Calling all TNs
Comments
-
Kathyrnn- You are in my prayers.
0 -
Kathy - that just sucks! Sorry you have the added stress.
0 -
Kathy..hoping it is nothing...been there done that..I was done with chemo and and had a mammo of lefty for the "fun" of it and had microcalcifacations....4 in a row...turned out they were vascular but totally freaked out for 3 weeks cause my bs was on vacation..so anyway understand completely what you are going through and hear ya/
on another note..went to the dentist this week...ok..I'm 53 and have always had cavities..you would think I would out grow them at some point..anyway..the hygenist said that people with highly acidic saliva have a tendency to have more dental issues...ok..I know that I can speak highly acidic..lol....she talked about alkaline..not sure if there is any correlation but remember MBG always talked about alkaline in our bodies...I just can remember if it is supposed to be high or low...does any know?
0 -
Hi everyone,
I've been following this thread for a while and thought I'd finally chime in since I've caught up on some of the posts and have something to contribute.
Alhusband- I'm brca 2 positive as well and had a bilateral mastectomy. Actually had the sx before i got results of genetic testing. Since I was only 40 at time of diagnosis, they gave me some ridiculously high percentage of recurrence within my lifetime. I was not comfortable with those odds and would have done bmx if I only had lumpectomy. So ultimately, your choice of treatment is gonna depend on what you are comfortable living with.
Inspired- thanks for posting those links. Interesting study. Not sure what to make of it.
Titan- the first onc that I went to talked about the acid alkaline bit so I looked it up. Cancer is suppose to thrive in an acidic environment so we want to eat things that are more alkaline. I bought a book from amazon that rated how acidic or alkaline certain foods were. General theme was sugars and carb were more acidic and fruits and vegetables more alkaline.
Kathryn - so sorry you have go through the added stress!
As an aside, I wish I would have found this thread earlier during my treatment since it seems like the only place where I felt like I "belonged" with the frustrations of tnbc.0 -
I am finished with chemo. Going to see my onco Aug. 12 and wondering if I should get the gene test? I have heard that your insurance doesn't cover this and it is very expensive?
0 -
Kathryn, thinking of you for Tuesday. I'm glad to hear it's only a small chance of being something else. Please report back as soon as you find out.
0 -
Hi Everyone!
I got on Metformin! I want to just stop for a moment and thank all of you who provided me links and articles for reference.
My Doc put me on 500 twice a day to start.
Questions:
- If I work out each AM, how should I factor this in? Should I work out first, then come home and do my kale/blueberry smoothie and take it then? Does the smoothie thing count as a meal?
- If you are starting off at 500 twice a day, when are you going up to 850, or are you?
- Is there a study anywhere that talks about 500 x 850 benefit?
- Have you found your sugar cravings subsiding? For the first time ever, I am not starving right now. Usually I can not get enough to eat, and even eat more than my husband. So for me, this is awesomoe. I finally am not thinking about food all the time.
- Have you had any tiredness? I slept good last night but it might have been that we were out of the house for 13 hours yesterday, in the heat.
Is there anything I should be aware of or such? I took my first pill last night right after eating dinner. Is that when you take it, after eating, not before, right? So far no problems!
Have a great day!
- Metformin
0 -
I didn't mean to scare anybody to get tested for the gene. Only a small percentage actually have it. I happen to have a family history of breast cancer. (Mom passed away from bc at young age) Insurance covered it but I had to go through genetic counseling first to determine if I was at risk. Without its $3000. Interestingly I went on my own 4 yrs ago before bc and was told I was not a hi risk for the gene since only my mom had it on her side. Agreed with it and no test done. Fast forward 2-3 yrs later, dad gets prostrate cancer and 2 more paternal cousins plus me get bc. One cousin and I get tested and we match. So gene was passed on from dad not my mom.
0 -
Annie my darling...hope you are ok...please let us know how you and your daughter are doing. We love you...tight group hug with our Annie in the middle
Maggie0 -
Netter - I paid for my genetic testing. It was about $3400. They set up a payment plan - like $160 a month.
I had it done because of my family history. I was negative. If you have no family history, I'd skip it.0 -
OBXK, Thanks for the response. No one in my family has breast cancer and very little cancer down the line. So all of this has been a shock for me and everyone else! And we know nothing about TN! I thank all of you for the info. It is very helpful and educational.
0 -
Netter - have you gone to the triple negative breast cancer foundation website? They have lots of good info.
Are you still in chemo? I hope you can put this all behind you soon. It's normal to feel a little adrift, when treatment is over. Seeing doctors weekly and then moving on to 3 months, leaves you feeling a little unteathered. Check in here, we'll hold your bow line. Wishing you all the best!0 -
Genetic testing was $3400, and insurance paid 80%. However, I got a call from a lady at the genetic testing place, telling me that there are 2 programs I could possibly enter (one or the other) to get the remaining paid. She said it's because they know that even with insurance, all this takes a toll on people's financial wellness. I knew for sure we wouldn't qualify, but it turns out, thankfully due to our AGI from the tax return, that we did qualify. I could not believe it! So our balance was automatically reduced to 0. She took the AGI, and then asked for the amount of our house payment and something else, can't remember, but we were able to qualify. They sent a paper out, that I had to sign, stating I gave her correct number, and then about 4 weeks later I got a $0 balance due bill. I was so shocked when she said we would qualify, that I took all her information down, just to make sure I could refer to this if I ever needed!
0 -
Netter, cograts on finishing chemo!
Who is your insurance? I Google'd my insurance carrier, and then found an article by them, that actually says they recommend the testing. Also, starting this year, most insurances are now approving an add-on to the BRCA test, called BART sequential testing, where they test the DNA strand to see if the codes is out of order (that's in laymans terms, obviously!).
I had the genetic testing done at 1 year after finishing chemo.
I did it to see if I should go ahead and have the prophylactic hysterectomy.0 -
Mags my friend I thought I would have a litle break from the board as I was finding that typing and reading about cancer all day long was suffocating me a little bit and I couldn't seem to come to grips that I am still here and I have a life to lead and to feel grateful for. But after thinking that, I thought how on earth can I not see how things are going for our dear Kath and Karen and also LUV. I felt like I was abandoning them and I felt selfish. so I guess I am still here to annoy everyone and tell you about my Chloe at times.
My girl is ok, thank God. Amidst my prayers and bargains with God we finally got the all clear. They will keep an eye on her but they don't think there is anything to worry about. So I thank whoever was looking over us with deep gratitude.
So now I'm worrid about my old feller. My daughter said he was tired today and even had a little sleep in the airport lounge when it was empty and that he seemed slower today. So my radar blinked on and I keep looking at him to make sure he is ok. That old feller is my life and I have to reassure myself that he is okay and not overdoing things although he says he is fine but then he usually says that so I won't worry, little does he know.
Hope everything is going well with you and you are living life to the full. We have to aye cause we only get one chance at it.
Talking of periods I lost mine at 32 when I had a hysterectomy and that is one thing I won't ever regret.
Hoping all our ladies on here are ahead of their treatment and not getting too many side effects. Keep happy, keep cheerful cause it does help and laugh as much as you can.
Love to you all with huge hugs. xxx
0 -
Debra,
So glad your doc was open-minded and was willing to put you on Metforim. You are a already having good results with your troubling ongoing hunger. That''s fantastic.
I have not read anything about 1000 mg vs 1700. If I do I will let you know. I haven't had any bad side effects so far and I'm up to 1250 on a brand made by SOLCO healthcare. If you hear anything negative about that brand, please let me know.
I'd like to hear how it goes with you as you continue.
Hugs,
Peggy0 -
Annie...thank you for posting. Hooray for the all clear. I understand theneed for a break from time to time. This bc crap really wears us down....physically mentally emotiinally. I hope the ole feller is ok...another thing you must now worry over. You are a dear soul. I am trying to get back into life....hard whike still getting pt for the le surgery. Next surgery is on the 21st. She is going to start making the girls pretty.
Love and hugs all around
Maggie0 -
Peggy, I was about to ask you about those numbers and then I realized you just added the two pills. LOL I thought I was really behind the target on it.
)0 -
Netter- I did not have a family history, but my onc. insisted I get tested because I was TN and under 50, my insurance paid 100%.
0 -
My wife Kathy's LAST CHEMO TREATMENT (hopefully forever!) is tomorrow! So so happy to have that necessary evil behind her. Next step is oopherectomy (because she found out last week that she's BRCA2 positive). Then either bilateral prophylactic mastectomy or rads. So, it's a mixed bag of good and not so good. Her MO says it's not a must to do mastectomy, while 2nd opinion MO says hands down that bilat mastectomy is a must given her young age (46). Both docs say oopherectomy is a given and must be done. They sure don't make this easy! Decisions, decisions. Thanks to all who chimed in with info to help her (us) make these decisions.
0 -
Alhusband- Yeah to the last chemo. I remember how happy I was when I reached it. Just to let you know, I had the oopherectomy 6 weeks after last chemo. The gynecology oncologist suggested I would transition better to instant menopause since I was already not having my period from the chemo. I've heard from another that the sudden drop in hormone was hard to adapt to since they didnt go thru chemo but I didn't have too many serious probs other than some hot flashes which I was already getting while on chemo anyway. Still sucks to have them gone since i feel like im still too young to be in menopause but better to be safe and proactive.
0 -
Hey Gang,
I hope all is well and I will try my best to get caught up soon. When it rains it pours right. I started the radiation and I am having some issues laying still but getting better. I have one lady that always seems to get me on my worst days and I told her believe it or not I do behave.......:) It is just the way they have to lay me. Just getting out is an ordeal for me but I am doing pretty good. Sure, glad that one right over the face does not last long. I missed last Friday because hubby and I have been sick. Then we have had so many car issues that it is not even funny and I was really must blah. I am starting to feel a little tired and have already had to be treated for not a burn, but a yeast infection in my arm pit. I did not know that might happen.
Ok, I have a question for you ladies. Two years ago when all of this first started I was fitted (well so called fitted) for my prosthesis and I thought then (but went with what the lady said) and got a breast that is really to big. I wore it a couple of times and then was being told that it looked to big for me (from family) and so I thought I might just buy the cutlets for the other breast to make them look even but I just think that will be to hot. So, I wore that one a couple times (never touching my skin) and washed it still in the original box and wondering if you all knew of a place that sells the used ones? I know I could donate it and I might but thought I would try to sell first since it is brand new. I am getting a new one in my right size. The lady that fitted me put me in a 9 and the new lady said WHAT that is way to big for you.......so I have been wearing one from the ACS that I picked up back then too. It is a size 6....big difference. The new lady is ordering this size for me since I like the one I have but she said I might really need to be in a 4. I am going for a new fitting soon.0 -
![@[216673695152175:274:I love Dogs]](https://fbcdn-sphotos-c-a.akamaihd.net/hphotos-ak-prn2/p320x320/1098401_222679397884938_1014687602_n.jpg)
All you ladies are!!
0 -
back at ya baby...what a cute pup
I am getting really close to the 2 year mark. With the great report from the doc I am feeliving quite alive again. The only thing holding me back have been the complications of my recon road. The perfection phase is starting soon (21st) and then another tweak in Dec with most likely one more procedure in 2014. Everyday that passes leaves me feeling just a little bit better. To all the ladies in tx please keep fighting and stay strong.
Maggie
0 -
Read a report this morning stating that cancer researchers are now more incline to deem Stage 0 breast cancer, as non-cancer.
I feel some type of way about this! I have seen on occasions Stage 0 BC patients move on to more advanced stages of the disease.
How do you guys feel about this? I would be scared about not being treated enough, and having the fear of always having to look over my shoulders. Cancer is very complex and tricky.
http://gma.yahoo.com/5-ideas-attitudes-cancer-022144215--abc-news-topstories.html
0 -
Oh Fighter34, I think you are right. There could be a few women in the minority of those numbers who might advance because they didn't receive proper initial treatment.
In the article, they reference removing the word 'carcinoma' from ductal carcinoma in situ, so that the diagnosis isn't as frightening to patients.
I take issue with that being the catalyst behind the proposed change. Women are probably more likely to change any part of their lifestyle to improve their survival odds with the wording the way it is. Changing the wording might place them in a false state of security, that they don't need to do any lifestyle prevention. I understand we don't know what causes bc (in general terms), but there is much evidence that some lifestyle changes will increase survival risk. And these women might not look deeper into actionable items that they can do to keep this out of their future, if they aren't aware of the likelihood that this may have developed into cancer over a period of time.
0 -
ALHusband - Congrats on the last chemo!!
I had my first round of Taxol yesterday and it wasn't so bad. I drank so much water the day before and morning of that they the IV went in easily. Took all my pre-meds but still had a reaction - chest tightening and then my face got so red and hot and I started sweating. They stopped the treatment and gave me Benadryl in the IV even though I had taken it in pill form prior to the treatment. They then started the treatment again and all was well.
I continued to have facial flushing throughout the day with some hot flashes, including three overnight with night sweats but it wasn't too bad. Happy to wake up this mornnig and not be nauseous like with the EC so that is a bonus. I still have some facial flushing but I can deal with that. 11 more treatments to go!
0 -
Hello all: It's been awhile since I've visited here. ALL IS WELL with me and like others, "reading about" this tends to encourage dwelling on all the negative . . so I too have taken a break. NOW, though, I need your collective advice. I had a pap smear last year when diagnosed with TN BC which came back "questionable" - repeat pap smear last fall was o.k - repeat pap smear in July was back to "questionable". I have met with the gynecologist and surgeon and am scheduled for prophylactic hysterectomy/oophretomy later in September using the robotic laporoscopy method. (BOY, that is a lot of words!) Who has experienced this, tell me ALL about it, the good, the bad, the ugly.
0 -
Thank all of you for the info on genetic testing. At least I have something intelligent to talk to my onco about. I am pretty sure that radiation is the next step and probably right away as it has been 6 weeks since my last chemo. Hair is growing, YEA!!!!!!
0 -
Fern, due to your abnormal paps was it easy to get this approved? How did you go about getting your oophorectomy? Who did you consult with, and how did you choose your doctor? Is it your obgyn who is doing the surgery?
Today, I got my papsmear results back which were normal. However, being age 43 at diagnosis, I am planning to move forward with an oophorectomy this insurance plan year.
Fern, also Amy might post her experience here. When I was waiting for my results (and I had a bit of spotting) she answered some of my questions in a PM, and she had the same surgery you are getting. She was home the same day, and had a very good experience with it. She will give you some great information I think.
0
