Encouragement Needed

seazr
seazr Member Posts: 2
in Lung Cancer #1

My husband was diagnosed with squamous NSCLC last May. Initially, it was thought to be "surgically curable" and he had a bilobectomy to remove an 8cm tumor. Three nodes that were removed with the surgery were found to be malignant. He had one attempt at Docetaxel/cisplatain for adjuvant chemo, but was immediately allergic to the Docetaxel. His chemo was revised to Cisplatain/Gemzar.

After one treatment, he came down with a lung infection which turned out to be Aspergillus. He was hospitalized for over 2 weeks and recovering at home for a couple of months. His Onc was becoming nervous and wanted to start up the chemo again. He started the Cisplatain/Gemzar before Christmas. After his second round, he developed blood clots. At that point his Onc said there is no clinical evidence that four treatments are better than two so let’s stop here and we'll address any problems if they arise.

He did a baseline scan to see where my husband was and to everyone’s shock, his cancer had spread to a mediastinal lymph node and some very small lesions were evident on the other lung. A biopsy confirmed squamous. Within a week or two, he developed balance issues and headaches. An MRI revealed a large and small lesion in the brain. He did 10 days of WBR. He has since started weekly treatments of Abraxane (Paclitaxel) with a break every fourth week. The plan is to re-scan after the second complete round.

My husband had a private conversation with his Oncologist yesterday. I'm not sure exactly how the conversation went but my husband was crying and saying he had two months to live. First, I think the "Onc may have given a range if my husband really persisted in an answer--I know he respects that people often don't want time frames attached to their lives. I would be amazed if two months was really accurate and he was on a two month chemo cycle. . . Anyway, my husband could really use some of your encouragement based on what I'm sure are similar experiences. Thanks again for all of the support I always get on this great forum . . .

Diane

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    Tell your husband

    Tell your husband that doctors don't know how long we have to live, only the man upstairs knows how long we have.  In 2010 my husband was diagnosed with laryngeal cancer and after treatment of radiation, chemo and surgery was NED for 14 months when a tumor was found at the cervical of his esophagus.  Surgery was ruled out.  He underwent another round of radiation and chemo.  He was NED for only 4 months when the tumor at the cervical of his esophagus returned and they found and biopsied small nodules in his right lung which proved to be SCC cancer same as his other cancers.  He refused all further treatments and that was in late January 2013.  Today he is still here and although pain level has increased and energy levels low, he can still do for himself.  We don't know, nor did our doctors say, how much time he has left.  We take each day as it comes and like I tell my husband, I could die before him because no one knows what the future holds.

    Wishing you both peace and comfort -- Sharon

  • dennycee
    dennycee Member Posts: 857 Member
    #3
    There are always clinical

    There are always clinical trials to be done.   Great inroads have been made on the PD1, PDL1 and anti PD1 trials.  For some it has been very successful.  

    A man I sometimes correspond with on another site had been through 4 different types of chemo and insisted that his dr give him the fifth type even though it had a very small response rate.   The onc was more concerned that  it would make him very sick in the last days of his life.  To everyone's shock and delight he had a tremendous response to it.  If you want to learn more about him he is on the inspire.com website and he goes by HeliEye.   

    Sharing his story was his way of saying don't give up hope.   Here at the ACS CSN, look up FeistyD and read her amazing story.  In the mean time if your husband has not signed a hippa release form giving his drs permission to share his info with you, please insist that he does it ASAP.  Also, if you do not yet have medical or durable power of attorney get those done.  He does not have to invoke them until he is ready.   

    Thank you for all you do as a caretaker.  I sincerely believe that your job is harder than the patients. 

    Edited to add: 

    a quick link to FeistyD's thread.  She's still going strong.  http://csn.cancer.org/node/245047

  • dorene1955
    dorene1955 Member Posts: 2
    #4
    Hi Diane I am so sorry for

    Hi Diane I am so sorry for all you and your husband are going thru. My partner of 11 years was diagnosed Valentines day with cancer in both lungs and a spot on his brain.He is going into his 3rd round of chemo and is in constant agonizing pain even though he is taking oxycodone and methadone.We are uninsured so this adds even more stress..I find myself crying all the time.I am 58 and he is 59.We are both terrified having lost parents to cancer.I just wanted to reach out to you and send some love and understanding of your heartache. Dorene

  • rdn2blazer
    rdn2blazer Member Posts: 46
    #5
    So sorry your family is going through this.

    If you want to, please read my thread about my cancer and my fight. I think it may give some hope. I have a pretty strong mentality through this fight. I WILL survive, no matter what in my mind. And if I don't at least I gave it hell. Peace.

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