TRIPLE POSITIVE GROUP
Comments
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fluffqueen01 I am also of the opinion that you do everything you can to fight it now. Chemo camando mode! Kick it's butt. I ended up with a blood clot from taking Tamoxifen, so Doctor said I needed to stop Tamoxifen or stay on blood thinners the entire time. I am staying on both to give myself every little percentage point advantage. Plus, I am a worry wart so if I hadn't done everything they asked me to do I would be fretting over it everyday. I'm sure once you talk to the next doctor your decision will be more clear. It is all so overwhelming when you are first diagnosed. Hang in there!
Lisa
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Fluffqueen-I too am along the school of thought to do everything you can. I did bilat mast (profil on good side), chemo, rads and am currently taking tamoxifen. I was borderline on the rads but chose to do them. I am young and I am a worrier. So for me, this was the best route to take. GL!
V
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Smile on- my last chemo was nov 22nd. In end of Dec my hair started to grow really fast, including on my legs and upper lip (LOL).
so far I look like im somone inthe military, really short hair, spikey, I kinda look macho. So given how fast its going, im going to guess that mid march/end of march, it should grow another inch and be enough to go commando.
A friend of mine gave me some scalp oil which i apply every day and massage my head. Ialso am taking the maximum dose Biotin!
The rads did a right number on my skin, i am now peeling........the 2nd degree burns are starting toheal up
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I can totally relate! We go through enough with the chemo, surgeries rads...but adding insult to injury my hair "down there" came back with only a few strands. What grew back plenty thick was what will be seen outside a bathing suit right at the groin so I still have to shave the bikini zone. Geez!!! My eyelashes are still super thin and I finished chemo in March. I used latisse, but it's expensive and a pain to do nightly. Hoping things will balance out soon!!
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geewhiz I think my husband might be disappointed if all grew back down there
So far nothing new has sprouted. 0 -
Hi Girls
I'm going in for my second Taxotere and second Herceptin on Tuesday. The first of each of these was done on different days so that if I had a reaction we would know what I'm reacting to. When you have the second infusion are they done together? Or do you get one and straight after get the other (like I did with FEC)?
Trish
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Trisha-Anne - my daughter gets THC starting with H so we have time to get the cold caps on her head for 50 min, then the H bag is swapped out for the T and when that is done the C bag follows, then the after care blood thinner.
Very wise of your doc to separate the two on the first go to monitor which caused what side effects. Good luck.
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Trish Anne...I did FEC too! I don't think there are many of us on this board that have done it. I got my Taxotere first and then the Herceptin drip, 1 bag at a time. For me they didn't start the Herceptin until my 2nd Taxotere for the same reason of watching for allergic reactions and knowing what was causing which side effects.
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hi everyone, I know of a co-worker who had a bil MX (dont know her stats) she didi the chemo but for some reason skipped the rads, she is now a stage 4 mets to the lungs. I too will do everything sthe docs recommend and not skip any steps. I dont want to ever do this again. Had a setback this week, it was my last chemo, daughter came home from NYC to celebrate with me and I couldnt get treatment cause my bld count was too low. Will re-check them next week and hopefully get the last chemo! AARG!
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you try to forget this nasty disease, but it really puts a damper on things when ppl (who dont know I have BC) tell me about family history of bc and mention only those who have died.... JEEZ
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question for all u ladies, when i was diagnosed i had a mri to breasts/ abdominal ultrasound to check the mid section organs to make sure it didnt spread, and had bone scan chest xrays, but no one checked my brain.......how many of you when u 1st were diagnosed had brain scans?
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Red-
My Onc doesn't give scans at all unless there are severe symptoms in those areas... I haven't had any scans.
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redninrah I had various CT/Bone and MRI but no brain scan. I had the scans before surgery I think because my BS thought with the size of my tumor, HER2+ status, Grade 3 that I could have mets. If that were the case we would be doing chemo first. We also had 6 weeks before my surgery so there was time to do it.
carberry I did not have Rads because I was in a gray area. My Rad onc felt that my treatment was aggressive enough and the additional stress to my body from rads wasn't worth it. Remember though I am getting herceptin, anastrozole (generic armimidex) on top of my 6 rounds of chemo. Your friend might not have had as many rounds of chemo or some of the other treatment. Every case is individual.
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Thanks motherofpatient and Smile_on - I thought it would be done one after the other, I'm just getting impatient, and wanting the infusion time to be less lol I'll just have to wait till I'm on Herceptin alone I suppose.
Smile_on - we have quite similar dx - although you were dx a couple of months earlier than me. I don't think there are too many ladies in the US that get FEC - but it's quite common here in Australia I think. FEC was a piece of cake compared to Taxotere though, I'm starting to get quite anxious about going in for the second treatment on Tuesday, the first one really knocked me around.
redninrah - I also had CT/bone scans when originally dx - but no brain scans or MRI. I did end up having a brain scan after surgery though - when I went in for my first chemo treatment I had a seizure, and was sent for a scan straight away - all clear thank goodness. The chemo hadn't actually started, they were still prepping me. It was originally thought there were mets that may have been missed, or that I had epilepsy - but they decided it was just extreme stress - I haven't had another one since, mind you I now take a valium in the morning before I go to chemo lol
Trish
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Trish: How scary! I get my first herceptin on Thursday. I'll make sure I take an ativan!!!
Lago: Can you tell us more about the gray area? I have my first appt w/RO on 2/28. I was hoping to get into a study for partial breast radiation for early stage disease, but do not qualify b/c of focal lymphovascular invasion. Thanks!
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Teal my rad onc thought that with all the aggressive treatment I was already getting ( BMX, 6 TCH, followed by 11 H and 5 years Anastrozole) that she didn't want to add further stress. I'm not sure exaclty why she gave me a pass but the reason why I thought I was going to need it was my tumor is over 5cm, near the chest wall with only .75mm clear margins.
Maybe because I didn't have it in my nodes, no LVI and only 1 tumor she might have thought the tumor was really contained to that spot. Just guessing. I was so happy to hear no rads (I was expecting the opposite) that I didn't ask for details.
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Carberry, I thought that unless the tumor was close to the chest wall that a BMX or UMX meant not rads. Someone please add your experiences as my daughter's onc and BS say no rads with mastectomy.
P.S. She had one HER2+ tumor and one HER2-, removed, having THC, then BMX.
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Mother of patient If there is lymph node involvedment they will do rads with BMX or if the tumor is large. That's why I was shocked it wasn't recommended for me. If you search you will see many places listing 5cm or larger tumor can get rads even with MX. Check the NCCN Guidelines:
http://nccn.com/patient-guidelines.html
or
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp0 -
motherofpatient I had thought originally no rads with mastectomy. I had lumpectomy but surgeon and m o both told me yes on the rads either way because of positive nodes.
Lago Ok I feel better about my slim margins. After the re excision the caudal margin was still 2.5. However the surgeon felt it was enough. I'm betting you also didn't have rads because your nodes were behaving.
All, I don't know.. call me crazy..I may sing a different tune after I start, but I feel like the rads cannot in any way top the TCH treatment SE's. I trust my onco and if he feels they need to throw this at the unpleasantness, I'm game.
libraylil
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motherofpatient, my tumor is large, approx 3cm and close to the chest wall with irregular borders, but I also have a second one that is like a marble with smooth encapsulation. I am also lymph positive. All I know is the surgeon and oncol have agreed that I should do the rads and yes everyones situation is different, we just have to trust the docs. I take one step at a time and ask questions along the way. maybe after they do the surgery, they will see things differently.
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I had mx and rads. My tumor was 2cm, but lots of positive nodes meant the full gamut of radiation for me.
I never had brain scans. I did get MRI, pet and ct scans. But no brain!0 -
Libra,
I'm hoping Radiation isn't as draining as chemo, but I've met women in my clinic who say it was no big deal, and some who say it wiped them out.
I dreaded TCH #4 and it turned out to be ok. The only difference is I didn't drink Green Tea, and maybe it's all in my head but I think my symptoms were shorter lived.
Probably mental.
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Glad to hear it TonLee!0
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TonLee, for me radiation by the end was draining, but definitely not as fatiguing as chemo. For me part of it was the 45 minute commute there and back each day during what during my chemo days would normally be nap time. Good luck!
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As a tip: I scheduled radiation the first appointment of the morning. I was in and out..beat traffic, No machines breaking down etc.
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I did this too and thought it worked very well.
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I have finished 9 of 12 DD taxol/herceptin last week. Saw my onc Tuesday due to numbness in feet, she said to skip a week, if numbness continues, we will stop tx's. I wonder if 9 out of 12 is sufficient...Will this always haunt me...I will remain on herceptin for a year, but she does not want to swithch to taxotere, she says this is just as bad, sometimes worse for neuropathy. If I continue, I risk worsening numbness. I know this tx is prophalactic for microinvasion.
I have also had 3 lumpectomies without success in getting a neg margin, there is no IDC, but DCIS remains. I have to decide on mastectomy or radiation. Just don't know, have no family hx other than an 87yo aunt recently had a mastectomy, thats it. They say rad + lumpectomy=mastectomy...studies show just as good a success rate, but knowing the dcis is in there, not knowing how much, worries me. Was hoping for the newer tx where they implant seed, and you have radiation to that area, heard its much easier on the body, but because I don't know the extent of the dcis, can't really opt for that, wouldn't think. Cannot believe it has come to all this, started out with a 6mm area in my breast on mri, 1.2cm area in surgery.
Am really leaning toward rad, but hate what that can due to lung and sometimes even heart....thoughts, comments appreciated...
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her2intn - I had numbness from taxotere starting with the first treatment. I did taxotere/carboplatin/herceptin. After each treatment it would resolve a bit but with the next one it would get worse so overall the numbness was increasing. At my 4th treatment (out of 6 that I was supposed to have) they reduced my dose of taxotere a bit and that helped but didn't stop the numbness. I did the 5th round and with a great deal of agonizing decided to stop there. After chemo my numbness was at a certain level for about 9 weeks and then it got worse. It has stayed worse but is ever so slowly getting better now at 12 weeks. I feel that with time it will get better. I have seen a neurologist but he didn't really have much to say except that if I have pain I can take neurotin. That doesn't affect the neuropathy just decreases the pain. I don't know about the DCIS or the margins but I am also just finishing rads, I have one more boost on Monday, and at least for me it has gone pretty well. I use a lot of lubrication (lotions) on the skin and it has held up so far (fingers crossed). Also, with my rad onc, who is very good, there is really minimal exposure of the lung and ribs. She worked very hard to make a good plan for me. I think now they can minimize exposure of non-breast tissue. Feel free to PM me if I can help.0
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Just had my first herceptin yesterday. Didn't realize it was a double dose and would infuse over 90 minutes instead of 30. Oh well, got more reading in. I am so happy that treatment has started!
her2intn: I've been on both taxol and taxotere (paired w/carbo both times) and experienced about the same amount of neuropathy for both. However, it was once every 3 weeks, not weekly. And luckily, neuropathy resolved on its own after treatment was completed. Taxotere tends to be harder on the bone marrow, which I think is why they usually go to taxol first.
I'm a little scared of the rads part of this ride, too. I've had so much chemo, it's like no big deal to me anymore. I'm very lucky that I tolerate things well, just bring on the pre-meds and I can manage to get through whatever. I was bummed out last week when I found out I did not qualify for the partial breast radiation study I had my eye on. 2 weeks of pinpoint sounded much more do-able than 5-7 weeks of WBR. I mentioned it to my MO yesterday and she said that they have a machine for rads where we lie on our tummy and the boob hangs down, so there is much less risk to the chest wall. I want that machine!
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teal - I wanted to do that type of rads as well - I think it's called prone position - but my onc doesn't offer it yet. Glad you can do it at your office.0
