Feels like getting a treatment plan is impossible after recent stage 4 diagnosis.

The time between diagnosis and starting treatment can definitely feel a bit like limbo. Waiting a week or two to find out if she has a mutation, like BRAF, will help determine if the path she wants to take is targeted therapy. The other immunotherapy options will be open to her no matter if she has a mutation or not, such as Ipi/Nivo combo or Pembro (keytruda). It's not unusal to wait a couple of weeks to start treatment, taking time to find a good melanoma specialist and figuring out a treatment path is good to do and what most of us do. 

All the best,

Sorry you are going through this… diagnoses like this are hard on everyone.  I think every doctor must handle it differently, but mine decided to start me on ipi/nivo while we waited for my BRAF results.  

As it turned out, I was BRAF positive – had one infusion, and then started on the targeted therapy two weeks later.  It does take some time for the pills to get cleared through insurance and then process with a pharmacy as well.  With this said, I realize I had a lot of drugs in my system over a short period of time and given the range of side effects, might not be advisable for everyone.

Waiting is definitely very difficult – continue to press quickly & politely with all the medical depts/offices, etc.  I think this is critical to gaining the sense that you are not helpless – and thankfully there are a lot of treatment options.

Hi,

Get your consultation with a melanoma expert set up as soon as you can. If your Mum is up to it then ipi nivo combo is likely first line recommendation regardless of BRAF status if approved where you live.

If not- pembro or nivo as sole agents are a good option- the combo seems to confer benefits only if tumours express low levels of PD1. If the mutation analysis gives more treatment options then they could then be put in place speedily but getting your appointments lined up specialists would be the first step- together with collecting relevant info like copy scans etc. if you are in the USA- different for me in the UK.

I think it is easier to cope with once you have made a treatment decision but then comes the anxiety from dealing with the side effects ( which vary incredibly between individuals) and anxiety re the results of the next scan. Starting treatment definately allows a window of hope for all concerned.

Melanoma does bring with it a loss of control and appreciation of the really important things in your life.

As for diet etc- rich / high fat foods are best avoided- try to reduce liver toxic drugs- probiotics in anticipation of immunotherapy might be worth a go.

Sorry your family is having to deal with all of this. I would not wait for mutation result before getting second opinion/referral in place- result will probably be back by the time youmeet the docs and the waiting game is not good in helping to manage the inevitable anxiety.

Best of wishes to you all.It does get slightly easier to deal with after the initial shock and once you have a medical team in place you are comfortable with.

Hang on in there-

Deb

So sorry you have to deal with this. I am in a similar spot to you mother, recently diagnosed as stage 4 and just gone through that frustrating period of waiting for results and exploring treatment options. But there are definitely things you can do in that period and it's sounds like you are doing so. Getting. The second opinion from a specialist is a smart move. I also made some dietary changes to improve my immune system during that time, guided by wonderful wife is is super knowledgeable and passionate on the role of nutrition in fighting cancer. I decided the BRAF result was not that important relative to my initial treatment decision as I had determined that immunotherapy was the right place to start given the better longer term outcomes. A test I did decided to wait on was the PD-L1 as that played a role in chosing between the single therapy or the combination. My PD-L1 came back very low so I started on the combination therapy (ipi/nivo) last week. Hang in there. As others have said, it worth taking a couple of weeks to see the right people and make the decision that makes most sense. There is less chance of second guessing that way.

So sorry you have to deal with this. I am in a similar spot to you mother, recently diagnosed as stage 4 and just gone through that frustrating period of waiting for results and exploring treatment options. But there are definitely things you can do in that period and it's sounds like you are doing so. Getting. The second opinion from a specialist is a smart move. I also made some dietary changes to improve my immune system during that time, guided by wonderful wife is is super knowledgeable and passionate on the role of nutrition in fighting cancer. I decided the BRAF result was not that important relative to my initial treatment decision as I had determined that immunotherapy was the right place to start given the better longer term outcomes. A test I did decided to wait on was the PD-L1 as that played a role in chosing between the single therapy or the combination. My PD-L1 came back very low so I started on the combination therapy (ipi/nivo) last week. Hang in there. As others have said, it worth taking a couple of weeks to see the right people and make the decision that makes most sense. There is less chance of second guessing that way.

So sorry you have to deal with this. I am in a similar spot to you mother, recently diagnosed as stage 4 and just gone through that frustrating period of waiting for results and exploring treatment options. But there are definitely things you can do in that period and it's sounds like you are doing so. Getting. The second opinion from a specialist is a smart move. I also made some dietary changes to improve my immune system during that time, guided by wonderful wife is is super knowledgeable and passionate on the role of nutrition in fighting cancer. I decided the BRAF result was not that important relative to my initial treatment decision as I had determined that immunotherapy was the right place to start given the better longer term outcomes. A test I did decided to wait on was the PD-L1 as that played a role in chosing between the single therapy or the combination. My PD-L1 came back very low so I started on the combination therapy (ipi/nivo) last week. Hang in there. As others have said, it worth taking a couple of weeks to see the right people and make the decision that makes most sense. There is less chance of second guessing that way.

So sorry you have to deal with this. I am in a similar spot to you mother, recently diagnosed as stage 4 and just gone through that frustrating period of waiting for results and exploring treatment options. But there are definitely things you can do in that period and it's sounds like you are doing so. Getting. The second opinion from a specialist is a smart move. I also made some dietary changes to improve my immune system during that time, guided by wonderful wife is is super knowledgeable and passionate on the role of nutrition in fighting cancer. I decided the BRAF result was not that important relative to my initial treatment decision as I had determined that immunotherapy was the right place to start given the better longer term outcomes. A test I did decided to wait on was the PD-L1 as that played a role in chosing between the single therapy or the combination. My PD-L1 came back very low so I started on the combination therapy (ipi/nivo) last week. Hang in there. As others have said, it worth taking a couple of weeks to see the right people and make the decision that makes most sense. There is less chance of second guessing that way.

Two weeks seems like a long time to wait for BRAF confirmation.  Based on your description of the tumor burden, BRAF-MEK seems like a logical starting point if she is BRAF positive.  You can look to move to ipi-nivo following a reduction in tumor burden.  I wouldn't go crazy with diet.