Calling all TNs
Comments
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Kad - ask your onc for a magic mouthwash prescription. Many of us on chemo had mouth sores and this stuff really works.
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Michele, yes, the drains are a PITA. I should get the final path report in 5-7 working days, or 1-2 weeks, however you want to look at it. My family left this morning since I'm doing so well, but will come back if needed. I may go back to bed in a bit, or read a book. My IV sites from the surgery are itching like mad, but I'm not scratching!
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JenC - I'm not the only one with crabbiness from the steroids!! I was a mess last night. I have chemo every Wednesday. By Friday, I am a mess. I can't even think straight!
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Kad - I have been fighting mouth sores too. Gilly is right on about magic mouthwash. First I use 1 tsp salt and 2 tsp bakin soda in cup of warm water rinse 4 tmes a day, and then use the magic mouthwash - between the two I am pretty good. You can even swallow the magic mouthwash to get ones in your throat so call and ask them to get you a prescription right away.
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Hello Everyone. Had chemo on Thursday and the day afer shot on Friday. So far I am feeling fine (thank goodness). Sunday is usually my worst day so tonight I am going to make sure I do my laundry for the week. I took Aleve today and it seems to help so far. I had to work for 2 hours this morning at one of our restaurants. We launched our new breakfast menu. I was able to not get too tired even though I stood most of the whole 2 hours.
I am not much help with SE advice. I have been pretty lucky - little SEs. The rough of my mouth gets rough and a little sore some time. But doing the salt waer things helps me by the next day. Constipation does happen but usually on Monday morning and then afer that it is loose for a few days. I am OK usually by the Wednesday or Thursday. Last time - two weekend after chemo I started to get nosebleeds for 4 days in a row. I would be sitting around and all of sudden my nose would start to bleed. But it did not last long - a few minutes (sometimes twice a day). Then it was gone.
Only one more chemo session to go on Sept 30th. Then 1 month off and start radiation. I am starting to look forward to the end of chemo. I don't think radiation will be a big deal compared to chemo. How has anyone else done with radiation and what should I look out for? Someone says that it makes you tired.
Take care all - hope your weekend is good.
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barbasil,
I know there was a thread somewhere that has a website...which helps with treatment expenses. There are two ladies names, Carol and Susan? associated with the website. The original thread may have been removed (broke and...) so I will go searching. If anyone else knows, please jump in. I think you fit their mission perfectly.
I'll be back
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I just PM's grannydukes to ask her about the site. It might be restricted to "lifesaving treatment" like chemo itself..but I think it's worth a try. I also received some assistance from my local Breast Cancer chapter for a medical bill. The pharmaceutical companies also have what's called "needy meds"...you should have heard the old name! But this is the exact reason why these programs exist. Do you have a SocialWorker with your cancer center? They should apply immediately for you for the Emend, and I will do a little research myself to see if they have the program.
back at ya!
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o.k. here we go!
google Emend needy meds...it will bring up The Act Program from the website www.needymeds.org. You can go ahead and fill out the application to submit for reimbursement for Emend. You should also be able to have them pay for the future. If it's reimbursement only, I would try and work with your medical building pharmacy. (I'm assuming there is a pharmacy affiliated with your outpatient Oncologist.)
Would you let me know if you are interested/have any success? I know this is stressful to deal with while in the middle of chemo, so maybe someone in the family can work with you or a Social worker like I mentioned.
Good Luck,
Traci
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kad - I used the Magic Mouthwash that other's have mentioned and there was about a week there it got so bad that I actually had to take a pain pill wait until it kicked in, then do the mouthwash, which numbed my mouth - eat soft food at room temp, use the mouthwash again, eat a few more bites...... your onc should be able to prescribe something. Also, use biotene toothpaste and mouthrinse - it's really gentle or sore mouths.
swanny - radiation was easier than chemo. I was tired, but for me I think it was a combination of going back to work full time and radation. Be sure to moisturize as they say with the lotions they suggest or with a nonscented lotion like scent free lubriderm. I also rubbed fresh aloe on my skin every single night before bedtime. so glad to hear you're almost finished chemo.
The cancer center we went to had social workers that could help put you together with non-profit groups that would help pay for chemo and/or other medications. That is another option.
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kad22 -- sores in the mouth that are painful. We use a formula called magic Mouthwash with my youngest daughter who gets fever blisters inside her mouth. our Pharmacist made it up years ago.. It's 30ml Maalox,30cc Benadryl and 30cc vicous xylocaine. You need a script for the vicous xylocaine. Otherwise you can get the rest over the counter. My daughter prefers the cherry maalox. It will numb as well as dry out the sores.We used it before every meal and at bedtime and as neded for pain during the wakeful hours. Oh as what to use she just used about a tablespoon and swished around in her mouth then spit out the excess. Give it about 10 minutes to completely numb things up before eating.
Constipation Issue - I suffer from this on and off due to high dose diuretics. Of everything I have found that actually works is Colace 100mg one in morning and one at night and be diligent about taking them daily. You can buy it over the counter and its not expensive. It's a stool softner and wont "hit you" suddenly like alot of them.
WIGS - I didnt make it out yesterday to go shopping for one. Once my sister got here we sat at the kitchen table for hours talking. However I suppose I am lucky. We have a beauty salon that has a "Wig Barn" and they give wigs 1 or 2 depending on how many they have at the time free to all chemo patients. I did however order one from Paula's Wig Catalog yesterday. They have a nifty half price sale going on right now for first time buyers. My insurance doesnt cover them either.
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Cathy 559: Are you aware the American Cancer society will provide you a Wig, make up , scarves.... for free? They have a program called look good , feel better and it is great. Give it a try , if you haven't yet.0
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Lynn18: I am glad you are almost done also. Looks like you and I will be healing through the holiday season..... We can do it, right?
Jenn3: Thanks for sharing your experience with your daughter. I hope my daughter will be able to get all her anger out so we can once again be friends. She is really having a hard time coping with this.
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I'm glad you started this thread. I was diagnosed July, 2007 at age 49, and I just passed the three year mark. Oh, how I searched these threads for women this far out. I now think there are many of us, but we don't always log on. I hope more of us who are this far out from diagnosis post their stories to encourage all the others who are looking for survivors of TN. I had a lumpectomy in August, 2007, and then dose dense (every two weeks) chemo, 4AC and 4 Taxol followed by 35 (including boosters) RADs. Diagnosis: State IIIc, Grade 3, 10/25 nodes positive; ER-/PR-; Her2-
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http://www.allholistichealth.com/mag_o7_oxygen_cleanse_180_p/3020.htm This is the link for MagO7. It's a gentle, oxegenated form of magnesium and it works quickly and painlessly. A godsend for constipation. My nurse told me about it because I told her nothing every works for me. You can get it on line or any Vitamin City or VP Discount Store. Maybe Whole Foods, too.
Monika: If you go to the Women under Construction page, scroll down until you see MBJ and all of my pictures are there. Hope this helps.
Pamelajo: You are a riot! I'll remember to use the chemo brain if I ever get pulled over for speeding!
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Sally,
Congratulations!
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Michele: I am so happy your exchange is finally here! Can't wait to hear about your results!!!!
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Sally777: Congrats and thanks for posting! It is so nice to hear from people who have passed the 3 year mark.
Monika: Yes, we can do this! Hopefully by the new year the we will be on the mend and feeling better. I'm looking forward to that.
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So many posts to read, but if I repeat, I appologize.
When actually receiveing Adriamycin, I was given popsicles to suck on to prevent mouth sores. It must have worked because I never got a single sore. I did lose taste buds, which is very annoying.
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Thanks Sally for posting!
I have a co-worker who is in her early sixties now..btw she looks awesome..anyway she is a TN...she is 7 years out now..I know she doesn't come on here so I'm telling her story...She had one breast removed and reconstruction 4 AC chemos..no taxol, no rads...Her lump was 1.1, no node involvement. I try to think about her whenever I get depressed. Just think..even 7 years ago, she didn't get taxol..and now they are finding that taxol works to TN's too...
It was good to find someone like me when I went through treatment..she was my rock.
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Hello all Triple Ns ...... diagnosed -June 28,2010, mastecomy -July, now considering my options.....very, very concerned about chemo.. the toxic, poison and long term effects ..CHF. I have read, many, many, websites about women who take A/C chemo and have a reoccurrence.
Thoughts?
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I took AC/T and rads. 7 years out and no recurrance.
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my counselor is 4 yrs out. tnbc, 1.3cm tumor, no nodes. Lumpectomy + rads. 4 AC, no taxol... there are sooooo many good stories out there.
{{{{hugs}}} for everyone.
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Chemo really is our best chance at kicking this, it sucks, but unfortunately a necessary evil. Not everyone gets ACT, I just had TC.
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Sally - good to hear from you on this thread. Our stats are almost the same!
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So I got the magic mouthwash script today and will pick it up this afternoon!
Question - did anyone get sores outside of their mouths on their lips?? I have about four and do they hurt!! Any suggestions for these?
Only 2 more Taxol to go and NOW I get mouth sores - wtheck!!
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Kad..sorry to hear about the mouth sores...hopefully they go away soon! Great on only 2 more taxols!
Suzmor...yeah chemo sucks but it is doable...You have a choice whether or not to take it...I certainly didn't want to but I did it anyway...you just have to take a deep breath, find out all the info you can, do everything you can to make the chemo easier and just get it done and over with...
Yes tn reocurrence rate is higher in the first couple of years..and that is scary...but that is the facts whether we like it or not..
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Hi everyone, major catching up on all of the posts. I can't thank all of you enough for all of the posting. Sure helps to answer so many of the questions I have and some I hadn't even thought of yet.Had my 4th taxol, 8 more to go.
Congratulations kad22 only 2 more for you.
Swanny- Ask onc about claritan and zantac 1/2 hr before neulesta shot. Only one day of pain with AC.
Titan- Milk Thistle and folic while on chemo? or after?
Weird! When I was first diagnosed so many friends and family were right there including longdistance boyfriend etc. I guess they all thought I was going to die soon and now that I'm still around 4 months later. oh well, I don't know if any one else out there experienced this. Not trying to sound like whoa is me. Just wierd I think. I am fighting this on my own with or with out them. Great to have all of you as support and I hope I can help some of you too!
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For those of you just starting Taxol it has been so much easier on me just like so many of you said.
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Laurajane: We have all experienced the dissappearing friends. We put on the good face to get through the fight and so everyone thinks we are fine because we aren't dying. It's tough, but that is why I am so grateful for these boards and all of these wonderful women who know right where you are at and what is still to come. This has been the loneliest and yet the most amazing journey all and at the same time. I am very grateful for all that I have been given. I am glad Taxol is being easier on you.
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I agree. I am sure my friends would do anything for me but if I don't ask, they don't do anything. Like some of you, I am single with no family in the area. I took care of my mother for 10 years until she recently passed away. My friends started to fade when I started to get tied down with mom. I was surprised no one offered to come over and help and just give me time off away from my mother. When I did ask, they would do it but then I would not hear from them for a long time. Kind of the same with BC. They stay away if they can - some of them check in with facebook. Lonely is a word I am use to. I do have 2 good friends that call all the time and one who lives in the area and usually comes over on the weekends. If I did not still work I wouldn't know what to do with myself. Guess that's what I get for never getting married or having a family. Sorry to be so down today - I have not been taking my anti-anxiety meds and I am a little down in the dumps.
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