this blog is always a resource of information, I need to say thank you all.
I am Simone, my sister Lorena has a brain tumor since 2010.
All our story started with a first removal operation for fibril astrocytoma with wide signs of anaplasia, after a first treatment of radiotherapy the situation seamed to be under control.
In the July of 2014 a second relapse tumor appear, she undergone on a second removal operation defined completed of anaplastic astrocytoma. Lorena complains hypoaesthesia at the left hemisphere, at the hand. She began Chemiotherapy with Temozolomide. The molecular analysis shows the IDH1 mutation on the operation area – MGMT not methylate.
The brain Magnetic
resonance of August 2015 with contrast shows a round area that has a contrast at the precuneus level, moreover three tiny area of white substance on the
subcortex region. Suspention of Chemiotherapy after 10 cycles of Temozolomide and start with PCV therapy.
From 2015.11.11 to 2015.11.23 radiosurgery on the enhancement areas in the right occipital parietal area. 24Gy in 3 fractions. Isodose 82%
Here you will find an extract of her medical history of the last few months:
EMERGENCY DEPARTMENT 2015.11.16Partial sensory crisis left
hemisphere and headaches in therapy with Keppra and Soldesam
DOTT.SSA MILANESI VISIT
2016.01.15Toxicity caused by radiosurgery
that has to be controlled after cortisone.Magnetic resonance between two
months. FIRST AID 2016-03-08Important Nausea and headache.Undergone on a control CATscan without
Contrast and Blood ExamCAT
medical report“Determined disease progression with
hypodensities meaning edemigeno-infiltrating affecting the right
parietal-temporal-nuclear region with extension to the splenius of the corpus
callosum and the capsule system.Collabimento
the right lateral ventricle and shift to the left of the center line of about
11mm”Recommended Steroids Decadron 4 mg x
2 MRI 2016.03.09There is an additional significant progression of neoplastic lesion known, in the
right parietal occipital. It shows signs of spreading peri axonal along the perivascular spaces of virchow-robin
and periependimale. Marcato is also the involvement of the splenius of the
corpus callosum.Coexists edema vasogeninco enhancement resulting in higher compressive
effect on the ventricular complex. 2016.03.14Start of MANNITOLO 100
CC three times a day by injection in addition of DESAMETASONE 8 mg three times a day
MRI 2016.04.10There is an additional significant progression of neoplastic lesion known, in the
right parietal occipital.
The edema was treated with mannitol and cortisone, which has not reacted as hoped the doctors.
Do you have tips for us? What more can we do?
Thank you in advance, good luck to everyone..
Best
Simone
Simone - I am so sorry for your sister. I have a sister too and would be devastated if she was sick. My dad has GBM which is also heartbreaking.
ReplyDeleteI'm not the smartest one on here but since you are seeking urgent help I thought I would try and chime in. Have the doctors tried dexamethasone for the swelling? My father had severe swelling twice in our journey which caused rapid declines both times. This was during radiation and again a short time after. Dad was given I believe 10mg of dexamethasone via IV and we were told if it didn't help in 24 hours there was nothing that could be done. Fortunately it did help ease his symptoms almost exactly 24 hours later. Following that incident we raised his daily dose from 4mg twice day to I believe 8mg twice daily. He stayed at this level for months.
That may help you with the swelling.
Love to you. xoxoxo
Annie
I should clarify, the 10mg dose was a 'one time' then we upped his daily dosage the next day and ongoing.
DeleteYes, dexamethasone "steroids" is also what my husband's neuro-onc prescribed for inflammation, swelling, especially post surgery. Greg is now is on a 2mg 2 x a day maintenance, along with curcumin, etc. It looks like she is already taking Soldesam is also a steroid, so I'm not sure what to suggest.
DeleteI'm very sorry to hear your sister's situation has become so urgent Simone.
ReplyDeletePerhaps it would be worth considering thalidomide at this point. There was a study published by a German clinic that treated advanced GBM patients with thalidomide, palliatively as a way to deal with some of the syptoms of the disease. However, what they actually found was that patients with secondary GBM (your sister's tumor would be a secondary GBM) had longer than expected survival when treated with thalidomide.
You can find this study in the Brain Tumor Library, Folder 1 (Human studies), Thalidomide subfolder. You could show this study to your sister's oncologists.
Here is an excerpt from the study:
" Given the high effectivity as a sedative without a hangover effect providing relief from insomnia and nausea as well as the immunomodulatory, anti-pyretic, anti-cachectic, anti-angiogenic and analgesic effects matching the therapeutic needs of palliative care medicine, we introduced TH [thalidomide] in the care of patients with relapsed, advanced gliomas more than 10 years ago and used it as the ‘last therapeutic option’ when all other options had been exhausted in more than 100 patients. Re-evaluating this practice, we noticed that patients with a histological diagnosis of secondary glioblastoma (GBM) survived for prolonged periods after having been treated with TH."
Hi Simone. My husband is in a similar situation as your sister. He is presently in palliative care set up at home. He is on 8mg Dexamethasone twice a day. He has been battling GBM for 2 years with 4 ressections, lots of supplements, almost-ketogenic diet and the GBM still kept coming back. He now takes cannabis oil to help sleep at night because the Dexamethasone keeps him agitated. He is paralyzed on the left side. My email address is petruzzo@hotmail.com. SE sei italiano possiamo anche communicare in italiano. Sono italo-canadese.
ReplyDeleteIs Avastin worth a try? It worked wonders for my husband when 16mg dex daily didn't help.
ReplyDeleteHi Simone. My husband is in a similar situation as your sister. He is presently in palliative care set up at home. He is on 8mg Dexamethasone twice a day. He has been battling GBM for 2 years with 4 ressections, lots of supplements, almost-ketogenic diet and the GBM still kept coming back. He now takes cannabis oil to help sleep at night because the Dexamethasone keeps him agitated. He is paralyzed on the left side. My email address is petruzzo@hotmail.com. SE sei italiano possiamo anche communicare in italiano. Sono italo-canadese.
ReplyDelete
ReplyDelete“My name is Patricia and I am a healthy and active 52 year old female. In March of 2013, I was diagnosed with an intramedulary spinal tumor at L1. In June of 2013, 40% of the tumor was removed by UCSF and was biopsied as a Grade 1 Astrocytoma and I was prescribed 37 rounds of radiation. By August of 2013, the tumor had not only completely grown back, but had increased in size…about 3 centimeters tall and over a centimeter wide. At this point, it was pushing on the spinal cord enough that I was losing function of bowel, bladder, and especially, right leg. USCF admitted me as an emergency and they excised the entire tumor, which then biopsied as a Grade 4 Glioblastoma. More radiation ensued and almost a year of Temodar. Just over a year later, in October of 2014, it was discovered that the Glioblastoma had returned in its entirety and was once again taking away my function. In November of 2014, I went through 10 massive radiation treatments. In conjunction with what was said to be extreme and unconventional radiation, I also started a regimen of [Constance’s] Cannabis Oil. Slowly, I built my tolerance until I hit the full dose. I followed the regimen for 3 months starting in November of 2014 and finished in January of 2015. In December of 2014, I also started Avistan and CCNU as my chemo. In March of 2015, the MRI’s showed a significant reduction in the size of the tumor. Both my oncologist and my radiologist seemed both impressed and excited at such significant results which leads me to believe they didn’t expect such a drastic change in my status.” i am so happy for sharing this testimony,my advice to you people that think that their is no cure for cancer,just contact and get the oil treatment from Rick Simpson try it and you will not regret it because it truly works and here is his email(ricksimpsoncancercure82@gmail.com) Thanks and God bless you?
The above testimonial was lifted from constancetherapeutics.com, with the name switched from Becky to Patricia.
Deletehttp://constancetherapeutics.com/about/testimonials.html
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