TRIPLE POSITIVE GROUP
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How do you get your Dr to prescribe the medical marijuana? I asked for it after round 2 because of the nausea and she said until they have exhausted the pharmaceuticals she sees no reason for it. Maybe I need a different approach.🤔
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I have trouble sleeping, never thought of trying medical marijuana. Marijuana is actually legal here now in IL. It seemed like a big deal at the beginning of 2020, but then this year kind of turned into a train wreck, so I never hear any issues with having a dispensary nearby.
I have a meeting with my oncologist this week before I start Kadcyla and Tamoxifen. I had TCHP, 5 HP only, double mastectomy and axillary node dissection (with residual cancer in breast and nodes) and I'm finishing up 28 rounds of radiation. Moving on to the next phase of Tamoxifen and 14 rounds of Kadcyla. Any advice on questions I should be asking onc before I start this next round of treatment?
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Fab4mom - no advice really but I started Tamoxifen and Kadcyla the same day and they have both been kind to me. I wish you the same!
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I'd be interested in the discussion of weighing Tamoxifen vs ovarian ablation with AI's, which is where my MO is going to push me...so if you haven't had that convo, my understanding is that it's worth having. Best of luck
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AngieB92 - I'm glad to hear it's going well for you, I'm very hopeful for the same for me.
AnnaTheBrave - I did ask my obgyn about ovary removal versus chemical options. My onc hadn't gotten into details to me at my last appointment, she said tamoxifen, and we would monitor to see if I stay in menopause from chemo. If not, she said I would get "shots", so some sort of ovary suppression I'm assuming. My obgyn said there seems to be some data would indicate that surgery is very slightly better than chemical ovary suppression. I'm going to ask for alot more details on what my onc has planned for me and other options for sure. Thanks for the reminder.
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I've been doing Ovulation Suppression -- OS (Zoladex) + Aromasin for over five years. I was premenopausal before chemo, and my ovaries continued to function through AC. I had my last period in September 2014, when I started Taxol + Herceptin + Perjeta. However, when MO tested my hormones after surgery, I was still producing lots of estrogen. Based on the SOFT study, my MO recommended Zoladex + Aromasin because that is a bit more effective than Tamoxifen. My OB/GYN would have been willing to remove my ovaries if I'd insisted on it. However, he noted studies which show that women who keep their ovaries live longer than women who don't.
Right now, I'm slated for seven years of OS + Aromasin, so we'll see what happens. For me, this regimen is tolerable, though not everyone who's done it can say the same.
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My MO didn't want to do Lupron+AI and Kadcyla. So we're doing Tamoxifen for now and will reevaluate in May. I'm doing real well on Tamoxifen so I kind of dread switching to an AI but, I believe the numbers are better.
My eventual goal is to remove all the plumbing as there's been both Uterine and Ovarian cancer in my family. Not sure it's worth the risk especially when an oophorectomy has it's own benefits
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Good Morning! New to the group...(Not so happy to be on this pink t-shirt team, but here we are. Happy October to you all).
Back story: dense breasts, weird mamo in August 2020/ stereotactic biopsy 8/26, diagnosis of IDC 8/27 in right boob, MRI biopsy 9/9 of left boob confirmed DCIS 9/10, Double MX 9/22. Oh, and I turned 40 during this super fun time. I have one child, a little boy who turns 4 in October.
Had my double mastectomy on 9/22 with tissue expanders (healing well, very sore, trying to keep spirits up...off the strong pain meds. I'm brca2+ and triple positive (ER+, Pr+, HER+). The masses they found were larger than originally thought (was supposed to be 1cm IDC in right, was almost 3cm and 2 other masses: 2cm DCIS in left. Almost 10cm of cancer in both boobs). Ended up being skin saving/ but not nipple sparing. Clear lymph nodes (sentinel node biopsy).
I meet with oncology next week- should I be emotionally preparing for chemo? Or is there a possibility I will be able to skip medical treatment? Thank you.
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You will need Chemo of some kind. I did 6 rounds of TCHP. I know Chemo is scary (I was terrified) but, it is doable. I handled it well and the SEs i did have were managed via meds.
I would have continued the HP (Herceptin/Perjeta) for 12 more rounds but they found residual disease after surgery (I did Chemo first) so I was moved to Kadcyla for 14 Cycles. Kadcyla is treating me very well which is comforting because it's 10 months of Herceptin bonded to a Chemo Drug.
If you're worried about your hair you can Cold Cap but, there are pros/cons to cold capping that go beyond the cost. It also depends on the treatment you do, cold capping works well with TC (Taxotere/Carboplatin) but, not AC (Adriamycin/Cyclophosphamide).
Please check back and let us know what you and your MO decide. Sorry you had to join our little group, it's very scary but you're stronger than you know. ❤
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Thank you so much. I want to prepare emotionally...but I am not even sure that is a thing. Prior to this, I was a very healthy 39yr old person. I worked out regularly, finally lost the baby weight, was feeling strong and finally comfortable in my skin. This has upended all of that. I am terrified of what chemo/ med treatment will do to my body. I can't imagine not being able to "do". I am one of those people who is almost always moving - very efficient, very "capable". This is taking an emotional toll that I was not anticipating.
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Hi Eucalyptia
So sorry you are here.
I was 47 when diagnosed, very strong, active, athletic, always on the move, uber-capable. I want to tell you that you will get through this, and, from a physical standpoint, it will likely all be very temporary. Think of a pregnancy. A temporary slow down that lasts months, not years, then you go back to normal. And, same as with pregnancy, you will go through chemo as the person you are. If you are active, you will be active (within temporary constraints) during chemo. You will enjoy your kid. Not sure if you work and what kind of work, but I was able to work all through chemo. I kept swimming, I kept jogging, then moved to walking, then slowly back to jogging. I didn't care about losing my hair, and in a way it was a relief not to care about coloring or blow drying it for a winter. Now I wear it short and I love it...who wants long hair? I am now about to turn 51 and I am pretty much as strong as before if not stronger. I certainly look better, after shedding a few pounds during treatment. I have some side effects from hormone treatment, some lingering little bothers from radiation and chemo but none of that has altered the person I am or turned me into a couch potato or an incapacitated version of my prior self.
I took time off after surgery to take the time to do my physical therapy and work on recovering range of motion, to me surgery was way more incapacitating than chemo. Take care of yourself
You can do this!
LaughingGull
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eucalyptia - what laughing gull said. I am sorry you are facing this at 39, I was 54 at diagnosis, but like you a capable and busy person, a military spouse. My husband was/is in a job that means he is gone for periods of time and a "regular" work day is a minimum of 12 hours plus a commute. He was not in a situation to take a lot of time off and we do not have family near us. I went into chemo after five surgeries in a short span so I was tired, but still managed to get everything done I needed to. You arrange your life around the days you might not feel 100%, put your head down and your shoulder into it, and take those steps forward, then you are on the other side of it. I have had no permanent issues from chemo, and celebrate this week that I am 10 years out. You can do this - we are here for you.
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LaughingGullSpecialK Thank you so much. This community is amazing- I am so appreciative to have found a group who can relate. :-)
Thanks and I will keep you posted.
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Welcome Eucalyptia, there are some great supports here and I’m happy you’ve found us. I made it through TCHP, radiation and am now halfway through HP and started OS/AI. It’s not a pretty road, but I’ve made it through okay with manageable side effects thus far. Hoping similar for you. There are some wonderful people that are wealths of knowledge on these boards!
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Eucalyptia- so sorry you are here but you are not alone!!!
“..put your head down and your shoulder into it, and take those steps forward, then you are on the other side of it.“
SpecialK is spot on in her quote above!! You can do this!
I had 6 rounds of TCHP before surgery and am currently three treatments away from finishing Kadcyla. I have been on Tamoxifen since April. It’s all good. I believe I am even more active now than I was before.
You absolutely can do this!! ❤️
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Glad to see a post that talks about a positive outcome. I’ve done 5 rounds and was starting to feel a bit depressed. I have GI issues (Gastroparesis and GERD) that seem to contribute some of my side effects.
Thanks for the positivity.
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Hello everyone,
I dont post very often because I stay up to date with you all on my phone reading the posts from this feed. I am going to be starting a NEW drug that has only been approved 3 months ago and I will be the first patient that my Dr is putting on it. The Kadcyla treatment I just finished in July didnt work and I have been inundated with cellular activity in multiple places on my body. It was a shock to us and to him that the Kadcyla either didnt work or just kept everything at bay until it was out of my system and then burst on the scene like confetti. I dont know the name of the drug yet so I cant do any research. Will let you all know as soon as I can.
Blessings
Angelsgal
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angelsgal - that is an unusual situation - normally with developed resistance the drug just stops working, it's interesting that Kadcyla appears to offer some measure of control for you, but only for a period. I'm sorry it didn't work as well as anticipated. Is the new drug Tukysa (tucatanib) that your MO Is looking at?
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Nsbrown - Keep your head up and spirits lifted! What you are experiencing is most likely temporary and will end when you finish treatment.
I am thankful for the women on here who post the not so good parts of their treatment so that I was given a heads up that if I experienced the same, it wasn’t unusual.
I try to let people know that my experiences with TCHP, Tamoxifen, and Kadcyla have not be as bad asI imagined. I ordered so much stuff in preparation for the worst and ended up giving 3/4 of it away to a local cancer center.
Taking care of yourself and listening to your body is key. Drinking lots of water and getting fresh air and exercise is also vital to helping you get past treatment time and start living Act 2 of your life.
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angelsgal,
I'm sorry to hear that Kadcyla wasn't a long-term treatment for you. However, it's good to hear that you have another treatment to try! Hope it does the trick for you -- ((Hugs))
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Thank you for your support.
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angelsgal - I’m so sorry to hear the Kadcyla didn’t work, but really glad there is something else to try. Best of luck to you.
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Thanks for the encouraging words. The PET scan last Friday showed along with the Kadcyla not being effective the second time around that I have a fractured femur which is considered a hip fracture. I have been walking in pain on it for 2 months thinking it was a pulled psoas muscle and the PET scan showed a fracture.
There is no official treatment for it but rest and at this point the pain has decreased significantly so it is healing on its own. The injury occured the end of July when we were on a mini trip for our 23 anniversary and I stepped of a curb wrong. I was also dealing with Plantar Faciatis in my foot and though I didnt fall I did catch myself wrong which started the leg pain along with my arch/heel pain. I have been a mess ever since.
I am going crazy waiting for the approvals to go through on the treatment and radiation that is now needed. I want to start NOW and get these cells taken care of before they can team up and create a mass or tumor somewhere.
Prayers appreciated my faithful battlemaids!
Angelsgal
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AngelsGal - did you have a recurrence or a new primary?
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Eucalyptia -
Just chiming in with what others have said - you can get through this. I have 5 kids - two still at home and one in college nearby, so he's home a lot also. I was diagnosed in March, started chemo in April, finished that in July and had a BMX, no recon in August. I'm 6 weeks post surgery as of yesterday, and mostly feeling pretty normal now. Because the standard chemo for TPBC is every 3 weeks, it actually allowed me to bounce back between treatments. The 3rd week, I always felt mostly normal. I did a lot of things to support my body through all of it - including working with a naturopath on supplements and diet to get me through. It all worked, and I had minimal, manageable side effects. The fatigue the first week was the hardest, but even with that I was able to keep working (from home) and taking care of my family. My husband and the kids were huge helps also. I know you have a little one, but hopefully you've got friends and family that can pitch in where needed. I don't have extended family close, but our community of friends has been awesome through all of this. As lots of people have said, that targeted treatment for our kind of cancer is a miracle. It truly is. TCHP destroyed over 99% of my cancer before surgery, and surgery got the rest. I'm currently NED. Even though I wasn't 100% after surgery, I had so little left that they considered it 100% and I did not get switched to Kadcyla. Although there is always a risk of recurrence, my prognosis is very good and I'm holding onto that and doing everything I need to do to help my body keep this cancer away. This community is so knowledgeable and helpful - definitely keep asking questions!
Kris
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Morrigan_2575,
The second round of Kadcyla wasnt effective and the cancer has spread like confetti to multiple sites in my body so my dr is putting me on ENHERTU which has just come out in the last 3 months. I am hoping and praying that my insurance is going to cover it.
AngelsGal
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Thank you so much.
I go to the oncologist today (for the first time) and I am legitimately freaking out. I'm exactly 2 weeks post DMX. I am still so sore and dealing with the "healing". Emotions are all over the place. My lymph nodes were clear, which is great, but the triple positive diagnosis is less than. My doctors were smart in that they've told me I should wait to review the complete pathology with the oncologist (vs just giving me the results and allowing me to consult dr. google) so I am going into this pretty blind.
Yesterday was not a great day pain wise - today does feel better. My diagnosis to surgery timeline was FAST so I feel generally unprepared for EVERYTHING. I didn't have time to think, research, process etc. I am only now catching up on what is considered "normal" in post surgery healing (which is pretty across the board...i know, everyone has a different experience), but I just sort of feel a bit lost.
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Eucalyptia-
Just checking in with you to see how your Oncology appointment went.
Kris
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Hi everyone. It’s been a long time since I have followed the board regularly. Today, I have been feeling grateful remembering that I am getting close to the 4 year mark since diagnosis. And moreover thankful for all the support I received here. I will have to catch up on the latest.
angelsgal57, sending virtual hugs and hoping that your treatment gets approved and you are on a path to recovery.
Insomnia always reminds me of those months of steroids staying up late to research.
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Hi Suburbs!
Nice to hear from you. I hope you're doing well. I've made it past 5 years on Zoladex + Aromasin. Only two more years to go (I think).
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