Melanoma treatment and adverse events

@birdman518. Good morning, Mitchell. Cancer is a frightening diagnosis. And you’re right, the treatments for Cancer are frightening.
Your comment, “ Am I wrong in thinking that doing this to patients is crazy? Are people so desperate to live at *any* cost that they allow this to be done to them?” The answers? Simply put, Yes and Yes

However, there’s more to this. First, until something better comes along like a magic wand or a huge breakthrough in cancer treatments, where we have the ability to kill fast growing cancer cells without collateral damage, we’re needing to use what we have available to us now.

Cancer doesn’t play fair, it doesn’t discriminate, doesn’t care if you’re wealthy, poor, educated, etc.. It has no boundaries. Our oncologists are doing what they can to treat our cancers with the ammunition they have.
They’re not doing this to us! They’re doing it for us. There’s a difference and it’s important to keep that perspective. Are we cancer patients crazy to allow these drugs in our bodies? You bet! But if we want any hope for a future, we take what we can get.

I can tell you unequivocally, I would have been dead 4 years ago without the barrage of lethal chemo meds to rid my body of Acute Myeloid Leukemia. That aggressive cancer started right in the heart of my immune system…my bone marrow.
Here’s a partial list of my therapy: Cytarabine, idarubicin, fludarabine, melphalen, methotrexate, midostaurin, sorafenib, rituximab, then a host of broad spectrum antibiotics, antifungals, anti-virals, anti-rejection meds, and the list goes on and on! Was it worth it for what I endured at the time? You bet. I chose to fight because for me, like many of us when we get the opportunity to choose life or death, we take life every time…mostly, because it buys us precious time!

I’m 4 years post cancer/bone marrow transplant. My 4th ReBirthday is coming up in a week. I feel incredibly healthy and eternally grateful to my doctors and medical teams for doing what they could to save my life and to give me a second chance at life. I’d do it all over again!

I’ve read through some of your past replies and see that you had melanoma before but it was localized, lesion removed and nothing more was required except I’m sure you were told to avoid sun exposure, etc.
Now you’ve had a recurrence and there’s concern it has spread. I can imagine this is causing a little anxiety because there’s now something potentially threatening your life for which you don’t know the outcome. My suggestion is to stop looking at the black box warnings because they can scare the life right out of you…but the meds in the box can actually restore it for you.

I wish only the very best news for you tomorrow and not faced with the difficult decision to take these meds. But if you do, just know there is life on the other side of these treatments. They serve a much needed purpose. ☺️

Lori, thank you for your thoughtful reply! Although I do not really feel distressed (disappointed, perhaps?) I am sure that plays a role.
You mentioned what you went through. Is is over? Do you still take drugs related to your cancer, and if so, do you still endure side-effects? Can you travel, for example? That is a big item for me because I have the money and planned to do a lot of it while I still can (i.e. that was before recurrence).
I will go tomorrow for my first visit with my new oncologist, and I will listen to what he has to say about my concerns.

Hi Mitchell, believe me, I’ve been where you are with the disappointment that my body let me down! I did everything I could all of my adult life to avoid cancer…but a blood cancer never, ever entered my mind! I seriously had no time to think about it because I was rushed to the hospital and started treatment ASAP. If I’d had time to look up the meds, I’d sure I’d have been backpedaling as fast as I could. 😅 But there was no option…treatment or the final curtain bow.

To answer your question, my cancer journey is over. My hematologist/oncologist and transplant doctors feel it is. I have a new immune system from an anonymous donor because mine was defective, not from treatment but from the cancer itself. I am 4 years in deep remission, no sign of cancer cells or relapse. 5 years clean is generally the benchmark for ‘cured’. But we’re pretty confident that this is success story.
At this point, except for Covid lurking out there, my life is 99% normal. I’m 69 but have the energy of a 20 year old. I walk extensively daily, exercise, travel, garden (with a mask) and really feel as though nothing happened. However, my immune system will never be as robust as the factory installed model so I still do wear a mask in stores or gatherings, I don’t eat in restaurants and focus on extra sanitation measures. But other than that, I’m on no medications and living life to the fullest.
Have to admit, at the time though, going through the treatments there were days when I couldn’t imagine a body enduring that treatment and coming out whole! But, as we joke in our house, “better living through chemistry”… Big pharma gets a bad rap. All the research and science behind these medications is incredible and they work!

A friend of mine had kidney cancer. It metastasized to her lungs and brain. Her defective kidney was removed, brain lesions zapped with gamma knife radiation, and her lung cancer treated with the biologic, Opdivo. That was 8 years ago! Opdivo didn’t destroy her immune system. It ramped it up to attack the cancer cells in her lungs. It all worked!
8 years later, that friend, who just turned 70, bikes 20 miles daily, cross country skis, kayaks, hikes with me, does all her own yard work, drives/flies solo trips all over the US, etc.

When diagnosed, her local oncologist told her to get her affairs in order because ‘this will take you out.’ She didn’t take that answer and sought a second opinion. The new doctor felt he could take this on with a better outcome. These aggressive drugs and treatments worked with no ill longterm side effects.

She and I were both willing to take the chance with these meds. Can there be consequences down the road? Maybe? But she and I took the risks and are now enjoying the heck out of the second opportunity to live our lives. There’s something very empowering about overcoming the formidable adversary of cancer.

If you do require treatment, it can be a bit of a setback in your immediate plans to travel but always look to the future! This will be a little detour along the route but there’s a lifetime of journeys and adventures ahead of you. (Yes, I am always this perky).

@birdman518 I echo what @loribmt has said. She put it into words so eloquently, and yes, she really is just that perky!

We each decide what we will bear and agree to, and like the donkey with a carrot dangling in front of its nose, we plod on, eyes on "the prize" of life. That sounds very simplistic, doesn't it? Remember the blackbox warnings and all the cautions are normal to see, but not very normal to experience. Each patient is different. This is where we can see what may work for us, what combination is going to be just right.

Like you, I had melanoma, back in 2008, on my right forearm. It's a really gnarly scar, 32 stitches! Since then there have been several types of odd skin cancers that required several surgeries. That is not as scary as the incurable blood cancer and endstage renal disease I deal with now on a daily basis. I take medications that help keep me alive and kicking. Sticking my toes in to delay the final countdown. Do I wish differently? You betcha. Am I up to the challenge? Again, you betcha!
Ginger

You raise important questions here. I don't think life just for its own sake is much of a value for me. I spent many years caring for aged parents and in-laws with dementia and very restricted lives. Frankly I would not do difficult and painful treatments for more of that "life." However, treatment, risk, evaluation, and values are up to each individual. And thank goodness--because we are not all the same. I find our society has an almost pathological fear of death--I'm guessing more so than a century or two ago when medicine wasn't as advanced and perhaps folks were more accepting. I try to respect the choices of others and hope they'll respect mine. My radiation oncologist called me a "minimalist"--and I appreciated that he could see, and actually accept that. For breast cancer I had 3, not 6, weeks of radiation. I'm satisfied with the course I took, and will continue to be moderate. It's not so much anxiety about side effects, but trying to be realistic about the "cost" of treatment versus outcome.

@mir123, I like your expression "minimalist"... and "moderate". Today is my first visit with my oncologist, so it will be an interesting day!

Good morning, @birdman I hope all goes will with your appointment today. Do you have your list of questions?

I have quite a few, but I expect and hope that today I will be able to just listen to their diagnosis and prognosis. My main question is whether or not they will offer surgery to remove the swollen lymph node.