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loveiseternal's Recent CancerCompass Activity

  • loveiseternal has replied to a post on the message board

    Lori, so sorry that you all are on this road. First of all, you are not failing anyone.  I remember how torn I felt as my sons were young (11 and 9) when my husband was first diagnosed.  I was trying to keep their lives "normal", but the whole household had to revolve around him. I am not sure what is causing your husband's issues as he is taking so many meds and tapering from radiation and steroids. ...

    June 09, 2017 view post
    • loveiseternal has replied to a post on the message board

      So sorry that you and your husband are on this road. I would recommend Dr. Howard Fine at Weill Cornell in NYC.  He was my husband's neuro-oncologist at the NIH, head of the neuro-oncology branch there through 2012.  Anyway, hope you get some answers.  God bless,  Sally

      May 25, 2017 view post
      • loveiseternal has replied to a post on the message board

        So sorry.  I haven't posted in here in awhile as my husband died almost 5 years ago.  But the end was so hard and not peaceful............. I hope you are comforted by the fact that you are being a terrific mother to her, there for her in her suffering and pain.  Like Mary at the foot of the cross. Prayers for strength and peace,  Sally

        April 28, 2017 view post
        • loveiseternal has replied to a post on the message board

          I am so sorry. I lost my husband, not my dad, but felt the same enormous heartbreak. I used to regularly write in my journal ' my heart is broken beyond repair'. I used to refer to it more as heart shatter than heart break. My husband died in June 2012. I have healed some as you will. Be kind and patient with yourself and surround yourself with people you love and trust. Your dad is no longer suffering but your hea...

          October 15, 2016 view post
          • loveiseternal has replied to a post on the message board

            Hi there. If I were you, I wouldn't share a bathroom with him. When my husband was on Temodar, I was being careful (although I was not pregnant). However, I developed nausea and a metallic taste in my mouth. I started using the kids bathroom all the time and I felt better. When I mentioned this to the nurses, they thought I was crazy, but I know that I'm not! God bless you going through all this and pregnant too, Sal...

            May 24, 2016 view post
            • loveiseternal has replied to a post on the message board

              Hi there.  So sorry that you and your wife are on this road (or in this tunnel).  My husband did the standard chemo/rad after his resection.  However, he also participated in three clinical trials, one during the radiation and two after recurrence.  See my profile for the details.  He made it about 27 months--20 months of treatment and 7 months in hospice.  I can't say in hindsight th...

              May 12, 2016 view post
              • loveiseternal has replied to a post on the message board

                As hard as things are for you, with all of the uncertainty, I would be glad that the tumor is not showing the hallmark features of a GBM.  After my husband's resection, the neurosurgeon told me that there was "considerable necrosis and vascular proliferation", etc...  I was so naive that I didn't realize that he was telling me that he knew it was a GBM even before pathology results.  He even added "......

                February 26, 2016 view post
                • loveiseternal has replied to a post on the message board

                  Dr. Fine was my husband's neuro-oncologist at the NIH. He is the best. I hope you find out more about the tumor and how to treat it. God bless!

                  February 21, 2016 view post
                  • loveiseternal has replied to a post on the message board

                    Oh my!  I read this and it brings back such memories.  The first year after diagnosis, my husband blew up at me and the kids in ways he had never done before.  Yes, he was on Keppra and temodar, etc...  But he was also processing the diagnosis.  I remember having the same feelings of despair you describe. The second year was worse in some ways--recurrence, clinical trials, watching him suff...

                    September 29, 2015 view post
                    • loveiseternal has created a new message board discussion

                      Hello all.  I just wanted to bring this brand new article to everyone's attention: http://www.sciencedaily.com/releases/2015/09/150924142514.htm I will add that anecdotally, my husband was on blood thinners, and though not continuous anti-depressants, he was on alot of ativan and haldol during his hospice period.  His tumor grew like crazy on treatment, but he survived 7 months in hospice.  When they...

                      September 25, 2015 view discussion
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                      About loveiseternal

                      Caregiver
                      Brain Cancer
                      Clinical Trials and Research

                      My husband was diagnosed with GBM IV in March 2010. This is a picture of him on Father's Day 2010 with our two beautiful sons. He was perfectly healthy and had just finished an hour run on the treadmill when I found him on the floor of our living room. I didn't realize it at the time but he was having a grand mal seizure. He was taken by ambulance to the hospital. After many tests, mostly to rule out a heart attack or stroke, they did an MRI of his head and found the brain tumor. He had surgery on March 16th to remove the tumor and we got the terrible news of GBM IV on March 26th. He entered an NIH clinical trial where he did the standard 6 weeks of chemo/radation but with the addition of valproic acid, an anti-seizure drug. He finished that in early June 2010. He was on 10 months of maintenance temodar before recurrence in April 2011. Those 10 months were rough as he struggled with fatigue and nausea with the side effects building with each cycle. The recurrence is in the posterior right temporal lobe--inoperable and too close to the brainstem for cyberknife. He did a high-dose tamoxifin/velcade clinical trial at NIH but failed it after only one cycle (6 weeks). His tumor grew by 40 percent during that period. After a 2-3 week break, he will enter another clinical trial at NIH--carboplatin/zactima. Update July 2011--failed carboplatin after only one cycle (4 weeks)--tumor continuing to grow. Now on Zactima. August 2011--developed a massive bloodclot in his right leg, on Lovenox. Zactima did stabilize the tumor so on it for another 4-week cycle. His quality of life is really beginning to decline. Update Oct 2011 - Zactima failed and now he is on Avastin. Poor quality of life. Has developed leptomeningeal disease--cancer cells in the CSF fluid. Updated November 2011--Avastin failed and now stopping all treatment. We just started hospice and they seem wonderful. Update May 2, 2012 - Still here despite stopping all treatment almost 6 months ago. Quality of life is really declining--morphine, oxygen, etc... He is still not bedridden but sleeps most of the day and battles daily headaches. Update May 21, 2012, the hospice doctor thinks that he has multiple PEs (pulmonary embolisms) now. Randy has stopped taking his Lovenox and does not want to start back up so the PEs are going untreated. Hoping for a peaceful passing. Updated July 4th, 2012--Randy passed away on June 20th. It was not as peaceful as I was hoping but it was what it was. Thank God I got him to the finish line. Thank God that his suffering has ended. For anyone reading this, thank you for your interest.

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