Calling all TNs
Comments
-
Hi all, although I don't often post I check in regularly.
Navy; Hang in there! I can relate. I was a Navy nurse, met and married my DH and we were career Navy and our son is now a Marine (I now appreciate what I put my parent's through!). He is stateside but still 3000 mi away. When I was diagnosed he came home for a mom fix and we skype frequently. Technology makes the deployments more tolerable. This dx brings the reality of life"s fragility....Please thank him and your family for your service.
Tazzy; congrads on your last rad!
I finish rad on Fri. A little bittersweet after the better part of a year being spent actively fighting this creature. A little nervous about the transition to waiting and hoping for the best. My onc does not do blood markers or any scans unless symptomatic. Does that sound reasonable to the rest of you???
Wishing everyone the strength to have their best day possible..... Nance
PS Hope is there anything you or friends need that we can help with??
0 -
QueenKong - praying and sending hugs.
I started calling Nuelasta - the shot from hell. First one is Saturday. Not looking forward to it.
0 -
txjunebug - are you taking claritin while taking neulasta? I don't remember if it's been mentioned to you or if it just didn't work for you...claritin for the day of the neulasta shot and for about 4 days afterwards helps many of us with the pain from the neulasta shot.
Hugs to you,
0 -
Susan - I had a little melt down today too. I think mine, was from stopping the vicodin I had been on for 4 days to help with the neulasta pain. Took an Ativan and feel better. Hope you are feeling better soon, so that you can get your work completed. We'd hate to see you go through a "blue hen" period
I bought myself a new duvet and cover, along with sheets. It is all white and makes me feel like I am in a grand hotel.
Love to all...0 -
I bought the white bedding last year and I love it!
0 -
Junebug - although some people have a terrible time with the Neulasta shot, many of us don't. I had one after each chemo and had no side effects whatsoever. No bone aches, didn't take Claratin so, everyone is different!
0 -
I took claratin and aleve and never had any problems....also drink lots of water!!!
0 -
Hi ladies,
I have not posted in quite a while, hope you Are all doing well and progressing through chemo and other treatments SE free!
I am hoping to get some expert knowledge. Has anyone had the Essure and Novasure procedures? I am interested to know first hand, what the downtime is and how much pain if any you had? Would you recommend it? Any other useful info you think I should know. If you would rather PM me than answer on the thread, that's fine too.
Thanks for your help,
Theresa0 -
John invited his mother over for dinner. During the course of the meal, his mother couldn't help but noticing how beautiful John's room-mate was. She had long been suspicious of a relationship between John and his room-mate, and this had only made her more curious.
Over the course of the evening, while watching the two interact, she started to wonder if there was more between John and his room-mate than met the eye. Reading his mom's thoughts, John volunteered, "I know what you must be thinking, but I assure you Julie and I are just room-mates."
About a week later, Julie came to John saying, "Ever since your mother came to dinner, I've been unable to find the silver gravy ladle. You don't suppose she took it, do you?"
John said, "Well, I doubt it, but I'll write her a letter just to be sure."
So he sat down and wrote: "Dear Mother, I'm not saying that you 'did' take the gravy ladle from my house, I'm not saying that you 'did not' take the gravy ladle but the fact remains that one has been missing ever since you were here for dinner."
Several days later, John received a letter from his mother which read:
"Dear Son, I'm not saying that you 'do' sleep with Julie, and I'm not saying that you 'do not' sleep with Julie. But the fact remains that if she was sleeping in her own bed, she would have found the gravy ladle by now. Love, Mom."0 -
Hi ladies
Karen your new bed sounds lovely and comfortable and you can't beat pure white crisp sheets. Enjoy. Bet you can't get out of it. I'm missing my jammies and dressing gown in the morning. Have to get all tarted up now in uniform, make up on, earrings and rings etc. The only good thing is I don't have to comb my hair, not got enough of it but everyone of the girls at work say the short hair and color suits me so might keep it this short.
I have been back to work for two weeks now and so far not too bad. Just a little tired and sore but I suppose I have to expect that. I've got the "why is my neck sore", "what is that pain around my port is it a blood clot" and "am I unsteady on my feet this morning" . I'm sure I'm a walking psychopath now. Frigging cancer, never thought of anything like this before I was diagnosed and never suffered with anything.
I can't help with the Nuelasta shots as I never got them here and as far as I know none of the other girls got them either unless we call it a different name.
Thinking of all of you undergoing, about to undergo or recuperating from surgery or pain. Big hugs to all. Annie
0 -
Re neulasta, I was the same as gilly - didn't notice any side effects at all. I had some minor aching but I think it was the chemo.
Gemmy1 - Sorry can't help with that - haven't heard of those procedures... maybe not done in Canada. Hopefully someone will be along shortly to answer.
0 -
Want to share with you all.... I am finished rads - woo hoo! What a lovely feeling not to have to be nuked daily and drive to the facility. As I am on a clinical trial I will be returning every 3 months, but that's OK, I am fine with that.
I suffered horribly with Neuelsta shots... but everyone is different. I didn't know about claritin at the time, and just took lots of T3's.
Love and healing hugs to all xxx
0 -
Hi ladies!
Hope everyone is doing well. I have some questions for all of you ladies. I finished treatment last Wednesday (yay!) and I am now dealing with my nails being swollen and lifting and oozing a puss like fluid (sorry to be graphic). It is 4 nails. My mo said it is a side effect of the taxol :-(. She gave me an antibiotic, told me to use tea tree oil and soak in Epsom salt. I am doing all this but want to know how long this will last? Being out of tx a week I am hoping that once my body starts flushing this stuff out my nails will start to get better? Anyone else experience this with taxol? I have trouble doing much of anything. Even buttoning my sons shirt is nearly impossible :-(. And of course 3 of the 4 effected nails are in my dominant hand! Ugh. Just frustrated that I made it thru chemo so well and now that it is done I am still dealing with this crap. Anyway. The other thing was mt mo said now we just go to 3 month followups? Does that sound like what you ladies experienced i want to be happy treatments done but its scary and i cant seem to celebrate yet.
Any advice would be appreciated.
Thanks!0 -
Hi ladies.......I've been reading this thread for awhile now but never posted!
I was diagnosed with TN bone mets in L5 & 2nd rib back in May.
I had radiation on both spots.
My latest scans have shown more spots on the spine & rib as well as the pelvis, so it's time to start the chemo again....yuk, yuk,yuk!
I'm seeing the onc next Thursday & will prob start treatment the following week.....it seems harder this time around knowing how shitty it is!
Anyway, just wanted to join in & hopefully some advice on treatments might be forthcoming as well as much needed support (((hugs)))......
Karen x0 -
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.
0 -
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!
0 -
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.
0 -
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
0 -
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!
0 -
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.
0 -
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
0 -
Sherry - so sorry you are having to go through all of this - CANCER SUCKS! Listen to you heart, quality of life is important! (((HUGS)))
0 -
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.
0 -
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?
----
Mouth sores reared their lovely heads today - oh joy!0 -
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!
Erin0 -
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.
0 -
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.
0 -
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))
0 -
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!
0 -
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 x0
