Anyone taking Anti PD1 and MEK combo together?

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital.

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right. I was so not expecting “getting resistant” to look like that.

So, I have more lesions now than before i became resistant.
If they are offering you to go on immunotherapy now, before you get resistant i would go for it.

I am now on Keytruda and having some success, although i am having some liver isues, but everyone is different.

All the best.

Mel

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital.

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right. I was so not expecting “getting resistant” to look like that.

So, I have more lesions now than before i became resistant.
If they are offering you to go on immunotherapy now, before you get resistant i would go for it.

I am now on Keytruda and having some success, although i am having some liver isues, but everyone is different.

All the best.

Mel

In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital.

My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.

After a week or so and a few more blood transfusions, my bloods came right. I was so not expecting “getting resistant” to look like that.

So, I have more lesions now than before i became resistant.
If they are offering you to go on immunotherapy now, before you get resistant i would go for it.

I am now on Keytruda and having some success, although i am having some liver isues, but everyone is different.

All the best.

Mel

My husband is on combo now, going into 9th month. For the past months, every day still nauseous and diareha …….last PET showed right lung tumor significantly shrunk, but the lymph nodes showed now improvement. There was something on the PET in the left lung, but inconclusive.  CT scan scheduled for this week, doctor visit in May 4………we did go on vacation, caribbean, slathered in 70 spf.  He actually got "whiter" if possible, on his arms,etc white patches. No burn, always slathered to protect.

Besides getting bad scan results and confirming meds have stopped working……has anyone had any other 
experiences that made them believe that it wasn't doing the job….any change in sensitivity to it, any skin change……or is it boom, guess it stopped working?  Somehow we feel like we might be at the end of the combo road – but who knows? The CT might prove that whatever was seen new in left lung was nothing at all…….

It's been almost one year [5/21] from when we got the phone call…stage 4, metastatic, malignant – body blows to hear.  It took time for many opinions then to go with BRAF combo…….each day has been hard, one way or another, my husband doesn't work due to a chronic back issue…….but it enters our head, if nothing new, if lymph nodes still lit up from last PET – no change.  Do we do a year of bucket list with no medication…….I know, that sounds crazy right?  He can't eat, lost 25 pounds in the year, depressed…….there may be a moment when I quit my job and we jump ship……

How in the hell are any of us able to figure this out? gamble year of happiness and pray the cancer stays stable like a good little boy? or take a year and then regret if it has caused his life span to shorten? When is quanitity over quality……these questions and decisoins are too hard.

So back to Question 1 – anybody know if there are any indicators when BRAF/MED stops…..

Question 2 – I like the MEK plus anti pd1 – would that lessen side affects?

Rita

My husband is on combo now, going into 9th month. For the past months, every day still nauseous and diareha …….last PET showed right lung tumor significantly shrunk, but the lymph nodes showed now improvement. There was something on the PET in the left lung, but inconclusive.  CT scan scheduled for this week, doctor visit in May 4………we did go on vacation, caribbean, slathered in 70 spf.  He actually got "whiter" if possible, on his arms,etc white patches. No burn, always slathered to protect.

Besides getting bad scan results and confirming meds have stopped working……has anyone had any other 
experiences that made them believe that it wasn't doing the job….any change in sensitivity to it, any skin change……or is it boom, guess it stopped working?  Somehow we feel like we might be at the end of the combo road – but who knows? The CT might prove that whatever was seen new in left lung was nothing at all…….

It's been almost one year [5/21] from when we got the phone call…stage 4, metastatic, malignant – body blows to hear.  It took time for many opinions then to go with BRAF combo…….each day has been hard, one way or another, my husband doesn't work due to a chronic back issue…….but it enters our head, if nothing new, if lymph nodes still lit up from last PET – no change.  Do we do a year of bucket list with no medication…….I know, that sounds crazy right?  He can't eat, lost 25 pounds in the year, depressed…….there may be a moment when I quit my job and we jump ship……

How in the hell are any of us able to figure this out? gamble year of happiness and pray the cancer stays stable like a good little boy? or take a year and then regret if it has caused his life span to shorten? When is quanitity over quality……these questions and decisoins are too hard.

So back to Question 1 – anybody know if there are any indicators when BRAF/MED stops…..

Question 2 – I like the MEK plus anti pd1 – would that lessen side affects?

Rita

My husband is on combo now, going into 9th month. For the past months, every day still nauseous and diareha …….last PET showed right lung tumor significantly shrunk, but the lymph nodes showed now improvement. There was something on the PET in the left lung, but inconclusive.  CT scan scheduled for this week, doctor visit in May 4………we did go on vacation, caribbean, slathered in 70 spf.  He actually got "whiter" if possible, on his arms,etc white patches. No burn, always slathered to protect.

Besides getting bad scan results and confirming meds have stopped working……has anyone had any other 
experiences that made them believe that it wasn't doing the job….any change in sensitivity to it, any skin change……or is it boom, guess it stopped working?  Somehow we feel like we might be at the end of the combo road – but who knows? The CT might prove that whatever was seen new in left lung was nothing at all…….

It's been almost one year [5/21] from when we got the phone call…stage 4, metastatic, malignant – body blows to hear.  It took time for many opinions then to go with BRAF combo…….each day has been hard, one way or another, my husband doesn't work due to a chronic back issue…….but it enters our head, if nothing new, if lymph nodes still lit up from last PET – no change.  Do we do a year of bucket list with no medication…….I know, that sounds crazy right?  He can't eat, lost 25 pounds in the year, depressed…….there may be a moment when I quit my job and we jump ship……

How in the hell are any of us able to figure this out? gamble year of happiness and pray the cancer stays stable like a good little boy? or take a year and then regret if it has caused his life span to shorten? When is quanitity over quality……these questions and decisoins are too hard.

So back to Question 1 – anybody know if there are any indicators when BRAF/MED stops…..

Question 2 – I like the MEK plus anti pd1 – would that lessen side affects?

Rita