TRIPLE POSITIVE GROUP
Comments
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Bucky: My onc also said the rash is from the taxotere....nasty stuff. She suggested benedryl also but it only REALLY dried my skin out. Once the rash starts, it stays until just before my next treatment and then the pattern starts again. Guess I'll just survive it until after chemo.
Amazing how labs can make mistakes.
You must be one of us night owl chemo ladies. Sleep isn't our friend!
Arlene
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Arlene. My mo said the same thing about her 2. The nodes and the her2 got me a seat in the chemo chair. Libraylil
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Karebear I'm so glad you don't have to do TCH since you've already done chemo-I'm not familiar with navelbine but I hope it will be kind to you! The important thing is that you will be starting Herceptin to deal with the HER2+
Arlene and Bucky I wish my MO would go for 4 TCH but she has been set on the standard 6. Thank goodness I'm almost done now because it's really rough. I believe 4 may become the new standard in the future anyway so I think you will both be fine. Herceptin is the key...
Lisa I'm totally with you on the weight gain. I'm up 14 pounds now and the MO thinks it's all fluid-yukkk! It's incredibly uncomfortable especially now that it's so hot. We have 80 degrees plus on Long Island...When I get home from work each day my lower legs are incredibly swollen i.e. ankles have disappeared:( I spend every evening elevating my legs. By the next morning the swelling has gone down and I start the whole cycle again. Carrying this extra weight is not helping my fatigue either...Bring on TCH#6 so I can begin to recover already!!!
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Bucky...did you try claritin the day before and a few days after your neulasta shot? It helps tremendously with the bone pain. neulasta provokes a histamine response inside the bone marrow...hence the pain. Claritin is an antihistamine.. I also had an angel of a chemo nurse ask me if I wanted to warm the shot. She took the shot straight from the fridge, and stuck it in my bra for about 15 minutes. It was WAY easier and didn't hurt so bad like it did when the serum was cold.
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Dragonfly, you are almost there. Hang in there!! I used to call it tree trunk legs...cause that's what it felt like I was lugging around. It goes away very quickly after you are done.
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karebear so glad you have a plan and that Herceptin is part of that.
On the discussion of 4 or 6 treatments , when Iasked my onc he said that they just didint do enough studies on the 4 txs as with 6. So maybe 4 is enough...I think they need to keep studying this stuff...why make us suffer any more than we have to?
Bucky I am with you on the hair, I have always had stick straight hair, I want the chemo curl! My hair is coming in , about 1/2" now, but no signs of any curl, maybe when it gets a little longer.Will send a message to the hair gods!
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ArleneA --- Exactly that is what the Benadryl cream is doing drying it out only!!! I try not to think of the itching. I know it will get better and there will be an end to all of these side effects, that is what I keep focused on!! I am a night owl!! Never used to be before all of this, and the funny thing is I can take an Ambien and still wake up 4 hours later. Your right sleep def is not my friend!
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geewhiz--- I did try the Claritan, but I don't think I started early enough or stayed on it long enough, I was all hyped up on the steroids so I didnt know if I was coming or going. I do have Percocet lined up for me next time!! I am also taking Claritan now for my skin rash, so I am going to continue on it and see if it helps this go around.
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dragonfly1--- I agree. The second oncologist I saw at Sloan recommended 6 treatments and Adriamyocin, Carbo, and Herceptin. We went back and forth about the cardiac risks, because not only is the Herceptin hard on your heart, add the Adriamyocin to it and it is even more taxing!! She finally agreed and said that was most important for us triple positives, was the Herceptin and the hormone pills for five years after. Let's hope she is right!!!
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I took Claritin every day for the duration of my AC when I was getting Neulasta. I had NO bone pain. A little soreness in my torso muscles, but totally manageable. I highly recommend the daily Claritin while getting Neulasta. Every day til after the last shot.
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KAREBEAR - so glad that you're getting gentle chemo. Just think of it as extra insurance!
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I'm not having any SEs from the Neulasta but wondering if the Claritin will help with the runny nose and pouring water eyes?
Arlene
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Arlene I'm pretty sure the runny nose is from Herceptin. Mine gets a little runny but I've hear some women on heceptin really complaining about this. The tearing eyes… the name for that is taxotears. It all eventually goes away after treatment. My eyes still tear a bit if there is wind but nothing like before.0
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Thanks Lago. I've had 3 treatments and only 1 Herceptin so it must be from one of the chemo drugs or a long lasting effect from my first Herceptin back in February. I start the Herceptin again with the next TX.
Along with the drippy nose/eyes comes the sinus headaches (something I never get). Oh joy!
Arlene
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Arlene some people get headaches on Herceptin too but if you didn't get them before I would be surprised if you are getting them now. I do hear this is a tough year for allergies.0
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Hey Arlene I get the headache from Herceptin too. I take 500 MG Tylenol right before infusion and keeps it from getting really bad. The pain is not a real headache pain but more like a burning in my skull.
On another note, I need to rant a bit. I really hate what BC has done to me and my life. It has 97 days since I was last pain free and felt like me. I miss me and I have not seen her in so long and now I don't even think I would recognize her if I saw her. I wake up everyday and ask myself what the heck did I do to deserve this type of suffering? I am day 6 from TX 4 and it only is getting worse. The leg heaviness has set in along with massive fatigue along with lingering unbearable Nuelasta pain that even the Tramadol is not working on. Don't even get me started on the never ending pain from the port. I am exhausted both physically and mentally that I do not even have the gumption to even try to put myself back together after the C bomb. I am becoming resentful of my friends and family now because I cannot see past the next day or two. Summer is here and vacations are planned and swimsuits are being worn and I am here half of person and looking like a total monster. The weight gain, expanders, hair falling out and list the list goes on. I feel bad all the time and have not had a decent laugh or smile in months.I come here to say all the ugly things because my DH has been more than a saint and I don't need him worrying about me any further and here is the one place i know all of us have felt this or something similar. The scariest part to me will be the rebuild job I have to do emotionally and physically on myself once I am done with chemo. I am so changed by the last few months that I don't even know where to start. How do you get out of living in 24/7 survival mode to living in the here & now? I still have no idea how I can even get through TX # 5, I honestly want to quit right and now because death seems less painful at this point.My onc is allegedly the best in the state and I think they were basing that on billing not patient care, he is sufficient in scheduling my chemo and dosage but not much else. I have been one of his more vocal patients but I swear I get the same auto programmed answer that work on his 65+ patients that doing what their docs tell them too. I sweat this a real conversation I had with him 4 times same answer...
ME "so how did they come up with the number 6 for TX?"
DOC- "Its was just the way it was tested and I don't presume to be smarter the the researchers to question the protocol"
ME - Do people really buy that?
DOC- I do not know what you mean?
ME - You made it through med school your a smart guy. Every time I ask the question you give me the canned Switzerland non researched response. But I will leave it again for now.
Seriously could somebody explain to me how in the study the progression on this disease and TCH and how 6 became the magic number? What changed at 4-5-6 and why not 7? I have spoken with 6 onc and none could answer the ? Is there another type doc I should be asking?
I sound like a crazy peson today and I am sorry, but I need to unload here and maybe some of you can help me get to # 5.
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nnmoss - I asked the same questions. ((((hugs)))) - It sucks. I remember when I smiled after chemo for the first time, my face actually felt weird.0
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Thanks Omaz! I don't feel so unreasonable now. It is a simple question. I think oncology is for people who are submissive personalties but can't accept it.
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nmoss before they tested on people they did test this chemo or animals (probably rats). Not that everything that works on a rat is good for people. It really isn't an arbitrary number they pick. Sure some day we may not need 6 rounds or chemo at all. (Been doing some reading. My onc doesn't seem to like chemo and if there were an alternative that works she's go for it.) This is an old article but I found it interesting: http://www.breastcancerupdate.com/bcu2002/6/melody_sup.htm
I hate that you feel so horrible. I know, it seems it will never end. As positive as I've been through all this I did have my dark days (started after TX 4 and the LE diagnosis then especially after TX 5 & 6 with the nails issues, stiffness, weight gain). But it really does get better. You really will be feeling like you again. The weight does come off. This cancer sucks about a year, little longer for us HER2+ and those who did rads with implant reconstruction. I am feeling almost like myself again. (Granted the exchange surgery next month will set me back a few weeks). I know once the herceptin stops I will feel even better… I am convinced my thunder thighs and calves are from that.
I can't say #5 or #6 will be better but 4 really did suck. The cool thing about 5 is the "1 more left." I felt I was so close how could I quit now. It think what's so hard for you is the weekly Herceptin. That would have driven me crazy on top of the chemo.
You can do this. It sucks I know but it's not forever. It really does get better. I was so shocked when I started to feel like myself again. Granted I got that shingles shit but that's gone now too.
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I went from weekly taxol/herceptin to every third week after I was done with chemo. It was a 45 minute drip. I was in and out with everything in an hour and a half. After chemo was done and I was on herceptin alone, I saw my oncologist every three months for the first year. Since I apparently have mets before the 2nd year began, I don't know what would have happened or how often I would have seen him. I assumed it would go to every six months but don't really know.
My breast surgeon released me at my one year follow-up.
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sorry, posted in wrong place!!!
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Hi Ladies Thanks for the link & the words.I hope it gets better, I feel horrible about your episode with shingles. Oddly TX 3 was worse than 4 but mentally 4 was way much worse.
COOL BREEZE YOU POSTED IN THE RIGHT PLACE, BECAUSE MAN DID I NEED TO READ YOUR POST TO PUT IN PERSPECTIVE. PS I WAS BORN & RAISED IN SAC YOU POST & DX HIT REAL CLOSE TO HOME FOR ME.
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Dear nmoss1000,
Please, you should know that we all on these boards, have the similar meditations, sufferings, continual despairs, looking back to happy times... We all could understand how you are feeling...Lago has written so truthful words, because we have only one possibility: to go through this healing. Our Oncos are researchers, studying over and over about this disease, having seen a huge crowd of suffering patients...
At our IO I get a booklet: Only a roundabout way of your lifetime...
Sorry, I have not enough English knowledge to give voice to my feelings, but I'm with you!
Best, best wishes
Usha
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Oh NMoss: I feel so bad for you. I'm right behind you but I try so hard to keep positive. There are so many days when you do ask yourself why? I read today that women with a high BMI are at high risk and I'm not at all overweight and I've actually lost weight during chemo....not much but a few pounds but looks like the last few treatments are when things start to change. I do have the heavy legs and arms feeling and the mess on my face and thinning hair (but it is still there). You 'only' have 2 treatments remaining....you CAN do this. We can all do this!
I think the worse thing for me is feeling odd pains and wondering if it has spread somewhere else but I'm pretty sure that is the chemo attacking parts of the body.
I too HATE my port and it is coming out right after chemo and I'll use a vein for the Herceptin. The nurses looked at my veins when I was there last time and said that would be fine. I have good veins. I'm two behind on the Herceptin since they withheld it during #2 and #3.
Rant and vent away as it is good for you.
Arlene
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Nmoss I don't even know what to say. Hang in there sounds so empty but you have come such a long way already. TCH 3 and 4 were the absolute worst for me mentally (they've all been horrible physically) because there was such a long way to go. I have to agree with Lago-I'm at the end of #5 and it's given me the mental boost I need to get through to the end now. I still feel rough with 14 extra pounds of mostly fluid, sore muscles, fatigue and now I'm facing my usual 10 days of miserable side effects with TCH#6 but it will finally be over. I think when you reach #5 it's a real turning point in the scheme of things. This has been an unbelievably difficult experience with so many dark times. I can relate to so many of your comments. I feel like I've been in day to day survival mode for so long now that I've forgotten what it was like to not focus constantly on multiple SEs at all times. I feel like I walk around in a tired fog all the time with some sort of ache or pain. I am so grateful for those who have finished ahead of us and can assure us that life will return to some level of normalcy and that we won't always feel like this.
You mentioned the summer and how difficult it is...I agree. I sure won't be looking forward to swimsuits while bald with a port and extra chemo weight:) However, one thing that's been helping me from the beginning of this journey was to plan a vacation that I knew my DH and I could take to celebrate after chemo (and radiation in my case). Having that goal in mind has gotten me through some rough days. We're not going on vacation until Sept but I sit on my sofa and look through my guide book and it reminds me of my "normal" life. Is there something special you can plan to look forward to for after your treatment?
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Hi Ladies, it is so funny how the word Dark keeps popping up. I am beginning to think the minute you get diagnosed they should give you a BS, Onc and Shrink! DFly, I travel extensively for work and I am going to London in Sept and after the DH and I are planning to add in Spain & Morocco or Greece to the trip. My brother in law lives in St Thomas so we get to the Caribbean every Thanksgiving or Christmas. I was thinking having something to look forward to would ease the mental cloud but it really has not, it has more worried. What if I am away and of the nasty SE rears it ugly head and I am in a Riad on Morocco or working in London or having tapas in Spain? At least with my Brother in Law, he is a doctor and I can get care at his hospital if needed. Arlene hit the nail on the head every little pain & twitch could mean something else, there is no rest from it. I think what I want is the impossible NORMALCY. I am sure when we are all done with this special type of hell and put some distance between us and the SE I am sure it will eventually set in but I was never the patient type. My only real light at the end of the tunnel is when I think about May 2012. No herceptin, no a**hole onc, no port, new Foobs and no more docs!
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Dark is apt. It fits.
Nmoss...it sounds like you're grieving and hit the anger part....I am right there with you on why 6 and not 4? I asked my Onc the exact same thing and he said it was tested with 6 so they know "that works" ... meaning if I want to look at the statistics then I have to accept the treatment they are based upon, otherwise I'm on my own.
I didn't like to hear it.
And I do believe eventually they'll show 4 is just as effective as 6. I didn't get any neuropathy until 5 & 6...and now it comes and goes....pisses me off when I could have stopped at 4...maybe.
Maybe it's because I'm in rads and have to do this every stinking day M-F...but every ache and pain is mets in my head. I took my son to see a movie today and my right side was really hurting..I spent the whole movie pressing into my right side trying to isolate the spot..so I could come home and figure out what it was....I didn't enjoy the movie, and felt stressed because it still hurts and I have no idea what it is....
Living with the axe hanging over my head is going to be the hardest part for me.
I swear once I'm free and clear I want to limit my exposure to other BC survivors, at least right now anyway. Last week one of the women I'm in rads with (Her2+...had a 5cm IDC, had MX, and clear nodes, but they're doing rads because it was so big, "insurance") Anyway, she worked through all her TXs and right through rads....just found out (4 weeks into rads) that it's in her liver and brain. Now she has to quit working, NOW! AT THE END!!
It makes me so mad. So freaking angry I can hardly stand it.
All that to say, I don't know if the dark times lessen over time....I guess each woman has to find her place of acceptance....
I'm not there yet.
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I think your right Tonlee I am in mourning and I am going through those damn stages. I keep forgetting this one important fact. My gut is telling me to stop at 4, I ams serously concerned about Neuropathy, weakened immune system and all the other long term SE. I am terrified to go what your going through after 5 & 6. I agree with you that one day 4 TX will be enough and we all endured extra pain for nothing! I am so pissed for your friend and their is a piece of me that that fears going through all 6 to end up where she is. The idea that even after going through this hell that there is no way to test if we still have any cells left is an outrageous notion to me. I agree with you, once you get through the TX and Rads stage, move away for some clarity and find yourself again. That is all I want now, time and space between me and it to get an anchor on my emotional state again.
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TonLee - I am so sorry to hear about the woman at rads. Geez, I can't imagine how devastating that would be. This disease SOOO SUCKS!!!!!0
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I hear you- and feel the axe hanging over our heads as a great analogy for certain. There is no truly 'going back' after what we have gone through. I am realizing that now- this coming week is TCH6 for me, dragonfly & specialk all. I too felt after getting 4 done it got easier. The SE for 5 hit early- but I am feeling better (except for a cold/sinus infection I got which has worn me down).
I don't feel 4 treatments are enough- for me personally. I am an RN, now in admin role but worked in oncology a long time years back- and was before this nightmare in school for my PhD. One of the items I did early in my dx was read the research. I feel TCH is good- but the HER2 is nothing to take lightly. Yes we have treatment- but I want all that I need as much as I despise each and every treatment, procedure, diagnostic test, and md visit and all that goes w/ it. I am scared and the fear is something I try to keep from ruining every day- some days it works, some days I think about this horrible disease we had so much it takes my breath away.
I agree- I don't feel I can plan a vacation- I am bloated, bald, and just not physically fit. And I will have (I hope) exchange surgery in July. I feel this has been the year of cancer- being diagnosed early January- it's consumed my life and my family's life too. And the HER2 part of this takes my breath away thinking of it if I let myself- so I don't often.
I know you all understand- we are all experiencing so many of the same feelings. THis whole process and treatment stinks. I am glad we have the treatment- but I still have days where I am like- how did this happen? I miss my old boring life. I know it's gone. I am trying to adjust. Some days are better than others...
Omaz you say it well......
Lisa
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