Bone Mets Thread
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Hi Jo.
I'm somewhat in the same boat, although I have only had one treatment to the sacrum/lower back and one to the hip/groin. I was treated for the hip pain last fall and had quite a bit of relief but the last month has been miserable. I had been feeling great and then all of a sudden, my hip and groin started to get increasingly painful. What I find the most disconcerting is the referred pain which, quite frankly, feels like a vaginal tear. It's a very unpleasant sensation.
I've upped my pain meds which is keeping me mobile but am also trying to stay off of my feet while I wait for a CT scan (scheduled for Saturday). The funny thing is, even with increasing bone pain previous scans have come back as stable disease. Good news for sure but it's hard to feel confident when you have to keep knocking back the Tramacet to keep things to a dull roar!
Hope you find some answers and treatment options soon.
Pat
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Hi all - Has anyone experienced vomiting while on Zometa?
I had my first Zometa infusion last Friday. First symptoms were an almost 102 degree fever over the weekend, which I had kind-of anticipated thanks to you ladies on this thread, and then a very bad headache. Both were gone in a couple of days. Then last night, I ended up throwing up all my dinner (a few hours after dinner) and then had terrible diarrhea in the middle of the night and this morning. It was to the point that it was like water gushing out of me. I took Imodium this morning and haven’t had any more diarrhea since (yet.) Now I just vomited up lunch. I’m actually hoping it is the Zometa as I have stomach mets and I don’t want to even think it relates to that! Vomiting can be a side effect of Zometa but does it make sense that it didn’t start until Day 6 after infusion?
Thanks in advance for your insight.
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southernsurvivor I had vomiting on day three after Zometa infusion for my first two infusions. I also had the headaches and was really tired the day of the infusion. I spoke to my nurse about it at my third infusion and she suggested taking Tylenol as soon as my infusion was over. I have done that the last two times and the only side effect I've had is the tiredness. Good luck
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i've been told to take benadryl an hr b4 zometa infusion to minimizes se's, and haven't had any problems since. But as we all know, everyone is different.
Southern, could it have been a touch of the flu? When my zometa se's were at their worst, it only lasted foe a couple of days. L
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Hello all,
Had my appointment for scan results yesterday and MO says I'm stable! I'm happy with that!
Oh and I might have gotten married on Tuesday! My husband and I are spending a few days in Niagara Falls NY! Had a great night at the casino last night, and headed to the pool now!
Have a great weekend everyone
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Hello all,
Had my appointment for scan results yesterday and MO says I'm stable! I'm happy with that!
Oh and I might have gotten married on Tuesday! My husband and I are spending a few days in Niagara Falls NY! Had a great night at the casino last night, and headed to the pool now!
Have a great weekend everyone
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congratulations Sherry!!!! So many reasons to celebrate!! So happy for you! I hope you have enjoyed your honeymoon. I’ve never been to niagra falls but it sure looks incredible in the pictures and on tv :-)
Southern - sorry to hear about your upset tummy
I get Xgeva shots. Started out at once a month and then switched to every three months after a year. I would have a migraine and flu-like symptoms in the first 3-5 months (I can’t remember exactly) of getting the injections. But I also was receiving lupron at the same time, so it is hard to differentiate what was what. My MO did tell me to take an anti-nausea prophylactically on injection day as the shots can cause nausea. So I still do - once a month, I take an anti-nausea about an hour before the injections.
I do believe my body has adjusted to the medications and I probably don’t need the anti-nausea anymore but I still take it anyway just in case!
It does sound like you are either reacting to the medication or you have a GI bug - and there’s tons going around right now. Make sure to take your temp and if it is above 100.5F, then call your MO and let them know!
Feel better!
Love
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Southern, A few years back,people would occasionally post recommendations for Zometa infusions to this thread. I haven’t noticed any lately, perhaps because xgeva has become more popular. I am sorry that if you did not know about these tidbits of advice before your first infusion since the worst reaction usually takes place then. Reactions to subsequent infusions are usually less severe. Here are the recommendations ( sorry they are late).
1. Most important -Make sure the infusion is set to take at least 30 minutes. Some centers do it in 15 minutes, but experience by many people has shown that the faster infusion causes more SEs. Don’t be afraid to tell the nurse. I have found that they are more than willing to accommodate the request.
2. Be well hydrated. Drink lots of water the day before, the day of, and the day following treatment.
3. Take Tylenol the day of and after the zometa infusion.
4. Many people take Claritin the day of and following treatment. I have never done that, but many people swear by it.
I hope your next infusion brings you less pain and suffering. We have enough to deal with!
Hugs and prayers from, Lynne
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Hi! I don't post often, but something came up that I thought would be important to share. I have been on xgeva for over 5 years now. This time last year I started having a pain in my right femur shaft. It showed up as a hot spot on a full body bone scan as well. Also had an MRI. The cortex was irregular and there was swelling, like a stress fracture.Went to two different Orthopedic Oncologists who both said it was probably from the xgeva, but were not certain. I was taken off of it for 6 months.In the mean time,before the follow up, my left femur shaft started hurting. Xray was taken and looked just like the right. femur shaft. At this point, they were more certain it was the Xgeva.
Because I was off of the Xgeva for 6 months, the femurs had time to remodel and heal. I am back on it, but need to follow up. I may have needed to get rods in both femurs to prevent a full fracture! this is an odd side effect of Xgeva-Atypical femur fracture. be on the look out!
If you are on Xgeva and your femur or hip starts hurting get an xray or scan right away!!!
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Hi, I am new to bone mets and wondered if anyone has any insight into how and which pain killers to try or avoid as long as possible ? My pelvis area is really painful. Any other tips for pain reduction. I have used an ice bag a bit but that is not possible all the time
Thank you
Hugs to All.
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hi Daylily....I'm using a 12.5mcg Fentanyl patch that I replace every 3 days....it doesn't completely cancels the pain but it allows me to be functional without suffering from the numerous side effects of the other pain killers I've tried. Oxicodone puts me to sleep for example and constipates me.
Over the years, I forgot to change the patch twice, but usually after a week my lower back pain reminds to do it, so I have found the fentanyl to be non addictive...I don't really understand what all the negativefuss is all about....
But, the most effective way I've found to deal with bone pain is to reduce inflammation by ingesting a good amount of quality Omega 3 fatty acids and other antioxidants.
Another suggestion for wide spread pain—which used to plague me— is to bathe for 20 minutes in a hot bath in which 5 to 6 cups of Epsom salts have been dissolved.
I hope these remedies work for you as well.
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Daylily, will radiation oncology provide treatment to the painful area?
Fentanyl patches are very useful but may not be first line therapy. Oxycodone is another potent narcotic so be sure to take stool softener and/or senna in order to avoid constipation. Perhaps a hydrocodone/acetaminophen combo would be sufficient and not require a new prescription to be written for every refill. Tramadol could be an option.
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Ladies - Thank you all so much for your tips and info regarding the Zometa infusion. You all are so extremely helpful, as always. At this time, I’m thinking I have some sort of viral bug and it’s nothing to do with the Zometa. The vomiting lasted less than 24 hours but the big D has been a different story. It has continued on - today is Day 4. I think it’s getting better and I’m on meds for it, but still unpredictable (as I sit here wearing Depends!) I got tired of all the messes it has created and all the washing I had to do, so Depends won out. Less stressful and I’m not leaving the house anyway. I did go in for bloodwork and fluids on Friday and found my neutrophil count (ANC) was .5 (overall WBC was 1.3.) My PA was quite concerned with that and really wanted to give me a Neulasta shot but I refused. I was not up to having bone aches for 24 hours, which I’ve had before. I know Claritin would help with that but I hadn’t taken one that day & didn't feel prepared for those side effects. Plus, I already felt terrible and wasn’t ready to handle one more thing. Has anybody ever had that low of a neutrophil count? I’m really not sure I ever have in my 11 years with BC.
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Thank you!
Miaomix. patches sound useful. and i will try epsom salts for sure.
vlnrph . I have not had an oncologist assigned to me yet, im hoping some radiation will help.
I was going to ask my GP for some stronger pain killers as the ibuprofen is not getting to it anymore. I did not want to start out with super drugs then have no where to go for better. Id like to last as long as possible in this world
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Y'all may want to look into Targin. Its a new generation combo of oxycodone and naloxone. The mix reduces the addictive side of oxy. It was approved about three years ago so its more expensive than oxy but as powerful and less harmful.
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My neutrophil count got down to 0 when i first started chemotherapy. I was supposed to fly cross country to my daughter's wedding and the doctor didn't want me to- for fear of getting sick. But I went anyway of course! the neutrophil count went back up within a week,
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My neutrophil count got down to 0 when i first started chemotherapy. I was supposed to fly cross country to my daughter's wedding and the doctor didn't want me to- for fear of getting sick. But I went anyway of course! the neutrophil count went back up within a week,
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I feel like I need to write these down for when that time comes for me, too. I've developed a vertebrae fracture that is starting to crank up. Thanks, Daniel86 and all for the tips.
DayLily, welcome to our little world. As you settle in to a treatment plan, keep us posted and we'll help you along the way. P.S. you live in one of the most beautiful places on earth.
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Daniel86 - Thank you for that excellent news, less addictive sounds better, even if it is still more costly.
Jaylea - Thank you for your warm welcome, i know i will be asking many questions in the future. Alberta is beautiful, land of the blue sky, even when it is cold.
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I just had a PET/CT scan. The CT portion noted numerous lesions throughout the skeleton but the PET portion did not note any metabolically active areas on the bones. Any thoughts about this? My MO is convinced that it is bone mets but why wouldn't they light up for PET? I prepped carefully for the test, avoiding exercise, staying warm, eating very low carb, and even fasted 17 hours before the test.
Now MO wants me to do a bone scan? I thought the PET/CT was much better than a bone scan. What will this new test show that the PET/CT didn't?
I asked about a biopsy but he sounded like the very act of collecting and processing a bone sample would mess up the cancer testing. Does that sound right?
Confused and in the fogged minded stage of trying to wrap my mind around this new diagnosis.
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Daylily, in addition to other good suggestions here I’m a big advocate for swimming or water therapy. It really helps to keep that area moving while dealing with the pain.
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Leydi, there are past debates on what type of scan is best on this thread and it seems it’s really up to the MO. Mine feels bone scan is best to measure bone Mets. We do CT scans of pelvis, abdomen, and chest to check organs and looks past whatever CT notes re the bones
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Leydi I had a CT in Jan. which showed new small lung nodules. My scan results said that they were too small for Pet to pick-up. My Onc. is going by training that they are mets but without a biopsy she is not 100per cent. I guess the nodules, cancer cells have to be so large before the PET can pick them up. Hope this helps some. These tests are good, but not perfect. We have to rely on the radiologists reading.
Another thing I had a CT because ins. denied another PET-CT last Oct. It did not show bone mets. But a bone scan did just one month later. I questioned these also. I was told a bone scan uses nuclear medicine so it's better at picking up mets. I'm very new to these too. So this is just my limited experience.
Hope some of the others chime in.
Best wishes for you, Sue
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Hi Sue,
I’m the opposite. Bone scans don’t show much in terms of my sclerotic mets but my CT shows that I have bone mets everywhere. I attribute it to my slower growing cancer. The other tricky bit, with sclerotic mets (bone growing) it’s hard to tell the difference between healing and new mets on CT.
Pat
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I am wondering how many of those of you with bone Mets were diagnosed based on a solitary met. I'm high risk for recurrence and my oncologist seems like she's very suspicious that I've progressed. I had a bone scan last week that showed one area on my right hip. I am waiting to be scheduled for an MRI. My sense is that my oncologist thinks an MRI will not only determine exactly what the area on my right hip is, but might show if there are other areas that didn't show on the bone scan.
Has that ever happened to any of you where the bone scan showed a single spot and then further testing such as an MRI or pet scan showed the same spot but also additional spots?
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Pesky - Yes this happened/happens to me. Different lesions show up with every scan no matter what type it is. They can't tell if responding to treatment or new lesions implying progression.
I learned through all our warriors in this thread, wait it out and do not jump to conclusions quickly. Keep living the very best you can. The medical information will become more clear with time and symptoms whether you (we) worry and stress about it or not.
Will be here for you.
Gumdoctor
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Thank you for the reply! I’m looking for others who initially presented with just one area of metastasis. I know usually with bone mets there’s multiple spots seen.
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Hi Pesky. Exbrngrl has had a solitary bone met for years. I don’t know if it was ever biopsied which is probably the only way to know with certainty that it is metastasis. As Gumdoctor notes, each scan methodology has its strengths and weaknesses.
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I was dx with one met (via pet) and a CT 3 months later showed several more in my spine but MO said he wasn’t worried about those and doesn’t count them as Mets until they show on bone sca
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Interesting, jensgotthis. Thanks for replying. I only had one spot on my recent bone scan (right hip). So I was wondering if my upcoming MRI would show more. Is bone scan more sensitive for mets than MRI or CT? I thought it was the other way around.
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