Bone Mets Thread
Comments
-
GoKale, have you taken a covid test?
if it's a breakthrough covid case then your drs can try to get monoclonal antibodies. One of them is effective against omicron. It's in short supply in USA and being rationed for clinically vulnerable, like cancer pts...
Bummer about the plural effusion. It comes up on the lung mets thread if you need more info or support with coping with it
0 -
GoKale, a pleural effusion can be caused by many things, including mets or infections. Mine turned out to be from mets in the pleural cavity but I did not have other symptoms of illness like you, so it's possible yours is from an infection. If the fluid testing shows no sign of cancer, then you'll want to go to your primary care doctor to figure out what's causing it. I was having mild but odd lung/chest symptoms so I went to my primary care first and she thought maybe my symptoms were caused by asthma (new, because I'd never had it before). But she sent me for an x-ray which showed the effusion, and then I had a thoracentesis and fluid testing, which found cancer cells.
This was actually the first sign my cancer had returned. The CT scan I did next showed it in several parts of my chest and probably spine.
0 -
GoKale - are you at the end of your Ibrance cycle? More than a few months in the last six I have felt the same as what you are posting, thought it was Covid and took a PCR which was clean. It all inevitably cleared up right before I started my next cycle - MO said it was likely due to low neutrophil counts body was fighting something off that it otherwise wouldn't take that long to shift. However, given the instances of omicron, best to get that checked!
0 -
Hi GoKale, unfortunately, it sounds like you have a pleural effusion given the need to drain the lung. This is how my MBC was first diagnosed. However, the congestion, headache and phlegmy cough are odd. Perhaps pneumonia? I had a dry cough that would not go away, was fatigued and quickly winded but did not have sinus issues.
Mexhay, my bone mets don't show well on bone scans, possibly as they are slow growing. I would agree with GoKale - the emphasis seems to be on making comparisons from one CT scan to another although, at this point, progression is measured more in my liver (they simply note extensive bone mets on my CT scan reports these days).
0 -
The new suspected cite of bone mets on the upper femur (lit up with increasing brightness on PET, nothing on CT or xray) is confusing now. I had resigned myself to it being a met and needing to switch treatment plans; however the RO points out that the spot is in the field of treatment from previous radiation and should have responded as well. They're wondering if this spot is a stress fracture, not a metastasis. (Would a fracture light up this bright on a PET?) It's weird to hope for a fracture, but that's where I am. MRI in a few days. Hopefully we'll get some answers and be able to plan.
0 -
Two months ago I was wishing I had asthma! 😆 Cancer is definitely weird...
0 -
Thanks, everyone! I’m still hoping for the best. I’m planning on getting a Covid test tomorrow. I’ve joked that maybe it’s Covid because I might actually recover from that. (Lol about asthma, bone fracture, if it has to be something, let it be something we can recover from or manage).
Yes, I started off winded going up a few flights of stairs or walking up a long hill. I also felt like a sinus thing going on for a long time because I was so diligent about taking my allergy medicine and couldn’t understand why it wasn’t working. Then the dry cough.
My MO didn’t give me any reason to hope it isn’t lung mets. But the other curious thing was that when I went in on 12/27, I told him that the last couple of days, the right side of my face, upper lip, roof of my mouth and gums were going numb. So he got me in to have an MRI of my head. So very thankful that it came back clear. And I started taking a decongestant which after a couple days fixed the numbness problem.
0 -
My PET/CT scan interval is every 4 months. I schedule it for the same day as Zometa with labs prior. Lymphedema means one arm is off limits while the other has had so many venipunctures (especially during my 2 week hospital stay in 2018) that I am now a 'hard stick'.
I wake early enough to make and eat a good breakfast like a cheese omelet which will prevent my stomach from rumbling during the procedures since I'll get no lunch. Then my favorite phlebotomist at a smaller, satellite cancer center establishes IV access by mid-morning.
Around noon, nurse leaves the tubing/needle in place and wraps it up for my drive to the main clinic where radioactive imaging takes place. I don't think many of us need to worry much about extra radiation. After all, we are not likely to be alive long enough for it to matter…
0 -
There's no evidence that being at risk for or having lymphedema means you can't use that arm for blood draws, IVs, or blood pressure. Seriously. No evidence. The risk comes from injuries or infections, and the chances of a needle jab causing an infection are extremely tiny. I have mild lymphedema in one arm and when I know I'm going to get jabbed more than once in the same day, I use both sides with no problems.
0 -
Parakeets, veins are not visible in my chronically swollen upper extremity. Perhaps an IV team using special techniques could find a candidate blood vessel but it hasn't come to that. Once chemo begins I plan to get another port put in so this concern will be eliminated.
I wonder if you are familiar with StepUp-SpeakOut.org or the National LE Network Position Papers. My training as a medical professional leads me to trust the information and precautions they present. Your anecdotal experience is valid however only applies to you!
Having multiple unsuccessful needlesticks is not my idea of fun. I offer my methodology as a reasonable alternative to that scenario and hope that it might give another person an opportunity to think about possible approaches to a similar problem.
0 -
I'm not making it up based on my experience. I do what I do because of the research I've seen. Obviously things will be more difficult for someone who has severe swelling but that's a totally different situation than people who are merely at risk or who can use their arm but don't because of the outdated information. I shared what I shared because so many people still think their arms are off limits and they don't have to be.
0 -
there's a difference between "at possible risk of lymphedema" and actually having it already. I use my at risk arm all the time as it's the only one with viable veins for phlebotomy (phlebotomists here can"t touch the port) and when my port acts up
0 -
After this final post, I'm moving this discussion to the LE forum. I'll assume Parakeets refersto Ferguson published in 2016. Two years later Gillepsie said “as Asdourian et al. highlighted, there is a need for more rigorous research regarding precautionary behaviors prior to implementing practice changes."
Indeed, Nudelman's critique states “[two] studies have been widely summarized as debunkers of risk reduction behaviors, and a busy clinician, who typically has little to no knowledge of lymphedema, will read the headlines and start to place automated BP cuffs on at-risk limbs and tell women not to worry." Abbreviations substituted.
She continues “This deeply concerns me, because it is a vast oversimplification: At-risk behaviors can vary from a careful manual BP cuff placement or a highly inflated automatic cuff; from a careful phlebotomy or a lengthy tourniquet; or from a well-placed IV line or an extravasation of caustic material." Returning to bone mets…
0 -
True, moth! I was thinking of at risk people and those with mild cases. Obviously someone with severe swelling is different because it would be difficult to get to a vein at all, and would likely cause damage digging around trying to find one. I just like to debunk lymphedema myths when I see them. I read the original post to mean she was worried about lymphedema, not that she already had a bad case, so that was my mistake!
0 -
The discussion on lymphodema interests me. I do not have it. I had a simple lumpectomy of the left breast with no lymph nodes removed. Yet I’ve always gotten iv’s and blood draws from the right arm “just in case.” So I want to try to understand what is being said here. Does the updated, current information on this mean that I can get blood draws and IVs using my left arm as well? I mean, I am about eleven years out from having the lumpectomy.
i also request blood pressure be taken only on my right arm.0 -
From what I've seen, there's no evidence that avoiding those things prevents you from getting lymphedema. It's just a crapshoot.
0 -
I also avoided my right arm for blood draws as per advice I received but when I was diagnosed with MBC I asked my MO about this and he was clear that, at this point, there was little to no risk. I did have lymph nodes removed.
I believe it is likely prudent to avoid BP and blood draws from the affected arm for a few years post surgery but at some point the risk is negligible if there has been no appearance of lymphedema. I have repeatedly used my right arm over the last five years with no concerns (ironically it’s the arm with the good veins).
I don’t regret being cautious initially but am grateful that my MO gave me the green light so that I could avoid multiple pokes. While I am pretty much okay with blood draws, there is a part of me that seriously suspects oncologists are actually vampires….
0 -
Vampires! Hahaha. 😆
0 -
I had no issues with lymphadema or cording until 1.5 years after surgery, when we took a flight. I think the air pressure may have caused something, and I eventually needed PT to resolve the cording. After that I wore a special compression sleeve. I bring it up because sometimes these issues can come up later.
However, I agree with others that several years down the line with no issues, it's probably okay to have the occasional blood draw. So far I've avoided it, but there have been some miserable times with multiple unsuccessful pokes for IVs, so maybe one day I'll give it a try.
0 -
I really think the discussion about developing lymphedema might be better addressed under the lymphedema board as vlnrph suggested. There are quite a few ladies on there who have a lot of knowledge and resources on the topic. Personally, I developed lymphedema during my first bout with breast cancer in 2010 during all my surgeries and after radiation. I have worn a sleeve, gauntlet and nighttime sleeve since that time and was able to maintain my arm at just slightly bigger than my other arm and kept it stable for years all the while still saddling and unsaddling my horses and carrying bales of hay or feed. The recurrence I had in 2019 was in a lymph node and collarbone on the same side I had lymphedema on and it flared it up as did the radiation I had on my collarbone and I have never got it back down to the size it was prior to my stage 4 diagnosis and I am no longer able to lift the weights I could before without aggravating the lymphedema. I also started using a Flexi-Touch pump every evening to try to help control it. As stage 4 patients, we constantly are dealing with the possibility that another mets will develop somewhere in our body and couldn't that lead to development of lymphedema or maybe result from the radiation or surgery that we have to undergo? I am not sure but again, there are some pretty knowledgeable folks on the lymphedema board who might be able to help answer some of this or have contacts in the field that know more about the topic than we all do.
0 -
I just started a new topic on the lymphedema forum titled 'Abandon LE precautions? Not me!' In my case, the condition emerged within 5 months of ALND a decade ago, as noted in the biographical section of my signature. Like cowgal, I use a Flexi-Touch.
Nudelman's 2016 critique of Ferguson et al concludes “rather than state that no evidence supports risk reduction, clinicians should realize that vast clinical experience supports avoidance of unnecessary trauma to an at-risk extremity and supports true informed decision making". Her piece appears under the phrase Do No Harm…
In the information section of this website, the list of things to avoid maintains the traditional standard of care recommendations. These preventive measures are not myths. Personally, I do not enjoy giving my arm over to the vampires every month.
0 -
Ladies, I do realize this is the bone mets thread. I will look at the other threads on this forum that discuss lymphedema in more detail. But please know, I appreciate that the conversation veered of a bit from the main topic for a short while because I found it very insightful. Thanks again.
0 -
I do think that there are other risk factors that are involved in the lymphedema discussion, like diabetes and other factors. For me I had a bilateral mastectomy with bilateral axial lymph node dissection- radiation and I had chemo (A,C and Taxol through IVs ) years of Zometa IVs and PETs , many many blood transfusions etc and no lymphedema. As I said somewhere I don’t allow automatic blood pressure machines only manual.
I did spend years being afraid to get on a plane or do certain activities ( take a bath) until an RN said that it is the first few years where there is a risk. Anyway, I have no “good” arms and no one seems to address people like me- another “it’s a crapshoot”
0 -
Regarding that small spot at the top of the femur that was lighting up on the PET -- I was "hoping" it was a fracture but the MRI seems to confirm it is a metastastic lesion. I'm going to be starting radiation and Lynparza now that we've confirmed it. Just need to see if Lynparza can be taken in conjunction with the radiation.
0 -
Star2017 - I'm sorry to hear that. I hope the radiation zaps it good! I'm not familiar with Lynparza but hope both go well for you.
0 -
I am recovering from COVID, and I want to thank you for the advice to get tested and to get on the list for antibodies. I received the antibodies on Friday and felt better on Sunday. Still have a cough, low fever, etc.
I received a call from the MO’s assistant who called to push back my appointment a few more days to the 20th. I asked about the thorencentesis I had done on 1/3, and she said it showed cancer cells. So I will be getting new meds, but she wouldn’t say what, only that we would discuss it then ( like I have a choice).
When I went to Dana Farber, the doc there said I should get a guardiant test or foundation test done the next time I have a progression to see if there is a mutation in the estrogen receptors. I asked about this, and she said “ we have already done this, and it showed nothing “. I said no, that was before I started Ibrance and everything else, mutation can happen after taking these meds. She said I can discuss it with the dr on the 20th. The 20th will be 1 month since I have been off all meds.
I hate to go off of Ibrance because my bone Mets appear to be stable.
I wish there was an independent lab where I could get this test done. I’m thinking about seeing if the doc at Dana Farber will recommend a doc closer to me.0 -
Had an interesting appointment with my Onco orthopedist this morning. Some of you may recall that in April I had a right side hip replacement and a left side pin put in due to a combination of arthritis and cancer in both of my femurs. My right was about to break, and the left side wasn't far behind.
All looked good today, and I'm about to finish up on physical therapy next week. But he wanted me to get a nuclear bone scan. This is the test that, among all of the others, I absolutely HATE, and I told him so. So he suggested another alternative, that I'll have done in six months when I see him again, and I wanted to let you all know about it if you don't already.
He suggested what he called a skeletal survey. When I go to see him, they typically take X-rays of my femurs, my pelvis, my humerus bones (humeri???) before I see him. He said that this would be much the same thing as the bone scan, except that they would take X-rays of basically the whole skeleton (no nuclear injection). He said it takes a little bit of time, but that they could do it in their office, just like they do the X-rays that we do each time I see him. He also said that this is the preferred testing with multiple myeloma patients, so it's not unheard of with cancer patients and that he would be happy with that.
So I'm going to try that in six months. It just seems like it would be easier for me (although it takes some time) and it gets me away from that nuclear bone scan that I hate so much.
0 -
BevJen, I had a nuclear bone scan and then they followed up on a few spots with xrays (femurs and humerus) that they were able to tell if it was in fact bone mets in those areas (I had previous non cancer related trauma on my right femur that lite up). It seems that this method would work and not be so chilling, nauseating, and invasive like the bone scan.
0 -
why do you guys dislike the bone scan so much? I find it very boring but totally relaxing really. I just dislike how much of a time suck it is
0 -
I'm curious to know too! I've never had one so I have no idea what it's like.
0
