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  • in reply to: choroidal melanoma #66835
    Violeta
    Participant

    Thanks Tamils! Yervoy is available in Romania , but Keytruda not yet, but he can eventually go after yervoy for a EAP in Europe. This is the plan he agrees as well , but I was looking for some confirmation… Although imunoteraphy is not doing a lot for ocular melanoma might be better than nothing. Best wishes,

    in reply to: PD1 staging study…….big news or more noise? #64709
    Violeta
    Participant

    Hi cthornton , hi Catherine,

    I read also about these findings, for example this asco abstract:

    Baseline tumor size as an independent prognostic factor for overall survival in patients with metastatic melanoma treated with the anti-PD-1 monoclonal antibody MK-3475.

    http://meetinglibrary.asco.org/content/134724-144

    My sister has big ulcerated tumors on the left arm (try to imagine 2-3 oranges on the upper arm, plus other many smaller). She did not respond nor to Yervoy, neither to Nivolumab. The only successful drugs for her were Brafi, but she got resistant also first time and also during rechallenge. We recently asked the doctors in Brussels about the option of MK 3475, but they do not recommended it in her case. I trust this opinion as far as concern my sister. I know her disease by hard. It is not likely her tumors (too big and aggressive) will be shrunk by immunologic treatment. In the rest of the body she had no significant metastasis/tumors. But the problems which are coming from the arm tumors (pains, infections, bleeding, anemia, hypercalcemia) are enough to kill her.

    in reply to: ASCO #64606
    Violeta
    Participant

    Thanks Arno,amassing results indeed! i hear them from Bettina in her reporting liveblog from ASCO. My sis was unfortunately not a responder for yervoy and neither for nivolumab. I hope she is fitting now for the EAP of Merck, but..just curious if patients like her can be eligible for this nivo-yervoy trial.

    in reply to: Tafinilar inastead of Zelboraf #64633
    Violeta
    Participant

    From what I know sun sensitivity is not an adverse effect of Dabrafenib/tafinlar. In general is better tolerated and easier to be taken (4 small tablets 2 x 2 per day. my best wishes.

    in reply to: ASCO #64604
    Violeta
    Participant

    Thanks for asking , Catherine.

    what can i say.. is a nightmare. In the last month and half she had 2 blood transfusions and 3 times was treated for hipercalcemia and infections; she is bound to the bed and has awful pains. Apparently the mixture of dabra and trametinib is not so effective for her situation, but her oncologist is saying that it is keeping her alive somehow; we will go again for an evaluation at brussels at the end of june. Sometimes I hope for her, sometimes I am desperate. Most of the time I thanks to God she is still alive.

    in reply to: ASCO #64602
    Violeta
    Participant

    Hi,

    for anti- PD1s some differences we can see in the indicator called OS rate.

    Bellow is some data Bettina posted on the blog ‘asco 2014” on melanoma patient network europe:

    For PD1 BMS:

    ”After 1 year, 63% of all patients are still alive.

    http://mpneatasco.blogspot.com/2014/05/long-term-survival-of-ipilimumab-naive.html

    For PD1Merck:

    ”In comparison, after 1 year on the Merck PD1, 86% of patients with PDL1 positive tumours and 72% of patients with PDL1 negative tumours were still alive as presented at AACR earlier this year.

    http://www.aacr.org/home/public–media/aacr-press-releases.aspx?d=3307

    in reply to: about my sis #64126
    Violeta
    Participant

    Thanks Catherine and Sue.

    Her situation is even worst now, blood tests started to be more abnormal, last week she got low calcium and in the Easter day she went again in hospital. she is screaming of pains. we want to try radiotherapy asap if she is not able to reach Brussels on sunday. Is killing me she is suffering so much.. My younger sisters and her partner are there with her in romania and me here in netherlands I can only wait here to meet in brussells this sunday. she hope she will be able to travel to get CU for dabrafenib and trametinib, but my God looks like an impossible mission. I dont know what to do anymore for her, I dont know how to help her..she is dying, is dying, only this is in my mind and there is nothing that works for her anymore.It is too hard.

    in reply to: Feeling Helpless #64131
    Violeta
    Participant

    Maggie, I am so sorry to hear this. I wish you a lot o strength to fight for her. I am praying for you, for us.

    in reply to: Please help #64123
    Violeta
    Participant

    Thanks Catherine, I sent recently emails to the doctors, I spoke with m-icab as well, lets see what can be done…Is Easter holiday, things are not easy. I am just trying all the possible ways.

    I will email you.

    Edit : doctors were very helpful, one month was the fastest possible.

    in reply to: Clinical Trial Patient Rights #64096
    Violeta
    Participant

    Dear all, I am happy that this melanoma support community exists. Like everybody said before, we need clinical trials and clinical trials needs us. And like many others here, I wrote my experience not only to get rid of frustration, but also with the hope that we can do something to change these things. I am happy my sis had access to the new treatments. She gained more time due this treatment. For her, for our family the biggest psychological support is to NOT be left without treatment options. Research is for us the hope. Until a cure will be discovered, to gain time for her, this is our fight in melanoma. This is the fight I will never give up. And within this big fight we have to find an way to balance the relationship between patient and clinical research. With all the best for all of you, Violeta

    in reply to: Clinical Trial Patient Rights #64095
    Violeta
    Participant

    I am happy to see this discussion. It is for me some kind of confirmation. Sometimes I was thinking must be a mistake, they dont want to be insensitive or disrespectful, it is only what we feel and ok, this might be subjective…You may remember that my sis is in the trial with nivolumab. Well, for us the doctors from my sister trial did not feel at all compassionate or at least respectful. In fact to use the word ”doctors”is too much. They put only one investigator in front and the rest are very well hidden in the back. When you ask too much or the questions become uncomfortable they are not responding to you anymore to the emails. An example: in the consent form is written that trips of patient to the trial site will be reimbursed. Even clear enough, they said’ we must ask the company’. After three months of ‘hard’ asking they came back with the idea of giving to my sis the sum of 77,50 euros (?) for all her trips from our country to germany. Why this ridiculous sum we dont know. We sent an email with an extras from the consent form to the person charged with financials of trial (as told). That person never replied to our email, just transmitted (verbally) that what is written in the consent form (in English actually) is only for national germans,which obviously we are not, so…end of a glorious article of the consent form. Better to take it out , if is not applicable and not to play like patients are idiots. Then ok, you feel like you are doing something wrong, you are not german, but they accepted you in the trial, be grateful and do not demand too much. But this is not working inverse. In the same time my sis is imperiously asked to report every paracetamol is putting in the mouth or to schedule her next infusion without knowing the results of her staging. Even ‘nicer’ recently she was informed they cannot change anymore the bandages around her arm tumors, because of the costs involved. My sis felt quite bad about this.. so they are going to take pictures of the arm tumors whenever they want, but she has to bandage afterwards alone or to pay for it. How compassionate or human is this?..Like is not enough to have melanoma.

    in reply to: Articles related to melanoma #63809
    Violeta
    Participant

    Through a friend I discovered yesterday an interesting article about the effect of copper on melanoma tumors:

    http://www.nature.com/nature/journal/vaop/ncurrent/full/nature13180.html#access

    ‘Cu chelators used in the treatment of Wilson disease decreased tumour growth of human or murine cells transformed by BRAFV600E or engineered to be resistant to BRAF inhibition. Taken together, these results suggest that Cu-chelation therapy could be repurposed to treat cancers containing the BRAFV600E mutation”

    Linked to this I noticed also a pilot study combining trientina (a cooper chelator) and vemurafenib.

    http://clinicaltrials.gov/ct2/show/NCT02068079

    I hope something good will come out from this study.

    in reply to: MICAB Meeting in Brussels honoring Pati #63979
    Violeta
    Participant

    Indeed Catherine! eso-m-icab conference held in Brussels last week-end was also for me an amassing event. I was happy with the discussions on (easier) access to clinical trials, especially in areas like east European countries (such as Romania, my country). Informing patients about clinical research/clinical trials is a starting point for me. I did find out about clinical trials from you after one year and half since my sister was diagnosed. Other people maybe cannot reach you ..However even my sis could die meanwhile, because we were not aware these new therapies can be accessed within clinical trials! If you do not about clinical trials , you obviously would not consider them as treatment option; this is a pity since a lot of experimental/new approved treatments are better than the conventional chemotherapy.

    Also, I was very impressed with the memorial ceremony for Patricia, who’s melanoma experience and work I know only from mif and micab, but never I met her..she was an incredible woman!

    And..I was happy too to meet you in person! :-)

    Violeta
    Participant

    Thank you Hein for confirmation! I had also this impression, that prof. did not know yet. For me – and I am sure not only – this research means a lot. It is opening more perspectives within the treatment with Braf mutation inhibitors..

    I hope too to see soon clinical trials on this subject!

    Violeta
    Participant

    Catherine, I think the professor form m-icab conference was speaking about the study on mouses that has been published (edit) in Febr. 2013 http://www.nature.com/nature/journal/v494/n7436/full/nature11814.html or https://www.ucsf.edu/news/2013/01/13389/drug-resistant-melanoma-tumors-shrink-when-therapy-interrupted

    But the article from Nature which I mentioned (and which Hein post it as news feed) was published last Thursday on 26 March 2014: http://www.nature.com/nature/journal/vaop/ncurrent/full/nature13121.html

    Is good to read the entire article in order to draw a conclusion, but what I understood from the abstract is that experiments were done on human tumors. I hope I am not wrong. edit:Who knows… maybe clinical trials will follow.

Viewing 15 posts - 1 through 15 (of 49 total)