January 2012 chemo
Comments
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Helen and SuzieQToo - Welcome. And good luck with your treatments.
waitress - A few other things to look into are Biotene toothpaste and mouthwash, which are especially for dry mouths. I also swish and swallow some olive oil twice a day, as recommended by a friend who's been through chemo and rads for two different types of cancer, and I'm swearing by it as I've hardly had any mouth problems and my taste buds have been remarkably resilient. I hope it gets better for you - I have a very tiny bump on the inside of my lip and am hoping it goes away soon!
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Hi all,
Thanks Nancyhb for your concern , due for nexr dose in 2 days and really don't know how I am going to do it. The side effects have just been horendous not one good day. All I do is wait for 8pm so I can take another sleeping tab and move onto the next day... since my onc has said that she got the lump our with clear margins I am so tempted to say no more treatment,,, has any one else does this?? or at least thought about it , if you have done/said it what was the result.. ie how much much did your onc yell at you, or rather what was everyones considered opinion?
and JENN28 I am at cabrini Brighton, and Iv'e got to agree with you. Have rung the breast care nurse three times now, she has got back to me eventually, but shows no interest or concern at all. All she says is see yoour local GP well Iv'e done that, and and that has not been all that much help, like you said GP's don't know about our individual BC journeys.
I think we have claritin here in Australia.. used for colds and flu but have never heard any talk about it being used in any way for BC so will ask the onc on Monday..
However although I whine and whinge every day ( in my head!! ) I cannot get over the fact that some of you and lots of others do this with children.. I am ready to to loose the plot every night as my husband gets home, do not know how I would do it with littles around.
Still trying to work pt from home but not working as well as I thought. Most days my heart races, and I have dry mouth all the time.. take all the stuff I'm supposed too but makes talking on the phone sometimes for half hour at a time a bit trikey!! Sometimes by the time I get off the phone I have to run to the toilet.. have drunk so much water.
oh well on to another day
bye for now Lynne
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Hotlyn: I was told by my Onc that after my surgery he considered me 'cancer free'. However!!! The chemo was necessary just in case one little tiny cell excaped earlier and was lurking ready to start dividing. You don't want that to happen. Once it mets it is all down hill. Perhaps ask your onc. if your dose could be adjusted. When I had my first infusion I had a WBC crash and he adjusted my dose to prevent that.
Hope you get the issues resolved.
Peggy
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Hotlyn, like you I am TN and the only line of defense we have is chemo. Unlike others who are + with at least one receptor, no other proven tx will work for us. We will NOT be given arimidex or herceptin later because they do not work for TNBC. As I understand it, TNBC responds well to chemo, although it has a higher recurrence rate than other BCs in the first 5 years. After 5 years, TNBC has a lower recurrence rate than other BCs.
There is a website tnbcfoundation.org if you want to read more. There is also a great explanatory booklet at http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Guide-to-Understanding-Triple-Negative-Breast-Cancer. There are also other forums here dedicated to TN which include postings from women recently diagnosed like ourselves as well as women whose cancer has returned as mets.
Hotlyn, please talk to your onc. It's not fun by any matter of means, but chemois our only remaining weapon after surgery. Be strong - you are not alone in this. We walk the road together.
Joyce
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Hello Kelloggs,
Thanks for encouraging words. Just a thought of word cancer and chemo brings my spirits down. But thats what it is and I should now wccept it.I am working on it.
All others who are having side effects, I wish there was one answer. we all feel differently and so hard to have an answer.
Thanks
Bela
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To BelaT and the rest....I went for tx#4 yesterday and it was a good day. I haven't put it in my dx (denial?) but I am stage IV. They found multiple pulmonary nodules during my first slew of scans. They were too small to biopsy but glowed on the PET scan. I had a repeat CT chest last week. Yesterday my MO told me the largest had shrunk by over half and most all of the small ones were not detectable anymore! YAY for me! That means the chemo is working. I just wanted to share and give some of you hope in knowing that all the SE's are worth it and a lack of bad SE's does not mean it's not doing the job. At last, I had a shred of good news that I haven't had since October 18th and I am kicking cancer's ass! Thanks ladies for being my support...I love you all!
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Kellogg's- congratulations! That is wonderful news! Have a super weekend!
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You go Kelloggs!! You can beat this! I have two stage 4 friends and one has had it over 20 years and the other is going on 10. They have had to do chemo over the years but they have a good quality of life and are an inspiration to me. Chemo isnt fun but's our best defense right now.
Im only Stage 1 but I have very aggresive characteristics with mine. Grade 3 ,Lymphovascular invasion and HER2+++, Im 47. My doc said I could have a blood vessel carrying a cell in it and thats what this chemo is for so yes on one hand im cancer free at this point but on ther other hand Im not. Just not a risk I want to take beacause even with chemo there are no gaurentees but it's our best shot!!
Of coarse I trust God and He ultimaltly holds my future but I think when we have these medical options we gotta trust our ONC too. I do understand the wondering if I should keep going through this or take my chances also because of the possible damage chemo and herceptin does. We just have to weigh the odds and move forward. I do hope the SE's get better Lynn.
Lynn, I noticed your stage lll A. im wondering what makes your stage that high? Sometimes the stageing confuses me. Anyway, good reason for chemo. I do hope you start to have better days.
God Bless Everyone!!
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Hi Kelloggs,
I am so happy for you. Congrats. you are doing it. Thanks for the post and reply. every one is so kind here. I know we all have to go but I just dont want to till I see my kids grow up and just not painful but its like every one says GOD he knows what he is doing to me
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Shell-seeker,
You are such brave person. I wish you the best. Good luck and fight .
Bela
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Thanks again ladies....we are ALL brave for going through this battle. But you are right, God will see us through. I plan on being around for quite a while! Love and hugs to you all!
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Kelloggs,
So happy for you! It's remarkable how your victory is like a victory for all of us! Bless your heart. : ) -
Kelloggs Great news A report like that is better than winning the powerball lottery.
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kelloggs--that is fantastic news! just keep kickin baby!!!!!
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I have asked my MO about doing DD Taxol x4 2-week cycles versus 12 weekly taxol and he claims that the only center that does 12 weekly taxol is MD Anderson. I see a lot of ladies on here that are getting 12 weekly taxol. Can anyone share with me why they are getting 12 weekly taxol? Did your doctors have any data or research to back up one over the other? I've just heard that 12 weekly taxol is as good as DD taxol x4 but with fewer side effects so trying to figure out why doctors are not all doing 12 weekly taxols. Thanks for any help with this. All I have found on the internet is old research talking about Taxol every 3 weeks versus every week which is not the same.
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CatWhispurrer ,
I am sorry I have no knowledge.but you can ask for it.
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Kelly that is great news.
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CatWhisperer-I will be doing the DD - every 2 weeks for Taxol as soon as I'm done AC (had 3rd tx yesterday). If it's any comfort, my MO said that Taxol is better tolerated and usually has fewer side effects than AC. I was never offered weekly Taxol and my MO is part of Fox Chase Cancer Center in Philly
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Cat my center usually does the DD taxol but I had such a rough time with AC my onc recommended the 12 week course.
I am in NJ and two other ladies I know (diff Drs) also had 12 week taxol.
My onc didn't say it made a difference in treatment, just possibly with side effects.
Hope this is a little helpful.
Laura -
Cat After I finish next 2 biweekly ACs I will be getting taxol weekly for 12 weeks thenonto Herceptin. I am in NJ. From what I read the weeklies are easier on you.
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Kellogg - that's great news, uplifting for all of us.
This is day three after my second A/C infusion, and just like last time, I felt good the first two days and noticeably worse on day three. Not horrible, but tired and blah and foggy and restless. Also, talked to my MOs office today and told them I'd like to get a port installed before the next treatment. That second a/c directly in the vein felt uncomfortable and I kept thinking of six more treatments. I started fixating on my veins blowing. They seemed perfectly happy to get the port in, which makes me wonder why it wasn't offered in the first place.
All in all, doing okay, if I just accept I'm not going to be 'normal' for awhile.
Annie -
Annie - the port is a wonderful thing!
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Hello all, I am in the middle of my A/C treatments & will be starting Taxol in about 7 weeks. I would like to know how long it takes for the Taxol infusion? Also, for those that are going to, or have had both AC & TX which one do you think has the worst side effects?
Thank you, Madeline
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Ajajohn,
From what I understand the AC is much more difficult than the taxol. I am just getting taxol/herceptin for 12 weeks. The infusion takes a while because of the premeds and I had a scary reaction yesterday so they increases my steroids again. Yesterday was my #4, had a great week last week but I feel about to hit a wall right now. Think I am going to be really sick tomorrow. Overall though, I have been tolerating pretty well, I think.
Kellog. You go girl :-) So wonderful to hear your news. -
Kellog, that is great news! Thanks for sharing your dx with us. You are an inspiration with your fighting spirit.
Annie, the port thing creeped me out at first, but now I am so glad I have it. Makes everything, even labs, so much easier and I don't even notice it anymore.
Waitress, I like the biotene mouthwash too, also there is a book they gave me at the cancer center called "Eating Well Through Cancer". It says to mix 1 tsp salt, 1 tsp baking powder and 1 quart of tap water. Rinse after each meal or at least 4 x day. You're supposed to make a new batch each day and it is supposed to help cut down on mouth ulcers and soreness.
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Cat ~ Just "FYI" ~ 4 years ago I had 12 weekly tax treatments at UNMC, an NCI Cancer Center and have read several reports on these boards of others having this all over the country. Some research on these boards suggest that the 12 treatment dosing is slightly more effective than the others. Nearly everyone of the researchers agrees that the 12 times dosing is easier than the every three weeks dosing when it comes to side effects.
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Kellogg - So glad to hear your wonderful news! My biggest fear has been mets, and you give me so much hope for a positive outcome should that happen. Thank you for sharing you story.
Cat - I was slated for 12x Taxol, but was randomized into DD 6x Taxol as part of a clinical trial. I will be getting Taxol every two weeks. I understand, too, that 12x Taxol is more easily tolerated, have fewer reactions, and may even work better, but this is where I got randomized. My husband and I talked about it and decided to take the chance. They're hoping that DD Taxol will be more convenient and just as effective for patients than having to have a treatment every week for 12 weeks. I guess we'll see how it goes.
Lynne - I had thought about not doing chemo, too. My MO has always said it's my choice. My margins were clear, I had no node involvement, my bone scan and lung scan were clean (I have not had a PET or CT scan, and they haven't looked at my brain...yet...) After my first treatment, I told my husband I wasn't going back, but I did. And after the second treatment I thought about not going back, but I will. Some days are really hard and I honestly wonder why I'm doing it if I'm "cancer free" - and i know I do it because the potential for not being really cancer-free is too high. I had an Oncotype of 42, so I have a really high recurrence rate. I hate every minute of this disease, this treatment, but I'm trying to look forward to where I'm going to be in six months - for the first time in years I'm not living in the present, but rather the future.
I'm considering not doing radiation, though. I'm trying to figure out what the point of rads are, if the chemo is supposed to kill whatever is left behind. The SEs of rads, including damage to the skin and potentially my lungs and heart, really worry me. Is it a card I hold onto in case of recurrence? Once it's done I can't do it in the same place again. I don't know...what do others think?
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Thanks everyone for the feedback on 12 taxol versus DD taxol x4 every 2 weeks. I also heard that the 12 weeklies is slightly more effective and less side effects. If so, then that is what I would want to do but cannot find any data or research. Could those of you getting it tell me your Cancer Center names so that I can point my MO to them? He claims only MD Anderson is doing 12 weeklies. I am in the Atlanta area and I think my MO only checked with Emory University here.
On another note, got my hair buzzed off yesterday. It was starting to fall out all over and I couldn't get my wigs trimmed or fitted correctly when putting them over my hair. A nice beautician, also a cancer survivor, took me in her back room to do it. She even trimmed and fitted my wigs and didn't charge me anything. It was tramatic but I feel one more step with getting past this FC.
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nancy b-i'm with you on the rads-i really don't want to subject my heart/lungs and skin to them and would really like to have that option if-and i say IF -recurrence happens...however; wow- your decision....i guess when the time comes i will fret about it while i decide- i don't want to NOT do something that could prevent yet....well- i think you know what i am trying to say since my words are not coming clearly!
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Just a hopeful question
Has anyone found AC #3 easier than #2 ?
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