TRIPLE POSITIVE GROUP
Comments
-
Shore...a couple of supplements helped me during chemo. Acetyl l-carnitine and l-glutamine. Acetyl l-carnitine worked better for me than the latter.
Rib spot still hurts. What worries me is that it doesn't really hurt on the other side. It seems to be worse at night. It does not bother me at all unless I specifically feel for the spot. I am waiting until Wednesday.
0 -
NWArt,
Hugs out to you today. Thinking (and praying, yes I do that!) for you....I hope the next 11 months are STELLAR.
Much love.
t
0 -
Fluffqueen, I will be thinking of you on Wed and hope all is well....maybe you bruised a rib...that happened to my mom and was very painful but eventually healed itself.
0 -
Just joining the group, I am triple positive and am glad to find others like me to learn more. I had a lumpectomy on a 1.3cm tumor on my left breast and now I having my 3rd round of TCH (out of 4) this coming Friday. After that, along with continuing the Herceptin for a year, I am considering going back for a bilateral mastecomy instead of the radiation. I was considering before, but with the initial shock of everything, I wasn't ready to make such a tough decision. My breast surgeon and oncologist think otherwise but I am still concerned about having it come back in my other breast especially with the HER+. I hear that lumpectomy + rads = mastecomy, but isn't that only in the breast you have it done? What are other people's feelings on this? Anyone know the stats on this?
Also, reading through some of the postings here, I am hearing a lot about heart tests. I had heard about the risks of Herceptin but my oncologist doesn't seem concerned. Of course, with my own heart palpitations from anxiety, who can tell if there is a problem? Are there specific tests I should be insisting on?
One more thing, after my last TCH treatment, when can I expect to start feeling somewhat normal, particularly with the mouth thrush?
0 -
Welcome F1_IT_Chick, glad you found us! One thing to consider as you think about mastectomy is that you will be monitored closely now. I thought about it too and ended up doing the lump/rads. It is interesting that you are getting 4 TCH - did your onc say why 4 instead of 6?0
-
F1 IT Chick. I have a MUGA scan every three to four months to check my injection fraction. I think you should too. I believe it's a standard of care in my area.
I had a lumpectomy, dose dense ACT chemo x 8 treatments (finished April 17-YAY) and will begin radiation soon. Sometimes I feel like I'm rolling the dice but I trust my doctors and this was their recommendation.
Welcome and good luck with your decision. It's not an easy one.
Angie0 -
F1 Chick,
Welcome!
I'm also wondering about the 4 vs 6 TCH. Could you elaborate? When I went through chemo there were studies/trials being conducted on 4 tx vs 6, but I was told it would be "years" before data collected enough to change it. If it's changed, or if your onc is doing it now...I'd LOVE to hear his/her reasoning! (If you don't mind sharing.)
The Herceptin creators recommend a baseline echo/MUGA BEFORE Herceptin...and then one every 3 months while on it. That is on the Herceptin website I linked here several months ago....
If your onc says..."your young" or "your fit" or WHATEVER.....push for it anyway. 2 out of 10 women have carido toxicity with Herceptin, and some of us don't get our heart function back (damage at cellular level).
I can understand wanting to avoid Rads. But I had a uni-MX so can't speak to a bilateral. Others here can though...with pictures and everything!
Didn't have thrush, but I know several women here have...if you wait someone will likely speak up in the next day or two, if not go back 40-50 pages and you'll find stuff on it.....
Good luck!
0 -
F1_IT_Chick rads is complicated but in most cases if you have a tumor over 5cm typically you get rads too even if you don't have nodes. Granted I was one of those gray area cases so I got a pass. If you have positive nodes they do rads as well.
There are pros and cons to mastectomy. I didn't really have a choice as the tumor in lefty was about 6-6.5cm and I was small. Righty had some suspicious stuff show up in the MRI(ended up being LCIS). Initially my BS didn't recommend the BMX but once that stuff showed up in the MRI he did. You will have no to little feeling in your breasts and no feeling in your nipples. I think you also need to research reconstruction options if you are considering because they too have some things to consider. You may not be a candidate for some. There are risks with all.
BTW I'm glad in my case I did the BMX. I have implants. This was the best course of reconstruction for me and my body type as well as my desires.
0 -
F1_IT_Chick, welcome. Are you using a prescription mouthwash (Nystatin) for the thrush? I did and mine was controlled within 24 hours. I kept taking it for 7 days per the instructions and did fine.
I am one of the ones who is very concerned about the heart risks with Herceptin (my mother, father, and sister - age 46 - all died from heart attacks). Some say you can catch heart damage a bit earlier if you run proBPN and troponin blood work tests periodically in between echo's. My onc has agreed to do this for me. (In addition to echo's every 3 months)
I did a mastectomy hoping to avoid radiation but ended up needing it still due to close margins. So it's not a guarantee - however it is not that common to need rads after mx (DCIS was at the margin, not my IDC). However if you have good margins with your lumpectomy I would not think that would be an issue.
0 -
P.S. all I just posted some info on 4 vs 6 treatments in the TCH thread.0
-
F1, there is a newish thread called considering a phrohylactic mastectomy. (Sorry, I don't know how to link.) It has a lot of the questions and discussions you may be interested in.
0 -
I had an echo every 3 months starting right before chemo to the end. I think that or a muga is standard care on herceptin.
I am halfway to Wake Forest to get the bloodwork set up for the caccine trial. If it works with their schedule and I meet everything else, I may come back down next week for the first vaccination of whatever I get.0 -
F1_IT_Chick welcome. Your lump is small and low grade and no lymph involvement. I think mastectomy would be a bit of overkill in your situation. My onc. doesn't like to take the breast unless there are really good reasons. A mastectomy is no guarantee because you can still get cancer in that area even after mastectomy. Good luck on your research and try not to worry.
0 -
dancetrac- ... yea, thanks for the recommendation on the prescription mouthwash (Nystatin) for the thrush. I'm going to ask my doctor to prescribe it for me. It hurts for me to eat right now. Everytime I have antibiotics I suffer with mouth sores. I've had them since my last surgery. Right now I have four, one on my tongue with a thicken white tongue. Too many antibiotics in my life ... plus with 2 recent surgeries, and Herceptin my immune system is weaken.
0 -
Thank you, everyone, for your kind words and prayers for my dear Buster Brown as well as your insights into family drama. They really do help and I know y'all know what I am going through!
0 -
evebarry, I am so sorry to hear about your mouth pain. While on chemo, I used some baking soda mixed with water as a mouthwash (swish and spit) after every meal and before going to bed. It really helped me with thrush! I hope you are able to find some relief.
0 -
I feel closer to the familiar ladies on this thread than any other. Just looking for a few kind words of reassurance after a comment made by my friend Marie today.
"On Fri I was at a funeral."- Marie
"Oh sorry to hear that. "- me
"Yes she died of BC that then spread to her brain."- Marie
WTF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Is there no escape from this kind of insensitive behaviour. very low tonight.
Liz 0 -
I have to believe that people just don't understand how their comments affect us. You being upset is very understandable. Unfortunately there probably is no escape for us from BC...it's always there in our minds and sometimes in our faces. All I can say is I'm sending you some hugs!!!!!
0 -
((((Hugs jackboo)))))0
-
Kelloggs: Thank you. That means so much. On the plus side, just seen news item about research development in early identification of gene mutations.
It just helps to talk to those who understand....
Liz
0 -
Omaz
Thank you. I am smiling now
P.S The sunglasses are a note of irony as it has been raining continuously for 3 weeks here in UK!!!
0 -
Jackboo09
The behavior of family and friends in their response to lifethreatening illness has been just astonishing and very disappointing. It seems to have caused as much difficulty for many of us as have the side effects , physical and psychological problems.
I had a " friend" send an email bucket list! It was when I was first diagnosed and those thoughts hadn't even made it to my psyche as yet. i spent the entire day and night thinking and crying about that one!
My best friends are Brits.....from Yorkshire....0 -
Hi Ashla
Oh my goodness: the bucket list e mail is truly, staggeringly awful! In what universe is that ever going to be helpful.
BTW I'm aYorkshire girl!
Liz
0 -
Jack,
She's your friend....I think you should give her the benefit of the doubt.
When I think back to all the things I said TO and about breast cancer...ugh...I'm so grateful those people were gracious and gave me the benefit of the doubt.
0 -
Jackboo you should have sent it back and asked how many she's completed… I mean you never know when that proverbial bus is gonna hit ya. (I'm kidding. I would never really recommend you do that).
People do say and do dumb things.
0 -
Jackboo...
My friends are ftom Halifax....They live in Florida now . They were in the UK a few weeks ago and had the best weather they had seen in early spring in years..
I thought about these disappointing friends and how to handle it and agree witn Ton Lee in essence.
Calling them out or breaking off the friendship doesn't make you feel better nor will it likely change them . My feelings about them, however, will never be the same.0 -
Hi again guys
I agree Tonlee. I wont be fallling out over the comment. Just wanted to vent. My friend has actually been very kind to me throughout my journey. Everything in balance. I like to think Im a fairly tolerant kinda person.
Ashla, yes March here was unbelievably warm, but April has been a washout. Sorry us Brits do go on about weather. Tonlee, how is your arm?
0 -
jackboo - we are flirting with 100 degree days and continuous sunshine to I am sending you some via express sunmail!!0
-
Jackboo- sorry that you had to get hit with that email! Hearing that you have cancer and then processing it at first is enough. But, that being said, over the last 14 mo's since my dx (almost exactly yours), I have had enough time to think about a bucket list, take inventory of my life, learn what really matters and what I want to accomplish while I'm here. In a way, it's liberating! In a weird way, we have been given a gift makes us evaluate our lives. Others don't get this time. My brother-in-law died 5 mo after dx of melanoma (one week after my dx) saying that he still had more things to tell my sister-in-law. Broke my heart.0
-
Jack,
I'm not sure if you meant to direct the arm question to me...lol....my hands are still numb every morning....but I coulda swore that was on the Femara thread? I'm losing track!
0
