Is this a progression?

JackieA
JackieA Member Posts: 150
in Breast Cancer #1
I posted a lot a few months back. Since then I have been very busy. You probably know my story. My husband has stage IV breast cancer. He has very widespread mets to the bones. His spine is fully engulf with mets, both femurs, hips, sternum, ribs, clavicle--recently a small tumor was found in liver. He has gotten progressively worst in the past few months. Severe neurothapy. We started having trips to hospital back in October. Since then, we have to have fluids every week. He is starting to get steroid shots every other week. Not successful. Ok today the dr told him he would hold off on chemo because the chemo is beating his body down. He is weaker. I really don't know where/what to post. I don't know what to think anymore. We have been on chemo for 3 years straight. Eleventh round of HAlaven. I am scared that it may spread now. Is it possible? He was just increased to 125 mcg of fentanyl, 8 mg of dilaudid every 4 hours, and 2700 mg of Gabepentin....Still in a lot of pain.

Is it possible for CBC to look normal and still have progression? Does anyone have a similar story?

Comments

  • SIROD
    SIROD Member Posts: 2,194 Member
    #2
    Blood
    Dear Jackie,

    I am so very sorry for you and your husband. I do know that blood work can look very normal at times when your body is anything but.... Sometimes the body does need a break from cancer treatments as it is doing more harm than good. How long a break did the oncologist suggest?

    Is there someone at the hospital that can help you and your husband through this crisis?

    Best,

    Doris
  • grams2jc
    grams2jc Member Posts: 756
    #3
    I'm sorry about all you are going thru
    Before my mastectomy in 2010 all of my blood work was in normal limits. Before the dx of my brain mets my CBC was normal as was my tumor marker.

    Blood work isn't always a good indicator.

    Keep us posted, we care,

    Jennifer
  • JackieA
    JackieA Member Posts: 150
    #4
    grams2jc said:

    I'm sorry about all you are going thru
    Before my mastectomy in 2010 all of my blood work was in normal limits. Before the dx of my brain mets my CBC was normal as was my tumor marker.

    Blood work isn't always a good indicator.

    Keep us posted, we care,

    Jennifer

    Thank you for your response.
    Thank you for your response. No the dr did not give him a time limit. Over the years, my husband has lost a tremendous amount of weight. Anyway, he is 43, but looks like an eighty year old man. He is on a walker. I love him so much. I just cry inside and out because he is suffering tremendously. His quality of life is almost zero. He is in bed most days and it has been like this for over a year. He feels good when he is heavily medicated. He's been going to the dr at least 2 xs a week in the last couple of months. Each time he gets fluids and an extra shot of dilaudid. The dr has been giving him testosterone and it peaks about the 2nd or 3rd day and it is down hill again. I am really discouraged to see him; He gets zometa, avastin, halaven, neulasta when he gets a treatment. He has been on so many drugs I can't name them. At first...they didn't even give him a come back time, until my husband asked if he could. Not following...
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #5
    JackieA said:

    Thank you for your response.
    Thank you for your response. No the dr did not give him a time limit. Over the years, my husband has lost a tremendous amount of weight. Anyway, he is 43, but looks like an eighty year old man. He is on a walker. I love him so much. I just cry inside and out because he is suffering tremendously. His quality of life is almost zero. He is in bed most days and it has been like this for over a year. He feels good when he is heavily medicated. He's been going to the dr at least 2 xs a week in the last couple of months. Each time he gets fluids and an extra shot of dilaudid. The dr has been giving him testosterone and it peaks about the 2nd or 3rd day and it is down hill again. I am really discouraged to see him; He gets zometa, avastin, halaven, neulasta when he gets a treatment. He has been on so many drugs I can't name them. At first...they didn't even give him a come back time, until my husband asked if he could. Not following...

    You have questions that need answers
    I think sometimes our docs don't tell us things unless we ask. You've already started a list by your posting here. Please sit down with your husband and make a list of questions for his oncologist. Then either make an appointment or call the oncologist and get the answers you need. Most importantly, ask your husband what HE wants to do and know (maybe you already have). It sounds like he's in a lot of pain and has been for a long long time and that the chemo has really taken a toll on his body. I'm so sorry.

    Some of the questions you've posed already:

    How long is this "chemo break"?

    How will you know when/if we can restart it? And what will he be given?

    What can be done if we can't restart chemo? Are there other treatment options?

    What does the normal blood mean in terms of disease progression?

    What do we do now?

    Sending lots of hugs and prayers to you and your husband. Only his oncologist can answer your questions, but you have to ask them. I think sometimes they expect you to know things your don't.

    Suzanne
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #6
    Jackie, I'm stage IV also,
    Jackie, I'm stage IV also, although my mets are not as widespread as your husband's. In my case, the blood work only determines if I am able to have the next chemo. In my case, blood tests are not a reliable indicator of progression/stability. I have regular CT scans to monitor progression.

    Do you have your husband's permission to speak with the doc on his behalf? If so, you might consider a consultation with the doc without your hubby to get your questions answered. Ask to be scheduled for at least an hour, maybe two, so the doc has plenty of time to devote to you. Have someone stay home with your hubby, and someone else give you a ride to the doc. You might also consider someone you trust in the appointment with you...there is often so much information it is hard to retain all of it. Ask the doc to be frank and to speak in layman's terms. If you don't understand something, ask the doc to explain again.

    I know how I feel after 9 months of chemo, it's hard to image how he must feel after 3 years. I also think the role of caregiver is often more difficult than the direct battle your husband has. Have you asked about resources/programs available for you, the caregiver? What are you doing to take care of yourself? How do you relieve the stress that comes with seeing the one you love in pain? Please take care of yourself too.

    Hugs,

    Linda
  • SIROD
    SIROD Member Posts: 2,194 Member
    #7
    Palliative Care
    Jackie,

    Have you thought about contacting Palliative Care for your husband?

    http://www.getpalliativecare.org/


    Best,

    Doris
  • jnl
    jnl Member Posts: 3,869 Member
    #8
    grams2jc said:

    I'm sorry about all you are going thru
    Before my mastectomy in 2010 all of my blood work was in normal limits. Before the dx of my brain mets my CBC was normal as was my tumor marker.

    Blood work isn't always a good indicator.

    Keep us posted, we care,

    Jennifer

    I am so sorry to read this
    I am so sorry to read this about your husband. Keeping you both in my prayers.


    Hugs, Leeza
  • AngieD
    AngieD Member Posts: 493
    #9
    SIROD said:

    Palliative Care
    Jackie,

    Have you thought about contacting Palliative Care for your husband?

    http://www.getpalliativecare.org/


    Best,

    Doris

    Jackie, I'm so sorry to read
    Jackie, I'm so sorry to read this. Both you and your husband must be totally exhausted. Blood tests don't really tell anything about what the cancer is doing or pick up a progression.
    I think all the suggestions about discussing this with your husband and with the oncologist, with or without your husband, sounds like an excellent plan. I participate in the Esophageal Cancer board on CSN also, since my husband has Stage IV EC. So many on there post about the great benefits of calling in Hospice sooner rather than later for some real quality of pain free life when the body is worn out from treatments. Just a thought, but might be worth at least looking at.
    You're both in my thoughts and prayers!
    Angie
  • camul
    camul Member Posts: 2,537
    #10
    Hi JackieA
    I agree with everyone here. I am also stage iv with mets to the bones, like your husband, mine is widespread. I have mets to almost all bones, hips, ribs, head, forehead, knees, now below the right knee, both femurs, clavicles, humorous, while on the halaven, it continued to grow. I was also diagnosed at the beginning of this stage iv journey with mets to the skin.

    I was going to take a little break so they could do tests, but ended up getting a chest ct 2 weeks into the 4 week break the first week of November, and while on halaven it spread to the connective tissue in my ribs and chest wall. It also showed mets to the liver, but small enough not to cause my liver not to function.

    Now I am on Navelbine better balance, less neuropathy, and no brain issues. It has its own set of se. Mainly low blood counts and plenty of UTI infections from the worn out immune system. Also on a steroid based anti anti nausea and had cataracts, they were removed last week.
    Will have a biopsy on the soft tissue and skin surrounding my hips and lower back on Friday. My skin is like orange peal with ripples, and became very thick causing pain to hip area. Hoping this is just an accumulation of fluids, but doctor says he has never seen this. Almost looks like the pictures of inflamatory bc, but won't know until next week.

    I will start my first real break mid June to mid July, since Jan 12 2011, other than the breaks to run pet and bone scans. I was debating on stopping, trying to decide if quantity of time is better than quality, but my boys want me to continue. Agreed to a break, another round of some chemo then making a decision. It is a hard journey.

    Even while on chemo the cancer grows, and my blood is mainly only checked for chemo eligibility. Even some of the pet scans have showed that the tumors were gone, only to have a bone scan and MRI which showed that the cancer had grown so much that I had holes throughout the spine.

    I wish you both the best.
    Carol
  • Angie2U
    Angie2U Member Posts: 2,991
    #11
    Gabe N Abby Mom said:

    Jackie, I'm stage IV also,
    Jackie, I'm stage IV also, although my mets are not as widespread as your husband's. In my case, the blood work only determines if I am able to have the next chemo. In my case, blood tests are not a reliable indicator of progression/stability. I have regular CT scans to monitor progression.

    Do you have your husband's permission to speak with the doc on his behalf? If so, you might consider a consultation with the doc without your hubby to get your questions answered. Ask to be scheduled for at least an hour, maybe two, so the doc has plenty of time to devote to you. Have someone stay home with your hubby, and someone else give you a ride to the doc. You might also consider someone you trust in the appointment with you...there is often so much information it is hard to retain all of it. Ask the doc to be frank and to speak in layman's terms. If you don't understand something, ask the doc to explain again.

    I know how I feel after 9 months of chemo, it's hard to image how he must feel after 3 years. I also think the role of caregiver is often more difficult than the direct battle your husband has. Have you asked about resources/programs available for you, the caregiver? What are you doing to take care of yourself? How do you relieve the stress that comes with seeing the one you love in pain? Please take care of yourself too.

    Hugs,

    Linda

    I will certainly put your
    I will certainly put your husband in my prayers Jackie and sending you a big hug.
  • JackieA
    JackieA Member Posts: 150
    #12
    camul said:

    Hi JackieA
    I agree with everyone here. I am also stage iv with mets to the bones, like your husband, mine is widespread. I have mets to almost all bones, hips, ribs, head, forehead, knees, now below the right knee, both femurs, clavicles, humorous, while on the halaven, it continued to grow. I was also diagnosed at the beginning of this stage iv journey with mets to the skin.

    I was going to take a little break so they could do tests, but ended up getting a chest ct 2 weeks into the 4 week break the first week of November, and while on halaven it spread to the connective tissue in my ribs and chest wall. It also showed mets to the liver, but small enough not to cause my liver not to function.

    Now I am on Navelbine better balance, less neuropathy, and no brain issues. It has its own set of se. Mainly low blood counts and plenty of UTI infections from the worn out immune system. Also on a steroid based anti anti nausea and had cataracts, they were removed last week.
    Will have a biopsy on the soft tissue and skin surrounding my hips and lower back on Friday. My skin is like orange peal with ripples, and became very thick causing pain to hip area. Hoping this is just an accumulation of fluids, but doctor says he has never seen this. Almost looks like the pictures of inflamatory bc, but won't know until next week.

    I will start my first real break mid June to mid July, since Jan 12 2011, other than the breaks to run pet and bone scans. I was debating on stopping, trying to decide if quantity of time is better than quality, but my boys want me to continue. Agreed to a break, another round of some chemo then making a decision. It is a hard journey.

    Even while on chemo the cancer grows, and my blood is mainly only checked for chemo eligibility. Even some of the pet scans have showed that the tumors were gone, only to have a bone scan and MRI which showed that the cancer had grown so much that I had holes throughout the spine.

    I wish you both the best.
    Carol

    Thanks to everyone. We just
    Thanks to everyone. We just got back from the hospital today. He has been in the hospital since Tuesday to help manage pain. I don't understand a lot. Carol, all I can say is Wow! What you have shared has been my thoughts for a long time. I have always known that about the cbc. Okay...with that said. My husband had another CT scan. That is all that he is getting. No Pets, Bones or MRI in a year! We were told 2 weeks ago that he had a spot on his liver. But we were told in the hospital-he had a another ct to the chest- that the disease was stable. His pain has increased tremendously. I am not understanding this at all. My husband basically does not want me to talk about it at all with his dr. While in the hospital he was on a dilaudid pump and 125 mcg of fentanyl. He was sent home to continue the 125 mcg of fentanyl and has the option of increasing if he got back into pain. His pain is getting worse every 2 or 3 months, plus dehydration once a week. He was given fluids while there. Has anyone experience this- continues to get fluid? Again...but bone disease is stable. 9mm showed up April 30th. This is STUPID!
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #13
    JackieA said:

    Thanks to everyone. We just
    Thanks to everyone. We just got back from the hospital today. He has been in the hospital since Tuesday to help manage pain. I don't understand a lot. Carol, all I can say is Wow! What you have shared has been my thoughts for a long time. I have always known that about the cbc. Okay...with that said. My husband had another CT scan. That is all that he is getting. No Pets, Bones or MRI in a year! We were told 2 weeks ago that he had a spot on his liver. But we were told in the hospital-he had a another ct to the chest- that the disease was stable. His pain has increased tremendously. I am not understanding this at all. My husband basically does not want me to talk about it at all with his dr. While in the hospital he was on a dilaudid pump and 125 mcg of fentanyl. He was sent home to continue the 125 mcg of fentanyl and has the option of increasing if he got back into pain. His pain is getting worse every 2 or 3 months, plus dehydration once a week. He was given fluids while there. Has anyone experience this- continues to get fluid? Again...but bone disease is stable. 9mm showed up April 30th. This is STUPID!

    Jackie .. all I can offer is prayers .. and gentle
    cyber hugs for you. Continue the fight, gather all your will -- and proceed forward -- Never, ever stop your questions, or fight for hubby!

    Strength, Courage and Hope for a Cure.

    Vicki Sam
  • jnl
    jnl Member Posts: 3,869 Member
    #14
    JackieA said:

    Thanks to everyone. We just
    Thanks to everyone. We just got back from the hospital today. He has been in the hospital since Tuesday to help manage pain. I don't understand a lot. Carol, all I can say is Wow! What you have shared has been my thoughts for a long time. I have always known that about the cbc. Okay...with that said. My husband had another CT scan. That is all that he is getting. No Pets, Bones or MRI in a year! We were told 2 weeks ago that he had a spot on his liver. But we were told in the hospital-he had a another ct to the chest- that the disease was stable. His pain has increased tremendously. I am not understanding this at all. My husband basically does not want me to talk about it at all with his dr. While in the hospital he was on a dilaudid pump and 125 mcg of fentanyl. He was sent home to continue the 125 mcg of fentanyl and has the option of increasing if he got back into pain. His pain is getting worse every 2 or 3 months, plus dehydration once a week. He was given fluids while there. Has anyone experience this- continues to get fluid? Again...but bone disease is stable. 9mm showed up April 30th. This is STUPID!

    The bone disease being
    The bone disease being stable is good news Jackie. I don't know what to say about the pain he is in. I don't understand why they can't find out where it is coming from and help him with it.

    Prayers to you and your husband,

    Leeza
  • Alexis F
    Alexis F Member Posts: 3,598
    #15
    VickiSam said:

    Jackie .. all I can offer is prayers .. and gentle
    cyber hugs for you. Continue the fight, gather all your will -- and proceed forward -- Never, ever stop your questions, or fight for hubby!

    Strength, Courage and Hope for a Cure.

    Vicki Sam

    Lots of positive thoughts,
    Lots of positive thoughts, cyber hugs and prayers for your husband and you.


    Lex

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