Starting chemo February 2020
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Yay Morrigan!!! Congrats! What a long road. So happy for you!
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@Scattered Energy - I'm still on Tamoxifen and will be on AI or Tamoxifen for 10 years. However, I'm finally done with infusions/Chemo every 3 weeks.
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Ah okay. Congrats again. I still don't know how long I'll be on Zometa infusions. I'm glad they are every six months only.
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ScatteredEnergy- thats a lot of hair!! It looks great.
AJminn - I feel you with the scanxiety. I went for a jog outside a few weeks ago and I had so much hip pain for about two weeks. I told my onc, and she said we could scan it, but it’s probably just from my run. She suggested take a steady course of Advil for about a week and see if the hip felt better. Sure enough, it went back to normal. Every little twinge feels like it could be cancer or some horrible side effects.
Mmorigan- congrats on finishing Kadcyla, that’s so awesome. Good things ahead for us!
I have my 11th Kadcyla tomorrow. I’m scheduled to continue on through the end of June for a total of 14. But, my insurance precertification expires at the end of May. So I’m waiting for my doctors and insurance to hash it out. I won’t be surprised if they cut me off for the last two. I would be disappointed and relieved I think. Tomorrow will be my 22nd Herceptin based infusion, so we certainly have been aggressive.
I went for my annual physical with my primary and all was well. I told her I gained 8-10lbs when I started tamoxifen and she told me to try and lose it, lol. My friends are so kind and tell me to relax about a little weight, but that last pound I gained officially pushed me over into “overweight” territory based on BMI. Also, my clothes aren’t fitting well, and that is the worst feeling.On top of that, I did blood work and my cholesterol is through the roof. Last year I was almost low, this year I am up more than 100 points. What?!? I’m waiting to hear from doc and doing my google searches to figure out if it could be from Kadcyla or tamoxifen. Either way, I have kicked my healthy eating up big time. It’s frustrating, because I think overall I’m pretty good already.
I went for a haircut last week! I had a total mullet going and it was insane crazy. Thestylist had to take an inch off the back, and shaped the sides a tiny bit, to give the top time to grow out and catch up. It looks better, but it was hard to let her cut any.
Super quiet on the board because hopefully everyone is getting on with regular life after cancer and Covid. Thankful for that!
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Has anyone been prescribed Verzenio? My Oncologist is recommending it and I don't know if I want to take it. All the side effects are really worrying me.
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did he say why he wanted you to take it?
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Because of what the monarchE study shows. But I was reading the study and these people have only been studied for two years. She wants me to take it for 10. For 10 years I am going to be running to the ER everytime I get a temp. or yellowing of the skin, or breathing issues, bruises, etc.; per her instructions.
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That's a hard one. Have you talked to a different oncologist? Nothing wrong with getting a second opinion.
If it was me, I'd probably give it a try, you never know you might not have severe SEs. However, you have to choose what's best for yourself.
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No. I have not looked for a 2nd opinion yet. I was waiting to see if my insurance approved it. It is so hard. Is what I told her, I might not die from cancer but I might die from all these meds.
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Fab4mom- Hopefully you can get those final treatments, but like you said...there might be some relief on getting cut off slightly sooner than that. I've gained weight and feel similar. My doctors just seem to brush it off and tell me not to focus on it. I'd really like them to (maybe) “shame" me a little to give me a kick in the pants. I am eating generally healthy and I do peloton and exercise quite a bit, but I'm not seeing much in terms of weight loss results. My endurance has increased a bit though! I should also get a haircut. I'm in full blown mullet status...I kind of want to make it to rat tail status...get back to my 80's roots.
Scattered- I'd get a second opinion. There is certainly a balance between treatment/ doing everything to keep the cancer away and living a decent quality of life. I think if possible it would be worth a second opinion and if nothing else, giving the meds a go and if the SE's are too much, then stopping. It's all so much to take in and decide what to do.
I hope everyone is well. I agree with Fab4mom, the board has been quiet but hopefully that means everyone is getting back to “regular" life!
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ScatteredEnergy- why does the doctor want you to take it? I am the type to take as much as I can, but I am realizing these side effects are no joke. I guess I would ask to break down the recurrence rates with and without. If it seemed beneficial, I would probably try it. If it makes you miserable, you could always stop.
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I am just scared of dying from this med. The doctor told me all the risks and then yesterday I get a call from the pharmacist telling me all the risks and instructions. Which has never happened before. A pharmacist has never called me.
- If I get bruises all of the sudden I need to run to the ER.
- If I cough, dry or not, show any signs of trouble breathing, I need to run to the ER.
- If I get a temp. I need to run to the ER.
- If my skin/eyes get yellow or my pee changes color, I need to run to the ER.
- Any sign, I need to run to the ER.
This means Covid tests every time, which I hate. This means living in fear of catching anything from others for ten years. It means risking losing my hair and going back to being fatigued. I guess I will continue reading and make a decision once isnurance says they approve it since it is not FDA approved yet.
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Sorry to butt in here but - this seems excessive. Verzenio has been used in the mBC setting predominately but its really expensive (we are talking > $10K a month before insurance kicks in) and won't be going to generic any time soon. Lot of GI issues typically with this one as a side effect, though I haven't seen a lot of ladies in the Stage IV area running to the ER.
Did you have a high recurrence risk profile or Ki-67 that she is suggesting this? Also, it looks like its only 2 years on Verzenio total and then 5 to 10 years after on standard endocrine therapy.
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No problem, butt in all the way. I meet three of the four risk profiles. And if my insurance does not cover it I am not paying for it lol
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I had my 3 week follow up, my blood count is still lower than normal but, he expects I'll rebound in a few weeks. He wants to check my blood again in 4 weeks just to make sure it's coming back.
I'm going to stay on Tamoxifen for 6 months and then he'll check to see if I'm in Menopause for real or if it was Chemopause. If I'm in Menopause he will keep me on Tamoxifen for 1 more years before moving to AI. He also said that there's a test they'll do in a year (I think) that will determine if I'm short or long term on Hormone treatments (Tamoxifen of AI).
I asked if he can run a test to see how well my body absorbs Tamoxifen. I heard from people know Facebook that their Doctor did that and used it to determine treatment. He said they don't normally run that test but, he looked it up for me and added it for my next bloodwork.
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Morrigan- very interesting. I haven’t heard of the test that measures how your body absorbs tamoxifen. How does it feel to be 3 weeks out? Hopefully you’re feeling okay overall.
how is everyone else doing??
This board has been quiet, but I hope that means everyone is well!
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@ajminn - i actually feel really good. I have a lot more energy. I don't think the panic has set in yet because I'm in that vaccine trial so I'm still getting treatment (of some kind). I have 1 more injection left (5/25) and then I will go back for boosters at 6, 9 and 12 months.
I'm starting to go out more, although I still pick low traffic times (very early in the morning). I was given the OK to go back to the gym...yay!
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mmorigan- so great your energy is back up. Mine is way down after Kadcyla 11. This one hit me harder. I can’t believe you are almost through the busy part of the vaccine trial, time is flying. Except for me to get to the end of Kadcyla 😂😂, that’s draggin.
I hadn’t heard of the test to see how tamoxifen absorbs in you. That’s interesting. There seems to be so much variation in the way oncologists approach hormone blockers. My doctor thinks my menopause is permanent, but she put in the order to insurance for the Lipton shots, just in case. She wants me to switch to an AI as soon as I finish Kadcyla. If I’m not in menopause, then I’ll get the shots every three months too.
Mmorigan- I’m going out like normal now, I just can’t stay in. I’m vaccinated and my white blood cell counts are always fine. The only numbers that are low for me are platelets. Everywhere around here still requires masks inside, so I feel very safe. I go to my barre studio, shopping etc. Hubby and I had our first date night in a restaurant since late 2019 I think! It feels really nice.
I’m just struggling to make it through these last two months. I know I ended up on this crazy long plan before of the spacing of my surgeries and radiation and the need for Kadcyla, but I am so tired of it all. I would like to try to get back to normal life, but I still can’t schedule much because I have these treatments and then at some point reconstruction. It’s taking forever.
I did submit the HIPPA release to get into the vaccine trial. So soon I’ll add that to my to do. I’m really hoping that by fall, all the active stuff, surgeries, vaccine trials are finally done and it’s just follow ups.
Otherwise I’m good. I have a frozen shoulder thanks to surgery and radiation, but I’m making progress on getting my range of motion back and it’s not very painful anymore.
Anyone got any fun post cancer and Covid plans this summer?
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Well, we are getting married on 5/27. We are also buying kayaks to enjoy this summer before it is over.
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woohoo! Congratulations!
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Scattered- CONGRATS! Very exciting
Morrigan- glad to hear you are doing well overall. It feels good to start going out more.
Fab4mom- I’m sorry it feels never ending. I think I’m going to have to visit my plastic surgeon for some revisions on my radiated side. I’m fairly sure I’ve got some capsular contracture. Other than that, we have a lot of camping trips planned for the summer as well as a lot of sports/activities for the boys just about every night of the week. I’ll be mostly off of work (teacher) with some tutoring and curriculum writing hours.
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"She wants me to switch to an AI as soon as I finish Kadcyla. If I'm not in menopause, then I'll get the shots every three months too."
@Fab4Mom - I see a lot of MOs starting people on Lurpon+AI immediately. It's one of the reasons why I brought it up because I've been on Tamoxifen since September 2020.
For some reason my MO doesn't think I need to be on AIs immediately. I don't know why. I handle Tamoxifen well, so I'm happy about staying on it for another year but, I have seen the studies that show AI is slightly better for risk reccurence reduction
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I'm doing good. Feeling mostly back to normal except joints and I still feel like my face looks horrible/old. And the hair is crazy stupid, but I know that is just a matter of time. I mean to (but don't) take collagen and I think I'll make an appt with a dermatologist for the skin cracks I've got and maybe they'll have some kind of wonder cream.
Since I have no hormone aspect, my last treatment was on 2/10. I had to decide whether to go on Nerlynx for the HER2+ aspect - but neither my onc or I felt strongly it would do anything (except give me diarrhea for another year) so I decided not to. It was a hard decision - to turn down anything that might keep cancer away. I wish she hadn't even offered it. But I think she did knowing that we can feel unsafe when out of treatment and with no hormone+, there's nothing to give me to help keep a recurrence away. And no real boobs means no scans planned for the foreseeable future. So I'm trying to look at the "we have nothing else to give you" as a benefit rather than a downside. I'm on a multivitamin and Vitamin D and that's it. Oh, and the collagen I intend to take every day but don't.
How are your eyelashes? I never had awesome ones, but mine are real stubby. I don't even think I could put mascara on them. I think this is contributing to why I feel like I look terrible.
Have yet to get my port out (just not wanting to go into hospital for anything, really) and still thinking about having more fat grafting to try and fix the ripples.
Congrats on the wedding! And summer vacation. We are heading to Disney first week of June. Kids have no idea.
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Disney, how nice. I have not been there in years. It has gotten to expensive lol
My eyelashes are back. I did do microblading on my eyebrows and I'm loving it. They are healing so nicely. The first pic is my before, the middle one is when she finished, and the last one is today at 12 days. I have to go next month for the touch up. Highly recommend.
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"mean to (but don't) take collagen"
My cousin is taking this (not cancer related just age), in told her I'd ask my MO when I see him next month. I take Biotin right now but, I don't know if one is better than the other or if I can take both at the same time.
Today was my first day back in the gym, I've been really worried about going because of COVID and my Labs but, doctor said it was safe now since I'm fully vaccinated and my Blood Counts were on the rise.
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Micd- yay for Disney! I love that it’s a surprise. We’d love to take our boys sometime...we said once ALL of my hair fits into a pony and the youngest is potty trained we would go. We are hoping for next Spring and want to make it a surprise trip. I hear you on the Nerlynx. My MO did not see it as a benefit to me and therefore did not recommend it but we discussed it. I am on OS/AI so I’m hoping that’ll keep it away. I also will have no regular scans other than a bi-yearly MRI to check the integrity of my implants.
Scattered- I love the brows! My brows stayed for the most part through treatment. My eyelashes are still struggling and crappy. I never had lucious lashes but they def not the same.
Morrigan- glad you got the okay to go back to the gym, but I can understand your concerns. I will say, getting regular exercise has improved my mood so much over the last few months. I may not be losing weight (at all) but I feel better mentally and I am definitely getting stronger.
On another note, I finally get to go get my tattoo tomorrow! I am getting a walleye on the top of my foot (in honor/memory of my dad) and my boys names in their handwriting on my arm (except my youngest...have to wait until he’s older and can write semi legibly!)
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micd - what a happy surprise. We did Disney summer 2019, and I am so happy we did, before I got sick and a Covid and everything. It’s such a happy place.
ScatteredEnergy- congrats on the upcoming wedding, and your eyebrows look great! Mine are thinner now than during my heavy chemo. I have started filling them in most days, but I might have to look into micro blading. My hubby doesn’t want me to, but I hate my patchy thin brows.
Mmorigan - if you are doing well on tamoxifen, and your doctor is happy, I say stick with it. I’m a little afraid of the AI’s, sounds like joint pain and side effects are typically worse. And yay for the gym, I’m an exercise nut, it boosts my mood so much.
Ajminn - I hear you on how exercise makes you feel stronger and healthier, despite weight loss. I have been tracking my diet and exercise hoping to drop these pesky 10-12 lbs I gained and the scale does not budge. I swear, this would have melted off pre-cancer. But I feel better and my energy is better, so I’m trying to accept it. Not give up, but also be ok with it. And buy some slightly bigger summer clothes, lol. Please post pictures of the tattoos. I have never gotten one, but nowadays, anything is possible.
I’m off to Kadcyla 12 tomorrow. I felt extra fatigue this time, but I think I may have been fighting off a cold virus. My 8yo twins both came down with sneezing, low fevers, sore throat this weekend. They tested negative for strep and covid, so doc says just a regular virus. Last week I was sneezing way more than normal and just tired. That was it though, so I can’t complain. Looking forward to summer like temps this week and just trying to push through to June 30 when I’m finally done
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SE - that looks good. I had head "microblading" before but had no idea what it was. Just googled it and read up. I like the way your darker brows look with your hair color.
Fab4mom, I hear yah on the weight loss. It seems impossible. I lost 15 on chemo and have almost gained it all back despite eating decently and exercising 4+ hours a week. I went 3 weeks tracking and limiting my calories and exercised like crazy and g-damn if I didn't gain 3 pounds. And it can't all be new muscle.
My kids were sick with same thing recently - low fever + sore throat and then lots of coughing. But both tested negative for COVID. Strep is going around here too. Two older ones got their first vaccine dose yesterday.
I find myself tracking everything like crazy. I use Strides app on my phone and track exercise hours, weight, bmi, water drinking, # fruit/veg eaten, etc. Since there is no preventative medicine for me, I really want to reduce the other risk factors that I can control. I'm determined to get my bmi down to a lower level. I feel like if I can do that and eat mostly healthy I can lighten up on the alcohol restrictions I impose on myself.
What's this vaccine trail? Is it only for certain types of breast cancer?
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"What's this vaccine trail? Is it only for certain types of breast cancer?"
It's to prevent HER2+ recurrence if you're interested.
https://www.clinicaltrials.gov/ct2/show/NCT0338491...
No idea if it will work but, every little thing helps.
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Interesting. It's encouraging to see so many cancer vaccine trials. I had no residual cancer so it looks like that rules me out as a candidate. But I'll ask my MO when I see her next.
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