Chemotherapy for Stage IV
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Louise, I had the cmf drugs in 1987-88, the first time I had bc. I had adriamycin and vincristine with it as well. I did chemo every week for 16 weeks alternating one week only the 5FU, the next week the other 4 drugs. I thought the m was methotrexate but maybe that is the same as xeloda ?? I did lose my hair but not sure which of the drugs did it. I was tired all the time. This was before they had neupogen, procrit and neulasta so my WBC and rbc counts were messed up. The good news is that I was cancer free for 20 years before recurrence in 2008 so it was worth feeling crappy for 16 weeks! I would do it again in a heartbeat. I always think we should be as aggressive as possible in this war against cancer. I don't ever want to have to look back and say "I wish I would have . . . "
I also was on tamoxifen for about 5 years and sometime later did Femara for 5 years. Soon after I stopped Femara was when bc came back in my lung. So .... Of course I wish I had never been taken off the Femara.
I, too, thought I was going to die .... Then my sister forced me into going to a support group that I did not think I needed. I met people like MaryBe and discovered that having cancer did not mean death. Now I have this site and though I don't post every day, I do go to bed with my iPad and get so much support from all you wonderful, strong, funny, brave women. Thanks so much, everyone!0 -
Laurajane: How are you doing?
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My lobular bc returned a year ago after 8 years being cancer free. Bleh! I had seen an earlier post that said bc does not make you thin. I guess I'm an exception to that one because I've lost 50 lbs. over the past 8 months. My stomach is surrounded and filled with cancer and there is also involvement in the bones and liver. I've had CMF during the initial dx followed by tamoxifen and Femara for 5 years. Upon recurrance, had Taxol/Avastin but progression in the liver led to Xeloda for the past 8 months. No side effects from Xeloda and Zometa. Onc. is concerned that Xeloda is not knocking down the cancer in the stomach and wants to switch me to Doxil, but there is a shortage of that chemo and no new patients are being able to start it. So....on to Navelbine, just hate the idea of weekly infusions again. I feel oh so fortunate that I have no pain or fatigue, just have to eat small and frequent meals. I've travelled extensively over the past year and just dumped the expense on credit cards! You never know how long you might have while feeling good so I say, "Go for It" and grab all the fun you can. I wonder if anyone else out there has been refused Doxil because of this "shortage"?
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See the thread talking about drug shortages recently. We all need to get extremely vocal and work with our oncology clinics and send letters, etc to the companies, our congressmen, and get pro-active! We've not had declined drugs in Abilene, but they are getting harder, and more expensive, for our clinic to find. This has to stop. It's all about profit and not about patient care. There is a subcommittee of the health and human services department that was formed; I'll try to get senators/congressmen's names for everyone to send letters to that are being affected by the shortages.
GOOD NEWS!!!!!! After four months on Avastin/Abraxane +starting Xgeva, my scans last week showed "dramatic improvement in the appearance of metastatic bone disease", and the CT scan showed no organ involvement still. After failing on my first three chemo's since my recurrence in Dec 2010, you can imagine the stress I was feeling, even though I've felt that this chemo was working. That ever-present sword that hangs over all of us. I hope I can stay on this for many months as some of you have done; but I will take whatever time I can get. The hair is still just slowly falling out... I may be bald by spring. GOD IS GOOD, HOPE IS ETERNAL, and PRAYER WORKS
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TexasKaren: Fantastic news! Hair, schmair. let's get rid of this cancer. Okay, so, I am vane and don't like not have (much) hair either. I do, however, like my hair pieces (with scarves). Sometimes, I feel like long hair, sometimes shorter and curly. It keeps people guessing. How did she grow her hair overnight?!
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TEXAS KAREN - Yippee!!! That is great news! YES, lets get the info on fighting these drug shortages...jes makes me really 'twisted' to think it's all about profit and not health care!
N I agree with Treso about the hair. I'm still bald, but it is growing back....very slowly...ugh. But, amazingly, I don't mind. I love the easy/peasy no time involved, in getting ready to go out. Have a dozen hats/caps/scarves, slap one on and I'm off. Wig n hair piece I bought early on, never wear. Too hot, when my hot flash hits, off with the hat til it passes. Too hard to do with wigs. If I wasn't plagued with the hot flashes I'd prob do a wig, but, not to be...oh well. It gets up to 115 degrees in the summer here, so I've even been known to dampen a white cotton dish/bar towel, slap it on my head and then a cap...talk about STRANGE LOOKS...LOL..I jes keep :-D!
RAKULYNDA - Sorry to hear about having to do the Navelbine...but whatever works...ya gotta go for it, or try it at least. And I am with you on the 'jes go for it' tude. Keep it up!
MARYBE - How are you doing?
Positive blasts n prayers to all you lovely ladies!
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MemaSue, Thanks for asking, I am doing fine......even though both scans showed progression and as my opthalmalogist was pointing out to me Good grief, that is the size of a grapefruit ! when I was telling him about the dimensions of the largest tumor in my liver. Since there was progression, I am now off Xeloda and also we are not going to stay with the herceptin. The HER2 was not elevated all that much, but it was above normal so we thought it was worth a shot, but I myself do not think I am actually HER2+. So the only treatment I am actually getting now is the Xgeva injection once a month for my bones. But really, I feel fine. Hair is growing like a weed and all those bald patches I had from the halaven have filled in and I hope to keep it for awhile.....at least until after I have some Christmas parties.
Rakulynda, Navelbine was not a rough one for me.....I think the only SEs I had were constipation and some neuropathy, but not bad . I think from what I have heard it is easier to tolerate than doxil. My onco told me that he has patients on doxil who have had to wait on treatment because of the shortage....and he has people on a waiting list to start on it. I don't think it has anything to do with money or the drug companies.....I think there is just too much demand for the supply.....like that one year there was not enough flu vaccine to go around.
TexasKaren, I am thrilled about your good news. That combo was the one that really knocked me down, but as I have told everyone, it did work and I am very pleased that is worked for you and that you are finding it tolerable. Improvement is always good, but DRAMATIC improvement is great.
Glenna, What treatment are you on now.....if I go back a page to look to see if it's there, I will lose my post. Xeloda is not the same as methotrexate, although you can do either in pill form.
I have no idea what I will be doing next. I have had all my current info plus treatment notes from last two years sent to MDA and am waiting to see what the onco thinks there and am going to go back there if he feels it necessary to see me or wants to run any tests. My onco here actually said he would be interested in seeing what they have to say.....last time I think it bruised his ego that I went elsewere for an opinion. Now I think he is stumped since nothing seems to be working. I know I can't just let things go, but I am enjoying my time off...although I think I am stressed and not admitting it because I have been eating like a pig.....odd things, like tonight I wanted bologna so I ate two sandwiches and I really am not one who eats much bologna......that's like the hotdog kick I went on when I was doing steroids....but I am not on steroids now, just eating like I am.
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Hi marybe
Have been looking out for you and wondering how you were getting on ...I was getting very worried as you had not posted in awhile ...really glad to see you are in the land of living and still positive ...I always admire you how you cope with each step ...and hopefully something will turn up for you this time too you deserve it ...hopefully MDA will suggest something so enjoy your freedom for a little while...sometimes when you are not on anything the cancer gets such a shock it cant cope and statrts to shrivel up so please god...fimgers crossed and take care and keep posting I am sure I am not alone in saying that you are great support and give us all such hope ....hopefully we can give you something back...take care much love me xx
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Marybe: Good to hear from you; I was thinking about you too like Ruth. Glad you are feeling good and enjoying your 'vacation'... and I envy your eating; I've got 'chemo taste buds' and nothing tastes right. I hate that, because I've always LOVED food! LOL Praying for good news from MDA. Despite my excellent results on Avastin/Abraxane, the cancer spots in my neck (cervical discs) are causing me some unstability and making my arm/fingers numb and tingly. I may have to do radiation to my neck, which isn't bad (radiation sure helps kick the cancer and stabilize the bones), but that close to the throat, I know I'll have that terrible esophigitis again.... dread. But, we do what we have to do, don't we ladies!
Need some prayers: one of my original group of 'sisters' from Oct 2007 Chemo Girls has another lump in her breast. She is young and was 7 months pregnant with her first dx. Please pray for her!! And, one of my good friends here is going on hospice for ovarian cancer and is in denial... I'm trying to help her, but it's hard. She has no one except her boyfriend and me.
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TxKaren, I am so sorry about your friend, but at least she has you and her boyfriend.....guess there are some out there with no one and I don't see how they would deal with it. I am really fortunate to have a lot of good friends. As I said earlier, hospice is not as bad as I thought it was...or maybe I said that on another thread, I am sort of here there and everywhere when it comes to posting. Anyway, this is the friend I have written about and she is doing so much better now that she is home from the hospital....when her husband told me they were talking to hospice, I thought uh, oh, this is it and I have said many times, NO hospice for me and shudder when I hear the word. But with Cyndi they are coming to her home and they are not just there to keep her comfortable.....she is still taking her BP med and antacid and something else and she is getting a little help with exercise and they get her into the shower and such and she IS improving. I always viewed it as one of those no turning back, end of the road situations. So I hope your friend does OK....there is always hope, you know. It is easy to be in denial.....often easier than the truth. Would any sort of stretching exercises help the neck? I find it is so easy to slump and it's really not good for back or neck.....can hear my mother "Marybe, Stand up straight" The taste buds do come back.....that was the lst thing I noticed on Abraxane, lst could not taste salt, then seasonings and sweet was the last one to go.....then everything tasted like nothing. I hated that.
Bonnie, That would be absolutely wonderful if my cancer would go into shock from not having chemo and start going the other way.....guess stranger things have happened. Odd thing is for the past two days I have felt good in every way, no aches and energy has been really good....am back to my old tricks and staying up way too late at night (after falling asleep watching the tv, that is) . I am going to call and see what the CA 27/29 was today....I am betting 4500...they only did the test because I wanted it done. My feet do not hurt, but they sure are looking bad and I don't know if this is from the Xeloda I was on or a combo of all the chemos and the fact I am on them all day.....they look ancient and what toenails are there look like they have the creeping crud.....little toes have no nails at all. Now I knew that was supposed to happen with Abraxane, but don't know why I have nail problems now.
Sorry if I had anyone worried......don't think you have to worry about me yet though. I asked the onco why I have not had normal SEs with most of the treatments and he said because nothing has been normal about my cancer from the very beginning. So I don't expect to keel over in the near furture. And when I can do, someone will be posting for me, but I am going to make it clear I do not want one of those Marybe is an angel threads.....more something like She's finally dancing the way she always wanted to. I have these dreams of me dancing, hear songs at work that I love and want to jump up and leap around the office, but in reality I have no sense of rhythm and cannot dance.....used to when I would have too much to drink, but those days are long gone thanks to warfarin.....remember when Elaine on Seinfeld would dance?....I could really relate to that.
Have a good day everyone. I am rooting for all of you.
I am not working today cuz the boss is out of town so am in the process of making lasagna.
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Marybe
I love that you are making lasagna and wish I had the tastebuds to taste it!
Maybe we should have a list of us who don't want an angel thread... My atoms are going to be heading across the stars trying to catch up with the ever-expanding universe.
Laurie x
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Laurie, The good news is that the taste buds do return, but alas then so do the pounds.
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OMG.....just got the results of my CA 27.29......6,444.3!!! This is surely a record. I was expecting them to go up, but not 2,000 points and I really don't know what to think. Obviously the cancer is going wild.....I wonder if they will order more scans or if they will even call me about this since I do not have any upcoming appts. They also told me they finally got my records sent to MDA, but don't know what good that is going to do at this point. I am going to email the onco there right now and tell him the tumor markers are through the roof. I just cannot understand why I am feeling fine.....I mean I am glad I do, but why don't I feel ill since I obviously am.
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Marybe: I CAN SEE YOU doing the Elaine dance ! ! ! Haha I agree; if I wasn't a total angel here on earth, why should I be one when I pass?
Besides, my beliefs are a little different, and I don't believe we sit around up there singing hymns for eternity anyway.I don't understand the tumor markers at all. My onc doesn't use them; says they are often not indicative of the real clinical situation. My friend with ovarian Ca's markers have been going down, actually, but there is nothing else they can do for her; mets all over and no improvement on chemo. So?? Do we place too much emphasis on markers?? Don't know, but if you are feeling great, what's the problem? Don't count out any new trials out there; there are tons of new trials coming on line right now.
Hospice here is wonderful. I always thought of them as the 'end' people too, but when M-I-L was on it, was super suprised at not only the little things they did for her comfort, but the emotional and spiritual support they gave ALL of us, not just the patient. They were simply wonderful, and they stay in touch with the family after too. I was going to actually train to be a hospice volunteer until my recurrence..... too much on my plate now, but I would have loved it.
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Marybe
Like WOW with the numbers but you're feeling good so just you keep going. You said before your onc says you're not normal!
Hope you manage a good nights sleep (though guessing it's still afternoon with you)
Laurie x
PS: TexasKaren thinking we should maybe set up a non-angel club ;-)
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I want to be a member of that club for sure, but hope it not in the near future.
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Good news ! (Well at least as far as cancer goes!) My friend from oct 07 chemo girls has a local recurrence in her mastectomy scar only.... scans are all negative for mets!!! I'm so relieved! She can do chemo again, and beat it !!
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Thanks Glenna, great to get feedback, I love this site! I just had a lovely few days in Wexford in the SE of Ireland. The sun was shining and while it wasn't tropical conditions it felt like it for a November in Ireland! Anyway, I went to the beach in Rosslare crab fishing with my two kids and their pals. I brought a flask of soup, crackers and sandwiches and they had a ball. Fishing, races, paddling, searching for the perfect shells etc.. On the beach looking at the kids, I started to think about the future and I just decided that I am going to be there. I don't care what the docs tell me, I want to be part of my families future and I damn well am going to be! All I had to read was CMF in 87/88 and I thought I can do this. Thanks and sorry it took so long to reply, don't know how I missed this one, x L
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Hello ladies! I am happy for those of you with good news! It gives the rest of us hope.
I am starting my 4th chemo drug since April 2010, Gemzar, next week. I'll have it two weeks in a row, then a week off, for 3 months. I also have a lesion on my right hip that is in an area that has been causing pain, so my oncologist is going to send me to the radiation center for that. Still waiting for my appointment time with them, they need to see my bone scan and the x-ray I had of my right hip first.
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Hi Ladies, I have read a bunch of back posts, and would like to introduce myself, I am a 2x survivor, but am here for my sister who was recently dx'd stage IV. It is in her liver. SHe lives in Florida, any one have an oncologist they could suggest for that area? She needs a second opinion. Anyway, my sister's oncologist gave her Tamoxifen for 3 months, there was no improvement and she was told "try alternative". That was that, no Plan B. They said you are healthy for now, enjoy your life. ???? I know I don't want to process the word TERMINAL, but seriously how could there be nothing to do right now...just wait??? I see some of you have been doing chemo for years. Did you wait for things to progress before starting??? Thanks Terri in MI
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Terri
I'm just at the start of stage IV with liver mets too. I am in the middle of chemo and the docs were cautiously optimistic that it would help. She really needs a second opinion asap. Give it a while and the stateside cavalry will be here with lots of support and advice!
Laurie x
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Lol laurie, stateside cavalry.
Terri, there are many treatments for your sister to try (AIs and chemos). Unless she is already having liver problems I don't see why her onc would say that.
She should run to her second opinion and kick that onc to the side.
Your post might get lost here in the chemo thread so you might want to start a new thread. Be sure to include her pathology (ER/PR, HER2) so you can get knowledgeable answers.0 -
My sister is ER+ HER- Thanks
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Hi all,
There are so many threads that sometimes I forget where I have written.
@Marybe, I've been on a chemo holiday since the first of august but will start gemzar as a maintenance chemo on Nov. 30th. Onc says fatigue is the major complaint and that most do not lose their hair. I'm glad of that as my hair is starting to come back after taxotere.
@mom2acat - let me know how you are tolerating the gemzar. I'll be two weeks on, two weeks off, with a neulasta shot the day after the 2nd treatment.
@Teri, when I received my stage IV dx my doc said there were many options available and that I had at least 10 years. I know we are all different with different areas of mets but My onc tried several different treatments before taxotere which did the trick! Your sister needs a new ONC!!!
Got the results of my last PET scan yesterday and am happy to report that I'm enjoying a wonderful relationship with NED ... We've been together now for over 3 months!!0 -
@Louise,
Love your attitude!! Enjoy your kids. Ireland is on my bucket list. My ancestors were Irish (maiden name Mackey). If I ever get over there, I'll look you up! Boston is on my list, too, and a lot closer than Ireland. I'm going there with my DH the first week in May. Nashville and the Grand Ole Opry with my sister and her grandaughter in April! I always have something planned! In 1987-88 my plan was to make memories for my kids. I sure did and now that they're all adults, they would tell you that some are good and some are bad! LOL!!0 -
th anks soo much for youir kind words and yes it did help me a lot .I dont know why i didnt see th epost before today but glad I found it .. thanks
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Hey Glenna
3+ months with NED - way to go!!!!
Laurie x
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Hey Glenna - WOW! Three months, and many many more to come, I know. Congrats! Sue
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Glenna......NED.....What a wonderful way to enter the holiday season. Congratulations!
Terri, WALLED LAKE MICHIGAN!! My grandmother used to have a store there. She lived in Northville and I would spend summers with her. I have many happy memories of Michigan.
I agree you sister needs another opinion. I have been Stage lV for a long long time and know that there are many treatment options out there.
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Welcome back MaryB...sorry to hear ur CA's are so high. It blows my mind, specially since u feel good. Hope u get some solid ans from MDA. In the meantime, guess we jes keep going. U kno that 1st hand...been fighting for a long time and I kno u wont give up fer nothin...u go gurl!
Glenna...wonderful wonderful....I am 2 months NED...get followup scans end of Dec. Am feeling fine and jes KNO my next scans will continue to show NED. My hair growing back too, slowly, nails getting worse, neuropathy in feet worse too. Saw Onco yest, she said could be year for the neuropathy to completely disappear...oh well....not gonna worry, jes thrilled and sooo thankful to be where I'm at now.
Question to all of you out there. I have not had a mastectomy. Started treatment to shrink and kill. It worked. Then October went to Cancer Treatment Center of America...they say "why take breasts when the cancer has spread." OK, I get that. Onco here, yest, said they are still thinking about taking the breast (mothership) as they believe Stage IV fair better overall to do so.
Any thoughts about that??
TerriD - I strongly agree with 2nd opinions!
TXKaren - sorry to hear about your friend....will blast positive thoughts n prayers her way.
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