How are people with liver mets doing?
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Z. Is your new MO where you live or in Albuquerque? I'll ask today about Caris I am also in the MBC study at Broad Institute at MIT. I just got the boxes for swab and blood draw. I'll take them with me today. I know this one is just for research and won't get my personal information. But, I'm happy to contribute to the study.
Nina Glad you checked in. I think the procedure you will have is called an ERCP. My husband had one when he had a blocked bile duct with pancreatic cancer. The stent worked well for him and it was not a difficult procedure.
Rpoole. That does sound like a grueling protocol. Evidently, you are a tough lady.
Mom. No I did not have vomiting. I did have diarrhea and some odd pain in my shoulder blade area. Make sure they give her stool softener because with the second procedure there were so many meds that I got constipated and had a partial rectal prolapse. One extreme or the other!
My December PET will be ordered today. Why oh why do scans have to be done in December? I'd rather just focus on the fun Christmas celebrations. I'm sure my MO would let me push it to January.......mixed feelings on that. My birthday is on Christmas day, yes, Christmas Baby, so the whole month of December is extra fun for me. Of course, all Grandmother's know that this is the time of year we spoil our grandchildren even more than usual.👩👦🎄🎁🎅.
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Nina thank you so much for letting us know how you are doing. I also s/o that had it, he was an elderly person and that strategy gave him a big boost. Best wishes that this works really well for you. As Z said i hope they do it soon.
Grannax thanks so much for the info. Yes these SE are really scary, she cannot afford any weight loss. she is down to bones, she is 80lbs and 5'1. Interesting about the stool softner, i'll keep it in mind. She had an adverse effect to the Levaquin they gave just b4 the procedure, she had burning and got all red. Doc said i should remind him, he said he could see i keep eye on the details so i should make sure they all know about the allergy ( i don't like levaquin anyway, it has a lot of bad se).
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Wendy, it is a good thing they want a brain scan. Depending on the results the treatment plan may need to be changed to include a drug that crosses the blood brain barrier.
Had a CT yesterday and I am anxiously awaiting for the results to be posted to the patient portal.
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Dear Zarovka,
You seem to have a vast background in the biosciences, or at least understand WAY more than I do. I really like reading your posts. I asked my onc what my TMB was, and she acted like she had no idea what I was talking about. I told her what it meant, and she still didn't know. Wondering if I should be looking for another oncologist who does understand? I want to ensure I am being treated with the best, most advanced drugs out there, as I know all of us do. In your opinion, is there a better group of doctors who know more about metastatic disease?
Thanks again for sharing your knowledge here.
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Mom have you tried or talk to Dani’s MO about megace.
A few months ago I was down to 56 kg and megace helped getting my appetite back. I now weight 66 kg.
Ziz
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Hi Ladies, I need to catch up on all your news, but I am pressed with a question. I just had my scan results, but don't see my onco for a week but did talk to her on the phone. I forgot to ask her that on my MRI of liver (full of mets) it said I had increased T1 uptake from a lesion that likely hemmoraged. This is possible? When I talked to my onc she only mentioned some got bigger and some got smaller. Googling has not been helpful, does anyone have any experience with this?
Thanks! Harry's Mom.
Hello to MommyErin- I was also de novo Stage IV with two liver lesions. Goodness, I need to catch up on this board :-)
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mom. Dani had an allergic reaction to Levaquin? That certainly needs to be on her chart. It's an antibiotic, right? Why were they giving it to her right before y90?
I went to my MO today. We talked about testing. She uses Foundation One and always requests immuno histochemistry. I thought everyone here would want to know this. There were several other things she we requests, too. I had read here that Foundation One did not do that, so I thought all of you would want t know.
We decided to wait till January for PET. I'm glad, no scanxiety in December. Yay.
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Booboo - Your onc is not a specialist in personalized medicine, but I think you can get away with a mediocre on if you have a relationship setup with a major cancer center where you can go for a second opinion.The only time I am going to see a rockstar oncologist in NM is skiing in Taos. Sometimes we have to work with what we've got.If your onc. is generally paying attention and you have a good relationship, I would not switch. But that is a clear sign you need a second opinion at an NCI designated cancer center whenever you are switching treatments or dealing with ambiguous diagnostics.
Grannax - Basic immunohistochemistry is ordered and performed on all biopsies (except mine, alas. long story), usually by the local pathologist. Typically local labs can look at 2-4 immunohistochemistry markers with breast cancer ... ER/PR and HER2 and its friends. If you want to look beyond those markers, you have to go to specialized labs.
The technical specifications of the F1 test can be found here . The Foundation One test has no immunohistochemistry markers. Caris Molecular Intelligence looks at about 20 immunohistochemistry markers. Overall Foundation One looks for 300+ biomarkers and Caris looks for 600+. Does that matter for treatment options ... I am not sure. Since I am interested in immunotherapies I am interested in the Caris immunohistochemistry panel. If you are interested in really pushing genomics to drive treatment decisions, Caris would be the stronger test as well.
Foundation One is still a very solid test that has given me useful information. Doctors get used to certain tests and what they mean, and that is important too.
>Z<
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Whats a few days? you could have a New Year scan. Enjoy the season and your birthday. We are both Dec. babies ;-).
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Z. I'm so confused, now. I even asked her about Caris. I thought she meant she could request anything Car is would give from Foundation One. So now I wait. When I get it back I'll share it here. It's already ordered, so I'll leave it alone for now.
Jeenee What day is your birthday?
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My goodness, a few days away and this thread has galloped miles ahead of me. I'm so glad people were here to encourage Nina to get to a doctor when she got jaundiced. Sending good wishes to you, Nina! I'll post replies and hope they don't turn out to be obselete by the time I reach the last page.
Some aspects of Zarovka's scan story remind me of mine. During my second year on Ibrance + letrozole there were these areas of only slightly increased SUV in my liver that were hard to interpret. (Started Ibrance with all lesions dead or dormant.) We couldn't say for sure whether the lesions were slightly bigger, or it was just the margin of error with the CT part of the PET-CTscan. It took a whole year for size changes to show definitively on scans. So as for JFL, the SUV was important. (It turns out the CA 27.29 told the real story by slowly and steadily rising.) I had PET-CT every three months and a couple CTs with contrast near the end of that year. Those of you who know about imaging, do you think I should I have asked for liver MRIs? Robin's story seems to say so. But when I first started treatment the liver tumors went dormant very quickly, and only the PET could show there was no metabolic activity. Or does an MRI show the difference between active and dormant tumors? A CT would have shown tumors without showing they were inactive. The radiologists watching me for possible Y90 said MRI and CT w contrast were equally good. Should I schedule a meeting with a radiologist to discuss future scanning? It seems like for me TMs give the first indication of progression, then SUV, then lesion size. But I don't know how MRI fits in here. And of course we have to keep an eye out for any appearance of mets elsewhere. (By the way, my second opinion onc indicated that this slow progression is typical for when Ibrance is starting to fail.)
AnimalCrackers, I agree with you and JFL that a steady rise over several months should be investigated, regardless of the absolute numbers.
Zarovka, realizing your onc was not passionate about your long survival was a huge insight, and I'm so glad you are changing. Does this mean a new medical center? Bluebird, I hope things are going well at your new center. It is helpful to me to read here and understand that nobody has a perfect onc. Robin, you wrote that you like your onc for her compassion, willingness to let you lead, and ability to access trials. I have wondered in the past if I had the best I could get, but you know, she is definitely a smart and caring doctor and a nice person, and we have a great relationship. She is well-connected to other docs I may need. She or her NP know how to get stuff approved. She is has no problems with my many educated questions, no ego problems. The only thing I could wish is a little more thinking outside the box. But there is no perfect onc and the important thing is she says we are in this for the long haul. So thanks for helping me realize that, you guys. Wendy, will you possibly get a different onc?
Artist, I'm glad your body will get a chance to heal that neuropathy with the switch from Abraxane to Xeloda. We both have ILC liver mets, and I hope you get a great response too. Good point that A will still be in your arsenal should you need it later. Also glad your onc showed proper attention at your last appointment. Just don't accept seeing only the NP any more.
Kaylynne, I hope the trial works out for you! You'll get at least standard of care and maybe something better.
Lalady, I sent you a message but I'll just say here that your onc's thinking is making sense to me. Since you have some good options for when you finish Abraxane, save abemaciclib for later and go with Xeloda or Tamoxifen. Tam would give you a really nice break, I think. So glad the jaw met is responding well, but shaking my fist at the universe for the cracked rib, which you so do not need.
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Momall, you and Dani are an amazing pair. Would love to see a photo of the doggie she gets. That sounds like great therapy. I watched a webinar about the latest in bc research and treatment, and the expert speaker said that the combination of neratinib and faslodex is better than either one alone. So Dani's onc is up on that.
Robin, Willy is so cute he broke the the cuteness meter. Sproing!
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Dec. 30th
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Dec. 30th
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Grannax - There are many many people on this forum who have got useful actionable information from foundation one, including me. The marginal benefit of testing another 300 biomarkers is not clear or proven. I am sure it is not 100% better because Foundation One covers all the commonly actionable biomarkers.
Nonetheless, there is a solid technical argument for Caris if you are in a position where you have a choice. Foundation One is more common because the marketing and outreach to doctors is better. That marketing/outreach is not a small thing ... oncs were not trained in genomics back when and F1 is obviously providing good support to doctors.
I can write another long post about why the whole business of genetic testing is problematic but one easily understandable issue is the heterogeneity of tumors. If you take 5 samples from the same tumor on the same day and send it to the same lab, you will likely get 5 different results. Not completely, but they will often differ and sometimes by a lot. Tumors can have widely varying genetics. In some sense there is no target for targeted therapy. I still do it and consider the reports when making treatment decisions. But the difference in efficacy of a drug for cancer with or without a mutation is often not that great. My point is that a genetic test that looks at 300 markers is probably fine, given the limitations of the tool.
>Z<
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Hello everyone I see many known faces here! I’ll read the previous posts later I just wanted you to know that I’ve progressed to liver mets after 4 years of bones only. The biggest tumor is 1.4 cm x 6.5 cm and it grew from the last scan. The findings say there are “multiple “ lesions. Leaving Abraxane on to Gemzar. If any of you can help me find the best thread on Gemzar I’d appreciate it if you guide me there.
I’m not surprised about the location there were always small shadows there but what got me off guard was how fast they’re growing and expanding. I had a CT scan on September and one last week and there was growth.
Fortunately I have no symptoms for neither the bone or the liver mets. Any and all advise welcome.
Aurora
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Hi all,
I'm wondering if Z and other research-oriented folks have any thoughts on Tempus genomic testing vs Foundation One and Caris? Mayo Clinic in Phx is using it for my SIL, but I don't think I've seen it mentioned on the boards.
Also has anyone received any targeted treatment for a Cyclin D1 amplification? Thanks!
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Openmid The big research centers have their own tests and panels. They are all very interesting and have their purposes. If I were at a big research center, I would go with their genetic test panel. 600 biomarkers is one thing, knowing what to do with the results is another. The research centers test for the things they are interested in and ... know what to do with. MSKCC, for example, has a cool panel, needless to say.
Shetland - Elizabeth on Inspire has ILC and swears by CT with contrast ... and a particular radiologist who can see the sheets that ILC forms in this diagnostic tool. ILC is different.
MRI is over. Meeting with radiologist at 4:30 to discuss MRI and other matters. Whoever said keep your eyes closed thank you. Whoever said oil rig in a disco, thank you. I was well prepared. They needed me to hold my breath for 20-40 seconds at a time, multiple times. With the stress that was hard. Wish I had had a chance to practice before. But they said I did GRRREAT!!! Techs are always so peppy.
Cried at minute 60 in yoga today. I am struggling to reach my onc to get the order right for biopsy on Monday. I don't feel I should have had to work so hard to get care. I am just furious. She can charge $300 for a 20 minute appointment and not answer an email to clarify how much tissue will be taken (we were short last time). Nice work if you can get it, lady.
First meeting with new cancer center moved up to Monday 8am. I meet with a dedicated MBC nurse practitioner to review my medical records for completeness. (goodness??!!) She has given me her private number and answers the phone every time I call. I could have seen her today if I wanted to. At my current clinic the soonest appointment available to see a NURSE is mid-December. If I want communications sooner on a medical matter I have to put my medical questions on a post it at the reception desk and hope to god it makes it to the doctor.
No perfect oncs, but I believe one can do better than what I am dealing with at the moment.
>Z<
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Hi everyone, I don't post too often but I'm finding myself feeling really overwhelmed right now. I have burned through 3 treatments this year after 2 years on Ibrance/Letrozole. The latest scan showed a couple more spots in my liver and spots on my bone that have reappeared. I have been on xeloda, faslodex and gemzar this year. Taxotere/AC then tamoxifen at initial diagnosis 5 years ago. Looking at clinicaltrials.gov makes my head spin, so many to choose from. For those who look for clinical trials, does your doctor do the recommendations or are there resources that you go to find out which trials look promising? Also has your doctor ever prescribed an anti estrogen treatment used oreviously a second time around?
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Jeenee. Five days many years apart! I'm assuming you are much younger than I am.
Z. I'm so sorry everything is so blasted hard!!! It's like pulling teeth or worse because pulling teeth won't kill us. Grrr. Thanks for your explanation about testing. I feel better. I think that's plenty for me. My MO is young and I like her. She seems to seriously care about me. She's recommended smart treatment for me so far. It's a good place for me to be.
I hope , somehow, all goes well for your BX on Monday Z.
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Hi Z,
Thanks so much for your response. My understanding is that Tempus is not specifically in-house to Mayo, it's a separate company working in conjunction with numerous medical centers. Here's a link: https://www.tempus.com/ I was just wondering if you thought it was comparable to Foundation One or Caris. Thanks again.
I'm so sorry to hear of your frustrating experiences. Wishing you much better treatment with your new group & good on you for making a change! Thinking of you and wishing for an easy and effective biopsy procedure.
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bc711 -I'm so sorry you are feeling so overwhelmed!
Guess I can relate, as I am at a treatment crossroads myself.
Yes - I did go back on another anti-estrogen drug a couple of years after arimidex stopped working. Exemestane was part of a clinical trial I was in, taking: Ribocciclib, Everolimus and Exemestane. It seemed to be helpful after being off hormonal manipulation for more than a year.
Overall, I did really well on this trial for over years. Then I experienced progression. When this happened, I was taken off the trial.There are 3 drugs in the trial, so not too sure how much of a part an estrogen receptor mutation played. This was discovered by my Oncologist when he ordered genetic testing for my tumors.When this happened, I was taken off the trial.
I learned about the trial and the next one I will be staring, from my primary oncologist. FYI, I think there may still be open trials with this drug combination. https://clinicaltrials.gov/ct2/show/NCT02732119 in case its something you want to learn more about.
Best wishes with your new chemo.
- JeeNee
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Hi Grannax -
I'm 50. Its a magic number ;-)
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Zarovka,
Congrats on getting through the MRI!
I hate to hear that your physician was not responsive in a timely manner about the the biopsy. This is part of her job and you deserve timely communication - especially about a matter that could be this important.
- JeeNee
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Hello new to the liver threads I have a question. I’m supposed to have a liver biopsy and I didn’t thought of asking if this is outpatient procedure or hospital stay. I have a consultation appointment on the 29 th and I would like to know what questions to ask. I thank you in advance for your help.
Aurora
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Openmind. I looked at Tempus and holy guacamole. "Our labs sequence both DNA and RNA from tumor samples as well as matched DNA from normal samples. Sequencing options include a targeted panel of ~600 genes (at 500x coverage), an onco-seq panel of ~1700 genes (at 500x coverage), whole exome (at 150x coverage) and whole genome (at 30x coverage)." On the one hand, the test is very focused on genetics and doesn't get into immunohistochemistry. On the other hand, the scope and depth of the genetics looks research level. That is what I was expecting of a MDAnderson "in house" test. Most of the major cancer centers have their own go-to genetics test and they are generally Caris level or beyond. Caris is just the best thing I have access to from scenic but rural Northern NM. Or at least as far as I know. I love to be wrong ... interested in other options ...
Bc711 - There are services that will match you with trials. One that specializes in immunotherapy is cancer research institute.One that matches you with the best trial is emerging medicine. Some trial matching services you pay for but these are free and well respected services.
The other thing to go is to find a NCI designated cancer center near you, go for a second opinion and ask for referrals to trials. All these centers have trials and a system to match people with trials.
Finally, you can't go wrong contacting the immunotherapy group at the NIH in Maryland run by Dr. Rosenberg.They will assess your suitability for all NIH trials, and the NIH trials are generally cutting edge. NIH is nice because they are comfortable with people who don't live in Maryland. Many trials won't accept people outside their cachement area.
Auroya - liver biopsies are outpatient. I am having one on Monday and I'll be home for dinner. I will be sedated and my husband has to pick me up. Ask what tests they are going to do with the tissue and what lab is going to do them. I can't remember your specifics, but genetic testing can be helpful at certain points, depending what treatment options you are choosing from.
Jeenee - Thank you for your kind thoughts. I am a fighter but I am so tired of fighting for quality care. It's a royal pain to switch oncs ... more work. But I am so hopeful this new team will take some of the load off me.
All - I had an interesting meeting with the interventional radiologist today. Many of you know I had a whole boatload of mets appear in my liver in September. I was on Ibrance and letrozol, first line treatment, when the scan found 20-30 mets and 20% liver involvement. (For those of you following my drama, we dialed down the number of tumors and the amount of liver involvement looking at scans today.) He's a young doctor with very recent training in TACE. We came to the conclusion that TACE would have been a good option for me once progression appeared on Ibrance and letrozol. Particularly with progression that extensive, but even with fewer mets it would have been a good idea.
It is a very interesting idea to do TACE or Y90 after progression on Ibrance and letrozol if the progression is primarily in the liver. After TACE one could try going back to hormone suppression. Chemo is one of the things that can cause the cancer to respond to hormonals again. TACE/Y90 used to be considered a late stage hail mary, and it still works at late stages. But these procedures probably should be used earlier than we are seeing. It is brilliant to consider them as a second line treatment. They could replace Xeloda as the go to treatment after hormonals fail.
When I suggested to my onc that I investigate TACE and asked for a referral for a consultation with the IR, she said I wasn't a candidate because of too many mets (not true). Also she had it confused with ablation. I insisted, pointing out she might not be au courant of the current thinking and she begrudgingly referred me. (We get along in our way.) Many of us find ourselves with imperfect MOs. I mentioned my experience because I suspect most MO's have no idea how to most effectively use TACE. I've never seen TACE suggested as a second line treatment but it makes a lot of sense.
We're all looking for options. If you haven't considered TACE or Y90, I suggest requesting (and demanding if necessary) a consultation with a forward thinking interventional radiologist, ASAP, regardless of your stage. These procedures are something all liver metsters should have in our pocket to deploy ... TACE can be done 4-10 times depending on how the veins into the liver hold up.
I am still learning and I can't say whether Y90 or TACE is "best". There are arguments on both sides. TACE is a single treatment/procedure where they run chemo into your liver through a vein in your leg. Y90 is sorta the same thing but it requires two procedures. They map the liver on the first visit and on the second visit they send radiactive beads or something (anyone can jump in and fix my errors!) into your liver through the same vein. My understanding here lacks it's usual detail and depth because I start blacking out when they talk about running anything through a vein in my leg.
We have people on this forum much more familiar with the actual procedures.
>Z<
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This thread moves so fast. Hard to keep up day to day.
All of the dialogue about MOs - not being perfect but serving a good purpose for us - has me thinking. Maybe I am expecting too much from mine. Each MO is a mix of skill, experience, passion, open-mindedness, respect for the patient, bedside manner and personality, etc. No one is going to be a 10 out of 10 on all of those. I need to keep that in mind and remember how frustrating my prior MO was who had a major ego and zero open-mindedness. I have it pretty good now, when I put it all into perspective.
Z, I hope you hospital gets the biopsy order right this time. I, too, have been questioning which would be better Y90 or a specific type of TACE called DEBDOX. Another consideration I have been floating is metronomic therapy. I found some old posts where you had discussed it. I am looking for people who have actually done it so I can learn more and am having a hard time finding any.
Shetland, I am in the same boat as you, I just don't know how MRIs fit into the mix. I don't have enough information to have an opinion at this point. I need to learn more. I do recall I had a breast MRI years ago because it could better display changes in dense breasts. It definitely is more sensitive than some other scans. With ILC, you are certainly in a unique boat since your buggers can be sneaky.
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Aurora, liver biopsy is outpatient. Mostly done with sedation but some on here have had it with only local anesthesia.
I have PET in the morning and feel super nervous! First scan on Abraxane.
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JFL- sending you positive vibes for your scan.
Aurora-I've had a few liver biopsies All were done under mild sedation as an outpatient. They were actually easy for me-thank god!
For the first time since I was dx with MBC, I am really having issues. Throughout everything I've been very lucky-no symptoms until the numbness in my rt ankle, back of my rt thigh, and rt buttock. Yesterday I finished rads (10) which I found very hard-exhausting plus now I have really bad pain in my rt lower back, hip and rt shoulder area. I've taken my first pain pill since my radical mastectomy. This is hard!! I am also bloated-probably due to constipation. I am getting some stomach cramps-again I'm assuming from the constipation. This week I had blood tests and my liver numbers are up. ALT went from 33 to 49 and AST went from 27 to 36 Due to rads I've been off all other treatment but before I went off them, my CEA and CA15-3 shot up. I'm getting scans on Tuesday and leaving for my DD bday in Paris the next day. I go back on the GDC 0077 this Monday. I already spoke with my MO in case the scans are not good and if that be the case then I go back on Halaven. Not happy about that but what bothers me most is how I'm feeling. What are some symptoms other have had from the liver mets?
Babs
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Z interesting consult w IR. I didn't know that Chemoembolization could be considered a second line treatment. I think that's smart thinking. Someone said it could be done numerous times, that's amazing. Does anyone know if it can be done simultaneously with an IV chemotherapy?
Jeenee. I hope 70 will be a magic number for me.
Babs. I sure didn't have any symptoms from liver mets, scary. My numbers never, went up either. But, I did have this odd referred pain after y90. It was in my right shoulder blade area and shoulder joint. It was sharp pain and it also hurt to take a deep breath.
Where did you have your rads? To your bone mets, I'm assuming. Do you think this pain has anything to do with you bone mets locations? It sounds, like something is pressing on a nerve in your lower back and causing the pain in your leg and foot. Just a guess.
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