Taxotere, Carboplatin and Herceptin
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enjoylife The study I am participating in is for a drug called neratinib. It is for HER2+ patients. The researchers are hoping it will stop a reoccurance of HER+ BC in the liver and brain. It is a double blind study; some will get the drug and some will get a placebo and I won't know which I got until the end of the study. There is on thread on this board and most know they have the real deal because of bad diarreah (i will never learn how to spell that word). I go in this morning to get my bottle of "goodies" and get started.
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Lisa, I wish your luck and I hope you get the real stuff but not the diarrhea! I had that the entire time I was on TC and some of the H. The only place I have heard of here that is having it so far is in Tulsa and that is a 21/2 hr trip just on the toll road and then I am not sure where the place is in Tulsa so it could be another 25 miles from there. I would do it if it was here but then I may not be a good candidate since I am still having blood problems. I go for my blood test today and to see the onc. I also have a UTI so I am hoping I can get some med for that too. I have had problems for over a week now but didn't want to go to another doc for that when my onc visit was coming up. I have been taking AZO for the pain and it helps some. I don't feel like I am peeing razor blades at least but now I have to let my urine clear for the specimen this morning. there will be some pain besides my back and sides.
I also need to get my mamo for the one side. I dread that because it hurts me so bad. I know most don't have that much problems but with Fibromyalgia even a slight touch makes me have tears. I can do it though! I have to do it!
have a good day everyone.
Carolyn
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Did radiation Monday afternoon then drove to Tampa and spent the night with my sister. Scheduled for Herceptin only Tuesday AM, but when I arrived they told me no treatment, wait to see the nurse PA. I thought it was because of the Medicare rejection and for the first time I broke down and cried (tired, cranky and frustrated!). Found out that the H cancelation was because my last MUGA was low. My last one was done October 28 and they are just now (a month later) telling me it's too low???? Was able to get an appointment and had a MUGA scan at 3:30, but had to cancel Tuesday's radiation and spend the night to wait for results this morning. Okay to do the Herceptin at 11:00. then dash back to Sebring for radiation this afternoon. I feel like the car is growing to my butt and back.
The Medicare denial of Herceptin seems to be some kind of paperwork glitch. Moffitt is working on it but the wheels of government grind slowly. They should get an answer back "sometime in the next couple months"! Sorry, but if this is any indication of how government run health care is gonna be, I don't want any part of it. My PA says she called the Medicare office in Jacksonville and is dealing with a 24 year old bureaucrat who is new to the job. Arrrrgh.
Radiation is moving right along. I'm starting to get real tan and itchy, but so far no blisters or peeling.
Hugs to all my sisters.
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gramma23 If you do not get some relief from the UTI, please go see a bladder/kidney specialist. I used to suffer from those horribly and it is NOT fun. The urologist can pinpoint the problem and get it handled.
swampy I have a close frind that goes to Moffit for colon cancer and I know thru her that things to do not move fast in that place. Just remember that you are in good hands, even if those hands are on the slow side. God Bless you.
I started the nerabtinib today and so far, no SE's. I really hope I got the real thing and not the placebo.
Lisa
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gramma23 If you do not get some relief from the UTI, please go see a bladder/kidney specialist. I used to suffer from those horribly and it is NOT fun. The urologist can pinpoint the problem and get it handled.
swampy I have a close frind that goes to Moffit for colon cancer and I know thru her that things to do not move fast in that place. Just remember that you are in good hands, even if those hands are on the slow side. God Bless you.
I started the nerabtinib today and so far, no SE's. I really hope I got the real thing and not the placebo.
Lisa
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gramma23 If you do not get some relief from the UTI, please go see a bladder/kidney specialist. I used to suffer from those horribly and it is NOT fun. The urologist can pinpoint the problem and get it handled.
swampy I have a close frind that goes to Moffit for colon cancer and I know thru her that things to do not move fast in that place. Just remember that you are in good hands, even if those hands are on the slow side. God Bless you.
I started the nerabtinib today and so far, no SE's. I really hope I got the real thing and not the placebo.
Lisa
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Here's wishing Gramma, Swampy, and Lisa and the rest of us all the best!
Cheers!
Cloud
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I finished my treatments of the three meds you mentioned in November. Actually, the chemo was finished in Feb., but the Herceptin was was continuted until this November. I lost all my hair, it was thick and came out in handfulls, so I shaved it off. I couldn't stand to wear wigs, so I just wore scarves or bennies. I never had any other side effects. Never. If you can have that combo, it seems to be pretty gentle, at least not as bad a some. Now, I am feeling worse than I felt with my treatments. I'm on Arimidex and from what I read it causes some junk. Who knows, as soon as you think you've got your symptoms figured out, you find out you're all wet.! So maybe just don't try to figure out anything, huh? I'm scheduled for my implant surgery the 16 of this month, but if I don't feel better, I'm not sure I can have it done. Enougn complaining. Good luck to you. Norma
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nlortiz, I am so sorry you are having problems with Arimidex. I have a friend I go to church with and she is taking that and has had some problems too. she got through chemo with a few SE but nothing like I had and not this stuff is making her feel so bad. I hope you get your implant done. I am glad you came here to join our little group and we will be a good support for you.
Thanks Lisafor your input. I have had this problem for many years but I have not gotten any help. It does seem if I have more acid in my system I get less infections but I can't eat acidty foods or drinks because of my stomach. I had a urologist give me a pill that made it dissolve after it got past my stomach and it did help but I quit taking it after a while and now with all the chemo it has started again. My hg was down to 10 yesterday and it had been 10.6, 3 weeks ago and I got a shot then and it is still going down. My husband thinks it is because of the UTI but I want my blood to start making on it's own. I wonder if they will ever find something to help besides the Procrit?I want to know why my bones are not making this and I am scheduled for my one sided mamo the 16th I dread that so much but I will do it because I need to. I also found out I will have to keep my port indefinitely. He said because I had such a large tumor and the lymph nodes affected and it grew so fast. I will not complain because I know this thing was not there the last mammogram and even the month before I found it it was not because I am diligent to check my breast for lumps. We did get some good news this week. My husband won a 42 inch flat screen TV. Now we are waiting on a strong grandson to help us put it up. I could have gone the rest of my life without it but he won it so we have it now. I think my hubby will enjoy it though.
Swampy,I can imagine your frustration with all this. I get tired of just going down to the city and also the insurance company messing up. I can not imagine all your traveling and problems. I will be thinking of you. I hope things get straighten out soon and I am glad your MUGA was good. Also glad your radiation is going okay. I hated that worse than anything. I would have rather taken 3 more TCHs than the radiation but I am through it and healed so I guess I am glad I did it. Not really but can't go back now. hang in there girl! Next year this will just be a bad memory.
Carolyn
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Dear Sisters!
Wish all of you a belated happy Thanksgiving. Was pretty busy trying to book tickets for Christmas hols.
Dear Lisa,
Thanks you for the kind words. It brought tears to my eyes.....
Hope you get the real N. You are in my thoughts. In any case, the N doc in HIK said if there was a recurrence and we are on placebo, Wyeth would be obligated to give it to us. So, it is a winwin situation. My friend who was on N (Stage 4) said the SEs are nothing compared to chemo. Only thing is diarheaa which is controllable. On teh plus side, she lost weight - goodie....
Swampy,
I'm so sorry to hear of your troubles. Keep persistiing and don't give up. There was plenty of trouble with my insurance at first, but it worked out in the end and I was vilified.
To Newbies,
Hang in there and chin up. You can all do it.
Many Hugs,
Ipohgirl
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Update on the drug study - Yes, I got the real deal, not the placebo, and the drug is at war with my already messed up digestive system. Felt sick all day yesterday, started vomiting at 9 last night, then the dreaded diarreah kicked in. It was so bad I made a bed on the bathroom floor. I have been awake all night. I think my longest nap was 45 minutes. It is going to take some practice to balance this with my chronic constipation meds. I obviously won't be needing those meds now, but I am terrified to take immodium as that is so far removed from ANYTHING i have ever taken in my life.
On the upsdie, I have lost 4 pounds in 12 hours!
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Oh, Lisa!!! Poor baby. Sleeping on the bathroom floor. You get a medal for bravery! Take the Immodium. It is pretty benign stuff and is a drug that has been around for years. Keep your fluid levels UP. There is another drug that is often given to Irritable bowel syndrom patients that is supposed to be good for diarreah. I can't remember the name, but it is a prescription in powder form that you mix with water or juice. Ask your doc about it if the immodium doesn't work.
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When I had the abdominal spasms during chemo, they prescribed a pill called "Bentyl." I tried a lot of other things before I got it, but it REALLY WORKED and fast! Wonder if it would help.
I am going to be meeting with the trial coordinator in a month or two in Philly. I am hoping to start the trial in the month or two after Herceptin is done (which should be April). Good luck to everyone on it!
You know what I wish, though - I wish that EVERYONE in the trial could get the drug and that other women who aren't interested in it could be counted as the ones who are in the placebo group. I hate that HALF the women who WANT the drug are going to get the placebo. I hope I get the real drug!
Wishing all a good weekend.
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I have not had a day like this since chemo. I think is is finally under control.
For anyone wanting to start the trial, arrange the start date so you have several days of free time to get adjusted.
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Lisa, I'm glad that you are feeling better. Great news about getting the "real deal." I hope this is the last bout of diarrhea for at least the next 12 months.
I went for my follow-up on my annual mammogram today. The doc says that I have a cluster of calcification that need to be biopsied. He says I have more calcification today than a few weeks ago. He says that calcification represents dead cells. The question is whether the dead cells are from rapidly reproducing cells that are dying off because they exhausted the blood supply, or are the cells dying off as a result of inflammation.
Hmm, my boob was squished and it hurt for days after the mammogram, wonder if that had anything to do with it. Today I was squished more than last time; I wonder how much calcification I will have next week! He assured me that I would not have to have anymore chemo, but I might need more radiation. The biopsy is scheduled for next Thursday.
I have my Herceptin on Tuesday and will speak to the oncology team about this. I have also scheduled an appointment with my breast surgeon for the same afternoon. I am not ready for another biopsy and I will never be ready for more radiation.
I am trying to stay cool, calm, and collected, but my anxiety is escalating. I started to do some research on calcification after a lumpectomy and radiation, and, well, any statement of recurrence seemed to jump off the screen and take on the form of a scary, darkly colored, monster reaching out to engulf me. YIKES!!!!!
Oh geeze, I feel so much better having just put all that into words. Thanks ladies, as always, for being here to support us all through our fears and tears. Now I think I'll go spend some time on the treadmill to physically remind myself of the stamina that I possess.
Cheers to us all!
Cloud
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Cloud, I hope this is nothing but better to find it now than wait until it spreads. I know you can do this and I understand you are not crazy about radiation. I think I would rather have chemo myself. I go for my mamo this month and I have a lump but it has been there for a while now and had MRI and Mamo and they all call it a fatty mass. My whole body is a fatty mass but I wish they would biopsy it and then I would be sure about it. Every lump bump etc is scary these days.
Where is Alaina? We have not heard from her since Halloween and her cute costume. I hope everything is doing good for her. Too good to bother with the chemo board maybe. Maybe a guy?
I have to go to work this morning so better get ready. I am never ready mentally. I need a job I love going to but my hubby says I have the soon to be retired blues.
Carolyn
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Lisa my heart goes out to you since this is what I had with chemo. Take Immodium. It works. I have that in my purse all the time but luckily I have not had to use it since Herceptin. Before cancer I had irritable bowel with diarrhea. Stay hydrated! Remember the rules of drink water then drink some more. With the UTI I have been hitting the water again and it does help the pain some.
Carolyn
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Cloud- I am sure the calcifications is what caused the extreme pain in the mammo. You are in my prayers. Please post as soon as you see the doc. Good for you for exercising! Can you send some of the motivation my way!?
Have a great day everyone.
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Lisa and Cloud,
So sorry to hear of the new setbacks. Hang in there.
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Hi, I am starting chemo on 12/10, so checking in here. I don't think I am getting herceptin because my cancer was small and caught early, but am getting TC. I know there are several trials going on of getting the "weekly" taxotere for 12 weeks, then 1 year of the herceptin. I know because my onc tried to get me in them, but because I had breast cancer before in 2001 (even though that was different primary - it was er/r+ and her2-).
Think of it this way.....getting larger dose every 3 weeks allows it to be all the way thru your system by the next dose.....I look at the weekly at keeping the levels more even? Also, side effects are not NEAR as bad, Weekly or every 3 weeks....still sucks! But, we do what we have to do. Good luck to all of us!!!!
Ginnie
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Ginnie,I hope you can get Herceptin. This is the one med that works on HER2+.
I also was wondering if you were anemic a lot after your first cancer. I read that women that had anemia after chemo &/or radiation are 3 times more likely to have a reoccurrence. Sorry you have to be here but this a good group of friends here and I think you will fit in great. keep in touch!
Cloud I need some motivation too! I worked today and I thought I was going to die and I was so dizzy from low hg. I had to bend over a lot and then run around to run work and also wait on customers. I worked with a young man that could do nothing but watch movies with the cop. I wanted to strangle him. I did get cranky! I understand cranky is another symptom of low hg. Maybe I can blame it on that anyway.
Carolyn
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gramma23 - thanks for the good words! I think I kinds stayed "borderline" anemic for a long time, but it was never enough to medicate. What is so strange is my 1st cancer was her2 neg and both my sisters cancer and my new one were both her2 +++
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Ginna, have you had the BRACA testing? That will show the genetics (if there are any) of your testing. My mom died from BC, but my BRACA showed no genetic link. Some of this crap is inherited, some is environmentally triggered and some is just luck of the draw.
Lisa
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Lisa,
My BRCA test was negative, so at least THAT was good news for my daughter and my sisters girls...
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Ladies - see my avatar at left for my newest hair update. Been PFC since 7/30. It is coming in pretty thick. NOTE that I have colored it - it came in ALL GRAY! It is a lot more fun watching it come in than watching it fall out! My head still gets cold though.
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Amy You look wonderful! I just updated my avatar today too, but my photo is from mid-October. I had my last chemo on June 18th and my hair isn't much longer than it is in the photo. You are so right about a getting a cold head. Thankfully, I still have my hats from HeavenlyHats.com.
Ladies just starting chemo: Please check out HeavenlyHats.com if you are need of some headcoverings. I signed up and about 7 days later I recieved a wonderful box of hats from them. I think there were eight hats total: a wool hat and ski cap, a pink ballcap, a couple of newsboy caps, and four wide brimmed sun hats. I only wore hats when my head was cold or I was out in the sun, but these hats were terrific!
Cheers!
Cloud
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I am NOT complaining, I swear I'm not. But the longer my hair gets the more it takes on a life of its own. The top is curly, the sides are wavy and I had no idea I had so many cowlicks. I have always worn my hair long so I guess you don't notice those things. I am trying no to do too much heat styling because I don't want to damage what I have this early in the game. Oh well, sre beats bald!
Have a great day ladies!
Lisa
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Amy & Cloud your hair looks great. I still don't have much more than you do Cloud but I did get my shaped once. I am trying not to put any gel or stuff on my hair either. I do use conditioner but I always used that even when my hair was really long. I think mine is getting thicker now but my head still gets cold. I am a year passed TC so I was hoping to have more hair by now but I can live with it gray and all. I need to have hubby take a pic of my hair but he does not like my camera. I have tried to take my own but does not work out very well. I should do it outside where the light is better. Mine is long enough to stick out when I wake up and I look scary!
Gin52, I am glad your BRACA was neg. My brother and I both had cancer within months of each other and we lived hours apart and we both had HER but I never found out what his path really said. His was of the tongue and lymph nodes in his neck. I had some lymph node involvement too. he will be gone a year in Jan 22. I sure miss him but I stay in touch with his wife. she had a rough time of it.
We are training a new puppy. It is my grandson's and he wants to do most of it but we have to cage train it and house break it. What fun! NOT
Carolyn
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Cloud thanks for the website I have been wearing a wig and hat for over a year so this is great now I am down to a hat and sorry Lisa no pitty for your hair at all I have none or not enough to go without a hat without getting a look like oh she is dieing its awful I use to have thick natural wavy hair now what i have is thin and straight as a stick so I pray every night for hair thick or thin or curly or straight hiar ...all of you ladies are lucky that got yours back because I used Taxotore and I am in the group of nonhiar..but I have hope ...
Bella thanks again for the hat website I didnt know there was free help anywhere besides what they have at the chem labs people donate.
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Hi eveyone, I havent posted in a while, but still here. My hair is growing too, seems to be at the same point as a lot of you, last chemo was July 13.... still on Herceptin until about March. I went to my onc today for followup and blood draw and I really made him laugh. When he commented that my weight was remaining stable, I told him " ya , but you have to subtract 5 pounds from that because these fake boobs weigh 5 pounds.!!!!!" ( I have 2 prosthesis). He was really caught off guard and had to laugh, maybe even blushed a bit.
Am scheduled to get expanders in January.... onc was a little concerned about me starting that while still in treatment.....just Herceptin...... but anyone else have a problem with that? The Plastic Surgeon thinks its fine.
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