TRIPLE POSITIVE GROUP
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Hi tld2017, that makes sense, I believe they also told me 2 tablets of Imodium 3 times a day, i.e., 4mg of Imodium three times a day. And I will see them in a month. I am excited to start this drug and also a bit petrified by the possible side effects.
From your signature sounds like you were pretty early stage with no node involvement (therefore lower risk of recurrence) may I ask you why they recommended Nerlynx to you? I am still trying to understand why some MOs are so keen to prescribe this drug while others are so reluctant. My former MO was adamant he wouldn't prescribe Nerlynx despite me having extended disease (including nodes) found at surgery after aggressive neoadjuvant treatment.
Best,
LaughingGull
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LaughingGull, my MO said at my first appointment with him that he would fight my cancer as aggressively as he could get away with and he has lived up to that for sure! He said the Nerlynx would up my chances of survival by just a few points but that I'm only 52 and he wanted to give me all that he could give me so that I could live for another 30 years. He fought insurance for weeks to make sure that I got the Perjeta along with the Herceptin from my very first chemo forward, even though my tumor was less than 2 cms and I had no node involvement. Honestly, I have not questioned the Nerlynx decision and I hope that I can get through it. As I mentioned in my earlier post, my MO admitted that patients do have a very difficult time with the Nerlynx but he really wants me to try it just in case my body can tolerate it. I have joined the Facebook Nerlynx support group and it scares me to read some of the posts. I am trying to remain hopeful but, without a doubt, I'm anxious about how this will affect me daily. Hoping for the best!
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I believe that the anti-D med referenced above is Colestipol. Here is the dosing and anti-D regimen used in the Nerlynx study conducted by Puma:
https://nerlynx.com/hcp/dosing/colestipol-regimen
The post by tld regarding the assertive treatment directed by her oncologist points to the type of questions we should be asking at the outset of our treatment - the biggest problem is that we often don't know what to ask about how we will be treated, and subsequently followed after treatment, when we are looking for an oncologist! It is a quandary for sure!
I hope that you all don't mind posts by me regarding treatment that I didn't personally have since I was treated before a number of currently used treatment modalities were available. I have tried to stay as current as possible so that I am a responsible participant on this thread and site. Conversely, I hope that I am an example of hope for those who did not receive some treatments due to stage/tumor size, or MO philosophy and are feeling like they missed out, or are worried about not having certain meds/treatment. I had adjuvant Taxotere/Carboplatin/Herceptin, BMX, ALND and no rads for a 2.6cm tumor with two positive nodes, and I am posting here more than 8 years later.
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I am so fortunate that my MO told me I didn't have to take Nerlynx after Herceptin/ I don't think I would have tried it even if he said I needed to. Unfortunately I had read the thread on FB for Nerlynx (I believe put on by PUMA the manufacturer) it was scary. But like its been said many times - its usually the people that have issues that post and the ones that don't have SE's don't post. Best of Luck
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SpecialK, you certainly are an inspiration to me!! I am not getting radiation too... And I am glad. I feared radiation more than chemo. (I am very fair skinned, get easily sunburnt and have literally hundreds of birth marks).
I was discussing Perjeta with my MO for several weeks during our appointments. We even asked several other oncologists from various establishments and the result was - not recommended in my case. I am right at the border for Perjeta, with tumor of 21mm and my positive node only had micromets. I see many people here get Perjeta even with smaller tumors. Well, the same goes for Nerlynx, I guess. I will ask about it, but I already know what my MO will say. She often speaks against overtreatment. Well, I guess I believe her. Nevertheless, I had asked for other opinions for most of the important steps and they concurred. I guess it's just the way it's done here....
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SpecialK, I am so grateful for your wisdom! You give me hope, which is so incredibly important!! I have stayed off this board (and everything else that was breast cancer-related online) for a little while because I was too overwhelmed - my daughter has been in the hospital for a chronic illness almost continually since the end of November. Now that my treatment is changing with the addition of Nerlynx, I knew it was time to get back online and talk to those of you who know what it is like to be a survivor and a fighter of breast cancer.
I don't know if my MO's aggressive treatment of my cancer is the best treatment, but I have nothing else to rely on and I must have faith in his knowledge. He shook my husband's hand after that very first appointment with him over a year ago and said that he would treat me with the same meds that he would if it were his own wife. My husband said he would trust him with my life and from that moment on, we have believed he is doing what he thinks is best to fight my cancer. I have pains every day, every day I worry that the cancer is back and spreading. But because of my daughter's illness, I have put my concerns on the back burner. The only way to get through my days is to believe that the treatment I am getting is the right one. I'll try the Nerlynx to the best of my ability and go from there. If I can't do it, I can't do it. Could it be too aggressive? Possibly... All of us are different. Our MOs are going to have vastly different approaches to fighting our cancer. I've read so many of your posts, ladies, over the last year, and I feel like I know some of you, even though of course I don't! I pray for you, not only for healing, but for peace of mind. Never lose hope, never lose faith!
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SpecialK, you are very helpful and also an inspiration in many ways. Please stay!
If there is one case for which aggressive treatment sounds warranted, I think I am it, since after pretty aggressive neoadjuvant treatment, I still had a 2.5 breast tumor, plus macrometastases in two nodes, with extracapsular extension and lymphovascular invasion, and I am 49 and in good shape. Still, my MO was not willing to even try this regime. Whereas the next MO, director of breast oncology at an NCI cancer center said it made total sense. Today I am starting it and I am still traumatized by the harshness of my former MO and fearing what if he was right and this is unneeded over-treatment that may destroy my quality of life?
Aaahhh the unknowns.
Going to meditation group now.
I will not join the Nerlynx FB group for the moment.
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LaughingGull, wishing you an easy transition into the Nerlynx treatment! Please keep us updated on how it is going! Goodness, going to a meditation group sounds like a great idea - I need to look into that!
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tld2017, sorry to hear about your daughter's situation. I have two young kids and they need me for many more years. I understand moving away from the forums for a while. This whole thing is so overwhelming.
Hope you and I both do just fine after the first month or two. Let's just start. I am with you sister.
I had the same approach with my oncologist, I trusted him with my life and wanted to believe he knew best. But sometimes he made me doubt, and was not been forthcoming with his reasons or open to discuss with me, just dismissive. He didn't like to be challenged or contradicted. I was disappointed and traumatized by this.
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tld, the meditation group is for cancer patients and it's offered at the hospital where I was treated first. I totally recommend it. It's fantastic. Heading there now. Please check the cancer supportive services at your hospital.
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SpecialK I too want to thank you for all the information you provide..it's helpful
tld.... I'm sorry your daughter is so very sick. This all has to be so hard on you. I'll say special prayers for your family.
I found out today, when my BS came to see me (post BMX ) this morning that the Taxol (neo-adjuvant) didn't work and my IDC has spread to my lymph nodes. At my next Herceptin treatment I am to meet with my MO to discuss meds he wants to add to Herceptin. I'm just so disappointed. My Nurse Navigator said maybe the spread wasn't detected in the ultrasounds and breast MRI because it was to small and the dye for the Sentinel node made it show up. She said the cancer could have spread there in the past 1-5 years!! So now I have to face radiation in my armpit and my L chest wall.
I don't know what I'll be facing for meds but I am going to tell MO to be as aggressive as he can to stop this crap from spreading out even more.
And I am most thankful for all information posted!!
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Nanette--I am so sorry to hear this. Still--I'm sure you'll get through whatever new treatment is recommended with flying colors!
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LaughingGull - great idea not to look at the Nerlynx postings. Keep an open mind. Best of luck.
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nanette,
Sorry you got these news today. Most hormone positive cancer do not have a complete response. I also had a clear MRI before surgery, then they found cancer in both breast and nodes during surgery. Long faces all around. Unfair, I know. Give yourself a bit of time to process the news and then....move on to the next treatment. I had radiation and one year of Herceptin + Perjeta and now Nerlynx. I think the FDA is about to approve this drug Kadcyla for adjuvant treatment of early Her2+ cancers that are still standing after chemo. This drug has shown to reduce the recurrence rates by half. They will probably recommend that to you.
Here is for a quick recovery from the surgery!
I just had a biggish lunch, and after that I fearlessly swallowed my first six Nerlynx pills. I am back at my desk working. Haven't dropped dead yet. Tummy noises right now. We will see.
Come on ladies. Let's get in formation to support each other and fight this beast as best we can. Onwards!
LaughingGull
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LaughingGull... 6 pills?? Omg bet your tummy was really full on that dessert lol but seriously that seems like a lot of pills! Are they low dose and that's why you take so many?
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tld - so sorry to hear about your daughter.
nanette - i also had a disappointing response to chemo. I will be doing Nerlynx soon most likely. I meet with my MO in two weeks and am supposed to let him know what I decided re: Nerlynx. I plan to try it.
LaughingGull - Thank you for sharing your experiences with your new MO and with Nerlynx. I agree with your new MO that the data isn't the greatest but there's no reason for a healthy person to not give it a go. Unfortunately that crappy data is the only data we have so we will have to make our decisions with it. I have been following closely, as I will be in your same boat soon enough. I am considering starting a water fast a few days after starting Nerlynx. You can't have diarrhea if you don't eat anything, am I right? Plus I need to drop the 10 pounds I put on during treatment, so maybe there will be a silver lining.
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I know I have really no business in giving advice re: Nerlynx , however, watching the FB posts - some did better by starting with a lower dose then working up to 6 pills. Or if SE's get too bad, stop, and start over at a lower dose and working back up. That had been my plan before MO said I didn't have to.
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Hey ladies...
Special K, it's always reassuring reading from you, I do draw strength from it so please don't stay far away from us here. If you don't mind me asking, did you get PCR when you had neoadjuvant treatment?
Nanette I am so sorry about the news. I am with your nurse navigator, I want to believe there was nodal involment which they missed during diagnosis and taxol alone can't take care of it. I am thinking, they want to give you the harsh chemo now. All the best going forward.
Laughing and others starting nerlynx, please share your SEs and otherwise as I will be done with H&P on June 6th and should be starting nerlynx afterwards.
June 7th will be one year since my mum passed from breast cancer. I don't know if I will have the will to celebrate the end of a very long active treatment knowing the next day will be filled with tears.
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Nanette - I was found to have a positive sentinel, initially declared clear in the OR, later found to contain cancer in the lab. That prompted a separate surgery to remove levels 1 & 2 from the axilla, which revealed more and larger cancer than the sentinel - unusual, and never picked up on any form of imaging including pre-surgical MRI. I am so sorry that you are facing this, and that you have to adjust your thinking to include more treatment than you anticipated. You will get through it and come out the other side. Repeat that to yourself as necessary and know we are here to support you.
princess meg - prior to 2013 and the FDA approval of Perjeta for early stagers receiving a taxane and Herceptin for tumors 2cm or larger, or high risk smaller Her2+ tumors with positive lymph nodes also, the only people who had neoadjuvent chemo were those who needed to shrink tumors to achieve clean margins. The vast majority had surgery first and it is a testament to how important this thread is, and the folks who post here, that the inception was populated by those who had adjuvant chemo with me in early 2011 and the thread is still going strong. I sure wish none of us had to be here but the TP thread has been invaluable to me, and I hope to many! Due to my inability to stay out of the OR, having BMX, five weeks later ALND, two weeks later emergency surgery due to my expander coming through my skin, another skin repair shortly after, then finally two weeks later removal of left expander, I started chemo a full 14 weeks after surgery - not optimal to say the least. I had to assume chemo and targeted therapy was doing the job, I had no measuring stick to determine whether it was working at the time. I am currently flying without a net - I was taken off anti-hormonals six months ago, after 7 years, due to bone death in my jaw and the need for some very invasive dental work. The Breast Cancer Index test indicated that I fall into the 10% of patients who, at the five year point, have a high risk of recurrence but a low benefit from anti-hormonal therapy. I had planned on 10 years, but no can do. Have been working on all the holistic things I can to optimize, but it was hard to give up taking that pill every day.
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Hello everone, I'm back, dipping my big toe in the water, checking the temperature. I've been gone for a long time from here becoming stronger mentally. This is a trial basis to see if coming back will increase my anxiety or set it off. Not that there was one particular thread that set me off per se but, just the daily visit(s) were maybe too much info at the end of my treatment. I wondered daily if I needed to do more etc., etc.
SpecialK, May I ask what the holistic approaches are, that you take now that you're off hormone blockers? Do you have a recommendation on a vaginal moisturizer? Not necessarily a lubricant for sex but, more importantly for everyday QOL?
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All,
For those of you who switched to Kadcyla from H or HP after NAC and surgery, is insurance approval an issue?
My wife's current MO never committed for Kadcyla although we mentioned it to her a few times before. About 3 weeks ago we saw another MO for the second opinion and their assessments are "...her residual disease is tiny, so we do not recommend further therapy. Her residual tumor was low grade and strongly ER+ so it not likely she would get much benefit from treatment. However, she would have qualified for the KATHERINE trial.... we will poll our group to see how others feel about this and get back to her with final recommendations".
Finally today they got back to us and the NP said that they believe the benefit of switching to Kadcyla should still be there although it could be small for my wife's case. With only 4 more HP infusions left, what would be our option? still possible to switch?
Thanks a lot.
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SpecialK. I have learned so much from you. Thanks again
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SpecialK thanks for being elaborate with your explanation. I do want to ask though, what is OR and what is ANLD?
I am interested in knowing your holistic approach now that you are flying without any protection for the hormone positivity.
I was actually considering going to Mexico after treatment to try those immune boosting therapy they offer over there even if it’s once every year. Just trying to do my best and have peace with it.
Wish there was a clear cut way to know what is “enough treatment” what are the best “protective measures” against reoccurrence. Oh well...
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moody - hey! Good to see you - hope that coming here on occasion can be positive and life affirming for you! You are not the first who felt a need to step away to keep your head right. When I go out of town I try not to log on, I think it is good to take a break. On the holistic front here is what I’m doing, little to no alcohol - not a problem for me as I didn’t drink much prior to diagnosis due to a previous corrective surgery for reflux which causes pain when I consume alcohol, particularly hard alcohol with citrus - like a margarita. To lose chemo and aromatase inhibitor weight gain I did the Virgin Diet. This is an anti-inflammation food plan based on the idea that there are foods that some are sensitive to that create inflammation in the body. It is an elimination plan where you cut out these foods (eggs, dairy, soy, sugar, corn, gluten, peanuts) for a month, then introduce them back one at a time for a full week to see if they cause trouble like headache, gastro upset, etc. I lost 23 lbs. with no exercise because during that 6 months I had 3 surgeries. I have resumed this eating plan, and returned to the gym. I did 23and Me testing and it turns out I have the genetic variant for celiac also, so some of my problems with food are further explained.
Prior to diagnosis, I was on a statin for high cholesterol. While on letrozole I decided to see if I could discontinue to see if my muscle/joint would lessen. I weaned off, my numbers were stable, but the unfortunate permanent side effect is elevated blood glucose. My A1C is normal, but the blood sugar means there is a potentially inflammatory environment, not thought to be a good thing for cancer patients. There is some evidence that Metformin helps prevent breast cancer recurrence.
https://cancerworld.net/cutting-edge/can-metformin-deliver-for-cancer-patients/
Likewise, my MO has recommended a daily 81mg aspirin also. This is also recommended by my vascular surgeon post endovenous laser treatment for incompetent leg veins, so I get a two-fer there.
https://clinicaltrials.gov/ct2/show/NCT02804815
I am taking some supplements - vitamin C, Co-q10, omega 3, probiotic, and just asked at my recent MO appt about modified citrus pectin.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2782490/
I have trouble maintains vit D level, partly due to very limited sun exposure because I have had many skin cancers. My MO has prescribed once weekly 50,000iu vit D Rx, and it seems to be the only thing that can raise my level. I tried over the counter vit D but it took forever to raise it just a few points and it was still too low - below the low end of the range. The prescription is working much better - I would like to be in the 60-70 range.
I started on Prolia in 2012 because chemo and six months of letrozole took my pre-existing osteopenia to mild osteoporosis. I was an exceptional responder to Prolia, I resumed normal density by the fourth injection. My MO discontinued the Prolia a year ago, which was prophetic as I needed invasive dental work done - not caused by either Prolia or letrozole, but I can’t be on either because of it. My DEXA done several months ago showed I have maintained density even though I am off Prolia - so, yay! Bone health is important as porous bones are thought to be more hospitable to mets. Some MO start their patients on Prolia as a preventive at the same time their patients start aromatase inhibitors.
I am also setting up a consult with a cardiologist that practices at the NCI center close to me. I have a heart murmur so I want to be checked, and would like an echo to double check LVEF. I had them during the year of Herceptin, but haven’t had one since. This was ordered by my primary care but when I ran this by my MO he thought it was a good idea
So, some of what I’m doing is holistic, some is pharmaceutical. Not a certainty that any of it will make a difference but I’m feeling proactive going forward!
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OR is operating room, ALND is axillary lymph node dissection, the surgery that removes all the lymph nodes in levels 1 & 2 of the axilla. Back in the day ALND was routine with mastectomy/lumpectomy. Sentinel Node Biopsy (SNB) was an innovation that prevented unnecessary removal of healthy nodes by identifying the node closest to the breast with dye and/or tracer. My BS was actually one of the pioneers of SNB, and the mapping that helps eliminate complications of lymphedema, pain, numbness. Both my BS and MO wanted ALND subsequent to my BMX specifically due to being Her2+. That surgery revealed a big positive node further up even though my SNB showed only 20 isolated tumor cells (ITC). This only happens between 5-10% of the time when the SNB is “clinically node negative" but Icommonly fall on the wrong side of stats. No imaging showed this large node, including MRI, and it was not palpable. I have a history of poor imaging, mammo totally missed my easily palpable breast tumor and TVUS missed a 3cm pre-malignant ovarian tumor found during hyst/ooph surgery.
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SpecialK, very well written. I read every word like it’s a novel. I can’t believe I use the term “OR” as operating room yet it didn’t click in my head. Am I the only one who feels dazed half the time? Don’t get me started with the chemo brain, a lot of information just fly out of my head, it’s shocking!
So far I have somehow been able to maintain same weight since after chemo but I do tend to eat more often now. I might try the Virgin diet, just to see how it works.
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princess meg - you are not the only one who is occasionally dazed - my signature move is trying to put on reading glasses when I’m already wearing them...
The Virgin Diet is initially hard if you are consuming sugar regularly, or are particularly attached to dairy or other foods that you can’t initially consume. I spent a lot of time reading labels looking for hidden stuff - there is sugar and soy in a lot of things. I was initially introduced to this way of eating by my former boss - she has significant hereditary arthritis. Needing dexterity to maintain her blood bank lab licensing meant she was medicating the pain in her hands, and she was still waking up every night with throbbing discomfort. Her DH found the diet online. She started and within a week she could make a fist without pain! She was not trying to lose weight but ended up 20 lbs lighter, back to her college weight. I decided to try it to lose weight but also lessen joint pain. Both happened for me and I just felt better. I should add that I am a very sensitive person - I was allergic to milk as a baby, have many pollen/drug/topical allergies, so it makes sense that eliminating things that are common allergens or irritants, or are farmed with pesticides, works for me. Some find it too hard to give up so much, but after a while I didn’t mind miss those things so much and since there is not so much portion restriction, I’m not hungry all the time. This way of eating is similar to Whole30 and Paleo in that food in whole form that is unprocessed is thought to be better. Lean protein, low glycemic index fruit and vegetables, brown rice and non- flour pasta are the basis for me. Here is a good link that explains. I never did the two shakes a day thing and I still lost. My shakes are Plantfusion (vegan) vanilla powder, almond milk, and frozen organic strawberries. I initially used chia seeds but now leave them out. I really only re-introduced eggs, but I eat them sparingly
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SpecialK, thank you so much for sharing the link. I will go over it and take notes.
I have stopped sugar for almost a decade before I got diagnosed, frizzy drinks and stuffs like that but I know there's still sugar agent in some things I eat like wheat bread, whole grain bread. Bread and pizza are my main addiction. Eggs I still eat but not very often. For diary, I do Greek yogurt but no cow or goat milk, I take almond milk. I am not big on diary basically. For alcohol, I was never a heavy drinker and since I got diagnosed, I have not had any alcohol so I guess I am not missing it after all.
I have major arthritis issue with my hands especially the right one (cancer side) it is hard to make a fist and even worse in the mornings. I spoke to my doctor about it and he said it's because of letrozole. I don't know if you ever had that issue while on HT.
One more reason to try this virgin diet!
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Welcome back moodyblues !
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rljes, thank you!
Specialk, did you have the chance to read the end of my post? Was wondering, if you had any thoughts on this...if you could share. My onco and my gyno have differing opinions even on the lowest (4 mcg twice a week) of the rx that I mentioned. Thank you also for your response on the holistic approach. I can say that I had to move from the baby aspirin from each day to every other day because of bruising.
The break from the group here, was much needed at that time although, the reality is many women die from this disease BUT many stage 4 are living a very long time and thriving.
A woman in my support group at the hospital said that her MO said that immunotherapy for triple negative has been approved! Although I am not triple negative, I am beyond excited for them.
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