Bone Mets Thread
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CJRT it is Shands Cancer Center U of FL in Gainsville. Someone posted about it on this thread a short time ago. They have a VERO machine and the Dr is Paul Okunieff. He believes that people with limited mets should be treated with a cure in mind. The machine does SBRT and so precise that you usually get 5 treatments as opposedd to 30. If you search his name on youtube there's a short video about it and two patients that he treated.
Caryn thanks, that is I want, to go for the kill!0 -
I am 46 years old. I am still on tamoxifen. I'll have a second bone scan in March. If it's stable, we keep doing what we're doing. If it's worse, doc says we'll "regroup and talk about other things". I take Lortab for pain, which is mostly tolerable during the day. It becomes worse in the evening. I take about 3 pain pills a day. My doc says if I start taking 4 or more, then I'll have to do something different, like a patch. I'm doing my best to function normally but it's hard as you all know. Thanks for the welcome and hugs. )))))).
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Good news Krazywolf. Hope you are getting lots of rest and help.
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Loved reading all your different scan results, onc impressoins, RO impressions etc. I say its all a crap shoot! WTH...I can add to the madness...my onc says she doesn't like to use mri's because they will always come back abnormal, she likes to use bone scans as her first go to scan for a whole body quick overview for stabilization, however, she admits that bone scans won't always pick up new mets....and since I had bone pain that wouldn't quit,she went with the 3 MRI's. There was some new areas on the MRI that were kinda of thereon the bone, but the new mets on the lumber and left hip did not show on the bone. We are doing radiation on the left hip and sacral spine, 1 more month on the Faslodex, then a PET scan. Just had shots today. She says she's not going to let me go down the path too long before we check on the status of progression and she feels the PET will give her a more accurate full body scan vs the bone again. I'm learning more to go with the flow, to have faith, and to have lots and lots of patience. She said the mottled marrow pattern is also from chemo and what it does to our bones. I feel like these scan results just continue to beat you down into submission till you just can't worry too much any more about what's new, whats old, it takes too much energy
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Caryn, I figured that out when I realized that other post were showing up under our profiles. Strange things but glad that the moderators got it fixed. I didn't remember your saying before that you had a fracture and had to have the kyphoplasty.
Susan, don't be afraid to ask for stronger pain meds. I was placed on Vicodin initially and we kept increasing and then it was Oxy; however due to the high cost of the Oxy was switched to Morphine. I know I was told by my oncologist he didn't want me to hurt and think most feel that way. Each oncologistis is different and that has certainly shown up this week in the discussion of scans we all have have. My need of pain meds didn't mean a change in my treatment. May take a few days for our bodies to adjust to the pain meds but we do and it helps us live more normally. Just wanted to say, you don't have to hurt.
Original diagnosis 8/18/2005, IDC, 3cm, Stage IV, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2- Mets: Nov. 2012; extensive bone, small lesion of liver and small peritoneal mets
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Hi all. My mom met with the radiation oncologist today and was told that she will get 5 treatments to the clavicle lesion and the T5. He said that if it weren't for the spine that he would only do one single treatment to the clavicle but with the spine they want to spread it out a little. I keep reading about others here getting 10, 15 and more for their spots and I wonder if 5 is enough? I understand that it's for pain, but isn't it also supposed to help zap the buggers so they're not active? I am all for them (doctors) making my mom's pain better, but at the same time we're not just looking for comfort -- we want the best fighting chance at knocking these mets back for as long as possible. I didn't even think to ask the oncologist.
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Canadagirl........perhaps the dose your mom is getting is different and that's why only 5? I've heard everything from1-25.
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CanadaGirl, both my ortho and medical oncologist thought I would only need 10 to the left and right femur. However, when I saw the radiation oncologist he made the change to 10 to the left (had 10 there earlier and have since had a rod placed) and 25 to the right femur. The radiation oncologist may change the number she gets but before she seems him is a good time to write out questions about strength/number she receives; pain relief and/or knocking back the cancer.
Another thought is that the clavicle is near the lungs, heart and they like to be careful when they do radiation in areas that other tissue could be damaged. In my receiving my current treatments with both femurs/hips and ischium (bone we sit on) radiation oncologist told me he had to be careful not to get my bladder - that he had a very narrow window in which to work. I was thankful that he was open and said that as neither do I want to deal with a bladder that has been burned by radiation ! So it could be something like that with the clavicle also.
Again, you have time to write down your questions.
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HLB I have also spoken to the intake person at Shands and I am going to speak to my MO today about the possibility of going to Shands and persuing the SBRT. If anyone else is looking into Shands please keep us in the loop.
I will let you know what my medical oncologist has to say.
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Thanks ladies! I want to stay on top of the docs and make sure she's getting everything she needs for the pain as well as to kick butt
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teacher- i am supposed to get the intake packet from shands today too. a radiation oncologist friend of the family gave me a little information about it in the meantime. he told me to look into the SBRT in general, as well. i will try to find the website that lists the places that do it and upload it. he gave me much more technical information about standard treatment recs regarding conventional and SBRT.
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Here is a list of SBRT facilities with brief descriptions of what they treat. I plan to contact ones to find out about bone mets. http://www.ncbi.nlm.nih.gov/books/NBK55736/
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Teacher, great! Keep us posted! I got a call from them but did not call back yet. I'm thinking I will wait until my scans which are 3-29 and then see what they say about my situation and if I need to send records or what. I was a little confused when researching because I brought up a list of everyplace that does sbrt and there were hundreds, but there must be something different about this because they said there are only two of those vero machines in the country. Anyway, can't wait to hear what they say for you!
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I had horrible pain in my pelvis/sacrum. They 10 rads promising me that the pain would subside. It didn't because the tumor grew faster than the area they were shooting. It was clear that I could only receive 1 round of chemo in that area. The pain was so excruciating that I was on the patch and narcotics.
I became so far behind in my constipation, that I had to go into the hospital. While I was there, they installed a pain pump that drops the morphine directly into the spine like an epidural. Since my dose is so much smaller, I feel normal. (It did take me a few weeks before I felt comfortable driving a car.) I'm so happy that I never have to worry about taking pain medication, I only have to remember to get it filled before it runs out.0 -
HLB- I am by no means an expert but have been researching since you told me about UF's program. A radiation oncologist said that the brand of machine for different types of SBRT is largely a gimmick. I do not know if this is the case or not, but it may be a question to ask when you are calling around. This is what was told to me "off the record" - "early aggressive therapy to maintain high KPS for young high functioning patients and highly selective low risk therapies to minimize the risk of a bigger KPS drop for poorly functioning patients." FedEx just arrived with the paperwork, so I will let you know if I read anything different.
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I'm glad the pump makes you feel better, SPAMgirl. I'm amazed at how quickly my pain has increased since my diagnosis a couple of months ago. It started out with rib pain, now my ribs don't bother me at all. My hips and pelvis hurt all the time. I see my oncologist Wednesday. I guess I'll see what other options I have for pain management. I've always been of the opinion that I shouldn't take pain meds, only as a last resort. I'm learning to change my mindset and accept the fact that it's a part of my daily life now.
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I need your input please. I found out this week that my CEO in a meeting with upper mgmt said these words "Linda's so called disease" My coworker was complaining to him that she is haVING to do so much more work and tI think told him that I just had new arthritis in my spine, but I don't know for sure what she said to him. Anyway, one of the persons in that meeting told me what he said and went to HR because of was highly inappropriate. However, I can't divulge her confidence that I know about this comment. Has anyone had any situation like this where your boss was saying something deragatory about you to others but you weren't in the room. I'm so upset about this.
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More bad news I had today, my insurance said they wouldn't approve the 3 MRI's I had done last Friday? I had them before I got the notice. What happens now? I guess I will call them Monday and also ask my oncologist about it. The 3 MRIs found more cancer that the bone scan didn't
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Ranger mom, I'll say you had a bad day today. Regarding the CEO comment, we call that hearsay. You weren't there and didn't hear the full discussion, so I'd probably leave it alone for now.
And, yes, speak with your oncologist about the rejected MRIs as they should have got approval for you before they did the tests. At least that's what's done where I am.
I feel your pain. I really do.
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I know, you are right, it is heresay. At least that person did go to HR and tolk to them because she felt it morally wrong what he said and her conscious (sp) need her to speak up. I don't want to cause her any problems so I can't divulge that I know about what he said.
GRRRRRRR
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I'm really debating on continuing to work there though, with someone like him in leadership and the others too afraid of him. Should I go on STD and concentrate on me and the radiation coming up. My complaining coworker would have an even greater workload on her which I really dn't want to do, but I've got to decide what is best for me. I do have lots of other wonderful people there who support and care about me
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Ranger mom, I really haven't the answer to that question. I don't know how old you are or what your financial status is. I've been reading your posts for awhile, though, and it strikes me you're leaning toward STD. And retirement.
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CJ, I don't see how it can be a gimmick as many hospitals are doing it, but who knows, if he is a radonc and he thinks that maybe its true. I doubt it though. I'm not sure what that statement is really saying. Is it saying they do it to obtain a high kps but that it doesn't improve survival? Maybe I just don't know enough. Anyway, it seems pretty legit as its a university hospital. I guess we will see. Keep us posted!
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Thanks Tree. I'm struggling with deciding. Maybe that old saying about not making any decision if you're not sure applies here too.
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I would be upset too Rangermom. But I'm glad she went to HOUR and that they are aware. If its a viable option to quit I would sure as hell do it! Who needs that nonsense with what we are dealing with, and esp the petty coworker complaining about her workload. People are so petty! Its the management who decides to never get enough staff to get the work done and the stupid pettys blame each other. Cannot stand to work with such people!
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Opps it should say human resouces, not hour! I have my phone set up for common abbreviations.
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RangerMom, can you take FMLA to give you some time to think it all through? Apply for STD, SSDI, possibly LTD (if you have it available) while on FMLA? And check on accelerated life insurance benefits? This is what I did, it made the "decision" very easy once all was approved and I knew we could handle my "retirement" financially. And I had a job I absolutely loved!
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Last time i posted here you guys had gremlins. Hope i don't bring them back..
Interesting to hear all the different treatments/ Scans/ and all of your opinions.
Rangermom- I have never been put in a situation such as yours. I would try not to take any action at a time when angry,but i would also have a difficult time being near some of those people.
With regards to your MRI's sometimes the oncologist can influence the insurance comps..i would try.
Hope everyone has a good weekend. Jena0 -
Rangermom, I was in a similar situation and came to realize the stress of it all was "killing" me faster than the cancer. I also realized that any treatment I was having was being undermined by my own stress. I was extremely upset most days. Also, I had a co-worker similar to what you described and she tried to make me look as if I wasn't doing the job and was somehow difficult to work with - all of which was totally untrue. However, since she had been there a while, others were easily influenced as she was highly manipulative. One day I said to myself, "Is this how you want to spend your time?" Bottom line, I had to do what was best for me. My advise is to look over all and any benefits you may have (big picture) and go from there. I also agree, don't do anything impulsively; however, get your ducks in order (quietly)!
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Rangermom: You're friend was right to take her concern to HR, since she was present when it was said. It was an egregious comment and hopefully HR will counsel him. Regardless, it certainly is a red flag and I would begin documenting your heart out.
I have had a very supportive boss and colleagues. Indeed, when I returned to work after a month out (and previous months where I was out more than in), I kind of felt a little marginalized. Life went on without me and how do I slot myself back in? But I also know that as time goes on, people wonder why you still need accommodations. It is not only difficult for us to deal with chronic disease, but to those not experiencing it they can become disconnected. That sense of urgency wanes. We all live in such a surreal place.
And get your MO to hold back the insurance company. They should have had those scans approved beforehand. Shame on him/her/them! Oh, the joys of navigating the medical world.
Thank you too all answered my questions about the frequency of rads. Your replies were really informative and helpful.
Scorchy
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