Taxotere, Carboplatin and Herceptin
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Dear Vangoghpro,
Sorry for the late reply. Was really busy.
No, herceptin does not cause brain mets. H does not permeate the blood brain barrier, so does not prevent brain mets which is common for her 2. Neratinib does, as does lapatinib(tykerb) but they give tykerb only for stage 4(mets) right now. It's the same situation that Herceptin went thru before FDA approved it. SEs wise, neratinib beats both H and tykerb since diarhheaa seems to be the main issue. Being and oral tablet, nera will compete with H once the trial results come in. i heard it is going to be more expensive than tykerb.
I have a choice of joining right away or completing the last six courses. What do you all think?
Lisa,
What scans did they do for you? Am planning the one year scans/tests right now. If I join the trial and they do it as a routine, I do not want to be exposed more than neccessary to the radation.
s
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I guess I blew it because I never took responsibility for when my echocardiograms were due. I should have had an echocardiogram in September and now my Herceptin infusion for Wednesday has been postponed until the results come in from last Friday's echocardiogram. I am in agreement to wait until we get the results, but I feel disgruntled that this happened. I am also a little worried because I changed my insurance coverage in October and my treatment has been put on hold pending a medical review. I ithink I can push for treatment if I agree to a retro-review; however, I have a few questions I'd like your help with:
Is there a window of time that must be maintained between Herceptin infusions?
Is my thinking correct to move forward, without a completed medical review, if the echo comes back okay?
How do you ladies keep track of when your tests are due?
It seems that many of us are having a share of frustrations, disappointments, and delays. I am saddened by this but absolutely amazed at the positive attitude and good humor that remains in spite of it all. I am wishing us all the best.
Cheers!
Cloud
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Cloud, I do not keep track of my tests. My onc does that but has not done a great job either. I do know when I need my port flushed because it tells me. It is uncomfortable. anyway I only got 2 MUGAs and then the onc got nervous and wanted me to see a cardio but I had a complete workup for that and then 3 months later had chest and back pain like I have never felt before so went to emergency and they did every test they could do and said it was a disc in my back causing it. I don't know but anyway they looked me over pretty good because they were afraid I had a blood clot. I am finished with Herceptin so I don't think I will have anymore MUGAs. the test they just did and I am supposed to find out about today was because a new rad.onc thinks my neck looks swollen but it has been that way every since I had rad. I don't think they will find anything wrong. I also go for my blood test every 3 weeks because I am still losing HG someway. I wish I knew what to do to help it besides eat well but the medical onc won't let me take supplements.
You might try keeping a book to note everything you have. I keep a record on my computer so I can deduct some of it on taxes like mileage. Medical bills I paid out of pocket etc. I can at least track a lot of this that way.
Carolyn
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Morning Everyone, Wow! The thread has been busy so I am just trying to catch up here. Thanks to everyone who complimented me on the picture. I had a wonderful time on my trip. and Yes I have hair. It has a life of it's own, but it is hair.
Jaimie The drains are not that bad, they will be out before you know it. It is worth it to have your foobies.
Ipoh I find out in the morning eactly what bloodwork and scans I will be getting. I know that it involves routine MUGA's and 6 month mammo's. I questioned the mammo's because of my bi-lateral mast. but they said since I had the nipple preserving mast. their is still a tiny bit of breat tissue that has to be monitored. I will let you know what I find out in the AM.
Cloud They generally want the herceptin treatments 3 weeks apart but a few days in either direction is OK. I would ask the onc if it is gonna be more than 4 weeks. I know Blue got her last ones just 2 weeks apart to accomodate a trip overseas.
CCbaby - I will PM you. Facebook away!
Lisa
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Cloud, my Herceptin infusions will be three and a half weeks apart in November because of Thanksgiving. My onc said a few days longer wouldn't matter. Hope he's right!
Good luck getting the insurance and treatment problems straightened out.
Becky
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I have just completed my first chemo round of taxotere,herceptin and carboplatin, and will do 6 rounds, every 3 weeks, then radiation. It has helped to read past entries of those who have "been there". Any suggestions of what to drink or eat that doesn't taste yucky? Yep, even water is not pleasant, but am forcing it down.
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akhoover What tastes OK seems to differ from person to person. Unfortunately for my waiste-line MacDonalds Sausage Egg Biscuits tasted good. I normally would not go near a McD's, but it worked at the time. I also found out that the more processed sugar an item contained the worse it tasted. Good luck and remember the TCH gals are here for you any time.
Lisa
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Herceptin persists in your body pretty well, but I don't know how long a gap you can have. I have seen posts from women who had a bad MUGA result, took a break from Herceptin and then resumed it when their MUGA improved. This isn't ideal but sometimes there isn't any choice. Also, in Europe they often do Herceptin for only 18 weeks and it seems to be effective so you have probably gotten a lot of the benefit of Herceptin already.
I never had to keep track of when my MUGAs were due. My onc would order the MUGA and then nuclear medicine would call me to schedule it and they had the time range from my onc.
Ipo, perhaps it is a difference between lumpectomy and mastectomy partly, but I haven't seen my surgeon since before I started chemo. He was only involved for surgery follow-up while I was healing and then he turned me over to the medical onc. I guess for anyone with reconstruction the surgeon stays involved longer.
My follow up with my onc will be to see her every 3 months at first and then once every 6 months. I had a mammogram after 6 months and future ones will be every 12 months. I'm getting blood tests about once every 3 months for now - my creatinine is still elevated and I'm still slightly anemic. I'm not sure how often I'll get blood tests once my levels return to normal.
I think follow-up varies a lot from onc to onc. Some do more scans and some think that just leads to false positives and unnecessary anxiety. It may also vary depending on your stage when diagnosed.
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Hey Ladies!
I heard something that bothered me in my support group last week. one lady who is a year post tx was told by her oncologist that any symptoms of Neuropathy that you have after 3 month will remain with you. Have any of you experianced this? I am lucky and only have mild tinglling and numbness in my legs and fingers, but it still is upsetting to think that i am stuck with it forever! I am now 13 weeks post chemo.
I also still have watering eyes. seems to be the one SE that is going to drive me to drink!
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Unfortunately, I didn't note the date, but I think it took around 3 months for my fingertip tingling neuropathy to go away. I'd gotten quite use to it and wasn't really paying attention or thinking about it and then one day I read someone's post or the nurse asked me and I noticed that it was better.
I think that some have said that they get watering eyes on Herceptin.
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Trish, for me personally, the nueropathy was caused by the herceptin. I got my last herceptin just over 3 week ago and alrerady the nueropathy has eased. It still hurts, but nothing like 2 weeks ago. Make a log of your treatments vs. your symptoms. That way you will have a more accurate idea of what is causing your symtoms more specifically. Please keep us posted.
Can ya'll stand another camping picture? Me and my boy Johnnie on the left and my greatest girlfreind Heather on the right,
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Lisa - your photos always make me so happy. You look so happy,full of life and beautiful on your horse.
Amy
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Akhoover.....I think it varies from person to person. Just eat what tastes good to you and make sure you eat a lot of protein to keep those blood counts up! And yes, drink lots of water, water and more WATER!! It helps SO much with side effects and keeps your vitals up.
Lisa...Great pic!!!
Trish...My WBC counts are still low and the NP told me that it takes 6 months for everything to get better after chemo, so hopefully your neuropathy will get better then.
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Welcome, akhoover, this is a wonderful thread with lots of supportive women. They can answer just about any question and are always here for support. I had my last TCH Sept 30th--feels so good to be 6 weeks PFC! I'm doing Herceptin every three weeks until next summer and just had rads #7 today. Try Gatorade to drink. I was hooked on cantaloupe, scrambled eggs and yogurt. I think it's different for everyone. Just try to stay hydrated and good luck!
Becky
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Chicken soup worked for me during chemo low points.
I couldn't eat beans, lentils or anything with the tiniest bit of peppery heat.
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Okay I was the wierdo.... I ate tons of greek salad and just salad in general during chemo. It was crazy how I would crave greek salad. Drink tons and tons of water. If you think that you have drank enough grab another glass.
Lisa~ Your picture looks awesome and makes me want to go for a ride again.. Maybe once I finally heal. I got my drains pulled last Friday but in January I will be getting 4-6 at my next surgery
BUT I will do what I have to do. I do miss riding 0 -
AKHoover, Welcome but then I am sorry we have to meet like this. Water did not taste good to me and I love our well water. It is however very essential. I got dehydrated a couple of times and believe me you do not want to do that. You can get other kinds of liquid too but get that water down. Straight water iced or not. I got to where I could not drink ice water but I had always loved that. soup sometimes is good but then like they say it is different for everyone. I drank so much of that Boost and Ensure I never want to see another bottle of it again. don't eat anything you really love because you may not love it afterward. We all get different side effects too. I threw up a lot and had diarrhea others had the opposite se. I say eat anything you can get down. I lost some weight then and now I am trying to keep it off. My friend I go to church with took chemo the same time I did gained a lot of weight. It is the difference in meds and how our bodies react to the meds I guess. I wish you few SE and hope your tx go by fast for you. Everyone here is so helpful so ask if you have any questions.
Carolyn
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akhoover: I was craving BLT's and egg salad after chemo and drank lots of water. I feel like my body wanted protein! I was one that gained over 20lbs on chemo and let me tell you that I am very upset over this, no one ever told me that gaining weight could happen. I was thinking I would be losing weight since it had always seemed that people who had cancer and went through chemo lost weight. Not Me!!! Really struggling with this weight now so just want you to be aware of this possibility. I was not sick to my stomach but did have nausea and lots of heartburn!! You will get through this, just have to take one day at a time!!
Lisa: I love your picture and you are looking great. Would never guess you have been through what you were! Way to go!!!
We will all be on the other side of this one day soon!!!
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I was just like Gramma23..I could not drink iced cold water...something about that cold water gave me major heartburn! Actually, a lot of the food gave me heartburn too only about the first 4 days after treatment. I haven't had it anymore since I have been done.
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Hi there, just made a discovery yesterday that if I pinch my nose while I drink the water thru a straw, I can get it down. But it has been the nastiest, belch producing drink since starting these treatments. Yep...good ole water! and yes we all really neeeeeed it to flush out the kidneys. Thanks for those horse pictures! Beautiful! and your smile is contagious. I'm feeling happier already. think I'll go find some sunshine and my dog. arby
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Ladies I hope your are all coming along better and better the truth when I say my prayers every night you are all in them. When I did chemo a year ago I would put lemon flavoring or squeeze a lemon into my water for some reason lemon helped me allot get water down that was the only way I could get liquid down and fortunately I never liked sweets during or now after chemo so that is a great thing green tea helps me now also. I cannot and could not drink coffee the caffeine upset my stomach when on chemo and still now after I use to love coffee.
Luck to all of you
Maura
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AK HOOVER- WELCOME! you are in gooooood company here! I was like many of you and water was just gross to me! Tasted like i was drinking out of a dirty water fountian! I found the only way i could drink was to add lime to my water. It still wasnt great but it was drinkable.i was like GRAMMA and got dehydrated one time and that was NOT FUN!!! So after that lesson was learned i forced water down my throat.
CHRISTY and LISA thanks for the tips on the nueropathy. I didnt even think abou thte Hercepton being a factor, good to know. Like I said, it isn't horrible or painful, just annoying. I can now pick up change off the floor but the tips of my fingers still tingle.
JAMIE- I craved and ate salads too!!! ha ha ,i think for me it was the tangy taste of salad dressings. I had such a lack of taste that i would eat things that were strong tasting jsut to taste them! It was salads, sweet potato fries from Trader joes ( yum!) and really sweet cereal.
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Trish~ I was not allowed to put salt in food since my taste buds where off I would make things too salty, hot or peppery without even knowing it. I have never tried sweet potato fries but they sound really good.
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A lot of things that alter your taste is the steroids. for some it makes them eat more and others like me I eat less and my swelling from arthritis goes down. I live on steroids but maybe that is why I don't gain from them.Predisone can make a person like hot peppers. It is the after effects that hurt.First hand experience! I take a different kind for arthritis but it is still steroids. The TC did hurt my stomach and I took a couple of things for it prescribed by doctor. Pepcid and Protonix and I still take Protonix on occasion.
My friend who had small bowel cancer got his chemo from the veterans and they did not tell him to drink the water and finally he went to MD Anderson and found out one of his kidneys was damaged but they got him better after the veterans hospital told him he had 3 mo to live. That is one reason I say drink water or some kind of liquids. I used to drink organic lemon tea with peppermint candy in it. I was so cold from lack of red blood cells I needed something hot. I still like that too but then I am still anemic. I could not taste salty but boy did I like sweets. Still battling the sweet tooth.
Have a good day everyone.
Carolyn
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Did anyone have abdominal swelling once they were done with chemo? For the past few days, everytime I eat my stomach swells up so much that I look 6 mos pregnant. I hate it! It's so uncomfortable and even my old fat jeans don't fit. I've gained 5lbs in the past week and it seems like I'm never full even after I've eaten a complete meal. My intestines feel really irritated but I'm regular if you know what I mean! I get my first herceptin only treatment Monday so I'll ask about it then, just thought I'd see if anyone experienced the same thing and how long it lasted.
Thanks!
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I did not have that problem but if you have a swelling like that you really need to talk to your doc about it. Mine is always feeling of my stomach and lower belly when he does an exam. I have not had my ovaries or other parts for over 30 yrs but I know he does not remember that. I guess he is just checking for lumps or something. Have you had your ovaries out? bloating and swelling is a common symptom of ovarian cancer but then it is for a lot of other things. Just play it safe! Ask and don't let it go on. A young woman that went to school where my grandson went had ovarian cancer at age 17. Urinary tract infections is another symptom. Gas is also another reason but if everything seems to be working right it is time for more investigation. Best of luck! Probiotics may be needed to get the good bacteria going.
Carolyn
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Thanks gramma 23 - I definitely won't let it go without asking my doc cause it's driving me nuts! I'm more uncomfortable with this than I was throughout chemo, seriously! I started probiotics after they gave me antibiotics when I was in the hospital with a nuetropenic fever, but it seems like that's when the bloating started so I stopped the probiotics to see if it would stop and it hasn't. I've also been on glutamine throughout chemo and it really helped with the intestinal issues but it doesn't seem to be helping now. Don't know what's going on, but thanks for your advice. Hopefully doc will have some answers tomorrow!
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Lisa1964 I love your photos. I have a horse and ride trails, team pen, and ride on a drill team and can't wait till I'm well enough to get back at it. Just had my first TCH treatment Nov. 12. My oncologist said no riding during chemo because of risk of injury, and that my be the toughest part of this whole challenge.0
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deedee - Let me be very blunt - your Doctor is full of shit! My doctor encouraged me to ride as long as I did not go out and be crazy. You will benifit so much from riding. Physically and mentally. Riding helped keep some of the muscle atrophy at bay and it kept my mind focused. I CANNOT imagine going thru 6 TCH treatments without riding my horse. Sweetheart, you are starting down a very rough but very necessary path. Hold onto your passions and embrace them. Do all you can do to keep your life normal; you will feel so much better and come out the other end better off.
I had my TCH every 3 weeks on Monday. The first 12 days, I was toast. But on the second Friday after every tx, I hooked up my trailer, loaded my horse and hit the trail. Was it easy? Hell No, Was I exhausted at the end of the day? Double Hell Yes. Was it worth every ache and Pain? 100% Yes, Yes, Yes! Cancer and chemo were not beating me and not stopping me! I was in control.
Dee Dee , get on that horse!
I care, PM me if you need to.
With love, Lisa
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deedee - don't listen to your doctor!! I had my first chemo on a Monday and on Wednesday I was riding my horse! Thursday and Friday were awful but that is when the side effects hit me. I have been riding all thru chemo (my last is Nov 22-- TCH) and when I'm too tired I still go see my horse - just to groom him, sit in a chair next to him or give him a bath. I have also been riding bareback because that's easier - no saddle to lift (i'm a western rider). I DON'T FEEL LIKE I HAVE CANCER when I am with my horse doing horse things.
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