ER-, PR-, Her2+ Roll call
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Congrats, Shelly! You are a hero to so many women! Marjie, I had chemo yesterday and met my my MO. I know that feeling. She wants to stop the decadron because of the acid in my stomach. I begged her not to, and she agreed to cut the dose and days. I really wanted her to increase the prilosec to twice a day, and I may call my family doc. My WBCs are 7.5! Love that. I'm dreading days 3 through 5 and hope I have better control over it this time. My MO said the Aloxi works for 3 days. I think it's more like 2, and I don't want to find out if the Emend works or not, so I will keep taking that with 2mg decradron. She said to start the zofran on day 3 and the ativan and compazine immediately. I bought some sage tea for nausea, and will keep hydrated. Hope everyone is feeling ok!
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Just been diagnosed on June 14, 2011. Had a lumpectomy and nodes removed. Will be starting Chemotherapy/Herceptin treatments in a couple of weeks. It is helpful and hopeful to hear experiences from others going thru the same thing. Wish everyone out there the very best.
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I was dx 5/2/2008 at age 62, which makes me 3 years out now. Lump after neo adj AC x 4, Taxol and herceptin X 12. Response was "complete pathological response" - tumor shrunk to nothing, started out at 6 cm. Then Herceptin every 3 weeks for total of a year. No lymph involvement. No radiation.
If you are having a lumpectomy, take a pillow, beach towel, or blanket to pad your chest from the car seat belt, and for a while after the surgery. Welcome to the newly diagnosed. I cannot tell you how sorry I am to hear of your diagnosis. Hugs and Blessings, Nancy
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I haven't checked in on this thread in a while, but I just wanted to report that I finished chemo and when they did pathology from my bmx they found I had a complete pathological response - no cancer, anywhere. I also have IBC so I am now entering my 2nd week of 7 weeks of rads despite the results, but that's ok. We - - + folks often respond very well to chemo!
Maybe it's just optimism but it seems we're in a good position with our hormone negative HER2 positive status. They say the hormone positive ladies have better options but your body can produce estrogen in unexpected amounts or you can ingest estrogen-like chemicals so it's hard to control that. (Not to mention other things, like alcohol doesn't seem to have an effect on our cancer and we don't have to be in a forced menopause at the age of cancer onset.) The Her2 drugs have obvious and huge drawbacks but still it seems like they're making the fastest progress with that receptor.
So I'm happy to be - - +. And hey, might as well be, right?
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Welcome to all who have joined.
my place also did Chemo first - that way they can tell if the cancer is responding or not. At surgery, I was also complete pahological response.
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Because I have IBC, stlcardsfan. It stands for Inflammatory Breast Cancer, which is the most aggressive and most frequently fatal of all breast cancers. So the treatment is highly aggressive.
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I also complained about joint pain, and my MO suggested counseling....Stumbled on a site here where there are LOTS of people having the same or similar experience. So happy to discover that I'm not going nuts! Now, if someone could just convince HIM of that, I'd be really happy! I'm really tired of feeling cruddy most of the time!
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Lalalu -- I had joint pain which did go away once I finished Herceptin (well some months after, really, but its nice to be free of that pain). So hang in there! When do you finish your Herceptin? And sorry to hear that your doctor suggested that it was in your head -- not cool.
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Lilah--Didn't start Chemo until Jan. 2011 due to other health problems (with my neck and back--lots of tests)so won't finish Herceptin until Jan. 2012.....Thanks for the encouragement. Can't wait for this to be over and to feel like ME again! Usually, I'm friendly, outgoing, and easily take things in stride.
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Marjie~ Ask your doctor's and nurses what their SE's were from herceptin....grrrr.... Joint pain is a real SE.
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im starting my chemo tomorrow..so happy to read you guys , actually felling kind of happy to be HER2+
.Hope i can be a survivor for many years !! 0 -
Dear Paulamati
Big hugs to you. Don't be afraid. As my mom says chemo is doable. Just be positive to get the best results from it. As I read somewhere for gals with negative hormone receptors chemo works best.
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Hi all~
Just had to comment on the joint pain...
It was a year in March that I finished chemo and just this past weekend I realized when I bent down to help tie a shoe, there was no joint pain! This seems to have been a long time for me but I am also anemic so I don't know how things figure into the equation...
Hugs and good thoughts sent your way.
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Bump
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bump
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Hi...new here just started AC chemo last week so far so good no side effects hoping it stays that way! 3 more treatments of AC then I will start taxol along with herceptin. Glad to find this group!
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HI All
I just found this thread. I am doing chemo first - TCH - I have completed 3 or 6 session. My Drs can not feel my tumors which is great news that will make my surgery easier.
Has anyone else on here did chemo first?
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Once again I am relieved to see others with joint pain. I was starting to think It's just me or that I am a wimp compared to everyone else. I have even been worrying that my pain is due to progression to stage IV with bone mets. My joint pain and fatigue have actually been getting worse with each month of hercetin. Now my back is hurting too. I have to say that every joint in my body hurts at night. At night my pain is now worse than it was with the docetaxel. Now I'm counting down until Nov when my perception will be finished. Thank you all for confirming that I'm not completely crazy. Now I just wonder why all these doctors don't believe joint pain is a SE from herceptin????
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Lilah- I have been traveling so have not been on here to answer your question.. Yes, I had a neulasta shot after chemo treatments 2, 3, and 4. It has been 4 years and 5 months since the end of AC chemo and 3 years and 5 months since the end of herceptin. My WBC count has never been more than at the bottom of the normal range and does dip down below normal at times.
On the joint pain, I had joint pain while on herceptin. It slowly disappeared as the hercepton cleared from my body. Herceptin has a very long half life, so it can take up to 6 -12 months after your last infusion for it to all be gone from your body.
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My herceptin is every 21 days and I have noticed that with each tx, my achiness gets worse. It's frustrating but I am just learning to deal with it. Last time, my onc said it was hormonal because I was thrust into menopause from chemo. I have done some homework and that could be part of it, but I also think it's from the herceptin as well - especially as it seems to follow and increase in 21 day increments!!
At this point, it is getting quite severe some days but I am managing it with Advil, Tylenol and Aleve. I don't care anymore what is causing it, just that they don't minimize it!!
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Hi all. Thought I'd check in here as well. I was diagnosed 5 years ago, so I'm long past chemo (TCH) and everything else. Heart problems lasted for about 2 years from the Herceptin (had to stop it after about 6 months), but I'm now normal (well, as normal as I ever am (*laugh*)).
But... No recurrance, no problems to this point. Yippee.
Wishing everyone else here the best as well.
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Hydrating for #3 tomorrow. Hope everyone is doing well.
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Janet11 - thanks for checking in. In the scarier moments of this road, it sure is good to hear the voice of a woman 5 yrs out.
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Hi Ladies, I can't believe I have been on here for a year and just now found this thread. My last herceptin is July 29th YAY and I have had lots of joint /bone pain which my onc. denies is from herceptin but I am positive it is. I had a long busy year with this BC crap almost all done so excited!!!
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Hey all AC #3 done! Funny, I hydrated yesterday and I was dehydrated today! My WBCs dropped, too, so neu-nasty injection tomorrow
Other than being tired, I'm good! I had a hysterectomy last year, and stopped the flashes until chemo started. They've come back with a vengence! Hope a;; are SE free! Iowasue, happy to hear your news!0 -
MargieC - I also did chemo first. 6 rounds. By #3 there was a noticable difference in my mass. By #4 it could barely be felt, and by #5 they could not feel it anymore. At surgery, path report confirmed total chemo response.
Janet11 - thanks for popping in with the good news!
Herceptin and joint pain - Yea it does happen. I kept a log all thru chemo and Herceptin only. The farther out I got from each H, the better my joints felt. A few days after H treatment, I was back to aching again. I did find that exercising seemed to help. My exercise was walking on a treadmill or outside when it wasn't so cold. Nothing extreme, just getting the joints moving. I had my last Herceptin 12/15/10 and I remember in about February 2011, bending down and not aching!
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Amethyst - I was diagnosed 6/20/11- starting 18 weeks Taxotere Carboplatin Herceptin then Bilateral mastectomy - then rads. You?
Anyone - Did you have pain in your breast at site of BC? I have it there and then pain in random lymph nodes that comes and goes. I also have a pain in my opposite breast where the scans do not find cancer (breast MRI, PEM scan) but it feels just like the cancer did/does. Both are getting a little better, which makes me think chemo is working? #3 of herceptin today, start round #2 next week of TCH
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I have significant pain in the BC breast as well as some pain in the other breast. MO said it's probably the chemo working. That's what I'm hoping!!!
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Hey Ladies! Just had round two of Taxol/Herceptin. Happy to report my lymph node has noticeably decreased in size. Just knowing this much has happened with two treatments has been such a relief!! Not yet feeling any SEs from chemo. Will be losing my hair in 10 days my doc told me, so have already ordered a wig and cut 7 inches off my hair in preparation. Thought it would be really emotional but it wasn't. Being with really good girlfriends to make me laugh helped. Don't think it will be so great when the hair actually falls out. Just keep trying to accentuate the positive!
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BringOn, For me the hair thingy was a problem for 2 weeks before starting chemo. Now it doesn't bother me at all and I have REALLY long hair for an old lady! It's still me. Accenuate the positive! It's only hair, and will grow back. So glad you aren't feeling any SE!!!
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