TRIPLE POSITIVE GROUP
Comments
-
Karen, ugh, I'm so sorry to hear that! How the heck did they find it? Also, that survival rate -- is that based on finding it a lot later than they found yours? How odd that having bc actually was a good thing in your case.
FBN, have a great time and don't worry about giving back. At some point you'll be a veteran and can chime in with reassuring words to those who come after you. I'm happy for you that you have such a supportive husband.
0 -
bren, sorry I read these posts out of order -- so sorry to hear about your mom. (hugs)
0 -
MakeLemonade - once my port was all healed up I rarely ever noticed it - and I took my arm to the extreme end ranges in all planes almost daily (I teach dance part-time). I was concerned about it limiting my range for dance, but I had no problems once it healed up.
I did always have a weird numb sensation if I directly palpated over the port or right around it.
0 -
LM I worked about 2 days after my port, and when I used that side to pick up stuff it felt like someone punched me there. But Like moon says after a few days of that never felt it again, I still have it and forget about it til they access it.
0 -
Karenrm
So sorry I missed your post . Skipping around the forum is not working for me. Better off waiting till I can devote the proper time!
I am so sorry to hear of the new dx! I am wishing you are able to summon the strength ...and knowing you somehow will..to battle on some more.
Best wishes....
0 -
ML.... don't even know it's there. Takes a few weeks to not feel your bra rub or pressure sensation. At least for me.
Thanks for the herceptin feedback ladies!!
0 -
thanks for the feedback on the port! Appreciate it - and was hoping this was just temporary :-)
0 -
MakeLemonade Yes you feel it and have some discomfort in the beginning because you are healing from a surgery... that will get better over time. Yes I would feel mine when I did certain things. I am quite tiny on top with no fat so I'm sure that is part of the reason but it wasn't painful. I just noticed it. They even gave me a kiddy port because of my size. I do believe the newer ports don't stick out as far as mine did. This was installed in Oct 2010. Deported Nov. 2013. Now all back to normal.
0 -
Hi, Cypher. I actually found the thing myself. Had stuffy, runny nose for several days and (yuck--excuse the graphic nature of this) blew my nose really hard to dislodge what I thought was mucus but was actually part of the tumor 😝. Bled like a son-of-a-gun. Took glob to doc to have it analyzed. Biopsy showed highly necrotic, ulcerated tumor with few viable squamous cancer cells to analyze. Since the sample was so degraded, I have to have a real biopsy that will further analyze cells and maybe determine how invasive it is. Since all my info is basically what I've read online, my statement about survival rate is based on reading articles--just enough knowledge to sound ignorant. But so far, from what I've read: 1. Simplified, staging is based mostly on number of locations of tumor (one=stage one; two=stage 2; three or more regional locations=stage three; invasion (depending on original location) into eye orbit, CNS, palate, throat, lungs, nodes=stage four. Even stage one often has invaded nearby bone. 2. Treatment is usually surgery with or without radiation and rarely chemo. 3. It is very rare: only about 2000+/- new cases per year, so advances in treatment lags behind treatments for other cancer like bc with over 200,000 new cases per year. Studies often only include 20-100 people and are retrospective. 4. Better outcomes happen with operable smaller tumors with highly differentiated cancer cells (grade 1). Even so, results often seem random. I think, like with bc, researchers are noticing certain relationships with tumor characteristics (like HER2+ in bc) but haven't yet found therapies to improve the outcomes for those cancers (like Herceptin and aromatase inhibitors). Authors of articles often use terms like "poor outcome" and "high rate of recurrence." Recurrence rates on average seem to be about 20-40%, even for stages one-three except for the best case scenarios (ie. highly differentiated cells).
I learned all this in three days, so take it with a grain of salt--although I did enjoy showing off! 😊
0 -
moon, what you are saying is nothing we have not already discussed. Once we see how advanced the cancer is, I have a feeling that mom may decide not do any treatments at all. With her history of crazy drug reactions and her skin being paper thin, I really don't think she would fair well with either chemo or rads. We have told her we will support her whatever her decision is.
karenrm, what a crazy way to find a new cancer! I am so sorry you are dealing with another dx.
Lemonade, welcome and it looks like you are in my neck of the woods. My port incision was uncomfortable for the first week, then it was not so bad.
0 -
ok. Bren. I just had to mention it as a possibility. Sometimes people haven't gotten that far with their thinking yet. Hugs.
0 -
'The crisis of cancer affords the opportunity now, however brief or lengthy, to discard the trivial and shallow....fill every moment & relationship with meaning, intensity, & value'
0 -
ashla, so true... and a great reminder
0 -
Karen, ugh that sounds scary. Am really hoping it is very tiny and very early and that most of whatever was there was killed by the chemo. I hope you find a network of people like with bc.org to help support you. Obviously WE will but the knowledge base from the women on this website is soooo helpful, so I am hoping you can find a similar resource for this. Also hoping you won't need it for long! Anyway, keep us posted -
0 -
Karen and Bren, much love and many hugs! I'm so sorry to hear your news.
Ashla, your post made me cry. I think it is so true. I'm not someone who feels sorry for herself that much, but I've had some struggles with this battle. You have to keep going, and it is so nice for an MO to recognize that.
Princess, Herceptin alone is a breeze. I had a runny, bloody nose, but nothing else. Lago is right, your hair grows more slowly. No side effects for me, and I was finally starting to feel better as I got further out from the final chemo.
Lemon, I'm from Philly. I miss home! Welcome to the board. Ports are weird, but you'll get very used to yours and actually be glad you have it.
0 -
bren58
Sadly we humans ... Including me...tend to forget this. Seize the moment....
PBrain
There is enormous courage, bravery, kindness and nobility found in every post on every page in this forum! I remember what you went through ... Both the physical & personal . And through it all you made us laugh.... Love you!
0 -
Thanks, everyone, for the "hugs." I'll let you know what I find out today...
0 -
Karen/Bren: So sorry to hear your news.
Best wishes to you both!
0 -
Ahhh, Ashla, you made me cry again. Thank you!!! That is so sweet!
0 -
Hi everyone , haven't been around in a while will try to catch up on all posts.
I finally had bilateral mx with 6 Lymph nodes removed on the 3rd of this month .
4 drains still putting out , should come out on Friday when I follow up with PS & BS possible fill on that day also . Oh and lucky me after that I get herceptin n final pathology report .
Im experiencing challenges with the herceptin my MO thinks may be allergy to it .
I welcome any and all advice please .
Hope all of you are doing well , {{hugs}}
0 -
mom, I am glad the surgery is behind you. Hopefully the drains will come out this week. How long are they running the Herceptin? Some of us had issues when it was run in over 30 minutes as opposed to 90 minutes. The longer infusion time tends to have less problems. Perhaps that could be part of the problem?
0 -
Welcome to the other side momx2. Hope you will be DRAINO soon.
0 -
Mom, what are your symptoms of allergy to herceptin? Can they control them with the benadryl?
0 -
Got my port today - chemo has been delayed due to the issue with my left breast and the necrosis. PS cut it out yesterday and sewed me up - he says it should heal nicely now as the tissue all around had great blood supply. Should start chemo at the end of the month but I am going to get a second opinion on the regime from Moffit - have an appt there next Wednesday. Getting my muga tomorrow morning. I am exhausted and haven't even started chemo yet.
Hope you are healing SpecialK and hope all you other Triple P's are doing good. Pbrain I saw a hat yesterday that i think I am gonna get for chemo days - I think it may be a cousin of your hat LOL
0 -
linda - are you going to Moffitt on the USF campus or the one by International Mall?
0 -
Hey SpecialK I am going to the USF campus - my appointment is for Wednesday 23rd at 2 pm with the MO - do you live near there or closer to Macdill?
0 -
linda - I live about 10 miles from the Moffitt location at USF. Are you driving up by yourself or with your DH?
0 -
My Dh is coming with me I think - he asked for the time off - will let you know though - I think I will be there til dinner time - maybe even if he comes we could meet somewhere for a little bit of dinner?
0 -
linda - I am more likely to be available earlier in the day, but could definitely come over that way and meet up for coffee and a chat. Who are you seeing at Moffitt? PM me the name if you prefer.
0 -
SpecialK u sound good......GOOD
0
