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  JMS posted an update

  Hello to all pancreatic cancer sufferers. I wanted to provide an update of what's been happening since I went for the testing phase of the clinical trial at Johns Hopkins. As it ended up, I was admitted to the hospital due to blood results showing abnormal liver stats. I was released from Hopkins on Friday, November 29 following two surgeries to clear an obstruction from one of my bile ducts. In the second surgery, doctors had placed a tube across my liver on the inside going into my intestines, with an external tube to permit quick access to the area in case it was needed. Unfortunately, it was needed. By the next day, I was in the emergency room of the local hospital in acute pain. They were unable to diagnose the problem fully, so I returned to Johns Hopkins on Sunday, December 1. I was readmitted and again scheduled for surgery on the following day. What doctors had anticipated as a simple procedure turned out to be quite complicated and so surgery took much longer than expected. A much more sturdy tube was again put through my liver and again connected to an external tube. Doctors indicated that the external tube could be internalized at a later date.
  Meanwhile, although the bile duct obstruction had not been diagnosed as cancerous, it was assumed to be so and thus the clinical trial committee judged my cancer to be "in progression" and I could no longer qualify for the trial. Not only was this an enormous blow to me, it also meant that I again needed to change chemo regimens, this time to something called GTX. So far, I have had two infusions of the new chemo and while the time spent in the hospital has been reduced and I no longer need to carry the slow drip cartridge for the additional 48 hours, this regimen has worsened the neuropathy and also impacted my blood stats negatively. I am no longer able to use my fingers to type, so we have installed new software that allows me to dictate this text. The neuropathy in my feet has also worsened to such an extent that it's become difficult to walk and my feet feel like painful concrete blocks. I have serious concerns over how long I will be able to maintain the current course of chemo, and there is but one additional type of chemo left (to treat pancreatic cancer) and this one too causes neuropathy.
  I am, of course, still pursuing other clinical trial possibilities, but seem to find myself in a bizarre Catch-22 in that most trials require a measurable tumor, and the one I am assumed to have (although sufficient to disqualify me from the Hopkins trial) had not yet been formally diagnosed as a tumor. I will be having my next set of CT scans at Hopkins on January 21 to see if we can clarify this issue and to prepare for yet another surgery to clear or get around the obstruction.
  Last Thursday, January 2, the surgeon at the local Virginia hospital attempted to replace the liver tube with a stent that ultimately would have enabled doctors to remove the external tube as well. Unfortunately, the surgery was not successful as the original operation had not left the necessary space to enable placement of the stent. Equally unfortunately for me, the surgeon chose not to use sedation during the procedure and it was a most uncomfortable process to be on the receiving end. It appears that I will now need to return once again to Johns Hopkins to explore options on how to deal with the bile duct blockage. With best regards to all of you, JMS

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  about 7 years ago

  11 Comments

  • 

    Russ

    Hi JMS,
    I am glad that you have been in touch with PanCan. I just wanted you to know the response from the person I contacted as soon as I read your message "posted update." Here is her response:

    Hi Russ,
    It is a pleasure to hear from you. You were correct in referring her to the website, as there is a wealth of information there. Additionally, so that she can receive information personalized to her needs, I would suggest that you have her contact one of our PALS Associates. She can reach a PALS Associate by calling our toll-free number,[phone number redacted], between 7 a.m. and 5 p.m. Pacific Time or emailing [email redacted]. The PALS Associate would be able to run a personalized clinical trial search based on JMS’s diagnosis and treatment history and provide a list of trials she may qualify for. As JMS mentioned in her post, most clinical trials do require measurable disease, however there have been a handful of trials that I have seen in the past that do not have that requirement. The PALS Associate can also provide her with links to information on managing her neuropathy, as well as a wealth of other information including, but not limited to treatment options outside of clinical trials, diet and nutrition, lists of doctors specializing in pancreatic cancer, symptom and pain management, risk factors and genetic studies, and links to support resources.

    The other way to reach a PALS Associate, if JMS is specifically interested in clinical trials, is to fill out this form on our website:

    http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/clinical_trials/find_clinical_trials.php, provide her email address or phone number in the form, and a PALS Associate will reach out to her to complete the clinical trial search and discuss any other questions she may have.

    I hope this is helpful, Russ. If you have any other questions or need additional resources, please do not hesitate to contact me.

    Sincerely,
    Cassadie

    JMS, Hopefully there is something in Cassadie's email that you haven't tried yet. My best to you and please be sure to keep us up to date.
    Russ

    • 1 Like

    about 7 years ago
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    JMS

    Thanks again, Russ. I have filled out the form for the clinical trial, but so far, haven't found one that doesn't required a "measurable" tumor. But, I'm continuing the search and am on a waiting list for a trial in the Philly area. Many thanks, JMS

    • 0 Like

    about 7 years ago
  • 

    lucky1571

    Praying for you. Sorry, to hear about your problems you are having. Hopefully, pan can can find a trial for you. Keeping you in my prayers.

    • 1 Like

    about 7 years ago
• 

  JMS posted an update

  Carm - you're a lifesaver - again. Thanks so much. The biopsy is scheduled for Wednesday (having to be postponed from yesterday because no one told me that taking fish oil supplements was contraindicated for a biopsy - and I have to wait for 6 days to get the oil out of my system). Oh well, am hoping for the best. JMS

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  almost 8 years ago

  1 Comment

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    GregP_WN

    Carm is usually very helpful, we are glad to have her here with us. Hope your biopsy goes well.

    • 1 Like

    almost 8 years ago
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  JMS posted an update

  I too had issues with a low white blood count, but opted to use the Neupogen (which in my case, required 2 shots administered over 2 days) rather than the other drug that lasts longer, but that causes the bone aches. It worked very quickly, with few side effects. As I head into my last treatment round of 7 IV-administered chemo (gemzar), I know I'll have the same problem and plan to use the Neupogen whenever possible. Good luck.

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  over 8 years ago
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  JMS posted an update

  Would love to connect with other pancreatic cancer patients or survivors.

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  over 8 years ago

  1 Comment

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    KarenG_WN

    You may want to check out the journey of survivor @stillkickin as well as @hilary, who is a caregiver to her dad.

    • 0 Like

    over 8 years ago

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