Calling all TNs

I'm beginning to feel like this is my good news thread! Love hearing about the fun you gals are experiencing!

Now it’s my turn to add to Radical’s “good news thread“. I’m 3 years out and doing great!

I saw my MO for my 3-year check, and he was very happy with my recovery and progress. At this time, I am having no scans or labwork done. My MO keeps up with oncology/chemotherapy research religiously, so I have no qualms believing his treatment plan for me is appropriate. I also worked with him at the local hospital in the past, and know he is considered the best around these parts. I did have a chest xray and labwork (CBC & CMP) last year at my 2-year check. When I asked him about this year, he told me that the new recommendations are for no scans, especially PET and CT (no need for added radiation), unless symptoms warrant them. He said that he has never found recurrence/mets on xray, and that clinical exam and patient self -exam and self-report of any new symptoms, are the best ways to monitor for changes. He also wants an annual mammogram to be part of my continuing care. He moved my appointments to every 6 months. I asked him if this was close enough for TNBC? He smiled and told me he wasn’t worried about that, because I had done so well with treatment, and continue to do well. He also said that most of the recurrences he‘s dealt with have been within the 3-year frame, so I‘m looking pretty good. (He admitted that he never says the “C” word - “cured“, and quite frankly, I wouldn’t believe him if he did!)

When I asked about Metformin, he would only consider it for diabetics. However, he did say that research does seem to point towards low-dose aspirin (81mg) as having real promise of warding off cancer/recurrence. Heck, that’s easy enough!

I will also see my RO at six month intervals. With no reconstruction, I have had no need to be followed by my BS once my incision was healed. Today, in fact, is 3 years since the surgery that changed my body and my life. I like to use my surgery date as my cancerversary, because I feel that my surgeon got that nasty beast out, and that chemo and rads were extra insurance against any sneaky lurkers. I know that the docs use the date of diagnosis, probably because it is a standard for all cancer cases.

Now, I am a “special” case, since I also have MS. I have had so many MS- related doctor appointments, MRIs and meds, that I am relieved that I can reduce the BC-related ones - I’m so weary of it all. Others may need the reassurance of closer monitoring by their docs. Most importantly, finding a BC team that you can feel confident and comfortable with makes all the difference!

I had a good laugh at myself when I looked at my notebook during that MO appointment. I usually have a page full of notes and questions, categorized in different ink colors (OCD or anal???), and this time I had 2 lines! Yeah- I think I’m doing okay!!!

To all the gals who were on this rocky road before me, thank you for your support and guidance. To those who are on it now beside me, thank you for your humor and camaraderie. And to those who are taking their first steps, be brave and know that there are many hands to reach out for when you feel that you may stumble. And… always wear clothes that have BIG POCKETS!!!

~ Shar  

shar, thank you many times over for your post this morning. Made my day! It's just what we want to hear. I'll be 1yr from dx on 10/18 but also would consider later dates as cancer free or being a survivor like surgery date 12/2 or actually last day of all treatments, 7/25, in my head that's when it's all done and I'm cancer free and all possible cancer buggers are gone. Will see lots of women just like me at the komen run this sat in Albany ny. Looking forward!

Sweet Spica loving life!

Spica, just wondering why it is necessary to continue to see your RO?  I've not been advised to do that and had only one followup visit a short few weeks after rads ended!  Very curious as to what they check!

Thanks!

Spica---congratulations on 3 years!  I love it when another stage 2b TNBC sister makes it to that point.

KSteve, that is awesome about the 3d tattooing.  Did it take a long time to get your appointment?  I'm sure Vinnie will do a wonderful job.  You are so woth it!  Congratulations to you on reaching the FOUR year mark!

I've been feeling so much better the past few weeks.  I was plagued with fatigue over the summer which I thought was just recovering from chemo, but it turned out I had Epstein Barr virus and walking pneumonia at the same time.  Those issues have finally gone away and I'm doing a lot of hiking, biking, aerobics and good old fashioned housework!  My lawn and house really needed some TLC this summer that I'm just now able to be doing.  It feels wonderful.

Wishing everyone a great day.

Thanks, Everyone!

adagio ~ I remember 2 years, and wanting to get to that 3 year mark, so bad. I wasted too much time wishing for that next year to get here. Try not to. But then...it's easier said than done! How many times have the Gals who have finished treatment said " It really does go by fast", and we silently think "yeah, sure"? Well, you know what? It really DOES go by fast!!! You're on your way, girl!

Run, Lisa, Run! Nobody jump in her pockets...she needs to be light and speedy!

NavyMom ~ Here's a wave back from an old Navy Wave! You're living the life! 

Meadow ~I'm an outdoorsy girl, so every time I see your avatar peeking out of the page, I think Wood Nymph! Sweetly mischievous!

Radical ~ You're are so right - nice to see so many positive posts! It does seem to go in waves, up and down, throughout the year. Talking about avatars...how can anybody not crack a smile when yours pops up? Love it! Has anybody else noticed that seeing bald people is no big deal anymore? Of course you new gals will be sensitive to them - we all were at that stage in our journey. Once you've been through it - the strangeness fades away. But I will say that I really respect eyebrows now - they are the secret to giving expression and character to a face. 

Nettie ~ The MO & RO do exactly the same thing now. MO is male, RO is female, so I guess I like having both examining me. Actually, the last time I saw the RO's oncology nurse (love those NPs - they know their technical stuff, but are "earth mothers" with their patient care.), she mentioned that I could just see the MO, because there's nothing more the RO can really do for me, now. Actually, I was given the option of just seeing my family doc, but even though she is a good one, I like the idea of seeing an oncologist - most likely until I've reached 5-years out. Don't worry Nettie -  as long as you are healed from rads, you don't really need to see the RO. I also had a problem with scar revision - removing that goofy dog ear under my arm - a year after rads ended. Even though I am a fast, good healer, my incision through radiated skin started separating. I stayed with the RO, who referred me to the Elks Wound Clinic, where they put me back together. All is well now, so I'm going to change my schedule, I'm sure.

By the way...the oncology nurse told me that she had a patient earlier that day who said "I'm just wasting your time, now that I am all through with treatment and doing fine". The nurse told her (and me) "oh no, we like to see the healthy, happy patients, too! We NEED to hear the success stories, too" 

KSteve ~ it feels as if the oncologists are more relaxed about TNBC, as we reach these 3,4,5-year cancerversaries. Not that they take us any less seriously. Maybe we can relax some, too - while being ever vigilant to symptoms, and keeping up with appointments and exams. Makes a good case for avoiding Dr. Google, who has so much doom & gloom that is out of date! Congrats on reaching your 4-year goal... HA!...take that Dr. Google!!!

Yes, we do understand your losing out on family holidays - but, you will make them better and more precious each year. On the Thanksgiving Day during my AC dose-dense chemo, our youngest daughter decided to make Turkey dinner, all by herself. (I was worthless). She did a great job, but I didn't have the heart to tell her I couldn't taste anything! 

In December, I developed Hand/Foot Syndrome, where my hands turned beet red, peeled in chunks, and became sooo painful. I couldn't wrap presents, or unwrap Christmas gifts! I asked for a letter opener for a gift - best gift ever! (The moral of this story is...don't plunge plugged toilets when you are going through intense chemo (too much pressure on skin)...and...ahem... take stool softeners when you need them!!!

simple ~ it should be a law that you only have to deal with one illness at a time - but there isn't. Glad you are feeling better. Proves that saying " it ISN'T  always BC". I know what you mean about feeling so good about being able to do the simple things. (You really have it together!). I had scar adhesion so bad, that I had to take pain pills, and saw a PT for therapy and massage to release it. I was out in the backyard one day, afterwards, on doggy poop patrol (with a 100lb Golden Retriever, it is a necessary evil), and I suddenly realized that I FELT GOOD! I could do that mundane chore, and it felt good! Maybe "simple" is the secret!

Yikes! I'm downright gabby, today! Must be 3-year giddiness! Better give you all a break.

~ Shar (shhh, be quiet)

Hi ladies.  I just read an article about a vaccine trial for women that were Her2+.  The end of the article talked about the AE37 vaccine that is currently in clinical trials.  It mentioned how it was lowering recurrence rates on TNBC.  I hadn't read that info before so I thought I would pass the info on...

http://www.mdanderson.org/newsroom/news-releases/2...

http://www.cancernetwork.com/breast-cancer/asco-ae...

ksteve, enjoy your date with Vinny! That's a long trip....a vacation even!

Spica, my cousin (bald naturally in the pic) is the one that shaved my head when my hair started falling out in clumps. The entire picture reads, "Love my cousin, we both hate pink!" And we both use it as our Facebook avitar! You are so right that bald chicks no longer phase me. In public, I spend more time wondering if any of the women around me have wigs on! Lol

Sorry if I posted this before but I was wondering if any of you ever experience strange smells for no reasons, it's like it's coming from inside off me.

Also just want to whine a bit, I'm so tired of aches and pains that just randomly come and go with no reason.

Hi everyone!

Haven't posted in awhile but I do stop by occasionally. So happy to hear all the good news lately. I have my 6 month check up next week, which always sends me into an anxious frenzy. A bit better this time, but I find myself feeling for lumps and such.

I had started metformin soon after completing chemo and was glad to be taking it. I didn't seem to be regaining energy and was in a lot of pain. Had all kinds of tests the past year or so. Possibly have an autoimmune disorder, have a pinched nerve, but no real help for the pain I had been in. I stopped taking metformin because my stomach was messed up and I got tired of it. I started to feel better and better. Stayed off of metformin until a few weeks ago when I thought I better stay on it. My pain came back full force. I am talking super painful all over, hard to move and it felt like I had on super tight long socks and gloves. Realized it was the metformin this time within a few days. I stopped taking it again and started to feel better again as the days passed.  I will talk to my mo about it but was curious if anybody else had or has such symptoms taking it? It is suppose to be a super safe drug, but some people can't take it and unfortunately I am one of those people. I am so bummed, but glad to find out what my problem was.

Stupidboob-yes, I do those things also!

Spica and Ksteve - huge congrats to you both!

Simple - my goodness, that is no way to spend the summer! So glad the fatigue is behind you and you're back to enjoying the activities you love.

Nettie - yes. I had the weird smells all through chemo. I would smell odd things that no one else could smell. I'm also with you on the aches and pains. I have a couple that are sending me into a tailspin of worry right now, but I also have a bunch that I know are common post chemo stuff. Like Meadow, I feel like I've aged 10 years and literally hobble out of bed every morning. My joints ache the most. I've heard from most women that it does get better over time, so that's what I'm banking on. Hang in there! 

Bak - so sorry to hear about the Metformin. That has to be frustrating, but glad you were able to pin point what was causing the symptoms. Keep us posted on what your MO says. 

Nettie - We're hear to listen and pray you feel better! Pain just plain stinks. I know a heating pad or ice pack sometimes alleviates my achiness.

Bak - I had a pinched nerve in my neck/shoulder and I was in so much pain for soooo long. I finally found a physical therapist who is amazing. She could "feel" which nerves to work on and has been manipulating them with deep physical tissue work. I'm uncomfortable and in some pain while she works on me but later I feel so much better and the pain is diminishing, finally! I suggest you ask around for a PT who knows how to work on nerves. I swear my PT can feel which one to work on, she's that good!

Lisaj514 - I read a bit about curcumin capsules and like the idea of taking them. Did your dr have a recommended daily dosis and a particular manufacturer? You have to be so careful on getting pure ingredients and not fillers or preservatives.

Mags - SO HAPPY FOR YOU!!  Big hugs