Bone Mets Thread
Comments
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Krazywolf, I am excited for you that your doctors are so optimistic for your treatment. Mine, as with most others here , said treat as chronic illness. I doubt that I will ever be off treatment and will be grateful to have 5 years. I am not sure there should ever be a Stage 5 thread if that is a "no cure" level. That leaves no hope and we all need hope in this fight. Is your treatment at a Cancer Center or a private oncology group - sound like they have you on a aggressive treatment plan .
FairyQueen, massage and elevation has definitely helped my leg. My lymph nodes are enlarged in the groin area I realized when I started the massage. Sure that is from the radiation treatments.
I saw the orthopedic oncologist today after lots of xrays. Left femur with Rod looks good as does the right side from all the radiation. She also checked my right humers and felt it was ok at the moment - thank goodness. Now after the awkward position to get the xrays and the hardness of the xray table, my back is in spasm. Taking lots of Morphine but tears still happening. Can't take Motrin, etc., because of the blood thinner. Was referred to spine specialist today prior to all of this, looks as if that is something I truly need. Trusting tomorrow will be better - just need to get through tonight.
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Naniam - sending gentle hugs and prayers that the pain will subside soon. AJ
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Krauzwolf, I love the attitude your medical team have. If every doctors were like that we all would have some type of hope. I have bone mets I have great days and bad days. I don't know if I will ever meet Ned. (I still hope anything is possible) But I will take stable anytime. My doctor always says that what we have is not curable at all at this time but diffently treatable. he says many women live with this disease know a days a long time but with some sort of treatment. Treatment is what keeps them alive....
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Caryn, exactly what I say.. What is curable? Lol. I just don't want to end up living out my days with the dreaded thought that it can come back to life any day and is today that day. Five years, wow, to think, I'm a ticket holder in that lottery in all actuality, scary crap. I wish you the best sister. Rock on.
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Yea I do have a great team guiding me thru this. And yes that its true in that its the treatment its what's keeping us'afloat'.... I'm stillkinda in awe about this whole thing. Doesn't seem real to me sometimes tho I know it is.
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I'm being treated thru SUTTER Cancer Center in Sacramento. All brand new and state of the Art buildings, equipment, library,ect. I am definitely fortunate for their being here.
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Curable? It sure doesn't seem like one is cured if one still has to take meds even after 5 years of NED, have scans, bloodwork, and check-ups. I'm now on a relatively low dose of Tamoxifen (10mg), which is a big change from full dose Femara. I feel almost half-cured. LOL.
Herceptin though is a game changer and perhaps that is the reason for the 75% cure rate, krazywolf.
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I know words are just words, though they can heavily influence our view of life, but if I have to be on tx forever, I don't think of myself as cured. However, if I am alive and thriving, I'll happily take it and who cares how it's labeled!
Krazywolf,
Yes, it does seem surreal to me too. Every now and then I'll tell someone I have stage IV bc and they look shocked because I look fine. That's exactly how I feel when I look in the mirror! Noticed you live in Sacramento. We are trying to have a northern CA get together. I'll bump the thread and hope you'll add your name.
Caryn0 -
I agree with you Caryn...about words and the influence they have...well said.
:-) I enjoyed your story...
Naniam- so sorry for your pain. Thinking of you all.0 -
Once we are diagnosed we all have words floating around us and I find lots of them confusing. Honestly, most days I sure don't feel I have a chronic disease. Especially the last two days and the pain that I have been dealing with.
Krazywolf, I like to learn the names of centers others are being treated. Sometimes they are the big medical centers but this one is new to me. Glad that you have it to go to. I go to a large medical center and I have never been given that kind of hope. We have to trust our doctors. I have only seen my oncologist 3 times, Friday 4. I don't have that kind of trust with my oncologist at this point. Lost my oncologist of 7 years.
Hope everyone has a good night
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Caryn,
Right on, thanks, you can bet I will add. And, LOL,I know exactly what you mean....if I had a buck for every look I got from people who looked at me like I'm dying tomorrow, or all ready dead for that matter, lol, and in my mind I'm laughing at most of them cuz they look more like someone society perceives as one who is stricken and'dying of cancer' than I do, lol...then there are the small few who thinks its all BS because I can still do this and do that...its crazy how life works out but I will always love it.0 -
Naniam,
Very sorry you are in that position with your onc,I too, briefly,had an onc I was not happy with. Didn't connect or he just lacked genuine compassion or both... Luckily he and his team relocated to a new built cancer center on outskirts of town and I opted to stay where I was used to going and chance another onc. I am very glad in my choosing. The Treatment Center really does play a Major role in recoveries and 'numbers',. Im keeping you in my thoughts and heart and pray for you and all of us to each and every day find peace within ourselves regardless the strife. Salute /p>0 -
I agree about the words and lables for our disease--who cares? If I'm alive and feeling good they can call it what they want!
I just want to clarify my experience with the gabapentin/tramadol med. I used the med for a total of 18 days and was given a package that increased the dosage every few days. I started at 600 mg and by day 14 was up to 1,200 mg (heading for 1,800 mg). It was at the 1,200mg that I felt too dizzy to drive a car and too nauseous to get off the couch. I spent a week in that state and didn't even get any pain relief. Everyone seems to have their own unique response to meds. I wish it had worked for me, but no luck there. I think I'll be on my 4th try for a helpful drug when they decide what to give me next! Ah, well ***sigh**
Nan--I hope the spine specialist can find something effective for your pain. Thoughts, prayers & hugs to you, hon.
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Glad to have found this thread and read all this useful info, thanks! I am just at the start of my stage 4 dx, starting Zometa next week, plus going for rads simulation (bad leg, hip, and back pain), and getting hip biopsy back on Wednesday to see whether I need an AI or chemo (probably Xeloda). It feels good to almost have a plan together, and if I can get rid of the pain and walk properly that will be good too.
I am a single parent of a nearly 5 year old who is having a hard time with this. Last week she said to me that she thought I will be sick until I die. So I told her that I think she is right but that I plan to be alive for a long time. So she said I better wish for that when I blow out the candles on my birthday cake. My heart breaks sometimes...0 -
Hi Latte,
Sorry that you're joining us but I hope we can offer you hope and as much support as you need. It sounds like your tx plan is progressing well. Yes it is sad that your daughter has to deal with this but if you are, age appropriately, honest and getting support for her, she will be alright. Thinking of you and hoping that your pain goes away very soon. Have a happy Purim. Is your little girl dressing up? This is such a fun holiday and of course, there's always hamantaschen!
Caryn0 -
Welcome, Latte!
I had problems with my sacrum and pelvis. Lots of pain. And walking was really reduced. If I went shopping I could almost make it through the grocery store and then it was like I just had to stop - taking anymore steps (i.e. getting back to the car) was very difficult. I had two different rad sessions and each lasted for 10 days. I started feeling relief at the end of the sessions and now my stride is almost normal. Just trying to build up some strenght again with small walks. I hope you experience the same!0 -
Thanks for the welcome Caryn. Yes, she dressed up as a fairy and as Snow White this year, she was gorgeous! Haven't had a hamantaschen this year and am not a big fan. If I'm going to have sugar there Re other things I like better😄
Christy, glad to hear you are walking better. My onco ortho said I should be able to walk normally after rads. I'm not sure I remember how to walk normally - I've been hobbling round with a cane for a month now...0 -
Wish I didn't like them! I could eat my weight in prune hamantaschen. Happily they are not as easily available here(Northern CA) as they were when I was growing up in the Bronx. Of course my bubbe made them and great rugelach too! Good luck with rads. I had rads x15 to the met on my femur. It has been necrotic in my last two scans.
Caryn
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Naniam, great to hear you're having some relief! I too have had back spasms as recently as just before Christmas. My regular go-to pain meds didn't work at all for the severe back pain I was having, and in light of that, my onc sent me for an MRI because he was worried about progression, as was I. Luckily, no progression, just spasms. My hospital has water therapy in a pool for people with arthritis. I asked my onc. if he could prescribe some of this physical therapy for me and he did. What a relief! Within 3 weeks, I was off all pain meds. And, at the time I began therapy, it just so happened the hospital and therapy program were looking into something called the Star Program which uses physical therapy in the water for cancer patients. I started the program with horrible back spasms and a frozen shoulder. I ended my therapy minus both. Because of my progress, I like to think, they are going to start offering the Star Program to my area's cancer patients.
Bottom line though, you really don't need a program if you don't have access to one. Getting into a pool and doing stretching exercises and some "marching" movements will pretty much do the same. I cannot recommend this highly enough to all my bone mets sisters. Anyting we can do to lessen the meds we take is well worth it. I'm not too cute in a bathing suit anymore, but cancer made me lose any vanity I had left long ago, and living without great pain is worth it.
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Latte, Sorry you have to join club mets. But the good part about this is all the women on this site will always be here for u. They have so much knowledge and just kindness and they know what you are going through. It is always harder to deal with an ilness with small kids because u really don't know what to say or do. I myself have 2 boys one is 7 and the other is 16. My older is in denial and my little just does not get it. Honestly I don't want him to worry about me and the less he knows the better. I want him to be a kid not that little boy with a sick mom. Once the treatment is in place it will get better. Stay strong . Stella
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When I was first dx'd my nephew was 6 and he hadn't really heard of cancer or that it was so dreaded. We just told him I had cancer and the medicine I had to take to get better would make my hair fall out but it will grow back. Granted I'm not his mom but I live a few blocks away so spend a lot of time with him. He accepted this explanation and it was no big deal. He treated me the same as always and made fun of my head. Now he is 14 and when I was dx'd with mets he sent me a text that sais "what's up?". He never sends texts unless he wants something so I knew what it was about. I said the cancer was back but I have to take meds every day and I will be ok. He still treats me normal and so far its easy because I don't have any symptoms. I don't want the subject of death to come up until it seems like its going to happen soon. That is a way of protecting myself as much as anyone else. In the beginning I had a hard time not crying when I was with him, and one time I couldn't stop myself. He asked what was wrong and I said "f***ing cancer!". I honestly don't think he even made a big deal of that at the time. We all just treat it like a chronic dz. The only difference is it MIGHT kill me before a dz like diabetes would, but who knows. When he was 6 he had a bday party and one of his friends asked my why I didn't have any hair. He said she has cancer, matter of fact like. Once we were at a family party and a lot of the people there didn't know us very well because they were friends of my uncle and in a different town, so they didn't know about the cancer or they didn't know me well enough to talk about it. Well he was wresting and generally acting up like usual, and all of a sudden he said "don't make me take that wig off! Hey everyone! Heidi's wearing a wig! She's actually BALD!" Hahaha the whole group got completely quiet, my mom scolded him and whispered "cj, NO", and I was laughing so hard I was crying! I miss that little kid!
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Hey ladies.... looking for a little advice. I have mets to spine T9 As well as sacrum S1and S2 As well as left pelvic lesion.
My question is that up to this point I have not had a lot of pain... but last night I woke up with pain in my knees on both sides. Has anyone eles experienced this? O called nurse and they seem to think maybe side effect of Chemo. I am also on Zometa and Lupron.
just nervous... afraid of progression and wanted to know if anyone had similar se‘s or knew of what else could be.
Thanks everyone for your time.
Jena0 -
I had pain in the knees with Femara and Zometa. It was so bad I thought I would need a cane. Now it hardly bothers me with Tamoxifen.
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I have had knee pain off and on for 7 years. I even went to physical therapy last year. I never felt like it helped, and the pain went away in time. I have basically learned with all the meds we take our joints and muscles feel it. I have bone mets in some of the same areas you have, and have never felt any pain except for intermittent aching muscles and bad knees, calves, etc. I was on anti-hormone though during these seven years. I am now on Afintor, a targeted chemo, and my knees are fine so far. I also recall that breast cancer usually does not travel below the hips?
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Below the hips? No, I don't think so since many of us have mets to the femur. I don't recall anyone having mets below the knee, however.
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I had bad pain in my L knee. I've been on Femara & Zometa for 3.5 years. Had MRI of knee and they found arthritis. Has some PT and a injection in the knee. Doing much better and have to keep up with leg press and walking.
Terri
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Latte - so glad you found us, but sorry you have to be here. Some of us have been dealing with bone mets a long time and others are new to all of this. Know that everyone is here to help, encougage, and provide support for each other. Keep communication open with your daughter and be as honest with her as you can and she will adjust fine and be able to deal with things as they happen. You evidently have been already doing a great job with her by answering her questions and answering fears as they arise. Just give her lots of hugs and kisses.
Gentle hugs,
AJ
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Thanks for your replies. I am going to assume chemo and or zometa...trying not to be negative. Just don't understand why se‘s waited till 3rd week. My treatments are ever 3 weeks.. Last time week 2 usually was the worst.
Just wanted to say thankyou. You all have so much knowledge... usually more than the docs/nurses when it comes to SEs and dealing with them.0 -
Latte, like everyone sorry that you had to find us but welcome. I am visiting with my two young granddaughters at the moment; they area ages 7 (almost 8) and 5. They both know I have cancer; that it has changed how I can play with them; that I lost my hair, etc. We have been truthful to what we feel they need to know and what they can understand - they both are bright so they have ask questions.
FaerieQueen, no we don't have a program like that. Can't think of a pool off the top of my head that I would have access too. Have been up more since visiting the grands and boy is my leg swollen all the way to the ankle. Going home tomorrow, start Xeloda - 4300 mgs. daily. Think the Xeloda might be a bigger problem than the swelling - we'll see. I'm still try to move some of the fluid. Thanks again.
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Thanks everyone for your kind words. Today I had my rads simulation and got three new tattoos to match the three I had from the last round. I start rads on Tuesday next week, and start Zometa this Thursday. Can't wait for the rads to help with the pain. Also get biopsy results tomorrow and will then know whether I get an AI or chemo... Feeling much better mentally now that my plan is underway.
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