Advice needed treatment options stage 4

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8/14/2010 1:13am
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Replies: 23

Hi I am 36 and live in country Australia.

I was diagnosed in 2006 when my baby was 8 weeks old.

Had surgery in May 2006 to remove 3 large tumors from my adbo, along with 3 section of my small and large intestine.( the diesese was in the myestenty of my bowel) had more surgery in 2007 to remove 1 small tumor from beneath my kidney and i had then been clear for 3 years just having blood tests and CT scan every 3 - 6 months.

I had a recent positive scan in June after feeling a bit "off" and now have 2 main tumors in my abdo and many small nodes, they tried to surgically remove these but when they operated thought there was too much diesese to be able to completely remove it all, so did not want to put me though a huge operation and recovery. So they only removed one small easy to get to tumor.

They tested the tumor for the Braf mutation and found it to be negative which was very disappointing.

I have just started DTIC (or dacarbazine) and have finished the first cycle. they will rescan me with a ct after 3 cycles to see how it is going. Currently my belly is quite swollen and tender but generally feel ok.

If the DTIC  does not work they plan to give me Ippiliumabab in Melbourne.

I see a local oncologist in my home town of Albury and Prof Cebon ( Mel specialist in Melbourne). Being a country patient it makes it hard to get info on treatment options etc.

I am feeling quite desperate and wanted some advice on other options people have tried that I could also look at, that maybe I have not considered or been offered, and appreciated any info.

Thanks Liz 

Hi Liz

I don't have much to suggest regarding new options for stage IV (I've been an infrequent board visitor for the last year or so) but wanted to say that Jonathan Cebon is also my doctor and I honestly think he'd be suggesting the most likely/best treatments in Aus.  I'm suprised he hasn't suggested more immune based treatment (since that's what he mainly researches) but Ipilimumab is immune-system related so that may be where he is planning to go if the DTIC doesn't do it. 

Sorry not to have more to suggest - I'm sure other stage IVers will chime in - but wanted to say that after "shopping" around for doctors in Aus and in Melbourne (including the Sydney Melanoma Unit), I've found Jonathan Cebon to be the most dedicated and the most optimistic.  I hope he can find a treatment that will work for you and work quickly

 

Good luck

Alison C

Stage IIIB

NED since 2001

Hi there Alison,

My name is Simone, from Melbourne.  I'm not sure if you remember me but I contacted you probably about 4 years ago after being diagnosed at Stage IIc in 2005.  I initially had my WLE at The Alfred, where they did no x rays, scans, bloodwork, nothing!  After doing some research of my own and realising how serious my condition could be, I wrote about my concern on this board.  You replied to me, gave me lots of advice and we emailed each other a few times, sharing our stories.  You recommended I find Dr Phillip Parente, who you had seen, and go and tell him about my diagnosis.  I immediately got in contact with Dr Phil, and have been seeing him as my oncologist ever since. .  Do you remember me? 

Anyway, you may have read on here, that last July after just making my '5 year mark' I became a Stage IV  :-(   I found a lump under my arm, and scans showed that the cancer had already spread significantly throughout my liver.  My life changed overnight, as you can imagine....   Over the last 9 months, which have been hell, trying DTIC and IPI, and quite a few months with no treatment (only natural treatments and my own diet, lifestyle changes) the cancer continued to spread to my lungs, abdo, and brain.  I ended up in hospital in Jan, after bloating up very badly, being in horrific pain and hearing from Dr Phil that I didnt have much longer, and that I was not going to make the release of PLX4032, which I was to receive on 'compassionate grounds' as I was initially on the BRIM3 Trial (back in July), and had unluckily been allocated to the DTIC group.

I didnt believe what I was being told, and continued to have hope, faith, and remained positive and kept smiling (the traits that have got me thru the past 9 months)  AND MIRACULOUSLY while in the pallative care ward in The Royal Melbourne Hospital, I received a phonecall saying that the drug I had been waiting for, was there at Box Hill Hospital waiting for me to start taking the following morning!!  

9 weeks later, here I am at home, feeling pretty damn good!! (apart from a few side effects)  BUT the great news is.... the tumour in my brain has disappeared, and the other 'countless' tumours throughout my body have shrunk by an average of 70% !!!!!   and this was after first scan at 6 weeks!!   How lucky and blessed am I?? 

I thought I would tell you my story, as I believe that I owe you a 'thank you'.  Without your advice and help and encouragement all those years ago, when I was oblivious to how serious my condition was, I might not have got the regular medical check ups and treatment that I very importantly required.  So Thank you Alison....  I see that you are still often on this site, offering others your help and advice, thats so very kind of you, and im sure I speak on behalf of many other 'new, naive, scared sufferers' 

I was wondering if I could have your email again, as there is something else I would like to share with you.  If you want you can email me your address.   Mine is    gosimmy@hotmail.com

Hope you are well and happy and all is great in your world,

Simmy from Oz......    xoxo 

Simmy,

You are am amazing and strong woman! I hope this treatment knocks that melanoma right out of you for good!!! Stay strong!

Vermont_Donna, stage 3a

currently stable after 4 infusions of Ipi

What about IL-2?  I am now NED due to IL-2.  There are other inhibitors as well ex. MEK and I think NRAS.  IL-2 can provide a prolonged durable response.  Approx. 15% response rate and a 6% complete response rate.  If you are lucky to fall in that category then there is better than even odds you will be alive in 5 years or more.  They still don't know what the mean survival is for that group because it is still being set.  It is also systemic.  The activated T cells can cross the blood brain barrier unlike so many other treatments.  Check out ongoing clinical trials as well.

Best of luck

Kim K

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.

I think you are being offered the best treatments out there but I agree with Kim...ask you doc about IL-2. After surgery I m going with Ipi sometime this yr. Good Luck & God Bless. love , Sharon in Reno Stage IV

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

Ipilimumub in my opinion is an option to be very hopeful about. IL-2 is also an option. It can actually cure about one in 20 patients. I know those aren't great odds, but it can happen. I've met people who have had incredible responses with IL-2.

Have they tested your tumor for c-kit. Tumors that express c-kit may respond to Gleevec.

Carbo + taxol chemotherapy is becoming more popular in the United States. It is probably at least as effective as dacarbazine. Abraxane is a newer chemotherapy drug that has also shown some promise (I'm not sure if it is available in Australia).

Good luck and God bless you,

Pat M

Thanks Pat for the info  unfortuntly I am Ckit negative I forgot to mention that earlier.

Hopefully something will work and I have to do a bit of research before I go back to the doc and bombard her with questions.

Thanks Liz

Ipilimumub in my opinion is an option to be very hopeful about. IL-2 is also an option. It can actually cure about one in 20 patients. I know those aren't great odds, but it can happen. I've met people who have had incredible responses with IL-2.

Have they tested your tumor for c-kit. Tumors that express c-kit may respond to Gleevec.

Carbo + taxol chemotherapy is becoming more popular in the United States. It is probably at least as effective as dacarbazine. Abraxane is a newer chemotherapy drug that has also shown some promise (I'm not sure if it is available in Australia).

Good luck and God bless you,

Pat M

Liz, I am so sorry for all the problems you are having with your Melanaoma.  I don't have any suggestions for you, but looks like others had some good ideas.  I was wondering what were your symptoms for the mets in your intestine?

Thank you....And I will be thinking of you...There are so many people that wonderful here and have such good advice.

 

Take Care,

Sherron, wife to Jim

Originally I had just had a baby and a  c section so every niggle I felt i just put it down to having a baby. My baby was 8 weeks old and I was in seveve pain with stomach cramps and the doc thought it was just a complcation from my C section and scheduled me for a quick surgery to fix a blood clot or so they thought. 7 hours of surgery later they removed 3 tennis ball sized tumors and parts of my small and large intestine....waking up from such a big surgery was a bit of a shock!! The tumors were in the mesentery of the bowel so thats the structure around the outside of the bowel. the cancer was not in the inside the bowel, they able to remove it all with clear margins.

Recently I had been feeling a bit off in that I had dirrihorre 4 times a day which for me missing a few sections of bowel was not abnormal however it seemed to be everyday for quite a few weeks. I would also eat then feel sudden cramping and a have to go to the toilet, after which I would feel immediately better. I was also getting random stabbing ado pain which would last a few moments. One night I had eaten dinner and afterwards felt sick and bloated and very uncomfortable was due for a regular CT the following month, and because my doc just gives me the referral and I make the appointment when I'm due to see her, my husband rang the next day and we brought the CT forward. I thought I was just being my usual hypochondriac self coming up to my 6 month scan however I came back positive with 2 new tumors one behind my stomach and one in the bowel, with a whole heap of smaller nodes involved as well.  It had been 5 months since my last clear scan.

Thanks for your thoughts I hope your husband is doing well

Liz

Thank you to everyone you replied, Its nice to have found this forum as I have felt very isolated for the past 4 plus years with this diesease.

I just need to know that I have a plan and some options you you have given me...doctors sometime don't tell you too much.

Hopefully the DTIC will help some and or the Ippiliumabab if I start that too.

I don't know what other chemo drugs they can use here I was just unber the impression that DTIC was it... so thoses other ones may also be options.

IL-2 looks promising I have not heard of it from doctos here and wonder if its something done in Aust?

Thanks Liz

Hi Liz

Sorry to hear your news, . IL2 was used in Oz but most Doctors have dropped it due as the side effects can be quite severe. In the US they administer the IL2 in an ICU environment. Australia does not seem to have that support set up to look after the patients. I expect its a cost issue.

Ippilimumab is probably the most promising thing out there although as someone else suggested MEK or NRAS drugs are worth asking about so maybe they could check to see if you have the necessary mutations.

best wishes

James.  

Hi Liz,

I don't know anything about this ippiliumabab drug. I just wanted to say that you are in my thoughts and prayers. Hopefully the DTIC does the trick and that you are able to kick this. I am so sorry that you are having to go through this. Take care of your self Stay strong.

Laura

Hi Liz,

I am from California and I also am a stage IV warrior. In 2006 I was diagnosed with that stage. My doctor put me on Biochemotherapy with IL-2 for a total of 18 months. The treatment was very brutal, I have to be honest. In between hospitalizations I had to inject myself with Leukine and IL-2. The treatment totally took away my lung met without surgical intervention. I have been NED for almost 4 years now. There are success stories out here. I wish you the best of luck and if you cannot get that type of treatment maybe you can come to the U.S.

Please keep us posted!

Suzanne

Every day I wake up is a gift!

Anonymous - (8/15/2010 - 7:16pm)

Hi Suzanne,

 

Who is your doctor in California? Do you still see the same doctor?

I Suzanne.. glad to hear that you are NED.

What is the general routine of IL2 is it always and 18mth course of does it depend on the individual?

Thanks

Liz

That is what my oncologist's protocol. I don't know if the same happens with the other doctors and hospitals. It was the ONLY option my doctor  gave me at that time. I know when patients go to stage IV that's what he does. His name is David Minor and he is at the California Pacific Medical Center in San Francisco. Please keep us posted, Liz. I wish you all the best.

Suzanne

Every day I wake up is a gift!

Liz,

My husband has just been through three treatments of the combo Abraxane/Avastin. Three more and rescan. He is Stage IV. Let me know if you are interested in his scan results and I will let you know when we hear something at month's end.

Good luck! Don't listen to numbers and timelines. Just stay positive!

Cheryl

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

I forgot to click on the alert button to let me know if you respond, so I'll do it now!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

Hi Liz

I think they will be recruiting for the phase 2
E7080 trial in Australia soon (see the long list of locations).
http://clinicaltrials.gov/ct2/show/study/NCT01136967?show_locs=Y#locn

See the other recent posts about Eisai and some people having good results who aren't Braf positive.

All my best to you
Emily

Our experience with melanoma: http://emandmichael.wordpress.com/

Liz, IL-2 has the best proven track record for the straight run  of melanoma patients.  Even though that record is 20%  of us having a positive result.  Of the 20% 1/4th have a long term result.  I know some that have been NED for 20 years after taking IL-2.  One advantage of IL-2 is that one has a short recovery time if it does not work and one can then quickly move on to other treatments.  It is a rough treatment, but has historically provided the best chance for postive results of any of the treatments.

Many treatments have worked on some melanoma patients.  The problem is to determine which treatment will work on which patient.  This is where the DNA and signaling pathwork is steadily showing more promise, but still has a way to go.

Ipi currently appears to be the best item in trials for the straight run of melanoma patients.  Wish They would determine who it will work on in advance.

I'm me, not a statistic. Praying to not be one for years yet.

My husband is 6 years NED from Stage VI with bio-chemo.  Agree that it only works in a certain % of people, but when it works you can have a durable remission.

Dear Liz,

I am B RAF negative too. but many of us are. I did the Ipi in a clinical trial and after four infusions all my melanoma tumors disappeared. I did not have organ involvement however. Others have also had a great response to Ipi, and then some have not. We all have to search for what may work for us individually, not based on numbers, statistics, etc.

Good luck to you, and stay strong!

Vermont_Donna, stage 3a

stable after 4 infusions of Ipi