Bone Mets Thread
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txsmom. Glad to see you. Pop in whenever you can. Yes this thread has become so hard to keep up with.
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Hi, the term ONJ is also used for a completely unrelated issue...I think it involves the elbow or wrist or something. You'd be better off actually typing the words in this case.
I'm getting a root canal tomorrow after 10 months of pain. They were only recently able to confirm the problem because it didn't present in the usual way. The specialist who diagnosed it told me that xgeva has a half life that goes on forever. She also suggested that if I had to get the tooth pulled, it would increase my risk of ONJ, but then, so would having an infection for 10 months...
Hey I forgot about grapefruit! I'm sure my one Smirnoff Ice over the weekend didn't do too much damage, but I must remember to make better choices.
I had a great weekend! We went back to the little seaside town that we originally called home when we immigrated. We stayed at a little hotel right on the coast with lovely views from our room. We went to see an amateur musical (the Adams Family) and it rocked! Man, we have talented friends! And we ran into old friends, were invited to the cast party and ran into more old friends...whose faces lit up when they saw us, big tight hugs ensued, and we were implored to return. I even got some compliments! (No one there knows about my diagnosis) Boy, did I need that. I work with some truly awful people, and it's refreshing to encounter really nice, creative people with a true generosity of spirit...in person, I mean
Obviously there is this group!My husband has to fly back to Canada for a week to visit with his father. He got the bad, bad, bad diagnosis last week. It's just a matter of months for him. Lung cancer, and it's everywhere...blood, bone, brain, liver. They're saying he's already too weak for treatment. The timing has been a challenge, which is why DH is going by himself. He won't go back for the funeral.
As for "snake oil"...
I believe in alternative therapies to augment our medical treatments. Most people have no problem believing that lifestyle choices can *cause* cancer, but seem to think it's Imbecilic to believe that lifestyle choices could prevent or cure cancer. I think it only makes sense that toxins in, stresses and reduced nutrition would cause an imbalance and lead to disease. However, there is so much out there, you have to be careful. For one thing, among the alternative crowd, it's like a game of telephone when we were kids. People who really don't know, repeat to someone, that becomes taken as fact and forwarded to someone else, perhaps with a change or two. If you are interested in something like that, go to the source. Read the originals. Some elements have even shown promise in mainstream studies!
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Milaandra,
Thank you for your thoughts on ONJ. I have been off Xgeva since Dec, 2015 and holding until I get this tooth removed, but now I've got a new problem/delay w WBC and ANC low. Surprisingly my platlettes are close to normal. I'm waiting for my next blood work to see if counts have rebounded and if they have, will try to find a window of opportunity to get it pulled. If possible, I'm going to try to skip an implant and live with a missing front tooth. I hope it's not noticeable...just kidding. Its a back molar .
Will update when I can.
Amy
PS I love grapefruit juiceand vodka too
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amy. Lol. A back molar. You scared me. Can't imagine having a missing front tooth
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Milaandra damn Greyhounds were my favourite drinks I was told on Faslodex that I have to avoid grapefruit and Seville oranges....why Seville oranges and not say a mandarins I have no clue but this rule I will try to adhere to. So true what you say regarding alternative therapies. There is a lot of crap on the internet but if there is the least documented positive results I'm in. I'm so glad you got to have a wonderful weekend gives us the strength to keep going refuelling so to speak eh? Sorry to hear about your husbands father .
Amy good luck on your blood work results and lol you got me to. I have a good friend in Oregon who is a dentist and she takes front teeth out regularly without replacements so not something that is never done. However I'm glad yours is in the back
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hi
its my very first post here...I have bone mets and my oncologist has put me on zometa every 6 weeks. I had it with my first chemo (after which I felt perfectly fine, no pain no bone ache) but not with the second one (21 days cycle) and ever since I had my second chemo, I am suffering from hip, leg and lower back pain. I don't know if its my bone mets growing or chemo working. I never had any bone pain before my diagnosis but now I feel like a 80 yrs old instead of young 29 yrs old...cant walk for long. no exercise nothing, I would appreciate any help from you ladies. my 3rd chemo is on march 25. Thanks
much love and hugs to all
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Hi Mary,
I've just finished round 4 of 21 day cycles of Taxotere and Cytoxan. I'm not on anything for my bone mets yet though. From the chemo, I can share that I have significant pain in my hips, lower back and legs and a general tiredness in my legs. I walk through it but the pain is real. (I actually find I feel a bit better if I keep moving but there are days when the hip pain especially is debilitating). Are you getting Neulasta shots too? If you are, hopefully they told you to take Claritin day before and 7 days after your Neulasta injection - it supposedly helps with the bone pain. My pain (except the hips) has gotten a little less with each infusion.
I'm new here too. Sorry you're joining us but you've found a wonderful group of women.
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MaryK, you've already gotten some great advice from Jen about Claritin if you're getting Neulasta, which is known to cause that throbbing, aching pain, especially in hips and lower back. I would definitely report the pain to your onc, just so he or she knows what's going on. He/she may want to adjust your Taxol dose or RX something to ease the pain. In the meantime, if you're not on an RX'd pain med, and if you don't have any bleeding issues, a combo of Advil (Ibuprofen) + Tylenol sometimes works pretty well, as does a heating pad.
And what in the world is going on that you and so many other very young women (like my cousin's daughter) are turning up with breast cancer? I am so sorry about your recent dx, but I am also frustrated and angry because I believe something has to be causing what seems like a mini-epidemic of very young women being dx'd with bc and mbc, often TNBC. Big hugs to you! I'm glad you've found us.
Milaandra ~ good to see you and to hear about your lovely weekend, although I'm so sorry to also learn about your father in law. Had he been sick, or did this dx come out of the blue? Either way, I can't imagine how difficult it must be for your DH to be an ocean away from him now. I'm glad he's able to go for a week.
Hugs to everyone else! Deanna
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Welcome Mary to our little group , here you will find loads of good information and kindness and stength. I can't tell you how sad it makes me when I see young woman such as yourself here. Jen had lots of good advice I found it means a lot to know you aren't the only one dealing with this disease. This thread will pick you up when your down there will always be a hand reaching to lift you up. At least that's how I have found it.
Wendy
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MaryK-so sorry you find yourself here. But, you couldn't be with a better group of women-their support and knowledge is amazing. Welcome!
Babs
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MaryK: welcome. I spent most of my chemo time hobbling around feeling ancient, too, but my treatment was effective to halt any active disease. I think it's a combination of everything already mentioned and also could be from the lack of estrogen often caused by "chemo pause". It can make joints very stiff.Your MO can be incredibly supportive. I didn't realize in the beginning, but most really want you to err on the side of calling them for everything. There is so much they can do to help manage side effects if they are aware of what they are.
I'm so sorry you are here. This group will be an incredible resource.
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it's almost 1 am and I'm suffering from Sudafed insomnia. Sudafed is actually working for my Xeloda faucet nose that was constantly running in copious amounts. Gonna eat some Melatonin the ONC said to try. I am taking 5 meds to combat the side effects of one chemo Med! Go figure. I also,feel,really goofy from the Sudafed of all things.
Patty P love to see you back on the board posting. 💜
DLB I go to Fox Chase Cancer Center in Philadelphia. The first cancer only hospital in the US over 100 years of cancer only care. It's NCI and NCCN designated comprehensive cancer center. We drive 1.5 hrs to get there but it is worth it.
I am getting punchy and goofier as I write this. I think I should spare all my rambling and try to sleep. The lavender aromatherapy diffuser is pumping a lovely fragrance and I might be getting sleepy.
Hugs, light, and hopefully my"stable" if not NED to all. Namaste. Night.
Beth
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Good morning all,
rnsparky - Could not sleep either, got up at 5:00! Tossed and turned with one hot flash after the other! I hope you got to sleep with the lavender. The red carpet service you had in ER is awesome!
MaryK - a warm welcome to you, although sorry you have to join us. We're a great bunch of women here, best place to get support, knowledge and rant when needed. I've had no experience with chemo yet so cannot help you.
Amy - good luck with tooth removal. You'll still be able to smile...
Bosco - thinking of you. How are you doing?
txmom - thanks for popping in and glad to hear from you.
Hugs to all.
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< I'm so sorry to also learn about your father in law. Had he been sick, or did this dx come out of the blue?
According to DH's mother, his father had been a bit short of breath and coughing quite a bit. Then he fell a couple of times in the shower, and she forced him to get a CT scan because he had pain. Well...the CT scan found more than they expected.
Yeah,, it's been a bad couple of years for DH.
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beth. And Linda e. Waving hi. Hope y'all finally got some rest
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is anyone in Southern California going to the dinner tomorrow night at the Del Mar Marriott? I know it's put on by Komen but I would love to meet some of you there
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Maryk wow, you are going through so much, I could tell you that my daughter is just about your age she was dx first at 25 then mets, there was a time she was on Carbo it was very strong for her, they had to change it. So, it's worth to ask, I understand everyone wants to keep the tx going as much as possible but it depends if you are able to keep up with it. Take good care of yourself. Do you have a close support team at your side? Family, good friends that did not run away?
Msparki, maybe I missed something but what's with Chase, how did you get to go there?
Milaandra so sorry of difficult times. Yep it's gonna be hard for your DH, he will be torn. But it's wonderful that he got to make this trip.
Deanna as I mentioned before, sleepytime is very helpful, but I am also taking that other pill, the Bone Strengh, I am so scared to wake up, if I have to I was told to just take more of that pill. Whatever works.
Bosco, Valerie how are you guys doing? Mary? Aurora how is your cold? I know I am not mentioning everyone by name, have a great night! And so nice to see the pop ins.
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Momall my cold is still going now it's in my chest and tomorrow I have chemo we will see what happens.
Aurora
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thanks a lot wandy, dlb, blue and Linda for your comforting words...this site is my "cyber home" now...
momall! How is your daughter doing now? Hope and pray she is fine. Carbo is indeed killing me..i was asymptomatic when i was diagnosed on february 3...it is chemo that has made me sick and weak like an old lady.
Jen, we are in the same boat in terms of side effects. I am getting neuslata (sp) shots but my onco did not bother to prescribe me any pain killer.
much love and hugs to all
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Well, my root canal didn't go so well. Two of the three canals are calcified and the dentist couldn't find them! She's going to try again on the 5th, and if she doesn't have more luck it will be back to the specialists with the microscope tools. Who only knows how long that will be! My worry is that the infection will get systemic while Mike is away and I have no one to check on me. It's awful the little things that become so huge when we're vulnerable.
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Milaandra, I'm so sorry about what you're going through with that needed root canal. If your dentist couldn't find the canals this time, I don't understand how that will get easier the next time around. Unless it's just too long a trip or too prohibitively expensive or other complicating factor, it seems to me like the need for a specialist has already pretty much been ascertained.
As far as being alone, don't you have a neighbor or friend who can check on you? I know sometimes it's really hard to ask for help, but I think your concern is a valid one -- no so much that the infection will become systematic, but just so that you're not entirely alone if you were to need help for any reason. And are you on a strong antibiotic? I'm so sorry you're going through this, but I agree with you about the concern that it could, if not become systematic, at least worsen while you wait to see her again, with no assurance she will be able to solve the problem. Hmmmm.... Not trying to worry you -- I'm just worried about you. Deanna
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Ally, I meant to respond to your question... I'm in So. CA, but out in the Palm Desert area and hadn't heard about that event until you mentioned it. My negative feelings about Komen aside, I looked it up and it looks like a wonderful program, with Susan Love as a key presenter, talking about research. I hope if you go you'll take notes and fill us in. Deanna
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Milaandra,
I wish I could pop over and check in on you during the time your DH is away. If I weren't traveling to help my elderly parents in a couple weeks, it would be the perfect opportunity to visit your beautiful country. I am completely serious. I'd do it.
Instead I'll say prayers that all goes well. I do hope you have a neighbor you can rely on for help, if needed. Good luck to you.
Amy
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MaryK87 - I think I welcomed you on another thread just a few days ago (Fitness, maybe?) but hello again... I only pop in once in a while but am determined to be better as reading all of these posts always lifts my spirits, if only because everyone is always supportive, understanding, encouraging and such a wealth of knowledge... the kind that you don't usually (at least I didn't) get from your doctors. I also think Nuelasta is probabably the main issue.... I can honestly say I'd forgotten all about that drug until Deanna mentioned it, but memories of Claritin and of pain came back. I think I mentioned in my last message to you that chemo was horrible for me and I literally didn't move for six months. (really bad idea.) Are you on any other type of painkiller or hoping to avoid it? I've probably mentioned this too many times on this thread ( I feel like a drug pusher) but I was on a very low dose of methodone for a long time .... really low dose...and it was like a MIRACLE drug. Totally took the pain away with no dulling, etc. side effects. Just an idea.
Hi to everybody else. I am supposed to be in Southern CA this evening and would have loved to have attended the Koman dinner had I known about it, but am in Denver in the midst of a big March snowstorm - DIA completely closed and all flights cancelled. Not making me very happy as I was really looking forward to the Southern CA sun... the heat DOES help my bones/body feel better!
XO
Andrea
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milandra. Ouch.
Well yesterday my best buddy shoots me s pic of a lump that came up by her collarbone. It doesn't hurt but it's huge. She had cancer before I was dx the first time but in 2002. She was a huge support for me then and has been even more of a help this time around for me. Bringing food. Setting up a donation svct at Bank and takin my kids alot. Ds2 has spent nearly every sat night with them for awhile and going to their church since riding has been so hard on me. I don't know what to say. She is sure it's progression. She sent pics to mo today and they set her up for ultrasound and then mo appt tomorrow. Obviously they are concerned to get her in so quick. I've mentioned it might be swollen lymph node or benign tumour. She has 2 children my dss age. I am so scared for her and her family. Those who pray I am asking for prayer for her.
Today all the activity I been up to this week as caught up on me. Been a hard pain day and I've done nothing. Thankfully dh took off work and took dss and friends to laser tag and bowling. Glad they got to do it but sad I missed yet another fun day with them. Ds2 has a friend spending the night so I am trying to hang tough for awhile before I head off to bed and leave dh in charge.
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Hello all!
Welcome to all the new ladies here, sorry you have to be here, but it's a good place.
I did a stupid thing this week, after getting my labs the RN asked if I wanted my port to stay accessed. As it takes them 20+ minutes to get me hooked up, I thought why not? what could it hurt? Stupid, stupid, stupid. I've had the needle access along with a little tube with a clamp & end taped to my chest since Monday. I can't shower without wrapping half a box of saran wrap around me, can't sleep on my stomach, which I don't normally do, but right now that's the only way I want to sleep & my skin is reacting to the tegaderm causing it to itch & be all red & inflamed. I can't wait to get this stupid thing off me.
It will be my cruddy feeling weekend, so hopefully I'll be able to get caught up on this thread. Happy Easter weekend. The tourists are already here!! Is it summer already? They aren't supposed to be here yet, but there were so many new faces in the village.... looking lost. ;-)
Take care all, cheers, Dee
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You are all so sweet! I'll come on a lot and chat about silly things so you know I'm okay. I'm working today and tomorrow, then Tuesday and Wednesday. Mike will be back on Thursday morning.
I mean, it's been 10 months of infection, so I think I'm just concerned more now because Mike is away (over the big blue as we speak...and wouldn't you know it, a big freezing rain storm in the GTA!!). Well, also because of the fact she said the one she cleaned out bled a lot... No, I'm not on antibiotics, but the couple of times I did take them over the 10 months, it didn't seem to do much anyway.
When I was looking things up, one article suggested that patience is important when trying to find a calcified canal, so maybe that's the reason why she wanted to try again at another appointment...or she didn't have time to keep messing around. The problem with the specialists is time...the one I saw who diagnosed this said that it would be September or October if I went through them. Frankly, I'm sick of this!
Actually, I don't really have anyone here. I'm in an ethnic neighbourhood, and my only neighbours are nice, but have a million kids to care for. The people here who know about my diagnosis aren't particularly friendly, and the people I consider friends (mostly from our first town) have no idea and I'd like to keep it that way. Everyone else is far, far away.
Dee, I'm so sorry you are so uncomfortable! Frankly, pic lines and IVs have always given me the heebie-jeebies. Can you go to the emergency and get it taken out? A bad skin reaction is enough of a good reason.
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Good morning all,
Patty - sorry about your friend and praying it's B9. I plan to take it easy as well today, kind of overdid it lately.
Milaandra - I live alone and sometimes wonder what I would do if something happened. Lately, I leave one door unlocked at night in case... My neighbors are very helpful and we help out each other, but they are in Florida for the winter. We both have keys for our houses, it's comforting for me.
Dee - that sucks. Hopefully this pic of Praline will put a smile on your face, or not as she was groomed with a spring cut. She will have the Cocker look again when you come down this way!
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Praline is gorgeous! She has that regal look on her face.
Milaandra, Wishing you good results as they try to complete that root canal for you. I hate root canals. Have had too many.
Dee, Frustrating to hear about the port. I would just want to get it off too.
Patty, Bet your children were thrilled to be with you this week. Did your rest help a bit?
Andrea and Mary K, welcome and good to get to know you.
Andrea, The storm you had in CO is just leaving us and heading to the East. We only ended up getting 10 inches but zero would have been better! The robins are shivering and frantically looking for food.
Beth, Christina? How are you doing?
Hope all of you are having a good day. Best to all...
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Just a quick rundown of the Komen dinner for those that are interested. There was an open bar before the event where you could also tour the mammography bus. When it was time for the sit down dinner I happened to be put at a table with an executive from pfizer. I thanked him since i get Ibrance for free due to a program that they run. He had no idea what I was talking about, and said he was on the other side of things. He then made the mistake of telling me that they considered putting up a metastatic display, but thought this wouldn't be the right event. I laughed out loud and said that was a terrible decision. He also asked if I have seen the video that shows women living their daily lives with metastatic disease. I told him it needed to be updated because someone on there lost their battle. He was sorry and had no idea. I told him to watch "run form the cure." on netflix. By the looks of all the people there It was mostly corporate to me anyway. I really didn't see anyone there that was going thru treatment although you wouldn't know I was either by looking at me. Before the speakers started they passed out a form for you to give a donation via check or credit card ranging from $5000.00 on down. Dr Susan Love talked about the fact that we are living in a time of precision medicine, an immunotherapy vaccine, and two new drugs that are being developed that show a lot of promise. Did not mention the name of these drugs. She also said besides humans only domesticated dogs and manhattan monkeys get breast cancer. I thought that last part was strange. Steven Eisenberg was the oncologist that spoke and his main topic was how we live in a time if your lucky enough you don't need to even have chemo. This of course does not apply to everyone so I tuned him out real quick. They gave away some very nice gifts candles, ovation hair kits I left mine on the table. I received my ticket for free from my Dr. who couldn't make the event. I have a hard time with Komen since I called them 21/2 years ago to see if I could get a free mammogram only to be told the funding wasn't there at the time. Fast forward 3/15 and I got the shock of my life. Oh well I try not to dwell on the "what ifs."
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