Taxotere, Carboplatin and Herceptin
Comments
-
Lisa1964 - I love your hair! I hope/pray that I will be will be able to go out in public without a headcovering. So nice to hear that we can expect taste and smell come back, I cannot wait for the day when things taste as they once did! IStill only drinking mild teas and water, sometimes skim milk. The smell of coffee (which I used to have two cups a day of) remains repulsive, as do many other smells/tastes. I used to love a glass of red wine...my gosh, I took one taste the other night at a dinner with a friend and it was AWFUL! How can that be? I guess Tannins are not our friends right now. I have an open invitation to go and visit my friend's horses...I think I will be doing that, just to groom and love, and get sweet muzzle kisses. I actually did a clinic for trailer loading my horses...such fun! Take time and patience the first few...one of my two that, at first, would not even step to the trailer, loaded with no trouble later on. Horses are such sensitive creatures...that's a whole different subject. I got lots of tips from Clinton Anderson (he's probably not regarded like he once was...I cannot remember the other trainer's name, but I was in love with him ;0)
AmyIsStrong ~ thank you for your kind input! I would be shocked and amazed to go with no headcover in 8-9 weeks post 12/10/09! (early February!) I get the dreaded Decadron steriod plus Kyrtil for the Taxotere (I forgot, I need to take a darned Decadron today for tomorrow's tx), but they never give me Benadryl for the Herceptin? I have never heard of the L-glutamine before?
deedee22 - horse hugs and kisses. Keep loving your horse...soft warm nuzzles!
0 -
Lisa1964... Chris Cox, how could I forget! He was just fun to look at riding the horses
I still think Clinton had a great Trailer loading method 0 -
Bold My prayers continue for your nephew. 4 weeks post H and my splitting feet are on the mend, just the splitting fingertips to deal with.
Sanaisa My taste during TCH was horribly affected. I am very attached to Chardonnay, during TCH I could not stomach the smell of it. If hubby wanted a glass, I made him sit on the opposite end of the room! Go visit yur friends horses, you will feel better fo it.
Lisa
0 -
Bold I am thinking of you and your nephew. I hope he will be just fine.
Lisa, I know well how it is to get an animal loaded not because I have horses but we used to have cows and we just wanted to put them in a weight pen and there was no way most of them wanted to go in. It was even open just bars around it to keep them contained. I guess they don't like the idea of being trapped. I have been told if you put blinders on them they go right in but not cows. I am so glad we don't have them anymore! Now horses I love but haven't been around any in a long time. A neighbor had a horse for his daughter and she was supposed to care for it but didn't. he would come to my cow pasture and beg for grain and hay. I could not refuse him but did tell the Dad to get it to someone who would take care of it since it had a cut from getting out. Some should not even have a mouse to care for. I get mad every time I think of people too lazy to care for their pets.
I hope Thanksgiving is okay for all of you. Last year I did not eat much but maybe this year I will enjoy it. My daughter is cooking and she is a great cook. she cooked at my house last year but I was still at the point even smelling it made me sick. I didn't tell her though. Just picked at the food. Now I have gained 4 lbs! I want to keep my weight off but I know with my taste buds back I will over do it. there is hope for all of you still having the bad taste. next year or maybe by Christmas.
Carolyn
0 -
I just wanted to give you a quick update.... He open his eyes yesterday and smiled at his mom and dad. This is a wonderful sign. It means he is in there!!! The rest is a wait and see thing. We are hoping that he has motor skills and no serious brain damage. He is still on a vent. I will not keep posting about this but would like those that do pray to still keep this wonderful, kind and smart young man of their list. Thank you sistahs you rock!!!!!!!
I have my mam. today at 3:00. I get one every three months on the cancer side. Is this standard for all of you? If the radiation is a threat then I am in deep do.
Yikees the Holidays are coming!!!!!!!!!
0 -
Bold, I got one mammogram 6 months after treatment and have been told to get one every 12 months now.
0 -
Bold that is a great sign. Please keep posting I hope he continues to make a recovery.
Okay question for you ladies... I would love to join the neratnib (sp) trial BUT I am on the Bio. Trial for bone density and you are not allowed to do both. On the biso. trial I am going the clodronate which means I for sure get the drug but of the other trial I have a 50/50 chance of getting the real drug. Would you continue on the for sure drug or would you risk getting the neratnib ??
Side Note: My DH thinks I am insane for even wanting to try this new trial.
0 -
Gramma, some people should not have animals to care for, much less children! As for Thanksgiving: last year I was in the middle of TCH and NOTHING tasted good or even remotely decent. This year Hubby and I are sneaking off to the Ocala National Forest with our doggies and 2 horses. We have a nice cabin rented on the edge of the forest. I will pre-prepare all the side dishes for TG and vacuum seal and freeze them. We will bake cornish game hens on sight instead of turkey. Just us and our four legged favorites.
Bold My prayers continue for your nephew., Great news that he opened his eys and new is parents!!!!
As for mammos: I had cancer on the left but elected to have both breasts removed using the "skin/nipple saving technique. I had simultaneous silicone implants. I go for my first mammo since the surgery in the morning. My surgeon and the Research Nurse for the Neratinib Study sad the same thing: With the skin sparing mastec. I still have minut amounts of breast tissue that need to be watched.
Jaimieh My hubby is not real wild about the study either, He is just exhuasted and any thing that means more doc visits or any more SE's for me is just beyond his comprehension at this time. Bless his heart, he is as tired as if her himself had had chemo.
Lisa
0 -
Gramma, some people should not have animals to care for, much less children! As for Thanksgiving: last year I was in the middle of TCH and NOTHING tasted good or even remotely decent. This year Hubby and I are sneaking off to the Ocala National Forest with our doggies and 2 horses. We have a nice cabin rented on the edge of the forest. I will pre-prepare all the side dishes for TG and vacuum seal and freeze them. We will bake cornish game hens on sight instead of turkey. Just us and our four legged favorites.
Bold My prayers continue for your nephew., Great news that he opened his eys and new is parents!!!!
As for mammos: I had cancer on the left but elected to have both breasts removed using the "skin/nipple saving technique. I had simultaneous silicone implants. I go for my first mammo since the surgery in the morning. My surgeon and the Research Nurse for the Neratinib Study sad the same thing: With the skin sparing mastec. I still have minut amounts of breast tissue that need to be watched.
Jaimieh My hubby is not real wild about the study either, He is just exhuasted and any thing that means more doc visits or any more SE's for me is just beyond his comprehension at this time. Bless his heart, he is as tired as if her himself had had chemo.
Lisa
0 -
Thanks to everyone who shared the info on the Neratinib trial. Tuesday, I spoke with the oncology nurse practitioner about the trial. She said she hadn't heard of it, but she would pass the info along to oncologist. Today I got a message from the clinic. The oncologist wasn't aware of the study but wanted to know more. I sent him the link Dasher posted.
My Herceptin is scheduled to conclude on March 2nd, barring anymore insurance blips, and I would love to immediately enroll in the study. Whether it works out for me or not, it would be nice to have our rural area represented in the study. As it stands right now, the closest trial sites are both two hours away.
Bold, thanks for the update on your nephew. Prayers and good vibes are said and sent daily in his honor.
Here's wishing us all a wonderful day.
Cheers!
Cloud
0 -
I am scheduled to finish Herceptin in April. My cancer center is not enrolled in the neratinib trial. I can go to Philly for it - about an hour away. I will be glad to do that if they will have me. I wonder if the trial will fill up by the time I am able to join it. Am going to try to call them tomorrow. The research nurse at MY onc (where they are NOT doing this trial) said to me "I think this is a very promising study - I would look into it if I were you." So that means something....
0 -
Jaimieh, my question exactly! Which study should I go after since I can only do one? My onc just told me that although the zometa trial looks like it is getting some good results, she didn't think "this study would be the pivotal trial in my treatment." She has more reservations than i have read about the bisphosphanates helping prevent recurrences beyond the bones. She thinks the neratanib study is probably much more pivotal, but then again, 50/50 odds are not the sure thing. I am going to get a 2nd opinion at UCLA for where to go next in my treatments (at her recommendation by a doctor who is part of Dr.Slamon's "team") so I will let you know what UCLA says in a few weeks.
Amyls, I doubt if the trial will be filled by spring. The study site I contacted seemed to think it would still be open even past the summer which is when I finish my herceptin. Who knows, but I guess trials don't usually fill up that fast. We all know about them because of this site, but there are lots of other bc patients who don't even know they exist.
0 -
Hi all. Sorry not to be talking about trials. My question is related directly to the TCH cocktail that's on this thread.
Background: My mum (agd 59) has just had a R breast mastec last week and lab report shows triple positive (although we're waiting for FISH to confirm HER2+). This is a 'recurrence' as she had a lumpectomy in the same breast 5 years ago, almost to the day. That was triple negative so she did the full chemo FAC and 30 days radiation. 14 nodes clear 5 years ago (no more taken out this time). All scans done to date show no mets, although bone scan o/s. Latest tumour 1.2cm, clear margins.
First oncologist recommended Femara only for 5 years as my mum said she wasn't keen on chemo. Her surgeon then recommended Herceptin for a year with no chemo on top of Femara. All research I've done seems to suggest that the advice was rubbish.
2nd onco recommended TCH (4/6 cycles chemo + H for 1 year) then 5 years Femara which seems to make more sense. However, his C was cyclophosphamide, and not carboplatin that everyone else seems to be on. Is it the same?
We're going to get some more opinions as she is pretty down about the chemo advice. My sister and I both live in London and my mum lives in Kuala Lumpur. She wasn't able to get insurance cover so will be footing the bill herself. Next year is going to be a big year for her - my sister is getting married, I'm having baby number 2, my mum was meant to submit her thesis and get her DBA and she's turning 60 - so she doesn't want chemo as it will slow down some of the plans. I guess the only way for her to come to the right decision is to get more opinions and do more research.
So much to think of. Sigh.
0 -
I am due for my 5th out of 6 tx of TCH and just had my muga scan. My ejection fraction was 69 to start now down to 59-still within a normal range. However, I have leg and ankle edema but worst of all I am quite short of breath.It just sort of popped up in the last 2 weeks. My onc just ordered a chest xray to see if I have water on the heart.. waiting for results. I know I read posts about this somewhere but can't locate them when I need them. Has anyone else experienced this and what is done for it? They put me on 20mg lasix but it did absolutely nothing. I am overweight so maybe I need 40 or more mg. Also, I fear that my sob is mets. I hate this anxiety even while on klonapin.
0 -
Joys - Sorry to hear about your mom. TCH is the standard treatment in the US for triple positive breast cancer; 4 or 6 treatments. However, if you mother is going to have to pay for it out of pocket, that could get ugly. I just pulled my old receipts and my charges were right around $10,000 (us currency) for each treatment. It sounds like your family has a really great year ahead. Good luck and kepp us posted.0
-
Joys, I am sorry about your Mom and as for the C in TCH I was offered cytoxin after I was into my tx 3 but I was afraid to start that because I thought it would make me start over. they told me it was easier on a person than Carboplatin. they are pretty much the same however in the tx as far as helping. My friend I go to church with got the Cytoxin and was not as sick as I was but then each person reacts different. My brother got the Carboplatin as I did and he did not have a good reaction to it either. I did go ahead with it but I believe it is what caused me the most problems. They are both made from mustard gas if my research is correct. I am not sure what makes them different. I wish your Mom the best but I do know chemo is very expensive. What is your options and how much is your life worth? Herceptin is a good drug with few side effects. I guess you must go with a doc that you trust. I am glad I am finished but if I have to do it again I can.
Carcharm. I hope you can get some answers but I do know that a lot of people get swelling. More lasix can be given but after a while your body can get used to it and it will not work as well. Sometimes just drinking more water helps as much to wash out your body. Have they checked your kidney function? If that is not working good then it can be a cause of swelling. I wish you the best.
Carolyn
0 -
Joy I am sorry to hear about your mum. I know that chemo is expensive. Mine was less than Lisa"s around 5000.00 dollars per treatment. But still. Tell your mom that she is going to have to think hard about throwing everything at it straight away. It is not good to take a passive approach to cancer. Obviously the chemo that she did before kept her here for all these precious years. I want her to be around to watch your children grow and to enjoy the fruits of her hard work as well. It is doable!!!!! I am 55 years old and although I whinged about it I am grateful that I am on the other side and putting myself back together again. Strong and hopeful! My thoughts and prayers are with your family.
I was VERY swollen around my 5th TCH. I too was short of breath. I think that it is just a reaction from the therapy and not congestive heart failure. Try not to worry it is common to have your symptoms. Drink a ton of water. Have some cucumbers and watermelon and coffee. Not at the same time. hehe. But mostly keep your mind from the dark side. Your going to be OK. I gained 12 pounds of water weight toward the end of chemo. It is now gone. Plus 25 pounds of bad choices. Still need to loose 20 more. But hey it all good.
Right? If there where any problems with your kidneys it would of shown in your blood work. I hope that you have a good report and you stay calm and keep moving. My nephew did not do so well yesterday. No response at all. It is so hard to see such a strong guy so critically sick.If you are interested in following his progress here is a link http://reedhaus.blogspot.com I respect that this site is for our recovery and fellowship. I could not miss the chance for all your prayers. I appreciate you all more than you will every know.
Peace and healing
0 -
carcharm, did you ask for the new muga scan because of your symtoms? I just finished my 5th TCH treatment as well, but my onc has never once mentioned re-doing the muga scan (I think mine was only 63 to begin with) I was assuming she would do one when I was done with chemo, but should I have had one in the middle? I, too, get a weird out of breath feeling, but it is usually only for a day or two, and is intermittent. It seems to happen on Day4 and/or Day5 after chemo. It is a weird feeling--I can't really tell if it is my lungs or heart or just a sensation. I've had 2 of my nurse friends listen to my heart, and they both said they can't hear any fluid so they don't think it's congestive heart failure. The feeling is almost like a slight pressure/lack of breath feeling. I don't know any better way to explain it, except it feels kind of how you feel just after you had an anxiety-producing experience where it feels like your chest is a little tight and your heart is beating fast (but I don't notice any increase in my pulse.)
0 -
weety and carcharm - The out of breath feeling can be from the TCH, dehydration or low blood counts. Just be sure to make your onc aware that you are experiencing it. Also, the MUGA should be done every 3 months while on herceptin to verify that your heart funtion level does not fall too low.
Bold - I am sorry that your nephew is not doing well. I will continue to keep him in my prayers.
Lisa
0 -
I am just bumping this up to get us back on page one.
I spent the weekend doing holiday baking and pre-preparing my Thanksgiving feast. Hubby and I have rented a cabin in the Ocala National Forest for the week. We will be taking a couple of horses with us for a relaxing time of riding and doing nothing. Dinner is made and frozen, just have to toss it in the oven on Thursday. Goodies are made for the house-sitter too!
Have a great day everyone.
0 -
Bold I am so sorry your nephew is not doing well but maybe he will in time. I will continue to keep him on my mind. My friend in Australia is having a difficult time right now. she has cancer of the throat and lungs and they say she has 3 months. I do wish I could be with her. My brother died from this too and it has almost been a year. Hard to believe.
Lisa, it sounds like you are going to have a great time. We are having it out in the country at my daughter's house. she likes to cook but I still have problems with food. I will make some things though and a birthday cake for her since her birthday is on 28th. she was born on Thanksgiving Day. I am really thankful for her! My boys too but she was my first.
As for the heart check you are doing okay in the 60s on the MUGA. My cardiologist told me you can't have a high number because your heart would explode under that much pressure. I have forgotten the numbers she told me but I think anywhere from 70 to 50 is okay. You might check on that and be sure and talk to you onc. they have so many patients they have a hard time keeping up with everything. It is our responsibility to keep up with our own health and remind them. Swelling is a big problem with chemo. I have the heart palpitations when my red blood count is low.
Carolyn
0 -
Hi all, I posted this under the chemotherapy forum, but I'm having problems getting responses. I'll try here and hopefully someone can help.
I'm getting TCH (I am finishing up treatment #5 this Friday.) I am not getting it every 3 weeks like it seems everyone else on this board is, though. My onc gives divides it into "half-dosages" and gives me half the taxotere on week 1, half on week 2 (and on week 3 I just get my weekly Herceptin, but no chemo drugs.) At first, I was okay with this regimen. My onc explained that it is the amount of taxotere that gets into your system that matters, not how much. She said the side effects are more tolerable with the half-doses because your body only has to deal with a smaller amount of "poison" but more often. She said the every 3 week regimen is cheaper (less trips to the chemo room) and more convenient for people and that's why that is usually considered the "standard" treatment, but my way would be just as effective.
Okay, so now I'm almost done with my chemo and getting really nervous about the "half-doses." Here's how I am thinking now: If I drink 4 glasses of wine in one evening, I'll get drunk. But if I have 2 glasses tonight, and 2 next week, not enough will get into my system to make me notice the effects of the alcohol. Is it the same with the chemo? If I only get half the taxotere each week, won't my body be getting a watered down dose? OOOOhhh, I've got myself in a nervous frenzy over this now. There was a study that someone posted on my old thread that found weekly treatments were somewhat superior, but that was for Taxol, not taxotere. Does anyone know if it would be the same/similar? Is anyone else out there getting the 1/2 treatments like me? I think I'm the only one, and that alone makes me uncomfortable!
0 -
Weety - I find your question very interesting. I showed your post to my husband and he too finds it interersting.
1. Does your doc have documented data to support her protocal
2. If data exists to support the "abnormal" protocal, were you given a copy?
3. I would be asking some very serious and pointed questions.
Lisa
0 -
I have not heard of it done like that broken up into different doses. That is interesting why she wants you to do it that way and not the every 3 week regimen.
0 -
Hi there Ladies!
Seems everybody's doing great! The weather turned unexpectedly cold here (below 10C) and was rather busy thus.
Had my 13th H shot last Friday and talked to onco about neratinib trial. She wasn't even aware!!! Still, she agreed to let me take a MRI on my brain to check out the headaches lately. Will enrol into trial and start once the MRI is done. I might just skip H number 16-18 and start the trial in January. Anu SEs on our hair?
Joys - greetings from a fellow Malaysian. If you like, you could ask your mum to get on this board so she could chat and share dierctly with other sisters on TCH here. This a swell board, not just swell but a lifeline to people like me. I happen to be based in HK, but the medical info and protocols still lags behind the US. I wouldn't know about the nera trial if I did not read Lisa's post, for example.
If your mum could get on the nera trial, ti would be great since that would help her save some money. I have a friend on the same markers who did nto do TCH. But she is stage 4 so they put her just on neratinib for a year. But the nera could not help her liver. Still the big tumour almost disappeared after the 14 month trial.
Lisa: Great hairdo!! Mine looks like doctor's hair on the frontpage of Breastcancer-org. Very flat - must be the H. But I am not bothered.
Where is Mommy Cupcake these days? Hope she is fine.
Cheers!
Ipohgirl
0 -
We just got my mum's FISH back yesterday which shows she is HER2 negative. This is so confusing, seeing as her lab report showed her to be strong positive in all tumours (3+++). How is this possible, although I guess it's good news?
Mum still resisting idea of chemo, which the 3rd onco recommends as 4 cycles of TC + Femara for min 5 years. 4th onco tomorrow.
0 -
Weety911, I have never heard of the T broken up like that but I do know the poison stays in your body longer than the alcohol does. Your liver filters both and maybe they figure this is easier on a persons liver. Taxol & Taxotere are almost the same drug. the chemo was in my body for a while after I quit taking it because I could smell it when I went to pee. Has it made your hair less likely to fall out? When do you get your C part? do you get it in one dose or with the T? I think I would try to go to the page that has "Ask an Expert" on this site and see if you can get some answers. I am glad you are getting close to the finish line though. Have you talked to any other of this onc patients in the chemo room? I usually know which one has which doc when I was taking chemo but we were all out in the same big room not separate rooms like some do.
I think once we are almost through with chemo we are to the point we are asking more questions and over the shock of knowing we have/had cancer by then.I know I was like that. At first I was just trying to get through the tx and then afterward I am like how do I know this worked? Others have said the same. Keep asking questions until you feel satisfied. I am not an expert but Bluedasher does a lot of research. Maybe she can weight in on this subject. Blue are you out there?
Carolyn
0 -
Big shocker yesterday. I was carbon copied a letter from Medicare to Moffitt Cancer Center saying that they have denied my Herceptin only treatment! I started H only in August and apparently I was denied at that time and Moffitt put in an appeal, but it was denied again in October. This letter was the first time I've heard of a problem with Medicare refusing payments to Moffitt.
I'm in a panic here. My protocol was established last March at diagnosis (TCH for 6 treatments followed by the balance of a year on H only). How can Medicare deny coverage in the middle of treatments? I hope this is just a paperwork screw up like something having been mis-coded.
I've been in touch with my oncologist and my next H treatment is next Tuesday (Dec 1). I hope to have some resolution by then.
0 -
Darn it, I just lost my post, so I'll have to start all over!
Lisa, ccbaby and grandma23, thanks for all of your replies. I have gotten myself so worked up over this now. I guess at the beginning I just accepted everything my onc said and just wanted to get started, but now that I'm nearing the end, I'm getting nervous that I didn't do enough to keep this cancer from coming back! Here's how my chemo goes:
Week 1: taxotere (1/2), carboplatin (full amount), herceptin (1/3)
Week 2: taxotere (1/2), No carboplatin, herceptin (1/3)
Week 3: herceptin only (1/3)
So it's TCH, then TH, and then just H the last week. Like I mentioned above, someone posted a study that actually showed TCH weekly was slightly superior than the 3 week cycle, but the "T" was taxol, not taxotere. I will after edit my post after I hit submit in order to attach the link to that study because I don't want to lose all this typing for the 2nd time. As for the side effects, I still lost my hair, but it was a much more gradual thinning, I think. I didn't lose it all at once. I had enough still up until maybe the end of treatment #3 that I was still wearing the half-scarf headbands to hide the enlarging part at the top of my head, but the sides held on pretty good. I feel my worst after the first week (I think it's the carboplatin that makes me more nauseous) and of course, after the herceptin only week, I feel almost normal.
There is an official name for this kind of chemo regimen--it's called metronomic chemo. I found that out from another thread on this site. Let me know if anyone finds out more.
Swampy, Holy moly on the Herceptin denial. You would have thought the herceptin only portion of your treatments would have been approved at the beginning seeing that herceptin is a part of the "TCH" treatments from the start! Maybe I could have seen it more if it had been the AC and then herceptin route. Hopefully, like you said, it will get resolved by your Dec appt.
0 -
