Calling all TNs
Comments
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KSmatthews, I just moved to Crossville (from the Chicago area) a month before I got diagnosed, so I don't really know very many people here. We had just retired and had moved to Tennessee for our "golden years"....hah! Boy, was I in for a shock with getting TNBC.
If you are ever in Crossville and want to drop by, I'd love to meet. We live right in town.
BAK, propranolol (or any heart medication ending in "olol") is a beta blocker. Beta blockers seem to help increase survival times in women taking them that have BC. http://www.ncbi.nlm.nih.gov/pubmed/21632503 If I ever need them for heart reasons, I would be all over it. They do keep your heart rate lowered so they can make you feel tired so I can understand why your doc thought they might be causing you to feel tired.
Along a similar vein, there is a small study that indicates that statins may help protect the heart from damage from Adriamycin chemo. http://www.breastcancer.org/research-news/20130114-3. I actually asked my MO if I could take a statin for this reason. She said yes. I have hyperlipidema that my MO thinks is chemo induced since it is new. I will be starting AC in a week, so I'm starting the statin this week to get it into my system before the AC. I had mixed feelings about doing this because before this all started, I took as few drugs as possible. I used to work as an RN in cardiology so I'm super aware of heart issues.
Finally, this information about study on a BC vaccine that may help with TNBC was posted over on the TNBCfoundation.org site today. http://www.thealmagest.com/cleveland-clinic-innovations-creates-spin-company-develop-vaccine-preventing-breast-cancer/4019. It makes me sad that it will likely be years in the making and not be of any help to us dealing with the disease right now, but it could possibly be a game changer for TNBC down the road.
I feel like it's taken me a good 48 hours to recover from my last steroid crash from taxol. My treatments are not only hard on me, but on my husband as well. I feel badly about how hard I have been to be around these last few days. My husband has been very patient with me, but I have not been easy to live with. I really want to figure out a way to somehow make it up to him. The last thing I need right now is to alienate him and that's what I've done over the last few days. He's a really good guy. I need to remember how hard it is to be a caregiver. I forget that sometimes when I'm in the midst of my own emotional turmoil.
Kay0 -
Hi Jianchi-The doctors are pretty sure it was a new cancer, not a return. It was in the opposite breast and I am brca1 positive. I should have had a bmx the first time, oh well, can't go back:)
Thank you simplelife for the info. I was on a statin while on chemo also, but was taken off of it because of muscle cramps. It scares me to change anything, as I wonder if that is what is keeping me ned, but I still get tired and they are trying to figure it out. All my tests have come out good so far, so I hope it is just medication related and not something more ominous.0 -
Ladies have any of you who had bmx ever had shoulder pain afterward? Wife has been complaining of shoulder pain for a while in the shoulder opposite her cancer site. She says it feels like it's joint pain. I welcome anyone's thoughts.0 -
Bak,
I am on propranolol. I had been on atenolol for high blood pressure and read that atenolol and propanolol are beta blockers, but propranolol may help prevent recurrence of triple negative. It blocks two stress hormone pathways, whereas atenolol oly blocks one. I switched to propranolol for that reason.0 -
Alhusband...has she seen the doc for it? For me I had terrible pain and cording in both arms even though the left side had alot more lymph nodes removed. The rule for seeing the doc is a pain that does not go away within 2 weeks. It may be as simple as seeing a physical therapist to help with range of motion in both the arms and shoulders. Just be sure if any lymphs were taken out that they know how to take precautions for lymphedema. She def does not need nor want that! Hope you can get some answers and it stops hurting
Maggie0 -
AlHusband- I did not have a BMX, just a Uni-MX, but I developed a frozen shoulder on the opposite side about 6 weeks after my last chemo. It started off slightly painful and became very painful. My range of motion was very limited and I spent 10 months in physical therapy working it out. If the pain gets worse, I would let her onc know and he might recommend an orthopedist.I was told frozen shoulder is common in women approaching or in menopause as the change in hormones can cause this. Chemo putting us in rapid menopause would certainly do it! I really hope it is nothing, but have it checked out.0 -
Haven't posted in here for *forever*, and probably won't be checking in again anytime soon. I have SO moved on from TNBC. Titan & I chat on Facebook from time to time and share kitty stories. Some of you old timers in here may remember that I was an active horseman... and still am. In fact, I am now heavily involved in a national carriage organization and am one of their regional directors. So, still living an active life, sailing, traveling and carriage driving my horses.
About the only thing that has changed is that I developed a terrible cough that took forever to figure out (Google neurogenic cough... it's weird) and scared my oncologist. Also have a crappy hip that I am going to get injected next week... this also scared my onc, since TNBC can recur in bones. Best part is.... I am far enough out from my diagnosis that I didn't even *worry* the cough and hip might be mets.
So, it's been 4 years since my dx and, other than the above mentioned issues, I'm still moving forward (and away) from that nasty 24/7 fear we all live with for much of our early treatment phase. Now, seriously, I almost never think of BC, and when I do, I find the experience so foreign that I have to remind myself that I was, in fact, one of its "victims".
Works for me... no more nasty thoughts taking up brain space!
Best to all!0 -
Heidi - thanks for the encouraging post - looking forward to the day when I don't think about breast cancer so much. Good for you - you sound like you are living a fulfilling life and embracing each and every day - yeah!!0 -
Hi Bak, thank you for the reply! I wish you all the best in your treatment!
I am heading off to my second chemo tomorrow morning. Yesterday and today, I have been experiencing some strange taste change in my mouth ( a bit bitter feel). My skull feels a bit strange too. Oh well, time for the hair to fall I guess. I will have to face it any way.
Take care you all!0 -
jianchi - all the best for your treatment tomorrow. After the 2nd chemo is when my hair started to fall out - I got it all shaved off because it was so annoying having hairs everywhere.0 -
jianchi...sorry for the nasty taste. I could no longer eat many of the foods I loved...everything tasted like mud...hang in there. My hair started to fall in clumps 3 days after my second treatment. I too shaved it just to spare the clean up that hairpocolypse would have caused. I know this is hard but I had so much fun with colorful scarves and cute hats. Thinking of you and all you strong ladies enduring treatment now. YOU CAN DO IT
Maggie0 -
Hi All,
I'm going to my first breast cancer support group meeting today. We don't have one in the town where I live, but there is a monthly meeting in the town that is 30 minutes away. I wonder what it will be like. I hope I like it. I could use some in person breast cancer buddies. We just moved to Tennessee a month before I got diagnosed. I've been a bit of a hermit while I'm doing neoadjuvant therapy, so it will be nice to get out.
Kay0 -
TifJ thank you. She has Onc appt next week so we will definitely be bringing it up. The menopause connection makes sense since she just had Oophorectomy 11/6. Mags thank you as well. Good advice.0 -
ALhusband, shoulder pain can be caused by many things. I had cording in both arms/shoulders, which was very painful and frustrating. It felt like there was a band around my torso, tightening more and more every day. Can she lift her arms up? Sometimes you can see the actual rope like structures in the armpit.
Also, like the song says, "the arm bone's connected to the shoulder bone". If she is favoring a particular part of the body, it throws the rest of the body out of line. I used both a lymphedema therapist for cording, and a massage therapist who specializes wtih bc patients. I didn't think I could lay on my stomach, but they have special cut out cushions that allowed me too, although I have to admit getting on and off the table for the first visit was tough. But it was sure worth it!!! When she gets clearance from her Dr, She should definitely look into it.
I am on Metropolol (Lopressor) for high blood pressure and heart palpitations. Since I've been on it, I have noticed some fatigue, but its manageable. I am also on Lipitor for high cholesterol. When I was first dx, I said to my MO that I had always thought that heart disease would kill me. He said it still probably would!!!! I guess it's good that he thought the cancer wouldn't take my life!!
Well, I'm starting to feel very nervous about my surgery coming up on Monday. It may be a glass of red wine kind of night.0 -
Jianchi...still to this day I remember the hair thing...I didn't shave my head before despite advice from the onc to do so and on here....I just thought it would be easier to just let it fall out..I remember being at my son's track meet and it was windy and thinking that my hair would probably just blow off...my scalp tingled and yes it was a little painful...remember standing on the porch and brushing my hair and having it just come out on the brush...very very weird...was glad when it was all gone...and yeah..did ruin the drains in the shower..but oh well..it was my decision to do it that way....had to have control of something..ya know?
hang in there slow loris...good luck with your surgery..will be thinking about you0 -
SloLoris, I love what your oncologist said about heart disease. Personally, I would be delighted to die from something other than TNBC or SE's of treatment.
Happy Thanksgiving to everyone here that lives in the USA. I'm really looking forward to our family get together. It will mean a lot to me this year. It will be the first time that I will have seen most of my family members since I was diagnosed. We all live pretty far apart from each other.0 -
Thanks Slowloris. Great information. Everyone on here is AWESOME! Thank you all!0 -
Hi everybody, chemo done yesterday. This time I feel much better day 1 and now. The only difference is I took marinol after I returned home yesterday. Emend was given through IV as my first chemo. My onc priscribed 2 oral Emend for day 2 and 3. Like many of you said, it is expensive. I paid $58 somethimg and my insurance company paid $250. Just for 2 pills, crazy!0 -
Jianchi- I'm happy that this one is a little easier so far! Hopefully the Emend will help. Rest up!0 -
thank you Tiffany. I hope so as well!0 -
Hmmmm....300 odd bucks for 2 pills. Imagine if they did find a cure - the economy and pharmaceutical companies would collapse.
Hugs all xxxx and happy Thanksgiving to our US Sisters (& Brother)
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tazzy - the pharmaceutical companies are making tons of money from cancer - something not quite right about that!!0 -
Happy Thanksgiving to all of you.
Today I am spending the day with my Navyson and his little family. Upon arrival, my 3 1/2 yr old grandson said: I'm so glad to see you Gramma. So very grateful for the love of that little child.
Also grateful to get an email from a very close friend that had a breast bx on Tuesday at a Breast center somewhere near or in Reno, NV. 24 hours later she has results. BENIGN. Yay! I told her that One of the worst things about Breast Cancer (other than the obvious) is the WAITING. So glad she only had 24 hours to wait. Really made a difference for the prayers that will be said at her table today.
Grateful for all you ladies a gent that continue to make my life better simply for being here.
Prayers for all dealing with treatment issues.....You will look back next year and be amazed at how you are doing.
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Happy Thanksgiving to all you beautiful women and one guy! May you have a day filled with family, food and joy!0 -
Happy thanksgiving to you all. May you find peace and happiness within your family. xxooxx0 -
I have just read that this year, the first day of Hanukkah falls on Thanksgiving, a coincidence that last happened in 1888 and will not occur again for 79043 years.
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Some very sad news. Our Karen (OBXK) has posted that she only has 2-3 weeks to live. I just cannot believe this. Another beautiful lady will soon be gone.0 -
My dear Karen, Cocker posted that you are not doing well. I want to tell you what a dear person you are and that I have been lucky to know you. This has been a tremendous thread and has helped me and so many others face our diagnoses and side effects. You are in my heart. Jan0 -
cocker - thanks for sharing about OBXK - that is shocking, and I am so very sorry! My thoughts and prayers go to her during these final days that she will be comfortable and that her family will be given strength to cope with this very sad news.0 -
OBXK, love to you and your family, may your journey be gentle from here on out.0
