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just me

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About just me

  • Birthday April 17

Profile Information

  • City
    lakevillle
  • US State (if applicable)
    MASSACHUSETTS
  • Province or district (if non-US)
    United States
  • Country
    usa
  • Gender
    Female
  • Status
    Not a patient
  • Interests
    Helping my husband fight cancer.

Recent Profile Visitors

273 profile views
  1. Steve I lost my amazing husband September 30th 2020. I just visited the forums for the first time today and saw your post. I am so sorry for your loss. I hate this disease and pray the find a cure. Our experience with hospice was similiar to yours. They expected a week or more and he past in a few days. I wish you the best in the future days and hope you can find peace. Just me
  2. just me

    decline

    Hello everyone, Brain meets were diagnosed. We quickly were transsfered to neurology and went from one oncologist to the surgeon for a biopsy. On Friday September 18th he walked into the hospital. Monday the 21st he was sent home after suffering through a craniotomy with a tumor resection. It doesnt make sense to me because his lungs were inoperable, so why would they be able to operate on his brain? By the 23 he could no longer hold a spoon to feed himself. Although radiation was offered we declined. I didnt feel he had enough left in him to handle more treatment. Hospice began on Friday , one week after surgery and he went home to the Lord last night. Hospice was hard. I dont know if anyone has had experience using them, or if our case was unusual. We basically medicated my sweet husband 24/7 around the clock to make sure we kept the seizures under control. Then we slowly watched him die. Although he was surrounded by love, it was the hardest thing our family has ever done. Hospice quides but you and is there for support but it is the family that provides the comfort care. Prayers for everyone in this group and maybe someday they will find a cure. Just me
  3. Steve and Diane, I think of you too. This cancer is horrible. We have refused whole brain radiation and hospice has been called. In 24 hours he has lost all ablilty to take care of himself. Steve I wish you the best with your wife. Diane praying for you that your mammogram stays clear. Just me.
  4. Hi Steve, I have followed your journey . My husband has tumor spread to his brain, and afteer a craniotomy to determine diagnosis, they are recommending WBR. He is so weak, it has been suggested we contact hospice. I am not sure I am ready for this. After reading your post and seeing your wife's relief, maybe it is the next step for us too. Enjoy your time together. just me
  5. Hi Steve, My husband has small cell extensive. Dignosed November 2019. I don't get on here too often, but I try to comment when I do. Just me
  6. Diane, I am so sorry ... . I wish I could hug you, and help you cry. He fought a good fight. Prayers for healing. Cindy
  7. Hi Diane, Sorry to hear about brain mets. This disease is mean.Hope the steroids and radiation help. We aren't scheduled for a MRI in the near future. We will have a scan after 2 more cycles of the irinotecan. Although, hubby is not tolerating it well and moral is low. We are in Massachusetts, our stay at home order has been extended to May 14th. The silver lining is more time together. just me
  8. Hi Diane, I am not sure how to update the treatment plan the way you do. But latest scans April 9th, show disease progression. Things are changing, in the midst of this Corona virus , we received the news over the phone. My husband will recieve a new chemo treatment ironotecan. Once a week for three weeks and a repeat scan. Trying to remain positive and enjoy the day. just me Diane I will add a signature to my profile, Thank you for the information. I was wondering why the Dr. chose Irinotecan over Topetcan, but I wasn't in the room and it was difficult to hear due to the masks and the telemed connection . I will be following your huband's reports as well.
  9. Hi Diane, I am not sure how to update the treatment plan the way you do. But latest scans April 9th, show disease progression. Things are changing, in the midst of this Corona virus , we received the news over the phone. My husband will recieve a new chemo treatment ironotecan. Once a week for three weeks and a repeat scan. Trying to remain positive and enjoy the day. just me
  10. Hi Steve, I have often wondered the same thing. How do we know we are making the best choices? We are at being treated in a highly qualified hospital in Boston, yet I felt from the beginning that they aren't being aggressive enough. We were placed in the palliative care category from the very first appointment. Four rounds of carboplatin, etoposide and tecentrig, followed by just the immuntherapy for 3 cycles. We now have disease progression. I think we are all doing the best we can and we really dont have the time to "shop around". You are not alone. Cindy
  11. Happy New Year, Diane, we seem to be on the same treatment plan. I wondered about side effects from the Neulasta. He seemed weaker after receiving the medicine than the previous treatment cycle. We finished third cycle, will start the fourth on Jan 16th. I am not sure what the next step will be. My husband is officially retiring, he ran his own landscape construction company for the past 35 years, and just doesn't have the energy to continue. But at 66 he deserves a rest. I am also retired. On a positive note, he seems to have his appetite back. Justme
  12. Hi Diane, Sorry I did not respond sooner. I forgot to book mark this page. My husband's journey is very similar to your husband's. We have some mets in the liver, lymph nods and bones. Our cocktail is the same as the one you are being treated. We had quiet holidays, the white cells dropped extremely low before Thanksgiving so we were isolated for a week. The second round they gave us the Neulasta on his arm. Which seemed to help, but he was fatigued much longer. We were back on the 26 of Dec. for more scans and a third round if the previous treatment was effective. The mass is shrinking and so is the lesion on his liver. Terrific news for us. Even the Dr. was smiling. We just finished round 3. Today the nurse told us about the Claritin. I will give it to him in the morning. We also had problems with constipation and was told to use Miralax and a stool softener. My husband is 65. We have 2 grown children. He was a smoker in the past, therefore we were receiving scans every six month for scarring and a stable nodule. This cancer was not there during the last scan less than six month prior. It is a scary, aggressive cancer, and I empathize with you. Just Me
  13. My husband also was diagnosed this week with small cell, extensive. It is very scary. He seems to be declining so fast. We are wondering if he will survive treatment. There is comfort knowing others have made it through. update April 10th,, 4 rounds carboplatin, etoposide and tecentriq, showed a good amount of shrinkage. The plan was to continue with just the immunotherapy which did not work. Beginning a new second line of chemo.
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