Bone Mets Thread
Comments
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You sound like you are doing well with the rads so far Beth........being fatigued is definitely a SE so be kind to yourself and rest when you need. The diaroeha will probably kick in after one or two more sessions. Hope it's not too bad.
Love n hugs. Chrissy0 -
Good to hear, Beth! You go girl!!! I know it varies from person to person. This is rather funny, in a warped way, but they told me to expect some nausea after my first one (the radiation was at about stomach level). So I drove home (an hour) and was getting waves of light nausea about 20 minutes from home, but nothing too awful. I get home in time for my first big conference call with a new client - about 20 people on the call, international call, etc. And about 10 minutes into the call, it hits, and I start to hurl. Lucky for me, my husband put a pail in the living room just in case. So I put the phone on mute, hurl, and they ask me a question. I take the phone off mute, answer, back on mute, and hurl again. This went on for an hour! Talk about a great way to make an impression on the first call. It was rather comical as we hadn't let on to the client that I was having health issues. During the last call I had with the same client, we had a 6.2 earthquake, and I spent much of the call under the table while the builing swayed. Glad I changed jobs and don't have them as a client anymore.
One of the many funny moments I've had related to treatment - if I don't keep laughing about it, I'd go mad.After the first treatment, it was must mild nausea, no throwing up, but I ate very gentle food a few hours before treatment, and it was fine. Just fatigue, but that was expected.
Fingers crossed and prayers to you that things continue to go well, Beth!
Terre
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Kiwicatmom,
Aren't you glad it wasn't a video conference call ?
Caryn0 -
Thanks all for the headsup on rads for bone mets. I'll be having radiation for recurrent spine mets for the first time in a couple of weeks. Not looking forward to the nauseau & fatigue.
Terri
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I spoke to soon about the no diarrhea yet lol it just hit me today. Time to stock up on immodium.
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Without being too graphic, I had odd diarrhea during rads. It only hit in the late afternoon and had a jelly like consistency. I just rode it out (you know where) and was great full to be on medical leave:)
Caryn0 -
Sounds like you maybe had mucocitis.
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I just googled it and yes, that does sound like what I had but it was not painful. It was also so regular that it was easy to deal,with.
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Hi everyone. Has anyone here had kyphoplasty? I have a compression fracture at T12, I had a lesion there and had radiation there back in march, and now I have a new lesion at L5 which I'll be having radiation on soon. My radiation oncologist suggested I look into kyphoplasty and I was just wondering if anyone had any opinions? Thanks!
Deyla0 -
Never heard of it, so I looked it up, http://www.ncbi.nlm.nih.gov/pubmed/22086095 I suppose it could work...
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Devia,
Yes, some ladies here have had kyphoplasty. If you use the search function you can find posts about it.0 -
Hi All,
I have not posted in awhile so first -- I am doing well. My CA27.29 came down for a second month in a row. This Friday they will be checking it again (I won't find out until the following week though). I finally got that scrip for physical therapy and it has been working really well. I am no longer limping! I still have low level pain in one leg but it is pretty minimal. I can walk a mile again - still walking slower than I would like but I am sure that will improve also. Sooo, here is my question for all of you.
Has anyone, who had bone mets at first diagnosis, had their primary tumor removed? If so, did you have only the tumor removed or also lymphnode biopsy? And what about radiation. I had always kind of planned that I would do it when they said I was ready, but now I understand that it might also include radiation if I choose to do the lumpectomy. I am not sure I want to put myself through that. Also, there are mixed opinions out there. Some say that people who remove the primary do "better" meaning average survival goes from 26 months to 30 months. But this was done with retrospective data analysis from people about 10 years ago and we all know that survival times have extended .... I read one paper that said that there can be an interaction between the primary tumor and distal sites (metastases) where the primary actually suppresses growth of the metastasis. If this were true - taking out the primary would not only mean surgery (and maybe radiation) it would also mean that the cancer in my bones might grow faster after the primary was removed.....
So, I am counting on all of you to tell me your stories and what your MOs/ and surgeons have said on this issue -- to have the surgery or not.
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20130502,
Glad to hear that you are doing well and responding to tx. I had a bmx with axillary node dissection (left side) before they discovered my bone met, which was there unbeknownst to anyone. I haven't heard that having done this might make bone mets grow faster. On the contrary, some docs believe that reducing the tumor load is beneficial but there is no clear consensus. I did not have rads to the breast area, only to the bone met itself. Hope you continue to thrive.Caryn0 -
20130502,
I was diagnosed with stage IV from the outset. I have no node involvement and had no surgery. I had T and herceptin with rads on my spine for pain. There was never any talk of operating. I had my first pet scan in February which showed I was NED, next pet scan is tomorrow so I'm keeping my fingers crossed!
Nicky0 -
Micky, keeping my fingers crossed for you to continue being NED!
Love n hugs. Chrissy0 -
20130502 - I too was stage IV out of the gates with bone mets just this August. Started with months of back pain (seeking treatment from chiropractor with some relief). Finally requested MRI and they found widespread bone mets. Primary tumor was RB. MO sent me for FNB and CNB only. Pathology report shows ILC, Grade 0, etc. MRI showed disc compression and needed emergency surgery. ..ending up with spinal fusion for T6-T10. Kyphoplasty (injecting cement) was not an option as I was in danger of being paralyzed. In place of it, they put a cage on my T8.
Starting on Femara tomorrow and then Zometa in 9 weeks. In preparation for Zometa, I had to have 2 wisdom teeth extracted last week. Had some SE from Penicillin hence the delay with starting Femara. I hope this AI will be kind to me. Reading the posts scares the heck out of me.
Waiting to visit with RO for radiation treatment plan. I wonder which bone they will radiate first.
So for the past month and a half, it is a life of Oxycodone, Calcium, Vitamin D and Ativan for me. So amidst of all this pain... I have been questioning myself if it is even worth continuing with the rest of the proposed treatment plan of Femara, Zometa and rads which I know will subject me to even more agony. Ummm, can you tell how depressed I am? My apologies to all for venting. I hope you all understand what I am going through...0 -
2013, I had chemo as first line therapy then a mastectomy. I also had 19 nodes removed. This was done over 5 years ago. I think doctors are more reluctant to remove so many nodes today. As to the mets growing faster, this could also mean they become more sensitive to chemo or other therapies. Just guessing. I was NED after 5 cycles of chemo so everything that came after (surgery, radiation, Femara) was to mop up or "weed out" as a second opinion doctor said. Maybe get a second opinion, too?
NIcky, Fingers crossed!
(((Teena))) Zometa actually reduces pain from bone mets. And as far as Femara can kill cancer, this will reduce any pain from the cancer itself. This makes up a lot for any Femara pain in my book. I had mets and chemo pain concurrently, so I have some idea of what you're going through, but just a bit since I didn't have disc compression and surgery for that. You really have been through a lot. Radiation will also help with the pain.
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Nicky, Mod's fingers are also crossed that results continue to be good!!
(((Hugs)))
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Heidihill,
Thank you for the virtual hug... I am glad you understand what I have been through in such a short time. I pray and hope the physical and emotional PAIN would end soon.
Take care my dear sisters. I don't know what I will do without this forum. You all have been a big help.0 -
Bone Mets Sisters I have a question for you? Since I've reached my total out of pocket insurance coverage, any tests done now are paid 100% (no more 20% for me) and I am scheduled for more scans in the next week or so. I have not had a PET scan since the beginning (2011), since my onc likes the bone scans best for bone mets. however, past MRI's have shown bone mets that the bone scan didn't pick up. She was going to order more MRI's this time (cervical, thoracic, lumbar, rt and lt hips) to compar to last MRIs. My question to you is, Should I push for a PET again or just go with the MRI's. I've seen where PET's don't always show mets, or show spots that could be mets but isn't. All scans seem to have their pros and cons. I see her this Friday and will take all your comments to heart before I see her. Thanks for your input.
Linda
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Thanks to all who are crossig their fingers for me - I hope you're not too uncomfortable! The scan is early tomorrow morning - 8 hours from now so keep them crossed a little longer, please!!!
I see my onc for the results on Tuesday, so I'll be back to let you all know
Nicky0 -
NickyJ, will be thinking of you over the weekend and until you get your results. I pray its continued positive news.
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Teena, of course you're depressed! I was depressed when I found out that I had bone mets, and I had had 17 years to get reconciled to the idea of having cancer. Having mets from the start would be such a kick in the stomach shock, that I can hardly wrap my brain around it. In my case, after a few months, I was much less depressed about the mets. Most days aren't much different than before the diagnosis. I'm fairly positive, and hope to live for several years. I hope your treatment goes well and you can feel more hopeful soon. Don't hesitate to get counseling if that's an option for you.
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NickyJ, I will be thinking positive thoughts about you and hoping the test results will make you, and all of us, say "hooray!"
RangerMom, you asked about PET scans vs other scans. My opinion, based on reading every post on this discussion board with a keyword of "bone mets" :-) is that PET scans are the preferred way of looking at bone mets. I am not the expert, and you are right, the PETs sometimes show things as mets that aren't, but what the PET distinctively shows is the SUV, the uptake value of the tumors, which lets the doctors know how active the tumors are. To me, then, it's not just showing a picture of what's there, but showing how those tumors (or lesions, or whatever) are behaving. I'm sure someone else can explain it more elegantly. And certainly since you haven't had a PET since 2011, why not get one!! I get PETs every 3 months, because we haven't found a treatment that works. Yet.
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Wow, good info. My insurance turned me down about 6 mos ago for a PET and said I had to do MRIs first. Subsequently, those MRIs showed additional mets that the bone scan didn't show. I think I'm leaning towards getting a PET if insurance will cover it. I can't hurt to ask again. Thanks
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Thank you Mary,
FYI- Insurance approved for skilled care nurse to provide counseling. The Nurse/ Counselor will even come to my home. Having gone through so much in the past month and a half, my MO agreed that I needed help and fast.
BTW, like you...I have ILC and am ER+, PR- and HER -. Tumor is Grade 0. MO said that mine is slow growing?0 -
Intially, I had all tests done for comparison & now only the PET scans. MRI's are the best because they show everything, but as Rhonda said PET's are usually done with bone mets to show tumor activity and they list SUV values.
Terri
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I have nets in lung and nodes. Lately I have slight rib pain. Does a ct scan show bone mets? Thx
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barb- sorry about your rib pain. I believe that a CT is for soft tissue organs, and MRI, Bone Scan and PET show bone mets. My onc uses the MRI for my spine, but also does a CT scan to make sure cancer hasn't found it's way to any organs yet, and a bone scan for ribs and other bones.
Probably the first test they will order is a bone scan, as it's the easiest and cheapest, and is specifically for bones. It will certainly show your ribs.
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I'm wondering if I can still have MRI's. I had a hip replacement, a rod inserted in my femur, and a plate placed around the upper part of the femur. I asked the orthopedist about MRI's, but he didn't really give me an answer. That was when I was in the hospital, and still sick and in pain, so I didn't pursue it. Does anybody know about this?
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