Tuesday, February 2, 2010
Belinostat so far
So, my scan showed that my tumor had actually shrunk since my last treatment before starting Belinostat, and was still stable and just on my adrenal gland. The Belinostat has been really hard on my GI tract, vomiting, nausea, and tons of diarrhea. Lomotil and Immodium has no effect, so Im just trying to keep some moistness in my body. I feel like crap, and hope this gets better. I may have to have a dose reduction, as now Im taking 2000mg. But hopefully the side effects are just my body reacting to the drug. I was warned before starting this drug that I was be the pooping princess. So no more scans til March to see how the drug is working. So thats all I have right now!
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6 comments:
hang in there! i'm sorry this treatment comes with such discomfort. keep your thoughts to the future and being done with that drug and the cancer nightmare for good! i love you so much, i want to actually *meet* you some day. maybe even visit africa with you. =) if there is anything i can do to help, please let me know! in the mean time know that i'm sending love to you and prayers to God for your cure!
Dear Kara Denmark 4/2 2010
Best whishes from here. I´m surpriced of the sideeffects of Belinostat you mention. Here follows a short reference about the mentioned drug from an american trade/forum:
Spectrum Pharmaceuticals Licenses Belinostat, a Novel Anticancer Drug in a Pivotal Registrational Trial
"So far, Belinostat has demonstrated some unique and differentiating attributes. ".
Further about belinostat :
--Granted Fast Track and Orphan Drug Designation by FDA
--Multiple Phase 2 Trials Are Being Pursued In Various Oncology Indications Including Carcinoma Of Unknown Primary (CUP) For Which No Drug Has Yet Been Approved
--National Cancer Institute (NCI) is Conducting Multiple Trials With Belinostat
--More Than 700 Patients Have Been Treated With Belinostat
The entire article: http://www.tradingmarkets.com/news/press-release/sppi_sppi_spectrum-pharmaceuticals-licenses-belinostat-a-novel-anticancer-drug-in-a-pivotal-registrational-tr-744900.html
Kara
We are a few in Scandinavia who learned about your case, and we follow you, and hopes for you, as for instance the inventors and manufacturer of Belinostat Topo Target Copenhagen.
All the best to you, your small child and your family.
Be patient and confident. I am sure you will regain your health.
Love and best regards
Arne Jorgensen
Hi Kara, was so pleased to find your blog. I am a relapsed large T-cell lymphoma survivor from beautiful Cape Town. I received 6 treatments of CHOP last year and was clear for a whole 2 months! I am about to start on the trials of Belinostat here in South Africa (to the best of my knowledge the
1st in SA) and it would be great to be able to compare notes and progress with you. Stay strong and will keep you in my prayers.
Hi Kara
Best wishes for you, do not let the
sideeffects get you down, there is no
effect, without sideeffects, this is
true for all drugs.
There is info about belinostat at
www.belinostat.eu
Although it is an new and experimental
drug, it is already being investigated
a lot.
Best Wishes
Palniz
Hang in there, sorry to hear you aren't feeling well. :( I work for ChiliTechnology and I wanted to share a resource - when my daughter was going through chemo she used to get a lot of heat - sometimes chills too. It would keep her up at night. I was lucky to have access to a ChiliPad: ChiliPad which is a mattress pad that lets you set the temperature of your bed from 46 - 118 degrees. It was a great relief for my daughter, having a safe and comfortable place to rest. I think they should introduce these in hospitals. I thought it might help someone out there who is fighting cancer, or has a child who is.
Kara,
You are very brave to go through that treatment. I wish the best results for your health. Hang in there.
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