Want2help

Hi Maria,
I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
It might be worth just to ask. I wish you all the best!

Hi Maria,
I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
It might be worth just to ask. I wish you all the best!

Hi Maria,
I’m so sorry about what your mother is going through and for you too, you are doing a great job supporting her.
I would also ask about monotherapy with anti PD1. I also wonder if anyone has mentioned KIT inhibitors. I read somewhere that BRAF mutations are less common in mucosal melanoma and KIT mutations seem to be more common in mucosal melanoma than others.
http://m.cancer.org/cancer/skincancer-melanoma/detailedguide/melanoma-skin-cancer-treating-targeted-therapy
It might be worth just to ask. I wish you all the best!

I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

 

I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

 

I'm so sorry about this development. I read your posts and saw that you have done Yervoy, Keytruda and the Yervoy+Opdivo combo. Are you BRAF-negative? I guess so since you have not mentioned BRAF/MEK inhibitors.

You can ask your onc if local treatment of the liver could be an option. I know that the new systemic therapies are considered more efficient in general but maybe it could help.

http://www.upmc.com/Services/regional-perfusion/treatment/Pages/isolated-hepatic-perfusion.aspx

 

I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know –  if you and your husband want that information.

Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.

I wish you all the best!

 

I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know –  if you and your husband want that information.

Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.

I wish you all the best!

 

I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know –  if you and your husband want that information.

Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.

I wish you all the best!

 

Just a few questions. How was the pneumonia diagnosed? Are you taking antibiotics and are you already better? My experience is that standard care for pneumonia is a blood test to verify an infection, the doctor listens to the lungs and prescribes a standard antibiotics. If the infection is caused by a common bacteria and the antibiotics work, you usually get better within a day or two, but if you have a less common infection you might need another kind of antibiotics. Unfortunately it is impossible to know immediately since the lab must grow a sample, which takes a couple of weeks. The sample is taken from your nose (very unpleasant) and in case they have not taken any I think that you should ask about it. For a normal patient, there is no x-ray done while the pneumonia is still active, only after the infection is gone since it is difficult to see anything. However, for a melanoma patient an x-ray might be appropriate immediately and your onc must know what to do.

Just a few questions. How was the pneumonia diagnosed? Are you taking antibiotics and are you already better? My experience is that standard care for pneumonia is a blood test to verify an infection, the doctor listens to the lungs and prescribes a standard antibiotics. If the infection is caused by a common bacteria and the antibiotics work, you usually get better within a day or two, but if you have a less common infection you might need another kind of antibiotics. Unfortunately it is impossible to know immediately since the lab must grow a sample, which takes a couple of weeks. The sample is taken from your nose (very unpleasant) and in case they have not taken any I think that you should ask about it. For a normal patient, there is no x-ray done while the pneumonia is still active, only after the infection is gone since it is difficult to see anything. However, for a melanoma patient an x-ray might be appropriate immediately and your onc must know what to do.

Just a few questions. How was the pneumonia diagnosed? Are you taking antibiotics and are you already better? My experience is that standard care for pneumonia is a blood test to verify an infection, the doctor listens to the lungs and prescribes a standard antibiotics. If the infection is caused by a common bacteria and the antibiotics work, you usually get better within a day or two, but if you have a less common infection you might need another kind of antibiotics. Unfortunately it is impossible to know immediately since the lab must grow a sample, which takes a couple of weeks. The sample is taken from your nose (very unpleasant) and in case they have not taken any I think that you should ask about it. For a normal patient, there is no x-ray done while the pneumonia is still active, only after the infection is gone since it is difficult to see anything. However, for a melanoma patient an x-ray might be appropriate immediately and your onc must know what to do.

Yes, I think that they should take this seriously. In case there is something going on in your lungs, pneumonia is a likely symptom. It might not be possible to get a clear x-ray until the infection is gone, but it should get better very soon with antibiotics. I had a benign tumour in my lung and it was found because I had pneumonia several times within a short time.

Yes, I think that they should take this seriously. In case there is something going on in your lungs, pneumonia is a likely symptom. It might not be possible to get a clear x-ray until the infection is gone, but it should get better very soon with antibiotics. I had a benign tumour in my lung and it was found because I had pneumonia several times within a short time.

Yes, I think that they should take this seriously. In case there is something going on in your lungs, pneumonia is a likely symptom. It might not be possible to get a clear x-ray until the infection is gone, but it should get better very soon with antibiotics. I had a benign tumour in my lung and it was found because I had pneumonia several times within a short time.