How long have you been Stage IV?
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@livinglifenow Hi Pam! Yes, we r the same age! However, my next bday seems to be roaring up fast in early April. Since I missed out on a fun 60th celebration due to the pandemic, my plan was to celebrate big for my 65th. Can’t dance the night away right now…. Will optimistically plan a summer celebration when I pray I can. 🤞🙏
As expected, my friend (college roommate) took the news as well as can be expected. I am lucky in that my closest friends (I call them my army) all live pretty close by. A few go south for the winter but we stay in close touch - especially this winter due to my recent DX. (BTW, same with the lunches! Nice 🤜)
I did tell a couple of friend groups that I see practically weekly (book club, canasta groups, gym) all at once but since I have had this lingering illness/cough for past 2 months, they all knew something was up - just like me though, no one expected the news to be what it is.
Current status: still waiting on Ibrance approval, looks like it will be another week or so before I can start it. On letrozole for 2 weeks - fatigue seems to be my biggest issue but can’t point to drug impact only due to lungs not being up to par rn. Bone biopsy on left hip this Tues.Hope all are looking forward to a nice comfortable week’s end!
All my best, juliana2 -
@EddieJ Juliana, Of course my 60th was also in 2020. Had plans to go to Vegas and see a bunch of show and eat at lots of great restaurants. That, of course, did not happen. Quiet day at home instead. Don't have any plans yet for my 65th, since it's not until November. Other than starting Medicare!!
Glad your college roommate took the news well. And also glad you have many friends close by. I do have a neighbor who had a serious time with a very rare cancer 20 years ago. She is my go-to when I need to talk because she definitely understands what I am going through. Another neighbor and close friend is a former nurse who had ovarian cancer 12 years ago, so she is also a good listener.
Now that I have a regular treatment plan (H&P every three weeks with labs, doctor's appt, etc), I have decided to have one week (or a few days that one week) that I focus on cancer, and the other two that I try to live life as normally as possible.
It sounds like you are still waiting on a specific plan. I will keep you in my thoughts and prayers to have a good plan moving forward. Best wishes for some improved energy levels.
Hope everyone else is having a good week!
Hugs, Pam
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@ssales13 How are you doing? I was wondering if you'd gotten the results of your bone biopsy yet. Thinking of you.
Hugs, Pam 💗
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@livinglifenow Hi I actually just got the results from my chart today but haven’t spoke to the mo yet. So it says idc Er + 90% Pr + 1% and hers 2./ neu 2+. It’s a little different than the breast tumor which was Er + 90% Pr + 70% and hers 2 negative so not sure what to make of that yet. Idk if it’s good or bad. Thank you for thinking of me. I hope you are having a nice evening!
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@ssales13 Thanks for the update. I have heard that different tumors can have different pathological findings. Strange, but true. As you can see by my signature, my original tumor (15 years ago in left breast) was ER & PR positive and HER2 negative. The tumor biopsied last June in my bone was ER & PR positive, but HER2 positive 3! I believe the biggest factor is treatment options. Fingers crossed for all things that kick the cancer to the curb! Thinking of you!
Have a great weekend!
Hugs, Pam 💗
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Hi all! thanks for this discussion info regarding bone biopsy - mine is next Tues. @ssales13 hope the results do not change any positive news or working treatments! @livinglifenow good to know there can be differences that don’t necessarily mean something bad.
Happy Friday all!
juliana2 -
@livinglifenow Did your hers 2 + mean more treatment options for you? I hope so. I’m so thankful that I have you ladies to talk to. I really appreciate you all.
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@ssales13 Good afternoon! We are having such lovely weather I was outside for a good part of the day! Now, I'd like to answer your question as best I can regarding HER2+. The interesting thing is that, a little over 20+ years ago, there was no good treatment for HER2+. Very sad. However, since then they have come up with a very good treatment—Herceptin (also known as trastuzumab)—that is quite effective. In addition to Herceptin there is another drug—Perjeta (also known as pertuzumab)—that, several years ago, has been added to the Herceptin treatment to add an extra punch. The combination of these two drugs, given as an IV infusion, is often referred to as HP Protocol. I have just finished my 6th HP treatment (given every 3 weeks) and have had very few side effects. Of course, all of us have unique qualities to our cancer treatments, so it will be interesting to see what plan you have going forward. Keep us posted and if I can be of any assistance, please ask. All of us here at BCO wish everyone the smoothest treatment possible!
@EddieJ Juliana, I sure remember all the imaging tests, biopsy, and appointments just over 6 months ago. It's a very crazy and stressful time. As I've said before, once a treatment plan is in place, life gets a bit more normal. Don't feel bad about asking LOTS of questions of your care team. That's what they are there for. Good luck on your bone biopsy. I will be thinking of you and sending those good vibes your way on Tuesday!
Hugs to you both, Pam 💗
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@livinglifenow thank you for explaining that to me! I’ve heard a lot of people on here who are taking the herceptin and perjeta are doing well on them. I hope you continue to do well on them as well. I will update you after I see the mo. I don’t see her until the middle of February. Hugs to you too, Stacey
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@livinglifenow Pam I’m doing well on it. I’ve been taking it now for 3 weeks and I don’t notice any side effects other than I’m tired but I was tired a lot before the anastrozole. I’m glad you are feeling better on it now. I go back to the mo at the end of this month and will find out then when I’m supposed to start the kisqali or if she is going to put me on something else. I hope you have a wonderful evening.
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@livinglifenow @ssales13 and others-Hi! My bone biopsy was easy peasy, other than taking a 5 hr nap the afternoon after it, I really don’t have any issues. Now just waiting for results.
I did learn that my ins denied me Ibrance so my mo is trying to get me on Kisqali now. I started Letrozole 3 weeks ago. I also signed up for Mcare and supp plan effective 4/1 - nice $500 drop in my monthly premium! Silver lining for turning 65 😂 Hope Side effects from K are manageable! Stacey, let’s keep in touch re:Kisqali if you are put on it.
With you all mentioning fatigue, Im there too... I actually feel asleep in my chair leaning on DH while waiting to be called in for a blood draw on Monday! I also have hot flashes and am just beginning to have issues sleeping all night. Feels like I am going thru menopause again - but, believe it or not, less crying… PHEW!! Having my lungs involved just adds to the fun - hope the added med helps my lung issues calm down 🤞🤞🤞 Would love to get this PleurX removed! I know it can be so much worse so feel thankful at same time.It snowed and iced here last night so it’s an indoor day. Going to go though my clothes - I lost 30 lbs this past year (semaglutide and lots of gym and pickle ball) so I will be strong and get rid of anything I haven’t worn in last year or 2 and put my favorite big clothes into storage hoping to never fit in them again. Party city here!
Have a nice comfortable day all 🤗 juliana
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@EddieJ Juliana glad your bone biopsy went well! Yes let’s definitely keep in touch! I hope the kisqali has minimal side effects. It’s icy and rainy today for me as well. I need to go through my clothes and get rid of some things that I don’t wear or don’t fit anymore. I hope you have a great day
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@livinglifenow Pam thinking of you too! Hope you have a good week as well!
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I just find the whole thing so strange. This week I have been given a back brace and a pair of crutches (bone mets) and everything just feels so surreal. I am incredibly lucky to have supportive friends, picking me up from various scans and taking me out for lovely food and drink, but it is still almost impossible to comprehend. This bizarre thing happening to my body that has next to no relation to how I think, work, behave.
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@emiliamarty , so sorry to hear that you are encumbered with a back brace and crutches. But glad you have wonderful friends that are helping you. Sending virtual hugs!
Pam 💗
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@emiliamarty im sorry your having to use crutches and a back brace! Hugs to you.
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@livinglifenow Hi Pam! Hope you have a nice weekend!
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@ssales13 Stacey, wishing you a great weekend as well. My DH and I are busy with home repairs this week. Always a good time. 😉 But, so nice when everything is back in order.
Hugs, Pam 💗
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@livinglifenow Pam well hopefully your house is back in order quickly! Tomorrow is supposed to be icy and rainy so a perfect day for me to get stuff done around my house as well!😀 Take care. Talk to you soon!
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Many thanks, Stacey and Pam!
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Hey, @ssales13 Stacey and @emiliamarty and @EddieJ Juliana. I forgot to mention that a really good source of information on breast cancer is a YouTube channel. Just go to YouTube and type in "Dr Jennifer Griggs." She has hundreds of videos on all aspects of breast cancer, treatments, etc. I watched a bunch of those when I was first diagnosed. It really helped me formulate questions for my medical team, as well. Just FYI in case you haven't come across her channel yet.
Hugs, Pam 💗
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Hi all! @emiliamarty i have to let you know that your note reflected my inner thoughts exactly! I am right there with you, my new friend!! I feel like I’m in a twilight zone episode and it isn’t ending. I am so sorry to hear about your brace and crutches. I suspect that is my future too - I have “innumerable bone Mets” on my spine and hip and shoulder bones. Right now, the only pain I have is sciatica down my left leg which I initially thought was due to me sitting cross legged too much on soft surfaces (I.e. bed 😁) but now realize it probably stems from the Mets on my lumbar spine area. I have a spinal mri scheduled this coming week so will know more soon enough. Scared but it is better knowing than not. @livinglifenow hi Pam! Thanks for the YouTube channel recommendation. I’ve learned I can only do deep dive research be it into scientific info or even this wonderful BCO community when I feel really strong mentally. Otherwise, I find I get scared and go down the bad rabbit hole. I am keeping a file with links and info that are or will be helpful that I know I will turn to when necessary. @ssales13 Hi Stacey - still awaiting approval on the Kisqali - really hoping I can start this med this week! I may be scared of the SE but the upside if the med works is def worth it.
Hope everyone has a great Super Bowl Sunday! I really don’t care about the teams and pray no one gets hurt while playing (so happy my DS did not play football!) but looking forward to hanging with our friends!
Ciao for now! juliana1 -
Good luck with the MRI Juliana! I had a cervical MRI this morning. Who does that on a Sunday? Argh.
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Hi @EddieJ I hope you get to start the kisqali soon too. Please let me know how you do on it. I’m waiting to see my mo in 2 weeks to see if my plan changed medication wise. If not then I will be waiting for approval also.
@emiliamarty I understand. I’m newly diagnosed as well.
@livinglifenow thank you for the YouTube info I will check it out. I hope you all have a great Sunday
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Good afternoon, @EddieJ (Juliana), @emiliamarty, and @ssales13 (Stacey), just checking in to see how everyone's week is going. We've had some cold weather come through this week, so not too much outdoor activity. To think only 10 days ago we were golfing! Except for taking anastrozole, nothing new on my cancer journey. I do have another HP infusion next Tuesday. Hope that I continue to have very few side effects.
I did have a lovely massage this morning, my favorite treat! I also started attending the Wednesday MBC Zoom meeting through BCO. What a wonderful group of ladies; so that is on my agenda today, as well. And, following that, I see my PCP to update him on what is going on with me and my treatment. (I think we will have take-out tonight!) 😋
@emiliamarty, any news yet on your Sunday MRI? How are you doing with the back brace and crutches? Hope life is smoothing out a bit for you.
@EddieJ Juliana, best of luck with your spinal MRI. Information is power!
@ssales13 Stacey, hoping that your weather has improved. I know you have a bit of a wait until more decisions are made. Sending hugs and pleasant thoughts your way!
Wishing all of you a great week!
Hugs, Pam 💗
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@livinglifenow Pam, I hope your infusion goes well next week not much is going on in my cancer journey as well. It snowed 5 inches here last night so I didn’t get too much accomplished. It was a lazy day. I can’t wait for the spring to get here. I’m hoping to start golfing with my brother as soon as the weather gets nice. I’m new to the sport so it should be interesting😀. I hope you have a great evening. hugs stacey!❤️
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@ssales13 Stacey, so glad you are going to take up golf. It's a very difficult game, but lots of fun. I just love being outside and seeing the lovely scenery. Now you will have to keep me posted on your golf 🏌️♀️progress, as well! Stay warm and dry!
Hugs, Pam 💗
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