Calling all TNs

TiffanyF4

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.

MBJ

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!!!

MBJ

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. 

monisch

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 ????

MonikaV

Laurajane: I am happy to see your post. You are still in my daily prayers. (((HUGS))))

MonikaV

Good morning ladies,

A week from today I will have my BMX . I like the BS and the PS. Hopefully I will do alright.

MicheleS

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....)

MBJ

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.

Meece

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.

TiffanyF4

monisch- ask them if they are giving you some type of steriod or antihistamine.

TiffanyF4

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!

jenn3

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.

Swanny

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.

Titan

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.

MBJ

Titan:  Taxol and Taxotere are in the same family--From what I understand they pretty much work the same way.

Claire82

My onc used taxetere because she said taxol can have more side effects. But otherwise they work the same.

Titan

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.

Claire82

hair folicles are fast growing cells - just like cancer

so hopefully when I lost my hair, they eradicated any other buggers floating around

Titan

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...

gillyone

Titan - where is it?

Anonymous

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.

swiftbird

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??

Jwatrlily

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 

Luah

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. 

MBJ

(((((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!

MBJ

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

laurajane

I had my surgery one week ago and feel great. Funny that I was so scared of the surgery and it sure wasn't bad. I get to have a pet-scan next Tuesday and I am praying my BC hasn't Mets. I had this wonderful feeling yesterday that I am going to be around a long time. I've ignored my so called prognosis. I feel better than I have in a long time and truly happy. I have a renewed strength in my battle against this BC. Thanks to all of you for your encouraging posts and well wishes. 

jwaterlily-AC was horrible for me but I got through it as we all did/can. I was beyond terrified of Taxol. I had it weekly also. The most noticeable SE for me was that I developed this insatiable lust for CHOCOLATE. Chocolate bars, cake, hot fudge sundaes, pudding etc. I wouId actually start dreaming of chocolate as I was receiving the Taxol and start planning what chocolate treat I would have after I was done. I even started baking cakes (German chocolate, dark velvety fudge etc) the night before my chemo. This is funny because I have never really been a sweets cravin' kinda gal. I always preferred salty popcorn before something sweet any day. I had 7 treatments. I felt better than I had in months. Although it didn't work for me it has worked so well for the majority of TNBC.  I believe in my heart of hearts it will work for you too!

Jwatrlily

Thanks everyone for your kind comments and advise.

Laurajane, I've never been a sweets person either and if I have any cravings at all it is for salty (cashews but don't allow myself to indulge a lot) but my potassium is low and I take a supplement so that might be why the salty cravings.  I'm disappointed that my Onc. nixed the L-Glutamine for me but I'll ask the chemo nurses too as they sometimes give different advise then he does as they are the ones who administers the chemo and stays chair side for the reactions.  I love my chemo nurses. 

Laurajane, I could just hug the stuffins out of you girl.  I am so glad to see you being so positive and that things are going better.  You are not the only one praying for no mets for you.  Many of us are.  I'm so glad you are taking charge of what you believe will be your outcome, and what you don't.  It's gonna be a great life for you, believe it!! 

Juanita  

monisch

wow  thanks for all the responces.  I had my 10 day cehck up by the Onc.. and tod him of all my SE's. He was actually surprised how I reacted tot the Taxotere, but gave me another med to take the day after the sitting to prepare my body for the pain to come... encouraging isnt it ?. Anyway  still taking my Tylenol, because after 6 hours i can feel how the pain is creaping into my kness and ankels.. absolutly horrible.  As for the mouth sores.. yep still a battle and now he gave me a perscription that the Pharmasist has to prepare himself.. kind of gel that temperaroly numbs the inside of my mouth but generally after 2 days of use, the problem should be solved.  Gosh Im dying for a big ol juicy Steak with Baked Potatoe..... and a Caipirinia  LOL I havent eaten decent in 2 weeks.  For those who get Taxol.... and recieve that once a week.... that maybe the milder dose of Taxotere. I get my dose every 3 weeks.. have 2 more sittings to go.  I guess it takes 3 weeks to get the crap back out ( somewhat ) of the body.  Hey even the Urin has foam  LOL

Ladies  have a great  week   catch ya tomorrow !!!!!

cc4npg

Laurajane: ditto again the above post.  I'm another one who's been praying for you and praying for good results.  I re-read some of the forums I've been to, and there is one lady who had something like 14 or 20 positive nodes, triple negative, and is 22 years out now.  You cannot go by what the doc says, because they're just goin by stats.  Remember... someone has to fall in the good stats and God willing it will be YOU.  So good to feel positive after feeling so down... I know, I've been there.  I hope you have a church you belong to or go to, but if not, I encourage you to find one.