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nikki1128's Recent CancerCompass Activity

  • nikki1128 has replied to a post on the message board

    Hi, I have done the study with E&)*) for about 1 yeat... but got taken off due to a regrowth.

    January 31, 2013 view post
    • nikki1128 has replied to a post on the message board

      Avastin with cpt-11 is a joke... the cpt 11 only makes yoy even more sick... yes, i have taken this... and had too "hug the toilett way too often)   MY Neurologist told mt that the cpt-11 does nothing for the cancer...  I have stage 4 GBM and have been fighting this for the last 6 and a half years.... please read my profile, hope this helps... sincerely, Nikki

      January 02, 2013 view post
      • nikki1128 has replied to a post on the message board

        Please have them stop the cpt-11!!!!   it does NOT do anything but make you even more sick.  I go to Moffitt cancer center and spoke to my neuro oncologist about it, when I was taking avastin and cpt-11.

        September 20, 2012 view post
        • nikki1128 has replied to a post on the message board

          Please have them stop the cpt-11!!!!   it does NOT do anything but make you even more sick.  I go to Moffitt cancer center and spoke to my neuro oncologist about it, when I was taking avastin and cpt-11.

          September 20, 2012 view post
          • nikki1128 has replied to a post on the message board

            use Lotion... and when you massage your head, it stimulates hair growth

            April 15, 2012 view post
            • nikki1128 has replied to a post on the message board

              I have stage 4 GBM diagnosed in 2006.... ... i went through surgeries... avastin radiation also avastin and cpt-11... however, this cancer is very agressive. and after regrowth  had my last surgery 2011... I entered myself into a clinical study at Moffitt Cancer center in Tampa Florida and I am taking " E 7080" so far so good.  Hope this helps  -Nikki_

              April 11, 2012 view post
              • nikki1128 has replied to a post on the message board

                Please talk to the doctor about cpt 11... , I was on avastin and cpt 11 and it was horrible.  My Neurologist at Moffitt Tampa FL told me that cpt 11 did not prove to help, just made people even more sick...chemo is  tough enough, the addition of cpt11 just makes it worse... i was hugging the toilet all day, lost a lot of weight and shot my immune system,  I do not wish this on anyone!!!  ---Nikki-...

                February 05, 2012 view post
                • nikki1128 has changed their profile photo
                  January 29, 2012
                  • nikki1128 has replied to a post on the message board

                    After my last surgery in march, i started E7080... i get MRI's every 2 months... all have came out clear ant they have  also have shown that some scar tissue has disolved... the side effects are pretty mild in comparison to Avastin, CPT 11 and radiation ... i wont lie, still sucks feeling like crap but it does beat hugging the porvelain thrown.

                    November 28, 2011 view post
                    • nikki1128 has replied to a post on the message board

                      the addition of cpt-11 to avastin  is bull poo!! all it does is make you even more sick. I was hugging the toilett every day and dropped a lot of weight...my immune system was shot and i was not able to get out of bed unless i had to hug the toilett.. my Neuro Oncologist at Moffitt told me that the cpt-11 does not do anything to help the cancer cells from regrowing ...   Iwent through avastin and cpt-11 f...

                      November 23, 2011 view post
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                      About nikki1128

                      Survivor, Patient
                      Brain Cancer
                      Radiation, Recipes, Side Effects, Supplements, Support, Surgery, Lifestyle

                      I was diagnosed with a brain tumor in June 2006, I was 22 years old single mother of a 2 1/2 year old, after having a grand mal seizure, I was told that I had a brain tumor that needed to be removed immediately... I Flew to Boston to the Dana Farber Cancer institute with my 2 1/2 year old son and boy friend ... The surgery was successful... they were able to remove 95% of the tumor that was as big as a twix candy bar. The biopsy report was scary, turned out it was a stage 4 malignant glioblastoma multiforme ... I was told that i had 3 years to live...
                      I've been through a lot these past 6 and a half years, BUT I AM STILL HERE !!!!
                      After surgery i was put on chemo called Temodar and avastin along with radiation... it made me feel so horrible but it was worth it, about a year later... the rest to the tumor shrank, and i was in remission for 18 months and started temodar and CPT 11... however this aggressive cancer regrew with chemo so I needed a second craniotomy March 4, 2011 and was able to have 100% removed.... then entered myself into a Clinical trial... study that doesn't even have a name yet but it is called "E7080" My tumor has not grown since i started treatment. I get regular MRI's every 2 months. So far, all is clear, also some scar tissue has dissolved. meds still have a side effect but life is worth it! I have a smart little man and a hubby that need me.
                      I will beat this!! Unfortunately, my trial with the E7080 ended in September 2012 due to a regrowth... I started a new trial in October called BKM120 taken daily along with IV avastin once every other week ...
                      as of 3-29-13... I stped the BKM120.. because MRI showed another regrowth... very small, but enough to kick me off the study....

                      With a thirst for life I continue to do my best taking care of my family and dealing with all of this crap.

                      Starting another study "D.A.G" on $-17-13... it will be Intravenous 3 consecutive days every 3 weeks...I was told that the first 2 days will take 6 hours... another study failed tumor still growing...only finished 2 and 1/2 rounds. back on Avastin and CPT 11.. kicked off more chemo... not knowing what to do nest, they started me on chemo for leukemia and lymphoma ... Dr's told me it is either this or nothing...seriously think i'm going to choose to do nothing??? ha


                      With faith, prayer,and a positive attitude I continue fighting this horrible disease... I WILL NEVER GIVE UP!!! my faith is in God's hands... and I am still here and fighting!!!

                      Yesterday is history,
                      Tomorrow is a mystery, but today is a gift. That is why it is called the present.

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