Chemotherapy for Stage IV
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Hello Everyone,
Let me first please say that I am so thankful for all of you. My mom was diagnosed with breast cancer in 2010 and last week we found out it has returned. She is Stage IV, HER2+, Estrogen/Progesterone Receptor Neg. She will be starting Taxotere and Herceptin next week. The cancer is in her sternum, lungs, lymph nodes, and liver. If anyone can help me answer a few questions or let me know a better place to post them, that would be greatly appreciated.
1. We were told she will be evaluated (CT scan) to see the effectiveness of the treatment after 9 weeks. Is that too long? Has anyone been evaluated after a shorter period of time? Would the cancer possible spread too far in that amount of time if the treatment wasn't working?
2. Also, I read that the biology of the metastatic cancer can change from the original breast cancer (Her2+ to HER2-; est/pro receptor - to est/pro receptor +). Has anyone had their metastasized cancer biopsied to see if there has been a change? This can drastically impact treatment options but her onc isn't planning on doing a biopsy of the metastasized cancer.
3. My mom will be receiving Taxotere every 3 weeks. Is that too long between administrations of the chemo? Should it be 2 weeks? 1 week? Any information would be greatly appreciated.Thank you very kindly:)
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Lilah,
Hi first let me say "hi" and sorry to hear about your mom. You could post in the main area about anyone of your questions. I will try to answer some of what I know about your questions. Three months is generally the time frame between scans. From my understanding that has multiple reasons. First you can be over scanned and if the disease has spread generally the treatment you are on is working to a point. Three weeks between treatments is very normal. It doesn't mean your mom is getting less of the drug overall..just more at the one time. Plus taxotere is generally given every three weeks. Your moms body will need the weeks between to recover. Progression is a hard one to pinpoint. Will it grow really fast in nine weeks..normally no..but it does depend on the size of the tumor. Cancer works by cells splitting..1cm becoming 2 cm isn't a lot. If the tumor is say much larger obviously a growth could be harder on her body. Right now it seems like her oncologist is right on track. As for the tumor changing..I have heard some of the ladies speak of this and I asked my surgeons about this...sometimes if on hormonals your biopsy will come back with a different component because the drugs are affecting the tumor. When we first were diagnosed we weren't on treatments. I had biopsies and surgeries done with my stage four diagnosis..not ever doctor believes in surgery either. I had to stop arimidex my hormonal drug I had been on for three years prior to my surgery other wise it would have been suppressing the components of my tumor and possible give them a false negative. Others I have heard have mentioned their rumors changing. I'm not sure why that is so..sorry I'm sure someone will pop on with more info. I hope that helped some. Once again sorry you found us under these circumstances but happy your mom has you in her life!
Hugs kimber0 -
Lilah,
I, too, am sorry you had to join us. You have come to the right place for help. I agree with Kimber, it might be a good idea to start your own thread. You will probably get a lot more help that way.
If you go to the stage IV metastatic breast cancer forum (you can get there by clicking back to top of this thread and then click on the forum title. You will find a red place to click that says "start a new topic".
I was on taxotere for about 6 months. It was great for me and put me in what we call NED (no evidence of disease). I had to stop because of the foot pain but would really have liked to stay on. Scans every 3 months sounds about right.
Yes, the biology of the cancer can change but I don't know a lot about that. There are lots of knowledgeable women who do so 8'm sure you'll hear from some of them mid you start a new topic.
My SE's were toenails and fingernails turning black and lifting off, food tasting terrible,but lemondrops before meals helped that, and of course ,hair loss. I also experienced either diarrhea or constipation but never nausea,thank God. The chemo is very doable and I would gladly do it again considering my good results.
Best wishes to you and your mom.0 -
Lilah, that is my granddaughters name and also how it is spelled. I too am sorry that you found your way here but glad that you have and are asking really good questions for your mom.
I think waiting 3 months for a scan is pretty normal here for us. My oncologist feels that give a drug an honest run to see if it will help. Sometimes, if a patient feels that a drug isn't working and the oncologist has questions also, they will scan earlier but most stay with the 3 months.
I did have a bone biopsy and I "thought" the purpose of doing that was to see if my tumor had changed. As it turns out that was never checked. When I questioned my ocologist he said that 90% of tumors didn't change their makeup.
I have no experience with Taxotere - Glenna has given you lots of info on that drug though.
Wishing your mom great results and know that she has a wonderful support in you.
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I donated also...it is the thing to do in lieu of flowers. So much grieving...but all a part of living too.
Kimber and Glenna - hope the foot remedies are working and that you both have better days. I am going to look into some essential oils for my pain, neuropathy, etc...will share if it works.
Nan - please don't beat yourself up...each one of us handles their journey differently. We ALL have 'whining' days and have shared them with each other. That's why we are here...for each other. Everytime you post, your se's, your drugs, your feelings, etc...it WILL mean something, help someone, along the way. Please don't forget that...information....good, not-so-good...empowers us all. BIG HUGZ TO YOU!
Love and Prayers to all.
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I donated today also - just doesn't seem real still.
When I got in the shower today, I realized I really do have some neuropathy in my feet - had water running to make sure it was the right temp when I turned on the shower. My feet hit that water and they felt like they were burning. Hadn't noticed much with my hands but this evening cleaning the kitchen, realized the warm water was making my fingers feel as though they were burning too.
I called the pharmacy today to see if they had cream with urea in it to use on my feet and hands. They had some so have used it on my feet and have my socks on and used on my hands too. How many times a day do you use the cream? Is this all that I need to do for now? Guess I need to go back a page and read.
Got a call from the GI specialist - have an appointment to see him Tuesday. The scans showed my small liver met stable but the bile ducts were also dilated that goes into the liver and I have been having quite a bit of pain on my right side and feeling very distended. I will be glad to be checked, have an exam when I'm having pain and see if the liver is distended. Just hoping nothing is hiding as I have lots of hemangiomas in the liver and a fatty liver too. I do ok as long as I don't have nausea 24/7.
Anyone seen Soleil?
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Soleil's been posting some on Marybe's red devil thread and she started a thread called prayers for Marybe (I think).
The bag balm is working on my peeling feet after just 24 hours. I put it on a couple of times in the evening and once in the morning, So far, so good with my chemo. I did make it throu the baseball game tonight but am totally exhausted. It was a very exciting game and my grandson loved it!
He also loves that he gets to stay home from school tomorrow. He's a smart little guy though so I son't think it will affect him too much.
Going away this weekend so don't know how much I will be on. Back on Monday. Take care my dear friends.0 -
Hi gals...I'm enjoying my week break from chemo. Glenna so glad you had a good time at the game. Isn't it amazing the things we can do sometimes just to make some sweet memories:)
Naniam...the doctor wanted me to use the revitaderm twice a day. Then use a pumice stone ever other day. Guess what that didn't work for me..lol the revitaderm has a light acid to it so it removes the skin while extreme moistening. I apply it every other day at night making sure not to put it on the raw areas..I get a lot of bleeding in the arch or more sensitive areas. I use the eucerin creme every morning and on the other nite I use a little bit of a steroid cream. But I think I may go pickup some bag balm to try in the am. I've tried all kinds of junk.
I even tried emu oil and have to share a funny story. So my hubby buys this emu oil and I coat my feet with it they are all greasy and I put on my socks. I notice it has a tiny smell to it...because I had to wash my hands twice to get it removed. I head downstairs and I start to walk across the living room floor and my dogs both come a running. They are sniffing my socks going spastic. So I'm thinking this is a hoot..the whole family congregates at my feet now. My little guy starts diving at my feet( chi is 4lbs and Meeks is 6lbs)..rolling his back on them..just going in sane. At this time I'm so surprised I don't have a puddle of pee on the floor from all the laughing! All we could think was the my guys have never been to Australia and never met an emu ....so my socks must have smelled really good to them...lol. I'm glad we can find bright moments even when things are hard; )
Sue...I loved what you said about sharing it is so true..love you gals ton!
Have a great weekend gals! I have drs apts today with my son...so we are off to st Louis today. Hugs to you all0 -
Glenna, Have a wonderful weekend at the beach! I feel the same as you do. Things can happen so fast . We all have so many days. Since I've been sick, I've tried to make that my guide. I have so many days, live each of them best I can. Sometimes, I do lose my guide. But I'm working on it.
Naniam, I'm glad you had a good day. Sad to see you are having so much trouble. We all have sick down days filled with tears, sickness and pain. Don't think you hold the champ cup on that. We all have them. I know I do, other days are good days. I hope you have more of those now.
Kimber, What kind of anti nausea meds are you on? sounds like you need more or better ones. Good luck with your tykerb battle. There has to be a way to help with the nausea. I hope you find it.
I started affinitor last night. I've been off any chemo for close to a month now. Yesterday, the room was slanted I had trouble walking. Furniture kept moving about . I was freezing, wearing a blanket despite the 80 degree temps , very nauseous. Today, so far, I feel a bit better. Don't want to be overly optimistic but I'm not shivering and the room is no longer slanted
I'm taking as a small success. Yesterday, I realized how quickly this can get me. Very scary.I wish all small and large successes today.
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Just wanted to pop on and say "hi" . I've been playing with the tykerb..I took it the other day in the am and had an interaction with other meds. I was getting shocks in my head that then shocked my hand. Nerve impulses basically..scared the you know what till I called the dr and they figured it out. Took about two hours to wear off..of course at first hubby was convinced I had a brain tumor. So needless to say interesting..lol
Had a quiet weekend besides that with the family. I was thinking of Glenna at the beach hope you had a good time:)
(((soleil)) your in my prayers..don't let the drs bully you:) I have zofran to prochlorapazine for nausea. My problems honestly are I was sick prior to cancer so most of this just gets amplified due to my heart conditions..I've had two major heart surgeries and lots of meds before cancer.
I miss Laurie..been praying for her but saw that her hubby set up a BBQ for her the other day:)
Lilah..thanks for the note..please keep us posted.
Naniam and sue hope your doing okay.
Hugs to all
Kimber0 -
Kimber - UGH....that sounds scary as hell. Glad it wore off and you were able to enjoy a quiet weekend with your family. I've been OK. Have had my 3yoa Granddaughter since Friday. She goes home tomorrow. She's worn me out, but have enjoyed every minute.
Glenna - hope you had a great weekend.
Soleil - BIG HUGZ!!!
Nam - today is your GI appt..sending positive energy your way.
Love & Prayers to all!
Sue
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Folks,
I have an odd question for you. Have any of you NOT undergone chemotherapy, but just hormonal therapy for your Stage IV disease? Just something I heard in passing from a physician some weeks ago and I keep thinking that perhaps I did not hear him well.
Many thanks for the input,
Susan0 -
Scorchy, I was on hormonals only for the first 2.5 years. When one stopped working I switched to the next, so depending on how long they work for you, you can be on them for quite a while. I think there are some on here that have been on them for 5 years or more.
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Thanks a lot Frapp. Appreciate the input very much.
Scorch
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Hi Ladies,
I heard a rumor that my oncologist is leaving - so I emailed him and told him I had heard the rumor and ask if it was true that I needed his input and thoughts on where to continue my care. It is true - I am so upset. I have been seeing him for 7 years now. I travel an hour to a Cancer Center for my care. Just like with the dilated bile ducts he didn't wait, he ordered the special MRI procedure - MRCP to evaluate the ducts. It didn't get pushed aside or ignored and if I stay in my town, we sure don't have that kind of equipment or physicians to deal with a problem. I don't know what I am going to do.
I did see the GI specialist yesterday. He did feel the edge of my liver. If there is a problem, it isn't showing up in lab work yet and he suggest that we just wait this out. He did say that it certainly isn't an area of the liver you can removed and I think all they could offer would be a stent in the duct to give me some relief - but we will cross that bridge when we need to.
Kimber, I agree - that sounds very scary. Glad you are doing better.
Mema, glad that you got to spend time with the grand. It does make our days brighter to have them with us, even if we are tired by the end of the day.
I haven't been here in a few days so need to go see if there is an update on Laurie.
Wanted to say hi, a BC friend from out of state is going to drive in for a few hours visit with me tomorrow. I am excited. I'm tired too - tried to "clean" a bit today and then went outside and trimmed some shrubbery.
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Hi all,
Just took all my night-night pills so if I start to sound loopy you will know why. Scorchy, I was on hormonals for years before they stopped working and I had to move to chemo. I think that is pretty standard for ER+ folks. Laurie .... hope you are out having fun and making wonderful memories with your family! Kimber --- ooh, scary. You must've been freaking out. So glad it finally wore off and you're back to normal (what is normal?). I'm exhausted from a very long day. CT scan in the a.m., then blood work and onc appointment in the afternoon. All is well. Onc says the tumor in my lung has shrunk about 50% since the July scan. Yippee. Shrinkage is good. Because the doxil is working, I will stay on it. I really love it. Once a month, maybe a week of being tired, a little problem with the feet, sometimes the big D and sometimes the big C but all in all, a powerful chemo, doing good stuff, but not causing a lot of SE's. I'm psyched!
Naniam, OMG, I don't know what I'd do if my ONC left. I hope yours will give you some good recommendations for someone as good as he is and that you will be able to connect with. That is just devastating news. Your liver news sounds promising .... let's just hope no problems EVER show up.
I had a great time at the beach with girlfriends who pampered me, though I did miss the time I usually have with my grandson. Mema, aren't those times with the grands just the best? I'll see him at his football game this Saturday. My DH and son did enjoy guy time with him, though. I hear they played a lot of football and baseball.
Soleil, affinitor sounds a bit scary, furniture moving and all that stuff. Hope your body has adjusted and you're not having those wierd SE's anymore. It does sound like you are working overtime at your business with the seasonal switchover and preparing to bow out. Please, please, don't overwork yourself.
Love you all and depend on you more than you know. Glenna0 -
Good morning, gals:) ...I hope everyone is okay. Glenna that is such goodnews about your scans...woohooo! Oh Naniam..I'm so sorry about your oncologist. I know I would be devastated to lose mine now. It took us several months to get a good thing going. I had to move last year when we first realized I was sick again..it was so difficult to bring a newer up to speedon me. I will be praying you find someone you are comfortable with soon!
Scorchy I too was just on hormonals for about two years till they stopped working.
Well gals have a wonderful weekend.
Hugs to all
Kimber0 -
Hey ladies!! Excellent news Glenna!! I'm psyched with ya...such gr8 news, you GO! Yes, gk's are one of the sweeter things in my life, they and my furbabies. Lots to be thankful for everyday. Glad you had a good time with friends and that you allowed yourself to be pampered a little...you deserve it!
Kimber - is the tykerb getting any easier to handle? You have been thru the chit lately..too much...Always in my prayers tho!
Nam - sorry to hear about your onco...I'd b very upset too. Good note, sounds like the liver not as bad as feared...will keep praying it stays that way.
Scorch - I was hit with both chemo and hormonals at dx. Still on hormonals and will probably for years to come. I didn't kno NO CHEMO was even an option for Stage IV mets. Very interesting to see some of the replies. Good luck and feel free to share your questions and concerns.
Prayers and Positive Energy to all!
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Hi Mary Beth,
We just found out my mother (age 60) has mets in liver (bc patient for 3 years) and I have been looking at survial rates which are so low I immediately broke down. Thank you for giving me hope and I am going to print your post to take to her in hospital. She had pain for 3 months (taking her to message therapy, chiro) and in the end it was a tumore on spine, now has rods, etc and they found the liver mets so she will start radiation in 15 days and chemo in another 15 days. I'm not sure what to ask the doctor. Her marker was find in April and now it's at 200 (not sure how it wasn't found in April) and doctor says this all occurred in 3months so that it is super aggressive. Now she has to deal with back surgery because they were afraid her spine would be damaged and awaiting her to clear from that surgery 3 days ago so they can treat her for liver mets with chemo. Any questions I should ask onco? I asked why nothing showed up in April??
I don't believe her answers.
Tania
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Lilah,
My mother is in same position as of 2 days ago. I have similar questions on whether the biology has changed.
I am going to ask Oncologist today. I don't know everything that you know, I need to ask the actual
description of the cancer (+,-, hormone, etc) I feel so uneducated, I should have known more before it got to this
point. She had b/c a few years ago and 2 of the nodes were positive, I wish I would have researched then. She had a pain in her back for 3 months before she was checked and by then her marker went from 20 to 500 she said. How could this happen so fast?
thank you to everyone as of last night I was grieving and didn't know where to go .
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Tania,
One of the first things we tell new posters is not to look at the statistics. By the time they are published, they are old. Besides that, we are all unique and respond to treatments in different ways so no one can tell us how we will respond or how long we will survive. It sounds like your mom has a rough road in front of her and you are having to learn a lot very quickly. My oncologist feels that tumor markers are so unreliable that he doesn't even do them. I have heard of TM's in the thousands so please don't panic. Also, don't kick yourself for not learning more earlier. You didn't need to. And now you are researching and learning what you can. You sound like an awesome support for your mom. Just remember, you might need support, too, so come here, lean on a good friend, but don't try to go it alone. My thoughts are with you and your mom,0 -
Hi all!
Tania..welcome! I'm so sorry about your mom..but Glenna couldn't have said it any better..we are all Hereford anything you need. Please don't look at statistics....we all do but so many of us are doing so much better:)
Well ladies ...I have a question..technically Im not really on a chemotherapy anymore...herceptin is the only drug I get by infusion. The doctor agreed to let me keep trying the tykerb for another month to six weeks(next set of scans). I'm only on a 40percent dose but we are hopeful it is doing something. So I guess I'm really not part of this thread anymore..but if none feels like I'm over stepping I would like to post from time to time here. You girls mean the world to me...after losing almost all of us original chemo girls..I feel closest to those of us that remain. So I will keep my posts here to just support for you lovely ladies...till I'm back on chemo. Can't tell you all how much you mean to me ..love and hugs kimber0 -
Kimber,
You BETTER keep coming back here. I don't want to lose contact with you and besides, you are such a help to the newbies because of the chemo you've been on. I really think anyone who has ever been on any chemo should keep visiting this thread.
Sometimes I go back to the xeloda thread and post, especially if someone is asking about other's experience with the drug. It's all about helping others!!
Hugs, Glenna0 -
Well said Glenna to both Tania and Kimber!
Kimber I'm only on herceptin but most of the time everyone (med field) considers it chemo. But this is the thread I started on and if it weren't for you and Glenna, ChrissyB, and, of course, those we have lost, well...I just can't imagine not popping in every now and then. I need to share AND I need to kno how you'all are doing. This is kinda like my 'homeroom' ya kno, from elementary school?
Anyway...got results of my tumor markers (in normal range) and Bone scan...NED! The CT of abdomin, chest, pelvis fell thru cracks, so get that test this Fri. But...with CEA and CA in normal range...feel pretty confident about the results. Just wanted to share and hopefully give some hope to all the new gals. :-)
Love, Prayers, and Positive Energy to everyone!
Sue
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Yeah, Sue! Love hearing those good results. Will be hoping the ct scan gives you good results, too.
I know what you mean about this being like home room ....
I'm guessing I'll be on some kind of chemo forever but I really think if I wasn't on some kind of treatment I'd feel like I needed to do something. I really don't like chemo breaks tho I do think we need them.
Love fall and watching my grandson play sports and the feeling in the air .... Enjoy your week, all!!0 -
Great news Sue! I'm so thrilled for you! Thank you gals for understanding
Sue I keep forgetting to tell you I'm originally from Vegas. I left in 93 but my folks and sister still live there. I loved Mesquite...it was our dinner stop most Friday nights on our way to our cabin in cedar city. Small world!
Well just got upto take meds and thought I'd come say hi!
Hugs to you all and prayers!
Kimber0 -
Today I find out if insurance will cover the spheres. I'm a little afraid to call. I think I'll wait until around 3 . I've been visualizing myself get good news. Think that will help?
If I don't qualify, do said I could chose a few options. Think I'm leaning towards Navelbine. But I'm hoping I won't need to do that.
Meantime, I've done a fairly good job of keeping all of this off my mind. I'v gotten over the original scan shock and am feeling like everything could still be allright
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Keeping my fingers crossed for you and chanting to the insurance gods.......say yes, say yes, say yes!!!
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Looks like they are saying no.....nurse advocate said we will know on Monday but its not looking good. So, I'm scheduled to start navelbine on Wed as a back up . Looking at this weekend like a chemo break weekend and trying not to worry
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so sorry soleil, hope they change their minds. i will be praying for you this weekend. i dont know what navelbine is. i will look it up. hang in there:)
susan
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