TRIPLE POSITIVE GROUP
Comments
-
SpecialK and Tricia-Anne...congrats to you both and wishing you many more years of good health. Thank you both for coming back here and being an inspiration for us all!
That is my FAVORITE WC quote!
0 -
Thanks so much again, SpecialK.
What let you decide to go for the trial by then? When talking about "higher" risk of recurrence, what are the factors to be considered and what tests are needed to calculate the risk? Who is going to do that for us, MO, RO or BS?
My wife will have the 5th (neo) TCHP infusion one week from today. I believe it is time to think about what the next should be. Of course the first decision would be lumpectomy or mastectomy, then what is next? radiation therapy? HP plus Hormonal therapy? Need to try the nerlynx after one year? How about the trial like you did?...
Sorry for being a confused husband.
0 -
lily - you are not a confused husband, you are a concerned one! Perfectly natural. Some things naturally follow a certain order - if doing neoadjuvent chemo, surgery would follow and what type is a conversation to be had with your surgeon. Whether radiation is needed is dependent on surgery type and tumor location plus nodal status. If lumpectomy is appropriate radiation would automatically follow. It is less the case with mastectomy, but margins and nodal status would be determining factors. It has been my experience that surgeons and radiation oncologists are an important part of your treatment team, but the long term relationship - and advisor regarding future risk - is your medical oncologist. For us TP folks, anti-hormonal meds are prescribed - generally aromatase inhibitors for post-menopausal, and Tamoxifen for pre-menopausal, but recent trial data does show advantage for the use of ovarian suppression and aromatase inhibitors for young women, and some post-menopausal women who have bone thinning or cannot tolerate aromatase inhibitor meds do take Tamoxifen. Enrolling in a trial is not that common for most early stage patients, but some of us do it. The trial I was in did not come through my oncologist, although my center does participate in them. This particular trial was a discussion point on this very thread, so I researched it and enrolled in it with the cooperation and blessing of my oncologist. As far as Nerlynx, it is a question for the oncologist, from what I have seen it is not being widely used and seems to be partially dependent on whether the patient can tolerate the side effects, which seem to be mostly GI upset. As with all treatment, it is a cost/benefit analysis.
0 -
SprecialK, thanks so much!!! we really appreciate that!!!
0 -
Trisha-Anne and SpecialK, you give us hope and inspiration. Congrats
0 -
Congrats SpecialK!! I truly appreciate all the help, encouragement and inspiration you provided to me when I was first diagnosed.
0 -
Thanks guys!
0 -
I love reading the success stories.
After diagnosis I placed this quote on my webpage at my treatment center.
The devil whispered in my ear, "You are not strong enough to withstand the storm." I whispered in the devil's ear "I am the storm."
Vicky
0 -
coachvicky- I LOVE this quote. Thank you.
0 -
Thanks for the inspiring stories. I have had my Herceptin suspended for a second time because of a decreased flow rate. I have completed 7 Herceptin infusions and hope some time for my heart toheal will allow me to continue later. Meanwhile I only have a week of radiation left. Has anyone else stopped Herceptin so soon or been able to go back and get more done?
0 -
Hi Jstarling, I also had to stop my HP after 5 sessions due to decreased flow rate too. I just resumed back on Thursday (2 days ago) after 9 weeks break so I only missed 2 sessions. Hang in there, you will be fine.
CoachVicky, that is my exact favorite quote “ I am the STORM” lol
Special K and Trisha-Anne congratulations on your milestone! Thanks for sharing. Wish you more years of NED❤️
Princes
0 -
Hi deni1661 you are right and that is why I have moved the surgery further. I have a new date 20th November, that means I will be spending thanksgiving at the hospital. Thanks for being sweet.
0 -
Princess ... I work to avoid a hospital stay over a holiday. It isn't always the regular shift. Are you 100% positive your surgeon will be on call or will it be someone else? Not trying to sound an alarm ... just want you to be sure you can get to YOUR surgeon / doctor if needed.
Vicky
0 -
princess - thanks for the congrats! I have somehow lost track - which surgery are you having?
Jstarling - there are a number of members who had difficulty with maintaining LVEF and had to discontinue H. I think blownaway, fluffqueen, moon, and deniseg all did - I can’t remember if fluff restarted, but all are currently NED I believe. I know it’s hard to stop the med that is so important, what is the plan - pause and recheck LVEF
0 -
Good morning! So sorry I have not been around. Started a new program at work for the new freshman students that start. I work at a college.
But an update on me. I've lost 32# in 7 months. My MO was worried, threw all the possible causes at me. She ordered a PET scan that came back normal!!! Thank you god! She is not sure why I am losing weight. I eat the same as I always did. Haven't changed how I exercise. So i guess I will just enjoy the weight loss. Sucks cuz I am constantly buying jeans. Lol.
There are so many new faces I am not even going to try to hit them all. Welcome to all of you. You have found a wonderful site here. This thread is amazing.
I have had my exchange surgery and so far am very happy the results. I think I will end having 1 more fat grafting to even the boobs out. My PS listened to what I wanted and did very good at fulfilling that. Now if I could just find a freaking comfortable bra. Lol
The quote that got me through everything is.
"No matter how you feel, get up, dress up, show up, and never give up!"
: faith hope love! I have attached the Tattoo I actually got 3 days before I even knew I had cancer
0 -
specialK - congrats on your 8 year milestone. You have, from day one, been such an inspiration to me and so many others on this thread. You give us all hope and encouragement for which I will always be grateful :-)0
-
Trish - congrats to you also on your 8 year milestone! You are awesome, thanks for all your encouragement0
-
Jaboo - I pray you have a great meeting at your 2nd opinion appointment this week and the information they provide helps with your reconstruction decision.0
-
Princess - Coach Vicky brings up a great point, make sure you are getting your surgeon over a holiday. I wouldn't want anyone else but my surgeon and thankfully, he wouldn't allow anyone else - he even did my nipple tattoo which totally surprised me and made me appreciate him even more.
0 -
Coach Vicky - I LOVE your quote and how you are always able to inspire us!
Shelabela - I LOVE your tattoo, isn't it interesting how you got that before your diagnosis? Another example of how God works in our life. I like your quote too, great advice for everyone really....no matter what a person may be going through. I am glad to hear your weight loss is not due to anything specific and that your doctor made sure to run tests to be sure (good doctor). Maybe your metabolism changed after treatment - that would be a great side effect! The only comfortable bra I can wear these days is a sports bra. It helps with the mild lymphedema I have under my arm.0 -
deni - thank you, you are sweet
0 -
Hi CoachVicky, thanks for your concern. My surgery is on Tuesday and yes he will be on call on Wednesday, he isn’t sure about Thursday (thanksgiving day) but said he will make himself available should anything arise as he will be in town regardless.
0 -
Special K I am having my exchange surgery. Implants with a bit of latissimus dorsi muscle to create extra pocket. I told him I want the new boob to look as good as possible aesthetically so he suggested that. I am small framed with no fats on my stomach area needed forDIEP
0 -
princess - are you remaining hospitalized beyond the surgery day? Is that because of the lat dorsi aspect? Or are we worried about on-call availability through the holiday weekend if you experience issues at home? I apparently have lots of questions, lol!
0 -
Thanks for your post.
I have a referral in for a second opinion...my oncologist was very defensive when I asked her for another opinion. She indicated I wouldn’t be told anything different than she already told me. With that type of response I was definitely getting another opinion. Even if I hear the same opinion, I will feel better for pursuing one.
0 -
SpecialK no worries with the questions at all😁
The 3 days hospital stay is because of the lat dorsi. Recovery is similar to MX and TE placement surgery
0 -
Eily333- good you are getting a second opinion. Even though I never did and that was because I felt very comfortable with my team. I had a long list of questions for each of them and they answered every one of them.
I will be disturbed too if my MO is being defensive. Boy! The man gets a long list of questions each time I see him and he's never tired of providing me with answers with a smile.
Do whatever you have to do for your peace of mind❤️
0 -
SpecialK, congratulations on achieving a fantastic milestone and thank you for being here to share with us.
Shelabela, thanks for checking in. It is good to hear from you. I keep hoping that cherry-sw and KimCee would check in and say hello too.
Deni1661, I hear you. My sports bras are more like training bras from years ago. It’s been hard to find anything tolerable. Hanes makes a stretchy striped fabric cotton one. In the days before diep it would not have provided any support.
As for me, I had a another surgery in August to debride my infected abscess from an old drain track. It ended up being more involved with mesh also removed. I’m still taking 2 antibiotics but things have improved. I’m hoping this chapter will end this year. I’m getting ready to pass my two year milestone. The last 2 years have felt like a lifetime. When I started here I could not wait to return to my old life. I realize now that that was not a realistic goal. I’m just grateful to be on the mend. The rest will take care of itself.
0 -
Hello, beautiful ladies! Once again, I want to say how grateful I am for this site. I have told new friends that I've met during my cancer treatment about this website and I know they have joined as well!
I continue to have pain in my left breast area even though it's been almost 2 months since my radiation ended. The doctor did an ultrasound last week but thank goodness it came back normal. I just finished up an antibiotic because they wanted to try that thinking it might be a tumor bed infection, but I still have the same pain so I don't think that helped. I go in for my next Herceptin/Perjeta infusion today so I'll talk more about it and what the next steps should be then.
Quick question! I am almost at the 4-month mark since chemo ended. I've noticed in the last week or so that my eyebrows and eyelashes are falling out again.
Is this normal? I can't really find much about it online. For some silly reason, this is bothering me more this round than it did the 1st time. Anyway, just wondering if this happened to others as well. Thanks so much, everyone!0 -
Trisha Anne and Special K! Congrats on reaching your milestones!
tld2017 -- I'm almost four years out from my last chemo, and I still have sad eyebrows and eyelashes. I draw in my eyebrows, but have given up on my eyelashes. It saves me 10 minutes every morning, the 10 minutes I used to spend applying mascara. I do have false eyelashes, but I'm not particularly skilled at attaching them. It is what it is. I'm less vain now than I used to be. It's all a part of the new post-cancer me.
Suburbs -- I really, truly hope that this last surgery puts you on the mend permanently. You have been through so much for so long. I've always said that triple positive cancer is a marathon not a sprint, but your situation deserves its own category. ((Hugs))
0
