TRIPLE POSITIVE GROUP
Comments
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moody - I don't have any personal experience with products but have read that people have had success with mediating the dryness and discomfort with coconut oil that you roll into little pellets and keep in the freezer - they are used as a suppository. They need to be small enough not to be too messy as they will melt when you use them. I will say that my MO is not opposed to topical estrogen cream. This came up in conversation regarding my history of frequent UTIs. He wanted me to relay this to the urologist if he felt this could be beneficial. The urologist's wife - also a physician - has also had BC. He was reluctant to use the topical estrogen off the bat, and further investigation revealed the need for urethral dilation. I was born with a stricture, which was corrected with that same procedure when I was in college and suffering from constant UTI. The stricture had recurred, likely from a perfect storm of hyst/oooh and femara. Here are two lists from a discussion thread:
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Thank you Specialk for your reply on this, as well as sharing what your MO and urologist were saying. My gynecologist was against the coconut oil when I asked.
I never even thought about the olive oil and will look more into that...when I was a child my mother used it on a stitched up gash on my nose after a terrible fall, hoping to help with healing and scarring. It worked.
Thanks again for your help!
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A few weeks ago I told my mother "Hold on, I have to find my phone."
I was talking to her on it.
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WC3 thank you for the laugh. I go looking for my glasses which are already on my face
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moody welcome back!
Laughing...good luck on the Nerlynx!
Nanette- so sorry to hear your news!
Gearing up for a big week next week. See the OB/GYN on Monday for my annual. I was convinced Aunt Flo had returned...but then didnt get a period this month. I am confused and have sooo many questions about what is happening. Then Thursday is mammo day, and Friday is the annual visit to MO. She and I also have a lot to talk about. I'm afraid and worried now, and I wasn't before. I want to go back to being not afraid and worried. Everything is benign now...but will my endometrium keep getting thicker...i have 6 more years on tamoxifen...will I have to be monitored now? Biopsies? I don't want all that! I have made my list of questions for both doctors!
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I have a question. I'm healing up very well the nurse changed my bandages today and I have to tell you omg the relief of taking that compression bra off for 20 min...ahhhhhh tomorrow the nurse and I are going to coordinate our times and I'm going to show before she gets here. I've been looking forward to showering.
Ok onto question...below the mastectomy site on leftie I get these weird burning sensations at night when I'm relaxing and winding down for the night in bed. To night was the worst. See they come in waves normally only 1 or 2. Feels like a hot branding iron is being pressed onto my skin....whole thing normally only lasts about 15-20 seconds. My visiting nurse thinks it could be a nerve that was severed and as I relax something bushes past that raw end. Tonight I has like 6 of them as soon as one wave would end another would start back up again and the intensity also increased with each attack. Left me with a bad headache from the pain. Any ideas of what this could be?? DD brought me an ice pack and that seemed to help ward them off.
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nanette - it does sound like nerve pain which can be intense as swelling either increases or reduces after surgery. This is usually temporary but can be helped by meds used short term like Lyrica or Neurontin (gabapentin). Be careful with icing over the skin of the reconstructed breast, it can constrict the new blood flow that is being established after the removal of the breast tissue, and is a risk for necrosis of the skin.
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thanks SpecialK I'm icing only my ribs under and away from my missing girl. I hear you and I will be very careful i only had it on 2x-s for about 5 min and it gave a ton of relief from that fire. Thanks 8)
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nanette7fl:
I felt like the skin around my surgery sites was sunburned for the first few weeks.
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Nanette, I'm sorry to hear your news. I will keep you in my prayers.
Thanks, everyone, for the prayers for my daughter. I would take every illness in the world to save her from her own illness.
LaughingGull, how is the Nerlynx going? I was supposed to start it tomorrow but my pharmacy had to special order it and it is not in yet. I'm hoping it is going well for you!
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Laughing - agree - how is Nerlynx going? I'm so curious about it.
Had the Ob/GYN appointment today. He basically told me that that is simply what happens with Tamoxifen, and that since I am so young, and still have 6 years on the drug, that he bets I will have multiple biopsies and episodes over the next few years. He said my biopsy is "good for one year" so if I bleed again between now and next March I don't have to call him. When I told him the period was unbearable heavy he told me he didn't doubt it. When I asked if we could just remove my ovaries and such, he said no - that he wouldn't do an invasive surgery when I had benign results, and reiterated that this was simply the way it was going to be. That treatment has other consequences, and this is one of mine. I've had this doctor for 15 years...he said it all kindly - I am not mad at him - but it was so depressing. I'm trying to be happy about benign results but that this is my "new new normal" is so upsetting. Mammo Thursday, MO on Friday. onwards and upwards. blarghhhhhhhhh
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Ugh, tres--so sorry to hear that. Hoping the bleeding calms down going forward. Have fun at the rest of this week's appointments. (<--kind of kidding there)
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Tres - I had a hysterectomy - ovaries and uterus at age 37 for polystic ovaries and have never been sorry. Even in the 1980's the surgery wasn't much. I don't understand your doctor's reasoning other than he's never had a "heavy period." You don't need them anymore and it's just one more cancer magnet to worry about. Have you thought about a second opinion?
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Hi dear positive ladies,
Tresjoli, I got my ovaries removed last year at 48 and never looked back. The surgery was super easy. Like you, I had one episode of bleeding, thickening of the uterus, with subsequent biopsy and hysteroscopy at 47, pre-cancer, and it was terrifying. The prospect of having this as the new normal, and keep doing biopsies now and then, hoping if it will come back as benign doesn't sound like fun. What problems did the doctor refer to, specifically? There is the potential loss of bone and then what? I would bring it up to the oncologist. My MO was totally on board with me removing my ovaries, and so was a cancer gynecologist I talked to. Can you try to get a consultation with an oncology gynecologist, for an in-depth explanation of all risks, and peace of mind? At what time did you expect to go through menopause, based on family history?
Thanks for asking about my Nerlynx status. It is ongoing. Today is day 6, and I was hit with D on day 4. I have been checking the scale and grades, and I think I now have grade 2 diarrhea, mild to moderate. I talked to another MO who has had a handful of patients on Nerlynx, and she told me that, on top of diarrhea, fatigue and nausea, and even loss of appetite are other debilitating side effects of this drug. Thankfully I don't have nausea or fatigue and loss of appetite at the moment and I hope I never get them! If the D is all there is, and it is temporary and vanishes after the one or two month mark, then I will be happy. If things get much worse I may reconsider.
LaughingGull
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Tresjolie:
It's perfectly fine to have another ob/gyn do the procedure if you want everything out.
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Tresjoli - I think a doctor's job is to inform you of the pros and cons and let you decide, not to decide for you. You aren't the first person I've heard of who couldn't get a doctor to do an ooph though. I have a stage IV friend who can't find a doc to remove her ovaries, even though her MO agrees it would be beneficial for her since otherwise she'd be on OS for life anyway. Good luck finding the right doctor. Talk to your MO and maybe he/she will have a recommendation.
LaugingGull - Thanks for the update! I am following closely, as this will be me in the very near future. I meet with my MO on the 17th. Good luck with it all!
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I will keep updating!
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laughing, thanks for updating us on nerlynx, I am paying attention in hopes to be encouraged towards June/July when I am scheduled to start. Best of luck
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Thanks guys. I will talk with MO about whether or not I should engage another GYN for a second opinion. I may just do that. Today I had my mammo...new calcifications showed up in the surgical field on the left breast for the first time since I had surgery. Birad 3 and 6 month follow up recommended. I really can't wait to see MO tomorrow. She and I have sooo much to talk about.
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hi all, I’m curious if those of you getting or received herceptin and Perjeta as adjunct therapy saw you WBC drop. Mine continues to drop each month and is now close to the bottom of normal. I have 6 infusions still to go.
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My WBCs have not yet recovered from chemotherapy (I am 6 months PFC). There's an old post here about that. Apparently it happens.
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My Dr doesn’t even require blood test every time I have H+P, he only sees me every 9 weeks now and I only need blood test when I see him. I will have H+P till September. The last time I have CBC was in March and WBC is 4200, it is also marginal.
Does anyone have headache because of perjeta? I have some strange headache, Dr says it might because of perjeta. It’s not like the migraine I used to have, it’s more like nerve pain, comes and goes.
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Speaking of SE, does/did any of you have flu-like symptoms after Herceptin? I had the most terrible whole body pain+burning after the last dose, it was day 3.Day 2 I went for a quick uphill hike and the night + day after this was terrible. Is it from Herceptin?
My WBC and all other blood counts are great.
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JaBoo--the worst I've ever felt after Herceptin was almost kinda like I'd been drinking--it was hard to drive home that day, and then super tired (like I took two naps). However, I've always been fine by the next day. And I've posted (here or on another thread) that I got it in my head I didn't have enough protein heading into treatment. My blood counts were really good through Taxol, I believe because I really pushed the protein. The last 3-4 Herceptins I've made a point to have red meat the two nights before, and I feel almost 100% normal afterwards. I don't think what you had (have?) is related to Herceptin.
MACTAZ--I just went and checked my old lab results. My last day of chemo my WBC was 5,000. A week later it was 4,200, but then started to climb. It's been in the 4,400-5,700 range ever since.
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Thanks all, seems most are running on low side. I ended chemo in Dec at 8000 and have dropped down to 4200 last test this week. I will just check with my OC in May. I have surgery in two weeks so just wanted to see how others were doing and if I should follow up with anyone before that. I might follow up with surgical nurse but they weren’t worried when the last test reported 4800
Jaboo, I don’t have flulike symptoms but similar to Inerp the last H&P infusion I came home and went straight to bed as I was exhausted. I felt much better the following day.
Take care all and thanks as always.
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Thanks Ingerp and Mactaz for your replies. I have searched this forum and apparently I am not the only one with these SE.... I found a thread full of ladies with similar Neulasta-like symptoms.... (it's here)
I am also a protein eater... I love mainly eggs, I crave then in fact a few times a week.
Mactaz, good luck with your surgery. Imagine I still have healing issues with my mastectomy scar. It's open and healing by secondary intention 🙄🙄 at least it's not painfull. But I am so over it. well, rant over, sorry
editing to add - maybe my flu-like reaction to Herceptin may have something to do with the open wound I have? no temperature, though
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Jaboo, I can’t imagine still having issues with Initial surgery. I’m so over the TE and looking forward to what will hopefully be my final surgery. I’m wishing the best for you, I believe we were in the same January surgery thread. Take care
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JaBoo - Thanks for the site re: Herceptin and joint aches. I swore Herceptin was partially causing severe joint/bone pain, but my *ss of MO of course said that Herceptin has no SE's/
I envy the ones that had support and a good MO/ Both my MO/BS & Navigator was awful. Terrible experience compared to some of you. Hindsite, I should have shopped around and got a second opinion. But I felt too bad to go thru all the questions and tests again.
Now that I'm on Tamoxifen - I have NEVER been so tired in my life. My eyes are crossing they are so tired. Driving has become dangerous. I locked my keys in the car today. But I have no support. Usually my car knows its way. Hope my luck doesn't run out.
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rljes, well, I now believe Herceptin is causing flu-like symptoms in me. Also my knees are aching and I am wondering if H is to blame. Of course, I am now on Zoladex + Aromasin, so it is hard to say where the painfull knees and also heels are coming from. I have a friend who had severe knee pain on Herceptin while having NO hormonal therapy. She is now almost a year post Herceptin and her knees are painless. This is actually what got me thinking where my "flu" was coming from.
I am sorry you have such a bad experience with your MO!! I am lucky enough to have a very compassionate MO who is behaving like she was a psychologist - she always says the right thing and is not dismissive of my many questions. I ran from my first MO (and from that oncology center) the moment he said "you don't need chemo" and made a few bad jokes, disgusting and unprofessional. Maybe a man 30 years my senior might find those funny, sitting in a pub, but not a young mother 10 minutes after getting her cancer diagnosis. Ugh, I am shivering just writing this.
Mactaz, yes, we were in January surgery group together. It's great you are getting your implant soon. I am sooo tired of dealing with the healing scar for so long.
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nanette7fl ... It is going to take time for your reconstruction to heal and the sensations stop. Every time I felt one, I sent energy to that area for healing. Like Special said, watch the ice. About 2 years after my reconstruction I had dry needling completed by my Physical Therapist where I had some numbing. She gave me some sensation exercises to do and I continue to do those. The numbing / itching has gone. Except for a very small area on the back of my left arm, I have 100% sensation.
Tresjoli2 ... If I am over stepping, just say so and I will delete this post. Here goes: this is your body and you decide how you want it cared for. One thing every doctor should consider is the mental stress of having breast cancer. Frankly, this guy of 15 years appears to me that he is missing the point about YOUR body and YOU. He said to you: "I will have multiple biopsies and episodes over the next few years ... When I told him, the period was unbearable heavy he told me he didn't doubt it.When I asked if we could just remove my ovaries and such, he said no - that he wouldn't do an invasive surgery when I had benign results ... ."
How invasive is "unbearable bleeding" and how invasive to your mind and body will be "multiple biopsies and episodes"?You are a young parent with multiple responsibilities. I think worrying about your female organs would be one responsibility you could get rid of.
My robotic hysterectomy came 30 days after my implant surgery. I went to breakfast with hubby the next morning. I did have lift restrictions and exercise restriction for about 6 weeks.
And finally, when ANYONE says to me "this was simply the way it was going to be," I retort with "as far as you know now". If the Sisters that walked before us accepted those lines, we'd still be without the Breast Reconstruction Act and having our girls cut off and thrown in the trash! We all need our Medical Teams to take the approach "if I could make this work better, how will I" … or at least that is what I want.
One more finally (LOL), pelvic / abdominal pain is the number one symptom of ovarian cancer with vaginal bleeding number three. I am not writing this to raise fear, but I think only a mind reader can be 100% sure that your symptoms are 100% from Tamoxifen. I had pelvic pain and that was the reason my GYN did the hysterectomy. He said it was not worth the chance not to do the surgery. Everything was benign and I did have abnormal growths in two areas. I am probably overly sensitive about this b/c one of dearest friends and an Executive Coach in our business has stage 4 endometrial cancer. Her GYN said last September / October (when her mass was TOO LARGE to biopsy in his office) that these masses are always benign, and she could wait until after Thanksgiving to deal with it. I guess by now you can figure out what I told her.
Welcome back, Moody Blues. I have missed you especially since I am off Facebook for Lent.
Also, I have been reading posts but not responding much. We have filed for conservatorship of my 78 year old Brother. He has dementia and Alzheimer's. He is in hospital and will never return to his home to live on his own. We have made arrangements for assisted living. It's not like sending a child to college in supplying his room. Everything has to be machine washable, simple, not confusing, calming colors, and so forth. I thought breast cancer was bad until I walked this journey. I lost my breasts but got a great rack in the process. He has lost his ability to reason, make decisons, and determine right from wrong ... there is nothing to replace these … only survive with what is left.
Have a great weekend everyone. Stay positive. Stay well.
Vicky
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