WithinMySkin

I’m so so sorry to hear about your husband’s progression. This disease is awful. Sending love and prayers to you, your husband, and your family.

Lauren

I only made it through 2 rounds of Ipi/Nivo (about 3 weeks time) before I had gastritis, colitis, and high liver enzymes. Same as you, I went on steroids. I had an in-transit in my leg the size of a golfball that they purposely left so I’d be considered unresected stage 3C, my insurance would approve the treatment, and my immune system would have a blueprint to attack. I literally saw the in-transit melt away in week 3 before the side effects started. Normal treatment would then be Nivo alone, but my onc didn’t want to risk it since I responded so quickly. NED for over 2 years now, 3 year scans coming up in July (fingers and toes crossed for clean scans!!) So yeah, a quick body response is a good sign in my book!!

Health and happiness,
Lauren

I’m so so sorry to hear about this! If they think that surgery is the best treatment option, you REALLY REALLY need to search for a good neurosurgeon. I know its scary and it’s hard to know what to look for in a neurosurgeon, but I work with them daily and much like oncologists, they are NOT all equal. If you have any questions, please email me at Lauren@withinmyskin.com

Wishing you health and happiness,
Lauren

I know you were hoping for better news, Mark, but I think that ‘stable’ is great news! No side effects and stable is sometimes the best we can hope for. As the immunotherapy saying goes – “Be patient with the patient” and give that Nivo some time to start kicking in! Sending internet hugs (and a beer) your way!

Lauren

A PET CT scan is two types of scans in one sitting. A PET scan uses a sugar drink and a radioactive tracer that ‘lights up’ at high levels of uptake, ultimately showing high metabolic activity (which cancer is known to do). The picture quality is poor on this type of scan, but it shows metabolic activity which is very helpful to spot cancer. A CT scan, however, does not show metabolic activity – it shows a detailed picture of the body. So the two together help medical professionals know where to look (what lights up on the PET scan) and see a detailed picture of what it is that they are looking at (the CT scan).

Cancer cells can only be found once they have reached a certain size and if they have high metabolic activity. I believe the magic number is 2 mm, but some things I’ve seen online say 8 mm in size to be detected. If there is something seen that is small (like your lung nodule – which is very common to have even without cancer, by the way) then most doctors like to watch and wait. If it goes away on the next scan, then it was just a normal nodule and nothing to worry about.

Hope this helps you. Health and happiness,
Lauren

Oh my goodness, friend – sending ALL the internet hugs your way!!!!!

Lauren

Crossing my fingers for your next clean scans! Warrior on!!!

Lauren

I’m sorry to hear that your biopsy came back melanoma! This board is an amazing place for info and you can go back through years of stories and advice. Things are ever changing in the melanoma treatment world, and there are TONS of new and better treatments out now. So deep breath.

Usually anything deeper than 1 mm is cause for the lymph node biopsy. Some groups even use 0.8 mm as their cut-off depth. There is never any way to tell from the original biopsy results whether it has spread or not – some things (like greater depth or ulcerated or a high mitotic rate) tend to bode for a greater likelihood of spread.

My biggest suggestion (and everyone here will echo it as well) make sure you are seeing a team specialized in melanoma. Many dermatologists and oncologists will list it on their resume, but there have been so many advances that you really need to be seeing a specialist. Keep us updated on the news from the derm!

Health and happiness,
Lauren

It's so nice to hear this update, Jenn! I know you've struggled with joint pain for years now, and I'm so glad you finally found something that works for you!!! My husband and I went on an elemination diet to find his triggers for acid reflux, and we found sooo many weird foods that would set him off and he finally got off the meds! It's worth exploring diet to see what works for you, your body, and your situation. Congrats to you and hope you stay pain-free and NED!! 

Lauren

Today is my 4 year cancerversary as well, so I feel ya. The emotional roller coaster makes my head spin. I'm grateful and sad at the same time. But at the end of the day, we're still here and kicking!! We can only do the best we can with what we have. Every day is a blessing!!

Health and happiness,

Lauren

The side effects of immunotherapy are intense. I only got through 2 of my ipi/nivo combinations before the colitis/gastritis/liver enzymes went crazy. But getting control of the side effects is important before they totally ruin your life! Every year, more and more therapies are coming out of trials and there are TONS of options now compared to just a few years ago. Hang in there – get your strength back – and there will be more options IF you need them. One day at a time, my friend!

Lauren

Amazing news!!! You're such a fighter and such an inspiration, Tex! Warrior On!!!!

Lauren

It sounds like you found a doc who listens and you’re willing to advocate for yourself – two HUGE things!! Even if we don’t know what questions to ask, a good doc will lead you down the path of what you need to know. And advocating for yourself is the best thing you can do for your own body. It sounds like you are being extra cautious outside, so one thing to think about is getting your Vitamin D checked. Low levels of Vitamin D are linked to worse outcomes in melanoma (and fighting cancer in general). A simple blood test will help guide you and your supplement regimen.

Health and Happiness,
Lauren

We're all rooting for you, Celeste!! Praying you have clean scans at the end of the month!!

Lauren

A punch biopsy is always best for melanoma. It may also help with it being on your hand – an open shave biopsy would be difficult to keep covered while it's healing.

Lauren