Bone Mets Thread
Comments
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chef47, I have read through all your posts as I really want to get to this issue of tumor fever. You sound like you have been through the wringer only to get right back in it for even more problems. In fact, I feel lucky after hearing of all your complications. It seems like your problems could have little to do with the cancer, and I am wondering if you were just any regular Jane, would your eyes still not open without pain? Would your fevers still occur?
My fevers started shortly after I was diagnosed with mets two years ago. I have been hospitalized twice for the fevers, having had all tests run trying to figure out the origin., but without any reason found. I have been on antibiotics several times without any success. Long story short, I was finally told that the fevers must have something to do with the shedding of cancer cells. My most recent fevers last week bring me back to wondering if I should just quit reporting them to the MO and get on with daily activities with acetomenophin helping hold back the fever. Not one doctor or nurse has ever used the term "tumor fever." And I certainly did not know it was associated with end of life issues.
Thank you, chef47,, for discussing fevers,and hope you feel better soon!
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I run a fever almost daily and have for years. Usually right at about 100.5
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Strange, I was hospitalized with fever as well. First they said I had pneumonia, then they just didn't know. I had every test under the sun and was in the hospital for a week and they never did figure out what the issue was. I'll never do that again, I'll just take the tylenol and keep quiet, the hospital was horrible.
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Andi- I hope that your scans go well! I know it can be nerve racking while waiting, and it's hard to take anxiety away while waiting. I see that you live in Colorado, so some amazing outdoor activity would probably do the trick. I hope to get out that way in the next year or two to ski. I love to ski Colorado, it's beautiful!
To help with stress I have been taking an anti anxiety medication to help with hot flashes, and anxiety and it help so much! I love that so many woman have had luck with recent treatments. I saw the post about fevers, and I'm wondering if that's what I'm experiencing. I haven't actually taken my temperature, but I do go through evenings where my body temperature will increase for no reason. It was just momentarily, and a "hot flash" but lately it's been longer, for a couple of hours. IDK seems weird...
Does anyone have a favorite daily supplement that they like for bone health? I haven't asked my oncologist, but I would like to take something for bone health since I had a hysterectomy. I do get Zometa every 6 months, and will probably start getting it every 4 months.
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hi Shanna,
I take hydroxyapatite calcium ( derived from bones) in combination with Magnesium chloride, D3and K2 vitamin. They should be taken with food all at the same time to ensure the absorbability of the calcium and prevention of arteriosclerosis.
Sorry I can't help with the hot flashes...but Tamoxifen might have something to do with it.
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Hello,
I am writing on behalf of my mom. She was diagnosed with bone mets about 6 months ago and recently started Zometa. She had terrible side effects and nausea for about a week. Have any of you experienced this from Zometa? And did those side effects get better over time?
In addition to my mom's medication (anastrozole & zometa) she does a lot of holistic/natural remedies, especially juicing and apricot kernels. She wanted me to ask if any of you take apricot kernels while on Zometa? She's worried that could have made her sick. She feels much better now, but she's concerned for her next zometa treatment!
Thanks for your help & all my love and prayers to all of you!
Ryan
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hi Ryan,
I’m not on zometa so I can’t comment on its SE but regarding the kernels there’s a limit to how much she can ingest safely.
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Hi Ryan,
I'm on Xgeva now, but I did have Zometa treatments for two years prior. I know some people do have SEs, but I was lucky to never have any. I've read on these threads that slower influsions of say 20-30 minutes can help and also hydration. I do believe that helps. I always drank plenty of water the day before, day of, and day after my infusions and maybe that's why I didn't have trouble. I don't know anything about apricot kernels, but she might try cutting back or at least around her infusion and see if that helps. Good luck to you and your mom.
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Jaylea and Wallaby and Andi......thanks very much for your love and support and wise words. Wallaby...wow, you really had a tough time and thanks for recounting it for me. I found it very, very helpful.
I now look on my cancer as a passport out of an intransigent situation. But for it, I would still be at home living with a man who thinks he loves me but who mistakes controlling for loving. And whose selfishness has led him into an unhealthy relationship with a young woman he thinks he is mentoring but with whom he is, in fact, in a co-dependent relationship. All very complicated but now that I'm at a distance I can see it clearly.
Jaylea, it was fair enough that the MO was concerned as my TM had been gradually increasing for almost a year and then did a sudden jump up to almost its original level before treatment began but the senior consultant and he had a discussion and decided to send me for a bone scan asap and even they were surprised by the result. I saw the senior consultant last Wednesday and he explained that sometimes TMs can increase due to benign reasons such as inflammation. TBH I couldn't take in everything he said as I my new pain med has made my brain even slower! but I understood even though I can't replicate it here. What was important is that there is no new activity, no new areas of cancer and no progression of the tumours I have which has given me back my optimism.
I'm fortunate that I'm surrounded by supportive friends and sadly for my husband, even his own friends are very disappointed in his attitude although he doesn't know they have contacted me to tell me. He really does believe he's doing all he can. I'm keeping it amicable but putting boundaries in place.
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Sorry I haven't commented on anyone else's posts. I will be back to doing that once I'm more established.
Love you all....hugs
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Hi Ryan - the first infusion of zometa can cause severe side effects. I was pretty sick after my first infusion. My nurse told me that it would be better the next time. She also suggested to increase the drip time from 15 min to 30 min. I went with increasing the drip time to 30 min and that made a world of difference. Also she should drink a lot water. There is a topic on this board that explains how to prepare for zometa. I'll look for it and add the link to this thread.
As for apricot kernels - i have no experience with that. Someone may come along with some input.
I hope your mother has a much better experience with her next zometa treatment.
P.S. - Benadryl may help too. Talk to her doctor or nurse about her side effects and they will know what to do.
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Hi Ryan, I've been on a monthly 30 minute infusion of zometo since March. In fact I have one in the morning. Her doctor should have given her a comprehensive printed copy on zometo which covers EVERYTHING. I'm shocked to hear some on this thread have had infusions or shots that are shorter than 30 minutes. SE can be horrific with shorter time frame. On my day of infusion I drink between 2- 3 quarts of water. Other days I get my 64 ounces a day. The second day of my first infusion I had terrible pelvic and lower back pain intermittently but I was already in serous pain so what was a little more. With each infusion the flulike symptoms I have are less and less. I never had nausea but there are several SE that can occur. Hope she gets along better. Be sure to google zometo and go to their site or chemo site for correct info. I don't take any supplement or over the counter meds unless approved by my oncologist. She needs to talk to her doctor about the apricot kernels Peace
Jo
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About fevers-- I've had inexplicable fever flares off and on for years with this stuff. I have spent the night in ER with 105 getting tested every which way only to find nothing remarkable other than elevated WBC and dehydration. It's pretty common for me to randomly run 100.5 for a few hours here and there. I don't pay any attention to it anymore; just pop some Advil and choke down yet another quart of water. If I ran fever two days in a row, though, I would probably start paying attention.
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Hi Girls I am going well on my marijuana oils (3 different strengths) one thing u have to check is the THC is the correct amount. Too much can feed estrogeon too little not killl the cancer cells. I haven't got huge pain relief but my tumour markers have dropped by 200+ points (mine are accurate ) and I feel calmer and happier. I have just started on a chemo tablet xeloda and no side effects except for a little nausea . I have wide spread cancer in bones and some in my bone marrow so hopefully will knock it on the head. I have been reading along and I am amazed at the courage here in these boards . I take whatever pain relief or a mild anti depressant as I need as I still need towork raise a family and live a full life
Love Jude
I
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Leapfrog: So glad to hear that you have no new activity and no new progression! As for the relationship issues, I'm glad you found it helpful as I didn't want it thought that I was just posting my "sob story" for sympathy, with no point to it. That was a long time ago and in a galaxy far, far away! And it's a good thing...I can't imagine having to deal with Stage IV treatments and that kind of thing at the same time. I applaud you for stepping back for a more objective view of the situation. It's difficult but necessary, as we women think we have to be able to fix everything...our own health and our relationships as well, and all at the same time. Wishing you peace and continuing health improvement!
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GraceDD-Thanks for the info about Gabapentin. I've been on it for 12 years now. The year I was stage 1, and had all my reproductive organs removed (ER +), at a very pre-menopausal 43. I was having 50-60 hot flashes a day. First they put me on Effexor. It helped with the flashes, but I felt like a zombie. After a year of it, I asked to be switched. That was when I was put on Gabapentin. I started weaning myself off of it after the hot flashes stopped years later. My dr said to stay on it, it is probably helping my pain. So I take 2 twice a day.
Ryan-I've been on Zometa for 6 years now (once a month for 2 years, now once every 3 months). I did have some aching in my shoulder of the arm it was given, in at the beginning. I still get some aching but it only lasts a day or two (and I now get it through my port before my chemo).
Lynne
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Hi Delvzy - can you speak more to the right amounts of MM and where you heard about it being estrogenic? Any research articles on this? I am just certified in PA. Thanks!
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the information I was given was from the organisation doctors that have been prescribing the THC oils here is Aust for quite a while. . I have researched a bit on the internet but the fact that my tumour markers halved in 3 weeks when I had been on NO TREATMENT for weeks inspired me to continue.
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delvzy- would you feel comfortable sharing the information? Or do you no longer have it?
It sounds quite amazing and honestly a bit nerve wracking! I am so thrilled for you and if marijuana oils ALONE can treat cancer I would LOVE to be informed!!
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I saw a relevant road side sign this morning:
Despite the high cost of living,
It remains popular.
High cost of living indeed!
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Hi everyone.... I'm determined to try to keep up with your news as I used to. Now that I'm settled in my current apartment I should be able to do that. I've had a succession of visitors, which is great. I find I need a recovery day at least twice a week so now that I'm living on my own and can do as I want when I want I have a bed day whenever I feel tired. I get up, have breakfast, tidy up, shower, put on clean PJs and go back to bed and doze, read, mess around on Facebook, whatever I feel like doing and it works like a treat having no pressure on me to please someone else. I can recommend it! I'm feeling better than I have for ages. The side effects from Ibrance/Letrozole even seem to be less now that I'm not tensed up all the time.
I saw a breast care counsellor to have a chat about my marriage situation. I can't say she helped a lot but I've learned to put up boundaries. However, she gave me this link to a talk by Dr Don Dizon, an oncologist, at the MBC National Conference in 2013. It's a bit dated as you'll see but I like his approach so I thought I'd share it.
I hope it works for you.
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It would be good if we could put Likes on the posts here, as on Facebook. So many times I want to comment on someone's post or just show I relate to it. By the time I get to the end of all the posts so I can comment, half an hour has passed and I can't remember who said what! So take it I just put a Like on your post Iwrite!
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Leapfrog-I agree with the "likes". I actually take notes as I read, if I've missed more than one page. It helps. That way I don't miss anyone I want to comment on.
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hi beautiful people! Thanks to all who offered support and advice. Just to let you know where I’m at with the fevers, they are still going on, about once daily, anywhere from 100 to 102. I got sick last week with vomiting and diarrhea and ended up in the hospital to go thru another round of tests for the fever and I guess they still see no reason so therefore it’s called tumor fever. I have had progression since being off chemo since June which is scary but the drs don’t seem to alarmed by it. I just have to finish radiation because Doxil doesn’t get along well with radiation. Anyway, last rad is today! Start Doxil on the 20th. My life will be so different and greatly improved from the past couple months from going to rad everyday along with so many dr appts, to just chemo once a month!!!! Yay!!!! Well except I will go for zometa on a different day atleast in the beginning. Also since rad has helped sooooo much with the pain and I have been able to taper down on pain meds I feel so much better. I’m grateful for them when my pain is unbearable but looking back I think some of the horrible yucky can’t get out of bed because I’m so weak and fatigued may have been from having to use the maximum dose. I don’t know for sure but I do know that I feel more alive now! I am full of hope and not so bogged down by the “d” word. I hope to beable to balance the occasional sufferings that we may endure that aren’t really life threatening, just miserable to go thru, better from now on and not fall into despair over it. It’s hard for my family to watch too, my husband especially because he doesn’t really stay informed like he should so if I look half dead he thinks I am half dead:/ he is another story:/ anyway sorry for rambling and thank you for always being here! What an amazing group we have! Love and support to all of ya!0
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Thanks for the link Leapfrog, I found it to be helpful! I'm so happy to hear that you are doing well now! I had gotten extremely worried about you for awhile. Peace and contentment radiate from you now!
Lynne, I used to be against a"like" button, but now I think it's a great idea! I find it so difficult anymore to catch up and then to try to post is almost impossible. Dh and I are coming to New England the first week of October, we are going to follow the leaves changing. I am hoping that you and I can meet! I would very much like to meet you and Mary Jane and Lynne(50's)! Meeting you is a part of the reason why we are doing this now! We have talked about it for years, now is the time to do it! Life has been so stressful this year, we felt like we needed a break and I thought that if we could make this trip we could have a great trip and meet up with a few of the wonderful women who I have met here. Anyway, please let me know if that would work for you!
Hugs and prayers,
Claudia
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bigbhome, Lynne’s - please post pics if you meet up, we’d love to share it. Hi to everyone 😀
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Mae, we will! We are still working on getting to your neck of the woods! Dh is recovering nicely from all of his surgeries.
Lynne(50's), I wanted to let you know that the hearing was this morning with the county commissioners. The motocross track was voted down unanimously! Yay!!! There was a huge turnout of residents who did not want it!
Hugs and prayers,
Claudia
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Hi All! I'm generally more of a lurker than an active participant, but wanted to check in and see if anyone has any thoughts about my recent scan results. As a rule, I usually get a CT scan and a bone scan (since insurance stopped paying for PET scans late last year. For my scans a couple of weeks ago, insurance approved a PET since my kidney function test was low. So....I had a CT and a PET. Results were as follows:
CT Chest without IV Contrast
CT Abdomen and Pelvis without IV Contrast
1. Multifocal sclerotic bony metastases in the axial and appendicular
skeleton, unchanged
2. No new evidence of metastatic disease in the chest abdomen or pelvis.F-18 FDG PET scan from the skull base to the mid thighs.
1. Interval development of mild hypermetabolic lesions in the left first
rib, left iliac bone, and right sacrum are concerning for progressive
osseous metastasis.
2. Increased sclerosis in the right eighth rib posteriorly without
corresponding hypermetabolic activity.
3. Findings concerning for left maxillary odontogenic disease with
extension into the left maxillary sinus.
4. New hypermetabolic activity in the proximal stomach is indeterminate,
possibly inflammatory in etiology. Correlate with endoscopy as clinically
indicated.As you can guess, I am really confused and frustrated with these results. I have been bony only mets for 38 months and have been only on the Ibrance/Faslodex/Xgeva regimen. Little to no SE throughout the entire time. My Onc is worried that I have ONJ and has referred me to an oral surgeon (had a tooth pulled about a year ago and now that area is acting up...
Referral to gastro for endoscopy and colonoscopy. What are your thoughts? Which is usually more accurate?...PET or CT? Onc is scheduling a bone scan for comparison but I find that the ladies and gents on these boards are so knowledgeable about everything!! Any feedback and advise is appreciated. Also, anyone who has any experience with ONJ, please let me know what I'm up against.Thanks so much in advance!!
MM
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hi Masons,
The reality is that all these tests, except for a biopsy are inconclusive, that's the reason why they are sending you to get further tests. Inflammation and infections may affect the uptake in a Pet Scan. A well know actress was told she was full of cancer, when in reality she had a systemic fungal infection. Luckily she didn't believe them, and is still alive today.
Be happy that you will get confirmation before undergoing a change in TX. I hope the other tests confirm that your lack of symptoms means no progression.
In my case, at times I progressed when I was feeling great! That's what Ifind stressful about this disease, nothing makes sense. Especially the therapies that diminish our immune system....but what choice do we have?....a dentist that deals with cancer can examine you and determine if you have ONJ, that's how I was tested. Good luck
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masons! I don’t have advice but hoping you get good results from further testing:) it sounds like it could definitely NOT be cancer:)
Ok guys, so I just finished last rad to below my knee for a concerning spot, it was a one dose deal and then me and my daughter went to lunch, I had one bite and was nauseous. On the way home actually on our road I ended up having her pull over so I could throw up....violently....everything that was there....I haven’t eaten much and really wonder where it all came from...tmi...I know. Anyway has anyone else had vomiting after rads? Like remember this was to my knee?0
