HERCEPTIN and/or PERJETA Threads
Comments
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Thanks everyone. I am thankful that I do have Taxotere to go back to if I need it.
That's a really interesting article, Josalive. It's encouraging that they are making progress on that front. To address your constipation question, I have morphed from slight constipation to more towards the diarrhea side (at least in the first few days after the infusion). I tried to take iron supplements for awhile and that made me very constipated. Just awful! Do stool softeners help and are you making sure you are well hydrated? I suppose making a drastic change in your diet could be the reason, but it seems like your body would adjust eventually.
Babyduck - I hope you will find that Herceptin and Perjeta alone is much easier than with the Taxotere.
Mikarae and Sue - fingers crossed for both of you. Hoping for great results! Sue - your colonoscopy experience sounds awful! I hope you are feeling better by now. Was the prep close to the time you had your H&P infusion?
Enjoy Punta Cana bstein! I don't think an extra week will make much of a difference.
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Such an Inspiring story. I just finished 7 rounds of TChP and my dr wanted me to go 8 but my feet and hands were starting to feel the neuropathy. I'm an acive person and I couldn't bare not waking, hiking or playing tennis after only one round of chemo. I was dx'd de novo in May 2015. I'll also be on armidex. I was hoping it could be more than maintenance but actually kill the Cancer. I have liver and bone mets. The first three rounds of TCHP showed sugnificant diminishment but the last 3 only showed stable. I hope this works!
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Sue--yuck! I had the exact same reaction! But I did not take the 2nd dose of whatever the hell that was. I'm beginning to think I should stop trying to figure things out (about my body, se's) because nothing makes sense.
I can't remember if I told you all I had a clear scan last week. Anyway, I got a copy of the report in the mail. In looking over it...there is NO cancer in my liver! Which blows my mind. I started out with 3. I had 50% reduction at the end of taxol/h/p. And since then for the last, almost 3 yrs, they have continued to shrink and one by one disappear! I am so thankful to have these drugs...
In the same sentence...I am struggling still with major fatigue, shortness of breath. Went to pulmonary doc today and had breathing tests. Everything is fine. Heart good, lungs good, blood good! So she ordered 3 tests--sleep study, stress test, and ? Can't remember. Going to get to the bottom of this. I really think my onc is wrong. I think every single se I have is related to treatment (if not h/p, then tamoxifen, or xgeva). They are all listed at se's? I'm not a dr so I have no idea. So very thankful to be doing so well--just pissed I don't feel as good as I think I should!
Always praying for you all.
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Oh Lordy...I'm just catching up on so much news here!!! Hydranne & Kjones...very, very happy for great scans! Shutter...so much weighing heavily on your heart, I'm sorry. With the loss of our sisters, and others we know and love, it sometimes gives me a sense of such "unsettledness"....which isn't a word, but should be. I lost my 2nd cousin to multiple myeloma...and a couple infusions ago, met a gal who has bc & multiple myeloma.
Shutter...I'm thankful your organs are clear...that's a huge yahoo! Now, hoping & praying that your next scan doesn't show a need for more tax!!!
SUE...my gp has given me a "skip day" for colonoscopy...don't really know why...or maybe now I do! Glad it's over for you & hoping for amazingly good scans for you & Mikarae!
Kj...I have to say that my fatigue was lifted when perjeta was dropped. So many ses have gone away...I know I've said it before, I pray that herceptin is holding its own because I have to pace myself, st 61, because I have really good energy. I did start Prozac at the same time, in large part, due to anxiety over first dropping chemo & then perjeta...weird crutches!!! A somewhat odd thing I'm experiencing now is elevated bp. I was first dx w/high bp right before my mets dx. I've been on the lowest dose of diltiazem since 10/12. Now, it's been up a few weeks...I tweaked nerves in my arms playing tag with the grandkids & when I went to have it checked, bp was higher. Three trips to check it show high. I'm hoping just pain from nerves but, just another ugh. My echo was great, thank heavens.
Thanks to all Veterans in our bc.org family!! I played piano for GS's school's Veteran assembly today. Such a wonderful day! We gave our piano to DD when we downsized 10 yrs ago, so I practiced at her house and at school w/the 6 first grade classes. Forgot how much I love playing & children singing at the top of their lungs. Loving life....and all of you! SUE...thanks for Barb's "We care." I knew instantly! I'm missing Penny's dancing squirrel.
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Hi everyone, checking in and catching up. Josalive my mo told me to use metamucil if needed. Shutter, so glad no organ involvement. Hopefully ur mo is right. Wait and see is hard. Kjones, yay happy for u. Tamoxifen made me feel outta breath. I was only on it for one month. Im not looking forward to going back on it. It just made me feel old...tired, sweaty, achy....Ronniekay sounds like u had a wonderful day..I had scans today. Breast tumor and lymphnode shrunk, bone mets healing, no organ involvement. 3 more rounds of THP so that'll be 9 Taxoterrible by the time I'm done...just in time for Christmas. Sorry for those I missed. Hope everyone has a great day. XO
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Hi everyone
I read everyday but don't post often. Suffering from depression just making it thru everyday. Yes I am on a med for that. After 5 doses of THP, My PET showed decreased SUV intensity in my chest lymph nodes but increased intensity in my abdomen. Now have a larger tumor on pancreas head and entrance to my liver. I am switching to Kadcyla this week. I read only 3% of Breast cancer goes to Pancreas. Not good. I pray for all of you even though I don't write very often, I love reading about all of your lives. Wish we could all meet for lunch. You Ladies are all so Brave And wonderful to share your stories for others to learn from. I thank you sincerely. Hugs to all.
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Oh 2nd, wouldn't it just be so lovely if we could all meet for lunch? I would be so happy to meet each and every one of us, Ronnie could play the piano for us (go ahead Ronnie!) and I know we would dance! A beautiful thought.
Kjones, I am so happy to hear if your good scans. And 2nd, I'm sending good karma your way. I know it's a bit scary, but keep the faith, honey, there are major turn arounds happening all the time, especially on this thread.
Best to all, SUE
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I'm glad you're reaching out, 2nd! We're here to listen & you know we understand...and like SUE said...major turnarounds happen! Remember the saying, "Women are like tea...the hotter the water the stronger we get!" You are strong & brave & we're counting on kadcyla to blast any tumors away for good! YES...we must get together!! I will play & make you all sing Carole King songs...you know, "You've got a friend!"
Tx..So, so happy for good results & the end of taxoterrible in sight!!! I finished my first tx in '09 right before Christmas. A very cherished holiday it will be for you! Hope the last tx are kind.
Josalive...I got a hernia from diep flap & w/some "binding" (a funny word) on navelbine, the hernia specialist said to eat organic prunes so the hernia didn't get worse. I happen to like them so I did eat them & they kept me amazingly regular. When I felt a bit off...I ate 4-5 a day for a few days & it took care of it. Seriously, I was amazed they worked so well. It can be so miserable.
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Just wondering if any of you do massage on treatment. As I said two weeks ago I had THP with lots of SEs. SEs are better but if course the anemia is still there. Just wondering for safety. Thx!!
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Hello babyduck - I had massage treatment before, during and after treatment. I read on the internet how massage may spread the cancer etc. but followed my instinct and went anyway as it always helped to relieve tension, stress and tight muscles. My RMT used a gentler approach when I was in treatment and avoided the areas on my spine that had (they are gone now) cancer. It is lovely to have that hour to rest and let the tension go. To stop thinking and worrying for a bit. I always felt better after a massage treatment. Unfortunately, for me, the relief only lasts a day or two. I also go to acupuncture. I feel acupuncture has helped with the fatigue. Even if it's just in my head, I am convinced it helps.
Thinking of you all. If we got together, the first thing I'd do is hug every one of you. That's fair warning for if/when we see each other.
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Hello evryone!
I had my first dose of THP weeks ago and I might have posted here about it. So far I've had the worst headaches on and off and bone pain. This came a week after treatment. Then came the diarrhea and was just taking immodium for it since I have to work. I complained about constipation but I think I'd rather have that than the runs. Then the hair is shedding a little and I remember my first chemo my hair was already gone around this time! I asked the dr and he said sometimes it could just thin out but will not all go like the first time I had chemo since he is giving me a lower dose. Is that the case for anyone? Sorry but had to ask because I havr to tell my kids if I have to lose my hair again. I have prepared by getting a wig and lots of scarves. I have also shaved it before so I am just waiting to do that this weekend. I dont really care if I lose my hair I'm more concerned for my kids. They know I go to the dr a lot and get treatments but not chemo yet. I just can't bring myself to tell them esp my daughter. I can hide the pain from my kids but not the hair loss... It sucks. I wish I could post more often but between work and kids it's been tough. I am so grateful for each and evryone of you and would love to give you guys a hug too!
Have a great weekend evryone .
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Baby duck, I also have massages esp after Zometa infusions to help with pains. I go to a special therapist. It helps a lot and MO said its ok. He said cancer doesn't spread by that mechanism. So I will keep getting one as soon as I have free time!
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Jahaage – I had a similar experience, a dramatic difference with the first few rounds of THP, but just stability after that. It's tempting to want more, but the doctor and others constantly remind me that stable is good and that we can remain stable for a very long time on these therapies. It is a marathon, not a sprint, so I think stopping when you started noticing neuropathy was a good choice. I admire that you can still play tennis. My doctor won't let me do anything except for swimming, cycling and walking because of the spinal mets (and walking is the only one I manage to actually do).
Congrats on the clear scans Kjones! Yay! I hope they can figure out your issue with breathing and fatigue.
Ronnie – Glad to hear you are still doing well after dropping the "P". Sorry to hear you hurt your arms, but sounds like you were having a good time. I agree with the "unsettledness" which I think is the perfect way to describe it. Last week a dear friend of mine just found out that her Stage IV anal cancer has metastasized again after 5 years of NED. I'm beginning to feel like a jinx as so many of my friends are struggling with serious health issues suddenly. I'm so sorry about your cousin. By the way, I too recognized Sue's revival of Barb's "We care" with a small smile of remembrance. Someone in another forum posted the squirrel the other day and I had to refrain from saying "No…that's Penny's squirrel". The little things we miss so much.
TX – looking forward to that last round of Taxotere for you. I stopped mine at the end of December 2014. It was nice to start the new year off without it!
2nd – I see you deleted your post, but I wanted you to know you are in my thoughts.
Minnie – I buzzed my hair very short about a week after starting Taxotere. It was my first chemo. I lost a ton of hair right after the second treatment, but what was left pretty much stayed and continued to grow, albeit slowly. Be sure to tell your doctor about the headaches. I had the bone pain, mainly in the hips, and still get it when I get my Xgeva shot. I tended towards constipation, with a little diarrhea thrown in for a change now and then.It's hard to know what to expect, each round of Taxotere was different for me with different SEs.
Getting my hair cut back into a pixie today. I have been wrestling with it lately and was debating on whether or not to let it grow into a bob, but finding out that I might go back on the Taxotere in a few months plus hat season coming up has made me think short is better. This is the first time in my life that I've had short hair, and I have to admit I kind of like it.
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Hi Everyone
Still here reading. I am just so beside myself because my Onc office postponed me starting Kadcyla for an entire week because they haven't got insurance approval yet!!!!!! They told me point blank the insurance company decides every treatment. Unless I want to pay $ 20,000 cash for Kadcyla out of pocket. It will be 4 weeks from my last THP before I get the Kadcyla. My mets are very bad... In my abdomen. I need a second opinion. Do any of you have suggestions. MD Anderson? Cancer treatment center of America, Mayo Clinic? I live in the Midwest. Crying all the tim
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Minnie, all my hair fell out day 16 after my second dose of taxotere.
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2nd..to be truthful, I would be crying too. I'm sorry for this delay. As long as you're getting tx, as lousy as you may feel, there's the hope it's killing bad cells. The insurance company does have that power...and it's criminal! So is the fact that it costs $20,000 for a tx. If you're confident your onc is relentless with them (and I'd make him/her prove it!). there may not be anything he can do. My onc showed me her dialogue w/ins when they denied xeloda...so they approved perjeta when it was new, just to shut her up! You need to know that it WILL be approved by next week...what will your onc do if it's still not approved???? (Sorry to be devil's advocate). Some centers will eat the cost, I know mine considered doing this, until approval is granted. Be a pain in the tush! Love & hugs!!!
Oh Shutter...I missed the squirrel...I probably would've cried. You & your sweet smile & sassy short hair (ah to be young & cute!) couldn't be a jinx to anyone! I'm sure you're one who gives hope to those who've gotten that same crappy news we've heard. It just sucks...I don't know if anyone else notices, but I watch tv-a lot-and there are so many chemo/cancer ads nowadays. I just saw one for neulasta. It infuriates me!!! The $ they're paying to advertise, and really, do people go to their dr & say, "I think I need neulasta!" Good Grief (just saw the Peanuts movie). I'm just hoping you get to keep that cute hair!!!
Talking about hair, Minnie...I remember Hortense and a few others saying they kept their hair with cold caps. Don't know about it..I can't even wear swim caps, I have head claustrophobia:-). I don't know how young your children are, but I always feel like there's a way you can find, in your heart, to tell them what you're going through. I was a school secretary & did recess duty with elementary kiddos. The stories I heard would curl my ears & id always try to find the words to soothe & nurture (to many, I was the only one who did). I know this is on your mind every moment, I detest that part of this disease, you will find the right way to talk to your little chicks.
Love & hugs to all...and peace to all the people on earth. I especially think of our sisters in the part of the world seeing such violence. Thoughts & prayers from my little corner of the world.
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TXmom, I'm on day 17 and the hair just starting to fall off my head now... And my scalp hurts
Shutter, i did tell my dr and he said sometimes the headache comes from pain and he knows I'm not good about taking my pain meds. And I do have a big sore in my mouth and it's painful! So I have been diligent about taking my Motrin now. The diarrhea comes and goes and constipation still here which is manageable for me. I get really bad hip/bone pain from Zometa too so I have massages for that. I have not tried acunpunture. I'm thinking about it now. Scheduling the buzz cut soon. Im wishing for a pixie though. I have always had either long hair or a bob.
2nd, I have HMO and everything needs to be approved first. And yes even the type of treatments I get. But they dont take too long and they are a usually approved in a week. Hang in there and im praying you get approval soon!
Pain free weekend to all!
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Minnie, I had headaches too. They went away when I had my hair buzzed off. Yes, I remember, my scalp really hurt. When I talked to my children, I told them, I'm going to grow my hair, lose my hair, grow my hair lose my hair. It just depends what treatment I'm on but the most important thing is that we are together. XO
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My wife had her first Herceptin treatment only after her TCH 6 round treatments. Is it worth asking her MO if he would do perjeta and Herceptin? what are the benefits of both together? She has a full year left (every 3 weeks) of just Herceptin
thanks
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Dear amstar, how lucky your wife is to have an advocate (you) to help her at this time. Does she have stage IV disease? The questions, answers and information on this particular thread are specific to folks with metastatic disease, and I hope your wife is lucky enough to not have to deal with stage IV cancer. If she has lesser stage disease, you will likely get more accurate advice on a BCO.org herceptin thread for women with non-metastatic BC. Wishing both of you well. SUE
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Ronnie, thanks for your kinds words. My kids are 8 and 11. I still can't bring myself to tell them yet. I hate that I'm so brave with facing cancer and yet can't tell my kids!
TXMom, Thanks and I really hope I'll have the courage to tell them soon before the hair goes! 😔
I'm so so grateful I have you all to turn to.
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Friends: met with my beloved oncologist for routine visit today, and I was steeled for the " time to start thinking about the next scans" conversation (due for my 6 month scan-o-thon in December). Guess what? He wants to wait for the 1 year mark in June. YIPPEE - I think ....
He told me that current thinking is that if someone seems clinically fine, no red flags or suspicious complaints, then maybe better to lighten up on the radiation associated with scans. Also that I've "been doing this for a while" (I'll say - 14 years since cancer hit me out of nowhere, and coming up on 5 years with metastatic disease). Also, my lung mets are officially "inactive" per my last scans.
SOOOOO, no scans for me for a while. I should be happy, right? No scanxiety for the holidays. Of course it also means no check mark on my cancer progress report either. Damned if I do and damned if I don't - I swear, this stupid disease makes me CRAZY!
Love to all, SUE
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That is wonderful news Sue! I see my oncologist tomorrow. Maybe I will suggest waiting until June as well if my blood work and markers are good.
I agree it's six or half a dozen. If I wait until June, will I be thinking what if... I wish I was more of a glass half full type of person. Sending you love Sue. 0 -
sue--yay! But I feel you on cancer making us feel crazy!!!
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Thanx everyone. I think I will be happy about no-scans for now, and then forget about it! And hydranne, my tumor markers haven't budged, even once, in all the years that I had them tested. We don't even bother to check them anymore. Onward! SUE
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That's fantastic Sue! I have to wonder if they are trying to save us the extra radiation, now that they expect us to live longer and better with this. We can only hope!
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Oh happy dancing, sister SUE!!! I could tell you you look marvelous :-). You just sit back & enjoy the holidays :-) When my onc took me off chemo last Oct, he said scans in a year. Total joy! Then in July, when he took me off perjeta, panic attack! So, to stop me from jumping off that cliff, I had scans in 10 mos & yep, showed exactly what he expected, stable Mabel! I asked if he should do a brain scan since I haven't had one since dx...he said he's not into trolling thru brains for no reason. It's such a gift to have this confidence in our oncs!!! Hope the good dr treated you to dinner out to celebrate!!!
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Finished my last treatment of the Taxotere on Nov 4th. Now just going forward with herceptin and perjeta. I am so glad to be done with the taxotere piece. I really hope that some of the side effects will get easier once I take that out of the mix. Ready for my heair to start growing back!
I did not have any shrinkage of the 2 tumors in my liver so my MO has sent me to an internal radiologist to do the Y90 procedure. I did the mapping on Monday and will do the actual procedure on Dec 1st. It is a little scary but I think it could really help me since the chemo did not do the trick. I am really thankful to have another option at this point.
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Very best to you, BabyRuth. I read/hear that people have great results with that procedure. Hope to share the good news with you. SUE
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Congrats on good news Sueopp.
Baby Ruth good luck with your procedure.
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