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

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8/8/2010 9:27am
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Replies: 15

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,

  I do not have experience with the med you are on but keep eating well, and doing all you can to maintain otherwise good health.....many people on this board are LIVING with stage 4 melanoma!!!!

Hugs from the USA,

Vermont_Donna

stage 3a

Hi Simone,

  I do not have experience with the med you are on but keep eating well, and doing all you can to maintain otherwise good health.....many people on this board are LIVING with stage 4 melanoma!!!!

Hugs from the USA,

Vermont_Donna

stage 3a

I do not have experience with the drug you are taking but wanted to let you know that you are not alone anymore, you have found a family of people who are walking in your shoes as we speak and we care about you and what you are going though. I dont know what the best treatment would be for you. This is one of the hardest parts of the fight is choosing which treatment is best. You can research here and I suggest you do, educated yourself as much as possible. I am Stage IV and have been to hell and back but I am stil here. Please stay with us. We really do care and someone with your drug experience should post soon but weekends are kinda slow sometimes. There is always hope.

 Love, Sharon in Reno Stage IV

To Thy Own Self Be True & Move Fast When You "Know" You Have To!!

 

What about IL-2, Simone?  There are people on the board who have had good results with it.  A recent post discussed a relatively new treatment for liver mets, too.

The weekends are kinda slow on the board, but I'm sure others with more knowledge than I have will respond.

Keeping you in my thoughts and prayers.  

Hi Simone,

 

Sorry you are here on this board with us. Different treatments work for different people. My husband did IL-2 then surgery to resect the rest. He has been disease free hopefully a year next week. If you are young and healthy is IL-2 or IPI available to you?  These are treatments you may want to consider.

Good luck and know you are not alone. We are all fighting together.

Believe

Sorry you joined us in the Stage IV club.

I would wait until the scans because you actually may be one of the few responders to DTIC.  I looked at that trial and declined it becuase to me, IL-2 would have been a better "placebo" or control arm.  It wasn't because it would probably be too difficult to get approval comparing a drug to an immunotherapy versus a drug to drug comparison.

Just stick with it until you have more information, you can always opt out later or try high dose IL-2.  I did the IL-2 and was a complete responder.  I had minimal disease, a slow progression, and only one mass left in my chest muscle which was small.  In addition, I have been developing delayed T-cell mediated allergies.  I think all those factors, plus an immune system looking for something to go after (other than myself) is why I was lucky enough to join the 6% club.

I was stage IIA in 2002, and became stage IV in 2009.  VATS lung surgery Feb. this year and also BRAF pos.  I chose high dose IL-2 for the above reasons in addition to the fact it still is the only drug that can give me a small chance for a durable remission ex. decades!  DTIC has a few as well but the complete responders tend to recur more often than the complete responders to IL-2.  (6% CR with IL-2, of which 60% are still alive and setting the median survival.  One person is out 22 years without a recurrence!).  It is tough but doable.  It only takes a short period of time to go through treatment as well vs. several cycles of chemo.  IL-2 either works or it dosen't.  BRAF inhibitors must be taken continuously and so far don't cross the blood brain barrier.  It will be my back-up plan if I recur, or more IL-2....

Best of luck, glad you seem to be responding.  Wait until you have your info first before making any decisions.  Scanxiety is normal, sucks, but will get better with time.... lots of time....

Cyberhugs,

Kim (42 and single mom of 2 girls - aged 2 & 5).  I am in Hawaii.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Hello Simone...I'm so sorry to hear that you have progressed to stage IV.  It is very difficult to tell whether dacarbazine will work for you, it does for some and you jmight be a fortunate responder...you are young and it just might be the solution for you!! I would recommend a back-up plan though. Dacarbazine is considered a stage IV drug...would it be possible to ask your doctors that if you do have progression on this trial IF you can come off of it and perhaps try something else.  Ipilimumab or perhaps IL-2.  Ipi is showing quite a bit of promise and there is a trial that seems to be gaining in the States and Canada called the 'compassionate ipilimumab trial', I'd be very surprised if it hasn't arrived or is coming soon to Australia.  What I do like about it (and odds are that is my next step since temodar appears not to be working) is that it has only one arm...iplimumab THAT is what you would get!  Qualification is that you must have had a stage IV drug and show progression, dacarbazine would qualify..so that is good news, speak to your doctors about this.  Some centres likes M.D. Anderson in Texas have trials that are also combining ipi and temodar. Stay strong and explore avenues for options. Thinking of you, Val, stage iv

Live Laugh Love
Nothing is worth more than this day!

Hi Simone

Where are you being treated? Others have suggested IL2 but as far as i know not many places will do it here in Oz as we do not have the depth of facilities in terms of specialised staff, ICU set up compared to the US. I would think and this is my view only that Dacarbazine is the old style treatment and i would get into a BRAF Trial. Look for old posts from Tina she is Tony's wife who has been stable on BRAF for over a year. Ipilimumab is another one that you should look into. Having said that there are people on this Board who have had success with Dacarbazine. Is there an option with surgery?

Melanoma is one of the most Immune responsive Cancers so if you can rev your Immune system up then you will see results. You have been doing a good job by yourself holding this disease at bay for 5 years, this to me means your own body has and will continue to attack the Melanoma cells.

Email me if you need some names in Sydney for another opinion.

best wishes

James

Hi Simone

i forgot to say that Tina is from Melbourne.

cheers

James

Initially 5 years ago, i was treated at The Alfred Melanoma unit in Melbourne.  After being diagnosed Stage IIc, with extremely high risk of recurrence and about 44% chance survival 5 years, they sent me away and told me to see a Derm every 3-6 months.  No scans, no SNB, no nothing! 

I went away, did my own research and found out how serious this really was, found this board, and eventually got onto a Melanoma Oncologist in Melbourne called Dr Phillip Parente (recommended by a lady Alison on here).  I have seen him privately over past 3.5 years, developed a good relationship and trust with him, and have always felt very confident in his decisions regarding my treatment.  He works at The Box Hill Hospital (thats where Im receiving chemo) and doing all blood, scans, etc.  and also seeing him regularly in his suites for check ups etc.

I dont think you understood my message properly, or moreso my message probably didnt make sense!!   I am on the current BRAF Trial, PROBLEM IS I ended up on the Dacarbazine arm unfortunately :-(   so there is NO WAY of me getting hold of that new drug R05185426, until the Trial ends and it is released.  Because i have stayed on the trial and am following the requirements of it (extra blood tests, questionaires, etc etc) when the trial ends, I will be given the drug first and free of charge on 'compassionate grounds'.   Only problem, no one knows how long away that is???   I MUST STAY HEALTHY till then!   Also, just cos ive started on the trial, it doesnt mean i am stuck on the Dacarbazine (only committed to first 2 rounds i think).  After first scan, if there is evidence of further spread, then i am off it immediately and my doctor has mentioned that he'd probably start me on Fotemustine. I am reassured that this definately will not wreck my chance of receiving  the R05185426 when the trial ends.

I would really appreciate some info on other Melanoma Specialists all over Australia (even world wide) If being in Melbourne (or Australia even), limits my choices of treatments available, then I am prepared to move anywhere. 

Thank you so much James for taking the time to write to me, I feel a little better this morning knowing that Im NOT alone in this, there are so many of us going thru this challenging scary journey.  I think ive found myself another special family :-)  Simmy xox

Other than the one you pick, there is no one best treatment for melanoma for you.

However the science, however the doctor, however the research, the decision is yours because it is your chance and therefore your choice based upon your own  judgement.

There are many success stories here and some not so, but do not feel alone as if your mind is twisting in the wind.......................rather feel the breeze because there are many like you here

Charlie S

Hi Simone,

It is good to identify other options you may have before getting your scans so you have a roadmap, or at least potential options.  There are others of us who have been through a similar decisionprocess who may be able to offer some ideas.  In the last few months I have had to make decisions not unlike yours.  BRAF treatment is the subject of much interest in pharmaceutical oncology lately, as you know.  I tested negative for it, so it was not an option for me.  I became aware in my own reseach that GSK (Glaxo SmithKline) is developing a BRAF inhibitor, so Roche is not the only option in that area. Whether the GSK Inhibitor is undergoing a Trial in Oz and/or near you might be worth investigating - it looks like GSK2118436 is the particular drug.  It is undergoing a Phase I Study here in the States combined with their MEK Inhibitor - for more information, go to:

http://clinicaltrials.gov/ct2/show/NCT01072175

I read one of the posters here recently soliciting feedback on whether to pursue a BRAF Inhibitor (she has the "e" type and is eligible for trials) or Ipimimulab.  The ideas was that the BRAF Inhibitor shows good short term results, but not necessarily long term.  You would have to do your own research on that point and make your own judgement.  Her thought was that Ipi migh provide better long term results, though not necessarily short term - again, do you own research. 

However all that may be, you seem to want to figure out a Plan B and maybe Plan C.  I like that approach myself :)  It is hard to be rational when you are feeling alone and frightened.  I know how that feels, although I hardly ever allow myself to go there (a guy thing I suppose).  I just try to live each day as best I can and focus on the positive things in my life - of which there are many.  I used to be a more negative person before all this - I now feel differently about many things.  Then again I am entering geezer territory, so it may just be an addled brain...lol.

For what is is worth, the only option I had locally was Abraxane vs Dacarbazine (a trial) or IL2.  I decided to go elsewhere to see if I had other options and ended up at MD Anderson Cancer Clinic in Houston, TX.  It is about a 2 hour flight for me, so it is not difficult travel.  Anyway, they have a study that combines Ipi with Temador (oral chemotherapy) in which I am enrolled and just started last week.  Anyway, I think Ipi is a good choice, and would put it on your list to consider.  There is too much hype around it right now, but it is promising and offers potentially good results.  IL2 would be one to put on your list as well, I would think.

Anyway, best wishes to you from Colorado USA.

Jim in Denver

 

 

 

Hi Simone

the nearest specialist Melanoma person to you is Grant Macarthur at Peter Mac. in Melbourne. In Sydney the leading place is The Melanoma Institute of Australia you can email them go to melanoma.org.au or call 99117200.  The top guy there is Prof Rick Kefford. Yes as others have said believe in your choice and go for it but its also good to get other opinions which help you make an informed opinion in the event you need to go in another direction later.

best wishes

James

Simone,

What your feeling is natural.  While many have given you advice on treatment possibilities they are also reaching out to let you know your not alone.  We've all been frightened at some point on this journey.

While I can't give you suggestions on treatment I do agree with other posters that you have to have a plan inplace incase the DTIC does not work.  Continue on what your doing but also make an appointment with another Dr. at the same time and get his options.  If you willing to travel look into arrangements now so it would only be a simple phone call to activate your next plan of action.   Everytime you get a scan, ask for a cd copy of it as well as the written report.  Organize now, to help you fight later!! 

Use the chat group when really feeling alone or pick a few people you can relate to and e-mail them. Someone will respond. It's amazing how much it helps to have someone be your e-mail confident through out all of this.

Wishing you the best,

Linda 

Stage IV NED 1 year (pending results of fna this afternoon)

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. There are other Melanoma oncologists you could see for a 2nd and 3rd opinion - Dr Ceebon and or Dr Davis at the Austin (they do their own trials as well so there may be something they are doing that interests you), Dr Ben Brady at Cabrini, Dr Grant McCarthar at Peter Mac - there are others however these are the ones my husband has seen and I can recommend. Many people have replied about IL2 unfortunately it is not available in Australia (drs do not beleive the benefits of this treatment outweigh the risks involved), nor is BioChemo for the same reasons. We do only have Chemo and the Clincial trials from my understanding and reading. A collegue of mine at work has a friend how was STAGE IV 5 years ago and did Fotomustine and has been cancer free for 5 years so far.... so you just never know what will work. It may be fate that you received Dacarbazine - you may be a responder.... The GSK BRAF trial in sydney that my husband is on is currently a phase I trial and hopefully phase II will be opening very shortly and I have read that there will be a Melbourne site so that is an option for you (with phase II you will receive the BRAF). If you need anymore info please email me. Tina