Chemotherapy for Stage IV
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When my friend takes me shopping, I will definately look into Boost - I have been picking up the Ensure as it is right next to the pharmacy counter - the only other outing I can handle at the moment - picking up prescriptions. I get pooped just getting to the pharmacy counter in Walgreens and grabbing a few things...LOL.
Thanks Karen
Hugs...Low
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ok ladies. tell me about gemzar and taxol. i have markers that have been continually moving up through arimidex, faslodex and aromison. i'm having scans in a month (have to have some dental work done) and then if the scans show progression along with the tumor markers i'll be moving on to one of the two chemos. need some input. thanks so much
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Enova I will be starting my third round of Taxol and Carboplatin tomorrow. I go once a week for three weeks off a week. No SE's other than being tired, but I'm still working full time and able to keep up with house (well not like I used to) My markers are down from 99 to 54 and the breast tumor can hardly be felt (it measured 2.5cm) I haven't had a scan yet but am hopeful for a good report.My onc talked like I would have 6 to 8 rounds....sure hope I can hang tough till the end.
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thanks cathy for the info. your markers are great. mine are around 460. i started about 18 months ago with markers around 150 and nothing seems to be moving me down. hope all goes well with you. keep in touch.
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Hi ladies, im new to this site.. as well as stage 4 metastatic breast cancer. i was on hormonal therapy first now i just started my first chemo treatment of Navelbine 4 days ago.. my body aches all over. is anyone on Navelbine? or have heard of it? I am so scared!!
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Brenna: I'm so sorry you have to join us here, especially since you are so young, but we're all a great bunch !! Don't be afraid; were all here to support you and share our 'experiences'. Many of us have been around for long time, and we continue to live and love life.
Where are your mets? If they are bone mets, yes, you will have body aches on most any of the chemos as they attack those areas. That's my experience anyway. I can literally feel the spots in my bones about day 3-4 after chemo (when the steroids wear off) where the chemo is active. I get by by saying that the chemo is attacking the cancer and killing it and it's dying a horrible painful death. Visualization helps me a lot! I was on "Navy Bean" (what my nurses called it, ha) for 2 1/2 months. The only real problem I had was severe constipation and tiredness and food tasted funny. If you aren't on any pain meds, ask your onc for a light one, take just 1/2 of one and see how you do. Or, try Aleve.
Other ladies? What's your take on Navelbine? I wasn't on it too long, so I might not have had a lot of S/E's
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Hi- The Ixempra thread was started in 2008 with the last post in Sept. 2010. Has anyone had any recent experience with it? The SE seem pretty horrible compared to some of the other chemos. I'm starting to wonder if it is a viable option. Any input would be greatly appreciated.
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TexasKaren:
Actually, my friends have been super supportive. I'm just being hector the projector and thinking ahead of any problems I may encounter since this is the first time on chemo visiting them all (why not worry about what hasn't happended yet because, face it, don't we all need more things to worry about?!!!!
Trese
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TexasKaren:
Sorry, I meant to let you know I was responding to your response of 8/23 (I've been away-yea) about second-hand smoke.
Treso
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Lowrider:
I am so sorry that you went from stable to this. I hope it gets all under control soon. I started chemo in early May when a PET showed that, not only did I have bone mets but, a spot showed up on my liver. I had a positive response after my 1st PET on 6/30. Just had my 2nd PET yesterday and am, of course, worried, worried, worried for no reason and every reason. I'll get the results early next week. So, when people ask me, when will you be done with chemo? My 1st thought is (oddly enough), I'm afraid to be done since I'm responding and, what happens when I stop (I'm thinking that this is a common thought) and then my response is, well....never. I like and dislike the term "lifer" equally!
Hope and hugs, Treso
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Has anyone lost their nails due to chemo? It's happening mostly to my fingernails but, I fear my toenails are starting now, too.
Marybe....I remember you talking about your nails not being right for about two years. Did they actually come off or just grow strangely?
I'm on Xeloda dn Taxotere and I know it's the Taxotere doing it because it happened when I was on Taxol 3 years ago, just not to this extent. My nails are actually lifting from the nail beds and I have to be oh so careful (it's amazing how many times a day one bumps their nails and fingertips). First, I tried taping them to hold them on but, they started to get infected. They are oozing (lymph fluid, I think) and sometimes smell. Sorry for the graphics but, I don't know what to do with them. I often wear gloves but between the hot flashes, my scarves and my gloves, I can't take the heat from my head and hands!
Does anyone have any suggestions?
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Treso, A few of my nails came off, and my podiatrist removed some of my toenails...think one I pulled off myself....it didn't hurt, was barely attached. Mine oozed and smelled just awful....like rotten meat....I could not keep the cat and dogs away from my hands and feet....disgusting. No antibiotics will help this because it is actually a result of the chemo and will only stop when the chemo is stopped. I found that the fingers felt better when the nail was gone....it relieved the pressure and the nail-bed filled in with this hard callous like stuff until the nail grew back. Most all of them are back to normal, except for my big toenails and thumbs and they are almost there. I will say one thing, it made my nails tough as steel....they no longer split and it's an effort to cut them. Cut them as short as you are able to and you won't risk pulling them off or snagging them on something.
Mary, Re the Ixempra....my onco wanted to do it and instead we are doing Xeloda now along with herceptin because when we retested my tumor status they found my HER2 elevated so they are now treating me a + when I was always negative before. I had heard all the horrible SEs that went with Ixempra and was afraid of it, but there is someone who is in Cincinnati whom I only just met when we got together for lunch with a group and for her it was not that horrible.....the thing is we all react so differently. Abraxane and avastin were the very worst for me and I know others who say they weren't so bad. Ihave had very few SEs with anything except for the abraxane. Which makes me think that when we find out this one is not working ( and I am not being negative here, just know the last four treatments have not worked) I may try Ixempra since judging from the past it might not be that hard on me. I am actually afraid of every treatment I go on until I find out how I will react to it.....instead of asking Is this one going to work?, I ask What's it going to do to me?
Re Navelbine.....I got some neuropathy with it, but not bad and was constipated....took SennaS every day. It was not a rough one for me, but alas did not work.
Brenna, Stage lV is indeed scary, but I have been there since 1998 and although it has not been fun all the time, I still have what I consider to be good quality of life. The threads are wonderful for both support and information...
Ejnova, Not to make light of your tumor markers, but last count mine were 3,306.....am I happy about that?.....H___no!, and am I worried about them being that high?....H___. yes!, BUT my onco goes more on scans and I actually feel fine, so I know it is easier said than done, but try not to worry.
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thanks for your note, marybe. and you can make light of my markers. you earned that right with your score. what kind of treatment are you currently on. i actually feel fairly well also. aches . . . but i've learned to live with that. keep in touch
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Right now I am doing Xeloda...1000mg AM, 1000 mg, PM for 14 days and then I get 7 days off.....so far I have completed two rounds. I am also getting herceptin which is a totally new development. I was always HER2-, then I asked my onco to retest me and the cells that determine if you are neg or pos were evidently elevated so now I am HER2+.....this is not common, but I had heard of it happening. It is not necessarily a good thing when you are young and newly diagnosed (I am probably talking off the top of my hat here as I don't know this to be a fact, but it's what I have heard) since it means the cancer is faster growing, BUT in my case it was a good thing because it gave us another option. Even though I think I have done many chemos when I went to see this other onco for an opinion just a few weeks ago, he was rattling off the names of all kinds of drugs....I am sure not all of them are options I would like, but at least there are options. I am almost to the point where I want to do something that will have bad SEs like the abraxane.....it sounds nutty I know, but I have now done four chemos with very few SEs other than constipation and some neuropathy ( not serious, mostly just my toes) and none of them worked. The abraxane gave me SEs that weren't even listed and not only took the numbers down, it shrunk the tumors in my liver.....so I am thinking maybe awhile on a bad one, get things back under control and see where we go from there. Of course, I am not a doctor so this is just what I am thinking and the onco I see now never listens to me. Sometimes this whole deal is just one big fat PIA, but it beats the alternative in my opinion. If I were incapacitated or bedridden or feeling like crap, it would be another story, but as long as I can live a reasonably normal life, I am content to keep doing treatments and trying to find the magic combo that works. As of now, we do not know if this treatment is working, but I am going on vacation for two weeks and do NOT want to know anything before I go.....it could be cause to celebrate, but it could also mean something for me to worry about and I dont want to risk ruining my trip.
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Marybe, you have always been an inspiration on these boards. You've battled this stage IV beast for a long time.
I have to say I agree with your thinking. I just received my 2nd round of Navelbine and have had SE's that I never experienced on just the Herceptin and Aromacin so I've got myself convinced that this must be working better since I'm aching all over and last week after the first one spent my Sunday morning in bed with chills.
Enjoy your vacation and I am hoping you get news to celebrate when you get back.
Marianne
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Thanks Marianne, My onco tells me there is absolutely no correlation between SEs and the effectiveness of chemo, but after doing four with no real SEs at all and having them all fail and then the abraxane where I thought I might just have to go to bed and stay there for the duration if I stayed on it and it was working.....well, makes me wonder, you know. I sure do hope the navelbine works for you also.....claritin helped for some reason when would get the flu-like symptoms with neulasta(chills, fever, ached all over) so I wonder if they would help you with navelbine....it's not a med that would hurt anything so maybe it would be worth a try.
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Hi Marybe,
I was asking about you on the May chemo board! Hope all is going good for you.
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That chemo didn't work for me and then I started a new one so since I can constantly moving on to new ones I guess so it didnt make much sense for me to stay on that thread. How are you doing....done with the chemo or still on it?
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Marybe: Thanks for the response. Good to know that the nail beds won't hurt once the nails come off. There is a lot of pressure. I assumed the oozing and smelling was due to infection but it sounds like you're saying it's just the chemo. I am keeping them as short as possible without exposing the nail bed, tape some during the day and/or wear gloves. What chemo was it that took away your nails?
Enjoy your vacation!
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Tteso, It was abraxane, member of the taxol family.
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Hi Lowrider,
it been awhile since connecting here but I'm back. Sorry to read about your progression, edema and fluid in lungs. OK Mary I was on Ixempra for a few weeks. It did not go well and was hard to stay with my appointments as my platelets were low after a few sessions of ixemp. I was gradually getting bad nuropathy on rt side. I kept dropping everything. Naseau and appetite not good lost 15lbs. Started to get h20 in lungs after 6 weeks on Ixem. Although we can"t be certain its from chemo. Had my lungs drained 2x. Second time my breathing so bad I was hospitalized. Now on 02 all the time. I was told of a procedure to stop fluid from going to lung which I will try in a few weeks.
I was on 47% strength and having all these symptoms so my Onc recommends to change to another one. I was scanned last week but waiting for the comparison on different dates so I dont even know if it was working. At this point its about quality of life and I don't want to be so sick with side eff that I am miserable. What chemo is next I don't know. I have tried 3 anti hormone tamox, avistan cant remember 3rd. none worked now they want to try faslodex>Just yesterday I felt new bumbs on neck I guess progression. cancer sucks thanks for listening0 -
Maureen- It sounds like Ixempra really gave you some horrible S/E. I'm so sorry. I got my 2nd opinion from Sloan today and they are reccomending the Ixempra with Avastin. My options are getting limited so I think I'm going to try it. I've been treating lymph node, bone and lung mets since 3/09 getting Petscans every 2-3 months to monitor. I've had Faslodex (6 months), Femara (4 months), Aromasin,(3 months), Xeloda and Avastin(7 months),Gemzar (3 months), Halaven (3 months- spread to my liver) and Abraxane(4 months) The Abraxane was tough on day 3-6 after treatment but for the first time it stabilized the lungs and bones. But the lesions in my liver are spreading and my onco says the liver progression trumps the stability in the lungs, nodes and bones.So Ixempra it will be. I developed fluid in both lungs with the Halaven but have not needed to have it drained. I started Oxygen then as well. I only use it as needed now and some of the fluid was absorbed naturally. I'm still working f/t so I can only hope it may be more manageable for me. I'll keep you posted. Best of luck with the Faslodex. It was quick to just go in for an injection and not bad with the S/E.
Marybe- I agree with your correlation between S/E and effectiveness. The docs always say no, but I swear my first 6 Abraxane treatments were lousy and with #7 the S/E were reduced. I told my husband I feared it wasnt working anymore. I had my Pet 2 weeks later and sure enough it had spread to my liver.
You are so positive and informative. Thank you for that. Enjoy your vacation!
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Marybe: Makes sense. Thanks. In the meantime, ouch.
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Joey50210:
You posted about a week or so ago about Decadron giving you the mostside effects. How did you determine it was the dex and not th chemos?
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I just got my PET results today and it was stable, still can't see the liver met and no change to my spinal mets since 6/30 and no new bone mets. Yea! I started Xeloda and Taxotere in early May. My onc told me I could stop chemo now. I looked at him with fear in my eyes. So, as a compromise, I'm doing one more round (three cycles) and then no chemo through the holidays. I will also be taking two weeks off instead of one in between each cycle for the toxicity. He told me that we could possibly go back to the anti-hormonals in January. I started with bone mets in August 2010 and did Faslodex for about 6 months but then developed a tumor on my liver. So, this is my first time doing chemo for Stage IV and now I'm afraid to stop. I'm assuming that this is a common worry at this stage (no pun intended, of course). So, how many of you ladies experienced this?
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There is a lady named Kathy who has been Stage IV for 18 years. She checks in each January. I think she is an author. Does anyone know what mets she has? I've been curious since she posted in January since there is no dx or bio informaton.
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Her name is Kathy Rich and I think she may have written more than one book. I do not know where her mets were. Everyone tells me how great I have been doing for all these years, but believe me I aspire to be like Kathy Rich. I think she is India or somewhere now.
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Treso, great news on the scans! I was also scared to stop chemo - one gets so dependent on it mentally as something that kills the cancer.
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I was one who never wanted to do chemo, but now it is just a way of life. My onco told me that people make the mistake of thinking chemo is the enemy, when in reality it is the cancer that is the enemy. If the anti-hormonals still work for you Treso, that is a wonderful way to stay in remission.
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Hey Treso, congrats on a stable PET scan - love that xeloda! Stopping the chemo - hmmm. That would frighten me too, but I presume you can put your trust in your doc? Again, great news on the Pet and keep on truck'n. SUE
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