Newly diagnosed Stage IV, just started Dacarbazine - Im so lost & scared :-( I need some advice & encouragement please anyone??

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8/11/2010 5:12am
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Hi there everyone,

Thank you for taking the time to read my words and hopefully giving me some guidance.  I want to beat this horrible monster, I have so much to live for, and much determination, love and faith to rely upon....  Im just a little lost atm and wondering If I am being realistic in thinking I can beat this. 

My name is Simone, im 34, and live in Melbourne, Australia.  I was first diagnosed stage IIc in 2005 & remained NED until 6 weeks ago when I found a lump under my arm.  It was confirmed mel and scans showed many spots on my liver as well, making me a stage IV suddenly :-(  

I was immediately tested and found positive for the V600E BRAF Mutation and therefore went into the BRIM 3 Phase III Study for patients with this gene to receive R05185426 or Dacarbazine.  Obviously my oncologist, myself and my family were hoping and praying that I got the R05185426....  BUT unfortunately Ive ended up with the Dacarbazine.  I was shattered but had to pull myself together quickly to start chemo. 

Ive now had 2 rounds of chemo, have handled it very well, and the lump under my arm does feel to have shrunk, BUT I am just SOOO SCARED.  I am having a scan done in 2 weeks, and I am dreading it...  What if the results are worse?  Could I still beat this?  Apart from melanoma, I am in excellent health and fitness, and am eating well and exercising.  

I am wondering 'Is this the best treatment for me atm?', "Would i be receiving the same or better treatment options if i was in the US or Europe?'  "What have other patients tried who have been in my situation?'  "Any success stories with Dacarbazine? or other chemo?'

Please help me, Im feeling so alone and frightened :-(

Hi Simone,

Just want to say I have not had Dacarbazine, but have had the equivalent -- Temozolomide twice (2 lots of treatment for six months each time). It gave me over a year's remission the first time and contained my tumours the second time for a year.

Wishing you well, Janet 

Hi Simone,

Sorry to hear that you have become stage iv, but you need to stay positive.

I too live in Melbourne, my fiance (who passed away May this year) was diagnosed with Melanoma initally around 18 years ago (in the back), he was given the all clear. But unfortunately it came back again in same location 3 years ago, and he became stage iv. We managed to fight the disease for 3 years, through various trials in Australia. As hard as it may be at times you need to stay positive. People defy statisitics everyday. Please feel free to email me if you want to know more about the trials he was on (his last one was a B-Raf trial in Sydney - which kept disease stable for around 8 months) Also I suggest you get in touch with Melanoma Patients Australia, they are a Brisbane based melanoma support team, who run support group meetings in Melbourne on a monthly basis.

Regards

Elesha

 

Hi Simone, So sorry to hear about your progression. My Husband was Stage I for 14 years before he progressed to Stage IV in Sep 08 when he was 35 years old. Like you there was no stage II or III so we were shocked to say the least. We too live in Melbourne and unfortunately we do not have the same options available to us that the US have however we do have most of the promising clinical trials available. My husband has now been on the GSK (Glaxo Smith Klein) BRAF inhibitor for 13 months  - he travels back and forth to Sydney for this trial and it has keept him stable so far. This is the only treatment he has done other than radiation to the spine and lung and surgery. Like you he has a lot to live for - we have a 5 year old and 3 year old... and alot of hope and dreams. Where are you being treated and who is /are your oncologists. If you need any more info please email me. Tina