Chemotherapy for Stage IV
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Ladies, Faslodex was my first mets treatment and after 5 months will be moving to Abraxane. I can't find an individual thread on it but sure would appreciate any info on your side effects and how you deal/dealt with them. Get my port on Friday. First treatment on May 29th. Guess everyone does 3 weeks on and one week off. Worked it out to where my week off is the week we had planned a family vacation - first ever- based on my Faslodex treatments.
So any Abraxane ladies here?
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I bumped a couple of abraxane threads for you. I did 6 rounds of abraxane (3 weeks on/one off). I had very few SEs from it. It did slaughter my platelets but we reduced the dosage slightly so I didn't have to skip a treatment (missed two).
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I did abraxane, but got it weekly....my onco seems to like to do this weekly stuff with me. It is a member of the taxol family and for me it was a rough one, however I know of many women both in person and on the threads who tolerated it quite well. I did 22 treatments of it and stopped because of neuropathy. It shrunk the tumors in my liver and took my tumor markers down. I lost all of my hair while on it, but think Cool Breeze still has hers and she has been on it for awhile now. Also, it did a number on my nails, but Adriamycin is doing that now and that is not a normal SE for it so maybe my nails are just susceptible to problems. If you put Abraxane in the search box maybe you can find a thread on it.....at least I know it used to work by doing that, but am not sure how you find things with the new format. When I got it, I also was doing avastin every other week. I don't know what I would do without my port....makes treatment so much easier.
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Reesie , I saw those 2 threads that you bumped for me - thank you !. I went to page 3 in the Stage IV threads and didn't see one.
Marybe, thanks for the info. I'll be on the Abraxane and Zometa. Had a horrible time getting my port the first time - radiologist was very frustrated and ask if I had one before (no) and then said "well I guess it is just how you are built as you veins are small and not straight" Not a pleasant experience!
I have seen some say the infusion didn't take long but I specifically ask and was told an hour and a half. He also said I would loose all body hair and warned me that he would have to keep a close watch on the blood work as this med could do a number on them - of course the neuropathy and nausea/diarrhea. But so many haven't had any of these side effects. I wonder if they give different strengths? My oncologist doesn't do tumor markers so from what he said today 3 series of treatments (9 treatments) then would scan.
You have made me feel better about taking the drug.
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Had my first Taxol last Monday. I think I just put chemo on my "to do list," and was sort of in denial. When I woke up sick Thursday, I was surprised and then realized I may have just not thought enough about the fact I was starting chemo. It was a very slow drip, so I was there for 6 hours. Been trying to read through this long thread. There's so much people go through. The progression in my sternum has been bothering me (pain), day/night, but especially at night trying to find a sleep position is the pits. Any suggestions? I got two scarves to prepare for hair falling out, but I don't think that will be enough in the summer (especially on hot days when my head sweats). Nurse informed me that by my next drip (every 3 weeks), my hair will have started falling out. She also talked to me about getting a port. I'll talk to onc about that next Monday at our visit. I'm not thrilled about more day surgery and would rather they just IV my arm. Any thoughts on that? Jean
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Hello Jean,
I go for Taxol number 7 tomorrow (I'm doing the weekly dose - 3 weeks on and 1 week off), and have no port or line. As long as I drink plenty the day before chemo, they manage to get into a vein, even if it takes a couple of tries sometimes. And they can only use one of my arms as I've had ANC. So it can be done!
I had a lot of pain in my sternum before the tumour was found (5 1/2 years ago), but rads soon got that under control and in fact, got me to NED for 5 years with the help of Arimidex. Could you speak to your team about the possibility of rads to your sternum?
Yes, it takes about 3 weeks for the hair loss to kick in. I still have a little bit left 4 weeks after it started to drop, but am using scarves and hats.
Feel free to PM me if you need more info on specifics about the Taxol or the sternum. Good luck!
Angelfalls xx
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Angelfalls: Thanks for your reply. In 2009, I had rads to sternum . That's one of the areas I have progression in. I've only got one arm that can be used too. The nurse mentioned that after awhile, the Taxol can damage the veins. I'm gonna talk to onc about not getting a port. Just don't want another surgery right now.
I'm getting Taxol every three weeks and was told my hair will start falling out before my 2nd treatment. My plan is to buzz it when it starts.
How do you feel now that you're up to the 7th treatment. Do you know how many you are getting?
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Yes, my sternum is active again now. Shame we can't get more rads to knock it back!
Maybe you could just see how your veins hold up and go for the port further down the line if you need to. My onc spoke to me about getting a PICC line before I started, but I didn't really fancy it (!), so she agreed we could see how I got on and get one later if needs be, but I've been ok so far, although I'm tempting fate now, of course!!!
I'm doing ok with SEs too - just a bit of fatigue and some mild mouth issues, really. I'm finding it a lot easier to tolerate than Xeloda, 3-weekly Taxotere or FEC. But the fact that I'm doing weekly doses helps. If you find you're struggling with SEs, perhaps you could switch to weekly doses, too? I have another 3 to do (1 more cycle), then I'll have a CT scan to see if it's working. If it is, I'll do another 3 cycles or 9 doses, I think; if not, on to the next tx...
Let me know how you get on.0 -
My sternum hurting was the tip off that something was going on and after they did the bone scan they found out half my sternum was eaten up....I am soooooo glad I left that onco. It no longer bothers me at all, but of course still shows up in the bone scan and probably always will. The zometa will help your bones.
There is a place you can get a free scarf....Goodwishes. com I think it is....will check to make sure. They are nice headwraps and you can't beat free. I wear a bandanna to work, but go around with no hair most of the time. I have a nice wig, but just hate the feeling..they itch and are hot, at least for me they are. You can get some nice wigs for not much at Paula Young.
Good luck to all of you just starting new treatments.
Here it is info@goodwishesscarves.org).
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Thanks for the info on pain and Abraxane, Marybe. I didn't know that and my back has been hurting more than normal. I also am getting more headaches. Other than that, this has been a very easy chemo and it is not messing with my blood like Navelbine did.
Yes, I still have my hair on Abraxane. I'm quite surprised. It began falling out on Day 23 but I have very thick hair and so even though about half of it is gone, I look normal. I have lost it in the temples but bangs cover it. I wear a headband to keep it in place and nobody can tell at all. It is still coming out but not in big chunks like on taxotere/taxol - just five or six hairs each time I touch it. I imagine that eventually I'll be bald but who knows, maybe I won't be. It won't be soon at this rate.
I have slight neuropathy - just sensitivity in the hands and feet but not terrible. My stomach won't take the l-glutamine I used to take so I'll have to see if it comes in capsules. (Stomach problems are c-diff related).
Jean, I did my first year of treatment without a port. The only reason I got one was because they put me on Navelbine and that is hard on your veins and quite painful too. I only did one infusion of that before I realized I needed a port. I did taxol, taxotere, carboplatin and herceptin without a port. My veins held up just fine.
If you don't want a port, you don't have to get one. Some nurses behave like it's mandatory but it isn't, especially if you have good veins. I don't like mine, it is uncomfortable and ugly as can be. (Mine is in my arm, not my chest. by my choice.) I'm very thin, one of those emaciated cancer patients,
and so the port sticks way out and interferes witih things. I wish I didn't have to do it. I never minded being stuck. Just remember, it's up to you, not your nurses. And, lots of people love them so get more opinions than just mine.
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I went looking for that scarf site. Found it. http://www.goodwishesscarves.org/
How wonderful of them. Thanks for the tip Marybe.0 -
I'm on my second round of abraxane. One more to go.I think my markers are down, on does not reveal this info but jusgeing from her demeanor and positive reactions, I think I'm doing better.
I have neurapathy, it causes pain in my shins, ankles and feet. first round, I just about curled up and quit. This time, iI'm exercising more, I'm walking and working out as best I can. I feel better for it.
I have an anit nausea pill I take each evening. For me nausea is mild but existant. The pill helps quite a bit.
My hair is falling out, very depressing, messy too. But I still have some, I have bangs so I can wear a hat and look almost normal.
I wish you luck on abraxane. Stats say 30% of those on abraxane kick the liver mets. My onc says stats are better than that. Hope so! I have scans early July, if the abraxane failrs I have alist of new chemos I want the onc to look at. Good luck to you! Good luck to all of us.
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When I was first dx 12 years ago, I had a port. I'm thin and it just bugged me like an irritation. When I finished the chemo, the first thing I did was ask for them to take it out. It reminded me of Frankenstein or something.
Thanks for posting that scarf info. I'll take advantage of that. Free is good! I did grab a chemo cap from the onc office for days my head is cool. I haven't noticed any hair falling out yet, but it's only been 9 days since my first round.
Here's to us having a good day today!
Jean
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Coolbreeze, Hair will start growing back while you are still on the Abraxane usually so maybe you won't ever be able to notice the loss since you kept quite a lot of it. I will say it's a PIA, but after having done this several times, it's no biggie for me to not have hair. I remember when it was really coming out ( I did not shave my head at the advice of my beautician) even though my hair has not been long for many moons, it was EVERYWHERE.....combine that with the dogs and the long haired cat I used to have, it was just awful. I called my home, The House of Hair and pretty much stopped baking for others during that period. One of my friends said it was Ok and just to tell people it was a signature hair, but I did not think people would go for it. Oh that Best Wishes place is great...they will enclose a nice card and a brochure telling all about their organization....I now donate to them.
They had a really tough time finding a vein for my port....think they had to try four times before success because I remember waking up and seeing all these little bandaids. I guess you aren't really out since he told me they knew where they were this one time when I was complaining of my ear hurting....I asked I was? and they said yes. Maybe it's a deep twilight sleep. Anyway, mine I think is not the normal location...it's on my right not really in the middle where cleavage is, but above my breast ( my real one which I wish was gone also, but didn't think about that then) towards the middle. I can wear just about anything other than something that has a deep swooping neckline which I would not wear anyway at this stage of the game and due to other bulges do not wear spandex or clingy tops anyway, but do wear v-necks and unbuttoned blouses and it does not show. Now when I lst got it, it resembled a door bell, but it is a combo of it settling (just like the actual tubing did...that used to really stick out on my neck ...it goes right into my juggular since my other veins were not working for them) and me gaining weight over the years. I know a port is not for everyone and although I did not mind getting stuck, after three or four tries I am just about ready to scream Alright, Already, That's ENOUGH!!! I have had mine since 1999...did not get it in 98 when my mets lst came back because I did not want physical evidence, but gave in and got it the following year. It has worked every time so I am really thankful I have it, but as I said, they are not for everyone. My best friend could not wait to get hers out and she did, but she doesn't have mets so chances are she may never need one again....knock on wood.
Jean do you get Zometa for the bones?.....I did for a long time, but now get Xgeva.
Soleil, Why doesn't he tell you the results of the CA27.29? So you won't worry if they are up? I am always on the phone the day or two after, asking for mine. I am the same way with scans, go and get the reports from the hospital....I just like to know.
Since I had my treatment yesterday afternoon instead of this morning as usual, I have the whole morning to shoot before going to work, so I just got done baking cookies for a shower my friend is having....poppy seed with lemon filling....will do the filling tonight or tomorrow.
Have a good day everyone. Marybe
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I just read a PM from Chillipad and also saw where she posted on the Alternative thead and several others.....the Adriamycin they decided was not working after two treatments. She said her onco said there really aren't many more options. She is now doing that black salve and I just find it unbelievable all she has had to go through. I mean it is bad enough to know you have cancer inside of you, but to have a big huge ooozing tumor to deal with that is painful...I just cannot image. I know you already do, but please say prayers for her.
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Marybe, I can't imagine dealing with a big oozing tumor either - prayers for Chillipad. My veins are tiny and a port placement was quite difficult. They are also curled and the radiologist got quite frustrated. I looked as if I had been beaten with a base ball bat the next day. I ask about a surgeon doing it this time but oncologist said he would literally have to beg for them to put me on their schedule and it would delay treatment. So get my port on Friday - mine was over the "good" breast - not in the middle. Honestly, I am not looking forward to getting the port insertion. Port was ok - getting it inserted was a problem.
Soleli, Coolbreeze, my hair has thinned on the Faslodex. First Abraxane treatment on the 29th. I guess I need to look at a hat and scarf just to be on the safe side. Soleli,just to be on the safe side I think I will use the sublingual Zofran for nausea prior to my first infusion. Not sure nausea will be an issue but hopefully I can be proactive and see how I do.
Before my mets diagnosis I was getting a radiowave nerve obliteration procedure to my lumbar spine for pain control. It "blocks the nerves" for 8-9 months. They just recently woke up on the right side and has not been fun. Oncologist gave his blessing to have again.. Saw the pain management doctor this morning and he was really great with the change in treatment and not knowing what, if any, side effects I will have, he worked me in to get this procedure done next Thursday. You are uncomfortable with some nerve painfor a few days after the procedure but should be fine by the treatment on the 29th. Gives me 5 days between the two.
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Just wanted to chime in on the port thing i had one and it got real infected so i'm on 2 antibiotics for 5 months and yes taxol is hard on you veins they have the main guy to my iv. heres what i've learned that helps him get it. drink 2 bottles of water before i go in, put a hand warmer thing on my arm about 2 hrs before. and wear warm shirt. so far it helps they are weaning me off the taxol so soon it will be just X hope all are doing well today love
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It's funny how differently we all react. I do not go under with twilight sedation - it doesn't change anything for me. I had port placement with it, as well as my liver biopsy. I remember everything and got no pain control with it. Fortunately, I didn't find the port placement painful until after the local wore off. I certainly found the biopsy painful! I'm a tiny, skinny thing so they give me far fewer drugs than my system needs, I think. I don't react to meds the way most do. When I was in the hospital, the nurses actually were afraid to give me my pain meds because the dose was so high for my size - one said she was afraid she was going to kill me. Yet it didn't affect me at all. I have never gotten that "high" or whatever it is people get from meds and my pain control is minimial. Fortunately, I have a pretty high tolerance for pain.
I have worried at the end they might not give me what I need for pain control since I require so much for a 95 pound woman, but I put in my advance directive that I want enough pain medication to control pain, even if it shortens my life, so hopefully that will be honored.
I don't know Chilipad but why won't they remove her tumor? It doesn't seem like it should be left there if it's causing issues and oozing. Poor thing.
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When I had my port put in, it felt like a horse kicked me in the chest. Then when I started driving again, I noticed the port was exactly under the spot where my seatbelt was, so it was irritated every time I drove, and then I was scared if I was in a wreck that it would cause a lot of damage. I was happy to have it out, although it grew in well and hurt like the dickens to get it out. I have a lovely scar that I see every day that reminds me of it. But now I have one sad little vein that is a good one and some days i wish I had it back. The surgeon that put it in did say she had put them in arms before, it was something I would consider if I needed another port.
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Okay, I am sorry this is not a productive post but I really need to get this off my chest... Why does it anger me soo much when people text or e mail me and say stuff like"you are beautiful and strong" or "you inspire me" , "i know you are strong" ...Etc.. I just want to tell them to shut up!! It drives me crazy!!! Some people just send funny pics or funny texts... That I like! I know I have cancer and I know it is bad and I know I cant give up, I do not need people to keep throwing it in my face every day or to be reminded to "stay strong" especially when they do not know what the heck I am going through!
I told my husband that I hate those remarks and he thinks I am crazy and need to be on medication!
Am I being crazy or oversensitive?0 -
All I can say is that I hate the "you are strong you can do this", "you are the strongst person I know". NO, I'm just doing what I have to do to have more time. I don't have anyother choice until I just say enough,no more. You need to be on medication? No. I understand that people think they are being encouraging and supportive but it really, really gets to me. I do understand why it bothers you. That was said to me recently and I said "well, I'm tired of being strong".
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Thank you! Exactly what I am saying! I want to reply with "blah blah blah!" really do not want hear! Another thing, I have to go home to mass in June for little brothers wedding, not looking forward to all the gawking, and the oh you poor thing, and the stay strongs!
Ulgh! I know I should be thankful for family and friends, but it is mostly family that says the thongs that annoy me the most!0 -
I always think back about stupid things I have said over the years not meaning to be stupid .... people don't say things like that to irritate you. Sometimes they just don't know what to say and possibly think they are encouraging you. My response has simply been, "I'm not brave (strong, whatever) I have NO CHOICE and sometimes add (if I want to live). I understand totally why it irritates you and must say I get tired of it, too. Fortunately, most people aren't in our shoes and they have no clue what to say. I just feel they are really not trying to be stupid or hurtful and try to let it go.
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I always think back about stupid things I have said over the years not meaning to be stupid .... people don't say things like that to irritate you. Sometimes they just don't know what to say and possibly think they are encouraging you. My response has simply been, "I'm not brave (strong, whatever) I have NO CHOICE and sometimes add (if I want to live). I understand totally why it irritates you and must say I get tired of it, too. Fortunately, most people aren't in our shoes and they have no clue what to say. I just feel they are really not trying to be stupid or hurtful and try to let it go.
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BTW, I love my port. There were always problems finding my veins and it was painful getting stuck over and over just to draw blood. Can't imagine getting chemo that way. In 1987 I had a hickman catheter. THAT was a pain. Had to be flushed out at home, had a tube hanging out my abdomen, gross. They've come a long way!! Mine is in my chest above the good boob.
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Thanks Glenna. I will probably respond that way from now on... Maybe they will get it! I know they mean well ( but they don't know it irritates me to no end).
I wish they knew, if they don't know what to say , it is probably a sign to not say nothing at all!
Well, besides that I had 5th TCH treatment today, that is why I am up now because I slept all day! also am havin some pretty strong pain in my lower back and on both shoulder blades, not to mention headaches all over my head?? Anyone else have pain, or is this a sign it is spreading!?0 -
Sleeplessness drives me crazy. During my two weeks on chemo I'm tired a LOT, take small naps during the day, and am up all night. That goodness for this board, Words with Friends, and email. My two weeks off I stay busy catching up on all that I didn't get done during my bad weeks, traveling, visiting friends, etc., and have no problems sleeping at night (albeit with a little help from clonazepam). @ Kristen, I do have some back pain but mostly pain under my right rib cage. I take pain meds when it gets bad but try not to overdo because we know that causes other problems for which we need other meds. Will have a PET scan in June so will find out soon enough if the pain is anything to worry about. Headaches can be stress related. Are you by any chance under any stress? I don't know about "all over" your head though. Pain is a SE of lots of treatments. If you haven't already, read through your list. It may ease your mind!! When are you due scans?
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I agree with Glenna, people actually mean well when they say things like that and are not intentionally saying something to upset you. To them, I am sure you do appear to be strong because they are probably thinking they themselves could not deal with it....but they could if they had to, they just don't know that. I have never felt that I was particularly strong, but I do feel that having to deal with cancer makes you a stronger person, but you don't realize it until you are actually there and have to deal with it and all of a sudden you are doing things you never thought you were capable of doing. I said I would never have chemo and here I am doing something like my 8th one.....also I remember when I was young, like about 14 yrs old, and read about someone having a mastectomy and I thought, Boy, I would never do that, I would rather die with my breast. I am thinking what I am saying probably does not make much sense at all, and that I am not doing a very good job of communicating what I am trying to get out. I think that most people if faced with cancer would do just what we are doing....they deal with it. I mean what's the alternative?....sitting in a corner crying and feeling sorry for yourself and moaning Why me? But know one realizes what it is really like until we are there. When someone tells me how strong I am, I usually say, you'd be the same way . The longer you deal with this the thicker your skin becomes and you will get to the point where a lot of things don't bother you that might now.
When I said my port was in the middle....I meant above my breast, but in the middle, like straight up from the nipple...not in the middle of my chest.
I am going to be so tired tomorrow, but know I won't be able to sleep when I go to bed. It's only a day after treatment and I normally don't crash til two days after.
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Marybe: I do get Zometa every 4 weeks. Onc may change that. Calcium is elevated which the Zometa should be keeping in normal range. He may change Zometa to every 3 weeks with the Taxol. He hadn't decided yet. I'll see him on Monday morning for a check.
I know people say weird stuff. Last week someone said to me they were proud of me cuz I don't lay down like a dog and just die.
Jean
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Marybe, the hospital I go to is a well known respected hospital. NOt sure if I can say there name in this post, but they are good.
But they do not tell me the results. So, the doctor seemed so happy last visit, like she had this wonderful surprise for me but she did not tell me why. Scans,,no I go to Med Records and get them.ust like a csi worker
I can read them and see exactly whats going on. First time I told the doc I had the scans, she got upset. She said I should not read them without her around. Oh brother. I have a question on the abraxane and the hair. Does it grow back while you are on treatment? I hope so!Naniam, They give me pills before my abraxane infusion. Pills for nausea. I'm wondering if I need them. the nausea I experience is pretty mild. The day of the infusion, I'm light headed and tired I think it may be from those pills.
Glenna E ...sleepiness drives me crazy too. They gave me lunesta, it did work, but I was exausted the entire next day. So, I'm trying to sleep without that. Oh boy.....fun :_
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