TRIPLE POSITIVE GROUP
Comments
-
Hi Birdysmom!
I had neoadjuvant chemo, too. It wiped out the active cancer in my breast and lymph node, and I was able to get a lumpectomy. Hope your chemo works for you!
0 -
Birdysmom...Glad you found the group! Wonderful support and good advice from experience. I'm new too with so many questions and concerns...all these ladies have been wonderful. Good luck with everything. Hope your SE's are few and everything goes smoothly!
0 -
Kate,
I had a UNI because my BS and MO would not do both due to the poor state of my health. Had the 2nd 6 months later at the recommendation of both BS and MO. But-my path was and still is long and windy and not the norm.
Herceptin infusion times-mine were all at 90 minutes. I I had 17 of the 52 calculated weeks when my LVEF tanked @ below 30%. I started @ above 60%, dropped to below 40%, increased after a break to above 50%, then tanked to the never never land of heart failure and banned from H for life. Still on cardiac drugs. The plan was to recover my heart with cardiac meds, wean off, and be a happy camper. Nope. Everytime I try to wean off my shortness of breath increases. After stopping H my LVEF increased to above 40% then dropped back to below 40%. H is the life saver for those who tolerate-and that is most women.
ESDs and EBD-have been on all options. Gained weight, bone and joint pain, massive fatigue, more pain. Had breaks from 2 weeks to 3 months. Every time I went back on started again. Now when I go off for a break the symptoms do not go completely away. Again-great drugs for those that tolerate. I am really looking now at quality versus quantity.
Much love
0 -
SusanHG you are 3 years NED! That's huge. You have passed the time when most recurrences happen. You know there's a chance that you did enough treatment to remain NED.
0 -
I've been skimming some of the posts. I really miss connecting with you ladies! Not sure if it's the 5th year cancer-versary in Sept that brought me back, for the moment more consistently, or that a woman near and dear to me was just diagnosed triple positive at 38. She's a research nut and will leave no stone unturned. I told her about this site. Hope she takes my advice and visits at least once. The scans can't find her original tumor....just huge cancer in lymph. Anyone else have that here?
To all the new women. I am so sorry you had to find us, but thank God you did! After I did the majority of my research on BC, this site really helped me with the application of that knowledge. By reading those who have gone before, I knew for instance, right down to the day when my hair would fall out, what happens during the dreaded steroid crash, etc. (LAGO is a rock star!)
Currently, we are in the middle of moving. I love the new place, LOVE it. But the move is exhausting. My husband insists we do it ourselves like the previous 23 moves for the most part...But, 3 1/2 weeks out of spinal surgery, my back is not loving it. And I hope it's the move, but I've dropped those 5 vanity pounds that I usually have to really work to get rid of.....on top of not working out at all (just walking 5-7 miles a day). Isn't it ironic? Before BC, that would be reason enough to throw a serious party! Now it's all suspicion and narrow eyes.
Have a great day ladies! I'm back to the move!
0 -
Ha ha TonLee I'm no rockstar but thanks. What you did leave out is you were sure you get mets and you did not! Not sure if you remember that.Will be celebrating 5 years NED right before you on August 31st…almost September.
Thanks for starting this thread.
0 -
tonlee - sounds like your friend may have an occult cancer - it is pretty unusual but there are a few who post on BCO that have had it. If you put "occult" in the search box you will get links to a number of threads with posts from people in the same situation, I tried to link my search but the link didn't carry over. I am so glad to see you back - regardless of the reason!! And yay for our five years - mine is in September too! Lago was just ahead of us. You both had started chemo just before me due to my prolonged surgical saga - which still continues - I currently only have one implant, and I will be forever grateful for the support provided by both of you when I finally arrived on this thread. Hope the move is going well, but be careful and don't hurt your back!
0 -
Oh my!
Four of my guardian angels on one page in the forum ! Susan Hg, Tonlee, Lago and Special K!
All the girls who made my 'That was the year that was' and wished it wasn't ....easier to bear!
Hi all and great news that you're reaching the 5 year mark !
YIPPEE
0 -
ashla - how sweet! Good to see you!
0 -
We all will be forever bonded. Some day we will meet in person.
0 -
lago - all of us meeting in person would be awesome!
0 -
My daughter just had her geneti testing done at age 33, all was clear, bracca 1 and 2, but they told her to come back in 10 unless something happened prior to that? So what does that tell you? Get mammo at 35, and she is built like me so she will probably have dense breasts. They have her whole genetic map, but they don't know all the maps yet. As they find out, they will know more. She lives in the Boston area, so not sure which cancer research clinic did the test? So they are still working on cancer processing....
0 -
Hi.It's been a while since I have been on here. I hope everyone is doing great. I have moved to Florida a few months ago. I appreciate this group and the other threads. Definitely great support here.
Take care! Great group here now & back then.
Lisa
0 -
Good morning to all. Well I had to shave head Sunday or at least hubby did it for me. I cried but was good after it was done. Right now I have a buzz cut but I am sure this will be gone soon cause pieces of it are falling too. I go for second TCH tomorrow. Praying all goes well. Have a great day everyone!
0 -
It grows back Gretagirl!!
I always treated each completed chemo as a small victory! I will be thinking of you tomorrow and sending you lots of prayers and good vibes!
0 -
Sending you good vibes, Gretagirl.
I start Thursday with TCHP and, other than the bizarre and scary dream I had last night about having a terrible reaction to the infusion--my brain showing anxiety even when I feel okay while I'm awake--I'm ready to start.
Question for all: any advice for dosing dexamethasone? It says to take two tablets twice a day on the day before, the day of, and the day after chemo, but that could mean almost anything. I have a call in to the MO, but thought I'd ask the experts.
xo
-kate
0 -
I was told two tablets in the morning then 2 tablets 12 hours later. I do 7am and 7pm. Just took it a couple of hours ago.
0 -
Gretagirl -- I hated buzzing my hair off, too. Best of luck with your second infusion!
KateB79 -- My dosing was like Gretagirl's. MO's all have their preferences; calling in to the office was a smart move. Dexamethasone is a steroid, and often interferes with sleep. You might get some sleep aids ready if it keeps you up. (MO prescribed Ativan so I could get through the "steroid insomnia" nights.) Best wishes for your first infusion!
0 -
Gretagirl call your MO to be sure about the pills.
Jerseygirl927 Boston, she had some good choices. Brigham an WIlliams/Sidney Farber and Mass General.
0 -
Kate, double-check with your MO, but I took one the night before, and then one pill morning and night the day of and the day after chemo. I had terrible crashes after stopping the steroids each time, and we made a plan (by round 5 or 6) to taper me off more slowly.
0 -
Thanks, ladies! The nurse echoed your good advice--she said to take two in the morning and two twelve hours later. Here's hoping I'm not up all night or that, if I am, I'm productive.
0 -
kate - I didn't have oral steroids for my first three infusions, as my MO likes to limit them if possible and I got them as a pre-med on the day of treatment with my infusion. I developed a rash after #3 so he then prescribed them in the before/during/after dosing for the remaining three infusions. I actually enjoyed the energy boost and was productive - I made sure I was caught up on laundry, bills paid, food cooked ahead, house clean - all courtesy of the steroids, lol! I figured I was going to be laying around a bit afterward so it didn't matter if I was tired from being awake for so long. Like Cassie, I did have issues with the crash from the after-infusion dosing, so I halved the pills and stretched them out for the after-infusion doses so I could ease off instead. If you experience the crash ask your MO if you can do that.
0 -
Hey Gretagirl. I get my second TCH on Thursday so we are close together. 😊 I too had to shave my head last week. Did it on Thursday. It was sad but did ok. Glad things are going ok for you. Hope #2 goes well. Regarding steriods...I get the steroids as a premed. Never had the pills. When you talk about a crash what does that entail? I get very sleepy after about day 2 when the steriods wear off but is there more to be prepared for?
0 -
ElaineTherese thank you!
Lago the way I take the decade on is my paper work from chemo class. I also take two am mad pm the day following chemo then off of them. So far I haven't had sleep issue or crash feeling.
SpecialK I do bet an energy boost too! Cleaning house now!
MMay I saw we close to same schedule. Hope yoursecond goes smoothly
0 -
sorry Lago that was supposed to say decadron!
0 -
Ah the decadron rush. I started at 8mg (2- 4mg tabs twice daily) day before and day after, given 12 mg iv as part of premed. By 4th I was cut back to 2 mg twice daily. To avoid the crash, which is no energy, sleeping, opposite of the rush. :I did take 2mg daily for 2 more days. At the higher dose I had tachycardia with chest pain and high blood sugar with sweating along with shortness of breath (thought I was having a heart attack) I did go to ER. Dehydration. It was Memorial day so did not call MO.
Will do laundry when I get off from work at 11pm.
0 -
My onc had me take the steroids the first infusion - they are to make sure you do not have a reaction. After I showed no reaction the first time, I did not have to take them but I think a small amount was included with the infusion thereafter.
0 -
Birdysmom--we have very similar diagnoses, though my tumor was 5.5 cm. and I had it surgically removed with BMX prior to chemo. My doctors didn't realize how large my tumor was, nor did they anticipate I'd have so many affected nodes. As it turns out, surgery was a good call, because my tumor was not attached to the breast wall and was (relatively) easily removed. Like you, I was diagnosed with IDC in June, triple positive, stage 3c, no family history of BC...but I'm 45, not 44.
I have a Jewish background on my dad's side, but my genetic testing turned up negative for any mutations, though I did have a variant of unknown significance in the CHEK2 gene.TonLee--thanks for the encouraging words! Good luck with the move!
0 -
Any of you had TCH (maybe with P) and NOT had problems with white counts? My MO doesn't want to give me Neulasta/Neupogen unless my counts crash, and she's not sure they will. I'm on the fence about taking this chance; I'm a university professor, surrounded with college kids (who are less petri-dish-like than first-graders, but not by much), so I thought I'd kick this to you as a question.
re: dex . . . Took it this morning, and feel mildly tired, but certainly not a rush. I guess we'll see what happens later today.
kate
0 -
I had TCH, and white counts dropped a bit but had neulasta only two times later in the regimen (make sure the nurse warms the syringe, or gives it to you to warm in your hands a few minutes before injecting so it doesn't sting so bad going in). I volunteered at an elementary school with my kids at the time, and never got sick.
0
