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Tomorrows the Day

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Tomorrow I find out how bad this is. I already know it's bad by the level of pain I'm having and how quickly it's moving. I know for sure there's a LOT of bone mets. It started in one rib, now the other side, my hip joint, multiple other areas. I am SO angry. I'm waiting for the damn to burst, because mostly I've been numb emotionally. I'm guessing it's in the organs as well. So.....

Question for those of you whom already been here. I know it's definitely in the bones, but my CT was done probably a month or more ago (I've lost track at this point with all the appointments). Will they likely order a new CT or MRI, bone scan etc before they discuss treatment if there is any? I can't stand sitting around doing nothing while this stuff is spreading inside of me! It's painful (even on Oxycodone) to even walk so I'm pissed I'm stuck in this house!!!!!

I appreciate you all being here and for your words of wisdom.

Comments

  • threetree
    threetree Member Posts: 1,274
    edited April 2023
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    Pupfoster1 - Just so very sorry to read about your situation. I don't know about the lag of 1 month and the scans, but my scans need to be repeated later this month before I start Verzenio. The ones they did in February following the discovery of my mets are too old now to give them the baseline they will want to measure against how the drugs do. I for one am extremely frustrated with the time lapse with all of this. They discovered my mets in late January in the ER. It will be late this month before I actually start the Verzenio. Getting a fulvestrant shot this Wednesday for the first time. It is going to be essentially 3 months since they discovered my mets and the time when I will actually be getting treatment. I too feel that mine have kept spreading over this time period and I feel worse by the week. I hate to think what the new scans will show compared to the ones they did in February that should have led the way to treatment. I wish you all the best and hope things get better for you real soon!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
    edited April 2023
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    pupfoster,

    I have been living with stage IV for over 11 years. I know it is difficult not to panic but one thing I've worked on during this time is not jumping ahead or self diagnosing. This takes some practice but I have had aches, pains, general unwellness, etc. , over the years and despite panic early on, none turned out to be anything related to my mbc. However I still experience low level panic if something seems amiss 🤷🏻.

    Your gut instinct may be right or it might not be. My point is that we have no crystal balls and don't know if mets have spread or moved to soft tissue until medical evidence confirms it. Stage IV is rough enough so don't borrow trouble (my late mother often said this). Yes, I've had 11+ years to develop this attitude but even I struggle at times.
    As for scans, I think this is something you need to address with your mo as, in my experience reading this forum, it seems to vary widely. Doctor's choice, perhaps ? There seems to be a lot of “hurry up and wait" with bc, even mbc. I'm terribly sorry to hear about your pain as that in itself is stressful and bad for your health. Do you live in a cannabis legal state?

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited April 2023
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    Thank you so much Tree. And I'm so sorry you've been waiting so long to get started as well! I know I had to wait for a bunch of stuff first time around, but I was in little or no pain. This is WAAAAAYYYY different! I pray you get a good response with your treatments. Hope we can stay in touch.

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited April 2023
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    Hey there Ex and thanks for your feedback. You're right, I'm projecting right now. but its beyond frustrating! I had scares over the past 12 years, along with some sheer panic, and this time i ALMOST let my guard down. I'd been having pain since December and NO ONE until I saw my GP recommended I go to my Oncologist,, even knowing my history. I should have pressed for scans earlier on. Would it have made any difference? Idk,, but I sure know it has gotten a LOT worse just in the past month.

    I AM in a legal State (MD), and will be speaking to to my Oncologist about cannabis tomorrow. I did try it several years ago (medical), and I didn't like feeling stoned. Used to smoke recreationally years ago and never felt so out of it. The Oxycodone is barely touching the pain (I have a high tolerance for opiods). even taking more than prescribed. Yuck.

    Anyhow, thanks again for responding and sharing your experiences with me. You give me a glimmer of hope.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
    edited April 2023
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    Hope the mo appointment went well. What did they say about cannabis? My experience in California is that most doctors know little about it but why should they? It’s federally illegal and the science based research is paltry. My own feeling is that with the advice of a knowledgeable bud tender and making yourself into your own clinical trial (lots of dosing/product experimentation) it can be a useful complementary tool. There are many products available that contain ratios of CBD (non-psychoactive) with THC. (Psychoactive). Choosing products with a high CBD percentage and just a smidge of THC seems to work for many who don’t like the high. These come in sweet edibles, capsules, tinctures, drinks, and more. Take care

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited April 2023
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    Thanks for checking in with me Ex. The so called "good" news is that it looks to be only in the bones. Bad news is it's all over. Sacrum, hip ribs, scapula, breastbone, you name it. They are STILL waiting on the final Her 2 results to come back from Johns Hopkins. The initial pathology is showing +2 which is basically unknown, and oddly enough my cancer is coming back as ER/PR- which the initial time was ER/PR+ Her2-. She said it's not common for it to change but it does happen--of course! So, she's waiting for the final, final pathology to return (hopefully next week) to start tx. If it's triple - I believe she'd like to try immunotherapy first. In the meanwhile I see my already scheduled cardiology appt, Thursday is MRI of lower spine, hip area, Friday Bone Scan. I'm thankful it wasn't in the vital organs yet. She also prescribed stronger meds-Oxycontin as a long term pain med, with the Oxycodone for breakthrough. She DID actually recommend cannabis as well as other therapies in conjunction with tx/meds. However, she does not do the State required paperwork, so I'll have to go to a money grab place to get that done. They just passed rec use here in MD beginning July, but I haven't heard if they've figured out the distribution end yet for all the ridiculous reasons like you're seeing there in CA. Idk why, but I thought it would be a lot easier for you all out there to get the MMJ. Sorry if that's not the case.

    So, are you currently receiving tx of any kind? I glanced back at your stats but I'm not seeing anything current. I hope you continue to have good health all things considered. This sucks, but as I was saying to my husband, it is what it is. YUCK


    Edit to add-I did try MMJ several years ago, and even with getting an Indica/CBD combo I got stoned in an uncomfortable way. I know MMJ is a LOT different from weed of ye ol days, but I didn't like it last go round. I'm definitely open to trying again though if it means getting off of some of the pain meds. I've used Kratom in the past but the pain level I'm at with this shit, I doubt Kratom would help at all.


  • exbrnxgrl
    exbrnxgrl Member Posts: 4,749
    edited April 2023
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    Cannabis, whether recreational or medical, is the same. In many states, medical licenses let you buy higher potency products or a larger quantity in a given time frame (In CA it’s daily). The biggest difference that I see between yesterday and the present is that you know what you’re buying in terms of strains, percentages of THC/CBD, even growing conditions. This gives you more control as you work out the dosing that’s best for you. I have been using cannabis for years for both pain and as an appetite stimulant. I have a very high THC tolerance which does happen over time.

    My treatment has been almost exclusively AI’s. Yes, I’ve tried them all and have been on Aromasin for at least the past 5 years. I also had radiation to my bone met, upper femur, and did 3 years of an older bone strengthener, Aredia, which doesn’t seem to be used anymore. No chemo, no Ibrance or Verzenio. My mo agrees that the reason for my longevity is unknown given the very non-aggressive tx I’ve had.

    Pain is still an issue for me because of its chronic nature but it’s somewhat low level. I hope you can get yours under control soon because that will make life much better! Take care

  • pupfoster1
    pupfoster1 Member Posts: 176
    edited April 2023
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    Well that's awesome whatever you:re doing is working!!! I'm the cannabis lightweight, but unfortunately for me, I have a high tolerance for opiods. I can take 15 mg and it does nothing for the pain, just makes me tired. CVS is out of stock on the Contin until TH evening, so I'm just trying to get through till then. And I guess I'll be needing to set up yet another appt to get the process rolling for the MMJ card.

    Thanks again for your help and conversation. It's been really helpful

  • sistermoon62
    sistermoon62 Member Posts: 2
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    Hello I've had my first breast cancer back in 2008 and then in 2018 Someone ran a red light and hit my car head on with my husband at the wheel. We both found out together that we both had metastasis cancers. Mine went into my bones and my husband had lung cancer. My husband passed away suddenly in October after 43 years of marriage since I was 17 years old. Since my husbands passing I've been so upset and unfortunately this affected my cancer. It's been at a stand still until now which it means the medicine doesn't work anymore. I found out yesterday in an email from the hospital and not one person around to give me a hug it was awful. I'm a very strong women at 61 but miss my husband so much we were truly in love all those years. Wednesday I'll find out more but in looks like it is now all over my bones and in the skull I don't know if this is normal for this to happen. I was on Ibrance since 2018 and just 6 months ago there was nothing now it exploded. I wish everyone luck and love and especially happiness with their love ones as they are going through such a terrible disease.

  • lw422
    lw422 Member Posts: 1,399
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    Hello Sistermoon62. I'm so sorry to hear of your recurrence and the loss of your husband. Post an update after you find out more on Wednesday. My very best to you and sending hugs your way.

  • moderators
    moderators Posts: 7,913
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    @sistermoon62 We are so sorry for your loss and for all you're going through. We'll be thinking of you Wednesday, please keep us posted.

    The Mods

  • sistermoon62
    sistermoon62 Member Posts: 2
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    Thank you