn't even hurt. Can't tell you how proud I was of myself!
I'm set for my chemo crash week which should arrive tomorrow on schedule. My house is spic and span, due to our cleaning rage yesterday. So I won't have to lay there and stare at cobwebs! I'm ready!
Lisa, Lisa, I love the photo. Now picture us all going down to Florida (virtually, Lisa, virtually) and each of us riding a horse in the surf--wigs flying in the wind. How cool, huh? A herd of survivors, flying along the beach!
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