Calling all TNs

Vlh- you're doing well!

A4ggy, before I signed up for Xeloda, I looked around for a trial and I remember printing out that vaccine trial. I believe that my MO did not encourage me because of the amount of AC that I had received. She was worried about too much toxicity from that family of drugs. If your MO recommended, it's probably not a concern for you.

HockeyChick, I just started my 8th cycle of Xeloda. Originally my MO proposed 4 cycles and then when I tolerated it well, we decided to go for a full 6 months or 8 cycles. I was really not thrilled about Xeloda but it went fast and I was able to keep up my life. Good luck! Please let us know how it goes.

kber, are u braca positive?

santabarbarian, I'm interested in your diet suggestions

Hello everyone! I just wanted to come and say I had my one year checkup on Monday. It’s been six years since I was diagnosed and all is well! I’ve been working out doing weight training with a personal trainer four times a week and she’s also a nutritionist so she has me on a good diet and I’ve never felt better in my life! She’s awesome and I owe so much to her! I’m getting stronger physically and mentally because of her. I’m finally not thinking about cancer every single day!!

All that said, I am having some marital problems. My husband isn’t happy with his job because he feels like he isn’t appreciated enough, but really, it’s because he has to have tons of praise and he’s upset because his boss isn’t kissing his butt! He went behind my back and talked to another guy about a job and it involved moving and it was with a different company with less benefits and way less retirement than he has now, so I told him no way am I moving after finally finding some happiness of my own. The job has been filled with another guy, but my husband still wants to move somewhere else. I’ve ALWAYS given in and moved WHERE and WHEN he had wanted, and frankly I’m tired of building new houses and moving every two years! So if he doesn’t stop only thinking about himself I’m not sure what will happen! I am proud of myself for staying strong and finally standing my ground though!

Sorry, just had to vent!!

Hang in there ladies!! I never thought six years cancer free would come this fast but it has and for that I’m extremely thankful!! XOXO!!

Thanks for listening

Hi All, I was TN in 2003 at the age of 35 and for the last 15 1/2 have been doing good until December when I was diagnosed ER+ PR- Her2-. This is not a recurrence but a new BC.

Anyone know of someone that had TN and after 10+ years get diagnosed with ER+ or more specifically ER+ PR- Her2-? Having a hard time finding someone that has had the same BC as I have.

In 2003 I had 4 rounds of AC and radiation along with Lumpectomy and was Node negative. Last month I started 4 rounds of taxotere cytoxan prior to a double mastectomy. So far the TC has been much easier than AC. Plus I started treatment being much healthier than last time. Last time the stress made me gain about 20 pounds from finding the lump to diagnosis.

Oops! Missed the whole "already doing chemo" part Damn you, chemo brain 😁 Best wishes.

Trish

Mel, sorry to welcome you here to our little club nobody wants to join-- but welcome!

I took a different chemo, so cannot answer you specifically re AC/ T.

What you can prep for: make some dinners for your kids and freeze them, and set up some rides and playdates for the post chemo days that are the hardest... (In my case I began to feel low on day 3 and generally pulled out of it by day 6 or 7). Once you have done the first chemo you will have a sense of your SEs and what your pattern will be. Then you can make sure important meetings etc do not fall in that window. I am self employed and I worked on a low pace from home, but did not push myself. For me the fatigue/anemia from the cumulative effects of chemo was worse than the specific SEs of the chemo. I felt mostly pretty decent until the latter part of the chemo (last 2 doses) when carrying groceries from my driveway to my kitchen door would wind me.

I did not shave my head. And not all of my hair fell out. But I looked like one of those balding men who keeps their remaining hair long (crypt-keeper style) and it looked horrible-- so I cut it off at ear-lobe length and wore a cotton knit smurf hat with my hair sticking out the bottom. Never wore a wig.

I did a fake homemade kind of cold capping, beginning w chemo #2 (bought 4 migraine cold caps off amazon and used them). My hair had already been zapped from being unprotected on chemo #1 but by chemo #6, I had a five o'clock shadow of hair returning. Honestly, as much as I did not want to lose my long hair, it was a non event when the hair fell out. Nothing like the possibility of death to make hair loss into a very small problem!

People will offer to help you. Can I visit? Can we have coffee? Do you need anything? I suggest you have a list -- and make some assignments when it is a person who is solid. I said, " I am sure to need help but can't predict when... can I call you if something comes up?" -- and then I did call the people who had offered to help, say for a ride to and from port placement, or a grocery store run, in your case a kid pick up or drop off... One friend who offered to help me is a great cook so I asked for bone broth. She brought me a huge tureen of organic homemade bone broth and I froze it in small containers -- and it was great to have on hand. Feel free to say "I am too tired for visits... please just leave it by my front door....

I live alone and my kids are grown... I wasn't sure what help I might need and I came up with the solution of having a friend stay w me for a few days post chemo. On chemo day I went alone with a book or my computer and was fine on my own. But day 3-4 I was zonked out. So I had a different friend with me each time, and they came on the evening after chemo day, and stayed for a few days.... My adult son came for one of them too. It was a GREAT solution if you need some help (BUT pick the right people-- those who know how to cook, and who can be mellow and do their own thing if you need to sleep.) It made there be a silver lining to each chemo, when an out of town old friend would arrive to help me. Now is your time to be the recipient of help with no reciprocation! :-)

Hi Mel- Welcome and sorry you are here. I have a similar diagnosis (just earlier stage) and treatment plan. Had my first AC treatment last week and it was harder than I expected but I have been able to work an adjusted schedule (a teacher so cant work from home!) they made some adjustments to my anti nausea meds and will adjust my IV anti nausea meds next treatment as that seemed to be my worst side effect and today I actually felt like myself and had a great day!

As for my hair- I am shaving my head this weekend preemptively since I feel like I would be stressed by it just falling out.

There is a great forum on just AC treatment that I got lots of information about what to expect. Good luck and keep us informed and ask any questions...

Not defined- I had to have Echocardiogram before I could start treatment. It was something new,as is most everything I have done since being diagnosed, but easy and most of all painless! If you let them know where you are sore they try to be extra careful around those areas. I hope you start to feel better. My port still aches when I turn certain ways but very bearable (had mine put in just over a week ago).

Hi Melly-Mel, welcome. I wrote on a healthcare site that my family and friends could subscribe to for updates on me too. Mine was called mylifeline.org I have forgotten some of the details of my chemo time, but I didn’t have nausea, more of a lack of appetite. I recall having more issues from my neupogen injections. My AC infusions were spread out to every 3 weeks because of my sluggish bone marrow. I felt crummy the first week, but normal the next two. Taxol was much harder for me, and that’s when the fatigue really set in, especially closer to the end. I didn’t have a big attachment to my hair, so wasn’t worried when it came out. I found a great wig from Christie Brinkley and just wore a Buff around the house. As for the eyebrows, that was hard for me. I felt like I didn’t look human without them. There is a girl with bLog that shows you how to put on eyelashes and eyebrows. I will go find it and come back.

Hello All

Just checking in , I've been off the boards for quite a while. I finished all treatment in 2016. It will be 4 years this fall. I did well in treatment. Radiation I burned terribly, and had a minor stroke due to my carotid artery having radiation 'scatter' the neurologist said.

At the end of treatment, my doctors were genuinely happy I was still alive, since I was IBC/TN.... Don't google it.

I'm waving to those newly diagnosed, it does get better once you start your treatment plan. It gave me a sense of control.

Sorry to say though i sailed through treatment, my arthritis which was barely noticeable before dx, and during, now has me in pain most days. I never gave thought to the fact that chemo does damage good tissue and you may be left with 'ailments'. My hip gives me serious pain, and sometimes i have to walk with a cane. Overall. yes I'm glad I had everything offered, but long for my former life and mobility.

When I shaved my head I had dry patches, i moisturized with Gold Bond cream. It did the trick. I use Philosophy skin care for all else.

Vent, ask, this is what we are here for.

Val

Val-Glad you are all done, and that it has been 4 years.  My oncologist mentioned that TNs who go in remission for at least 5 years have a significant lowered chance of reoccurrence after that time frame.  I can't remember if she said it was lower than other types of BC or just in general.  Thanks for sharing, and sorry you are having a difficult time with arthritis. 

Thank you for the info.  I guess I still have this stereotype in my head of being on chemo and not being able to or not wanting to eat the entire time.  I joked to my supervisor that I was going to lose some weight on the chemo diet, and get double d implants after this is all said and done.  I have small, dense breasts, so to me it was funny.  The cost and pain of cosmetic surgery was always enough for me to stick with my barely b cups.  

I think my port pain lasted about a week. As for appetite, mine declined, but I wasnt nauseated. I just could only eat about half of what I was used to eating, which wasn’t a bad thing, as I lost 12 pounds. I’m still below where I was when I started chemo, so yay! Some ladies gain weight due to steroids though, so watch out for that. The thing that bummed me out, spicy stuff burned going down, so I couldn’t eat it.

Good to see you, Val. Sorry about your continued side effects.

I see my MO for follow up in two weeks. I feel like I should be making a list of questions, but I can’t really think of anything. Anybody have anything I can/should ask being 3 years out

Flynn-How wonderful that you are NED!  I had to look that abbreviation up Thanks for the tip on Magic Mouthwash. I will add it to my list.  What gender are your twins?  I have b/g, and my son is on the autism spectrum.  I found it interesting how learning of my son's diagnosis felt so similar to learning of my diagnosis.  The fear of the unknown is so powerful.  My son is high functioning now (he was moderate to severe when first diagnosed), he is in general ed, and no longer receives any services. He is amazing. My daughter is amazing too of course.  She is a big part of why he is where he is.   

LoveMyVizsla-I read about the steroids and weight gain.  I guess I will just have to wait to see what my body decides to do.  May I ask who is Vizsla?  Is that who is in your picture?  Congrats on 3 years out!

Well, I don't think that fasting is agreeing with me.  I forgot to mention that I had my gallbladder removed back in September.  Fasting is causing bright yellow diarrhea (sorry if tmi).  I read that with no gallbladder bile is going directly into my intestines, and when I don't eat small meals often, it will cause a reaction. In addition, I now have a headache.  Of course this symptom didn't happen until after I talked to my nurse coordinator. 

My nurse told me today that I will likely be drowsy when I get my treatment.  This was new news to me because I had read that I should be able to drive myself to and from appointments.  I am kind of annoyed that I just learned this, and that it wasn't mentioned in my chemo class.  Did you have a similar experience?  Did you sleep through your treatments?  Also, I asked about Ativan, because it was prescribed to me for anxiety and if I can't sleep.  Does Benadryl work for sleep as well?  I would much prefer to take that than something that is addictive.  

Maybe I need to join a chemo group.  Sorry, not trying to change the purpose of this group.  Hopefully my questions aren't too annoying.