Mets to spine and rib

Lynne Logan
Lynne Logan Member Posts: 105 Member
I saw my oncologist Tuesday to go over the results of the PET scan. My day actually started with a very urgent sounding lady from the lab insisting I get a hold of my provider immediately. Evidently she didn't realize this was blood work ordered by my oncologist as it seems my tumor markers were way elevated. (7. something)
I had been concerned about a muscle spasm in my right back and hoped it wouldn't light up like Times Square on the scan. I'd had this problem since early April and I thought it was from my new keyboard.
After getting the results yesterday I now know what I'm facing and it's not good. Evidently I have 2 spots on my spine (T2 and T9) as well as mets to the 12th rib. So the pain wasn't a muscle spasm at all but bone mets.
I was to have my port installed yesterday morning but the imaging machine at the hospital went on the fritz and I've still heard nothing about rescheduling.
I will be starting 6 rounds of CMF (Cytoxan, Methotrexate and Fluorouracil) probably next week. Not sure what the prognosis is for the bone mets but I've heard not so good.
Anyone else dealt with this?
Lynne
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Comments

  • DebbyM
    DebbyM Member Posts: 3,289 Member
    I am so sorry Lynne and will
    I am so sorry Lynne and will be praying for you.

    Hugs, Debby
  • missrenee
    missrenee Member Posts: 2,136 Member
    DebbyM said:

    I am so sorry Lynne and will
    I am so sorry Lynne and will be praying for you.

    Hugs, Debby

    Hi Lynne--I know what you're going through
    I was diagnosed initially in Dec. '09 with Stage 3C invasive ductal ca. Had lumpectomy, re-excision for margins, 6 rounds of TAC chemo and 33 rads. I was on Arimidex for about 18 months. Last Dec/Nov. I was experiencing back pain. Had PET, bone scan, MRI, CT and was re-diagnosed with bone mets-T-12 fully involved and then sprinkled throughout my spine/pelvis. Needless to say, I was devastated. I started monthly injections of Faslodex (stronger estrogen blockers) and infusions of Zometa (strengthens bones). I've had 5 monthly treatments and have my PET scan tomorrow to see if the treatment is working. Stable would be good, diminished areas of mets would be even better. This treatment is extremely tolerable and I pray it's working. If not, we start up on a chemo regimen :(.

    I'm quite jittery about the PET tomorrow, but it's in God's hands and I pray that He will take care of me. I pray that for you too, Lynne. Please keep us posted or PM me if you'd like.

    Hugs, Renee
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    Hi Lynne,
    As you probably

    Hi Lynne,

    As you probably know, I've been dealing with this stage IV/mets status for about 9 months now. (Although my mets are not causing any pain as yet.) It is a hard pill to swallow, and coming to acceptance is different than the initial dx.

    Sometimes I think the second time around is easier because I know much more now that I did before dx....sometimes I think it is harder for the same reasons.

    I wish I had more for you than hugs.

    Linda
  • camul
    camul Member Posts: 2,537
    Hi Lynne
    I was 8 1/2 years out (Aug/Sept 2010), had rib pain, went to urgent center, they took an x-ray, looking for pneumonia and blood work to ck for infection. They sent me to hosp for ct scan, who said it was a pulled muscle.

    Two weeks later, hips and tailbone were really painful, couldn't walk up a flight of stairs. Called the onco, he scheduled me for 9a the next morning. He did blood work and sent me for a pet scan which lit up like a Christmas Tree. I had mets to almost every bone in my body, and skin tumors sporadically on my body.

    I was shocked, but not surprised. Started tamoxifen, Zometa, Vitamin D,, and rads to hips, pelvic and tailbone. Did not start chemo til Jan 12 2011, as I was ckg out alternate treatments and trials, and went to Johns Hopkins and City of Hope for 2nd opinions. City of Hope gave the same treatment plan as my onco gave me.

    I just wanted to be sure I was on the right track. I am still here 21 months after diagnosis, and today finished 17 months of weekly chemo. I am taking a 2 week break now. Was going to be at least a month, but today, it was determined it would only be 2-3 weeks.

    In some ways like Renee or Linda said, it is easier than the first time around because we know what to expect, but in some ways it is harder because we know what to expect. .

    I just wish you the best possible outcome with the treatment plan. I hope they can shrink the tumors, then just be on a maintenance schedule after that.

    My best to you always, will keep you in my prayers and hope they get you that port soon!

    Hugs and prayers,
    Carol
  • New Flower
    New Flower Member Posts: 4,294

    Hi Lynne,
    As you probably

    Hi Lynne,

    As you probably know, I've been dealing with this stage IV/mets status for about 9 months now. (Although my mets are not causing any pain as yet.) It is a hard pill to swallow, and coming to acceptance is different than the initial dx.

    Sometimes I think the second time around is easier because I know much more now that I did before dx....sometimes I think it is harder for the same reasons.

    I wish I had more for you than hugs.

    Linda

    Waiting for my doc to go over PET scan results
    Hello Ladies,
    I am waiting with my husband at my oncologist office to go over my PET scan results.
    It seems like they found something in my bones.
    What questions should we ask
    I am not ready to join the club
    Lynn I am very sorry for your progrssion
  • SIROD
    SIROD Member Posts: 2,194 Member
    Sorry to Read Your News
    Hi Lynne,

    I am sorry for your new problem. Many people with bone mets can live for many years. Who knows by the time it becomes very serious, there might be a cure.

    Bone mets is very painful. Keep your chin up and in due time, it will become a way of life. I am going into my 18th year and 12 with mets.

    Hoping you will have that port installed soon so you can start on your chemo treatments.

    Best,

    Doris
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    camul said:

    Hi Lynne
    I was 8 1/2 years out (Aug/Sept 2010), had rib pain, went to urgent center, they took an x-ray, looking for pneumonia and blood work to ck for infection. They sent me to hosp for ct scan, who said it was a pulled muscle.

    Two weeks later, hips and tailbone were really painful, couldn't walk up a flight of stairs. Called the onco, he scheduled me for 9a the next morning. He did blood work and sent me for a pet scan which lit up like a Christmas Tree. I had mets to almost every bone in my body, and skin tumors sporadically on my body.

    I was shocked, but not surprised. Started tamoxifen, Zometa, Vitamin D,, and rads to hips, pelvic and tailbone. Did not start chemo til Jan 12 2011, as I was ckg out alternate treatments and trials, and went to Johns Hopkins and City of Hope for 2nd opinions. City of Hope gave the same treatment plan as my onco gave me.

    I just wanted to be sure I was on the right track. I am still here 21 months after diagnosis, and today finished 17 months of weekly chemo. I am taking a 2 week break now. Was going to be at least a month, but today, it was determined it would only be 2-3 weeks.

    In some ways like Renee or Linda said, it is easier than the first time around because we know what to expect, but in some ways it is harder because we know what to expect. .

    I just wish you the best possible outcome with the treatment plan. I hope they can shrink the tumors, then just be on a maintenance schedule after that.

    My best to you always, will keep you in my prayers and hope they get you that port soon!

    Hugs and prayers,
    Carol

    Oh No!
    Dear Lynne-

    You've had so much to go through these past months. Will continue to send prayers and hope your way.

    Suzanne
  • Monicalynn
    Monicalynn Member Posts: 61
    Sending my thoughts and
    Sending my thoughts and prayers to you Lynne
  • SIROD
    SIROD Member Posts: 2,194 Member

    Waiting for my doc to go over PET scan results
    Hello Ladies,
    I am waiting with my husband at my oncologist office to go over my PET scan results.
    It seems like they found something in my bones.
    What questions should we ask
    I am not ready to join the club
    Lynn I am very sorry for your progrssion

    New Flower

    Dear New Flower,

    I was sad to read your post. I am hoping it is some other irregularity. No one wants to join the stage IV Club. It isn't really much fun.

    Keep us posted.

    Best to you,

    Doris
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    camul said:

    Hi Lynne
    I was 8 1/2 years out (Aug/Sept 2010), had rib pain, went to urgent center, they took an x-ray, looking for pneumonia and blood work to ck for infection. They sent me to hosp for ct scan, who said it was a pulled muscle.

    Two weeks later, hips and tailbone were really painful, couldn't walk up a flight of stairs. Called the onco, he scheduled me for 9a the next morning. He did blood work and sent me for a pet scan which lit up like a Christmas Tree. I had mets to almost every bone in my body, and skin tumors sporadically on my body.

    I was shocked, but not surprised. Started tamoxifen, Zometa, Vitamin D,, and rads to hips, pelvic and tailbone. Did not start chemo til Jan 12 2011, as I was ckg out alternate treatments and trials, and went to Johns Hopkins and City of Hope for 2nd opinions. City of Hope gave the same treatment plan as my onco gave me.

    I just wanted to be sure I was on the right track. I am still here 21 months after diagnosis, and today finished 17 months of weekly chemo. I am taking a 2 week break now. Was going to be at least a month, but today, it was determined it would only be 2-3 weeks.

    In some ways like Renee or Linda said, it is easier than the first time around because we know what to expect, but in some ways it is harder because we know what to expect. .

    I just wish you the best possible outcome with the treatment plan. I hope they can shrink the tumors, then just be on a maintenance schedule after that.

    My best to you always, will keep you in my prayers and hope they get you that port soon!

    Hugs and prayers,
    Carol

    Count on all of you
    I knew I could count on all of you to help me understand and come to grips with this DX. My oncologist didn't discuss anything beyond the 6 sessions of chemo followed by another PET scan. My first time around there was something suspicious on T9 but after 5 infusions of Cytoxen and Taxotere It didn't show on my Dec. scan. Naive me thought chemo could clear up whatever was in me.
    I thought I caught this tumor so early that everything would be fine. However, even though I was taking Arimidex the tumor doubled in size within a month.
    I will be having my port put in on Monday and start chemo shortly thereafter.
    I don't know how to tell my daughter and grandkids, who were so proud of me for going through treatment. I had a little great granddaughter born about half way through my chemo and that gave me the will to get better no matter what. Now I'm faced with this and realize that this is a whole new ball game.
    I have said about the same thing. I know what I know and don't know what I don't know. I do know that this time around it's life threatening way beyond what I could have ever imagined the first time.
    Keep sending me more stories as I feel I need all the information I can get. While my oncologist and I have a long history (he treated my 16 year old daughter for malignant melanoma back in 1986) he's not one to offer up more than he feels I need to know at the time.
    Hugs to all of you,
    Lynne
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    missrenee said:

    Hi Lynne--I know what you're going through
    I was diagnosed initially in Dec. '09 with Stage 3C invasive ductal ca. Had lumpectomy, re-excision for margins, 6 rounds of TAC chemo and 33 rads. I was on Arimidex for about 18 months. Last Dec/Nov. I was experiencing back pain. Had PET, bone scan, MRI, CT and was re-diagnosed with bone mets-T-12 fully involved and then sprinkled throughout my spine/pelvis. Needless to say, I was devastated. I started monthly injections of Faslodex (stronger estrogen blockers) and infusions of Zometa (strengthens bones). I've had 5 monthly treatments and have my PET scan tomorrow to see if the treatment is working. Stable would be good, diminished areas of mets would be even better. This treatment is extremely tolerable and I pray it's working. If not, we start up on a chemo regimen :(.

    I'm quite jittery about the PET tomorrow, but it's in God's hands and I pray that He will take care of me. I pray that for you too, Lynne. Please keep us posted or PM me if you'd like.

    Hugs, Renee

    Scan
    Hi Renee,
    I can imagine you're nervous about the PET scan but let's pray it shows some improvement. Please let us know the results. We can only succeed with faith and positive thoughts. So I work on that all the time.
    I was angry that I had to be strong and protect my family while undergoing treatment the first time. I told them that this time around would be different and they all agreed that I shouldn't shoulder that burden and they'd take care of me. However, here I am again, hiding the seriousness of this DX.
    Cancer is so difficult on so many levels, isn't it?
  • Lynne Logan
    Lynne Logan Member Posts: 105 Member
    SIROD said:

    Sorry to Read Your News
    Hi Lynne,

    I am sorry for your new problem. Many people with bone mets can live for many years. Who knows by the time it becomes very serious, there might be a cure.

    Bone mets is very painful. Keep your chin up and in due time, it will become a way of life. I am going into my 18th year and 12 with mets.

    Hoping you will have that port installed soon so you can start on your chemo treatments.

    Best,

    Doris

    12 years!
    Hi Doris,
    You got that right, I've been hurting since early April and thought it was a muscle problem. I later read that this is a common thing and many women experience this. Even my NP felt my back and gave me Flexeril.
    You've given me hope however. I was figuring I'd be lucky to have another year or two. I have my little 9 month old great granddaughter to see grow.
    Thank you so much.
    XXXX
    Lynne
  • New Flower
    New Flower Member Posts: 4,294
    SIROD said:

    New Flower

    Dear New Flower,

    I was sad to read your post. I am hoping it is some other irregularity. No one wants to join the stage IV Club. It isn't really much fun.

    Keep us posted.

    Best to you,

    Doris

    To Doris and my other friends
    I am very sad too. My diagnosis has changed today. We have a plan and I am going to SF on Saturday
    I will pm you next week
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    UGH!!!
    I hate these news!!! I don't come here as often, although I check and now I am part of the facebook group, but I HATE to come here and find out one of us is dealing with this beast, AGAIN.

    Lynne, I know this is very hard for you. I know you probably feel discouraged. But you never loose faith, ever. And know prayers will lift you up really high so that you can face this new challenge with courage and a positive attitude.

    Sending you a big hug. Hoping for a smooth recovery (because I am praying for your FULL recovery), and little to no side effects with your chemo regimen.

    <3
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    Oh No!
    Dear Lynne-

    You've had so much to go through these past months. Will continue to send prayers and hope your way.

    Suzanne

    Lynne, I hate reading this
    Lynne, I hate reading this news. You've been through enough! I am praying and sending you big hugs!


    Sue :(
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member

    To Doris and my other friends
    I am very sad too. My diagnosis has changed today. We have a plan and I am going to SF on Saturday
    I will pm you next week

    Sending lots of prayers,
    Sending lots of prayers, hugs and positive thoughts.


    Hugs, Jan
  • VickiSam
    VickiSam Member Posts: 9,079 Member

    UGH!!!
    I hate these news!!! I don't come here as often, although I check and now I am part of the facebook group, but I HATE to come here and find out one of us is dealing with this beast, AGAIN.

    Lynne, I know this is very hard for you. I know you probably feel discouraged. But you never loose faith, ever. And know prayers will lift you up really high so that you can face this new challenge with courage and a positive attitude.

    Sending you a big hug. Hoping for a smooth recovery (because I am praying for your FULL recovery), and little to no side effects with your chemo regimen.

    <3</p>

    Lynne .. So sorry to read this latest update!
    Gentle hugs, and prayers for you. Stay strong and allow us to help you thru this
    step of the journey.

    Strength, Courage and Hope for a Cure.

    Vicki Sam
  • mom62
    mom62 Member Posts: 604 Member
    Bone Mets
    Hi lynne,

    Sorry to hear about your results. Sometimes it never seems to end does it! I have mets and am still around 3 years later. I'm on hormone therapy. They did take out most of my sternum and sawed off half of five of my ribs on the right side. I have no chest wall, quite pretty! But I am here and living. I'll say prayers for you as well.

    Terry
  • SIROD
    SIROD Member Posts: 2,194 Member

    12 years!
    Hi Doris,
    You got that right, I've been hurting since early April and thought it was a muscle problem. I later read that this is a common thing and many women experience this. Even my NP felt my back and gave me Flexeril.
    You've given me hope however. I was figuring I'd be lucky to have another year or two. I have my little 9 month old great granddaughter to see grow.
    Thank you so much.
    XXXX
    Lynne

    Hopefully soon, you will meet Mr. NED or Mr. Stable Boy
    You have had a bad turn of events and of course you are weary of it all. Once you meet Mr. Stable Boy or better yet, Mr. NED you will feel the confidence returning.

    Best to you,Lynne,

    Doris
  • Alexis F
    Alexis F Member Posts: 3,598

    Sending my thoughts and
    Sending my thoughts and prayers to you Lynne

    I just hate reading this!
    I just hate reading this! My thoughts and prayers are with you Lynne.


    Big hugs, Lex