How long have you been Stage IV?
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Congratulations on the excellent news. Fingers crossed for the next PET scan.
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@livinglifenow Pam, So glad everything went well! I’ll be praying for great results on your next PET scan.
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I just realized when I woke up this morning that two years ago today I was diagnosed with stage IV MBC. So, two years and going strong. I will be celebrating today! 🎉
Wishing all of you many years! 🌷Hugs, Pam 💗
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@livinglifenow Congratulations, Pam! Here's to many more good years!
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@livinglifenow Yes, here's to many more good years. It's been about 2 1/2 years for me and I'm starting to get bored with breast cancer. I am sure it will get exciting again, but I hope not for a long time.
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Hooray for two years ! Hope you have many more anniversaries to celebrate .
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Thanks you, ladies, for your words of encouragement!
@tougholdcrow Thank you for the laugh. I know what you mean about getting bored with cancer. It is a drag. But, the less excitement the better. Will just have to find excitement somewhere else!
Hugs, Pam 💗0 -
I have stage IV MBC Her2 positive. lung, lymph node, chest wall mets. some bone. had 5 rounds of chemo. now on immunotherapy infusions, letrozole and just started the ibrance 125 mg, about a month ago. Was on the last day of my 3rd week when out of the blue I got a bad infection in my left arm. Turned deep red, tight, inflamed, chills, etc. I have two tumors in my left axilla Cutaneous met that never totally went away from the chemo. Was put on an antibiotic. infection went away, but the 2nd day after the infection started I got severe pain in my upper left shoulder. I just started my week off, so ibuprofen helped quite a bit, but after i started the ibrance again last tuesday it got allot worse even with nsaids pain wouldn't ease. After researching, i find out ibrance can cause that. i think it's time to tell my oncologists to lower the dosage. the pain is unbearable.
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@elohimis1 It looks like this is your first post on BCO. Welcome! But sorry for the reason you are here. All I can say is "Wow!" You've been going through a lot. It sounds like, through your research, you've determined that Ibrance might be the cause of all your current pain. Hopefully, a lower dose or switching to something else might help.
I had a similar situation recently. I had been on Anastrozole for a year. At first I felt OK, but eventually I felt so yucky that I asked to switch to Exemestane. That was about a year ago. Again, at first I felt great on it, but slowly I began to have achy, weakened muscles. Then the muscles started tightening up to the point that my sciatica was being pinched and I could no longer sit, barely walk, and even lying down eventually became painful. My doctors tried PT, muscle relaxants, neither of which helped. I even started taking over-the-counter and prescription pain medications, which barely tamped down the pain a few hours each day. Finally, I requested going off the Exemestane. Five days after stopping, my symptoms began to improve. Thirteen days later I could sit to eat breakfast. (Trying to eat in bed was getting old after several months of doing so.) After 2 weeks of no Exemestane, I started Tamoxifen. Although I feel better than on the aromatase inhibitors, I have some fatigue and, of course, hot flashes. My research shows that these symptoms can improve in some people after 3-6 months. Fingers crossed!
It is my hope that research continues to find better treatments that have fewer side effects. Please keep us posted on your treatment and any changes that lead to improvement. We all love hearing success stories.
Hugs, Pam💗
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Hi @elohimis1 , welcome to Breastcancer.org. We’re really sorry for all you’re going through right now.
As you can already see, there are members here who understand treatment changes, side effects, and the uncertainty that can come with them, and you’re in good company here. Please keep sharing and updating us on how things go, especially after speaking with your oncologist.
We’re glad you’ve found us.
The Mods
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Hi all! Things are def different! I’m no longer on Kisqali, Letrozole or Xgeva. I have progression in my pleura and had a thoracentesis in each side in past week. Breathing better! Unfortunately, they also found 2 spots in my brain, one dura based in right cerebellum, the other in the basil ganglia.
I am in the clinic right now waiting on a simulation/mapping session to prep for SRS radiation. Both spots are very small, Rad Onc says he will take care of them! I’m now on a 3 month rotation for brain MRIs to find any others when they are small & take care of them asap.
Starting Fulvestant tomorrow- pray I tolerate it as well as letrozole! Meeting with my MO on 6/23 after radiation on brain mets to decide other next treatment. Top two contenders - Verzenio or Enhertu. Both pass the blood brain barrier effectively as well as work on rest of the body. I prefer Verzenio first to leave Enhertu as a third line.
Very anxious but still optimistic that we can keep the cancer under control.
I’m reading about you all and so happy you are all still here and keeping in touch.
I will let you all know how I’m doing. First time for radiation- haven’t been a virgin in a while 😜Hugs, kisses and prayers for all of us!!
xoxo juliana5 -
@elohimis1 Did you get your pain resolved? I am feeling for you.
@livinglifenow I hope you are also feeling better on Tamoxifen.
@eddiej So sorry to hear about this progression and would find it so stressful! You have an amazingly positive attitude, and I hope that helps carry you through.
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@tougholdcrow Yes, I am feeling so much better off the exemestane. Tamoxifen is much more tolerable, though I have more hot flashes! 🤪
@eddiej So sorry to hear about your progression. I have had radiation twice. The first time 17 years ago, and the second time last year. Praying you have remarkable results. Keeping you in my thoughts and prayers!
Hugs, Pam 💗3 -
So sorry to hear about the progression and agree with @tougholdcrow about your amazing attitude. I have had skull radiation, though not brain radiation. Highly recommend making sure they prescribe anti-nausea meds and steroids before your first session as they forgot to do that for me and the first morning after was very unpleasant. The radiation will cause swelling within the skull, but once you have those meds, the side effects are painless, if somewhat comical - I had double vision and dizziness and balance issues - you definitely will not be able to pass a field sobriety test! I found an eye patch helpful, as it controlled the double vision. This will all resolve, although it took 6 weeks for me.
If the radiologist talks about fitting you for a mask, it's totally non-invasive and painless and sounds scarier than it is. I have done it twice, once 4 years ago for radiation to the clivus bone and again yesterday for for radiation to C1. There are two members on here that I can think of - Illiemae and Mara - who have had brain radiation with successful results that lasted quite a while. You might want to look them up.
I am also Her2low, and Enhertu is one of the meds my MO has mentioned as future possibilities. I think as you do - I would rather do Verzenio first, for several reasons - having already adjusted to Kisqali, I think it would be an easier adjustment, and it's still an oral med, so you have more freedom to travel. I have been on Fulvestrant for 4 years and only once had a reaction (sweating, dizziness, heart palpitations) that lasted about 30 minutes. My MO recommended adding Pepcid AC to the claritin I was already taking the day before and morning of each injection and it never happened again. After the "loading" shots, I had a small amount of bleeding with bowel movements which research says is normal. The injections themselves are a literal pain in the ass and your experience will vary depending upon the skill of each nurse. Over the years I have collected several tips from various nurses which definitely work for me and share them here hoping that they will work for you:
insist that they give you the vials to warm up - even if they tell you they're room temperature that's not the same as body temperature. I put one in each armpit and that works well for me. 😂
stand facing a chair with arms so you can hold on and bend the knee of the side being injected and rest it on the seat to take the weight off of it
ask the nurse to give you a 3-2-1 countdown so you can cough as she injects
once the injection starts, ask her to "tap" lightly around the needle as this distracts the nerve endings
ask for 2 sandwich size bags, each about 1/2 full of ice cubes, and press them to each area for about 20 minutes - don't use those snap and chill automatic packs - they won't get cold enough. Icing before the injections is not recommended, but icing after is fine. I am amazed at how much this improves post-injection soreness.
If you haven't already found this, there is a "Faslodex Girls" thread where you may find more info.
Will be thinking of you today. ❤️
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@eddiej Juliana, So sorry about your progression! You’re in my prayers for sure.Ive just gotten through my 3rd Fulvestrant shot (you do the 1st 3 every 2 weeks) and I haven’t had any problems. I hope for the same for you. I’m on TruGap for about 5 weeks and was so sick this past week it was unreal. The doctor called and said that they were going to lower the dose to see if some of my side effects would go away. @eleanora had some really great advice about Fulvestrant shot. Hope you have a good day.
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@ssales13 @eleanora Hi ladies! I’m home after the shots. Not fun but I made the nurse laugh when I came in with instructions for her (thank you Eleanora!) She happily followed every step - I can be persuasive 😂😂 So happy the two of you seem to tolerate Fulv so well. I pray I have same! I will check in on the other thread for Fulv.
Received a note from my OM this afternoon answering a question I posed. He confirmed I’m heading to start Verzenio in late June. New meds, new world.
Radiation is occurring next Tuesday, Wednesday and Thursday. The mask fitting was not bad at all. Can’t wait to get this shit out of my head!! ⚡️⚡️⚡️@tougholdcrow @livinglifenow and my other lovelies on this forum - Love your energy, knowledge and support!! Helps me keeps me grounded and sane.
Ciao for now! xo juliana
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@eddiej - I did 2.75 years with Fulvestrant shots and they never got too bad. At first my clinic was keeping them in the fridge until needed, so a friend of mine who drives and accompanies me to the appts, would sit and roll the vials in her hands and warm them up while the nurse did all the initial routine appointment stuff like take vitals, ask me questions about if I'd fallen in the last month, etc. By the time we were done with all the preliminaries the shots were warm enough. I always stood up at the rolling medical cart that was in the room, but I know many like to lie down. I had read the initial post on the "Faslodex Girls" thread, so asked them to go slowly - something I found I had to continually ask and emphasize, but they did it happily. We also played music that we found on the clinic's computer (YouTube) or various people's phones (Spotify). That helped a lot. I would always tell them I wanted to chat too, and would ask the nurses about their kids, etc., or we'd all talk about music and old musical groups and more. I also put the weight on the leg/foot that was not being injected, and did it all "pigeon toed", as the thread said somewhere that if you do that there is no way that your muscle can tighten up and cause problems when they inject.
Later, my clinic started to keep the vials at room temperature and so my friend stopped warming them ahead of time. I found Eleanora's comment above interesting about how room temperature is not body temperature (duh), so keep on warming. I'd never heard or thought of that. If I had, I think my friend would have continued rolling those vials in her hands every month. Eleanora added even more great tips, that when combined with the ones on the original thread, make for a real good instruction manual. I never did ice or use any car heaters (neither I nor my friend even have them in our cars), so I can't speak to any of that, but I'm sure you will find the things that work best for you and it won't be too bad. Good luck!
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Thanks for the update. So glad things went well for you. May they continue to do so. Also glad you had a cooperative nurse. Sadly, that won't always happen, although most are good, so keep your persuasive skills at the ready! I once had a nurse insisting on injecting Xgeva into my right arm even though I requested the left, "because that's how she always does it". Nope - my body, my choice. You may have to repeat the instructions for each nurse. I think it makes it a little more acceptable by emphasizing that each tip came from a "wonderful nurse" who did a previous injection. We're educating one nurse at a time and maybe helping other patients in the process. 😉
Great advice about chatting during the injection. It helps to keep you from tensing up. Since Juliana will be starting Verzenio, I'm sure she'd love to hear about your tips and experience with that, since you did so well on it.
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@eleanora @threetree @ssales13 @livinglifenow @tougholdcrow and others following along: I did read the Verzenio thread most of last night. Oh my!! I’m praying it’s the old adage that those who have nothing to complain about just don’t post.
Eleanora, did you start the Verzenio yet? Your last post on the thread is from April.
ThreeTree, I’ll weigh in on the other thread in next few days so I don’t bother those here with specific chat.
im out to lunch right now and my friend just showed up.Wishing you all a comfortable fun weekend!
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My wife was diagnosed just over 3 years ago. She had her monthly appointment with her oncologist last Friday to review labs and continued treatment plan. She is still on first line therapy and is essentially no evidence of disease other than slightly elevated cancer antigen markers (hovering right around normal levels). He actually discussed the possibility at some point in the future, if she continues to be no evidence of active disease, to discontinue treatment and just monitor cancer activity with monthly Signatera tests.
Anyone had that conversation with their doc? He did say he would suggest she consult with a breast cancer expert, since he is a generalist, prior to making such a decision.
He is also going to order up an FES-PET scan instead of the regular FDG-PET to hopefully better visualize her disease.
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Hi @bighubs ,Edit - AIs don’t interfere with FES PET scans (tamoxifen and fulvestrant require a 6 month washout) However, the FES tracer doesn’t show mets in the liver or GI tract. It would be a good idea to consult with a breast cancer expert before deciding on next steps. I hope your wife continues to remain stable. All the best.
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it will be ten years MBC de novo Mets to liver for me this coming September 2026.
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@katedsweet1 Congrats on 10 years! That is amazing.
Hugs, Pam 💗
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@katedsweet1 - Thanks so much for letting the rest of us know about your good and lengthy run! So far I've managed 3.5 years of stage 4, after about the same at stage 3 (original diagnosis). You really give me hope for all of us, and I am more motivated this morning now, than I have been in quite awhile. Wishing you nothing but the best of continued good luck for a long, long, long, long time!
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@katedsweet1 - I am also so inspired about your story- ten years from a de novo liver mets analysis is incredible! What have your treatments been during this time?! Thanks so much, these are the stories everyone wants to hear!!!
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@bighubs my oncologist told me the same. My first NED scan was October 2024, and he said 3 years of NED and we can discuss discontinuing the targeted treatment, and hormonal treatment after 5 years of NED (I removed my ovaries already but still taking Faslodex). I’m keeping my fingers crossed and looking forward to this conversation, but it is an unusual approach as generally stage 4 are medicated for life. I wish your wife long long life of NED.
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