Bone Mets Thread
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Hello,
Just introducing myself on this thread and asking a few questions. I was dx in March after a high alkaline phosphatase that had doubled in the 5 months since my prior labs. I've had a nuclear bone scan that showed skull, spine, bilateral ribs and bilateral pelvic bones. Then I had a PET scan/CT that showed about 6 lymph nodes involved, and innumerable spots on my skeleton, and all of the bone marrow of my spine, and pointed out the ilium specifically. It also said the clivus was involved. The MRI of my abdomen showed possible lesions in the spleen but nowhere else and the spleen looked normal size and didn't uptake on the PET. I had a Lumbar MRI that corroborated all of it, but showed no fractures. The brain MRI was clear. Some of these reports have language that I don't understand, but I'm trying to read on here and google to learn.
I had a bone biopsy that showed the cancer is MBC, 95% estrogen, 90% progesterone, Nottingham 7 and Grade 2, Ki67 40%. My MO seemed unconcerned about the Grade and Ki67, saying that it is slow growing because it has been 13 years since my primary was diagnosed. Does this sound right?
My MO had said by phone that she would use radiation since I was in a lot of pain in my lower back/pelvic area. But, when that pain subsided and I visited her in person, she had changed her mind, saying we would save that in the arsenal for when I am in more pain there. Does this sound right?
She also said by phone that she would probably begin with Ibrance/Letrozole/Zometa. I'm in pre-screening for a clinical trial that she thinks I qualify for. If I'm accepted, my earliest start date would be May 3, but I have to repeat some of the scans for the trial's required window and may not be able to start until May 10 which is the day before I leave for a beach trip. If I want to avoid side effects on the trip and wait until I return, I wouldn't start until May 17. If I start May 3, there's no issue. But, if I can't start until the 10th, should I start before my trip or could I safely wait to begin until after the trip? If my MO and research nurse think I qualify, should I assume I will, or are there a lot of issues that could come up during pre-screening?
My MO said I would get Zometa every 3 months. I didn't have a chance to ask her when I can begin it? I am anxious to get started, but can one begin Zometa before the CDK 4/6/endocrine or is it unrelated and I can start Zometa any time before or after I start the others?
I read through a lot of this thread and have learned so much. I really thank you for any help you can provide with my questions, and for all of the posts you've each made that I have found so helpful.
EDITED TO CHANGE ACCIDENTAL MENTION OF FEMARA TO ZOMETA.
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Welcome Benisse. Am I correct to assume that you have not been on any aromatase inhibitors before?
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I thought of two more questions:
Am I still considered bone mets only with the better prognosis that goes with it if I have distant lymph nodes involved?
I planned to get a 2nd and 3rd opinion but don't have time now. Do some people get other opinions only after the first protocol fails? Or once they get started on their first protocol?
Thank you!
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Welcome Benisse - I haven't been in a clinical trial so I am not sure how to advise you there. I just wanted to mention there is a thread for clinical trials and the folks there might have more insight on timing and experiences there. In terms of a second opinion, I didn't get one. I really liked my MO and trusted her completely when I advanced from stage 2 to stage 4 it was comforting to work with someone who knew my whole history.
Anne - I had an IM nail (a rod essentially) put in my right femoral neck and femur. When my bone mets were discovered they had eaten so much of the femoral neck I was a fracture risk. I have minimal pain from the hardware itself. It gets sore if I lay on that side too long. Mostly I just have lingering stiffness in the muscles from radiation to that area. Otherwise I'm two years out from surgery and it causes me minimal issues.
GoKale - I'm sorry to hear about your progression. Sending support, prayers and all the positive vibes your way. I'm glad you got to go on your trip and I hope that was fun despite the challenges getting home.
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emac877 - Thanks, I feel similarly about my MO so your comment is very helpful.
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I didn’t get a second opinion. My previous cancer was diagnosed stage 2B in 2010 and my diagnosis in 2019 was done with a bone biopsy so I didn’t think I really needed a 2nd opinion and wanted to instead get started with treatment.
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Welcome Benisse but sorry you find yourself here. Yes, if you were 13 years between primary and MBC, it is slow growing (considered indolent). I’m in the same classification as it was almost 16 years between my original diagnosis and mets. You will need to check with the clinical trial folks but it sounds like it doesn’t matter to them if you delay your start. So, unless you are in pain or have other concerns, I would think you can comfortably take that time away and start mid May. It’s very unlikely to make any difference from a cancer perspective but emotionally you may be more comfortable getting things started as soon as possible. Go with what works for you - it would be great not having to worry about side effects while you are away.
I’m a bit confused about your reference to Zometa (bone strengthened) every three months as I thought it was monthly. They will likely want you to start that regardless of what you decide. I don’t think they will start you on Femara if you are going on the clinical trial as there is typically a wash out period.
Hope this is helpful. Sending hugs. And hugs for you GoKale. So sorry about the progression.
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I am on zometa every three months. I think this timing is still in clinical trials, but my doc has gone with it. I'm happier with that schedule because of the possible side effects of the drug.
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gokale, I'm sorry to hear the news of your progression. This disease just sucks. Sending hugs, my 2017 dx sister
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Benisse, I'm sorry about your bone mets. I was diagnosed with bone mets in 2020, right before COVID hit the fan. I had been getting Zometa infusions monthly until two months ago. Now, I'll be getting it quarterly. My MO visits have also been pushed back to quarterly. The first Zometa infusion was rough, but the next one was a little better. After that they were sort of a non-event.
I'm not in a clinical trial, although I was with my first diagnosis in 2007.
Radiation REALLY helped with my pain. I think I had a total of 8 sessions – three on my spine, five on my hip/femur.
I'm taking Ibrance and Arimidex. The Ibrance dose was dropped from 250 to 100 after my neutrophil and white cell counts dropped more than my MO wanted to see.
Keep us updated. This is a great group!
Carol
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emac877, gailmary and moth - a thousand thanks for your collective input. it allows me to pursue the recommendation with a better outlook. i'm so distrustful of medical professionals overall, unfortunately, with well-proven cause. moth - i have been meaning to share that your tagline / blog name "Never Tell Me The Odds" is just the most inspiring statement. that single phrase has truly helped me put so much of my worry and sadness into perspective. it's brilliant! so - to be continued. thank you again for being here for me. i wish i knew how to give more back.
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edge, have you looked at moth's blog? It is really inspiring, and I check it often for updates.
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This IS a great group. So glad your here so nobody has to go through this alone.
Benisse, sorry to hear of your progression. You too Gokale. Edge, I wish there was more I could do for you and everyone here.
I never went for a 2nd opinion. Can't advise re: clinical trial.
5 yrsnow stage 4 and shoulder blade and arm and chest pain gradually has gotten worse. Delayed radiation reaction? Cancer in arm is stable and pet scan sows no avid upuptake. Then I see online that these pains are normal for 30% of us particularly with Mets. Anyone else. This article. Explained alot.
Can't link it.
Search healthline, shoulder blade pain breastcancer
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I'm so grateful for the welcomes and replies.
Cowgal - I was on tamoxifen, lupron shots until I could get my oophorectomy scheduled, then AI's for total of 10 years. My MO thinks the mets grew mostly since I went off of exemestane in 9/2019.
emac877 and Cowgal - It's helpful to hear reasons why others haven't gotten a 2nd opinion. I am anxious to get started and do trust my MO.
Sadiesservant - I didn't know that term indolent. I will learn about that. I checked and the trial wants certain scans within 4 weeks of start, but I would be within that window whether or not I wait until after vacation. I was trying to get started by May 3 so I'd have a chance to get used to the side effects before I travel, but it has been hard to get scans I need scheduled and my MO will be out of the office so I'd have to be started by a different physician. I may just opt to wait until after my trip. Thanks for your knowledge about that. My MO did refer to that Zometa frequency as being shown as just as effective as monthly in trials as bevjen said. I was surprised as I thought it was monthly at least for the first year. My first infusion will be Friday. I feel like I should have been on it earlier because I fractured a vertebra while playing golf in 2017. The trial is phase III for Roche's version of oral falsodex (sp?) vs Letrozole both with Ibrance. I won't know which one I am on as I'll take a placebo in place of the one I am not on. So, I'll be on Ibrance and Letrozole or GDC9545 and a placebo.
sunshine99 and gailmary - great information for me. Thank you.
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Gailmary, interesting you should mention shoulder pain as I've been going through hell for seven weeks with intense pain in my right shoulder blade. There is clearly some nerve impingement as I get numbness and tingling in my right arm. It feels like someone is driving a pick through my right scapula and then the pain expands from there. I'm sure some is my muscles clenching but nothing was touching the pain except morphine but that's making me sick. 🙄 I'm trying gabapentin with a lower dose of morphine today but am not hopeful. The pain is not completely under and my stomach is already bloated and unhappy from the morphine.
We're waiting on results from an MRI but I suspect either progression of mets on my scapula or something growing in the brachial plexus. Ultimately I need to have a treatment take hold (two back to back fails). Just started back on Xeloda today. Let's hope I can keep it down with the morphine issues!
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Uh-oh, Sadieservat, This article I can't link said there is a strong connection with right shoulder blade pain and liver mets! Healthline published it in the last year or so.
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I found it and yes, you can get referred pain from liver mets. I have progression in my liver but I don’t think that explains it. But I’ll know better once we have the results of the MRI… I hope! I’m having so much trouble resolving the pain. Up again last night sick from the morphine so that’s out!
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Gail Mary- I have definitely had post radiation pain both times I have had bones radiated. It came late- at least 6 weeks after. Also got vesicles and itching after rads to numerous bone. It seemed to be muscular pain- limited my range of movement. Still have it from my most recent rads- PET soon will get more info
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I have 3 bone Mets and lymph involvement. So basically ogliometastatic.
Did you do the clinical trial for SBRT? Woukd you mind sharing your experience and outcome?
I want that treatment as well. Trying to get NE
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hi ddil. Sorry I can’t provide advice in your case.
A bit of a cross post as I’ve primarily been posting on the liver mets thread but I thought folks might want to be aware. About 8 weeks ago I developed a pain in my right shoulder blade - felt like someone was sticking a pick in my back. It got progressively worse radiating down my right arm, causing a severe ache in the elbow and sensations in my fourth and fifth fingers. The pain was really debilitating at times, likely as it cascaded causing muscle strain from compensating. There was some numbness and tingling but the neurological symptoms worsened a couple of weeks ago. MO ordered an MRI which showed cancer in the brachial plexus and progression of tumours on my spine (odd that the spine met wasn’t picked up on my last CT but they were likely more focused on the progression in my liver and I have such extensive bone mets that they couldn’t possibly monitor them all). Meet with my RO tomorrow but the diagnosis caused quite a bit of concern as there is a risk of losing nerve function. I’m on an amazing drug cocktail of pain meds and steroids to get rid of the swelling on top of the oral chemo I just started. 😳 Anyway, just want folks to be aware and ready to jump on something like this should it rear its head!
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Sadiesservant - thank you for letting us know. I hope that the cocktail provides some relief and that they can find a way to save nerve function. I would never have thought to think of the cancer spreading there.
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Hi all, big relief, it is not in my brachial plexus. After speaking to my RO yesterday, she went through the scan with me today prior to radiation planning. There is a clear area from C7 to T2 with new lesions that are pressing on the nerves and narrowing my spinal canal. Problem… Plan is for five rounds of targeted radiation to the region starting on Friday. Looking forward to getting this behind me so that I can get off the steroids and pain meds!
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Been losing my hair lots Of it so much I may be bald in another month or two.
Is anyone else experiencing this ?does It come back ?Hair is long and grown in since chemo so sad to be losing it again
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sadieservant - hoping that this is behind you soon! thank you for taking the time to share. btw, my smaller mets don't show up on CT.
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Beth196, by any chance did you have COVID a couple of months ago? Significant hair loss can be a common SE. It certainly happened to me - I lost tons. (my apologies for being here; I’m not stage IV but was looking for bone mets to skull info when I saw your question.)
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tedemptivesifferer I have not had covid but thanks for the reply
I do have lots of bone Mets in my skull as well as everywhere else almost maybe I could no help if you have a question
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beth1965, I’m losing a lot of hair as well. I can sympathize with your frustration I think it’s from the Tamoxifen. I switched to a different kind of Tamoxifen for a short time to see if it would help, but it didn’t and my hot flashes were worse so I switched back. I take Biotin daily. That has helped strengthen my nails but my hair is still very thin at the crown of my head. Fortunately, the hair in the back is still pretty thick.
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I have skull mets as well and the exact places the mets are, I have no hair at all. What I do have on the sides of my head is very thin, I wear a hat everyday.
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I lost tons of hair while on Verzenio.
I think it's slowed with the switch to Lynparza. Or I'm kidding myself.
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