New mets

38sallyb
38sallyb Member Posts: 87
edited March 2014 in Esophageal Cancer #1
Jim has had back pain since March, right at the end of radiation. For a week, though, it has been so severe we had to up his pain medication. Nothing lit up on the PET scans, so on Friday he had another MRI to see if there is a fracture, and YES! There is a fracture which has been cemented. However, his back pain has not been relieved because they found a tumor in L2, filling the cavity. Bummer. Kept him in hospital Friday night and released him late Saturday night against our wishes.
His pain was NOT controlled by our estimation, so the weekend was horrible. Our oncologist is out of town until Wednesday and we couldnt get the hospital Dr to talk to us after he was discharged.

We went for consult yesterday to see about CyberKnife radiation. If Medicare will pay, he will start that next Monday. This week he will go through all the tests for that procedure.
,
He is very weak and frail because with the pain, he hasn't been eating or drinking as much as he needs. I'm giving him Ensure and Boost with added protein powder, but he's pretty dopey with the morphine. The morphine injections he had in the hospital did not make him dopey, he ate well and even watched some football on Saturday afternoon. The oral meds just make him sleepy and dopey, but don't relieve his pain nearly as well.

We did get Home Health to come out and give him fluids. The hospital Dr did not want to give it to him there. He said Jim should be able to drink enough to keep hydrated. I tried to tell him he can not drink enough to replace what he vomits. And the liquid morphine for breakthrough pain made him vomit. Even with Zofran which usually works very well for him.

Our grandson, Jake, was a medic when he was in Iraq and suggested we ask for "lactated ringers" for IV fluid. The nurse who wrote the order thought that was a great idea, so he is getting that now, it runs for 20 hrs. It is used by the Army for burn victims, has electrolytes and vitamins etc included, so it's better than saline for someone in fragile condition. We'll let you know if it works better than just water.

This certainly has been a roller coaster ride, but the Dr yesterday said he thought killing this tumor and relieving the pain would bring Jim back to pretty good condition. And he was pretty confident that would be the result. He said he saw no other "shadows" except the liver tumors that have been embolized. Nothing in the esophagus, and the same lymph nodes as at first diagnosis, just much smaller.

Just 3 weeks ago today Jim had his hernia repaired and felt so good he washed his truck a couple of days laterI

Sally

By the way...we are Huskers. Originally from Grand Island and Hastings, we moved to Colorado in 1986 and then went full time RVing in 2004. Now we are in San Antonio having these treatments. We have been VERY pleased with our Drs here.

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    sorry to hear
    Hi Sally,
    So sorry to hear what Jim has been going thru. Hope that the ringers solution perks him up, but boy to be in that much pain without solid relief is terrible. My prayers and thoughts will be with you all. It is great that the dr is so hopeful that the spinal mass can be cleared up. take care and prayers will be with you all.
    Donna70
  • paul61
    paul61 Member Posts: 1,392 Member
    #3
    I hope Jim gets better news on Wednesday
    Sally,

    I am very sorry to hear of Jim’s back pain and related tumor. It has to be frustrating to have to wait until Wednesday to be able to talk to someone who can offer real relief.

    I hope you get good news on Wednesday both in terms of more effective short term treatment for his pain and longer term treatment to address the tumor in his spine.

    You and Jim will be in our prayers.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Unknown
    Unknown
    #4
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    Unknown
    #5
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  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #6
    Sally,
    Sorry to hear about
    Sally,
    Sorry to hear about the new mets.....
    You are so right....we are all on such a roller coaster ride. I am praying you can get the pain under control, you are able to get the cyberknife radiation and it does the trick.
    Try to stay strong,
    Jane
  • K_ann1015
    K_ann1015 Member Posts: 500
    #7
    prayers--for you both & Dr's
    Sherry, sorry to hear about the mets to back--and esp. the pain. It seems like maybe there are some ideas--but so hard for him to have to wait for results---and hard for you to be the caregiver... Many prayers for some type of pain relief asap... and for the team of Dr's to come together to address this---not just send Jim home without speaking to you all.
    Kim
  • 38sallyb
    38sallyb Member Posts: 87
    #8
    The Radiation Oncologist
    The Radiation Oncologist told us that he reviewed the films taken of the chemo-embolization and all liver tumors are necrotic radiating out from their centers, which is a good thing! There are no noticeable areas of activity anywhere except residual lymph nodes which are much smaller than when originally dx'd and have not changed in the last 3 PET scans and this tumor within the verterbra (L2)
    We got the word today that Medicare will cover the procedure and he went for a "staging CT scan" today. The morphine makes him almost comatose, so we used a wheelchair and, taking the IV fluids with us, went for the scan. Took about 15 minutes from getting to the center until he was finished. The plan is to begin treatment on Monday. There will probably be 3 treatments, although they can go up to 5 if needed.
    Lying on the table was difficult, since lying flat without support under his knees is painful, but he managed to get through it and came home to rest. (The Home Health nurse came later and increased the rate of flow of the IV, so he should get it all finished this evening.)
    I asked Dr Eyre about his prognosis and he said that based upon his examination of all the relevant films, reports and his quite detailed examination yesterday, he sees Jim as a basically healthy individual who has been severely debilitated by pain and has one basic problem, cancer. He believes that when the pain is abated, Jim will be able to begin the process of rebuilding muscle mass and energy level. We are looking forward to the treatment and hopeful that his odds of over 90% success rate in reducing or eliminating the pain. Jim has always had a high pain tolerance, so he said he could live with a pain level of 3-4. Wouldn't like it, but could live with it! It's the 9-10 level he hates!
    Sally
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #9
    38sallyb said:

    The Radiation Oncologist
    The Radiation Oncologist told us that he reviewed the films taken of the chemo-embolization and all liver tumors are necrotic radiating out from their centers, which is a good thing! There are no noticeable areas of activity anywhere except residual lymph nodes which are much smaller than when originally dx'd and have not changed in the last 3 PET scans and this tumor within the verterbra (L2)
    We got the word today that Medicare will cover the procedure and he went for a "staging CT scan" today. The morphine makes him almost comatose, so we used a wheelchair and, taking the IV fluids with us, went for the scan. Took about 15 minutes from getting to the center until he was finished. The plan is to begin treatment on Monday. There will probably be 3 treatments, although they can go up to 5 if needed.
    Lying on the table was difficult, since lying flat without support under his knees is painful, but he managed to get through it and came home to rest. (The Home Health nurse came later and increased the rate of flow of the IV, so he should get it all finished this evening.)
    I asked Dr Eyre about his prognosis and he said that based upon his examination of all the relevant films, reports and his quite detailed examination yesterday, he sees Jim as a basically healthy individual who has been severely debilitated by pain and has one basic problem, cancer. He believes that when the pain is abated, Jim will be able to begin the process of rebuilding muscle mass and energy level. We are looking forward to the treatment and hopeful that his odds of over 90% success rate in reducing or eliminating the pain. Jim has always had a high pain tolerance, so he said he could live with a pain level of 3-4. Wouldn't like it, but could live with it! It's the 9-10 level he hates!
    Sally

    Hello Sally and Jim
    Wow! You
    Hello Sally and Jim
    Wow! You have been put through the ringer for sure! I know exactly what you mean when you are talking about the oral form of morphine. It had the same effect on my dad. Way too out of it and sleeping all the time. Thank God for your grandson and his info on the pain management idea. I would also like to say thank God for your medicare! They have proven to be wonderful for you. Those are two things to be thankful for. With a 90% success rate, you can not go wrong! God bless you both and may he continue to be with you throughout this journey. We will continue to think of you and pray for you. Keep in touch.
    Tina
  • Hope_Faith
    Hope_Faith Member Posts: 150
    #10
    sorry
    So sorry to hear all that you guys are having to go through. Glad to hear that the Dr. thinks he will be just fine though -- hoping and praying for you all. Keep us posted.
    Take care and God bless!
  • 38sallyb
    38sallyb Member Posts: 87
    #11
    38sallyb said:

    The Radiation Oncologist
    The Radiation Oncologist told us that he reviewed the films taken of the chemo-embolization and all liver tumors are necrotic radiating out from their centers, which is a good thing! There are no noticeable areas of activity anywhere except residual lymph nodes which are much smaller than when originally dx'd and have not changed in the last 3 PET scans and this tumor within the verterbra (L2)
    We got the word today that Medicare will cover the procedure and he went for a "staging CT scan" today. The morphine makes him almost comatose, so we used a wheelchair and, taking the IV fluids with us, went for the scan. Took about 15 minutes from getting to the center until he was finished. The plan is to begin treatment on Monday. There will probably be 3 treatments, although they can go up to 5 if needed.
    Lying on the table was difficult, since lying flat without support under his knees is painful, but he managed to get through it and came home to rest. (The Home Health nurse came later and increased the rate of flow of the IV, so he should get it all finished this evening.)
    I asked Dr Eyre about his prognosis and he said that based upon his examination of all the relevant films, reports and his quite detailed examination yesterday, he sees Jim as a basically healthy individual who has been severely debilitated by pain and has one basic problem, cancer. He believes that when the pain is abated, Jim will be able to begin the process of rebuilding muscle mass and energy level. We are looking forward to the treatment and hopeful that his odds of over 90% success rate in reducing or eliminating the pain. Jim has always had a high pain tolerance, so he said he could live with a pain level of 3-4. Wouldn't like it, but could live with it! It's the 9-10 level he hates!
    Sally

    New Mets
    Thanks to everyone for your good thoughts and prayers for us. We saw Jim's oncologist yesterday. Our daughter flew in to be with us and our son joined us, so our immediate family was there. Jim was pretty out of it, could not really follow the conversation much because of the pain meds, so the Dr put him in the hospital so they could give him the injectable morphine that does not make him so loopy, deal with his constipation, have a blood transfusion, more hydration and physical therapy! He will stay until his CyberKnife treatment on Monday. Then, hopefully, the pain will lessen and he
    can begin his upward climb!
    His liver function is back to normal after the chemo-embolization on the 14th, and cancer markers have come down from their high, but his hemoglobin is still dropping, so he got another transfusion last night.
    Our daughter, Betsy, will go up to be with him this morning while I do some necessary things I haven't been able to do lately. AND I slept 6 hours without waking, which is very good for me! I'll go up later and make sure all is well.
    We are so grateful to hear from those on this board, we DO know what each one is going through as they walk this difficult trail. But we are confident in God's Grace and Mercy and, most of all, in His Love for each of his children.
    Sally
  • cfight
    cfight Member Posts: 69
    #12
    Hi Sally,
    I'm sorry to hear
    Hi Sally,

    I'm sorry to hear about Jim's pain. It sounds like there's a solid plan in place to relieve the pain which is great. After reading your post, I can't believe how incredibly strong you are. Thinking of you and your family.

    Carolyn
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #13
    38sallyb said:

    New Mets
    Thanks to everyone for your good thoughts and prayers for us. We saw Jim's oncologist yesterday. Our daughter flew in to be with us and our son joined us, so our immediate family was there. Jim was pretty out of it, could not really follow the conversation much because of the pain meds, so the Dr put him in the hospital so they could give him the injectable morphine that does not make him so loopy, deal with his constipation, have a blood transfusion, more hydration and physical therapy! He will stay until his CyberKnife treatment on Monday. Then, hopefully, the pain will lessen and he
    can begin his upward climb!
    His liver function is back to normal after the chemo-embolization on the 14th, and cancer markers have come down from their high, but his hemoglobin is still dropping, so he got another transfusion last night.
    Our daughter, Betsy, will go up to be with him this morning while I do some necessary things I haven't been able to do lately. AND I slept 6 hours without waking, which is very good for me! I'll go up later and make sure all is well.
    We are so grateful to hear from those on this board, we DO know what each one is going through as they walk this difficult trail. But we are confident in God's Grace and Mercy and, most of all, in His Love for each of his children.
    Sally

    You know we love ya...and we
    You know we love ya...and we are praying here. Wow, you have certainly been able to find the best of the best, and I am glad. They are not giving up and are working with Jim--probably because they can see he is in awesome shape and has great attitude. You do, too!

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