Bone Mets Thread

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. 

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....

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.

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.

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.

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.

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.

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!

Caryn

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...

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.  

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!

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.

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.

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

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.