Bone Mets Thread
Comments
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i research like you. it is very important. keep reading. but still i want to hear an expert tell you that 2.0 SUV something or other is cancer. which expert ... oof ... keep reading. I have no idea.
as it turns out, there are a lot of exceptions. average survival is ... an average. who knows what all half those patients had going on.
we're all going where no man has gone before. fear is what a normal people feel.
I am scared too, but fighting on. you keep going and keep us posted.
>Z<
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Claudia,
I'm sorry you have been hit with this out of the blue - not having answers is hell and makes our minds go to the worst of places.
If possible, until you talk to a specialist (or two, or three), try to look at the couple of silver linings:
First, the radiologist that read your first scan did not think that the aorta uptake was worth mentioning. If the link attached opens, it should contain a table with physiological uptakes for a number of organs, including the descending aorta. Seems that an SUV of 2.0 is within the normal range:
Second, the new radiologist thought to mention the uptake (why? no idea unless you get to talk to them) but characterized it as "stable". A 0.2 change in SUV is within the error of the scan. This is a good thing - it's less likely that something that has not shown any growth over however many months went between the two scans is a super aggressive tumor that will kill you in a year or so. Not impossible, but less likely.
Third, there are in fact reasons for increased uptake in the descending aorta other than cancer (if you do a search for "descending aorta" in the attached documents it should pinpoint the relevant passages). Atherosclerosis is one of them.
https://pubs.rsna.org/doi/full/10.1148/rg.315105222
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3097820/
Keep on your doctors until they give you some answers, but don't count yourself out yet. I'm crossing all my fingers and toes that it's nothing more than an over-cautious radiologist.
((Hugs))
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Claudia, I agree with Z and Piggy. I think that it is too soon to count yourself out on this one. The update is minimal and considered stable. There are several reasons, other than cancer, for increased uptake in the descending aortic wall. As Piggy suggested, talking to a radiologist who can explain the finding is a good idea. Were there any comments in the report about recommended follow-up with cardiologist or any other specialists? I ask only because my experience has been that if something unusual is seen that needs specialist, a notation is included about recommended next steps. For example, when a nodule was seen on my ureter, the radiologist recommended evaluation by urologist to investigate possibility of transitional cell renal cancer. I think it is important to keep in mind that your MO, who I assume has reviewed the reports, was not alarmed. If she had called you immediately upon reading the report, it would have been time to panic. (My DH once received a phone call about a scan at 10:00 p.m. Now that got my heart racing.) in addition to contacting the radiologist, you should call your MO and ask about it. Another thing to keep in mind, PCPs are valuable in the medical community, but they are not experts in the aortic wall or cancer. Your PCP gave an opinion, but it was based on the knowledge available. Here is what I want you to do. Take a deep breath, give your DH a big kiss, and relax. Once you have relaxed for a while, make those calls to get more input and information. Hopefully, the radiologist and MO will help bring you back from the edge. If not, come back here, and we will help you. You are one of the strongest women I have met on these boards, Claudia. I know you will face head on whatever happens. You have seen many challenges, but you have survived them and continue to do so.My hope is that this is just a little bump in the road, and you are used to huge mountains breaking through the ground in front of you. We are here for you.
Hugs and prayers from, Lynne.
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I have a bone scan tomorrow. Am nervous about it because of rising tumor markers and increased pain. Also, pain on right side back, up under the ribs! And am wondering if I hurt my hip on the right when I fell a few weeks ago because it’s hurting a lot to walk in it! Say a little prayer for me
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Prayers for you Gracie! Big prayers. You'll get thru it and continue on! I was a nervous wreck the whole month of May. Finally started on all the meds. And, I do feel better.
The ladies here are just wonderful and supportive.
crissy
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Good luck, Gracie! Saying a prayer for you for tomorrow!
Claudia, Lynne has some good info. Ask your oncologist. They are the experts. I hope all comes out well! Hugs!
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Gracie - good news or bad news within a week you will know what is going on, get a plan and normal (such as it is) will return.
Z
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Chrissy50: I was on Ibrance for almost 2 years. I was on the Pfizer Pathways program and they picked up what ever my insurance did not. My oncologist's office contacted them and got me enrolled in the program and it was a Godsend! Say what you want about "Big Pharma" but I am indebted to Pfizer for that.
Cindy
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Hi All,
Is there anyone here on Afinitor/Exemestane (ER+HER2-) that has had a bout of diarrhea that starts out like it could be food poisoning or a general gastroenteritus virus and goes on for 6-7 days? I just went through that and spent 6 days in the hospital and it takes a lot for me to go to the ER! Yes, it could have been just the gastro virus...they did a CT (neg), x-ray of the stomach/intestines (neg - no blockage) and an ultrasound (also neg). 5 bags of fluids and a week and I'm finally getting better but it knocked the pins out from under me as far as energy. Messed up my Afinitor schedule as I wasn't taking it daily and now I'm a little bit leery about restarting it as one of the SEs of Afinitor is diarrhea! See my MO tomorrow so I'll have a better handle on it...maybe. All comments appreciated!
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Gracie, I am praying for you!
Z, as always, Thank you for your kind support! I got this!
Lynne(50's), Your kind and thoughtful response touched my heart! You have such a beautiful way with words! You are so spot on regarding the mountains! I have 2 more to cross in the next week, then I can focus on me!
Piggy, Thank you doesn't come close to how grateful I am for your post! I read the links and I feel so much better! It could be anything, so I am backing away from the edge and focus on my tasks at hand and see my Mo on the 12th.
I wanted to share some info regarding Matcha Tea. I saw a couple of Dr's discussing it and I decided to try it. It has to say organic on the label and be from Japan to be the best stuff. It is great for inflammation and antioxidants and energy! I started drinking a cup a day and boy have I been feeling better! A lot less pain from overexertion and more energy during the day! Wow, I am hooked!
Much love and prayers everyday!
Claudia
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Claudia, if you are in FB it might be worth reaching out to Corrie Painter. She is with the MBC Porject And has angiosarcoma. I realize that is different than MBC possibly to the aorta, but she may have some helpful information about reading scans and what kind of specialists you could be looking I to
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Jengothis, Thank you for that info! I will open up my FB and see if I can teach out to her!
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Anyone experiencing (or experienced) way more tooth sensitivity after bone strengthening Tx or while on their current chemo regimen?
I just got back from the dentist because I've been having LOTS of temperature sensitivity in upper and lower jaws, and it's been getting worse in the last month and a half. I don't have any new cavities or lost fillings. Dentist thinks it could be a SE from the chemo. He's given me tubes of PreviDent 5000 Plus to brush my teeth with and apply to problem areas with a q-tip.
I practically passed out while I was chewing the cucumbers in my salad last night.
Chemo affects EVERYTHING: My eyes, my skin, my hair (and lack thereof), and now my teeth.
Fun, fun, fun.
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Yes Lita, I recently saw my dentist thinking I had a cavity but I didn’t. She said I’m brushing over enthusiastically, wearing the protection on my lower left side. I’m using sensodyne now and being very careful. I never had non-cavity related issues before Xgeva.
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Thanks, illimae, sucks, doesn't it?
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It does! More of the fun of cancer treatments, I am happy it wasn’t a cavity though. I have been through two brutal root canals and wish to avoid that at all cost.
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https://meetinglibrary.asco.org/record/161795/abst...
Results of a clinical trial at ME Anderson for bone predominant disease. Radium 223 plus hormonal had good results. Bone pfs almost 15 months.
Mary
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Hi everyone, I haven’t been on this site in a while, too busy living in denial! Well, I just had a pet scan and no more denial! I was wondering is anyone has had their cancer spread to the soft tissue around their bones? From what I can tell, it’s rare and I am freaked out.
Kim
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kwag, I had soft tissue mets from the get go in the muscles surrounding my spine and hips. They actually hurt MORE than the bones do now. I use a variety of rubs (MMJ cbd's), Voltaren gel, and Salon Pas patches. They help some, but don't take the pain away 100%...only make it tolerable.
Are yours painful?
L
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Lita57, thanks for responding. I am having pain and I seem to only be able to take the edge off with pain meds at night, ibuprofens during the day and a heating pad. I am hoping that radiation or a new treatment will help. Have you been offered radiation?
Ki
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ASCO info- Working the booth for Live By Living ths weekend and I have met two vendors today who provide direct to consumer liquid biopsy options to detect cancers. One for ovarian cancer screening and the other to do a full panel for $600. They want to offer these directly to patients so that patients can go over results with their doctors even when doctors don’t know why they should order the tests.
I also met someone from an organization that can get all our records, collate them, present them to a panel, and recommend appropriate clinical trials at no charge. The name of this organization is “Driver” and they are based in San Francisco.
Interesting stuff! More than 34,000 at the conference. Tomorrow I’m hoping to wander over to where the posters and presentations are taking place.
Hope everyone is having a good weekend!
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Hi girls, a hypothetical question - I’m on Ibrance and Letrozole for bones only mets. If I get progression of bone disease what can I expect in the way of further treatment in your experience
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Yes, Ive had radiation a few times to my back, and it has helped.
I can't be on my feet for very long bcuz i also have degenerative arthritis and some bulging disks in my back along w the mets.
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Leapfrog- I’m not sure...it seems like my onc discusses treatments appropriate for progression to the liver rather than more bone progression.
Does Bestbirds guide address this? Others will know:)
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Zometa/Xgeva is something to consider now in combination with letrozol/ibrance or with progression. Not fond of the stuff myself but it is an important tool.
>Z<
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Leapfrog: I think that I will ask my MO for Fulvestrant/Everolimus, if it comes to progression under Ibrance/Letrozol. The intermediate trial results are looking quite good. However, I am a bit concerened about the SEs. An alternative could be Fulvestrant/Abemaciclib (if approved in Germany by then) and then later on Exemestan/Everolimus.
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lwrite, I've just recently learned about Live by Living and am checking it out. Not sure how much hiking I'd be able to do with my arthritic knees, but maybe the YMCA/Rocky Mtn. Park in the fall would be my speed vs. the 10th Mtn. huts.
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Hi,
I posted back in April, that I had been diagnosed with a met in my left femur, after a biopsy and further scans it was decided to start chemo plus Herceptin/Perjeta, so far so good. My femur was sore after the biopsy where the orthopedic surgeon drilled two holes to retrieve sufficient specimens, but they assured me that there was no risk of fracture. This proved to be wrong, two and a half weeks ago my femur fractiured at the site of the biopsies without warning. So they performed the surgery that had previously been discussed: hip and proximal femur replacement and I returned back home Monday after one and a half week at hospital on crutches. MO is actually pleased, not about the dramatic circumstances, but that the met has been surgically removed. Chemo has been suspended until I have healed, but Herceptin and Perjeta continues. I now have to recover and train my new hip, and at the same time I am trying to get my head around what has happened....A PET/CT scan is planned in a few weeks, which is already filling me with anxiety - and the same question keeps popping up now: what will they find this time ?
How to manage scan anxiety?
Meja
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Meja, just take it one day at a time...that's the only way you can get thru this.
I have OVER 20 brain mets, and if I worried about every damn one of them (one of them is actually getting bigger), I'd go crazy.
We'll be here to help you get thru it, no matter what.
L
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Leapfog-When I had progression after Ibrance/letrozole, fulvestrant(with Xgeva) worked beautifully on my bone mets. it did not stop the liver mets, but rendered my bone mets well controlled and meant eligibilty for the Y90 procedure. Pretty sure Xeloda is getting the liver mets, but have not scanned yet. Best, MJH
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