Calling all TNs
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Laurajane.....I'm 3 out of 17 nodes positive and Triple negative. My onc said she expects me to be around a long, long time! Dx May2009 Yep, still here
Hang in there, girl. And the PET scan is a piece of cake. Waiting for the results however, suck.
Navy
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LJ - so glad to hear from you! Rest up and take care! You will be around for a long time if all of our prayers and thoughts count for somthing!! ;-) (((HUGS)))
Question to those who have had reconstruction surgery with silicone implants - has anyone had this and where do I go for more info.? Do you really need to have surgery every 7 to 11 yrs after each surger to replace them? My surgery is in December and am now trying to get some info. on the matter! Thanks!
Kelli
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Hi Ladies,
Did anyone have bad mouth sores, especially lips ( inside ) and lips swollen like lifeboats ??
My throat hurts, cant swallow properly..drinking and eating are an act. I still keep taking my pain killers aevery 6 hours for the leg pain.. but right now I think my mouth is the worst.. What did you do for the mouth pain ?? eat ? drink ? I am using a pink liquid that i have to put i my mouth 4x per day for the mouth sores..but I dont think its working. Anyother suggestions ?? Since Ive had the Taxotere i've been doing nothing but crying... mix of frustration, sadness, and pain. Im an absolute basket case. I have 2 more Taxotere sittings that I am now dreading because of the pain that follows 2 days later. Any help yal could give me as far as eating and drinking during taxotere treatments, would be greatly appreciated.
have a great week ladies!!!
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Hi Monisch - I had mouth sores too. What I do, starting with the day of chemo, is mix 1 tsp salt and 2 tsp baking soda in cup of warm water and swish it in my mouth at least 4 times a day DO NOT swallow it. I also had the pink stuff, my onc nurse calls it magic mouthwash. That I use after eating. I rinse with water first (or brush if I can) then swish and swallow it. That way I get it on my throat and I think it helps my tummy too. But check with your Dr if you can do that. Also I keep chapstick or vaseline on my lips.If I follow this religiously I am pretty clear of sores. They do suck real bad so I hope you can get rid of them. Don't eat spicy food either that can irritate. I got bad leg pain too, just took tylenole for that. And the crying jags...OMG...I get them all them time. I am taking Taxol, but sounds like we are having similar issues! ((hugs)) Barbara
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monisch - I also had taxotere and it does make you miserable! However, just keep going I promise there is an end to chemo! You need to call your doctor or nurse about your mouth sores. I had them but yours sound really severe. You don't want to not eat and get weak. Are they giving you benadryl while your having your chemo. It seems to help with side effects.
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hjhfheidi: Well said! Everyone does have a different comfort level. Supplements and organic can get expensive. It's all about being in tune with our own bodies and doing what feels right for us.
FOR THOSE OF YOU STILL DOING CHEMO: There is a great couple of cookbooks for cancer patients with food solutions to make things taste better, help with nausea, mouth sores etc. You can find her on Amazon by searching for Rebecca Katz. Great recipes for all cancer patients and great recipes for life. I still love and make some of the stuff in her cookbook. I have mine loaned out or I would give you the name of the one I have. You can also find some of her recipes for free on line. They also have some great low sugar dessert recipes in there. Brilliant book.
Sugar: Don't feel guilty about apple pie/crisp. Whenever you add cinnamon to desserts, it lowers the sugar rush and makes it easier for our bodies to digest and therefore healthier! I add it to everything sweet now, even chocolate!
Laurajane: My friends mom has been battling cancer for the last 20 years. She is still doing well and is alive and kicking and she is in her 70's. Don't let some uneducated surgeon tell you otherwise. There are so many more woman surving cancer then there are those who are dying from it. Get yourself the best oncologist you can and someone who is very familiar with triple negative cancer because many are not familiar with it. Heal up and stay strong and know that you have an army of women here who have your back!!!
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kad22: I had a one side MX with augmentation to the other side so they would match. I still am waiting until I do nipples and aereolas. Mine look incredibly real and natural. Go to Breast Implant Sizing 101 and speak with Whippetmom as she is an expert in these things or PM her. Also, go to Exchange City where all of the women are in the expansion process and waiting for the exchange to implants. It's not for everyone but it's a great place to get information. I went there months before my MX while undergoing chemo and it's a great group of incredibly supportive women.
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Hi Barb and Tiffany,
thanks..... yeah sounds like we are having similar issues.... I hate this.
My mouth is so painfull... I have just about everything here that you can possibly use to lighten the sores.... cant even get a normal spoon in my mouth... using teaspoons. And I slobber when i try to drink normal... the fat lips... geez and women pay lots of money to get them like that...go and figure. Guess a straw will help that situation some. I also discovered jello is wonderful.... goes down nice and easy and its cool. Tiffany .. I have noidea what they give me just before they hook up the taxol.... but the last time I fell sleep during the eintire 1 1/2 hours of my chemo sitting. I dont think they know what Benadryl is in Germany either LOL.
Im hoping that this situation doesnt last the entire 6 weeks now..... or when does relief come in ??? after the last chemo and if so how long ?? will i be able to enjoy xmas.. eating ????
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Laurajane: I am happy to see your post. You are still in my daily prayers. (((HUGS))))
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Good morning ladies,
A week from today I will have my BMX . I like the BS and the PS. Hopefully I will do alright.
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hi everyone... been very busy. Also had a couple health-related things going on... looks like everything will be OK.
Just wanted to say that I tend to agree with MBJ re: supplements. But Heidi (and others) have a good point. I get that organic is $$$. I also get that not everyone can afford to buy only organic. So... I would urge *everyone* to try to avoid the dirty dozen unless organic and to buy the "clean 15" as conventionally grown to save $. At least consider it... JMHO. (With that said, you do what you can and let go of the rest....)
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MonikaV: Liking your surgeons is half the battle! Once I found a team that I loved, I had full confidence in that they would do a great job. Prior to finding them I was in a complete funk and panic. You will be fine and I wish you well. Please check in and let us know how you are doing. Hugs.
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Monish, just before I had my chemos, they gave me a bag of Benedryl. It zonked me right out. I asked them to cut the dose, and it still got me. Then I asked them to cut that dose in half, and with 25% of what they were giving me, I could stay awake. The last TX, the nurse started up the iv, and I knew she had miss measured immediately. I asked her how much she put in, she said "The normal" I could barely stay awake to tell her she should have looked at my chart because she over dosed me. I had to call someone to pick me up after TX because I was so out of it.
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monisch- ask them if they are giving you some type of steriod or antihistamine.
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MonikaV- You will be surprised how well you will do with the BMX don't get me wrong it's surgery and it's not a piece of cake. After the first week it gets so much better!
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Monish - My lips were not sore, but my mouth sores were terrible. Even soft foods hurt!!! I would take a pain pill wait 45min to an hour then swish the pink stuff and swallow - then take a few bites of food, swish the pink stuff take a few more bites and then gave up. But.....by swishing the pink stuff every few bites and with the help of the pain pill I was able to get some food and hydration in. My onc told me that the mouth sores would come and go with my low WBC counts - he was right. (((hugs))) I hope you feel better soon.
heidi - thank you for your post - I always like reading what you write.
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Hello Everyone.
Just wanted to say that I went and saw Secretariat this weekend. Good movie and I would recommend it.
Hope everyone is doing well. Take care.
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Ok..I had taxol..is taxotere (I've heard it called taxoterrible) better than Taxol..what is the difference? Sorry but I'm freaking...I guess I wish I could have had taxotere rather than taxol if it would make a difference.
Monica...sorry about those mouth sores..do they give you ice chips or anything during infusion? If not..ask for them.
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Titan: Taxol and Taxotere are in the same family--From what I understand they pretty much work the same way.
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My onc used taxetere because she said taxol can have more side effects. But otherwise they work the same.
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Hmm...OK....I had very few se's from taxol...(except for the nurses watching me like in a death watch for the first 15 mins so I didn't go into analphyic (spell) shock.....it was very easy...I guess..except for muscle aches and that wonderful intestinal fun.
Ah well..chemo sucks no matter what you have to take....This may be shallow of me..but deep down....I was always just amazed that taking a drug into your vein could make you totally HAIRLESS....it's just freaky when you think about it.
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hair folicles are fast growing cells - just like cancer
so hopefully when I lost my hair, they eradicated any other buggers floating around
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Let's hope so! Chemo sure did a good job with the hair situation...Did anyone watch the video on u-tube that someone posted on BCO of the chemo eating the cancer cells? I just watched it and cried...it was totally amazing...
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Titan - where is it?
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Swanny- did I ever mention that my great Uncle Louis trained Man o' War? I donated a park bench at the Man o' War Memorial in the Kentucky Horse Park in honor of him. (Secretariat has some Man o' War bloodlines).
Just spent a great day in PA carriage shopping and having my pairs pole converted from a yoke to a crab (I know--- horse lingo). Had a fantastic lunch and then stopped by my son's apartment on the way home. He's so busy with his new job that I hardly get to see him any more :-( even though he's only an hour away.
I'm bushed and I have the rest of the week scheduled to teach so it's off to bed for me.
Monisch- wouldn't a nice cool all natural fruit popsicle feel good on your mouth? I loved them during chemo (had taxotere but no real SEs) cause they covered the metallic taste and moisturized my mouth a bit.
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Titan, someone told me that taxotere was a little less harsh than taxol. They gave you taxol because they know you could take it -- I've noticed here that when taxol gets to be too much, oncs have backed off and tried taxotere. I was on taxotere. I was given carboplatin and taxotere both at once, so I have no idea really which SEs were which, except for taxotere -- which caused me some neuropathy, which in October still vexes me after having my last heavy dose of both on June 8th. Boy, it takes awhile for this stuff to work itself out of our systems eh??
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Yesterday was just an all around crappy day. Never got sick enough to vomit but just felt icky all day. Food was an issue, nothing tasted decent, rest was an issue, couldn't settle, bathroom was an issue, no diarrhea but frequent, multiple trips with extremely soft stools (I didn't do the Mira Lax at bedtime last night or this morning so hope I don't go the other way!!). Just a generally bad day. Not horrible but not good either. It was day 5 after my 3rd A-C treatment.
I find I can't let myself get hungry because if I do, I get sick. I am not a snack a lot person. I eat my meals and that's about it so this eating mini meals is hard for me to get on to.
My only relative with breast cancer is a 1st cousin and she had BC 10 years ago. After her 3rd treatment she quit the chemo. She had a mastectomy so didn't do radiation. She told the Dr. to screw it she wasn't living her life feeling like crap until she could get through treatment. She has not had a recurrence in 10 years. I say she's just lucky because she does not follow a diet or exercise program and she puts any kind of bad food in her that she wants. She eats and drinks whatever she wants and pays no attention to "healthy" anything! I don't know what her actual diagnosis or hormeone status was and I don't think 10 years ago she did either.
Miserable as I am, I am not quitting treatment unless when I get to the Taxol part I can't do it and I plan on always continuing a low fat diet and exercise (as much as I can with the arthritis I battle) because studies have shown it can reduce recurrence in TN's by 60%. I like those odds.
I'm so scared of the Taxol (although my Onc. indicated it may be a generic like paxlitaxel which I'm sure isn't spelled right) that I can't hardly shake the fears. He also said mine will be a lighter dose given once weekly, over 12 weeks and they will pretreat with Benadryl, Tagamet and Decadron. When I first started on these boards online all the talk was how much easier Taxol was then A-C and now I can't read anything much good about Taxol at all. It is scaring the crap out of me. I HATE BREAST CANCER!!!!!!
Juanita
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Jawatrlily: Sorry you're suffering through these ailments. Chemo IS crappy, but we know it's highly effective on most triple negs, so stick with it -- You can do it!
As for weekly taxol, I did it and I found it be very, very, very tolerable. I almost felt normal on it, except for some nail issues, mild abdominal gas, a bit of a bloody nose on occasion and a little less energy. All round, much easier to deal with than AC. So don't think the worst, you may have a similar experience. I'm keeping my fingers crossed for you.
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(((((Juanita)))))): I am so sorry that you are in the midst of chemo because it sure does suck. In the cancer cookbook I mentioned a few posts back, she recommends three cures to make food taste better. Adding sweet, adding citrus or adding salt. She goes into lengthy detail how chemo changes our taste buds temporarily, and so we need to add these things to our foods to be able to taste them properly. It worked everytime. I couldn't do the small meals either, so I kept all fruit popsicles in the freezer, raw nuts and fruit, yogurt, carrots, celery, anything to graze on and I also pre-cooked a huge pot of Rebecca Katz Magic Mineral Soup (free on line-do a google search). Lucky for me my husband cooks because I was never hungry but once he put food in front of me I wolfed it down even though later I felt like crap. I ate lots and lots of eggs. Couldn't get enough of them and my DH thought I was crazy. BTW: Upping your Vitamin D3 combined with Vit K1 can greatly help with arthritis. It runs in my family and I find that it lessons it to a great degree. Very inexpensive supplement and us BC gals seem to all be low in it. Hope you feel better and I wouldn't recommend stopping. Be strong, get through and we will all be hear to help you on your way. Hugs!
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I highly recommend reading this! It really makes you wonder who has your back and who is just out to make a profit when it comes to breast cancer:
http://www.huffingtonpost.com/samuel-s-epstein/the-breast-cancer-unaware_b_754641.html
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