Ridingaroundwith27Jennifers

I worked through as much of my treatment as I could.  Luckily, my job allowed for me to work from home which allowed me to stay off of medical leave for longer.  There was a point when I had to stop working and take medical leave.  If your employer is flexible and your job allows you to work from home I would definitely explore all the options.  I'm lucky to work for a great company and they really worked with me to help as much as they could.  I was very open and honest with them and communicated my treatment plan, possible side effects and realistic expectations of what I would be able to do.  Being on long term leave or unpaid leave can make it difficult to make ends meet.  I think it's difficult to know ahead of time.  Do what you are able to and when you feel you need to back off and take leave you will know.

Good wishes to you,

Jennifer

Hi,

I haven't been in your shoes.  I'm the patient, and a scientist, so I went for the ipi/nivo combo without hesitation.  It's not easy being the caregiver and wanting to ensure your partner has the best care.  If all the alternatives were really so effective then no one would be dying from this disease.  

Since being diagnosed I've heard all kinds of things.  Sugar will make the cancer grow.  Eating only vegetables will make the cancer go away.  Eating more salt will cure me.  Dancing naked in the Swiss Alps during a blizzard will cure me. I went with science and I went from stage 4 to NED.  It wasn't easy and I've been through a lot but I came out the other side. Maybe tell my story.  

I was a very healthy person, always wore my sunscreen, ate a healthy diet, didn't drink too much, no drugs, not a smoker, ran half marathons.  

I'm sure there are many who don't agree with me but I don't so much care what people think of me anymore.  I wish you both the best.

Good wishes to you both,

Jennifer

Yes!  I absolutely would.  I'm still on it.  I started with the combo Ipi/Nivo and only tolerated 2 doses.  I was off treatment to deal with the side effects from that when I experienced a brain met.  I ended up back on the Nivo and I'm still on it two years later.  My side effects have only been fatigue, mild itching (controlled with Zyrtec), and loss of thyroid function.  The doctor's are telling me this saved my life.  The side effects for me with Nivolumab (Opdivo) alone are not so bad.  So I'm tired – that's better than dead.  So I take a thyroid med, it's a tiny pill once a day – that's better than dead.

Good wishes to you,

Jennifer

I had success with 2 small brain mets.  I only tolerated two infusions of the ipi/nivo combo before I had severe hepatitis but those two initial brain mets did go away completely.  While off treatment I had a third brain met appear and it was quite aggressive.  That one was removed via craniotomy and then I had post op targeted radiation and nivo.  That was March/April 2017 and since then MRIs have been clear aside from some radiation necrosis.  

I know it takes a bit longer to see the brain mets shrink with Ipi/Nivo so try not to get discouraged if they don't disappear immediately.

Good wishes to you.

Jennifer

Hi Jesse,

I also had a brain met which was resected followed by targeted radiation and Opdivo.  My craniotomy was March 24th 2017 and I started radiation and Opdivo April 10th.  My MRIs have showed some radiation necrosis but nothing else and that is stabilizing.

The radiation oncologist had said that the clinical data of radiation with Opdivo was very promising.  In my case it certainly did the trick.

Good wishes to you,

Jennifer

Haven't had this happen but please have it checked out ASAP.  I had an abnormal mole biopsied and removed twelve years ago, clear margins and then 2 years ago out of the blue was stage IV.  

Good wishes to you,

Jennifer

I'll echo the other posters here and say please push to get the results.  3 weeks is a long time to wait for scan results.  You and your husband should search out your own specialist.

The other thing – try not to worry yourself sick.  My oncologist was really great with me – saying, we don't know if it's cancer until we get the results.  We don't worry until we have something to worry about.  That was the best advice ever.  

Good wishes to you both,

Jennifer

Hi Mike – 

Glad you are feeling better.  I hope you continue getting your Opdivo.  I'm having scans tomorrow and may get the OK to stop Opdivo.  I might be losing my safety net.  It's a liitle scary but it's progress.

Good wishes to you,

Jennifer

Hi Nicole,

The mental part of this diagnosis has been the hardest part for me.  Deflated – OK but defeated – never.  You've got this and you can and will balance doing your best for your daughter and dealing with where you are with your cancer journey.  A good friend asked me just yesterday how I'm dealing with working, family issues (there are quite a few), parenting, caring for an elderly parent and my melanoma.  The answer is that I just do it.  I don't have any other choice so I do it.  You are overwhelmed now but you are going to do this and rock the heck out of it.  You will do it with style and grace and people will call you amazing.

Vent/rant here anytime.  We are your people.  We get it.  My path has been different so I don't have any advice for you on what questions to ask.  My girls are 7 and 12 so I don't have any parenting wisdom for you. I try to prioritize and then deal with things in that order.  Of course it changes daily and sometimes my plan goes completely out the window.

Try not to worry too much until you meet with your oncologist.  

Good wishes to you,

Jennifer

Hi Mike,

I've been away from the board for a while.  Had to work on some things but enough about me.  Chin up.  You've got this.  Hang in there.  Just thinking your are going to have to change your tag line (maybe something like I'm Mike and I've kicked Mel's butt.)  

Just wanted to say hello and hopefully boost your spirits a little. 

Good wishes to you

Jennifer

Wonderful news!  Happy holidays!

Good wishes to you,

Jennifer

I haven't had any swelling.  I'd definitely call the oncologist.  Don't wait until Jan 2nd.  It's important to report any and all side effects swiftly.

Good wishes to you,

Jennifer

Hi Mark,

I went back on nivo after complications from the ipi/nivo combo.  I only had two combo infusions.  I've been OK on the nivo alone for over a year.  I was worried about repeat side effects and my oncologist said about 50% of people have them.  The other thing she said was that there was no way to tell who would be in that 50%.  

Everyone is different and every situation is so different that it is really hard to give you any advice other than don't let fear make the decision for you.  Weigh your options and talk them through with your doctors and then  choose your path.

Good wishes to you.

Jennifer

Good wishes to Mike!

Sending good thoughts.  I hope your scans go well.

Jennifer