Calling all TNs
Comments
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Hi Melissa,
I have 3 month follow-ups. It was 6 months after final chemo before all my lab panels returned to normal (prior to that Onc said they were very good, but it was not until 6 months that every item was back in the normal range). My experience was that my nails cleared up about 2-3 weeks after treatment and then continued on getting better after that. I had a crazy nail thing on my toe.
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Hi ladies:
Just stopping in for quick hello and to share this information with you:
You can track your food and exercise daily with: http://www.myfitnesspal.com
You can look up nutritional information with: http://nutritiondata.self.com
The nice thing about myfitnesspal.com is it will keep track of what you want it to, i.e.: fat,protein,carb,sodium, etc. You will have a drop down list to select items. When you do something more complicated like a smoothie with 6 ingredients, it will save your items, so the next time, you just have to click it, instead of trying to build it like the first time.
For the nutritional site, it's also nice because it gives you info like inflammation factor and glycemic index factor with each food item.
But the fitness pal helps with keeping a running tab on what you consume during the day. It is a little work the first week or so while you are first getting used to it and building up some specialty food items, but it has a very robust database. Even includes name brand foods, food like Trader Joe's brand, and even has restaurant brands and their items in the database.
Hope you all enjoy it and find this helpful.
Have a great day everyone - hugs to all my support Sisters out here!
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Kazzie61 (Karen):
Hi Karen,
It's nice to meet you. Thanks for sharing with us. We are all here for you!
Was your diagnosis IBC or IDC or both? I was reading your profile, and saw IBC, but then right below it in your signature, I read IDC.
Have a nice evening.
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Tazzy...woot woot happy dancing for you!!
Sorry melissa...did not happen to me so no advice.
karen welcome to our family...may they find your magic potion!!
Maggie
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Melissa- there is a member named "Lago" that was on my chemo thread that had terrible nail problems. I'm sure she would be able to answer all your questions. Just look her up on the member list and private message her. She is very helpful!
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Melissa - I had nail problems, though not as bad as yours. Mine started "lifting" and I ended up just bandaiding the ends of all my fingers as it was horrible if I caught a nail on something. But it does make doing things difficult.
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Hello to all - I have not posted recently as I have not been feeling well - imagine that...lol.
I was recently dx with mets to lungs. My onc started me on Carb/Gem cocktail. I only had one infusion - platelets nose-dived and I could not be infused the following week. I took an additional week off and had a Neulasta injection - Also had a port put in - I had a Carb/Gem infusion last week - I am supposed to have one tomorrow and will try, but know that my blood counts are low as feel awful. In addition, I am on antibiotics as my port site is infected and very painful since the platelets were so low. Darn it all. I just left a message on Onc. office phone - I am seriously considering stopping chemo. PNP advised me last week that they have other "cocktails" I can try. I don't want to try anything else as my quality of life is being seriously affected by the chemo. I do not want my remaining time to be like this.
I pinned my Onc down a few weeks ago - he said he "does not like to hang his hat on numbers", but based on the "aggressive, chemo-resistant behavior" of my cancer, I most likely have one to two years to live. I'm scared, but ready to stop chemo. I do not want to spend three Fridays a month from noon to four, for my remaining time, trying chemo that has not worked so far and most likely will not. Just had to "say" this to all of you before actually speaking with onc. Thanks
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Sherry - so sorry you are having to go through all of this - CANCER SUCKS! Listen to you heart, quality of life is important! (((HUGS)))
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Reality -- so sorry that you are struggling so. Said a prayer that you will be able to make the right decision.
Job Issues -- I've read a few posts on job issues. If you work for a company with 50+ employees, your employer is required by law to participate in the Family Medial Leave Act, which allows you to be off work for even just an hour at a time, up to a certain number of weeks with no reprocussion to you. Your spouse or other family member can also apply at their work to care for you. You doctor's office has to fill out forms from your employer, but it's worth checking into. As a manager, I was told that if I knew of a situation with an employee, I was obligated to let them know about the law.
My own update -- Saw my MO for first time on Monday. I think I will like him. My brother uses him and has complete trust in him. I have a MUGA scan tomorrow, port put in on Monday, then start chemo the next Monday. I will have Cytoxan and Adriamycin every other week for 4 rounds, then 12 weekly treatments of Taxol. Is this standard for most of you? He did confirm what I already knew from my research-- they don't really know how to affectively treat TN except to hit it hard with chemo.
I'm reading lots of comments about Neulasta. What is that given for?
It seems like God gives me a song for certain times in my life. Right after I was diagnosed, he gave me the song "Need You Now" by Plumb. If you like Christian contemporary music, look it up.
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Tazzy - doing the happy dance for you!
Karen - welcome
Sherry - hugs - sometimes, just knowing it is your choice to quit treatment, can make you feel better about it. I'm sure there will come a day when I will pull the plug on mine. It is difficult living by the measure of good hours. I am sure you will make just the right decision.
Annie - why do you have to get dressed? Are you going in to the office?
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Mouth sores reared their lovely heads today - oh joy! -
Hi everyone! Haven't posted in awhile. Been sick for a week, first ran a fever, then five days later get strep throat and now a yeast infection. Started taxol today! They really drugged me up so I was in total la la land all day. Damn steroid is kicking in. I feel like ironing.
Tazzy: congratulations on being done with rads!
Sherry: so sorry about your dx. Praying for you that you can
Find peace with your decision.
Karen! Glad you posted as many of these ladies (sisters) can give you great
Advice. I'm too much of a newbie to this unwanted club!
Maggie: I know I'm late in this but welcome home!
OBXK: I've got the mouth sores too. All along the tip of my tongue. I just eat Popsicles.
Take care of yourselves everyone!
Erin -
Hi everyone,
I thought I'd share a funny story from a woman that I have become friends with over the past few months who went through breast cancer treatment last year. I saw her this week, and she was excited because she's recently been given her new fake nipple (she had MX and reconstruction.) She said that each night she leaves it in the bathroom in the same place and one morning it wasn't there. She couldn't find it anywhere, so off she went on her daily routine. Sitting in a meeting later that day, she pulled out her glasses and put them on the table in front of her, and there it was, for all to see, stuck to the case! I would have loved to have been in that room to see the reaction of her colleagues!
I've had really bad mouth problems through my chemo. Something that was suggested to me by the nurses was putting pineapple juice in ice cube trays and sucking them. This is the only thing that has provided any relief for me, better even than all the prescription mouth washes. Apparently there's some enzyme in pineapple that is particularly good for mouth sores.
FINAL Taxotere next Wednesday and then I'm DONE with chemo. Hooray! Can't wait to get my PICC line out too.
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Thanks to all for your understanding and support.
Hope -so sorry you are going through all you are - darn steroids! If I have chemo today, I will also have a bag of steroids - I take a Benadryl when I get home from oncs. If I don't, I cannot sit still and graze continuously in kitchen. (I make sure there are no cookies, cakes, etc. in my house on chemo day!)
5th sib - Neulasta is given to help rebuild white blood cells when counts are low. Does not help with platelets, but has worked well so far with my white cell count. When I did AC I had to go to oncs the day after infusion to receive an injection. What a game we have to play - they give us one med and we have to take others to counteract the others....
I wish all a peaceful weekend - I plan to join my wonderful granddaughter as she celebrates her 6th birthday party. Last night she asked me when she will be bigger since she is turning 6. I told her she will probably be bigger this a.m. since it will be her birthday.
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Sherry (Reality)
I'm so sorry to hear that chemo is giving you such a hard time! Please consider a different cocktail instead of stopping treatment cold turkey. The thing is, that nobody really knows how or what will work. So you in fact could have many more years to come. Some cocktails are effective and this one just might not be agreeing with you. But if they already prefaced the treatment by telling you there are other ones they can use, they must know that some patients experience bad side effects with the one you are using. If there is a Plan B for cocktails, then try Plan B. I understand about quality of life - chemo is not pleasant to go through and it also affects us emotionally. But out of those 4 hours think of all the time it is giving back to you. Try to find something enjoyable to do during the chemo infusion. Maybe magazines, a good friend to go with you, a nice big bag of chocolate. Something so you can relax a little during treatment. Or maybe a great big doctor approved pill. However, I meet women on here who tell me that their Oncologists tell them they are walking miracles. Also, there are a lot of new therapies to come for TNBC with the new MD Anderson Cancer project. They feel certain it will have dramatic advances early into the project.
Thinking of you so much and wishing you the best week.
((hugs))
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How to cope with and/or prevent mouth sores:
This is what I did to alleviate and head off any potential problem.
During chemo infusions I sucked on ice chips with just a bit of diet coke on it to give it a little flavor.
Every AM, opened a bottle of Dasani Water, added 1 tsp salt and 1 tsp baking powder to it. Shake and rinse mouth with it 3 times a day. Make new bottle each day.
Drink water with electrolytes in it as well to help replenish natural balance. Smart Water was what I had.
Hope this helps you!
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Sherry (((hugs))).......
Thankyou everyone for the welcome...
I would be very interested to hear which chemo treatments everyone has tried & which ones worked or didn't...
I'm seeing the onc on Thursday & I'm pretty sure he'll give me a couple of options...I have total confidence in him but would still love to hear your stories
Thanks again lovely ladies.
Karen x -
5thSib... I had the exact treatment. Started in June and just finished last week! It is very doable. AC was the worse of the two but not bad at all for me. Take your nauseau meds and drink lots! Chew on ice during A to prevent mouth sores. Eat small meals. The taxol was very easy. Did not take any meds at all during this. The biggest se for me is the nails. Right now I am dealing with soar tender lifting nails but hopefully this will clear up soon that I a done. You will do fine. Just keep checking each treatment off and counting down. It helps to get u to the end!
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No one believes seniors . . . everyone thinks they are senile.
An elderly couple was celebrating their sixtieth anniversary. The couple had married as childhood sweethearts and had moved back to their old neighborhood after they retired. Holding hands, they walked back to their old school. It was not locked, so they entered, and found the old desk they’d shared, where Andy had carved “I love you, Sally.”
On their way back home, a bag of money fell out of an armored car, practically landing at their feet. Sally quickly picked it up and, not sure what to do with it, they took it home. There, she counted the money - fifty thousand dollars!
Andy said, “We’ve got to give it back.”
Sally said, “Finders keepers.” She put the money back in the bag and hid it in their attic.
The next day, two police officers were canvassing the neighborhood looking for the money, and knocked on their door. “Pardon me, did either of you find a bag that fell out of an armored car yesterday?”
Sally said, “No”.
Andy said, “She’s lying. She hid it up in the attic.
Sally said, “Don’t believe him, he’s getting senile”
The agents turned to Andy and began to question him.
One said: “Tell us the story from the beginning.”
Andy said, “Well, when Sally and I were walking home from school yesterday .....”
The first police officer turned to his partner and said, “We’re outta here!” -
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Can someone explain whats so great about local recurrence? Everyone post different stories. Is a new primary better or is local recurrence? I'm truly confused by all the stories I read? Also is it true the farther in years from first diagnosis the better?
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Hi All, thank you for your kinds words. I am going to try and catch up.
I'm in the middle of chemo and getting nuelastin shots. I went to have an MRI today and had blood work done because I've been so sick. My white blood cell count was 73k. That's right, 73k. I know, very high. They didn't say anything and I noticed on the way home. Any one else ever have such a high count?
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netty46 I am no expert but local would be better if say you had breast tnc and later recurrence in the breast again as opposed to lung or brain. So much more dangerous.
Bernie I want to see a moose and a whale in the wild. I need one of those wish lists to give me more hope everyday.
Kazzie - Welcome. I'm in the middle of treatment and was never given option except when iy came time for the Toxal, They said I could have Abraxane instead. First 4 were AC. I've had just one of Abraxane and it's been hell. Good news is that it is working.
Reality - 6 is a great year& happy birthday to her. I wish youe strength with the chemo. It's so so hard for some of us.
English Rose - ONE MORE!! so lucky. Pineapple is a tip, I've never heard. I love natural solutions.
How to cope with and/or prevent mouth sores:
-eat a yogurt daily, the good stuff with none of the too sweet fruit they put in
-brush teeth after every meal and any bite of food with a strange toothpaste & brush I am too lazy to look up unless someone really want to know
-gargle & drink baking soda
-vitamins: multi, D, omega 3, flax (going to add krill sometime soon)
They gave me the pink stuff when I still managed to get one under my tongue (is huge). I dab with a q-tip
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Cocker: Thanks for that... printing it off and one for the fridge - great quote.
Hugs to all xx
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Thanks for all the welcomes lovely ladies.....
Is Abraxene a form of Taxol?
I've ordered my wigs & scarves, booked an appointment to get my eyebrows tattooed & bought fake eye lashes (not sure if I'll be able to put them on though! LOL)!!
Trying to make the best of a shitty situation & help myself feel a it better when it happens....
Find out treatment plan on Thursday....hope everyone is doing ok & enjoying the weekend
Karen x -
Hello Queen Kong - my thoughts are with you. So sorry you have been so ill.
To all: sorry I was such a "downer" Thurs. eve. I met with my PNP yesterday. She sat next to me on the bed in the exam room, with tears in her eyes - she put her hand on my shoulder and asked me to please not stop treatment at this time. We hugged, cried, laughed.....
I agreed to try the following - Carbo. one Fri. - Gemzar the next- then a Fri. off, then repeat. All at 75percent drug strength. I also discovered why I feel so awful - I usually have high bp. This time it was 75 over 58!!! I have a jug of water in the fridge that I have to make myself drink each day to try to get pressure up. We did not use the infected port, so that was a relief. My PNP feels that I will feel more like fighting again once the bp is up and the port is healed. We will see....
What really did it for me was seeing a young father getting chemo yesterday with his wife, infant and toddler - I know I am fortunate that I am 58 and my children are adults.
Best wishes to all for a good weekend-
Sherry
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Hello Kazzie - Welcome - This forum is awesome - I don't know what I would do without it.
You are in my thoughts,
Sherry
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Dear Bernie - I am taking your advice of last week - I am going hog-wild for the holidays. I am not spending a lot of money, but selecting special gifts for people - gifts that will mean something to them and to me. I also allowed my 10 yr. old grandson to assemble and decorate my artificial Christmas tree. He did a great job and the cats are thrilled that it is up early. The love to play with the plastic ice cicles. All of my ornaments are cat and kid-proof! Thanks for your encouragement- as I shop, wrap and decorate, I think of you and your words. I am going to make the most out of every moment, holiday, birthday, etc.
Love ya,
Sherry
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Hope - thinking of you today as my steroid kicks in- I have so many projects started and it's only 7 a.m. here. It's ok,though, as I do not have to leave the house today, so it will not matter when I crash around 2 with uncompleted projects all over the house. I live alone with three cats and a dog. As long as their beds are cleared, they are happy - me too! Have a good one,
Sherry
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Thankyou Sherry....
And I'm so glad to read your post & know that you will try some more treatment....:)
Fingers crossed & (((hugs)))
Karen x
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