TRIPLE POSITIVE GROUP
Comments
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Brenn,
I have a little lymph edema ..it's like I can feel it but can't see it..sometimes tight if I over do it..but otherwise not much..0 -
Nora...count me in as one who had taxol with herceptin once a week for twelve weeks and then went to a loaded dose every three weeks over 90 minutes for infusion. That was the only chemo I had.
Gratitude...I met an acquaintance through the her2 support site. I was looking for info to get started on a vitamin regimen, etc. we have stayed in touch. Her pathology was very similar to mine. She lives in Italy and had chemo called navelbine with herceptin, I think. At any rate, she refused tamoxifen and chose a vegetarian diet with vitamins.
She recently just learned it is back again. Or there is the possibility that they could have missed it the fist time about three years ago, but she has been scanned pretty often for things. I almost didn't take it because I was worried about the uterine cancer and blood clot se's. I am glad I decided to take it, even more so, since her news. My main se is terrible hot flashes. Really terrible. I sort of get this feeling before they start and then I start to internally combust with massive sweating. It comes close to giving me an anxiety attack as I need to get off all layers of close ASAP, and find a fan and a cold drink. I go nowhere without the latter two things now.0 -
Also, I might add that I have tried asking tamoxifen at several different times during the day and didn't notice a difference. Mine are worse during the day no matter what.
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Since the topic of frequency of Herceptin is being discussed I thought I'd post the link to an article I just read in the Daily Mail about a British celebrity who says she was on DAILY doses of Herceptin...
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Fluffqueeno,
That is exactlly how I feel when it comes to hot flashes..I to get a weird feeling first and then comes the heat..I hate it..0 -
Bren58 I didn't have node involvement but I know that Tonlee purposely refused ALND surgery because of the new research pointing that way AND because risk of LE is higher with surgery than with RADS. Granted she still did get LE but hey I got LE with just 10 nodes and no RADs.
PM Tonlee so she can confirm what I posted.
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Ok, I'm going off your subject..... I keep thinking, how in the world am i going to work and when will I be fully able? I cut hair so I keep my arms up A LOT! My Dr. told me 3 to 4 weeks for lumpectomy, more for a double mastectomy, but I'm afraid with all the side effects from meds and treatments, I wont be able to do hair for awhile. Does anyone know or are any of you in field of work ???
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bren - you already have risk for lymphedema, and should take precautions regarding cuts, scrapes, bug bites, etc., because you have had SNB(s). There is no way to predict who will get lymphedema having ALND, and who will get it from rads - all of it is a crapshoot. I think the stats point to ALND being associated with lymphedema more frequently than rads, but avoiding one and having the other (whichever it is) is not remotely a guarantee. There are plenty of ladies on this site who developed lymphedema from either source.
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Barber chic....I am a realtor and I work part time at Macys. I did keep doing some real estate work off and on. I took a leave from Macys for a year. I would not have been able to lift bedding, etc in the home department and I ended up with an infection in my reconstruction which set me back about 6 months. I was not allowed to lift anything heavier than a come can for six weeks. No raising above my shoulders for about that same time.
A lumpectomy would likely be much less recovery time. Different chemos have different side effects and people respond differently so it is hard to say how you might be affected.0 -
barberchic - your screen name suddenly made sense, lol! You might start a thread specifically asking other hairdressers/barbers about their experience. I know there was one for flight attendants not too long ago.
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That's what I thought....keeping my arms up will be a problem, also snipping a finger is always a hazard in my job too! Cutting an ear off probably wouldn't be good for business either.....lol! I'm thinking I may have to apply for temporary disability
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I thought about that too, specialk! I'll work on it in the morning!
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Ha! Couldn't wait, went ahead and put it out there!
lago- I truly have NO patience! LoL!0 -
SpecialK - my SNB was 12+ years ago and no one over the years has ever mentioned the lymphedema risk or trying to prevent it. I have had blood pressures, needle sticks and even given blood from that arm. Not to mention at least 3 cuts to the hand on that side that required stiches. After I had the one positive node taken out in September (that's how they discovered the recurrence), still no one has mentioned the lymphedema risk. It seems like many in the medical profession don't want to acknowledge it. I never would have known about the risk if it wasn't for the ladies on these boards!
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Bren: It is amazing how no one in the medical field talks about the LE risk. I too learned about it here or would have never known. Although, when I went for my colonoscopy and told the nurses not bp or iv on that arm, they knew....and knew I had bc. Thanks to this blog!
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bren - I think the reluctance to acknowledge lymphedema, and the difficulty in treating and managing it, are very much downplayed by breast surgeons particularly. IMHO they take a lymphedema diagnosis personally, as if their surgical technique has been called into question. It is a poorly understood condition, and you can go for years with no issues and then suddenly it appears. You have been fortunate not to have any problems so far, especially in light of all that has happened or been done to that arm! Chemo did me in - body-wide sudden swelling less than 6 months after having the nodes removed. If I had it to do over though I would not change anything. In hindsight I know that for me mild lymphedema is preferable to leaving a 6mm node in my axilla and hoping chemo and/or rads would be enough to eliminate it. It is the same reasoning that led me to have a BMX when I could have had a lumpectomy. Turned out I had ALH and ADH in the non-cancer breast, so I have no regrets about that either.
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SpecialK, ALH? ADH?
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Barber chic, in case she doesn't see it, you could pm estoppe. She was diagnosed in 2008 I think. She has Lymphedema, she started the grrrrr....I hate LE thread. I know she is also a hairdresser. I am sure she would answer any questions you wanted.
I have LE too. I think I have. Little more than a mild case. I have to wear my glove and sleeve every day or my arm and hand swells and aches. I did have an ALND. But even so I don't regret getting the ALND. My BS said the ALND was necessary, and I trust her opinion. I think like a lot of things, a lot has to do with genetics. Some people can get all the txs, take no precautions and not get LE. Others can get just a SLN removed, take all the right precautions and still get LE. I am virtually certain I would still have gotten it from rads whether I had he lanad or not. That's not to say there aren't people who will not get it if they take the right precautions, but otherwise will get it, just some things are out of our control.0 -
I get cuts all the time on my LE hand and don't even know it. I have yet to get cellulitus or infection. Granted if I do catch a cut when it happens I do wash and put antibacterial. I too have been told the risk to my SNB (4 nodes) arm (not LE arm) is minimal but given that I got LE in the other arm I'm cautious. I've had about 9 BP in 2.5 years (6 during chemo) but will only let them do it with a manual. I have yet to have a blood draw but I got my port out in November so I may have to do it. No one will do blood draws from the foot except the chemo triage. I will wear a sleeve on my non LE arm when I fly and do stregth training. I have felt some heaviness at times so my gut says I could be a stage 0 or was but reversed it.
But it's true they tell you very little about LE especially years ago.
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I've been told blood pressure and blood draws can only be taken from my right arm (left side was the cancer side). I'm not certain if I'll end up having an ALND during my exchange surgery or not. I've discussed it separately (and briefly) with my PS and BS.
I had a call from someone the other day regarding a sleeve. I'm assuming the physical therapist at the Disney Center started the process following my first PT session. She showed me two exercises to do at home and did some lymphatic massage (she specializes in lymphatic massage along with the therapy that goes along with it). They have a machine that measures the size of your arm. I have no idea how it works but it's hooked up to a laptop and the net result is that my right arm (non-cancer side) is 6% larger than my left arm. I'm right-handed.
My BS apparently does a slightly different type of ALND surgery that involves mapping. It's somewhat similar to how they do sentinal node surgery. My MO arranged an appointment with the RO at the Disney Center but I cancelled it because it was a few days post chemo TX #1. My inclination at this point is to go with the ALND over the radiation but at one point my MO acted like surgery wasn't necessary (and I assumed radiation as well). My second opinion breast surgeon emailed around with a few node experts (?) and the opinion was split. The doctor from Sloan Kettering said "why would she need an ALND?" and the doctor who specializes in and developed the same procedure my BS uses said "why would she choose not to have an ALND?"
I think I'll meet with the RO at some point and discuss the axilla only radiation. I think this might have been what TonLee had done?
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I had a BMX with SNB with one node removed on each side. Since I had two infections and two TE removals on my left side, I am very reluctant to let them do anything on that side. My BP is now always done on my right calf. All my nurses can do it, although a couple have had to call in my regular nurse the first time to show them how to do a manual. However, the DYna map machine works fine.
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cypher - Atypical lobular hyperplasia and atypical ductal hyperplasia - atypical cells in the lobules and ducts - pre-cursor to LCIS and DCIS, which is of course, the pre-cursor to ILC and IDC - but not always. I had a sneaking suspicion that if one breast could make cancer the other one could as well. I had always had very lumpy breasts, had numerous aspirations over the 20 years prior to dx and sometimes several mammo and ultrasounds a year, and I knew I would drive my self crazy with a hundred self-exams a day so I did the BMX.
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Thanks Kay G....I found her!
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Wow ladies, thanks for all your valuable input! I am so glad that many of you BC veterans have stuck around and are willing to share your knowledge and experiences. The more I read the more I think that LE is like the poor step child of BC that few in the medical professions want to acknowledge. I know I need to ask a lot more questions of the BS and RO doctors before I decide what to do.
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Bren,
I had rads to the axilla...a LOT of it..lol.
My RO showed me data on LE risk with rads to axilla. The lifetime risk is 5-10% with rads, while axilla dissection LE risk in some research is 50% and higher 10 years out.
Lago was wrong about one thing though. I don't have LE. I often say, it will be my luck to get it ... lol, but as of now I do NOT have it. (Knock on wood here.) And I've injured my arm and hand numerous times.
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LeeA,
I'm confused because the literature and standard practice now is to radiate the axilla if even one SN is positive. Also axilla dissection isn't recommended anymore in the absence of gross disease. You had a single positive node, and two negative. Why would you have axilla dissection and then get rads on top of it? What exactly are they radiating if they rip them out?
Before these new guidelines, oh way back in 2010, lol, many women with one positive node had no rads....AND NO AXILLA DISSECTION if 2 were clear.
I don't understand this tendency to rip out the axilla when you are getting rads. You should meet with an RO before you make this decision. You're trying to make a decision without talking to the EXPERT. Oncs and surgeons are great, but you they don't do Rads! My RO and Onc actually disagreed on my rad tx. But I went with the pro (RO).
You will kick yourself in the future if you choose axilla dissection and get LE....you'll always wonder if you explored all your options.
Personally, I believe any more node dissection is overkill and the potential SE far outweigh any benefit. How many clear nodes do they need? You had 2 out of 3!
I had full breast rads, axilla, and super clav rads, as well as bolus (extra rads to skin). I had a skin sparing MX with close margins on the skin side.
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Thanks TonLee, that information is very helpful. I have appointments with 2 BS's at different Philadelphia hosptials. I need to make the RO appts, just not sure where to start, but I will ask the BS's for their RO recommendations. The local hospital can do the rads, I am just not sure how experienced they are. So much to learn and so many decisions to make!
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For those of you who are done, I have a random question....is the tatooing painful? I have sensation on the circle (top part of the lollypop) so I can't imagine getting tatooed there! Do they use an actual tatoo needle/gun? Are you sedated while this is going on??
Now that I am done with chemo I'm starting to think about the next steps.... All info on this process appreciated. Thanks!
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My PS gave me some numbing shots (lydercaine) so I didn't feel anything… maybe some pressure. I think he uses the same stuff tattoo artists use. I saw a tattoo catalog on the counter… too funny.
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I have had my nipples tattoed twice (2001 & 2010). The second time I remember they used some numbing cream to lessen the discomfort. They do use a tatoo needle. In my experience the color does fade and needs to be touched up every few years. By the time I had my implants exchanged in 2009 the tatooes from 2001 were almost non existant.
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