TRIPLE POSITIVE GROUP
Comments
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Cherry
Sent you a private msg.
Vicky
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tld2017, I am not a specialist, not at all, I am just a patient like you and am turning the internet for information not because I want but because I have to. I know that Herceptin was first tried with chemo and therefore is given in combination of some but chemo is also effective in killing rapidly dividing cells which is a given with Her2 pos, so chemo is a value-add as well. But your KI67 of 2-3%, what will chemo be killing here when only 2-3% of cells are dividing? If it wouldn’t for Her2 pos there would be no way you would have been given any chemo. Are you sure you are going to have Perjeta in 12 months? I thought it was given in 3 months only, please anyone correct me if I am wrong.
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coachvicky, you only posted Cherry...
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Thank you, Cherry, for responding! Your question is a good one. The oncologist said that HER2+ must be treated with chemo. He did say that if I was not HER2+, I would not be getting chemo. Mayo Clinic checked the HER2+ diagnosis twice. I have his written notes at home with me and it definitely says Ki67 is 2 to 3%. He has also written down that Herceptin and Perjeta would be given for 12 months. Because he felt my case was unusual (HER2+ is not usually stage 1, grade 1), he was going to talk with the other oncologists in his office to confirm that they thought the 12-week route would be best for me, rather than the 18-week chemo. So I don't know... My breast surgeon also told me at my last visit with her that chemo would be absolutely necessary because of the HER2+. Eeek, this gives me anxiety!
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Hi Cherry- I can't speak to the Ki67 data, outside my knowledge base. But yesterday my oncologist said that a new study suggested that Her2+++ people should get, in addition to Herceptin for a year, Perjeta for a year as well. I am getting both of those with Taxol for 4 doses every 3 weeks post-AC. He did say that it's a new thing and might not make it through the insurance clearance.
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Dear tld2017,
Sorry to hear you are facing these troubles, but trust me when I say, you are in a really good place in this group. There's a lot of knowledge here and even more love and support.
Your situation is really quite unique, but based on the ton of stuff I have read, you still would benefit from chemo. Taxane types (Taxol, Taxotere) work really well with Herceptin. Please don't panic, chemo is doable. I worked during the whole thing, sometimes with the help of a mild pain killer (Voltaren dolo - not sure if it is available where you are, but it helped with the SEs of my Taxol treatment), but did not cancel any assignments. So I'm sure you can do it!
Cherry, the last Herceptin will be here sooner than you think!
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Hi ladies,
Just checking in and saying hi. Congratulations to Shelabela and Kae on the last Herceptin! I will be getting it for a year too. I didnt realize one has to get herceptin in an infusion room setting. Makes sense but I had simply not thought about it. Taking things one day at a time I guess.
I just had my second Taxotere + Herceptin + Perjeta yesterday and I will be getting Neupogen for a few days. Started having tingling in my fingertips a week ago -neuropathy is here! My MO talked me against icing hands and feet during the infusion to prevent neuropathy. He says the icing may prevent the chemo from reaching fingertips but the damage to the nerves that causes neuropathy happens at a higher level -up in the arm. Bottom line, he made sound the icing useless on top of a royal pain. Still, I had cold water with me and I dipped my fingers in cold water during the Taxotere infusion.
I am losing my eyebrows and thinking of getting some type of temporary tattoo, I was reading about microblading today. I am using a pencil these days but my life would be easier if I didnt have to do it -I am very lazy when it comes to applying make up etc. Did everybody lose their eyebrows with chemo? I had thick, coarse eyebrows and I didnt think it was possible for them to fall off completely.
Having a not-so-good day today emotionally. Today I feel convinced this disease will kill me and I wont live a long life, which overwhelms me with sadness for me and my children. This comes after a few weeks of feeling optimistic overall. I guess it's normal. Also starting to realize things won't be the same as before. This was triggered by talking to somebody who doesnt know I have cancer, and I hadn't seen for a few months, and who was treating me as before -which is something I crave, but I am starting to realize it doesnt really make sense anymore. She was suggesting these plans to go to this salsa class and this and that and I was listening to her like she was a carefree being from another galaxy, if you know what I mean.
Love and peace to all.
LaughingGull
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dear LaughingGull,
I know how you feel. I am a bit ahead of you with my treatments, only on Herceptin and Lucrin/Tamoxifen now. There are days when I can switch my mind off and feel like nothing ever happened. (Sort of...) And then there are days, when I cannot stop myself from reading articles, searching statistics, etc... and just be sad and angry. I don't know how old you are, I am only 36. We were trying to have a child when I found the lump... and now i can never have kids. It kills me that I cannot give that to my husband. So trust me, I know how you might feel. BUT: Herceptin works wonders!!! Can't you get it as a subcutaneous shot? That's how they do it here in Europe.
I had my eyebrows tattoed, just 3 days before chemo started. They might not do it now, as I was advised to do it before chemo. But ask a good salon! It meant the world to me, and it really looks realistic, especially since a little hair remained till the end so it was really 3D.
We will learn to be cheerful and carefree again, but it will take time and yes, there will be days when we just can't help but feel down. But I believe that in the very near future, they will come up with something wonderful, just like they came up with Herceptin.
Hugs to you!
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Cherry-sw-sw, Coachvicky, deni1661, kaemd_99,KB870,and SpecialK, thanks for the words of encouragement after my last Herceptin melt down. I really appreciated your posts. Honestly, I did not cry because I was alone for the last one. After 9 months of my posse shuttling me to treatments and hanging out during infusions, the last 3 months on my own were a relief. I felt like I gained some independence back.
Kae_md and shelabela, congratulations on your last Herceptin. We made it. Hurrah!
Deni_1661, I hope your shoulder is feeling better. It's not an easy surgery. I hope you can have physical therapy and wish you a full and speedy recovery.
I have dusted myself off and gotten back on the field. After feeling adrift and generally lousy after my last Herceptin, I called the nutritionist at my treatment center seeking a ketogenic diet. She was not in favor of it but recommended the 10 day detox diet which is mostly plant based and includes many cancer fighting foods. I bought the book and cleaned out the cupboards. I'm attempting to eliminate all grains and dairy and gluten at least for now. I don't feel physically better yet my mental attitude has greatly improved. I am trying to approach it like TCHP treatment, just do it and keep moving forward. So far, so good. Thanks for listening
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Suburbs
Great news on dusting off and moving forward!
I am convinced (without research) that I have minimal joint pain from Arimidex because I am about 95% gluten free. I read the book Wheat Belly and it really opened my eyes to how food triggers health issues.
Have a great weekend everyone!
Vicky
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tlf2017
I have no idea about the different approaches to who takes which drugs. I find it confusing! I think I stayed dazed when I first heard about chemo after diagnosis.
What helped me was to get a second opinion before I started chemo. I heard essentially the same approach my Oncologist wanted but it from someone different. My Primary Care set up the appointment.
Best wishes. There are new chemo groups starting monthly on BCO. You may find some insight there.
Reread TonLee's wise words at the beginning of this forum.
Vicky
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Hi ladies, just catching up. I got slammed with a brutal cold flu going around. Tonight I'm going out with a boatload of girls to celebrate my upcoming 49th and I will just have to drug myself up
.Thank you for the notes about my crazy hair. I wanted to give you a chuckle. There is no way to currently control or style it, and some days I just feel so tired of wearing a headband. It's been awhile since I felt attractive, to be honest! So it's either longer I have to go, or super short.
Kae and Shela, I love your photos; congrats on finishing the slow race. It's unbelievable to think of how much we've gone through.
Deni, I hope you are experiencing improvements every day xoxo.
Hapb, I can see why you are so torn. You don't want to jeopardize your heart. I hope meeting with your MO provides clarity. It's a bugger that we try to follow the path of the lesser of two evils.
cherry, you are inspiring!! I can't believe how much exercise you are getting. That is so good and I'm very impressed. You've worked hard and that progress is so clear.
laughinggull, you are not alone. This is a mental disease as much as it is physical. There is a “before" and an “after" with this, and some days I mourn my “before" so deeply. It is that loss of innocence for sure. One thing I also find is that it seems sometimes that there is a ton of bad news around me with others' losses. I find myself wanting to escape all that. Like my skin has gotten so thin. Bless all of you who still are there for all others in need. I am just trying to parent and get myself busy with things I like. On that note, a question...
Here’s my question to all of you who have finished treatment: have you made any changes in your life that have brought you happiness and peace? A major change? A new hobby? A new sport? A new attitude? I would love to hear what has changed for you...
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PoseyGirl,
Yes, I started singing lessons. I used to sing and I have always loved doing it, but years ago my life went a different way and singing remained an unfulfilled desire. So my husband found me a singing coach as a Christmas present.
I love it!!!0 -
I had my 2nd TCHP on January 31st. I still have diarrhea . My MO thinks the chemo triggered some hidden irritable bowel issue. Anyone else still have diarrhea for two weeks after chemo?
Laughing Gull I feel the same way . Some days I am so emotional I cry at saying goodbye on the phone. I worry that every ache and pain is cancer that has spread. I have a 15 year old son ,I always thought I would get to see him graduate high school, college and get married and of course see grandchildren.
Poseygirl Excellent question! I would love to know what people have done to make their life more positive and enjoyable. I think it is impossible to go through this and not change. Life is definitely more precious.
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HapB...glad you're back on the treatment train and confident in your team. Onward!
Re: Perjeta - I assumed I would be getting a full year along with the Herceptin. I'll have to check that when I go in on Thursday. I did see the bill for the first infusion of Herceptin/Perjeta and yowza is that a whopper!
There is a new biosimilar targeted drug being developed that should be less expensive than Herceptin.
https://community.breastcancer.org/forum/80/topics/862196?page=1#idx_1
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Hi there, all ye brave ladies. Ive been lurking around here for months already and I think It's time now to say thank you and introduce myself:
I'm Gudrun from Germany, 60y old, had a lobular Luminal B at 55, was told then no worries for my daughters. And only 2 years later my DD Jule got hit by breast cancer. See her profile below. Fortunately, she went on living her life, after her bf having left her. She is a teacher, she loves her pupils, her friends ... . Of course, she has her moody moments, but on the whole, she is confident, which I AM NOT!
I've fallen in a deep depression, crying at any moment of the day, traumatized and stuck in fear. Only with my husband's support do I manage to daily go to work. I'm glad our 3 children don't live nearby, but only because they won't see me being down all the time.
There is one thing that is always haunting me: my DD not having had a pcr after chemo. It feels like waiting for the day x to come. Im exhausted altough I've been on antideppressants. Trapped.
Sorry for moaning and lamenting.
Love Gudrun
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Hi there, all ye brave ladies. Ive been lurking around here for months already and I think It's time now to say thank you and introduce myself:
I'm Gudrun from Germany, 60y old, had a lobular Luminal B at 55, was told then no worries for my daughters. And only 2 years later my DD Jule got hit by breast cancer. See her profile below. Fortunately, she went on living her life, after her bf having left her. She is a teacher, she loves her pupils, her friends ... . Of course, she has her moody moments, but on the whole, she is confident, which I AM NOT!
I've fallen in a deep depression, crying at any moment of the day, traumatized and stuck in fear. Only with my husband's support do I manage to daily go to work. I'm glad our 3 children don't live nearby, but only because they won't see me being down all the time.
There is one thing that is always haunting me: my DD not having had a pcr after chemo. It feels like waiting for the day x to come. Im exhausted altou
gh I've been on antideppressants. Trapped.
Sorry for moaning and lamenting.
Love Gudrun
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Hap ... best wishes for a successful journey. You got this.
Laughing Gull ... the emotional roller coaster gets better. It just takes time. You are probably still raw. You wrote: Also starting to realize things won't be the same as before. A friend told me that after her son's cancer that she realized that a cold would never be just a cold. There is no going back and I find that fortunate. I believe when conquering cancer, a person's entire outlook on what really matters changes for the better.
Here is an example: I always had "Mr Nose" (nitrous oxide) before dental treatment including a cleaning. (Don't anybody laugh ... I was always scared to go to the dentist.) So I show up for my 6 month cleaning after a couple of chemo treatments and the Dental Hygienist says, "I got your Mr Nose, Vicky." I waved her off. She said, "Are you sure? I can leave it here if you change your mind." I said I have had my boobs amputated, expanders filled, and chemo pumped thru my body. I am pretty sure I can handle a cleaning without Mr. Nose. Good news is I save $45.00 a visit because my insurance did not cover the gas!
PoseyGirl ... your wrote: Here's my question to all of you who have finished treatment: have you made any changes in your life that have brought you happiness and peace? A major change? A new hobby? A new sport? A new attitude? I would love to hear what has changed for you...
I came to realize the other day that I will continue treatment with Arimidex and the every six month Prolia injections for the next fours years, one month, and 21 days. I guess I thought since the last Herceptin was over, treatment was over. How did I miss this? Doesn't matter. Life seems so much easier and better now.
Life has changed greatly for me and for my husband. I believe that my cancer saved our lives. We were fat and working ourselves to death. We spent over 200 days on the road doing organization development / consulting and leadership training.
What do I do now? I live.
Sure I still work but it is work that we really want. DH rescinded an offer on a contract this week. Why? The client made written promises and did not complete them. We did not want to work that way. Before BC, we would have sucked it up and stuck it out.
I no longer feel guilty for taking (what I thought was time away from work) to walk and exercise. I make time for walking and exercising.
I no longer feel guilty for not having a spotless home. I am living in my home and not a museum.
I no longer look at my toenails and wonder when I can get a pedicure.
Frankly, I never really enjoyed getting pedicure. I always questioned
the sanitation. I loo at my unpolished but neatly filed toes now and I am so grateful to have nails! I am grateful for many things that I once overlooked while being so busy and not fully living.We eat off the good china and silver. What was I saving it for?
I dance more. I sing more. I laugh harder. I think cancer gave me permission to be who I always wanted to be but hid behind a professional facade.
I hope that answered your question. Thank you for asking.
Warmly, Vicky
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Homemadesalsa, tld, I am in Europe and here Perjeta is only given in neoadjuvant setting and for the tumors that are over 2 cm. I was trying to convince my MO and the highest member of the tumor board to approve it for me and they said that no way I in my situation should be given a drug that has so many SEs as Perjeta. Taking it for twelve months can be exhausting
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Photogirl, I am so sorry about you not be able to have children, this is very sad indeed. As much as my heart aches when I am reading about young mothers getting strike with bc while having small children, women who will not be able to have any due to bc treatment is just another awful side effect of this disease. Are you sure there is no way at all? You are still young. Your singing sounds as a wonderful hobby.
LaughingGull, hang in there, this all is very unfair but it is what it is and you cannot undo things, we all cannot undo our bc, so the question is how do we want to live the remaining years of our lives? No matter if they are many or just a few. I am getting sad every day and then trying to do something just to force my mind to think about something else, it is a process.
Posey, as coachvicky I have started to eat from our best china, I bought an expensive coffe service and just ordered a KitchenAid I always wanted to have. They are quite expensive here btw. I bought myself some things that I prior this dx thought were too expensive. I am back to study my French, I dropped it after the dx but now I bought Veronica Roth Divergent in French and I intend to read it. I started to knit, I am good at it but have not been doing it very often, now I am knitting scarfs and hats because I want there will be things that would remind about me no matter how life would turn out. And I cooking different recipies.
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Cherry, thank you for feeling for me. Unfortunately there's no other way. I am 36, will be 41 when first 5 years of Tamoxifen is over. Then waiting for at least a year to get it out of my system. I could start trying again at the age of 42... with the risk that my hormones get messed up and start this thing in me again. Plus (although it has not been officially confirmed yet) all my doctors think I have BRCA mutation. And I don't want to watch my child go through this...
Gudrun, I think I know how you feel. My mum has ovarian cancer, been fighting for 10 years now. Telling her my dx was incredibly hard. I could see in her eyes everything you talked about. But: you need to be strong! Your daughter needs you now more than ever. And the only thing that matters is that you are still here, and you can still fulfill the mum role: your daughter still has her mum to turn to!!! When my mom asked once on a bad day "why do I have to live to see my daughter going through bc? Why do I deserve such punishment?" I told her: "because I needed my mum to help me through this. Because I deserved the gift that I still have you while i'm battling this".
So please find joy in the fact that you are now here, no matter what comes, you stand by your daughter. Hugs to you.
HapB, sending you strength. And love. You will get through this and will be back with the kids soon
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Good question, Posey. Part of me thinks I will never be done "with treatment" as I pop my daily AI but I do know I have simplified my life, especially of negative people. I gave up several activities that I no longer enjoyed although felt obligated to continue. No more! I also think I am better at reaching out to others as so many were there for me. I have renewed some friendships and worked hard at establishing new ones, including my "chemo class." I take time to really enjoy my little dog. He keeps me walking. I'm not as serious about diet as many are but added a "stretch and flex" class to my year-round golfing.
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I had neoadjuvent TCHP chemo and the Perjeta gave me severe diarrhea. I truly couldn’t leave the house and I lost 30 lbs. my onco insisted that I finish tne 5 rounds but said it only raised the survival rate by 1 % by continuing it with the Hercepton later. I saw 2 other drs who also said tne same thing, so no more Perjeta for me. I took so many drugs to try and stop tne diarrhea, so much lomotil tnat it affected my swallowing, then some drug that’s meant for schitzoprenia but works to stop this, tnat made me suddenly one day start slurring everything, tnat had tne onco nurse yelling at my onco dr for prescribing it, to a $6,000 shot- this actually worked but it was after my last round. All of my onco s have said tnat Perjeta is only for neoadjuvent chemo too.
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Photogirl, I see, I also think that 42 is too late to start. I believe my three late pregnancies that all went wrong actually gave me this bc, I was 43 at the time of the last one. On the other hand adoption is always an option but this is very individual. As far as the BRCA pos is concerned I just wanted to tell you what the doctor from my clinic hereditary department told me when they informed me they will be picking up my case, Her2 pos tumors are rarely caused by BRCA mutation.
Gudrun, your dauther sounds as a fighter, I know it is very hard but do not let her down. My mom stayed with us for five months when I was waiting for results and going through chemo. It was very hard on her but it would had been really impossible without having her around.
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Good morning ladies,
Thank you for the support everybody -I have read all your responses and they are all much appreciated.
@Photogirl81: very sorry this disease will prevent you from having children; I know I would have been very upset in your situation, right when you were planning for a pregnancy; I am 48 and my kids are pre teenagers; from where I am now, my perspective is that you will have your life, and you don't need to experience pregnancy and childbirth to be a mother.
To answer the question on new things I am trying now that I have cancer, I am definitely being more present and patient with my children.
Gudrun: I haven't had surgery yet but I am worried to death about not getting a pcr after treatment, so I understand the worry. The support from my mom is priceless though. Be very kind to yourself, because you need to take care of yourself first before you can take care of her...this is like the masks thing onboard planes.
Enjoy your Sunday everybody.
LaughingGull
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hap - I am going to give you an educated guess on that question. Herceptin works to control the amount of Her2 overexpression in breast tumors. There is a normal amount of Her2 in other parts of the body - such as the heart, which is one of the reasons some patients experience reduced cardiac function when receiving Herceptin. I posit, based on some reading about erbb2 (Her2) and mucin genes, that there is also a connection between mucous and Her2 - and the viscosity of mucous is changed when Herceptin is introduced, which in turn causes a runny nose. Complicating this is that Herceptin can also cause edema and swelling of sensitive mucous membranes. This in turn can cause the stuffy, and simultaneously runny, nose. This is an almost universal side effect, and is further complicated by the absence of nose hairs and irritation of soft tissue from chemo drugs.
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Ok girls... I had my 4th round of TCHP on Jan. 31st. I think I’m experiencing new side effects. Just this week,I’m getting tingling in my chest, arms, back, and arm pits. I also have a heavy sort of achy, tight feeling in my chest that comes and goes. Anyone else experience this? Normal side effect or could this be heart related? It’s very uncomfortable.
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I have an echo scheduled for Thursday for the herceptin. I don’t feel anything abnormal from my heart or pulse. I plan to call my doc in the morning.
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npreece - this could also be neuropathy - you need to let your oncologist know about it.
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Cherry, thanks for your words! And thank you for sharing that info, it gives me hope that I might not have a BRCA problem. I will soon have that tested. My first oncologist with whom I was from the beginning (also my mum's doc) has kept promising to have me tested, etc... 8 months went by, and nothing. And he was fired in January, now I have a new oncologist, she started to arrange for genetic testing.
LaughingGull, thanks for your kind words. There are so many things to process, and it is still so fresh and painful, that we kinda put that part aside for now. We will see what could work for us. However, I think this won't be my decision to make. Whatever my DH decides, I will go along. And I am sort of fine with thinking about it like this. Adoption, surrogacy (although not legal in my country so we would need to go abroad for that) or no kids... we will figure it out.
Hugs to you all and have an amazing week! I will be doing my singing homework all week: learning Anastasia's Paid my dues song! I'll be singing it all week, anyone is welcome to join!
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