Bone Mets Thread
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Thanks Ladies for all of your advice in regards to my friend. A couple hours after I posted my question I ran into her at the grocery store. I asked how she was and she told me that her dentist had told her that she could be experiencing the headaches from grinding her teeth in her sleep. I've never heard of such a thing, but then there's a lot I've never heard of. Anyway, I did also ask if she planned on seeing her PCP and she said she didn't have an appointment yet. So I'll just have to wait and see when I see her on Sunday.
But on the brighter side (no pun intended), the sun was shining here in Salem for about two hours today and with all the gray weather & rain we've had in the last couple months, I'll take every little bit I can get. The gray really challenges my happy bubble.
cristina - I don't understand why you would feel humiliated because you are in pain. You have every right to have it taken care of and the E.R. sees plenty of other patients with pain issues. So if it could help you get through the weekend, you might want to give it consideration. I will continue to keep you lifted up in prayer.
aurora - so glad you're on the road to recovery. Also, I have a friend who moved to Tampa from L.A. a couple months ago, so I'd guess you guys are getting to really enjoy the sunshine.
Hope you all sleep well. I'm going back to watch the movie I rented earlier.
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Kiwicatmom, love the story! I am a huge cat lover. Thank you for everything you do with cat and kitten rescues.
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JFL & Anniemal---I have a dear friend who was dx during pregnancy, She also was dealing w/a toddler too. That was 19 yrs ago. Her son is very smart & athletic. My friend is an amazing quilter & credits her quilting for seeing through a rough couple of years .ok need to get to sleep, funeral in morning for 41y/o mom/wife/teacher who died last week from pancreatic Ca. I am mainly going to see how our priest does. That may sound crazy, but I really want to lessen that burden for my DH when the time comes. Love to all Su
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I posted this elsewhere, but I wanted to be sure that you all saw it. Please make the time to watch! It's so impressive and hopeful!
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Thanks Deanna, the link is promising for all of us.
Sue would you please tell me more about Quadramet/Samarium or PM me?
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Thanks Deanna! It really does sound very exciting !
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Good morning all,
Dee - congrats on TMs. But don't you just hate it when they "forget". Does that mean another ferry trip soon?
Aurora - glad to hear your good update! I will pm you if you disappear too long from the thread! Always love to hear from you.
Terre - you are one amazing lady and thanks for the chuckle, OMG!
Cristina - another thought I had. Here in Quebec, if I run out of meds before my next Onc appt, the pharmacist can contact the Onc or the one replacing to have it renewed as long as there is an appt in the near future. Wonder if that could be a possibility for you.
Deanna - thanks for the link - very interesting!
Patty - thinking of you.
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lindae. Hug
Good morning
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Sue2009, thanks for the encouraging story! I am curious to hear how the funeral went. You raise a good point about watching how the priest does it. So many odd positions we are in with this dx. Shortly after I was diagnosed with Stage 4, I had to witness my boss and my employee telling me the shocking, saddening news that one of our close coworkers (a male) died of breast cancer. He and I used to share war stories about our earlier stage BC. One of the few people I talked to about the details. It felt like an out of body experience. I found myself thinking "Was that how they were going to react with me some day?"
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Dee - Great news about the test results! Hope you can take a few days off from thinking about MBC!
Lynne - I admire you for being able to provide such amazing support for your DH during this time! It will be so good to get home.
Cristina - It's hard to imagine a doctor who would recommend pain meds and then refuse to prescribe refills. There is no excuse for putting professional courtesy over patient care. The ER sounds like a good idea! This disease has enough things to make us feel bad about ourselves without those we trust piling it on. Hang in there!!
Kathryn
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Lynne, I've had the same thing happen with an emergency biliary stent and massive infection. The stent procedure literally saved my life (my liver failed and I had acute pancreatitis at the same time-- just a huge mess all around). It was rough going there for a while. I couldn't keep my thoughts straight nor remember anything for a couple of weeks afterward, which scared me half to death, but I learned later that elevated liver enzymes and/or liver failure can interfere with cognition. So there ya go-- just in case you needed to know that. I'm so glad your DH got the intervention he needed! Take care of yourself. You've been a fantastic sweetheart to him!
Cristina, heavens to Betsy. I'm scrambling to think of things for you that have helped me in the past with bad bone pain... I have used a spray called Stopain on my spine. Got it at an ordinary drug store like Walgreens. It does help! I was given an essential oils roll-on formula by Young Living that was quite effective, also-- Panaway. And I have used an analgesic gel called Sore No More (it might be more for muscle pain, but my muscles can get tight from "holding up" the bone pain). I got it from Amazon but I've also seen it at drug stores. If you can't get help and you can't get to ER, at least keep good music playing-- it truly does lift pain levels. Water eases pain, as well. Wondering if there's a float spa where you live? They use enough epsom salt in body-temperature water to create a zero gravity experience. It always did wonders for my bone pain (before I started on Xeloda-- I can't be in water that long now due to HFS risk, darn it!). If there's no float spa nearby, an epsom salt bath at home could really help. A neurotherapist told me she dumps up to five boxes in a large tub for her patients! Also, I learned when my children were small that liquid Advil is like magic juice and works faster than the tablets. Just be sure to measure it carefully so you don't take too much! Golly, I hope something here helps you. Bless your heart, pain is the worst.
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Thunder storm rolling thru & I can't sleep. JFL-- the funeral was beautiful, she was teacher at elementary school close to 18 yrs & family came from Costa Rico, had to have been over 500 people there, & they brought in a Spanish speaking priest just for her family. The reception afterward at HS cafeteria was put together w/help from band parents & her elementary friends, I feel so blessed to belong to this community, they really band together to help in these situations. Our priest has also told congregation that they never charge anything for funerals & will do a funeral mass for anyone upon request, even if they were not catholic. This knowledge came in handy last summer when my uncle died unexpectedly. The funeral home wanted to charge my aunt $3000 for its services. I remembered going to their confirmation a few yrs back & told her I would look into her church. Long story short, we did the funeral mass at church, the funeral home guy wasn't happy w/me, called me a bulldog when I pressed him to cremate my uncle & tell us the cost, which I said was too much, I was surprised he took $500 offthe quoted price. My aunt who is on fixed income thanked me profusely for the money I saved her
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Haven't been by lately it's been crazy, my dd Emma (she has 9 brain tumors) had emergency brain surgery on Thanksgiving and New Years Day. If you remember I said that our family was starting a fundraiser to get us into a new house...we bought a house last night moving in 24 days...but in that time, Emma scans (last was good, chemo seems to be working ) she is getting a port, and she gets restults...that will involve 2 full days in Madison. ..and I scan, first since starting treatment and get results and my Faslodex/ zometa on what is my oldest son 20th birthday. ..plus getting my house that we have lived in for 18 years packed...I am feeling pretty good though so.....
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good afternoon all
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Hi, Patty! How're you feeling?
Keetsmom ~ My goodness, you've had your hands full! I hope you can find some help to pack, but how wonderful that your family could help you get into a new home! And it's wonderful to hear that your daughter is doing well after her need for emergency surgery. That must have been very scary. Did you tell us how old she is? (Sorry if you did, I don't recall.)
Sue, I'm so sorry about your friend's passing. So young. I would never have thought to check out priests or funeral services, but it sounds like a very loving thing to do, and good information to assemble in advance. I'm glad you were happy with the priest you checked out.
Happy Sunday to everyone. I am getting a bit worried about Myra and just wondering if anyone has heard from her. Deanna
PS ~ I just checked, and Myra did post on the Xeloda thread earlier today. Myra, if you're reading, please let us know how you are. I think the last thing you told us was about your hubby finding you unresponsive. Are you okay now???
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Hello to all,
Patty, how have you been feeling and is dh better?
Keetmom, wow you have alot on your plate right now. I'm so happy to hear Emma's brain surgery went well and that the chemo is working. I couldn't even imagine a move right now, I would find it so stressful. I am glad to hear you're feeling good and I'm praying for your scans to show good results. Blessings to you and your family.
Sue, so sorry to hear about your friend. How nice of you to help your aunt with the arrangements and save her some money in the process. I recently had to help a family make arrangements for the burial of their mom who passed away from breast cancer. They struggle financially so they were grateful for my help in giving their mom a beautiful funeral service.
A snowy windy Sunday here today. Filling the day with laundry and cooking. Getting tired now so I think it's nap time.
Hugs to all, Annie
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Hi ladies,
I feel like I should update you for sure after all the concern you've shown me. Friday afternoon my onc's nurse called back and called pain management and within 5 mintues they called me and said they would send the oxycontin 40 mg downstairs to the pharmacy to be filled. The pharmacy closed at 5:30 and I had to drop my daughter at a birthday party at 5 pm, but I made it to both and got my meds. So, relief about oxycontin. Now, the Subsys for breakthrough: the pain management still is refusing to refill until the 20th, but my insurance said a refill on or after the 16th was ok. So why are they making me wait? Obviously they don't trust me. The pharmacist sounded so upset, she knew I wasn't faking or some druggie. I am going to call pain management refills AGAIN to leave a message, clearcut, and see where it gets me. They are simply awful.
I just read the posts about liquid Advil, but I had just run out to the store. Next time I go out, tomorrow, I will pick up liquid Advil instead of the generic pills I have. I think that will work better for me. You ladies are so awesome to me. I wish we all lived closer so we could get together. I will also use the heating pad, that will help.
Dee- Woohoo for lower tumor markers, in the NORMAL range. That is just so awesome!!
Deanna, I think I do remember one post after the unresponsive post from Myra, and I think it was here, that she didn't have good access on her phone and would type more later or when she was home? Hopefully when she's able she will check in.
Sue, I honestly never thought of checking out a priest beforehand, that is very thoughtful to do that for your hubby. I have so many things to take care of, but honestly I feel intimidated by the whole process. I know I want to be cremated. That's about as far as I've gotten.
Hi Patty! Hope DH is better, and hope you are feeling well too!!
Hugs and love to everyone I didn't mention individually!
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Emma is 13..we have been dealing with her brain tumors since 2007, although the move will be stressful, i have lots of help and in the end it will make life so much easier, it is so hard for her to get up and down our stairs, she pretty much gets up in the am and if she needs anything we have to get it for her so a 1 story house will be amazing..23 days until it is ours ☺
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hi what are FDG avid / non FDG avid sclerotic osseous lesions as described in a pet scan ?What does that mean for a layman?
I'm looking for answersfor my mom who is fighting this disease for bone mets
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Sclerotic osseous lesions can be the other type of bone mets. Lytic creates holes, sclerotic is some sort of calcium thickening. I think they are more difficult to diagnose, but that's a guess. See, when I got my first bone and CT scans, I was told there was something showing in my neck that the film reader said was a possible sclerotic lesion, but the diagnostic team thought it was degenerative. (Which makes sense, since I had a couple of bad whiplashes in my earlier life)
Now, as for FDG avid/non avid. I'm not entirely sure, but it seems to indicate the uptake of the PET scan fluid. I think an FDG avid lesion would show metabolic changes (i.e. cancer) by having sucked up more of the stuff and glowing brighter, but non FDG avid lesions would be more difficult to accurately diagnose as cancerous lesions because of the limited uptake.
Don't take this as gospel, though! My team doesn't give me PET scans. I just figured I would try to answer since it's been a while since you asked the question.
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blessings required. - no help here. Someone surely will be by soon that knows what if means Detail.
So dh doing great but I caught it. Not sure if i said that Before. ??? Darn memory. Anyway wasn't near as severe for me thankfully. Still feel exhaustion to the very core. Feeling better by the hour.
Brb
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Good morning all,
Keetmom, thank you so much for your update and so happy for your good news. Busy lady you are.
Cristina, what a relief it must be for you!
Milandra, quite a good explanation. I learn something new every day.
Blessings - Wishing your Mom the very best. Keep us posted.
Lynn - One more night in the hospital. Home sweet home.
Patty - how are you? Big HUGS to you!
Annie - hoping your windy snowy day doesn't end up here.
Myra - If you're reading, know that I'm thinking of you.
Wishing everyone a good week!
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FDG-fluorodeoxyglucose. It's the junk they inject in you in a PET/CT scan.
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lindaE. I guess we posted at the same time. Big hugs right back at ya. Is praline ( hope that is dogs name ) keeping your feet warm at night ?
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Christina. Yea. At least you got what your immediate needs are. I get ALL my meds from mo. I see pain mgmt for surgical tx's. Mostly for fractures. I do know the new fed laws are so hard on dr and pharmacists that they have to walk a very very fine line. Yes the do keep days web base so no matter where you go they pull up your records even hospital and and dr office. Do changing Drs won't fix the problem. Your mo really really should handle pain mgmt for you even if it is over the phone w/pain mgmt clinic. ??? It's a good idea for preventing so much rx drug abuse is going on now. However there has to be a free pass card. I know my mo writes on each rx for both pharmacy snd insurance : Stage iV
Metastatic
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hi thanks for the update .. So in any way are the screlotic lesions better than the lyticones ? I hardly get to meet the docs as I stay apart from my mom , so I lurk here n there for answers
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Blessingsr one might say this, if you are into reading i am sending to you a link that I know of:http://www.ncbi.nlm.nih.gov/pmc/articles/PMC313430..., basically if it's a PET/CT you are referring to maybe you could get a copy sent to you,(via phone, scan or fax?) and you could read for yourself. But as you see in this thread that is much tx that could be given to help out. It's terrible anxiety driven to know and not know, sorry you have to go through this.
Deanna - love the link you sent. I was already familiar with Dr. Patrick, he's so intelligent, I heard it, but I gotta hear it again and learn. How are you coming along these days?
Aurora wow what a long trip for you, but your attitude is great and hope soon you will be going at the speed that you are looking for.
Dee - oh soo soo happy for you. Enjoy!
Lynne- you know I am never gonna forget a heart surgeon telling me this: It's a small surgery for me BUT a big surgery for you. (when my hubby was going through it) There it is. Mom had (may she rest in peace) contracted Sepsis from a "small" procedure in the urologist's office, We had just caught it in the right time. You should know the hospital did send my mom home with a PICC line, ther were nurses coming to check on her, and we injected the antibiotics other times. Just saying that if they do send you home with a PICC line... You are a terrific wife and partner, you really need a rest after this one. Prayers your way....
Jazzy you know he could have been referring to TMJ, which yes it could be very debilitating and one can have major headaches, but if you could still prod her to maybe get an MRI as to really see the cause of the headaches...could be migraines...you certainly are a good neighbor!
Cristina yeeh for you. It's sad that you have to fight for pain management.
Patty everyone is coming down w something. Hope you get better real soon.
Keetsmom counting down with you. Really hard to pack when so much is going on. Take good care.
Linda I count on you being there, thx.
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FDG is the tracer injected in a PET scan. It is a form of glucose I think and the scan measures uptake. So I have always understood avid to mean cancer detected and non avid the opposite. So if your report says non avid that is good. A scan may also show reducing or increasing levels of uptake when compared to previous scans which may help w understanding whether treatment is working. Ask your onc to explain it better.
I don't know about the bone lesions
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Blessings, screlotic lesions can be both osteoblastic lesions and healing bone lesions. As osteoblastic lesions (bumpy bone surface caused by the bone making more of itself under the cancer attacks), in comparison with its opposite, osteolytic lesions (holes in the bones caused by the bone retreating from the cancer's attacks, osteoblastic lesions suggest slower growth of the cancer. That is, when the bones have the time to resist against the cancer's attacks, it produce more of themselves. When the cancer's attacks are more speedy, the bones will have to retreat by removing themselves from the cancer. So, in either case, screlotic lesions are more favorable. Hope it helps.
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Hi All,
I'm behind on the posts, I will get caught up later & post.
But in the meantime I have a question. Now that my bone mets seem to be healing, will the pain eventually go away on it's own or do I have to have that met radiated? My hip is waking me up around 3 or 4am & then every hour til I get up. I need my sleep but worry about the amount of radiation.
Take care everyone, Cheers, Dee
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