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Jenholm25's Recent CancerCompass Activity

  • Jenholm25 has created a new message board discussion

    There are several states out there that do not currently have any support groups in their state.  I have created state support groups on Facebook for those states.  There were 16 states without support groups already established.  My hope is, that 1. Those states that already have support groups, they will create their own FB page, 2. The patients in the states that don't have any support groups availa...

    November 15, 2013 view discussion
    • Jenholm25 has replied to a post on the message board

      We'll go ahead with treatment and keep an eye on both the sarcoidosis and the carcinoid cancer.  i'm not sure yet how long i'll be on the meds.  Yep, a lot will depend on how I respond to it, if it helps stop the sarcoidosis or slow it down, and if my carcinoid gains speed.  It also opens up the door for other opportunistic diseases.  I'll probably start wearing masks in public and around groups.

      April 05, 2013 view post
      • Jenholm25 has replied to a post on the message board

        Hi Kelly, Make sure you're getting an octreoscan once a year.  I still recommend those over a CT scan. I'm one of the people who always has normal 5-HIAA and CgA levels. No problem with rashes.  I'm also one of the rare ones who has Sarcoidosis (an-autoimmune disease where the body attacks itself) and that has caused Pulmonary Fibrosis.  It was found via PET scan and biopsies. I don't know if thi...

        April 02, 2013 view post
        • Jenholm25 has created a new message board discussion

          So... we're finding ourselves in kind of a catch-22... The medications that I need to take to treat my Sarcoidosis will bring my immune system down. I take an anti-rejection drug that is usually used on transplant patients so the body doesn't attack the new organ. It's being used on me so that my body doesn't attack itself. And the chemos that work on Sarcoidosis do not work on Carcinoid cancer. The problem is... the...

          April 02, 2013 view discussion
          • Jenholm25 has created a new message board discussion

            I was just diagnosed today by Mayo Clinic... Advanced Progressive Multi-system Sarcoidosis. It's an autoimmune system disorder (Multiple Sclerosis is another type of autoimmune disorder) where the body attacks itself. Because previous attempts at steroids have not helped, there is discussion of putting me on chemo. Some of the meds they are discussing are CellCept, Rituxan, and maybe Kineret.  This is in additio...

            March 21, 2013 view discussion
            • Jenholm25 has replied to a post on the message board

              Hi Maryann, I hope they are able to figure it out for you soon!  The chills at night and the lo grade fevers aren't typically part of carcinoid.  (Remember, what I have going on right now is separate from and in addition to carcinoid.)  But the flushing and diarrhea sure sounds like it. No, I didn't go over for the PRRT treatment.  The GA-68 scan showed that all of the tumors that showed up on t...

              March 11, 2013 view post
              • Jenholm25 has replied to a post on the message board

                My Symptoms:1. Upper abdominal pain - liver, spleen and the area right between the 22. Mid back pain3. Nausea and some vomiting4. Soaking wet night sweats, shaking, chills, fever5. Daily fevers 99-101 – Fevers of Unknown Origin6. Night sweats that don’t stop when I wake up - with shaking, chills, and fevers7. Flu-like feeling all of the time8. Bowel movements at night9. All over itchy skin – especia...

                March 11, 2013 view post
                • Jenholm25 has replied to a post on the message board

                  Hi All!  Sorry to keep you hanging.  Well kids, things aren't looking good... The PET scan showed wide-spread disease. Whatever this is - and we're down to Sarcoidosis (an autoimmune disease) or Lymphoma, has spread even more. It's in my chest, new spots in my lungs, 4-5 new spots in my liver and spleen, L2 and L3 plus several thoracic vertebrae and tail bone, left hip, right shoulder and rt shoulder blade...

                  March 11, 2013 view post
                  • Jenholm25 has replied to a post on the message board

                    p.s.  I had a ton of sudden weight gain with this too.  They've never really been able to figure it out.  But it seems like people with carcinoid either lose a lot of weight or gain a lot of weight.

                    November 27, 2012 view post
                    • Jenholm25 has replied to a post on the message board

                      I do not recommend going to Mayo for this kind of cancer.  I did early on, after my initial surgery.  They told me I was cured.  2 1/2 yrs later, I have carcinoid spots in my liver. I HIGHLY recpmmend going tocarcinoid.organd finding a specialist and going there.  They will know what to do for you. Keep us posted! Jen H

                      November 27, 2012 view post
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                      About Jenholm25

                      Patient
                      Other Cancer
                      Cancer Diagnosis, Cancer Treatments, Emotional Support, Side Effects

                      41 yrs old. Diagnosed with stage 4 carcinoid cancer in Feb. 2010 with carcinoid syndrome, and early stages of carcinoid heart disease. Currently I have multiple mets to my liver. I also have a systemic infection I'm fighting. My husband was diagnosed Oct 2011 with surface melanoma. I am NOT interested in "alternative" ideas.

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