Calling all TNs
Comments
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for those on metformin, what do they want to see your glucose numbers at.....around 100 is the norm, yes? below that? Thanks
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Hi everyone! I may not post much but I'm certainly a lurker...lol....66 months out on Sept 20th...I remember my onc telling me that treatments will change from the time of my treatments 5 years ago..and yes they have changed somewhat..."they" are finding out more and more..just wish breakthroughs would happen faster than they are...
still dislike hearing that tn is hard to treat..blah..blah...but remember alot of us are still here and doing fine....BC almost seems like a dream to me now....I remember hearing that exercise is excellent for tn's...urging you all to walk/jog...if you can...I think it really does help...mentally as well as physically...I started doing this approx 5 years ago....think I'm addicted now....at first I was like..wow..I'm going to have to do this the rest of my life..but you know..it's good.
Love to you all....
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Titan, thanks and beautiful!
Recently started metformin and glucose level (tested for insurance reasons only) was 87. Slowly increasing dose until get to 2xday 850 mg each dose. Now at 850 in morning and 425 eve. No side effects/symptoms noticed so far. Mo prescribed it on my recommendation of researching it further and she felt it was worthwhile. She even spoke to an endocrinologist about it and he felt it was ok. I'm not diabetic and she said with a healthy pancreas it should not adversely affect blood sugar
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Titan, I dont think you can ever be called a lurker here, you STARTED this thread didnt you! So glad youare doing good.
Thanks for the info Lisa
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Titan: So nice to hear from you! Lurker, ha... you're the one who brought us all together, and I am still grateful for that five years on. Hope your family's all doing well. I still try to walk/jog 5 km a few times a week... plus we have a mountain nearby for cycling and skiing. I agree, it IS great for mental as well as physical well-being.
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Thanks everyone!Kathy- it is a wonderful feeling not to be consumed with breast cancer, oh I think about it with every unusual ache and pain, but I don't constantly think about it like I used to!
Early congrats to you Luah!! 5 years is absolutely awesome!!!
Hi Titan!
Lynda- I did not have, nor was offered, the mammosite test.
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Tif, CC, and Titan.....congrats on your anniversaries! I love hearing that kind of news.
Titan, thanks for the reminder about the walking and jogging. I agree that getting daily exercise is such a good thing. Not only does it reduce the risk of recurrence, it just feels so darn good!
Ally, I'm really happy for your pCR. Whenever you are feeling aches and pains from the chemo...just think pCR, pCR!
Lynda, it will be interesting to see what your MO says about the mammaprint test. I think with TNBC, most MO's don't do that test because it's not particularly useful in terms of determining treatment plans.
I'm happy because my hubby and I just spent the last couple days on a short vacation to visit friends in KY and go hiking and checking out caves. The weather was wonderful and I even had moments where BC was far from my mind. That felt wonderful. I need more days like that.
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My daughter turned 7 on Friday - we had a wonderful stress free pet party and hello kitty cake. The guy brought snakes, frogs, a 70 lbs tortoise (the kids got to ride him), rabbit, guinea pig, hamster, chinchilla and ferret. It was just a great bday party.
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I'm beginning to feel like this is my good news thread! Love hearing about the fun you gals are experiencing!
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While I have mostly been reading (absorbing!) and not posting on this thread much, I appreciate so much the information all of you share about TNBC (a phrase I first heard only months ago).
Also, CONGRATULATIONS for those of you that checked back in posting about anniversaries, etc.
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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
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spica16 - what a wonderfully inspiring post!! thanks for sharing this with us. I am just coming up to 2 years since my surgery and I still do not feel that I am out of the woods - but I have hope, and I feel well, and like you, I have every confidence in my MO. So happy for you that you are doing well!
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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!
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Beautiful post, Spica. Glad that you are doing well. Couldn't agree more as far as trying to reduce the number of Dr. appointments!
Waving hello to everyone! I read frequently but post rarely.....busy living life!!!!
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Sweet Spica loving life!
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Not that I wish it on anyone, but now is the time for a new tnbc sister to find this thread! Let them read some great things! : )
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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!
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I am 4 years out and I, too, continue to see my ONC every 6 months, but it's only for an exam. He has even stopped doing blood work, let alone scans, on TNBC patients after 3 years unless there are symptoms. I am very happy with this decision. At my one year appointment, I had a piece of my blood work elevated that caused some concern so he ordered a petscan. Unfortunately it was during the Christmas holiday time, so I spent a week of high anxiety during what should have been an great time making new memories with my family. Thank goodness the petscan was clear, but I can't get back that time that was lost to me. I participated in everything but was mentally not there. I'm sure you ladies understand what I mean. So I'm all about no blood work or scans unless there are symptoms. Everyone's comfort level is different though.
On a different note, I'm super excited to be going to Vinnie Myers in Baltimore to get my 3D nipple tattoos on September 22! After having to do the lat dorsi flap at the beginning of 2014 due to radiation skin issues, this is the reward I've been waiting for. My husband and I will be traveling from Colorado to Baltimore and we're both looking forward to it. I'll let you all know how it goes. Time for the cherry on the cupcakes lol!
Hugs to all,
Kathy
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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.
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Simplelife4real - No wonder you were fatigued! Doesn't life just begin to feel right again when you can clean your house again?! I remember that feeling well. Enjoy the "normal" stuff again. I think I made my appointment at Vinnie's in May. I've heard he's is booking into early 2015 in Baltimore and Spring of 2015 for New Orleans. The first time I had nipple reconstruction and tattoos done in the PS office. The tattoos were subpar at best and really faded quickly, so when I had to go through another surgery 3 years later, my husband decided we should go to the best. And I chose to forgo the nipple reconstruction this time. They pretty much flattened out last time so I didn't want to do another procedure. I can't wait to see what the 3D tattoos look like on my Barbie boobs. We're both looking forward to this last step! Sounds like you are taking advantage of feeling stronger. So happy for you
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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)
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spica, lol, thanks for the speedy thoughts. My legs actually feel like cement lately but I've been through a lot worse so I can do this. Although you all will keep my pockets light and empty, you all will be in my thoughts while I run this for me, you, us.
Beautiful post shar! Looking forward to more of your insights and comments
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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...
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Spica your wood nymph made me giggle!
Kay sorry you have had such a rough summer and SO glad you are better
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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
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Simplelife, So sorry to hear what you've been through this summer and happy to hear that's behind you now. Your positivity is always appreciated.
Spica & KSteve - Huge congrats to you both and thank you for sharing your wonderful news!!! We all share in your celebration!
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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.
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Nettie, I feel like I am 20 years older, the past year took its toll on me and yes, I have aches all over and walk like a lil old granny! I do not have the smells going on, but I bet some one else can chime in on that. Hang in there girl!
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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!
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Bak - So glad you were able to find a source of pain and fatigue. Wishing you well for your upcoming 6 month check up. I'm so grateful for your post today. I've been taking metformin off-label for probably 2 years and didn't think about side effects. After reading your post, I've decided to not take it for awhile. I suffer huge headaches every day and my balance is way off. I've fallen twice recently. Oh how I hope those symptoms go away with the absence of metformin. Thanks!
Just to add my stats: 3 1/2 years NED.
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