Roberto

Dear Celeste,how good it is to talk and learn from you

it took me a while to respond because Mariana, my wife, was hospitalized after my message. She had a series of 4 seizures, within a 40-minute interval, which according to doctors, was probably due to immunotherapy with opdualag and Lenvatinib, since the MRI scans did not detect any brain metastases.

Have you ever heard about this, seizures caused by immunotherapy?
Has anyone ever heard about this?

Mariana was using opdualag together with Lenvima.

Regarding her question, yes, with the exception of NKTA, she has already used the medications you mentioned. Yes, she did tests to detect genomic variations. They found no mutations.

In addition to the seizures, she was diagnosed with colitis. Just returning home she is completely swollen, all parts of her body. It seems like a strong allergic effect. With these side effects and her current health status, she is practically unable to undergo chemotherapy.

However, look at the situation: Mariana has many skin and subcutaneous lesions. We noticed that in the last week the lesions had reduced considerably in size. A big one is almost gone.

It’s early, maybe I’m just relying on a first impression, but her relationship with the disease is quite unusual. Mariana had metastatic melanoma for the first time in 2002 (she became NED until 2014 with surgery alone). She has had active disease for 9 years, of which 7 years with metastasis only in the left leg. The disease only spread to other parts of the body when she had to amputate her leg due to osteomelitis (radiotherapy left the bone exposed and ended up becoming infected). Have you heard about this?

Mariana had 4 Isolated limb perfusions with complete response in a leg with more than 50 lesions (look at the chemotherapy working). The surgeon said that he is unaware of anyone in the literature who has undergone 4 Isolated limb perfusions and with such quick and strong responses, although not lasting (6 months on average). Furthermore, the enormous amount of treatments that Mariana underwent is out of the ordinary. Generally, patients either recover or die sooner.

I know, maybe I’m just holding on to wisps of hope. It’s all I have now.

Hello, my wife did the TIL in Israel. The total cost can be up to $ 200,000, but it can be less, depending on where the injury will be removed. They have a specific area to treat foreigners, a kind of medical tourism. To facilitate the bureaucracy I hired a health agent, who takes care of everything for me. It is not essential, but it helps a lot. He really got things going. I strongly recommend. If you want any information feel free to ask
Roberto

I’m praying for him. if anyone has any information….please let us know

praying for you.

Hi Jack, glad you liked the new doctor. this is better than many treatments. You commented on IL-2. What about Til? The results are much better than Il-2. I know there are many suggestions and guesses but it is that we all want the best for you and I pray a lot because I know that your success will be a hope for those who are in the same situation as you.

I know it’s hard, but we can not be discouraged. I also expected a better result in your exams, since my wife’s history of illness is very similar to yours. She did not respond to Ipi, she did not respond to the Nivo and now it seems that she is not responding to the ipi / nivo combo (the petscan will be 2 senanas). But one thing we have noticed, the speed of progression of the disease without the use of nivolumab is much faster. I do not know if it would be a good idea for her to be without Nivo even in case of progression. Talk to your doctor about the possibility of maintaining Nivo while not starting a new treatment. Remembering that much of the new treatments also include the Nivo, such as: radiaçao more nivo, t-vec more nivo etc. Moreover, the possibility of delayed effects can not be forgotten. It is rare, but they happen until after 6 months or more.

Thank you Celeste for your advice.
Unfortunately, we do not have any intralesional medication approved in Brazil for melanoma. There was a clinical trial with T-Vec, but Mariana did not qualify. We are out of options. Our goal now is to control the pain and treat the colitis. 30mg of morphine every 4 hours is not working.

Bubbles:
<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Melanoma em qualquer lugar é melanoma. </font><font style=”vertical-align: inherit;”>Seio, cérebro, pele, intestinos, ossos, pulmão, etc. Por exemplo – meu melanoma no pulmão era melanoma. </font><font style=”vertical-align: inherit;”>Não é câncer de pulmão. </font><font style=”vertical-align: inherit;”>A cartilha para a qual incluí um link aborda os tratamentos eficazes atuais para o melanoma. </font><font style=”vertical-align: inherit;”>A quimioterapia tradicional (como a primeira dose que sua irmã tomou) não faz nada ao melanoma. </font><font style=”vertical-align: inherit;”>Eu realmente não entendo os resultados anotados à medida que são escritos. </font><font style=”vertical-align: inherit;”>Você precisa ter certeza de que eles testaram o tumor da sua irmã para verificar o status BRAF. </font><font style=”vertical-align: inherit;”>(Isso é abordado no link.) Porque os tratamentos atuais mais eficazes para o melanoma são a imunoterapia e os inibidores BRAF combinados com inibidores MEK. </font><font style=”vertical-align: inherit;”>NO ENTANTO, a terapia direcionada (a combinação BRAF/MEK) só funciona em pacientes com melanoma que são positivos para BRAF (cerca de metade dos pacientes com melanoma). </font></font>

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Acho que a revisão da cartilha ajudará você a entender e fazer perguntas melhores quando sua irmã consultar um oncologista experiente no tratamento de pacientes com melanoma! </font><font style=”vertical-align: inherit;”>E isso precisa acontecer o mais rápido possível.</font></font>

<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>seu, c</font></font>

Dear Bubbles,

My wife is one of those who went through all these treatments that you discussed on your blog. In fact, she went through some that are not there, such as isolated limb perfusion (this one 3 times) and TIL. let’s go, in order:
1- Surgery,
2- ipilimumab,
3- nivolumab,
4- ipilimumab + nivolumab,
5- isolated limb perfusion (3x),
6- pembrolizumab + radiotherapy,
7- TIL (infiltrating lymphocyte therapy),
8- lenvatinib + pembrolizumab
9- relatinib + nivolumab (opdualag)
9- denosumab + nivolumab + relatinib (opdualag), 10- lenvatinib + denesumab + nivolumab + relaninib.

She managed to obtain many of these treatments through clinical studies.

Well, she continues to progress and the only thing missing is the old chemotherapy. In this case, a triple-drug regimen containing cisplatin, vinblastine, and dacarbazine (CVD) was recommended. It is scheduled to begin in October.

I don’t know anything about these treatments, what do you think? patients who have already participated in everything (or almost everything) could try CVD chemical therapy).

The fact is that there is no longer any option for us. My hope is that this chemotherapy will be able to reduce the disease and Lenvima will then come in to stop the progression (of all the treatments above, Lenvina was the only one that managed to slow down the progression.

Thoughts:
We will survive.
We always survive.