ER-, PR-, Her2+ Roll call
Comments
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maybe It is more likely to be an indirect cause, rather than a direct cause from Herceptin, as I also found that it was difficult to get a strait answer from either the oncologist or oncology staff in general because they just dont know for sure yet, and there is so many other contributing factors, so they say little about whats in relation to what ! the same goes for Chemo-Brain, we all experience it in some form but still they dont have an official terminology for it, or even acknowledge it at all, so is joint pain related to Herceptin plus the 5 year results from phase 3 and 4 are still being released, I think !!!
I finished my 3 weekly, one year Herceptin infusions 2 mths ago and doing ok, but now gone on to participate in the Neratinib drug trial after Herceptin and dont know what pain is related to what now !!!
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Hi All,
I've been lurking for a couple of weeks, and am thankful for all the insights people here are sharing. The past 7 weeks have been very hazy for me - first visit with surgeon was a nightmare and he sent me straight to an oncologist, saying I needed chemo first to shrink the tumor, and he felt that it was larger than the biopsy indicated (he was wrong). I had not seen my path report prior to the visit, but had been led to believe that my cancer was just your everyday run of the mill tumor and the surgeon would just come in, scoop it out and I'd be back on my way again - the surgeon painted a much different, and much more bleak picture, and by the end of the appointment, I was convinced that the surgeon thought I was going to be dead within six months.
After an MRI and abdominal US, I met with my oncologist, who was much more optimistic and explained things more clearly. He did not sugarcoat anything, but I left his office thinking maybe I wasn't going to die right away. Nonetheless, no time was wasted getting me into treatment. I started my first of six rounds of TCH (taxotere/carbo/herceptin) on August 18. I will have surgery probably in January, so will not have the official "staging" of my cancer until then. My current IIa stage is an estimate based on the MRI and US results, and neither surgeon nor oncologist were able to palpate any lymph nodes. I hope and pray for no surprises on that front...
I've tolerated my first two treatments relatively well - mostly just insanely tired and emotional a couple of days afterwards as the steroids wear off - no nausea/vomiting at all, which is a blessing. My hair started falling out around day 15, and within a week I looked like I had mange, so hubby buzzed my head for me. My one setback with my first treatment was that a week later my white cell count plummeted, my fever skyrocketed, and I ended up in the hospital for IV antibiotics. I now get Neulasta, so that wasn't a problem the second time.
I find myself actually looking forward to my next treatment - the sooner I get it, the sooner it will all be behind me. I'll still have surgery and radiation to contend with, and will continue on Herceptin through next summer, but at least I can look forward to having my hair grow back. I hate looking like an old man! Cheers!
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Hi MizMarie, welcome, I am relatively new to this sight also, I don't post too much but read alot too, also be aware that every one is differant as you have probably worked out, so try not to take on board peoples problematic findings ! One thing I learnt early on is, not to compare your self to the next person, other wise you will scare you self silly. Your stage in treatment is at a sensitive time, but sounds like you have great support. I hope that when your hair went you felt relieved like I did ! There was such a build up to it that when it all dropped out I thought, well thats over with now, NEXT and on I went, did the warm head beanie, scarf and big earring's, make-up thing, I didn't worry about wigs, after a while I thought who am I kidding and what am I hiding from? too itchy anyway !
like you I had neulasta also, 24hrs after ever chemo session, it will see you through all your chemo with out delays, as that is what is important to complete the treatment format as intended for you, keep an eye on those HB red cell haemoglobin's too, I almost made it to the end of Chemo, but didn't quite get there, as most women finish with out problems, but I didn't, right on the last infusion, dam it.
Take one day at a time, its good to have knowledge as a weapon, but also give your self healing space, you will be just fine, Take Care
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Bump
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Please add another member to the club! I had my first TCH 2 weeks ago, with my next one coming up next Wednesday. I get Herceptin only on the in-between weeks. I just feel a little tired, achy, and get a headache from the H only. Nothing compared to the TCH!! But even the TCH is tolerable for 6 treatments, I think. My WBC tanked after my first TCH, so I'll be getting a Neulasta shot next week. The leg/arm/back cramps and pain were so bad with the TCH, I can't imagine that th Neulasta could make it much worse. For me, it was like a bad flu, with no fever. I will be taking Clairtin, just to be safe. At least the pain doesen't last for too long, just a few days.
Oh and I had a BMX & SNB August 16. More lymph nodes removed Aug. 30 (all clean). Began Chemo Sept. 14. No Rads.
I love having a place to see so many success stories. Thank you all!!
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Kelliregi,
Good luck as you start your journey. This is a great place to be. The women here have a wealth of information.
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Just dropping by to say "Hi". It's been about 3 years now, so I don't read these boards very often anymore. After 3 years, it seems a bit like a bad dream except for the lumpectomy scar that proves it wasn't. I just had my annual mammogram which is mildly uncomfortable for the right breast but pretty painful for the left which had the lumpectomy. It's a small thing, but I wonder if that side will ever lose the extra tenderness.
Kelli, there is a very helpful thread in the chemo part of the board for women on TCH. It's title is taxotere, carboplatin and herceptin.
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Thanks, blue dasher. With 5months left of every-3-wks Herceptin and 14 rads to go, I can see the light at the end of the tunnel - it's so good to hear from a woman 3 yrs out of the tunnel.
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Blue congratulations on 3 years. Here's to many, many more.
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Blue congratulations on 3 years. Here's to many, many more.
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Hi Jaimieh - it's good to hear from one of my chemo buddies.
Jackifp, I'm 2 years out of the tunnel. I went into the tunnel 3 years ago. Finished Herceptin October 2009.
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Thank you sewingnut and bluedasher! I found the TCH thread and it really is helpful. Congrats bluedasher and thank you for reminding us that there is light at the end of the tunnel.
I go for a TE fill tomorrow and my 2nd TCH on Wednesday. I'm hoping for less SE's, but prepared for more. Much less anxiety this time around.
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HollyinMich, I just finished chemo on Sept 16, 2011. I had follow up MRI and PET on 9-30-2011. The MRI showed only a 10%decrease in the size of my IDC. I can't remember what it said about the DCIS and I haven't gotten the results from the PET yet. I was very disappointed to say the least. I'm scheduled for BMX with recon on 10-28-2011 and now I'm so worried that they may not do it. I'm very worn out with all of this. I'm not a negative person, but it is sure trying to creep in on me.
denise
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deniseday - I am amazed how many more women are getting chemo before surgery these days. The doctors are always changing up the protocol to find what works best. I don't think they would postpone your surgery....0
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My place primarily does Chemo first, then surgery.
that way they know if the treatment is working.
They also do a ton of clinical trials as it is affiliated with a teaching hospital.
I had a co-worker also get diagnosed with same path as mine, but instead of TCH, she got Taxol and Neratinib only. HER2+ and no Herceptin, just a year of Neratinib. It worked for her.
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Wow, that means she may not have lost all her hair ! amazing that if the raceme works then that is the future they are talking about, fighting breast cancer with out the invasiveness of conventional chemotherapy, even though Taxol is an old hat, but one of the ones that covers a small amount of the blood brain barrier and better tolerated for the most part. They offered me adjuvant therapy, but I remember steering away from that at the time but wish I hadn't now, as the old saying goes, "If I knew then what I know now !!!
also while Im on the learning curve, Is it just my imagination or, am I reading on a regular basis that many women end up with a IDC tumor after also having DCIS ? can anyone tell me if they are directly or indirectly related to each other or a flow off mutation from DCIS ! I never did get a direct strait answer from any medical persons including oncology when I put the question to them on a few occasions past.
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I'm also doing chemo first, and frankly, it's a bit nerve-wracking because even though I had no palpable nodes and the MRI showed no node swelling, the question of whether the cancer had spread beyond my breast remains unanswered until surgery.
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Hello all, I fit into this category as well. But I opted for surgery first and chemo after. I chose this because I was going to end up with a mastectomy either way so I didn't see the point. I never considered that I would never know if the chemo works. This bothers me a bit. I had four surprise nodes at surgery. I finished chemo in January and finished Herceptin three weeks ago. Today was my first day without having to get Herceptin. I am very worried to tell you the truth....but hope with time I will feel better.
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Kathleen, There is some uncertainty either way. If you have chemo before surgery and it elimnates all or most of the cancer, you get to know that the chemo you had is very effective for the cancer cells you had, but you don't know your exact stage. If you have chemo after surgery, you get the most accurate stage information but you get less certainty about how effective the chemo was for killining any stray cells left behind.
For example, based on the imaging before surgery, they guessed that I might be stage IIa (if my lymph nodes tested clear). If the SNB found cancer cells, then I'd have been stage IIb. After surgery, we found that my lymph nodes were clear and the IDC part of the cancer was less than 1 cm - I was stage Ib. The rest of the lump was DCIS and a benign cyst. So I get to know that they caught my cancer early enough that it was unlikey to have spread.
In some cases they do an SNB, then chemo, then the breast surgery - then you at least get to know what your lymph node status was and can use that to guide further treatment, but it means two surgeries instead of one.
KakaCath, are you asking about women who have both DCIS and IDC at the same time or who have DCIS and then later have a recurrence that is IDC. I haven't heard of the latter being common. Ductal cancer starts in the duct. As long as it stays in the duct, it is called DCIS (ductal cancer in situ). As it grows, it may break through the duct wall and grow outside the duct. The cancer that is outside the duct is IDC (invasive ductal cancer) because it has invaded non-duct tissue. So usually when there is IDC, there is also some DCIS.
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Thank You so much bluedasher for clearing that up, It was your first guess. The reason I asked is because I can not believe that 3 radiographers 2 of which where Doctors insisted that my IDC was a cyst at first, and to leave it for 3 months ! I had wide spread DCIS calcified clusters in 2 locations around 9 o'clock with a 1x 2cm and a 1x 1cm tumor at 2.30 & 3.00 o'clock. I originally thought I had 2 separate cancers because at the time of the DCIS sterio-core biopsy she was so adamant it was a cysts ! I had a gut feeling they where not, and after my worried nagging, she finally agreed to biopsy it while taking samples of the DCIS. I hope this helps even 1 lady out there in a similar scenario, I have been wanting to put this out there for a while now, we all have to be so proactive at that crucial time of diagnosis !. 3 extra months would of been catastrophic for me at this point in time, my HER2+ mitotic activity score 6 mitoses with comedo necrosis, dead C cells presant, its DNA well defined at that point, So one may ask why do many radiographers not know this possible connection, even at the very least be cautious enough to investigate further, sorry for ranting, thanks again bluedasher cyber hugs.0
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marjie--- Yay!!! he did not postpone my surgery. He said although he would have liked to have seen more response to the chemo, the PET scan showed no activity so therefore he did believe that the chemo worked as far as killing the cancer and preventing spread to lymph system.
Mizmarie--- Having the chemo first is very nerve wracking, especially when I found that I did not have much decrease in IDC tumor size. I was really doubting the decision to proceed this way. I have tried to have faith in my doctors as they are all highly recommended, but it isn't always easy and I'm so ready to get this off of my body.
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Good news, deniseday! It will be so nice to have that beast out of your body!
I also have second-guessed the chemo-first decision for myself, although, today, I can say with a little more confidence that my tumor does feel smaller - or at least flatter that it was in the beginning.
Here's to a Happy Monday, Ladies!
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deni & miz I think you guys are amazing and have taken the best option, I sometimes wish I had the courage enough to of taken the adjuvant therapy option, rather than delay surgery from diagnosis to risk further lymph involvement ! I remember clearly that I felt like having had a live deadly spider sitting on my breast ! I just wanted it OFF like yesterday, right now just cut it off. I so respect and admire your strength of patience, it will in the long run pay off
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Hi everyone, I was reading on the herceptin side effects thread , and they were discussing an article that suggested women who get there menstrual cycle back are at a higher risk for reoccurrence of their BC. Just wondering if anyone has heard this? Since we Er/Pr- people don't take tamoxifen I don't under stand why return of hormones should be a negative risk factor otherwise wouldn't everyone get tamoxifen?
Also, I was wondering if anyone out there are starting to get signs of hormones coming back. I haven't had my period return, but my hot flashes have all but gone away, and a normal vaginal discharge which had completely disappeared after taxol
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Slainte -
I hadn' heard anything like this before. My period came back irregularly (and not right away), but I have no idea if that means any correlation with my recurrance. My onc certainly didn't ask about it.
My PCP, however, has been watching my hormone levels, checking about every year or so to see if/how quickly they returned to previous levels. I'll ask her about this at my next appointment . . .
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My period came right back, and has been going strong ever since. No Dr has ever said anything about it and I am three years out from chemo. I dont see why it would matter with us being ER-. There are girls that go on to have babies after treatment - I am 41
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I'm not expecting my period to come back...I'm 48 now, and I still get hot flashes although they are nowhere near as severe as they were when I was on chemo.
Christine - so far I have no signs of any hormones returning....like you I completely lost all vag discharge. That baby is dry as a bone
TMI I know!!! I have tried using Replens then it goes to the other extremem and I feel like I need diapers.0 -
I haven't had any periods, but I have an IUD. Actually, my onc wants it removed. I'm not sure why since I'm hormone receptor negative, but it was a good reason to convince my hubby into a vasectomy. And boy did he whine about that!!!!
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I got my periods back when I finished all my treatment in 2003...but it's now been irregular for a couple of years...get hot flushes but as I'm nearly 50 guess that's to be expected:) So undecided if I should have my ovaries out as although I wasn't hormone receptive I have a family history of BC and Ovarian cancer...so many decisions...seems I probably should as I'm at the age of menopause anyway...anyone else had to or thinking about having ovaries removed?
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Haven't posted for awhile but wanted to reply, it's been 6+ years now and still doing well. Tumor was > 3cm , Er/Pr - , Her2 ++. It took awhile to feel "normal" ( over a year) after treatment but it does happen....
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