Talking Frankly about Living with Advanced Cancer

@clayesq Welcome to Mayo Clinic Connect. I see you joined us a while ago and this is your first post. Being scared and uncertain is an awkward way to live each day, isn't it?

Like many of us here, I am a cancer patient. Malignant melanoma on my right forearm was removed 12/31/2008. In addition, I have had many squamous cell carcinomas surgically removed by MOHS procedures. Beyond that, I am a blood cancer patient currently on chemo, and a dialysis warrior with failing kidneys.

You ask what you are supposed to be doing to live with melanoma. My experience and thoughts: get your full body skin checks every six months or more often if you notice something. Wear sunscreen everyday. Minimize your risks. Live your life looking forward, planning your next great adventure. If you are still working [I noticed the JD in your profile], make it meaningful. Eat healthy but leave room for a binge. Exercise in moderation. Be grateful for the little things, and profoundly thankful for the big things. Smile, and project that to others. Make a difference.

What will you do with today?
Ginger

@ta8, how are you doing? You mention that you are concerned that she doesn't appear to be scared about your diagnosis. May I ask how old your daughter is? Is she your main caregiver?

Hola soy nuevo tengo 50 años y tengo cáncer de próstata avanzado con Gleason (4+5)9, estoy muy preocupado por saber que me espera

@lale2872 Welcome to Mayo Clinic Connect.

I am including a link here to go to a Prostrate Cancer discussion on getting help. When were you diagnosed with your prostrate cancer?
https://connect.mayoclinic.org/discussion/prostate-cancer-getting-help-questions-answered/
Ginger

Buenas noches , el diagnóstico fue en agosto de este año, me mandaron hacer una gramagrafia osea , la cual indica que no tengo metastasis en los huesos.

Hola buenas noches, en agosto de este año, me mandaron hacer una gramagrafia osea, la cual indica que no tengo metastasis.

Hello
I wanted check on you see that how are you doing.

Can you give update on your condition?
Thanks

@fmh1 I just saw your post. I have posted elsewhere here about my melanoma story, the upshot of which is that I was just diagnosed with it being metastatic (originally on scalp, now in neck lymph node(s)).
I just watched a video of Dr Seyfried on Youtube (only a few weeks old) where he explains his theory. I am going to try and find out if there is a way to find a doctor near me (greater Tampa Bay) that would implement his protocols.
Were you able to find anyone? I know that the FDA and Big Pharma have pretty much closed down all alternate theories and treatments, so I am guessing it will be pretty hard to find a doctor.
I wish you well!

about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it turned out to be Grade 3 malignant, which is very rare. Now I'm on every 4 months MRI to watch for recurrence. I just had MRI and am waiting to see results next week. I'm considering what I will do if there is regrowth. The original tumor was found when my husband forced me to go to the ER, where they discovered it on an MRI. The NS said it needed to come out right away, and it did, 4 days later. Then 6 weeks of daily radiation treatment. So my husband is very proud of having "saved my life". The problem is, I haven't done or experienced anything in the last year that I would have missed if I had died. I have no children or other family except my husband, who is toxic to be around all day. I don't like my life the way it is, and if this MRI isn't good, I may decide to refuse more surgery and let it take its course. My tumor is so rare that there is no information on survival rates, how long that takes, and what that time would look like. I guess I need to find a counselor I could talk to

My heart goes out to each and every one of you, and to your loved ones.

My beautiful loved one, known here as "Birdman518", passed away from a very rare form of metastasized melanoma to his very gifted brain, on Oct. 9, 2024, I do not have words to describe the depth of my sorrow. He was 68 years young.

My Birdie's first symptom that anything might be "wrong" was on Aug. 18, 2024 when he noticed a slight drool from one side of his mouth, as if he had had Novocain. We went immediately to our local ER, thinking maybe he had Bells Palsy. A CT scan revealed 6 tumors in his brain. The droop was, in fact, a stroke, from which, incredibly, he recovered and had no others (anti-seizure med and steroids).

I took him to Moffitt Cancer Center in Tampa where he was immediately admitted to ICU for more scans. After 4 days of this, Birdie asked for the truth, if ANYTHING they were proposing (MRI of the brain, mapping of the tumors, radiation of the tumors, brain surgery) was going to make his life better than it was "right now". One very honest doctor admitted that it would not, and that his type of melanoma was so rare they had no immunotherapy to try against it, although they were willing to "guess" and try "something".

He asked if anything they were proposing to do for his brain was going to address the tumor that was found in his liver. The answer was, "Not now".

He asked, "How long?" and was told by the very honest doctor, "You are unlikely to be with us in a month".

My Birdie told them that he was going home, where I cared for him with the help of hospice until he passed away 5 weeks later.

Things for which I am grateful, even in this terrible loss:

I am grateful that Mitchell was in my life for 42 years.
I am grateful that he did not have any pain throughout all of this.
I am grateful that it was not sudden death, so that I could process all of it with him.
I am grateful that he spent his last weeks with just the two of us and not in the hospital where the outcome would have been the same but much worse for both of us.
I am grateful to Mitchell that he trusted me to care for him and that he made that choice, although I would have stood beside him with whatever choice he made.
I am grateful for the support this group offers to each other in such a kind way.

I honor Mitchell by keeping on each day even with a broken heart.

My best to each of you,
Lauren