Treatment Disagreements

Hello and sorry for what you have gone through, being the person without cancer is harder than it seems.  I can speak directly to your post as I've had a similar experience.  While my husband doesn't believe in alternative therapy, he just believes in no therapy, mainly for economic reasons and a bit of distrust of the entire medical system.  he will read the information about over-testing and I have to explain that THAT doesn't apply in his case.  He was diagnosed Stage 3c or 4 originally (his case was tough as they couldn't find a primary, but considered it metastatic melanoma and was quite large with high mitotic rate, etc).  He was offered several treatment options after surgery at MD Anderson but decided on wait and watch.  If it had been my choice, I would have taken the risk/reward of the treatment.  My husband, as a supply chain person, truly doesn't see it that way, he doesn't understand why you would "pay" for something now for an unknown benefit in the future.  Very different mindset.

I'm involved in clinical research so the idea of not doing anything was really tough. We are literally known to Dr. Amaria as the couple who argues in the doctor's office.  I have my list of questions, treatments, clarifications, journals, research articles etc and my husband really just wants to get back to work.  He went to work the day after his surgery when he had a humongous scar the length of his back.  Dr. Cormier told me to just let him go back to work, that is what he needs.  She was right, I had to just let him go.  I fell in love with him because of his strong work ethic and never complaining about work, so I've had to accept that now as well. 

My fear is that if he does progress, he will choose no treatment because he truly feels like he would be an economic burden to us.  But I've had to present to him a 20 year economic plan that he is worth more alive (salary, etc) than he is dead, ridiculous but true.  It is exhausting and I find the battle of worry about having him choose treatment more exhausting than the battle with the disease, because really I just love him and want him to be around for me and our daughter.  I don't want our 11 year old to lose her dad when it could have been prevented.  I'm jealous of the people who have spouses that have dived into the research and advocated, but it is what it is.  In his own way, he truly believes that he is saving us grief by not talking about this stuff, but I've had to respectfully disagree with him.

I have to admit I've gone as far as shaming him to be proactive, I did this with my dad too when he was completely non-compliant with Progressive Supranuclear Palsy which is in the realm of Parkinson's (I brought out the big guns and told him my beloved departed mother and his beloved wife who he missed dearly would be quite disappointed in his behavior). So i've been the adult child that broke down in tears to get her Dad to care about his treatment.  It's not pretty, but as the person who loves the person with this disease, we get desperate at time. 

It's hard, i wish I had more advice for you.  My sister works in a hospital setting as a hospital chaplain and she understands that everyone deserves their own dignity and choices.  It's just hard being the person with no control, I would choose differently for sure, but I'm trying to respect that it is not my decision. But everything in me wants to just grab him by the lapels, shake him and say, are you kidding me??? Do you not get this????  But i've refrained so far from taking the Bobby Knight approach to this 🙂

As an evidence-based clinical research manager and medical librarian, I have to go with rigorous science and proper trial design to be able to accept conclusions from any study, alternative or traditional.  I'm glad he agreed to Nivo, that is a huge victory for your family but know that I understand the cost to you for having to fight this battle to get him to treatment.  It is exhausting.  Many hugs.

I had 7 tumors in my lungs. The combo took care of all 7, no surgury or radiation and I have been NED since August of 2017, last Opdivo was August 2018.

Here is my take on cancer spas- they are there for your money only.  The ‘success’ is not evidenced based.  People go on and on about the Medical and Pharmaceutucal establishments but will shell out thousands for unproven snake oil.  It’s all anecdotal, I reviewed and totally for profit.  

Cancer is one word for hundreds of diseases with different biology   Anyone who claims they cure all cancers is a criminal in my book  

Doesnt anyone remember Laetrile? 

Nivo/ipi will Use his immune system to fight melanoma.  What’s better than that? 

Hello Mrs. Bailey,

My name is Becca, and I am the patent in this horrible war against Melanoma. At 27 years old, I was diagnosed with Stage IIIa Melanoma on June 6, 2018. I had a WLE and removal of two lymph nodes positive with melanoma. I started Opdivo last August, once every four weeks for thirteen rounds. I had a spot appear off of my first scar in January, which was stage Ia, and thankfully was a second primary and not a recurrence. If everything goes to plan I will receive my last treatment June 28th! I wanted to give you my background before addressing your concerns, because in this case I was for my treatment, but being pushed in another direction.

I have always believed that I should do my best to give nature the chance work with my body, rather than introduce chemicals to the situation. For me the side affects of chemicals on my body tend to be worse then what they are treating. That being said, I have always backed going to the doctor, and taking medication as necessary, if nature can't get the job done. I am also behind vaccinations 100%. Science is a wonderful thing! My Grandma is a different story.

She is a devout Catholic, while also the biggest advocate for alternative medicine I have ever met. When she found out that I had melanoma, she began flooding me with this research about how cancer is caused by fungus, and that Mega doses of Vitamin C are the best way to treat it. She came to this conclusion because of one person's experience. He fought Melanoma very aggressively in the 90's and had little success with it. Once he gave up the chemo and radiation (which we know isn't the best for melanoma anyway) he started huge regiments of Mega doses of Vitamin C. This seemed to cure him entirely. When I asked her for other examples of this while also having a low rate of recurrence, she couldn't find any reliable sources. She tired to explain the damage I would do to my body, and that I would be making a huge mistake if I listened to my doctor. This truly had me torn. I have always had the deepest respect for her, and have always taken her advice very seriously. The moment I told her that I was going through with my treatment, she had such a solemn look and told me that she loved me and hoped that I was making the right decision. This was the moment I had to realize we both felt that each others way to treat my cancer felt like a death sentence for me. It was extremely hard to get past, especially since I do tend toward natural remedies first, and she knew that. 

Anyway, I don't necessarily know how you feel, because I'm not fighting myself, but I know how hard it is when the people you love want the treatment to be drastically different than you do. I hope that your husband realizes how important he is to all of you, and that he gives his doctors more of an ability to guide him through his journey. 

Much love,

Becca

Science based alternative/complimentary medicine is fine,  There are many homeopathic approaches that aid in the care and comfort of cancer patients; but not one of those approaches is a substitute for science based treatment.

Conspiracy based bullshit like ozone therapy (among others)is nothing but people preying upon people for money.

I would suggest that you set down with your husband and reduce to writing his living will, advance directives , the terms he wants to die, how long and under what circumstances he wants his life artificially  sustained , to what extent he wants to be revived, and who will be his legal representative  (medical power of attorney) in the event he is unable to make a decision.

Lame as it is, It is his chance and therefore his choice.

There is no need to argue the point with him, but insist on doing due diligence.

Charlie S

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

Hello dear,

I am sorry that you and your husband has to go through this. I am a caregiver too, so I understand how difficult it can be. 

First of all, your husband is so so lucky to have you by his side 🙂

Second, let's just agree that cancer and cancer medicine have gained a terrible reputation over the years. Having been through this with my mom for over a year now, I relized that reality, with all its challenges, is much much better than the horror stories we've heard throughout our lives and watched on TV about cancer treatments. 

So, I understand the amount of fear that your husband is probably experiencing now, which created so much resistance to cancer therapies. 

Thus, my suggestion would be to get him to talk to actual cancer patients and cancer survivors, they can bring a whole new and much more accurate prespective to the experience of undergoing cancer therapy, both the physical and the emotional one. 

This way, you will give him more reliable information based on real experiences, to make up his own decision with utmost clarity. 

Good Luck, 

S.