Bone Mets Thread

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  • diana50
    diana50 Member Posts: 253
    edited July 2013

    Kiwi

    My Onc gives me a big bag of fluids 24 hours after zometa infusion. Also slowed the zometa down to hour and half. The extra bag of fluids totally made a difference for me.

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2013

    Thanks, Nicky, Exbrnxgrl, and Diana.  I get a 90 minute infusion; they slowed it to 2 hours this time.  And they give me a little bag of saline afterwards.  But I typically feel yuck for about 3 hours the day after (queasy, tired, achy, flu-like symptoms).  After an hour's nap, I usually feel better, but not this time.

    All that said, I now feel a bit silly as I think I actually do have the flu.  I woke up with a sore throat, aches all over, sneezing, etc.  Hard to tell as the symptoms are identical, but they were worse this time and have lasted longer.  Last month, I ended up with a horrific stomach bug afterwards; almost like food poisoning.  And this month, I have the sore throat kind.   

    I'll definitely make sure I hydrate before the next one.  And do things to boost my immune system!  It's winter and flu season here and we've had lots of people off sick at work.

    Thanks again for your replies!

    Terre

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    KiwiCatMom, just curious--where are you from? You said it's winter there, so I'm guessing Australia or New Zealand?

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,294
    edited July 2013

    Kiwi...I'm betting New Zealand !

  • NickyJ
    NickyJ Member Posts: 372
    edited July 2013

    Exbrnxgrl,

    I'm with you! Definitely a New Zealander! I'm actually jealous of the cold weather. Having an awful time with hot flashes and the summer. When I leave the house at the moment, I have to carry a small towel to try and dry myself off......a bit of winter cold would go down very nicely - without catching the flu of course. Poor you, KiwiCatMom. Hope you feel better soon!

    Nicky

  • Redroan
    Redroan Member Posts: 111
    edited July 2013

    I am curious on how others bone pain feels. I have had a week of radiation but still have pain in groin radiating to knee when I stand and walk, I am wondering if this is normal if there is a normal ? Am also on fentynal patch and vicodin as needed but continue to have pain. Just wondered if anyone else has had this or am I just a whinner, I usually can handle a lot of pain I think . Thanks for your help, 

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2013

    I'm in New Zealand!  I'm American but moved here five years ago with my Kiwi (New Zealander) husband. 

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2013

    Thanks for the kind wishes.  I'm feeling much better today; there's a fairly mild flu bug that's been going around the office and I think that's what I have.  Still fighting it off a bit but much better.  As to winter; I generally hate winter after living in Las Vegas, San Fran, and Houston most of my adult life.  It's a bit chilly here for my taste but I have horrific hot flashes between the Zolodex and Letraccord and I think having them in winter is a bonus.  Sure saves on heating costs. :)

    I can't tell you how much these discusisons help me.  I live in a small town about an hour north of Wellington and work in Wellington, which makes for a long day and not a lot of time to socialise and make contacts.  The Cancer Society people here are amazing and there are some wonderful free services (such as Counselling and Sweet Louise) but it sure helps to interact others who are going through the same thing so I can ask questions.  I feel a bit isolated at times and this helps a lot.

    You may wonder about the Sweet Louise reference.  I don't know if they have it in the US but they should!  It is for people with Stage 4 breast cancer.  You get $500 per year in vouchers/play money that you can put toward any listed service you want to use.  Services range from driving you to doctor's appointments to house cleaning to yard work to Reiki healing and massage.  They also have a Look Good Feel Better program that assists with makeup, wigs, wardrobe, etc.  The businesses offer the Sweet Louise organisation discounted services (or they donate them).  Sweet Louise also has lunch meetings, counselling services, and other support tools.  Really a fantastic organisation.  I haven't spent my vouchers yet, but being an avid gardener and having my garden about 2/3 ripped up to redo when I was tossed into the hospital to get a pin put in my femur in February (peak of summer), it's quite a mess.  So I'm thinking some help there along with a massage are good candidates.

    I also met a five year survivor at the airport last Wednesday.  It was quite random; our flight was delayed and we started chatting.  She wasn't award of this site, and I encouraged her to sign up.  Her cancer has spread to her lungs, lymph and blood, but she looks fantastic and has declared herself a survivor and fighter.  Inspirational lady - as are all of you.

    Thank you all from the bottom of my heart! 

  • KiwiCatMom
    KiwiCatMom Member Posts: 2,337
    edited July 2013

    Redroan, I hurt for about two weeks after radiation and they told me it was normal for the pain to actually increase in the short term but lessen with time.  And mine's definitely less than it was before radiation.  Just took some time.  I had 37 rad treatments when I had my initial diagnosis and the tiredness went away within about 3 days after stopping radiation.  With this round, I stayed tired for about 3 weeks, which I'm also told is normal.

  • Redroan
    Redroan Member Posts: 111
    edited July 2013

    Thanks for answering kiwicatmom, Can you tell me what your pain is like, Mine is worse on standing and sitting initially. Sharp pain down to my knee, then it just is an ache all the time. Is your pain similar at all. As for tiredness, I am beginning to love my afternoon naps. lol. Don't really know if its the rads or the afinitor , can't work because of pain meds and pain so naps are my escape! Thanks

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    KiwiCatMom, good to hear from you! Sweet Louise sounds like a great program. I'm not aware of any such thing here, unfortunately. We do have Look Good Feel Better, but I don't think it's an ongoing thing--you just go to one meeting. Does anybody know more about these or other programs?

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    Redroan, before my hip replacement surgery I had pretty bad pain all up and down my leg, but it only hurt when I walked. The large lesion on my ilium hurt when there was pressure on it, usually from lying on my back. Radiation eventually took that pain away. Now I just have mild pain in my hip when I walk. I was always able to get by with just ibuprofen . I know a lot of women have much worse pain.

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    Oh, and Redroan, my pain is also worse on initially standing and walking. I was really, really tired during radiation, but I don't know if it was due to the radiation, surgery, lack of sleep due to having to be on my back, or depression from the mets diagnosis.

  • MarieK
    MarieK Member Posts: 467
    edited July 2013

    Before my mets DX I never really had any pain - just a bit of a dull ache in my leg to the knee when over exerting myself but I can remember that feeling for many many years even before my BC diagnosis.

    Now since finishing rads (for mets to top of femur at hip) I have had some random pain flare ups.

    Yesterday I was helping my daughter get ready for an apt move and I went about it my usual way bending and lifting with no problem (I'm normally very energetic).  Last night as I was relaxing I felt sharp pains at my hip.  I've never felt that before.  

    I took some Advil PM to help me sleep and today I'm much better.  Still a bit of body soreness that you would normally get from moving and lifting stuff but no real pain.

    I know I should take it easy but it's not in my nature to do so!

    As for constant pain versus intermittent pain - My MO also told me that cancer is painless (I guess when it's at the cell stage) but if it's a constant pain that's another story.  He said that if the pain went away or was relieved by ibuprofen it wasn't cancer. WTF!!!

    Maybe what the drs describe as constant pain for cancer is for patients that have cancer that is causing problems with other areas - you know like a large tumour or lesion that is pressing on something else causing pain? Afterall most doctors would not experience this themselves but rely on information that they get from studies and patient reports.

    I know with my original BC tumour I had a lump at the top of my chest which I could SEE and feel quite easily.  It hurt all the time and so they thought it might be a cyst because cancer does not hurt! HA! 

    With the advance of medicine and medical imaging they are finding cancer earlier and quite possibly before the pain becomes constant or it interferes too much with the normal bones and tissue?

    So I believe that if you are experiencing any kind of unexplained pain it's worth checking out.  Especially for those of us that have BC histories!

    As I said before my mets diagnosis my leg pain only flared up from activity.  If I sat around and didn't do much it didn't hurt me.  

    However I did end up having a 3cm lesion on my femur which quite possibly had been there all along!  AND it might have been found sooner if I had some scans done years ago!

    Marie

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    Marie, the ball of my hip joint was so full of cancer that there was hardly any bone left. The orthopedist had me get a walker that very day and said the hip was ready to fracture. When they did surgery, they found cancer and a small fracture in the femur below the hip. Later they found a very large lesion on my ilium. All this with pain that was intermittent and didn't wake me up at night! Should we all tell our doctors so that they stop dismissing intermittent, less than severe pain as not being cancer. Btw, ibuprofen has always eased my pain!

  • Redroan
    Redroan Member Posts: 111
    edited July 2013

    Thank you ladies! My pain is not constant but definitely sharp in groin,hip area, and femor on sitting or standing. If i stay up and walk I can tolerate it and walk with a limp. From what I have read it sounds a lot like similar pain as you folks have had. Makes me feel a little more at ease,Who ever said cancer is not painful has apparently not had cancer. Hello, ask someone with cancer. Anyways, you all have been very helpful for my sanity anyways. Now after 2 xrays, and 1 week of rads, with 9 more treatments to go , I need to decide if I should have ct of femur and pelvis, for possible fracture since I still am having pain, with not much change as of yet. Thanks again , best of luck to all of you. Hope we are all pain free. 

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    My MO told me that it takes awhile for radiation to ease the pain sometimes, because the bone has to heal. He said it's like healing from a fracture. That's how it was for me.

  • M360
    M360 Member Posts: 164
    edited July 2013

    I'm like most of you ladies here with intermittent pain in femur and hip.  I had groin pain for a long time before when driving and was told for over a year it was arthritis.  When they did my PET Scan last November they found cancer in femur and medullary canal, spinal cord, lungs, and liver.  I don't have  pain in lungs or liver, would never have thought cancer was there but my spinal cord from T1 through T11 had pain when sleeping was always a back sleeper but no longer.  I wish I could have radiation for such.  

    I asked before but has any of you had gamma knife surgery and how does it differ in regards to radiation and tissue healing?  MO is talking about gamma knife surgery on spine and would like to hear what you ladies experienced with such?

  • raro
    raro Member Posts: 78
    edited July 2013

    Do they even do gamma knife in the spine?! My onc years ago said it was only for brain lesions. Then again, he was an idiot.

    It seems like the spine is the most common area of bone mets. Anyone out there have skull mets? I had surgery for a large area that was pressing on the brain, and apparently have one or two other spots. I've been stable on afinitor/aromasin, but I'm pretty sure the cancer is on the move again. I'm getting horrific headaches, and certain areas of my head are actually tender. I don;t have scans for a few more weeks, but I think I'll call my onc and see if they can move them up. I take oxy for pain, but it simply isn't enough, and I hate to raise it again. I'm always so tired as it is. 

  • MaryLW
    MaryLW Member Posts: 1,585
    edited July 2013

    Raro, sorry about the headaches. Is there a different drug you could try?

  • SyrMom
    SyrMom Member Posts: 575
    edited July 2013

    Raro, yes, they do gamma knife on spine and skull mets; have known pt that have had it done very successfully.

    I recently had radiation to the spine.  It was explained you can only radiate spine once; but, if needed, gamma knife is a possible option for furture. 

  • MarieK
    MarieK Member Posts: 467
    edited July 2013

    Thank you ladies for sharing.  There is so much support and information on here!  

    I'm sorry to hear that some of you are in pain.  Big gentle hugs to you and I hope you find some relief soon!

    Today is a good day for me pain wise - I've been resting since all the work I did on Saturday (preparing for a move) and it seems to have helped me.

    This morning after my shower as I was looking in the mirror I thought about my in-progress reconstruction.

    How many of you are undergoing reconstruction?

    I delayed my recon, wore a heavy prosthetic breast for a while, but reconsidered and started recon in 2010 (1 year after my mastectomy).

    I'm almost done - maybe just one more fat grafting and a nipple short?

    It occurred to me that now that I have bone mets (or met) should I bother continuing? Will I be allowed to continue?

    I was kind of looking forward to the next stage - a tummy tuck and nipple - to "finish" things off but now I'm not sure I want to voluntarily invite any more pain into my life.

    Any thoughts?

  • tarheelmichelle
    tarheelmichelle Member Posts: 248
    edited July 2013

    MarieK, my recent PET scan showed progression, but my onc gave me the OK to have fat grafting surgery in Sept. I had a lumpectomy tho not a mastectomy. My surgery was WAY back in 2008, and a lot of tissue was removed. I was very close to needing a MX. I already had saline implants before I was diagnosed, so I'm not flat on one side. I am about a cup size smaller on the left. Like you, I wasn't sure if I should do anything surgical right now. Because of my mets, I'm in constant pain/unable to work etc. For me, what it comes down to, is, if a surgeon has the ability to make my breasts symmetrical, like they used to be, it's worth a try. I'm not being fair to myself if I only allow medical treatments for my cancer, and not for what cancer has done to me. I'm a little nervous, but I'm having the surgery in Savannah, and am treating it like a mini-vacation. (New Orleans center wasn't covered by insurance and I didn't have the energy to fight for an exception). From
    what you have said, you are almost done. Why stop now? They haven't stopped making pain pills. ;-)

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,294
    edited July 2013

    Marie,

    I had a bmx and one step implants when it was thought that I was stage II. I had barely healed from the surgery and had yet to start chemo when my bone met was found. I am glad I had recon, and it looks great, because at least in dealing with the shock of stage IV, I wasn't struggling with body image. I know myself well and know I wouldn't have been happy without recon and would have had it done even if I'd found out about stage IV first. That being said, it's up to you. If you feel more comfortable with a few more tweaks, you should do it!

    Caryn

  • NYCchutzpah
    NYCchutzpah Member Posts: 148
    edited July 2013

    I recently finished up the reconstruction.the last step was the fat grafting (had the nipples done a few months ago) The bone mets were bothering the heck outta me so I figured that since I was in pain anyway that I would get the fat grafting done and stay doped up for awhile. Worse part of the fat grafting is the compression girdle got away with only three weeks in the girdle. I am not going to pose for playboy but I am satisfied with the results. I look pretty darn good in clothes. The bone mets are still a pain. The onc has suggested radiation but I hope that the new combo of drugs (once a month Falsodex and Xgeva) will help take the pain away. Meanwhile I have my Fenetal patch and some oxy pills. I think I have found a way for me to manage with taking the drugs. I am very cautious when I do use the car, otherwise the bus is pretty convinient

    Charlotte

  • lindatwo
    lindatwo Member Posts: 55
    edited July 2013

    MaryLW, I'm not sure which chemo drugs I will be receiving, the doctor said it would be once a week and would not be as strong as the first time around. I think I will be glad to have the port, I will also be receiving Zometa. (Yay! now reading about THOSE SE's!) That's why it's nice to have each other to help, think I'll ask about slowing the infusion down.  Thanks NickyJ!

  • lindatwo
    lindatwo Member Posts: 55
    edited July 2013

    raro, I have mets to both lungs, several ribs, spine from my neck to tail bone, and skull. While my back and ribs hurt all of the time if I don't take something for pain, I have no symptoms from the lung or skull mets.

    Speaking of pain, my pain was intermittent and because I had started a new exercise program, I thought it was just sore muscles.  It also seemed to move around. It is crazy to to me now, thinking I just ignored it for at least 4 months!

    Ronda, I am not at all offended at your questions, I am so thankful for this site and the advise that we can give each other.  I welcome any suggestions. My onc was really wonderful, he spent over an hour with my DH and I.  He basically gave me the option of hormone treatment, chemo, palliative treatment, or clinical trials.  He also told me that he would not be at all offended if I decided to go to a university or for a 2nd opinion. He said it was all about finding the best treatment for me. It was only when I asked what he would suggest that he said chemo.  The reason he gave me was because hormone treatment can take up to 3 months to work and chemo would give me relief faster. (I went on Arimidex after chemo in 2009, then switched to Femara and have been on it ever since.) He hugged me when I left.  I have considered going to Stanford for a 2nd opinion, and will ask him about that at my appt tomorrow.

  • M360
    M360 Member Posts: 164
    edited July 2013

    Marie,

    You have come so far with the reconstruction you should go all the way.  I can't have reconstruction because of tissue issues and still can't wear a bra after mastectomy.  The first year it didn't bother me but I would love to not feel so uncomfortable when I swim and the scars around to my back and shoulder and no breast or chest muscles shows that.  People always ask if I have or had breast cancer.  

    You deserve to feel and look the best that can be for yourself.  I agree with all that Tarheel said.  If the doctors say it's okay to go ahead do it for yourself and when it's all finished buy yourself that sexy little black dress and go out dancing!

    You've come a long way and I wish you the best always.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,294
    edited July 2013

    Lindatwo,

    I have gone to Stanford for second opinions several times. If you decide to go, I can recommend a great onc. She is wonderful and cooperates fully with your primary onc.

    Caryn

  • MarieK
    MarieK Member Posts: 467
    edited July 2013

    Thank you all for your comments and support.  

    My husband and family have been so supportive and I know that they will accept whatever decision I make.

    I see my MO and RO in early Sept and my PS again later in Sept.  I will ask them about continuing with reconstruction.