TRIPLE POSITIVE GROUP
Comments
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npreece, this could be an allergic reaction as well. Please call your oncologist and describe your symptoms. I hope you feel better soon
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when my heart took a downhill slide from herceptin, I was extremely out of breath all the time
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Blownaway and HapB, I finished my 18th and last Herceptin treatment on January 25, 2018. I had terrible shortness of breath during the first 12 treatments, but I found that the last 4 were a breeze. My shortness of breath had been bad enough that MO ordered a chest x-ray (was already having echocardiograms every three months). No lung issues were detected other than mild atelectasis likely due age and body habitus. I honestly have no noticeable shortness of breath, unless I'm rushing to catch my daily commute to work!!!
My body seemed to adapt to the Herceptin, finally!0 -
HapB, I have just noticed the buzz about arginine amino acid elimination from diet, but from what I was reading yesterday (cannot now locate the article), I understood the beneficial effect depends on an individual's genetics (i.e., doesn't help all BC patients; however, elimination of arginine from diet helps those who are deficient in producing the enzyme that limits the body's arginine overproduction). Here is an article that address it, but not as well as the other article. Confusing for us at this stage as the in vivo studies are still on mice, it seems. The initial article was focusing on triple negative breast cancer. https://www.ncbi.nlm.nih.gov/pubmed/29395657
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Special K,
Finally an explanation! You wrote: 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.
The day after my first infusion, I had a horrid running nose like nothing ever before. I could not sit at my desk without a tissue to stop mucous from pouring out my nose. When I called the Nurse Navigator about this she said it probably was not a side effect and that I had most likely picked up a bug. NOT!
And never knew nose hairs were so important until they were gone.
Thanks for the explanation.
Vicky
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Good Morning Fighters!
Dang ... this is a powerful bunch of women on this thread.
@Photogirl81: As LaughingGull wrote: you don't need to experience pregnancy and childbirth to be a mother. After numerous miscarriages and our son's death, I came to realize raising my own children would not be in my future. I know writing these things does not take your hurt and pain away. I also know that you will find your path and a full life. Hang in there.
@Gudrun: Maybe a change in your Rx or talking with someone would help with the depression. There is a lot on your plate. I would think your feelings are normal as you go through this with your daughter. Glad she got rid of the BF!@Hap: Best wishes for a good day.
Vicky
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SpecialK, this is interesting, I have a runny nose now when I am on Herceptin but I even had it before the bc diagnosis, not that runny but still, especially while eating but even when not, and being absolutely healthy too.
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coach - the nose hairs, right? Who knew we needed them so much! I am so sorry about the loss of your pregnancies and your son, that breaks my heart, but I am inspired by your triumphant spirit.
photo - I was diagnosed and treated in my 50's so I can't pretend to know how you are feeling at this young age. I was adopted as an infant and my family felt like any other. My mom had a full hysterectomy at the age of 24 and my parents waited to adopt my brother and I until they were in their 30's. After my children were born I had a new appreciation for how difficult it must have been for my mom to have the pregnancy and childbirth experience taken from her at such a young age, but not giving birth to us herself had no impact on her ability to be a wonderful parent.
Gudrun - the pCR rate with triple positives is roughly half, but survival rates for early stage patients much higher than that. Also remember that until pretty recently most of us did not have neoadjuvent chemo, including myself, surgery first was that standard of care, so those of us treated adjuvently have no idea whether the meds were effective or not other than we have survived thus far. Linked is some info about pCR:
posey - how I have changed since being diagnosed with breast cancer - in some respects I worry less - I have a more full realization how little impact worry has on the outcome of anything, and how much of a waste of time and energy it is. Can't change yesterday, can't control tomorrow, only have right now - make it the best you can. Learn from the past and let it inform what you do in the future, but really occupy the moment you are in right now. I have always been an analytically minded person, and find this has carried over into a more concerted effort to understand people better - their motivation and reasons for behavior or thought process rather than reacting to things on the surface. I try to be kind, we never know what burdens people are carrying or how a small act of generosity can impact someone. Sometimes this means something as easy as a smile and holding the door for someone, or sharing my coupons in line at the store, but for me personally, truly being there for friends and family has been very fulfilling. I have always been selective about friends, I didn't need a bunch, just a few really good ones - and those relationships have deepened. My parents and only sibling have passed away, have lost my in-laws in the last year, so friends and my husband's sibs/spouses/children are very important to me. I am looking forward to spending even more time with all of those folks. Helping others who have been diagnosed with cancer - through this website, and closer to home, has been my silver lining. Helping several friends through cancer treatment has been challenging as I was still having surgery and some treatment myself, but it was an opportunity to share what I had learned and provide support in a way others in their lives could not because they had not walked in these shoes. All that said, my bullshit meter is more finely tuned, I don't waste my time with things I really don't want to do, or negativity or drama - I have no time for that. Facing one's own mortality allows us to see life through a different prism, and hopefully refines what is important to us and makes us happy - and that can be different for everyone. There is no one right way to proceed.
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thank you so much for all your caring answers. You are such a great community.
Photogirl: I do like your answer to your mother who has had to endure so much, seeing her as the gift you have while battling all this. Thank you for this view.
Cherry: Yes, my daughter is a fighter, and your mom has to be strong as well. In this, I'm not alone.
LaughingGull: You're right, I ought to be nice to myself so that I can be this priceless support your mother is to you. My fingers are crossed for good surgery results.
Coachvicky: " Glad she got rid of her BF". You got it right. He was one of them who only share the bright side of life. I always had that feeling, but didn't want to meddle.
Love to all of you
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coachvicky, I am very sorry about your pregnancies and your son, life is indeed very unfair.
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"and showed no impact of pCR in the luminal A group or among luminal B cancers that are HER2-positive"
Thank you so much, SpezialK. I'll memorize this part until I'll know it inside out. So anxiety relieving.
Love
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Gudrun: indeed you need to take care of yourself. You have many ears here ready to listen to you and support you, vent and rant as much as you need to.
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hello ladies,
CoachVicky and SpecialK, thank you for sharing your stories with me. They were inspiring and comforting. DH and I will find our path once the scare of this bc eases.
Gudrun, you would not believe if I told you how much strength my mum had while I was getting chemo. I mean she was going for treatments (Avastin) every three weeks, and still she managed to cook for me and my husband (even though I told her to rest). On the day of the chemo, she would tell us to come by, and she cooked us so much food that we did not have to cook for a full week. I am sure that my mama's cooking helped greatly in recovering so fast from treatments.
So be that anchor for your daughter and cherish every phone call or meeting. I know it means a lot to just be mummy's little girl a bit...no matter how old we are.
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Hello everyone, I'm playing catch up....
Kae - congrats on your last Herceptin! You are so beautiful, I love your smile
Hapb, wishing you good results and no more complications as you start on Herceptin again. You made a tough decision but I know your faith will see you through.
Coach- I am always amazed at your strength and wisdom. I am truly sorry for your miscarriages and the loss of your son. You inspire us all to push through hardship and perseverance toward a life worth living.
Suburbs, your post has inspired me to get back on track with my eating. Since my surgery I have been eating too many convenience foods to make it easier on my hubby. I know not eating sugar, dairy and gluten will make me feel better and it will probably help with healing too. Thanks for the kick in the butt I needed! I made a batch of mushroom, spinach and wild rice soup to get headed in the right direction 😊
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Posey, happy 49th birthday! Hope you are feeling much better and you had a great celebration with your friends! I appreciate your question about changes since dx...I feel like a completely different person! Mentally I am calmer, more patient, forgiving and positive. My faith and spirituality is stronger, I start each day with gratitude and appreciation for the many blessings I do have. Physically I lost 40 pounds, cut way down on drinking and drastically changed my eating habits. I meditate. I can sit on my porch and just listen to nature without feeling like I should be doing something else. I am retiring from a stressful job in less than 2 months. I want to give back so will be looking for a new “career” where I can make a difference in someone's life. I no longer feel the need to fill every waking minute with activity, but instead I want to be fully present in everything I do.0
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Photogirl, I am so sorry your dx will prevent you from having children. I pray God blesses you and your husband in other ways that bring you joy and fulfillment. Please let us know how we can help, this group has been a tremendous support for me throughout my cancer journey. Sending hugs
tld2017 - welcome to our group, you will find tremendous support and great info here. Yay you did not have node involvement, that is a plus! I did Herceptin and Perjeta for 1 year, no chemo in a clinical trial. I did not have any bad side effects from either and a great response. I had a mastectomy after 6 months of treatment and pathology indicated only a few single cells in the tissue that was removed. I am on AI for a total of 5 years and that has caused the majority of side effects.
Laughinggull and faith323’ I am sorry you are feeling down. Unfortunately this is part of the process and the doom and gloom of HER2 hits us all from time to time, even for those of us done with treatment. My approach is to focus on all the blessings happening today and push aside the what ifs of tomorrow. It is easier said than done for sure but I make a conscious effort to stay positive and I say my mantra every day “I am cancer free”. You will find your new normal and there is much joy ahead for you I promise!
Gudrun, welcome to our group. You and your daughter will find the unconditional support needed to get through this cancer fight. You are blessed to have each other and you as a mother can provide the comfort your daughter needs that only a mother can give. As a mother myself, I can understand how tough it must be to see your daughter go through this. Your daughter has the right attitude and you must follow her lead. Appreciate every moment you have together and lift each other up on the down days. I pray you find the strength, comfort and peace to get through these tough times.
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Gudrun, I want to add that my mom passed 17 years ago and I have missed her more so since getting cancer. There is no one better at caretaking than a mother and while my husband, kids, family and friends all did a great job, I know my mother would have given me so much more. I can't explain it but you have that something special your daughter needs. And don't forget to get your needs met too, take good care of you 😊
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Hi everyone,
Been crazy with work and appointments so I had a lot of catching up to do.
Coach, I am very sorry to hear of the loss of your son. No parent should ever have to bury a child. Big hugs xo.
Photogirl, if I remember correctly, you are only 36. My first breast cancer was when I was 36. It is hard to deal with all the changes that you will experience. Especially, your insides changing before it is meant to, like menopause. But as coach said, you will experience a full life, unfortunately, you have to make some alternate plans. I know this doesn't ease your pain either, but in time, you will conquer.
HapB, I must have missed something, saw you had another Herceptin. Hoping all goes well. Hope your Shortness of breath is not related. I saw your article...omg...is nothing I eat right? Love chicken, asparagus, dairy...ugh!!!!!
Oh, and I get these awful expanders out on 3/15. So sick of them...
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So hard to keep up commenting. I will just leave a general comment
All you ladies are incredible . We each bring something to this page!
Have a wonderful evening.
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Hapb I had a total of 17 Herceptin and Perjet
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KimCee, I can't wait until you get those expanders out...they are horrible. Hang in there
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Thanks Deni...hope you are feeling better. Also, happy almost retirement...yay you!!!
You are right Shelabela...I always realize who I forgot to say something to after I hit submit lol.
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Hi, I'm new.
My mom, son and I are NBN positive. My mom has breast cancer and my son is in remission from Lymphoma. My great Grandma had ovarian cancer, My grandpa had colon cancer, my sister, mom and 2 nieces had melanoma.
Ive noticed that most of you have had radiation. Why? Aren't your doctors telling you that radiation just makes tumors grow? I know doctors know very little about this gene but I can't believe anyone doctor would recommend it.
My urologist, oncologist, breast surgeon and gynocologist all say my only option is surgery. Ive had my uterus removed and I'm in the planning stages of removing my ovaries and a masectomy.
My mom has had a partial masectomy. Chemo and radiation were not recommended.
My son nearly died from only 3 doses (not rounds, doses) of chemo and he was stage 0.
Cancer caused by NBN cant be treated like other genes.
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i have never heard that radiation makes tumors grow, but i guess i don't know what NBN means either. Sorry to hear about all the cancer in your family.
I think i have shingles again. Will this crap ever go away?
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Hi everybody. Deni1661, so happy to hear that my meltdown inspired you. I recall a time when you inspired me to move forward with my surgery and for that I thank you. Your bravery helped me get over my reconstruction fears. Sending healing thoughts for that shoulder.
Shelabela, wah! I had shingles before cancer. The Valtrex worked wonders. Sorry to hear this.
Herceptin and the runny nose. I was warned of this side effect. I am about 3 weeks out from my last Herceptin. The symptom still exists but it is dissipating. I don't leave the house without a box of Kleenex and cough drops though.
For everyone new to the board, welcome. You have come to the right place for support. It's a special community.
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When does the runny nose start? I have been on Herceptin since October. Had the runny nose after the first infusion only. I chalked it up to something else.
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Trina, I am so sorry to hear about all the cancers your family went through. I never heard that radiation makes tumors grow. I believe I red somewhere that radiation can cause bc mutations, when it changes hormonal receptor status for example. I am in Europe, the standard of care here is always to go with radiation after breast-preserving surgery but I know that some TN patients receive radiation even after BMX.
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Good morning, Ladies! Couple of questions that I'm hoping someone will have thoughts on. I had my sentinel node biopsy and lumpectomy on January 19th. My chemo is not going to start until the week of March 19th, two months after the surgery. The reason for this is that we had already scheduled a vacation with my family and I'd really like to go, since it is already paid for and can't get refunded. The doctor said he would prefer chemo to start within six weeks of surgery but the extra two weeks won't make that big of a difference. Now I'm second-guessing myself and thinking I should cancel the trip...
Has anyone else here waited that long between surgery and the start of chemo? Also, my next question is about cold caps. What do you think of them? I understand they are expensive, painful, and only work in about 50% of women, and that, on average, women only save about 50% of their hair if it works. I'm considering this route but would love to hear input from all of you! Thank you so much!0 -
Tld2017, on cold caps, success really depends on which chemo you will be getting. If you have weekly taxol and herceptin, cold capping is extremely effective. I lost essentially none of my hair - maybe 5% at the most. Taxotere is harder on the hair, but most are successful in keeping more than 50% of their hair. Adriamycin is hardest for keeping hair with cold caps. There is a very active cold capping board in the Managing Side Effects forum. Sorry I'm bad at doing links on my iPad. Check out that board and read back a number of pages to get some feel for cold capping.
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kim - if you are not yet experiencing the runny nose you may one of the lucky ones that it doesn't happen to.
hap - 17 Herceptin is the norm, on every three week dosing - although deni also had Perjeta.. I got the first 6 Herceptin infusions with chemo every three weeks, then 11 more Herceptin infusions, one every three weeks, for the remainder of the year - which equals 51 weeks of treatment. This number changes with Herceptin dosing with weekly Taxol - you would receive 12 smaller doses over the three months of chemo, then receive three week dosing for the remainder of the 9 months, which I think works out to another 12 doses, but the same amount of medication since the weekly doses are smaller. I have actually seen a very few continue with weekly Herceptin for the whole year, so either 51 or 52 doses depending on how the doses were calculated.
tld - I had 14 weeks from surgery to the start of chemo. I had skin healing issues and surprise positive nodes so needed 4 more surgeries after the BMX.
All - NBN is an uncommon genetic mutation - like BRCA, which increases risk for certain cancers
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