Bone Mets Thread
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I was an avid practitioner of yoga until bonemets in lower back. I no longer do core postures as well as some other exercises because of compression fracture.
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Thank you BevJen, that's almost exactly what my CT report said, with the exception of suggesting an MRI. My next appointment isn't for 2 more weeks, I don't think I want to wait that long. I wonder why my MO hasn't mentioned it, I love him to death but shouldn't this have been caught and mentioned already?
FYI for the ladies, if you don't already, always get a copy of your scans, MRI's, CT's, everything. Doctors are human, they have a lot of patients and can miss things.
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BigPeaches,
Who knows why docs do what they do? I have found that we need to be more than persistent in our conversations with our doctors. Last October, I had a CT scan to check on how I was doing on Ibrance. There was some gobbledegook in the report about my bones, and the NP at my cancer center flew into a panic -- there's been progression! We have to change treatments! Meanwhile, the CT said that the liver lesions, which are the thing that could actually kill me, were looking better. When I questioned the NP and then the MO about that, and said -- isn't this what we should really be looking at? -- they looked at me like I had psychic powers. And then they agreed.
I also think that one of the reasons they don't like to look too deeply into scans is because if they need to order more, or a different type, in some instances, it can result in a lot of work for them in getting insurance approval -- granted, that is a pain for the docs, but it's our lives, and so they should have to suck that up, in my opinion. What happened to the medical code of "first, do no harm"?
I probably wouldn't wait for two more weeks, although in reality, it's not likely that anything will change that quickly (although it could). I'd get on the phone today. Just my opinion.
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I heard back from my MO, within 2 hours. He said that because it's so small (6-7 mm) there is nothing we can do but watch it, he said it's too small to biopsy. I don't like the "wait and see" approach but apparently there isn't anything we can do about it for now. If it's any bigger in my next scan, I'll demand an MRI.
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I too have a lesion on my liver, also lungs and bone mets. Since I'm on drugs for mets, does it really change the treatment depending on where they are? My MO has only recommended drug treatment so far. (Started mets treatment in bad way - toxicity from 2 different drugs that I had to get over the SEs before going with what I'm on now.) Will have 3 month CT in a couple of weeks to see if this is helping.
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Would bone mets pull down hemoglobin and RBC count, but not platelets and neutrophils? My wife is experiencing anemia and the cause is yet unknown.
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Husban11- when I was first diagnosed with bone Mets my hemoglobin was 7.5 and platelets and white cells were normal. I had extensive bone and bone marrow Mets. I had a blood transfusion which got me to 9.4 and I meandered around that level while on Ibrance. It is 11.5 on AA.
you said they were going to do some endoscopy to look for oozing somewhere. That’s good. There are other causes for anemia like thyroid disease and celiac etc, but they’ve probably already checked for that stuff. 7.5 feels crummy- so I am glad she got a transfusion.
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Husband11, "normal" bone mets do not generally affect blood counts. However, relatively rarely it is possible to have symptomatic bone marrow involvement, which does lead to low blood counts (cytopenia). In some patients bone marrow involvement leads to anemia only, without affecting platelets and neutrophils. It is usually treated with, and tends to respond pretty well to chemotherapy, leading to normalization of RBC levels. I'm hoping there is an explanation for your wife's low RBC count that is not caused by cancer, but rather by an easily fixable issue, but if it is cancer, it's no more ominous than any other progression (however meager of a consolation that may be)
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hi!
Husband- maybe I am stating the obvious here so please forgive me if I’m missing something...but Ibrance will cause the RBCs so get all wacky.
Not sure if this helps, but here’s some pics of my CBC results. Looks this way since I started Ibrance. In fact, the MOs can “know”’ whether or not we are being compliant patients and taking our Ibrance by how the MCV and MHC numbers get higher with Ibrance. Apparently this is very healthy looking bloodwork for someone with a cancer diagnosis and on treatment...
Hope this helps! Hugs, philly
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Hi Husband,
Am I reading the history correctly and your wife is no longer on Ibrance? As Philly indicated, Ibrance can definitely affect he RBCs and Hb independently from the platelets and neutrophils. I had to stop Ibrance due to severe anemia - my red cells and hemoglobin kept steadily declining to the point where a transfusion would have been required. This was after dose reductions and despite the fact that my neutrophils were fine. Now I’m experiencing something similar with Verzenio. It’s not at the point that we need to make a decision yet but there seems to be a steady march in the wrong direction! And now my kidney function numbers are going wonky as well. Yeesh! Hope things turn around for her.
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Piggy, what is "symptomatic bone marrow involvement"? I have bone and bone marrow mets and have since diagnosis with MBC early in 2017. I was initially diagnosed with BC in 1991, 26 years earlier. I have no bone pain at all so far, though my mets are described as "extensive" and throughout my skeleton. Is there a difference between just "bone marrow involvement" and "symptomatic bone marrow involvement"?
Thanks-
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LoveFromPhilly...my labs are almost identical to yours except my platelets are in the normal range. I get my blood work done every month after my week off.
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My wife has been on ibrance with letrozole for 2 1/2 years now. She was very quickly reduced to the lowest dosage, 75mg, which has held the cancer stable. She has had the flu for the last month, so she took the last two weeks off ibrance. It would appear that her hemoglobin has continued to fall despite the break from ibrance. She has restarted ibrance today as her onc gave her clearance to restart. Despite the low hemoglobin, she is feeling much better these last couple of days than the prior 30 when she was sick. It was a stomach flu, that had her guts rumbling continuously, and making it hard for her to eat much.
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Philly, thanks for posting some of your bloodwork results. I found it interesting. I was able to compare my most recent blood work to your numbers and they are actually very similar. I am currently on Verzenio and Exemestane. The only big difference was in platelet count where mine were about double what yours are.
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Joyner, the medical journals seem to use the term "symptomatic bone marrow involvement" when there are signs that the cancer is preventing the bone marrow from performing it's function, specifically generating blood cells like erythrocytes (red blood cells), leukocytes (white blood cells) and thrombocytes (platelets). This usually only happens when a substantial portion of the bone marrow is replaced by cancer, which is quite rare.
The prevailing theory regarding metastasis to the bone is that the cancer cells first settle into the marrow before getting to the bone itself and generating bone mets (that's why metastasis to bones in hands and feet is rare, as those bones have virtually no marrow in adults). As a result, most patients with active bone mets have some level of bone marrow involvement, but as long as the marrow continues doing its job, it would not be "symptomatic bone marrow involvement" (although there could be symptoms of the bone tumors themselves, like pain or fractures).
Husband11, it is possible that the low RBC/hemoglobin counts are a lingering effect from Ibrance, especially if your wife has been sick and not able to eat much. However, if it doesn't improve now that she's recovering from her viral infection the doctors should continue to try and find out what's causing it. An internal bleed would require different management compared to bone marrow progression.
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We just got the results from her two tumor marker tests, and both tumor markers are lower than before. And this is after taking two weeks off ibrance as she was feeling ill and thought she needed a break. Odd that the neutrophils, platelets and tumor markers all improved, but her hemoglobin is lower. All I can think is that either something is suppressing RBC production, or she is bleeding internally. The suppression could be due to treatment (although that seems unlikely after 2 1/2 years of stability on ibrance), bone marrow infiltration by cancer (but why are her tumor markers falling again?), cytokines from inflammation (cause? infection, flu, ????). She just had an endoscopy and they told her she did so well that she didn't need to come back for a year (they were monitoring it every 3-6 months). Now, they want to do both an endoscopy and colonoscopy. Good thing they are actively looking into it.
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Piggy, endless thanks for your reply. You are obviously very knowledgeable, and I'm most grateful.
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Happy to share! I think it can definitely be helpful to compare and contrast. Thank you Jack5ie and Devine for sharing how we are similar and different with our blood work. It helps!
My platelets have always been low...I do not know why. My MO doesn't seem concerned. There was one point in time when they seemed quite low to me and he said that we would "keep an eye on it." Per his usual, none freaking out type of response
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Hi Philly,
Interesting comments about the MCV/MCH. Mine never really wavered when I was on Ibrance and I was definitely taking it as prescribed (started at 125 mg and then dropped to 100 mg). I also find it interesting that there is variation between what is considered "normal range" for some measures. In particular, I noticed that in the US they consider 1.4 to be the bottom of normal for neutrophils and here it's 2.0.
My numbers look quite different on Verzenio. RBC below 3.0, hemoglobin below 1, hematocrit outside of normal. And yet my platelets are fine and my neutrophils are 1.8. Go figure?
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Husband11 , I am glad the doctors are looking into the causes of lower RBC. I was in a similar situation 4 months ago, when all my blood counts were low. After a shot of Nupogen , everything came back to near normal except the Hemoglobin. It had dropped to 6.
So the GI doctor did a colonoscopy and ultrasound of the abdomen. Everything was normal, So my oncologist ordered two pints of RBC infusion. My RBC counts have been better since the infusion. I have extensive bone mets, which can also cause low RBC. Ibrance and other CDK inhibitors does affect the blood count in some people.
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My wife's platelets are perpetually low because she has an enlarged spleen, as a result of the hepatic hypertension she experienced when she was first diagnosed with metastasis, and then treated with xeloda. It seems to cause a reaction in her liver, resulting in blockage and hypertension, which permanently enlarged her spleen, leading to more trapped platelets.
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Husband11, my RBC has been low for 2 years because of bone mets.
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Question about nuclear bone scan:
I have my first bone scan and CT scan next month. The written directions state to drink 32 oz of water about 45 mins before appointment.
If anyone here has had similar directions, do they expect me to drink 32 oz of water in just a few minutes? It takes me a long time to drink a 16.9 oz of bottled water. Am I supposed to glue, glue all that water and the slosh to the CT scan??
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hi dodgersgirl - I have never had those instructions and I have had a lot of bone and ct scans. I do get told to drink a lot of water AFTER the scans to flush out the radioactive dye from my kidneys. If you find out more info, please let us know
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Hi Dodgers. I am typically told to drink 1 litre of water before the scan, in the two hours before the scan (fasting otherwise in that time period) then a similar amount in the time after the CT. I have also been told by techs that hydration is not necessary before the scan for the type of scan I am having but I think they send out standard instructions just in case (scans of the bladder, for instance, require that it be full). I don’t second guess as hydration helps minimize the impacts of the contrast on my kidneys.
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They have me drink some kind of clear (taste free) contrast before my CT scans. 10 oz 90 minutes before and 10 oz 30 minutes before. This next batch of scans will involve the nuclear injection before the bone scan, drinking the contrast, the IV that makes you all "Warm down there" and the gadolinium contrast injection for the MRI - None of it is very healthy, but we get amazing pictures :-/. My veins hurt just thinking about it!
Have you ladies had other odd health issues popping up since you've been on treatment? I've memorized the call director speech at all the doctor's offices. It appears everyone's call direction has "Changed" so I need to pay close attention during my 15 minute wait...
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Sandiesservant and lwrite—. Thank you for sharing your experiences with scans.
I will be at the Infusion center tomorrow so will ask MO’s nurse to clarify directions.
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lwrire, yes to odd health issues but I think most of them are treatment related. Verzenio, for instance, appears to be causing.... wait for it... bloody sinuses, mouth sores, low RBCs and as a result low Hb, potentially reduced kidney function, weird headaches (likely due to the low Hb), severe cramps, nausea, diarrhea, shortness of breath (again, pointing to the low Hb).... to name a few! 😳 But, my last scan was stable...,
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The feeling like you just peed all over the table during a CT is so weird! I even know it's coming and still swear I did LOL
During my last CT, I drank the stuff, then promptly threw it all up in the hospital bathroom, it didn't seem to make a difference when I told them.
Cancer is a fun time isn't it? sheesh.
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LOL! And we can even shrug off throwing up! Of course this is the only group we can laugh with about these ridiculous things. Still...it's good to laugh
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