TRIPLE POSITIVE GROUP
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Lago,
I'm sorry about your LE, but that actually made me feel better. My hands are so tight now..like my thighs, it is hard to tell if it is Taxoterrible or LE. Feels like a moderate to severe case of carpel tunnel.
I also notice my TE hurts longer after each treatment..like fluid is building up and pressing on it, which in turns causes it to press on the axilla. YOUCH!
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Carberry,
What is the point of removing more? Will it change your treatment?
My treatment was going to be the same no matter how many pos. lymphs, so I figured I'd leave them alone (surgically) since they were getting chemo and Rads.
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TonLee my upper arm felt "heavy" during exercise when I first thought I was getting LE. Sounds to me like you might have muscle stiffness (that got really bad for me after tx4) and/or fluid build up. Especially since you are feeling it around your TE's. I got that too… actually I still get that feeling in my TE's when I eat something salty.
The fact that you are exercising and doing some weight lifting will is actually good for LE prevention as long as you are building back slowly. I have a feeling you will be fine. Remember I don't have LE in my 4 node arm. I also found that walking around and not sitting all day really helped bring the swelling down in my LE arm. Exercise gets the lymphatic system moving.
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I notice that exercise helps with the LE too. Especially when I walk if I keep my elbows bent at 90 degrees as I walk (I seem to go faster this way too).
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Wildlass,
My port was done under general anesthesia. I had discomfort in my neck area where the tubing (or whatever it's called) was placed from the port and over my collarbone (which stick out a lot!)
Every time I moved my head for the first few days it was very annoying. It got better now and I am so glad I have my port now. It's a Godsend! It still creeps me out because it sticks out so much but I cant imagine my infusions without it!
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Thanks everybody who weighed in on the ports. It looks like my next step is radiation, before I get chemo, so I have 6 weeks or so before I have to deal with how to get the drugs in me.
Any advice on radiation? Does it hurt? Does it make you sick?
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Windlass - no, the rads don't hurt directly... just the skin burn that develops after a few weeks... some ladies fare very well and others not so much. Some women get a little sick... some not at all. Some get tired/exhausted and others barely notice. I know that I got fatigued about the same time I was finishing up my 6 week regimen, but by then I had the time to sleep a little more because I wasn't going to rads everyday! My skin did pretty well, but burned and peeled under my arm only. I used the lotions they gave plus 100% pure aloe (no alcohol) and hydrogel pads that I got from the rad's office.
You're going to be fine!! TonLee - my arm gets cold also if I sleep in the wrong position... I have some impingement in my shoulder and if I get it above my head or at too much of an angle it cuts of the circulation. That extra fluid could definitely be stressing your circulation!
Lago - I'm sorry for your LE too... may it get no worse... have you thought of asking about node transplant... they are typically doing them now only in women who are already showing signs of LE (but I begged and begged and got my way with this one).
Library lil - Yes, I am going through MUSC (and also work here!).
I'm very happy with all my treatment... just don't like my onc very much right now!! LOLGeewhiz - Hopefully if it works... the node transplant will be a viable option if anything happens in the future.... I worry everyday too!!!
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Guys:
I'm getting a baseline ECHO today. Can anybody tell me what to expect?? Thanks for all the info on here-it's is so helpful!!!
Kristal
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kristkat - I layed on a table in a darkened room and they use an ultrasound wand on my side and chest and take recordings and pictures. That's it.0
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Hi Kris,
It's nothing bad. They just do an ultrasound of your heart. So they put that gel on your heart area with the doppler, they also did the center of my chest and my neck area. They will have you hold your breath a lot to get a better view. Super, super easy. Nothing to worry about at all.
When I first realized what was being done it sent back memories of being pregnant and having them use the doppler on my tummy to see the baby. lol
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Leanna9 my LE is between a stage 0 and I. Not bad. They don't do node transplants for the low stages. You really need to have an issue to do that. Also this surgery is still very new. I would be concerned about taking nodes from your groin and then end up having LE in your legs. My mom has had LE in her legs for as long as I can remember. No way would I put myself at risk.
Not everyone who has LE has major issues. What your read on this site can frighten you… I know it did me but now that I have LE I realize my condition isn't that bad at all.
BTW I started the nose bleeds again. Guess it is the herceptin. I thought I might be lucky and have it stop after chemo. But overall I am feeling so much better. Less stiff everyday. Fingers a lot less tender and they are starting to grow out.
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Lago
How far after your surgery did you notice your LE starting up? It's always something I am watching for and thank goodness I haven't seen any signs of it with myself.
I was also wondering something else. What is the natural progression of meds for triple positive? I know I have to go on tamoxifen for 5 years. After that do most go on femara? My mom said that was what she had to do but she was estrogen positive and not triple positive like me.
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I am curious, too, about the post chemo plans for the triple positives....
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LE: I think I noticed some heaviness when I worked out in that arm about 1.5-2 months later but the swelling I didn't become noticeable till after my 4th chemo (3months).
This is the picture I sent my onc at 3 months. You can notice my tendons and veins on one arm are not visible.
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I'm on Anastrozole now for 5 years. I'm not sure if I will be on it longer at this point. I would ask your onc what the plan is… but in 5 years they may find that another 5 years is beneficial. They are doing studies on this now.0 -
I definitely notice the difference. I have to admit though if I didnt know what I was looking for I'd probably think they were both close to the same.
I had a class about LE shortly after surgery. It was a group class. They were showing us signs to look for and pictures. They said the first thing most people notice is that their hands would start looking "younger" because of the swelling and less veins showing.
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Thanks for the pic Lago... I can't really see a difference on your arms until I look at the wrist lines...mine still match up ... so I will keep an eye on that.
My PS saw me today...expander is doing fine...but my Onc is sending me in Monday for a MUGA. He says Herceptin can cause heart failure, (which we know), and he wants to see what's going on with it.
My regime for being triple pos....MX, chemo, Herceptin (for a year) radiation & Tamoxifen, (I am premenopause...or was until chemopause)....I will be on that 5 years then switched to Armidex, or Femara. That's the plan right now...if I have my ovaries out, I will switch to one of the postmenopause pills.
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Ok so I have been wondering, not that I would "love" to have radiation but why do some people who are triple positive and have had mastectomies get it after chemo and others dont? Does it depend mainly on tumor size? The surgeon? What is it? I was told no radiation
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nora - When I was gathering info about mx vs lump+rads my rad onc said that having a mx doesn't automatically get you out of rads if you lymph nodes are positive. She didn't say how many or how involved though. I have also heard of women with mx getting rads if they didn't get clear margins during surgery.0
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I was told that a MX with one lymph node (micromet or isloated tumor cell) involved and I wouldn't have to get radiation. If it was macromets then I would have to get radiation to my axilla. Why? Because once the cancer is in the lymphs, even if they remove the entire axilla, it could have spread outside into the fatty tissue.
Some women have to suffer with axilla dissection AND full radiation (even though their lymphs aren't there anymore)...
It's one of the reasons I refused axilla dissection. IF there was any cancer in my lymphs, then "standard of care" dictated I get radiation. So when I looked at the % of LE in axilla removal (40-70% 10 years out) vs radiation, I saw radiation is like 5-10% 10 years.
I couldn't logically get out of radiation. It makes sense to sterilized the area where the cancer spread...but axilla dissection seemed like overkill...and the LE risk is higher.
~Edited~
Yes, Omaz is correct. I also didn't get clear margins on the skin side of my MX. So I will have radiation to the entire breast and the axilla.
Sucks.
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The guidelines for Rads is very complex these days according to my PS. He said he can't keep up anymore with the recommendation requirements for rads.
Even if you have clear nodes an MX/BMX doesn't guarantee no rads.
Usually tumors 5cm and over get rads but not all the time as in my case. I was in a gray area. My rad onc felt my treatment was already very aggressive and adding rads wasn't worth the additional risk to my body. I have a feeling if I had node involvement, especially more than 1 I would be doing rads.
Other considerations that I know of are close margins, if they could get clear margins, location of tumor (how close to chest wall) etc.
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I had skin-sparing, nipple-sparing BMX with clear margins, 2 cm tumor, micromet (20 cell cluster) in SN, complete node dissection with a 6mm area in one node only (out of 12), chemo, no rads.
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SpecialK - did you have the micromet in the SN and another node that was dissected with the 6mm area? I would be surprised to hear such a low cell count in the SN and another positive node. Is this typical?
I know that I had 10 ITCs in my SN and they called it negative and no further dissection of any nodes.
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Thanks for input on echo! It was literally the easier/fastest procedure I've had so far! In and out in approx 20 mins! Thanks again!
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kriskat - yep, it's the easiest one of everything isn't it? Easier really than a blood draw.0
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Hi everyone. Just had Herceptin yesterday, and didn't realize this - it was my 14th out of 17. Which means I have 3 left. I'll be done on May 9. It feels weird knowing this. I mean, it feels great in most ways, but I told my onc that I do have some of that end-of-treatment anxiety about losing my security blanket of infusions. It's so weird - I hate going, but I'm kind of wishing I was just getting Herceptin forever. My onc reminded me that I won't be doing "nothing" when I finish Herceptin b/c I'll be doing Tamoxifen, etc. On May 9 I will have basically had almost one appointment per week with one doc or another. It will be really strange to go every 3 months - again, mostly in a good way, but I do find comfort in having a doctor look at me constantly. Anyone else go through this?
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Hi Saralmom - not there yet, but just bought a book that talked about the "end of treatment anxiety." One of the recommendations was to go on a trip with your husband/friend/significant other to mark it as a completed milestone. Only on chapter one....
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I do Herceptin until October, but I got the same feeling after daily radiation for a month. Like you I was relieved to not have to drive that 45 minutes to and from treatment, but there is comfort when someone much more trained than us is watching for changes or cause for concern. It is also hard when most people (except those very close) want to celebrate being finished and you don't feel done and still have tired and scared days. Some times I'll go quite a while without thinking about cancer & reoccurence, but it seems like that thought creeps in sometimes at quite innappropriate times (like while being questioned at a baby shower). With that said, it will be nice not to be in that infusion room--it is filled with the memories of chemo and I think that makes it hard for us to move on while on Herceptin.
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I did Herceptin yesterday too...and for some reason this round it made me sick...nausea, bloating, etc.
I hope that doesn't stick around.
I can't wait to be done, and plan on taking some sort of vaca with my husband to celebrate. But, that's right now in the thick of it...we'll see how it REALLY is when I get to the end...
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So I just wanted to share this.
I sent my Onc the CALGB 40101 study that says 4 treatments are as effective as 6, and asked for his thoughts on it.
I don't think he'll let me skip the 6th. I think he'll say that over 90% of the women in the trial had node negative status....and that is just not something he will want to risk since all the nodes I allowed them to take were positive.
I wonder though, in ten years, if 4 cycles will be the gold standard, no axilla dissection, and even better radiation.
I'm thankful for the science that got us this far, but anxious for better treatments.
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saralmom I look at it this way. No need to do herceptin forever then build up a resistance to it… especially if you don't need it. Also the drug hasn't been out there that long. There may be some long term SE from staying on it too long. I'm sure you don't want to be the test parrot for that!
saralmom you haven't started tamox? I was supposed to start Anastrozole 1 month after my last chemo. (Started 6 weeks instead so we could start on the 1st of the month). Why the wait?
So far I can't wait to be done with the injections. What a time suck IMO. I live only about 5-6 miles from my treatment center too. I can't wait till that part is over but maybe I'll feel differently then.
TonLee I would have so loved to of stopped at 4. I have a feeling even with node negative in my case she would have continued with the 6. I think she was purposely being aggressive given the biology and size of the tumor and my age. I have a feeling if I only did 4tx then rads would be recommended. I did check out the study but did it include HER2+ women?
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