TRIPLE POSITIVE GROUP
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Sula..."flax pushing flacks"...I love it! You wouldn't happen to have been an English major?
Steph, I highly recommend against having all of your lymph nodes removed. I had 25 removed (all from levels 1 and 2) on my left arm & am at lifelong risk for lymphedema, which can be debilitating. I can't tell you how frustrating it is to have to protect my arm constantly from heat, bugs, scratches...and it's only been 5 weeks! My understanding is that the sentinel nodes are the first ones to show cancer, so with your surgeon doing a SNB, those nodes will be checked during surgery for any involvement. If nothing is there, that's a good sign that you're in the clear. It does sound very frustrating--I'm sorry!
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On the flipside...I had all level one and level 2 nodes out almost 6 years ago...and have no issues. I do hot yoga (in a 105 degree room), and play lots of tennis using that arm and still have no problems. I have also done a lot of flying. I had an initial scare, lots of cording after MX, so I was high risk for it, but it seems all is well,
I do believe that right after studies came out saying there is no need to take out all those nodes...the endup is the same without. I did have rads, and do really feel that sort of mops up anything leftover after chemo.
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I had no nodes involved but back then if your tumor was over 5cm they didn't do SNB they took at least level 1 nodes out to find out if there was any involvement. I had 10 nodes removed from the left and developed Lymphedema. I was told my risk was low.
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Re: bone pain after Neulasta - Mine kicked in about 24-36 hours after the injection, and for me, it was quite bad the first cycle. By the last cycle, there was hardly any discomfort at all. I did Claritin and tylenol, and I had Norco as well. The pain was quite bad, for me, but it got better. It was almost as if my bone marrow adjusted to it as the cycles went on.
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I guess I'm getting Neupogen instead. 3 shots. One this afternoon one on Monday and one on Tuesday. Is there a difference in side effects with this vs Neulasta
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Hi, I'm joining your +++ group. I was diagnosed at the end of last month. Stage 2 (2.6 cm), Grade 2. I met with the oncologist today and have appointments on Monday with the surgeon who will put my port in as well as for a MUGA (?) test for my heart prior to the Herceptin. I am a school teacher and go back to school for a 1/2 day Monday, then full-time on Tuesday. I know I'll have to take a little time off (perhaps 1/2 day?) for the port. Chemo would start the following week. It sounds like the day before chemo I'd get the H & P and the day of chemo they do the T & C. Therefore the TCHP regimen that so many of you have done or are doing. My intention is to try to stay working through all of this, however I do realize I need to listen to my body, too. Four cycles, then an MRI, and maybe two more cycles after that depending on the results of the MRI and how I'm tolerating the chemo. I'll be on the Herceptin for a year. I intend to have my BMX done over winter break and then reconstruction (DIEP) next summer.
I have enjoyed reading posts on here and feel I've been well-informed. My oncologist was impressed with my level of research. I mentioned the neupogen as an alternative to the neulasta just for convenience and she seemed open to it. While I've read every post on this thread, I don't remember seeing the neupogen mentioned much. Does anyone have experience with that? I am trying to avoid having to go into the office two days in a row. Thanks!
Ginger
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Jen,
Journalism....but my husband and I are screenwriters so we play with words all day long. I just hate people telling me what to eat or not eat etc...re: bc. I was a freaking non drinking vegetarian the first time and the second time a non drinking vegan. I've always taken care of myself , I'm in good shape, wear a size 4 and STILL got this disease!!!! Somebody telling me to eat more cottage cheese???!!!!
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Lago,
I'd love to meet the medicine that plugs me up!!! Y problem through this whole thing has been just the opposite.. The Big D. Now that I'm not on Taxol I'm pretty much back to normal but every one of my MOs nurses etc seem to be obsessed with constipation... And one even said that diarrhea is not an SE...he was more full of shit than me and that's going some
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Ginger, welcome to the group that no-one wants to be recruited to. It does sound like you have thing in order but it has probably been a crazy overwhelming 2 1/2 weeks.
If you are having port and muga the same day, I wouldn't plan on working 1/2 day before just for scheduling sake. Keeping busy is good, but no sense in rushing around. Treat yourself kindly and gently. You will be sore post port and they use sedation so you will need someone to drive.
Neulasta is available as an auto-injector that releases med 27hrs post application. Neupogen is a daily injection (think of it as short acting) and given 2-7 days depending on response. You do have to be observed 30 min post initial injection to watch for reaction. This is the protocol at the spa I use. Do you have somebody to give the shot or are you going to administer it yourself? Also check with insurance to see how covered. Your nurse manager may be able to help.
I had #5 of 6 TCH every 3 weeks and doing H only the weeks between. You will figure out which days you may need to recoup. Mine are 5-7 , everyone is different. (Day 0 is chemo/spa day)
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Gingersnappy, I had my port placed last Monday. It was relatively easy, but my procedure was delayed 2 hours so it took longer than I expected at the hospital. I was able to stop off to meet with friends at a coffee shop on my way home (I felt good enough to do that) but needed a ride home because of anesthesia effects. When I got home, I did take a nap. If you can take more time off, I would recommend it. The site is still a tad sore but no need for any pain meds ever. Ready for the chemo/neoadjuvant therapy on Monday... Good luck and welcome.
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Gingersnappy, my wife was given a 5-day dose of Neupogen, a week after her first infusion when she started having fever and later confirmed to have neutropenia. It worked great and her fever was gone within a day or so, and she didn't have any major SE from it. So now the MO decides to be proactive and gives her Neupogen 24h following infusion. We have not heard of Neulasta until we found this website - not sure why the MO didn't suggest that in the first place. It's supposed to be more convenient than Neupogenbecause it only requires a single dose per cycle if I'm not mistaken.
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I had received Neulasta after each of my tx for AC. I had experienced severe bone pain each time by the 3rd or 4th day. Not fun. Unfortunately I had receive side effect from all tx received including some weird pigmentation to my arms that look like lg. birthmarks
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geewhiz, I'm relieved to hear that you had so many nodes removed & have been active without yet developing lymphedema! I know it can be a huge problem...Iago, that sucks about developing LE & I'm sorry you're dealing with that. I'm a diver, and I can't help but wonder if I'll ever dive again. OTOH, there's the fact that underwater I'm in a compression (neoprene) suit and I have the added pressure of the water--great!. OTOtherH, there's the wrestling with equipment and trying to tug on the wetsuit, which is very taxing and abusive to the arm--not great. For the moment I'm trying not to think about never diving...and I might have to have a suit tailor-made & start donning and doffing my gear in the water to eliminate some of the lifting.
MMay, I just finished seven consecutive evenings of Neupogen shots. I need seven more weeks' worth (alternating weeks). I understand the side effects to be similar to Neulasta but less severe because the dosing is more gradual. My MO said I could consider moving to Neulasta when I move to the next phase of chemo--once I'm not on a dose-dense regimen--but he recommends sticking with Neupogen since (a) I've shown that I react well to Neupogen, and (b) he believes the bone pain will be more pronounced with Neulasta. Do you have someone to administer the shots for you? By the way, try to avoid muscle and really go for a fatty area. My husband and I were focusing on the tops of my thighs, but the meaty undersides are the places to head.
Hi Ginger! You can see I addressed my Neupogen experience. The shot itself has burned a few times, but honestly I think that's because it was being administered intramuscularly (by mistake). I have had next to no bone pain so far, though there has been a vague achiness from time to time.
Suladog, I thought I might have recognized a fellow English major, but journalists/screenwriters fall right in line.
Everyone in my family loves playing with words. My 21-year-old son once spent an afternoon creating a Bananagrams puzzle entirely in Latin. I think that about says it all. I aim to eat better than I was prior to BC--not tough, since I pretty much ate whatever I wanted, including lots of junk food--and I still believe "everything in moderation." I refuse to give up my delicious nightly ice cream, and if that's what kills me, well...I'll blame it on Breyers. (Let my estate know after the fact, m'kay?) P.S. Step away from the cottage cheese.0 -
Welcome Gingersnappy. You have a wonderful thread with lots of good information and support! I get Neulasta the day after chemo and have found if I do Claritin and Aleve I am good. I forgot to take Aleve yesterday and I am aching this morning.
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Welcome newbies!
Gingersnappy -- I worked through chemo, too, but I reduced some of my work commitments so I could get some rest in. I didn't have any problems with fitting Neulasta into my work schedule, but my clinic was 10 minutes from the office.
JenPam -- I had 20 nodes removed and haven't developed lymphedema (yet). I go swimming with my son almost every day; it makes me feel more limber.
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Thanks, everyone! I was under the impression the neupogen would be something I could do at home. I'd much prefer that even if it's over a period of many days. I have a 45 minute commute and of course doctor's offices aren't open hours that are particularly conducive to my schedule. I don't want to make my treatment worse, but I also do want to keep things as normal as possible, too. I am diabetic and give myself two shots a day (plus will be on a sliding scale fast-acting insulin when I start chemo), so giving myself a shot is not a problem. Am I mistaken? If so, please let me know - gently!
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suldog my MO's NP told me at chemo training I would get the big D. I told her probably the big C. We know our bodies and how they behave. We've lived with them for so long.
JenPam my LE is very minor. I wear my sleeve. I'm careful about what I lift/carry but not too bad. The trick is to wear the sleeve and exercise. You may need to talk to a specialist about your diving. Don't say no yet.
minivan check with your oncologist. I know I had several reconstruction surgeries when on Herceptin. S/he may want you to take an antibiotic before you get the root canal to avoid infection.
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Hi Ginger, and welcome . . . you've found a great resource. I'm a teacher, too; we can compare notes re: TCHP and teaching full-time.
There are so many wordsmiths, here! (I was an English major, myself. . . )
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So, I had a PET scan on Thursday. It was to check on a spot that lit up on two previous PET scans. (It's my femoral neck, a bone in the hip area.) MO thought that the hip was a really odd place for a single met to surface, but she wants to be thorough. Today, I found my PET scan results on the hospital portal. It reads "Left proximal femur lesion is stable and remains concerning for metastatic disease." Otherwise, everything is clear. I will see MO in a few weeks; she will probably order a biopsy. If it's a met, it's survived five months of chemo and six months of hormonal therapy. If it's not a met, what could it be? By the way, my left hip doesn't hurt and I'm not hypercalcemic (according to recent blood tests).
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ElaineTherese I'm sure your MO will explain this to you. Does seem strange. I know they saw 4 areas in my liver before chemo. Scanned again after chemo then 1 and 2 years later. One went away and the others remained stable so convinced they were cysts. Last scan almost 2 years ago.
"concerning" doesn't mean "IS"
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I am also having a pet scan the 26 this month because I had a focal spot in my liver slightly light up pre chemo but the corresponding ct scan showed no lesion so my drs are convinced it's nothing but obviously we want to be sure..pet scans are scary the fact they aren't 100percent reliable..would a bone scan show anything different that could confirm metastasis
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Hello! I am triple pos. I need support and info. I have been in a way denying all this. Just going through it and then having brief perioss of trying to deal with it and looking away again. I have had my mastectomy, completed my big chemo and doing herceptn. Part of my issue is that I had a stroke 4 years ago so this is just so much to think of and try to remember. Anyway and I'm trying. I had 2 tumors. One was and the other fast. the large was 3.5. I have headaches all the time but they are worse lately. maybe the herceptin. Also bodyaches. I look forward to all the info and have read lots already
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Jen,
I make my own ice cream, and have for years except during chemo when I found it easier to by a bit of Three Twins... They very kindly sent me a bunch of certificates for free ice cream!!
Btw, following the le conversation, I had 18 nodes removed 25 yrs ago and never developed le ...in fact no one even mentioned it to me back then! I was doing all sorts of stuff they probably tell people not to do and nobody ever said anything. This time They only removed one or two nodes and so far so good
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Jen-The clinic where I see my MO and receive my treatments is 85 miles away from where I live. But I work at a medical clinic in the town I live and they would just do my shots there. I ended up not getting the Neupogen on Friday as my wbc was fine. So I decided to hold off. My MO was on vacation so I couldn't ask him if that was ok to wait.
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Jumbled, welcome! Have you mentioned your headaches and bodyaches to MO? Does he/she have any suggestions for alleviating them? Hope you feel better soon!
lago, thanks for sharing your experience and for being the voice of reason. I know that PET scans often pick up on benign conditions, but my MO likes to talk about scary scenarios too much for my taste. I knew that someone in this thread would talk me off the ledge.
Stephmoen, good luck with your PET! I'm not sure what a bone scan would reveal; I will ask MO about that.
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Elainetherese I don't like the way I worded that "confirm mestastasis"I meant prove that it's not mestastasis but I too do not know what a bone scan shows I've never had one..good luck to you as well!!
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No worries, Stephmoen; I knew what you meant. If doing a few more scans would help figure things out, I'd be for doing them. I've read descriptions of bone biopsies and they don't sound like too much fun.
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jumbledbamboo do mention the headaches to your MO (medical oncologist). There is a chance it is from Herceptin. See if they can slow down the infusion to 60 or 90 minutes. It has helped others.
BTW I did similar treatment to you except more nodes removed and BMX. I didn't have node involvement but had a really big tumor (5.5 cm IDC + 1 cm DCIS). August 31st will be 5 years since my surgery (did surgery first). I didn't even get perjeta. There is a good chance you'll be OK. What (ESD) estrogen sucking drug are they putting you on?0 -
Gingersnappy, yes, I took the Neupogen injections home with me. I picked up seven doses at once & put them in a cooler until I could put them in my fridge. Each evening, I took out a dose 30 minutes prior to using, and then my husband did the injections.
I have a lymphedema question: if someone hasn't developed LE yet, should she wear a sleeve as a preventative measure or is that overkill?
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JenPam you should not wear a sleeve if you don't have LE except maybe for flying and/or weight lifting but even that is debatable. Granted I do wear when I fly and lift weights on both my LE and my as risk arm. My LE arm had 10 nodes no radiation. My good arm only had 4 nodes removed. Since I did get LE in one arm I do feel I am at a higher risk for the other. Also I have a family predisposition to LE.
Read this: linky
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