• StacyG's Avatar

    StacyG shared an experience

    Loss (Lost loved one): Just wanted to post an update. It has been a long time since I posted. My husband, Frank, lost his battle with CUP on May 3, 2012. He fought so hard but it is more difficult, I think, when your foe is unknown. I'm learning how to go on without him after 30 years, but so grateful he is no longer suffering.

    2 Comments
    • DeanaBeana's Avatar
      DeanaBeana

      I'm so sorry to hear of your loss. It saddens me anytime I hear of anyone losing a loved one. I know it must be so difficult for you. I hope the memories you two shared helps to ease your pain. Thinking of you!

      almost 4 years ago
    • LizGrant's Avatar
      LizGrant

      I am so incredibly sorry Stacy to hear of the loss of your husband to CUP :( I truly can't imagine your struggle. Please know you are in my thoughts and prayers. I know that isn't the most comforting thing probably, but I hope it helps to know we care. I agree with Deana, I hope your memories together will be of comfort to you.

      almost 4 years ago
  • StacyG's Avatar

    StacyG shared an experience

    Oh No (Pathological fractures): Frank has sustained additional pathological fractures in his right scapula and the right side of his pelvis. Both were caused by negligible force: tossing a towel aside and retching from nausea. He has not been able to walk more than a few steps with a walker due to pain,

  • StacyG's Avatar

    StacyG shared an experience

    Other Care (Second Opinion): Well, after 10 external radiation treatments that increased rather than decreased my husband's bone pain, we went to M.D. Anderson Cancer Center in Houston, TX for a second opinion. We were very impressed with the care provided there; however, we were still unable to locate the primary source of his cancer! The doctor there gave her recommendations for a chemotherapy regimen, but cisplatin is not available (we were told there is a nationwide shortage of this, among other, drugs) so the regimen had to be altered to Gemzar/carboplatin. There was not enough of the biopsy specimen to obtain a molecular profile which may have helped to narrow down the primary.

  • StacyG's Avatar
  • StacyG's Avatar

    StacyG asked a questionCancer of Unknown Primary

    Anyone dealing or have dealt with intractable bone pain from cancer?

    • KarenG_WN's Avatar
      KarenG_WN

      Hi Stacy,

      I just wanted to reach out to you. It must be so hard to see someone you love in pain. As you may know, WhatNext is new and growing. I am optimistic that someone will be able to give you some insight. In the meantime, I will do my best to find someone who can share their perspective on this issue with you.

      Please feel free to let me know if there is anything we can do to help...and please keep us posted.

      Stay strong,
      Karen

      about 5 years ago
    • judith4040's Avatar
      judith4040

      Stacy, I am not an expert but I will tell you what has helped me out with alot of my pain. I finally found a pain clinic and after I attempted fentalyn patches, every drug available orally (even a prescription of metadone), they placed a titaniam pain pump. This is how it works...they insert a catadral in your spinal cord and feed the tubing around your side. My pump sits in my far right stomach. I receive dilaudid 24 hours a day. I even have a little travel item that I can give myself 4 bolos of the medicine. Metroncic is the company who created the pump. You get your medicine refilled about every 2-3 months and its easy. The only downside is that you can't go through security gates at airports they have to pat you down but that is really nothing in my book if I am pain free. When I am hospitalized they can still hook me up to a pain pump where I can push a button every 8 minutes for pain relief. I don't think I will ever be pain free but the pump allows me to live a better life and it allows me time with my children and husband and I am not miserable. I wish there was a magic wand and I could help your husband be pain free. Take care and good luck.

      about 5 years ago
    • lovingspouse's Avatar
      lovingspouse

      My wife had surgery to stabilize a shoulder fracture (with a plate and screws) and also has a compression fracture of her spine. Her metastatic cancer has spread to the spine, shoulder,sternum and leg. However, she has had success with the radiation in the shoulder for lessening of pain but she still (9 weeks post surgery) has surgical pain. Recently, her oncologist discontinued her 60 mg. of oxycontin (30 mg. twice daily) and told her to vary her doses of dilaudid to as much as 6 mg. every three hours. We have since tried 4 mgs. every four hours with another two mgs. at the two hour mark. Check with your doctor about the dosages but, depending upon her pain level, these variations seemed to help. Good luck and God bless.

      about 5 years ago
  • StacyG's Avatar

    StacyG shared an experience

    Radiation (External radiation ): Just began radiation therapy to bone mets in right scapula, right hip/pelvis, and left femur. First treatment today - painful in moving him into position due to recent fracture and continued muscle spasms in left hip, otherwise uneventful. Have been told there will be minimal side effects, perhaps some dry skin at entry/exit sites, due to lesions being treated all being located on the "edges" and not involving his core or abdomen.