TRIPLE POSITIVE GROUP

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.

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!

WC3 thank you for the laugh. I go looking for my glasses which are already on my face

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.

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)

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!

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)

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

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!

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

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.

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.

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.

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

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.