TRIPLE POSITIVE GROUP
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It was 12 years ago today that I had my lumpectomy followed by chemo, herceptin, rads and arimidex. I was 63 and now I am 75 and am fortunately in very good health. When I was first diagnosed I had no idea what I was going to do and I had always been afraid of breast cancer because my mother died of it when she was 56. When I look back I am amazed that I had a wonderful surgeon and a wonderful oncologist (who was a second opinion--so if you are not sure about your oncologist get a second opinion because we will be with them for a long time), the radiologist made me laugh and I can't believe how kind everyone was--I left so many appointments being amazed how nice everyone was. So when I look back I feel very lucky that I still can't believe how nice everyone was. Gals, you can do this!
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cowgirl - yay!
racheldog - yes, it is a crapshoot, but the odds are on your side - particularly as an early stage Her2+ with treatment. All of the adjuvant treatments for Her2+ disease have increased the DFS by a statistically significant margin. If you Google regarding DFS percentages for early stage Her2+ patients you will see study after study that confirms this. I had a 2.6cm tumor, two positive nodes, and was treated with mastectomy plus ALND, no rads, adjuvantTCH and no other adjuvant treatment as none were yet approved, and 7.5 years of aromatase inhibitors. Still here at almost 11 years. Hang in there, it gets easier as time passes.
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Seems like this is all a crapshoot. You can do everything right and then it comes back
@Racheldog - Yes, crapshoot is right. I'm only a year out of surgery (this weekend in fact) and, I just finished Kadcyla in April. I'm hoping for the best and taking everything treatment I can (even fighting for one). After that it's out of my control. Just have to live my life in the present instead of worrying about the future
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It has been a long time since I posted. This is a long post with some background.
My husband (my Caregiver and the one who used cold caps to save my hair) was tattooed for radiation today. Friday is his first chemo with Taxol and Carboplatin.
He has Adenoid Cystic Carcinoma; a rare head and neck, non-smoking related, cancer affecting .2% (point two percent) of the population. His ACC decided to attack his left lung which was removed at Vanderbilt Medical Center in late April. His Primary Care was treating for pneumonia in December until DH started coughing blood in January.
The only way to remove the cancer was to remove the lung. Even with the lung removal, the Surgeon could not reach a small amount on his aorta arch.The look of total devastation on the Surgeon's face will remain with me forever when he said, "I could not reach it."He genuinely believed he would cure DH.It was a five-hour surgery … I mean 5 hours of actually operating.
Clear margins are usually not attainable either. Thus, both chemo and radiation are his follow-on treatment.
We have had several conversations about removal of a lung or amputation of both breasts. DH said he agreed to the surgery because he did not want to leave me. If it were just him and because he has peace with God, he would have let the ACC take its course. Dang, I got lucky with this marriage!
The strangest thing of all of this is that DH is really healthy. He NEVER attended sick call for 20 plus years in the US Army. He had one hospital overnight stay for a hydrocelectomy and that is it.
When I first heard that he had a mass identified by a contrast x-ray, who did I contact when DH was on the phone with his Primary Care? I texted my Breast Surgeon. He took control and called every Specialist he knew arranging for immediate access. He even attended DH's bronchoscopy and called me before the Thoracic Surgeon did. He gets every report and record on DH.
After texting Dr Z, I wrote the BCO Moderators. They gave me great references. I am better to walk this journey with DH because of BCO. If you have $5.00 to contribute to BCO, please do. Their care never ends.
When people at Vanderbilt asked who is Dr Z in your care? DH replied, "He saved my wife's life and I love him." Quick background is that Dr Z got clear margins when he removed my lump during my lumpectomy. It was a wire-guided surgery, and there was no "marker" in the lump. He brought in a portable x-ray machine to find the marker and there was no marker. He removed tissue outside the intact lump looking for the marker. There was no marker. The tissue he removed outside the intact lump was invasive cancer that eventually led me to a Breast MRI that found a 4cm Lobular Carcinoma in the other breast. I am alive to be DH's Caregiver because my Breast Surgeon did not quit.
I have often questioned, why breast cancer for me? What was I supposed to learn? I now know. I am the Caregiver. I know what to do because we have walked this journey before. And I can be bitchy. I encountered a MD prima-donna (not known by Dr Z) who told essentially told me that I had "no need to know" about an x-ray comment. Let's just leave it at this, he told me everything that I wanted to know, and I got no other lip from him.
So … why am I writing? I cannot find the post but someone from Australia wrote about a cream given to radiation patients that is phenomenal. I want to know if anyone knows the name of that cream. You know the whole story and why it is important.
Please, if you can find the name of this cream let me know.
Love, Vicky
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CoachVicky,
Sorry to hear that news but know he was a fighter for you and you can be for him. Holding you close.
As for the "crap shot" - yes, but treatment gets better every year as does earlier diagnosis. The advice I got early in my journey is to make the best treatment decisions for YOU and then don't second guess yourself. TP is a long treatment regime but it usually works.
1946Taco (formerly known as Taco1946). I had password issues.
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Thank you Taco. Thank you. Good to hear from you again.
Vicky
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CoachVicky,
I'm sorry to hear about your husband but happy that you've received support from your surgeon and BCO.org. I wish I knew of the cream you were talking about! Best wishes to you both. ((Hugs))
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coachvicky - oh my friend, I’m so sorry to hear about your DH, but I have every hope that he will make it to the other side of this ordeal with your care. I know how fiercely you support each other. Here is an older post of mine, about rads skin care that included a regimen someone used (I didn’t have rads) that includes a cream from Australia - I don’t know if this is the one you’re looking for. Scroll down the page for the post.Please keep us posted on DH’s progress. Sending you both my love and good thoughts.
https://community.breastcancer.org/forum/69/topics/810058?page=106#post_3881480
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Thank you Special. I think this is it! I did not have radiation either and I am lost with this part.
I knew you would know.
Love, Vicky
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coachvicky - happy to help, hope that is the one.
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Hi coachvicky,
Sorry to hear about your husband. I know nothing about lungs or your husband´s cancer but am optimistic, because:
- He is in good hands. You are a fantastic caregiver.
- My grandfather had one lung removed when young, yet he lived a long life and died of something else.
LaughingGull
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Thanks Laughing ... I read what you wrote to DH ... he got a good chuckle out of it.
Vicky
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Cowgirl, Morrigan and SpecialK---thanks for all your replies. I went into this very early stage tumor with all the gusto in the world. Then when I could only do 4 rounds of Kadcyla (pneumonitis, early and recovered) it was like being shot down and spooked about continuing anything. I am doing radiation now and then back to Herceptin. Not even finding radiation a picnic. Two more weeks of 4 week plan. Kind of backwards doing radiation first but two oncologists thought that was ok to do rads first. The Her2+ was the crappy part of the path report. Thus the chemo. I am so trying to live in the here and now. Before bed to get on CALM meditation or other similar relaxation computer finds This can be a lonely journey if you live alone but I am glad to hear that others with HER2+ are doing well without recurrance.
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Racheldog - hang in there. TP is much more of a slog than a race but Herceptin has been a game changer. I too was shocked with the HER2+ diagnosis as it hadn't shown up on my biopsy report. I was only able to tolerate 8 sessions of Taxol but just had another NED mammogram. I was diagnosed Nov. 2016 and am very much living my life as I approach 5 years. You will too.
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Hi everyone. I wanted to follow up on my post about about my appointment with the cardiologist. He did notice some changes in my heart between my last two echocardiograms from the herceptin and has prescribed me 3 different meds as a precaution to keep it from getting worse.
I'm also wondering if anyone has had problems with hand pain, numbness and trigger fingers. I started out with some numbness and tingling just at night right after I finished chemo. It has progressively gotten worse. I wake up several times during the night because of my hands hurting and several trigger fingers. I'm starting to feel like my hands are turning into claws. I asked the oncologist about it and he ruled out neuropathy and suggested it might be carpal tunnel or arthritis. I've had carpal tunnel and it definitely isn't that and I'm guessing arthritis doesn't come on so quickly. I have an appointment with my PCP in a couple of weeks but am hoping someone has had a similar experience and can give me some guidance and maybe some times how to keep functioning. Starting to drop everything. Oh, I know it isn't from tamoxifen as I hadn't started it yet when it started.
Thank you and hope you are all hanging in there.
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Second opinion, perhaps? How can your MO definitively rule out neuropathy? I developed peripheral neuropathy in my fingertips during Taxol. It was just numbness for me, but for some people, neuropathy can be pretty painful.
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I had very painful neuropathy in my feet from the Taxol. I agree, arthritis isn't usually sudden onset.
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My neuropathy was at its worst about 8 months after I finished my TCHP (but was still on kadcyla)
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i don't know how they can rule out neuropathy, Kadcyla and TCHP both can cause Neuropathy.
I have seen other people talk about getting neuropathy like symptoms due to low B12. Have them check your B12 during your next bloodwork to see if that's causing it
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msmurphy - sorry to hear about your hand issues. Couple of thoughts - there is such an animal as late-onset CIPN (chemo induced peripheral neuropathy) so it seems premature or dismissive of your MO to say it couldn't be caused by that. Secondly, you mention tamoxifen and not having started it yet. Are you premenopausal? Did chemo put you into chemopause? The potential reduced estrogen may be causing at least the trigger fingers. This happened to me on aromatase inhibitors, but joint pain and triggers can both be attrributed to reduced estrogen so I am wondering if that might be at least partially involved if chemo messed with your cycle. Has there been any mention of using any nerve conduction meds like Neurontin or Lyrica to help? I'm sure more meds are the last thing you want, but it sounds like you are uncomfortable. I had triggers in multiple fingers, my right thumb, and left ankle but it was definitely caused by letrozole. I switched to arimidex and immobolized the fingers/thumb with training tape (like the Coban wrap they use when you have a blood draw) and that helped. I later switched back to letrozole but took a brand with less fillers and additives and had no further problems.
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Hi Everyone,
I'm coming up on 9 years past DX. In general, I'm feeling great and grateful and still deeply nervous with each mammogram or MRI. . I have been on Tamoxifen for 8 years. I thought my MO wanted longer, but the nurse practitioner recently said that my treatment plan said 7 years and that I'm in a gray area as to how long to take it.
Since I've been taking tamoxifen since I was doing radiation, and right after chemo ended, and I've since become menopausal, (I was premenopausal at 47 at dx and never had a period since), it's hard to know which of my symptoms are due to tamoxifen. I can manage most by taking ginger and magnesium (constipation and leg cramps); I've gone mostly gluten free (some type of eczema when I have too much gluten or sugar/alcohol); I do yoga and exercise which keeps my joints feeling fine to do more vigorous exercise. I drink lemon water because I feel the tamoxifen makes me more acidic. Lately I felt a prickling in my feet which I had never felt- and I"ve started taking Vitamin B and that seems to help. Most of these things I can live with and just have become part of my routine so I don't consciously think about them in my life (Just have a shelf of supplements).
But I'm worried about long term affects of Tamoxifen on my body as these effects accumulate. At the same time, literally the LAST thing I want is recurrence. I don't really want to take an A! unless I really have to.
So I've decided with the MO's consent to take a 6 week break until my next appointment and we will discuss.
I cannot find any good recent research about a protocol for triple positive and hormonal therapy.. I know that by stopping I am stopping a treatment that may be keeping the cancer at bay. But I also know I've been on it a long time. I'm wondering if there's research about effectiveness with triple positive and recommended length of time, and taking breaks, like, for year. Could you do every other year?
I'm so excited to be off of tamoxifen, In the past, I've missed a couple of days in a row but not enough to make a difference. But I'm also kind of terrified. I'd appreciate hearing what others' MO's have to say about this and what people who have been treated more recently have learned about this.
Thank you.
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OG here!
Boogirl-the Metformin study is 1650 mg, I think. My PCP prescribed 2000 and I take 1500. I just cut a pill in half. I have a lot of extra Metformin lol.
Redcanoe-My BFF, a nurse practitioner for my PCP, saved my life. She forced me to see a breast specialist and went with me, after the general surgeon who did my biopsy said to just take and AI. Turns out the breast specialist did another two biopsies to find the cancer and that it was triple positive. In the meantime, I couldn't sleep, couldn't eat, cried continuously, heart was pounding, etc. I saw her for a sinus infection, and she said I had tachicardia, and that I had sent myself into a panic disorder. Prescribed Cymbalta as it would also help with potential joint pain from the treatment. My dose was a low dose but within 48 hours, I was a new person.
I weaned off of it during chemo when I was thrown into menopause. Took tamoxifen and had hot flashes so dramatic during the day that when I felt one coming on, I would literally get anxiety as I would be drenched. Onc put me on effexor which helped some. Then weaned off that. After three years, I had an endometrial issue and my OB/GYN called the oncologist while I was sitting in the room and they immediately took me off tamoxifen and moved me over to arimidex. Hot flashes were bad but not as bad. But joint pain was terrible. So oncologist put me back on Cymbalta low dose. Immediately better.
I have been on Arimidex, not the generic, for about 7 years, with one short break. I think I will just stay on Cymbalta forever lol. I figure between the joint pain help, and the anti anxiety part, I'm just better off.
My current onc is ok if I quit Arimidex, but wants me to stop Premarin if I stop Arimidex. I weighing my options. It makes me nervous to stop even though it has been a total of ten years on some version of an AI.
MsMurphy-I went to an ortho for issues with my thumb. The guy I saw turned out to be someone whose mom had BC. He said I had deQuervain's synovitis and he said it was due to Arimidex, as his mom had the same and he had done extensive research. I got a cortisone shot which helped immensely. I still have an impossible time opening jars. At some point I might have to consider surgery but am trying to avoid it.
My big issue now is kidney stones. I had one that was stable forever and during chemo part of it broke loose. Oh my...the pain. Had lithotripsy. All good. Last year, July, woke up with extensive pain. Went to ER...kidney stone in ureter...had a stent for ten days...AWFUL...then they went in and removed it. All good. Literally less than one year later, a month ago, same thing, other side. ER again, only this time, I'm stuck in what I call a hallway room. Literally in a hallway with a curtain on either side of me. Very little attention. They put the stent in at the end of the day and say they are keeping me overnight...in an ER room with no window or bathroom ar, not a normal room as they are supposedly full and diverting people. I was ok since it was just overnight. Next day, my white cell count has jumped, so the internal med person won't send me home (even though there was no fever). Now I am annoyed as I am stuck in this crummy room, going to a shared bathroom and no shower. (I did find out they had one but not my own). I told them I would comply one more day, but if by the third day things weren't better, they needed to locate a room or I was checking myself out. Nurses couldn't believe the doc didn't send me home because it was not that far over the norm and they said it was just the procedure. Sure enough, it dropped by the following day, not to normal but enough they weren't that concerned. Told me to get bloodwork a couple days after to make sure and by then it was well below. One week later, They went to retrieve it, and instead of dropping down, it went back into my kidney, lol. Doc had to do a bunch of extra work to get it out, but all good now.
I am trying to drown myself with water, but I hate it lol.
LAGO!!!! So good to see you checking in.
Coach Vicky-so sorry to hear about your husband, but you are doing exactly what I would do. Hit up all my docs for advice. He is in good hands!
To everyone else...I am NOT the poster child for living beyond breast cancer. I am sure that is no surprise after reading this. Every pain and I think it is back. I would like a PET scan ever couple years if they would do it, lol. Rationally I know that I could drop tomorrow from a heart attack or something, but I still can't get past worrying about a recurrence rolls me to stage IV. However, it does get better. There are days when I don't even think about it. On the good side, I have learned to be my own advocate and not to accept some pat answer. Sometimes you have to fight back. And the troublemakers typically get some action and answers.
I have also learned that oncologists can get any test they want approved. My current ONC goes through my charts and the reports from my PCP. When I mentioned I had a polyp on my gallbladder that the gastroenterologist said we could just monitor for a couple years because it was small, she rolled her eyes and said we are doing another ultrasound. I haven't convinced her to order a PET scan yet, lol, but she does all the cancer marker tests I want to give me comfort. At least for a day.
So...here I am ten years later, depending on what date you pick. Diagnosis...ten years. The third biopsy that finally identified the cancer, removed and had clean margins, was January 2011, so that is what I consider my date. So I have another 6 months.
Keep the faith!
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And sorry about the book I just wrote above!
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Thank goodness for your BFF fluffqueen. It sounds like it's been quite the rodeo with endocrine therapy.
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fluffqueen,
I'm on my sixth year of Aromasin, and have been taking Celexa to deal with some of the side-effects. I think I'll stay on Celexa forever, too!
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Thank you everyone for weighing in on my hand issues and asking some great follow up questions. The reason my oncologist ruled out neuropathy seemed to be based on 2 things. The first is that despite the numbness and tingling, I haven't lost any sensitivity. The other is that it is that if I change positions, it will stop or lessen. He said neuropathy would be continuous. I do believe it is some after effect from the taxol, especially now that my hips and ankles are also bothering me. I am going to keep pushing it when I see him at my next infusion. Short term, I read that B6 can sometimes help so I've been taking it and the pain seems to have lessened although the tingling and trigger fingers have gotten worse. Looking into adding some B12 as well. Really hoping my PCP will be more helpful on it and just need to hang in until the 18th.
Oh, and to answer your questions SpecialK, I was taking my birth control continuously to stop periods due to endometriosis prior to my BC diagnosis and then quit right before chemo started. I haven't head a period in over 10 years so I'm really not sure of my menopause status but since I haven't had any peri or menopause symptoms it is hard to say if it is estrogen related.
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msmurphy - try the tape on your fingers - I wore it all day and night and could still function since it is stretchy. I have also heard that splinting with a soft brace can help with the wrist/hands - an OTC type from the drug store or Amazon.
fluff - hey girl! Sorry to hear about the kidney stones, that sucks, but good to "see" you!
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I was just reviewing my survivorship plan that my oncologist provided to me (planning documents) and saw that they have my Kajinti treatment ending in August 2021 rather than January 2022. That would mean 11 treatments rather than 18. Is that a normal treatment plan for IDC stage 2? FWIW, I did 6 rounds of TCHP, had SMX and there was no residual cancer found. No cancer was in my lymph nodes, so no radiation. I plan to discuss with my oncologist when I see her during my next appointment and do some google searches, but curious about others experiences. Thanks
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Hmm, it should be 18 including the 6 given while doing TCHP. Supposed to be a year of Herceptin.
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Hello, ladies
I want to ask, it is regarding my young friend(in comparison with me), she is 43 years old. She has stage 2B and going thru chemo now, before surgery. She has 2 places in the same breast which are ER+/PR+, HER2+.
Originally was recommended to have double mastectomy(another breast-preventive)
But another surgeon is suggesting to have at this point 2 lumpectomies, less aggressive approach.
I know it depends on also how person feels. I am, for example, would be more scared of recurrence than anything else.
But i am not her, it is my approach.
I know it is personal decision, but would appreciate any opinions, thoughts.
thank you so much in advance for any word.
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