Bone Mets Thread
Comments
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Dear LauraLW,
Welcome to the community. We are sorry that you are in such pain and hope that you get to the bottom of it. You may want to review the topics in the Forum For those who are not stage 4 but are worried about a recurrence or mets. You may find some similar stories of other members there that you can relate to. The Mods
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I have a sternum met but my sternum has never hurt until I got a virus quadruple whammy from hell this winter. Coughing like a madwoman. Here's hoping I've got costochondritis! Scans tomorrow, I think.
So we wish for horrible things that are less horrible than what we have....
>Z<
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Z I’ll be sending those good vibes your way. Zap those buggers to oblivion
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Hi Everyone! Does anyone know whether we have a threat for Abraxane? My cousin has been using Abraxane + xeloda combo for 6 months. The combo significantly dropped TM until recently, the drop has slowed down. The TM is still out of range but stable. Her doctor wants her to keep using the combo to maintain, but based on my understanding, Abraxane Should not be used for long term due to toxicity. Right? Any suggestion for whether she should continue is appreciated!!!!! Thanks so much! .
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Hi everyone...I also have Costochondritis. Its going on 2 months and its excruciating and debilitating. It seems somewhat common post BMX. Bedrest and heating pad seem like the only thing that helps a little. Wondering if it will ever go away??
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thanks lulubee!!
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Booboo1, I have to learn that! Just finished chemo #5 yesterday for MBC stage IV (breast/bone), & mentioned to doc I had some skin bumps around my left boob/armpit/collarbone area. Doesn't hurt, but he wants me to go for punch biopsies next week to see if it's secondary skin mets...I'm sure it means the chemo is working on my triple + original cancers, but I didn't expect it to pop out somewhere else so fast, but that's the fun of MBC! I'm anxious, of course, and awaiting a call from the dermatologist. Don't know what treatment will be, if it is mets. Right now I'm on herceptin/perjeta/taxotere every month, one more to go. Will try not to worry so much - hard!
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Longtail - I think it's a good idea to get the punch biopsy, but this may be a reaction to any of the drugs (especially the Taxotere). I was on the same combo for 8 treatments and had a wide variety of strange SE's, including various places of bumpy skin. Please keep us posted on your biopsy results....and try not to worry too much (easier said than done, I know)!
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Longtail- here's to a benign skin reaction. Fingers crossed for you. MJH
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Longtail, hoping and praying it’s a se !!!
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Hi all, sorry I haven't been on for so long. I'm now miles behind with all your posts, with little hope of catching up any time soon. I don't mean to be selfish, not replying to anyone else's problems but I'm a bit concerned about a pain I'm getting at the site of one of my many bone mets. It's at the left orbital region and I have a nagging ache there which doesn't worry me but the stabbing pains, especially when I move my head, do. Can anyone contribute their thoughts, please?
Husband and son both say I had this pain at the beginning, before I started treatment. I have a total memory blank around that time. All I remember is pain but nothing very specific.
I'm having a bone scan and a CT tomorrow but I don't expect to receive the results till my next expected oncology visit on the 7th February.
I just did a quick skim of this page....Babs, so sorry radiation hasn't helped.
Jen!.......how about you??? How absolutely fantastic! You must be so relieved even if you're still feeling yuk.
Silviah....I tend to agree with the others.
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Hi Leapfrog! I was a nurse for years. After you have your scans/tests, wait 3-4 days then go to medical records and get a copy of your results. By law, they have to give them to you. Hope you are well! Love and hugs!!
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Hi Leapfrog. Thanks for the update. Personally, when I get behind, I read the last two posts and go from there. It's a group effort keeping the conversation going ...
>Z<
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I took everyone's advice and reached out....I'm just waiting to hear back. I know she'll reach out when she's ready.
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DH made pan fried pork chops with Brussels sprouts and beans. The side of white beans, lentils and ham hocks was so good, I brought it for lunch!
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nice work silvia.
>Z<
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Leapfrog,
I know that imaging results will answer your concerns, but could the stabbing pain be some sort of sinusitis? That area of the orbital region, both above and below the eye, are on top of major sinuses.
I'm used to throbbing ache with bone mets, but I've only ever gotten stabbing pain with weight bearing on a mets - like a hip socket when walking. I wonder how other people have experienced bone pain.
Are you moving your head side to side, or up and down to create the pain? Up and down can diagnose sinus pain, while side to side isn't as pertinent for sinus trouble.
You should be able to extract the results of your imaging before your appointment. Personally, I tend not to do the because it allows me to exist in a state of denial just that little bit longer, and I don't really know how to interpret the results, and end up twisting myself into little pieces. Others here are far more competent in handling that information.
Lovely to hear from you - hope the sinus pain resolves soon!
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Good to see you back Leapfrog. I’ve developed a new strategy for medical records. I print request forms and take one with me. I go down to medical records on my way home. I drop off the form showing my ID. I’ve filled in the test I’ve had that day. They usually mail it in a few days because it’s only one or 2 tests. We have a portal for blood work but scans,ultrasounds etc have to be requested in person or with a notarized signature by mail.
My mo calls right away if anything is wrong. I’m lucky in that
Just received my Tykerb. Letrozole tomorrow. I’m reading the literature on Tykerb and I’m getting anxious about se . The kit had udder creme,sunscreen,socks and biotene mouthwash and some kind of stick thing. I just put it all back in the pouch. Holding off on that until I return from trip to the beach. Just read article on front page of bco site about this treatment plan.
Anyone else taking Herceptin Tykerb letrozole combo
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Good to see you back Leapfrog. I’ve developed a new strategy for medical records. I print request forms and take one with me. I go down to medical records on my way home. I drop off the form showing my ID. I’ve filled in the test I’ve had that day. They usually mail it in a few days because it’s only one or 2 tests. We have a portal for blood work but scans,ultrasounds etc have to be requested in person or with a notarized signature by mail.
My mo calls right away if anything is wrong. I’m lucky in that
Just received my Tykerb. Letrozole tomorrow. I’m reading the literature on Tykerb and I’m getting anxious about se . The kit had udder creme,sunscreen,socks and biotene mouthwash and some kind of stick thing. I just put it all back in the pouch. Holding off on that until I return from trip to the beach. Just read article on front page of bco site about this treatment plan.
Anyone else taking Herceptin Tykerb letrozole combo0 -
Hi All,
I asked this question on another thread but think it might be best if I asked here. Have any of you had issues with groin pain? This started a couple of weeks ago and is becoming more persistent. I thought it might be related to my belly mets but happened to be speaking to my old RO (now in another province) and he mentioned someone with enlarged lymph nodes in their groin. When I mentioned my symptoms he suggested it could be mets in the hip (more likely). I hadn’t even considered that but definitely the bones seem tender.
I’ve had so many new drugs lately (each with their own uniquely wonderful SEs) that I don’t want to jump to conclusions and, it won’t change our plan as we just switched to Faslodex, but it would be good to know if I need to watch my hip joint!
Thanks all. Don’t know what I would do without this site.
Hugs. Pat.
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Z - I'd encourage you to spend some time in the cancer resource center in the Gonda Building at Mayo. It's on the first floor Lobby level, very easy to find. They have lots of books, but also have librarians/research assistants who will find articles and print copies for you. They are a great resource. With your history of research, you may find some of their more technical materials helpful.
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Thanks Snowfall. They have a great library, but I emotionally and mentally wiped out. Spent the evening watching Arrested Development. Thinking of everyone tonight.
>Z<
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Get lots of rest Z. Your body has been through the mill. Take good care of yourself and I’ll be sending up prayers for yiu
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Thanks Gracie. How are you?
>Z<
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I’m doing ok. Getting used to the Ibrance, now if it will just work
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I totally understand the wiped out feeling, Z. I hope you can rest well and feel that you're in competent hands.
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I don’t know if I’m posting in the right place. This month has been heart breaking for me. I started in the Just Diagnoised thread and my dx just kept getting worse and worse every visit. I have had severe bone pain for a couple months. Final dx Stage 4 out the gate.
I had my PET Scan Monday and was given the news two days ago that I have extensive Bone Mets. I say extensive because it’s in my skull, spine, shoulders, ribs, hips, thighs... like everywhere. I was all prepared to start chemo this week. And the news is just devastating. I’m 31 years old with two beautiful small children. My daughter is 4 and my son is a year and a half. Trying to process not being able to see them grow up is the worst feeling I could imagine. I was very prepared to fight BC and to be a pink ribbon survivor and I don’t feel I getthis that chance. I’m scared. I refuse to look on other websites for life expectancy. I don’t want to even know.
Are there others like me that are younger and scared?
Am I posting in the right place?
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Hi all
I need some help here. My bone mets were confirmed last March, during tx for Skin mets. On my last bone scan, end of November, I lit up like a Christmas tree. I have increased activity in bilateral ribs, cervicle, thoracic, left scapula and left clavicle. Multiple spine mets. I keep asking my mo about a bone biopsy and he keeps telling me it's difficult to do a biopsy on the bones. Is that true? I'm really getting scared as I continue to progress.
I'm starting weekly taxol and herceptin next week. I sure hope it stops this crap.
Thanks
Cyber hugs to all
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Granny, it is not hard to obtain a biopsy of the bones. In fact, my onc insisted that it was the first thing to do. The information provided from the biopsy play a very important part in your treatment. It is not a difficult procedure to go through.
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