Calling all TNs
Comments
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mitymuffin-this is the stuff we like to hear. Thank you for checking in. Looking at your stats, did you have radiation after chemo? You live in ms, did you go to Sloan Kettering in nyc for your treatment?
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Lisa,
Yes I had radiation after the chemo. I went to Sloan Kettering in NYC for the surgery and for a treatment plan, and I go back there for my check ups. I did the chemo protocol that Sloan Kettering recommended, and the radiation, closer to home.
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Mitymuffin, thank you for posting such a positive update, this helps us all! May I ask if you have any links to the study you mentioned about tn having higher incidence of bc in other breast? I would love to show this to my mo and discuss more frequent check ups. I have never heard this before.
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Shari,
I think my information is actually old, not new, but I read the article on the Breast cancer.org site http://www.breastcancer.org/research-news/20090710?utm_source=Personalization&utm_medium=accounts&utm_campaign=27
I do have dense breasts, and they say that dense breasts should be monitored with ultrasound or MRI as well as mammograms. So, Sloan Kettering said to have the ultrasound (or MRI) in between yearly mammograms.
I know its hard to believe for those who are still in shock from their diagnosis or undergoing treatment, but I never even think about having had breast cancer anymore, except when my check up times roll around.
Love to you all.
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thank you MM! I like the idea of alternating mammograms with ultrasound, but I'm sure this is not standard of care in Canada, especially for someone who does not have dense tissue. There is also the controversy of a recent study questioning the benefit of yearly mammograms. It's all so confusing. A lot of times I believe cost of diagnostic requests come to play when it comes to screening.
I still plan on discussing this with my mo in June.
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I just listened to the webinar on managing the fear of recurrence with tnbc through LBBC.org. It was very good. You can still listen to it as well as the first part which was on medical advances with tnbc (I didn't listen to this one but now I'm going to go back and listen). Go to LBBC.org/events and look for the April webinar, from 4/17 and 4/24. Its free and was very good.
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Mitty it is so good to hear from you and that you are doing so well. Have missed your smiley face on here. Congratulations, it's wonderful that you are now four years out so whatever it is you are doing keep on doing it and we will see you again in April 2015!.
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Thank you Cocker Spaniel. I'm wishing you good health and happy days.
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Mity, thank you so much for coming on and posting. We love to see posts like that.
Cat, I'm sorry about the clinical trial news. Hopefully, the one in Chattanooga will work out.
Tek...you are getting there with the taxol treatments. I also got more tired with each infusion.
Lisa, I had signed up for the webinar, but forgot about it. I've listened to several other ones they have done and they have been very good. I'll be sure to check it out. Thanks for the info.
I'm slightly more than half way done with rads now....I did #18 of 33 today. Skin is just slightly pink. I'm keeping my fingers crossed that I'll be one of the lucky ones and get through rads without too much discomfort. It is nice how fast rads go compared to everything else.
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Navy been thinking about your boy today. It's Remembrance Day (Anzac) today. I hope you had a wonderful time with him and had a great time with your grandson. Don't forget you gotta party when you get home. xx
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Awww....Thanks Cocker. I will be traveling to see him in about 3 weeks
After that he will be going to Eastern Europe. Guess its time to get my xanax prescription filled! I pray that things get resolved in that area of the world.Wishing everyone a peaceful day. I am getting together with my family tomorrow. We are celebrating my parents birthdays. They both turned 80 this month. I am so grateful for their good health and happy attitudes.
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While mom was out shopping, the young daughter served her father tea. Dad told mom the story. Mom says, "Did it ever occur to you that the only place she can get water is from the toilet?"
Happy Friday ladies, Jan
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mitty..congrats for being 4 years out!
lisa: thanks for the info, checked lbbc.org. Is it the one related to metastatic bc (that one has the dates you mentioned)
if possible can u post the exact link.
navymom: wishing you and your parents good health..both mom dad turned 80 happily and healthily!! wow!
cat: thinking about you...keep fighting girl!
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banR-dont know the exact link but lbbc.org and look under events then archives then April 17 and 24 are the ones in medical updates for Tnbc and managing fear of recurrence. Haven't listened to the medical one yet but will. These are webinars where you listen via computer. You have to register but they're free
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Hi Cat, I'm thinking of you today. I, too, have just been told that I don't qualify for the PD-L1 trial that I was trying to get in. I thought it was for tnbc, but my MO said they wanted to test on ER+ breast cancer. Even though I'm tn, she was hoping I showed a little ER, but nope, not a bit ! So, we're going to see how the Halaven works, and keep the other 2 trials (that she is pretty sure I will qualify for) if and when the Halaven stops working. I'm a little discouraged because the other 2 trials limit cell growth like other systemic txs, it's not an immunotherapy tx. My body seems to find a way around the systemic txs, so I'm praying that more trials come up or that the parameters expand to allow me to try the immunotherapy ones.
I also am not too happy that my blood levels are low again, even after a 2 wk break. So it's back to neupogen shots next week. I'll be traveling downtown 4 of the 5 weekdays, next infusion is next friday.
Well, enough of the belly aching.... I'm missing my daughter... she went to Disney with the marching band, and won't be back until Sunday. My other daughter is going to a school show tonight, so I convinced my dh to take me to Ruth's Chris tonight (before chemo-narcolepsy sets in). I know it's not the best thing to be eating, but I haven't been there in like 5 yrs. (I'll make sure I eat broccoli if they have it). We all need a little treat occasionally, right??
Wishing all of you a wonderful weekend. Enjoy!
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thanks lisa..will check again
slowloris: Praying for you. Pls be in touch.
Me, finished all 33 radiations. Battling joint pains and lower back aches which MO says is surely because of Taxol. Lets see..In the meanwhile there a coincidence again. Last year my thyroid TSH levels deviated from the normal range, my medicine dosage was changed and after a year TNBC was detected. Today my blood report arrives and my thyroid TSH is again off the normal range! I remember to have come across so many articles showing association between thyroid and BC. Lets hope this one is not connected. For the next 4 years, I guess everything which goes wrong with my body will put me on high alert.
lots of love to all the wonderful women here...
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Hi everyone. Sorry I have not been on but was just feeling sorry for myself. My surgery was put off til May 12th due to a lack of surgery rooms. Unfortunately Roswell Park Cancer Institute is a very busy place. I just want this thing out of me!!
Thank you to all who continue to share their updates after treatment. It is an encouragement.
I am getting the short haircut tomorrow. I figure I may as well get used to it short. May be easier to take when it falls out. I will be donating my hair so something good will come if it!
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So I just did my 4th round of chemo. This one was Taxol/ Carboplatin. I go measured and guess what?? I started at 6x6 and Thursday it was 2.5x3!!!!!!!!!!!!!!!!!!!! I have so much hope. I can't believe it's working. I was so scared. Just wanted to tell you Ladies. Maybe give someone new some hope. Just look at that. In such a short amount of time. Makes all the side effects worth it. Hope you all have a GREAT weekend.
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I'm new here as of tonight. I was diagnosed in April with a triple negative. At first I jumped up and down because I thought it was good to hear the words triple negative. Needless to find out it's another whole ball game, I am finished with my core biopsy and now headed for my Sentinel Node biopsy and a Port a Cath.
I pray this disease has not spread in my lymph nodes yet. A few weeks from now I'll know.
I have faith so far in the Dr's that I have chosen and now it's all up to my strength and God's hand.
I hope to find friends here to help me muddle thru this journey that I take a day at a time.
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In a few weeks I'll be starting chemo and I'm scared to death of the side effects that it will bring me.
You give me hope here with just your post that I can do this and make it.
Thank you for your post
Bonnie
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BanR
A nice pat on your back for the donation of your hair.
Thank you's come from so many that need the hair so badly
It's not the best circumstances to do it but I'm glad you made the choice to donate.
Bonnie a newby here recently diagnosed with triple negs and ready to begin my journey to a healthy body again.
God bless you
Bonnie
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Coop, that is GREAT news! You are really responding to tx-it is very noticeable in your pic! Yahoo-keep it up!
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LoveBonnie, welcome to this group! It can be so scary at first, we have all been there. but believe me, you can do this. Yes there will be side effects, no doubt. But all are tolerated and you can do ANYTHING that will save your life. Be strong, and we will be right here with you. Meadow
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Coop, Awesome results!
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Coop, that's great news. I am starting on carbo/taxol this Friday. How have you been doing on it? Side effects? It's gotta be better than AC?
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Thanks all. I just did my fourth round of Taxol and 2 round of Carbo. So far the side effects are at a minimal. Constipation is horrible. I did have tingly hands and feet this time. That was a strange feeling. A bit of sore muscles. My doc told me to start walking because I have a treadmill. He said it was a great way to relieve stress and watch my white blood count. The day I just can't bring myself to do it I need to come in and get blood work done. I am beyond relieved that I am responding. I was so nervous that it wouldn't.
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BanR, congrats on finishing rads. I'm three weeks behind you. How is you skin?
Coop, congrats on the huge shrinkage! That is awesome.
Mompv, that is a good idea to get the short haircut first. Way to go on donating your hair.
LoveBonnie, your post about jumping up and down about being triple negative made me chuckle. I imagine most of us (including me) had never even heard of the term "triple negative" until we got our own diagnosis. Now, it's the phrase that runs through my head the most often throughout the day. Before starting chemo is a stressful time because you don't really know what to expect. You can do this! My one bit of advice is to look for the chemo thread for your month here on this site and participate in it. As the months go by on chemo (and beyond), those ladies will help tremendously with nitty gritty chemo-related stuff.
Slowloris and Cat, thinking of you both. I'm hoping the Havalen works for you Slowloris for a long time with minimal SE's.
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Just to cheer you up!!!
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ALHusband - wonderful news on your wife's scan! I'm so thrilled for you both!
Simplelife - you really struck a chord with me when you said your diagnosis mimicked PTSD. I feel the same. Congrats on being half way done with rads! I'm so glad you've had minimal side effects so far.
Megomendy - thanks for the well wishes. So far taxol/carbo is easier for me than AC. AC never made me nauseous, but I always felt really blah and spent a day or so on the couch. With this, I definitely feel better, but I will say I'm more physically fatigued. I'm just trying to take it very easy and not overdo it. Good luck with the new regimen. Hopefully you feel better on it as well.
Jianchi - sending you prayers that the lumps turn out to be absolutely nothing.
Slowloris - I've always wanted to go to the Southern Caribbean, but Tahiti sounds fabulous too! Best of luck with your treatment. I'm glad to hear your side effects are minimal.
Cat - I'm so sorry you didn't get into the first trial. Sending prayers that you're able to get into the second one and that the taxol is working in the meantime.
Mity - congratulations on being 4 years out! Thanks so much for coming back and updating all of us.
BanR - congrats on officially being done with rads!
Coop - that is great, great news!
LoveBonnie - I'm so sorry you're joining us, but this is a wonderful place for support. You will fight and you will get through this. Wishing you all the best.
The blood filled cyst on my ovary is gone, gone, gone! So that was welcomed good news. My onc still ran a CT of my abdomen and pelvis just to be sure nothing else is lurking. I should have results early next week. I hate to admit this, but I've really been struggling mentally the last couple weeks. I think I was in a sort of denial the first couple months after dx and now I feel totally in the thick of things and it's hard to get my bearings back. Did anyone else hit a wall mentally during treatment?
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Cocker: Funny stuff!!!0
