Home Forums Newly Diagnosed Stage III/IV Need help in Russia (stage IV)

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  • #22343
    Elena7
    Participant

    Dear Catherine,

    Thank you very much for your work!!! Your website is an extremely informative and encouraging resource.

    We desperately need your kind advice at the moment.

    On Jan, 27, 2015 my mom 64 y.o. was diagnosed Melanoma IV with numerous mets in abdomen and liver. The mole is on her left hip, she started to have a visible tumor on the left part of her lower abdomen in December. Then in January she started to suffer from side pains (especially on her right), lost some (not much) weight, her urine became darker but the analysis is fine so far. A few days ago she started to have hot flashes.

    We had CT last week, it proved distant spread: numerous mets in the liver and lymph nodes, no mets in lungs and brain. They say the liver is severely damaged.

    On Feb, 2 they took a biopsy for detecting gene mutation and confirm the diagnosis (from the enlarged node (conglomerate)).

    The results of the biopsy should be available only in 14 days… By this time I would like to find out what options we have. We are in Russia and I’m very scared that we will be very much limited in clinics and treatment choice. Please advise how we can find a melanoma specialist. We are ready to share the ultrasonic examination results, CT results (in DICOM format), blood and other tests. Please let us know if maybe we can get some on-line consultation? Where should we go to get advice by a melanoma expert?

    I’ve heard about Zelboraf, and as far as I understand depending on the biopsy test we will find out whether it can be prescribed. I know this drug is registered in Russia and it costs a fortune. I’m looking for some clinical trial that can offer ways of treatment for our diagnosis. Please advise if my mom is illegible to any clinical trials in other countries? What else can and should be done in this situation? Can she take any pills for liver (like Essentiale Forte) to protect it from further destruction?

    We’ve got so many question… will be very grateful for your professional answers.

    Many thanks in advance,

    Elena.

    #66255
    rick1981
    Participant

    Hi Elena,

    Sorry to hear about your & your mom’s situation.

    It’s important to get the biopsy results and determine if she’s BRAF positive.

    If she is, she could either go on:

    “Inhibitors”: work quickly and for most patients. Types include Zelboraf (Vemurafenib) or Tafinlar (Dabrafenib) – ideally combined with a so-called MEK inhibitor (Mekinist: trametinib).

    “Immunotherapy”: Yervoy (ipilimumab) or the newer Keytruda (pembrolizumab) or Opdivo (nivolumab). These work for fewer patients (10-20% for Yervoy, 30-40% for the other two) and take longer to show its effects typically.

    I’m not sure what the situation in Russia is regarding the availability of these medicines though – and what your insurance covers. My wife is Ukrainian – so I know often things have to be paid in cash. And yes, any of the above-mentioned drugs are VERY expensive unfortunately.

    In terms of alternative therapies, in Europe some oncologists believe in products like Iscador by Weleda, which is a herbal (mistletoe-derived) medicine via injections. It’s not proven though but it all depends on which of the medicines mentioned above you can get a hold off.

    Other supplements worth looking into: tumeric/kurkuma, coQ10, resveratrol, Reishi/Maitake mushroom extracts and potentially cannabis oil (not sure if this is legal in Russia).

    Regarding your mom’s liver. My wife takes “lon” – you probably know this. A typical Eastern European juice made from boiled flax seed that helps the liver a bit. Be careful with other “forte” treatments (and mushrooms mentioned above) as they can do more harm than help in case she has serious liver failures.

    Is travel to Germany an option? You may have more opportunities there but again, not sure about your insurance/financial situation.

    That’s all I can think of for now.

    Good luck!

    Rick

    #66256
    Mikers
    Participant

    Dear Elena,

    the treatment possibilities also depends on where you are. In Moscow and St.Petersburg they have some extended access programs for Zelboraf and Yevroy. But to get in you should start with usual treatment including Dacarbazin (chemo). If there will be progress with chemo – you will be eleigeble to apply for EAP for zelboaraf and afterwards – to Yevroy. There is also a program

    http://grls.rosminzdrav.ru/CiPermitionReg.aspx?DateBeg=&DateEnd=&DateInc=&NumInc=&RegNm=&Statement=&Protocol=&Torg=%D0%BD%D0%B8%D0%B2%D0%BE%D0%BB%D1%83%D0%BC%D0%B0%D0%B1&LFDos=&Producer=&Recearcher=&OrgDocOut=2&Status=1&NotInReg=0&All=0&PageSize=8&order=date_perm&orderType=desc&pagenum=1” class=”bbcode_url”>http://grls.rosminzdrav.ru/CiPermitionReg.aspx?DateBeg=&DateEnd=&DateInc=&NumInc=&RegNm=&Statement=&Protocol=&Torg=%D0%BD%D0%B8%D0%B2%D0%BE%D0%BB%D1%83%D0%BC%D0%B0%D0%B1&LFDos=&Producer=&Recearcher=&OrgDocOut=2&Status=1&NotInReg=0&All=0&PageSize=8&order=date_perm&orderType=desc&pagenum=1

    in Moscow including Nivomulab (opdivo). But you will also need the consequence chemo->Yevroy->Nivomulab. If you are nit ready to start with chemo and wait – better to search through Europe. You can start with the webpage which Catherine have recommended and to email them.

    #66257
    Mikers
    Participant

    Dear Rick, you’ve mentioned some alternative therapies. Are there any sources where we can read about it? I’ve been often told to try some herbs or others but never trusted though, since there are no pure scienitifical papers proving efficiency…

    #66258
    Elena7
    Participant

    Dear Friends,

    Thank you so much for your detailed answers. Lots of useful information!

    Please share your experience about the following schemes (what’s better?):

    1.dabrafenib/trametinib or

    2.ipilimumab followed by pembrolizumab

    We are thinking about going to Germany or Brussels.

    If you have any advice, it will be very much appreciated.

    Dear Rick, could you please tell more about “lon” (cannot find any information about it).

    Thank you!

    Elena.

    #66259
    rick1981
    Participant

    Hi Elena,

    The debate is still ongoing about dabrafenib/trametinib vs yervoy/keytruda-opdivo. What to take first? Use them intermittently etc.?

    As a layman (!), I’d say if your mom has very serious & urgent issues: go for dabrafenib/trametinib, it has a very high response rate and works almost instantaneously. I don’t have the data in front of me know, but I believe the median progression free time is 9months and 2 years overall survival.

    Yervoy followed by either Keytruda or Opdivo has a much lower reponse rate and takes more time to kick in. However, this therapy has more potential to give a durable response.

    Either way, the therapies can follow each other, no matter which you take first.

    Regarding the drink. It’s a “grandma’s cure” but is said to help protect the liver. It’s spelled Лён in Russian and basically you boil it until it gets a gelatine-like texture and then you drink it before pills etc.

    Good luck with your decision,

    Rick

    PS. For Brussels, I highly recommend Dr. Neyns who is a melanoma specialist at the UZ Brussels.

    #66260
    rick1981
    Participant

    Mikers wrote:

    Dear Rick, you’ve mentioned some alternative therapies. Are there any sources where we can read about it? I’ve been often told to try some herbs or others but never trusted though, since there are no pure scienitifical papers proving efficiency…

    Hi Mikers,

    Evidence is always tricky with these alternative therapies – but most of them do no harm so you can do them in addition to your medicinal treatment.

    Some evidence though, from reliable sources:

    Zylfamend (herbal supplement):

    http://www.cancer.gov/cancertopics/pdq/cam/prostatesupplements/healthprofessional/page10

    “preclinical tests… improved cancer suppression…”.

    And from MD Anderson Cancer Center in Houston: “may have synergistic effects against melanoma cell proliferation” with a BRAF inhibitor. http://www.agt-info.org/Documents/2014%20Annual%20Meeting/HANDOUT%20Yo%20-%20Student%20Research%20Award.pdf

    Curcuma / Tumeric:MD Anderson: “works to block growth of melanoma in a lab test”. http://www.mdanderson.org/newsroom/news-releases/2005/07-11-05-potent-spice-works-to-block-growth-of-melanoma-in-lab-test-news-release.html

    Cannabis / THC Oil:

    You’ll find many anecdotes of how cannabis oil “cured cancer” even documenten in world-class newspapers. Nothing has been proven but cancer.gov writes “The American Cancer Society supports the need for more scientific research on cannabinoids for cancer patients”.

    Iscador/Mistetoe:

    “Subgroup analysis demonstrated clinically relevant enhancement in the survival of both groups of patients who received Iscador. The median OS in patients who were classified as having a good prognosis was 6.6 months for the Iscador group versus 3.2 months for controls” (cancer.gov / http://www.cancer.gov/cancertopics/pdq/cam/mistletoe/HealthProfessional/page5).

    “Being the number one complementary treatment for cancer in Europe”.

    More info on supplements / alternative therapies can be found on MPIP – and Catherine Poole has posted more info on cannabis oil recently..

    Rick

    #66261
    Elena7
    Participant

    Dear Rick, thank you so so much! My kindest regards and best wishes!

    #66262
    Catherine Poole
    Keymaster

    Please tell your doctor if you intend on using any alternative medicine, actually a field called CAM. MPIP does not monitor the posts for scientific validity, so be cautious with the advice there. I would read up here first: http://www.mayoclinic.org/healthy-living/consumer-health/in-depth/alternative-medicine/art-20045267?pg=2

    The scientific validity isn’t well proven and sometimes these “natural” substances can conflict with current medicine. Please read my blog too: http://melanomainternational.org/2013/12/can-diet-or-supplements-hurt-or-cure-you/#.VNUMNSx0ytU

    #66263
    Elena7
    Participant

    I would like to express my gratitude to the forum, to Catherine and Rick. We have followed your advice and went to Prof.B.Neyns. By the time we came to Brussels my mom became really weak and lost about 10 kg, could hardly walk and felt very tired, all this happened so fast. We made new CT here: besides the liver there are new liaisons (3 in her spine and 1 in her rib). She started to take combo on the day of out appointment (Feb, 23) and felt some relief almost immediately (no more vomiting and pain in her right leg). Thanks to you, thanks to the doctors, thanks to God we will spend more time together!

    #66264
    Catherine Poole
    Keymaster

    Elena,

    So happy to hear this news! I hope she continues to do well and don’t forget to take good care of YOU!

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