My very good friend has recently been diagnosed with stage 4 melanoma and a bone biopsy came back positive as well. Her treatment thus far is Opdivo in a bi-weekly IV and pain mgmt - fentanyl patch and oxy. Also taking steroids. Besides the obvious, these are my concerns and questions for those of you with cancer treatment knowledge:
Her oncologist is located in her town of Frederick MD. He went to medical school in Romania. I really feel she needs to seek a higher level of medical care at one of the best cancer hospitals in the nation. She likes him, he is very nice. According to her, he has said her stage 4 melanoma is “100% curable”. I have no idea what he really said or if she confused treatable and curable, but from what I have read, Opdivo is a great new immunotherapy drug, too new to have 5 year survival stats, but the survival rate so far is 40%.
She does not want to do online research and she is choosing not to ask too many questions.
I have no idea how they are going to treat the fact that it has spread to bone - that is new info from this week.
Do I try to convince her to seek a second opinion from a specialist at a major cancer center? Or do I just support her in that everything is going to be fine?
She is divorced and has no siblings. Her obly child llives in CA. Her aunt and cousin have been helping her by taking her to dr appts, but I have heard no mention that they want to seek a second opinion.
Hopkins for a second opinion. Stat. My docs had no problem with me going to JHU for a second set of eyes when I was diagnosed. At least in the leukemia practice, they’d see early stage folks for a consult, recommend a battle plan, and have it implemented at the local level. For more advanced cases, they’d handle day-to-day at JHU.
JHU may propose the same treatment protocol, but be aware that they don’t always jump on the latest/greatest drug. Optivo was developed for lung cancer – this is the first I’ve heard of using it for melanoma. Has her doc put her in a trial?
With stage 4, I wouldn’t wait around, unless she decides she doesn’t want aggressive treatment that will affect her QOL. Getting another POV may help her understand and embrace her decisions.
Using it for stage 4 melanoma seems pretty new. Info below. I am going to suggest she try JHU. She seems to be in complete denial and while positive is good, denial is going to hurt her chances, IMO.
“The immunotherapy drug Opdivo (nivolumab) is now approved for several cancers that are metastatic (such as lung cancer, melanoma, and more), and has resulted in responses previously not seen with these advanced cancers. The drug works, simplistically, by helping the body’s own immune system eliminate cancer cells. Unlike chemotherapy, Opdivo targets cancer cells specifically, and often has fewer side effects than traditional chemotherapy drugs. Common side effects include a rash, electrolyte abnormalities, and inflammation in a number of different organs. Let’s look at the mechanism of action of Opdivo, when and how it may be used, potential side effects, and how doctors are attempting to learn who will respond best to these drugs.”
It’s good that you are trying to support and help your friend. A couple of things: She might not be in denial (or complete denial). What she is presenting to you and other folks might not be what she is thinking and feeling. Also, trusting and liking her doctor might be a few of the only things keeping her functioning right now. If you do encourage her to get a second opinion, I suggest that you not say, “You can’t trust your doctor. He went to school in Romania!” Instead, say something like, “Lots of people in your situation get second opinions. Would you like me to help you set something up?”
My concern with the present oncologist is also that he is not a melanoma specialist. I would think with stage 4 melanoma, you want a specialist rather than a more general oncologist.
Her mother lives in Boston and Dana Farber has a melanoma center, they will even do an online 2nd opinion - she would just have to send her records and test results. No drawback to doing something like that?
I just think she is minimizing the severity of her situation.in part because she believes her present dr has said her cancer is 100% curable.
I’m simply weighing how best to support her - by agreeing with everything she says and being as positive as she is, or by disagreeing and suggesting a second opinion, without knocking present dr.
This is the reality that I see:
“Our researchers have revealed striking results of an immune system-based therapy drug called nivolumab for patients with metastatic melanoma, achieving a three-year survival rate of 41 percent.”
If those were my odds, I’d make sure I was getting the best treatment possible, not the most convenient local option.
I agree that seeing a specialist might be a good idea and that your friend might be minimizing the severity of her situation. But recognizing the severity of her situation might be more than she can handle psychologically right now. It’s certainly a fine line for you to walk. Do you think she’d let you accompany her to her next appointment? That way, you could learn more just by listening and your friend might decide she’s comfortable with you offering some suggestions that so far she seems unprepared to hear.
I think you have to respect her boundaries. As much as you desperately want to help, ultimately the decisions are hers to make. I probably would suggest that a second opinion is always a good idea for a serous diagnosis, and it isn’t a reflection on her current physician (and that he wouldn’t see it as a negative). I’d suggest a couple places luke JHU.
I don’t know if you know her health insurance situation, but her insurance may not cover those other locations, so cost might be a concern.
Bottom line - you can suggest and offer to help. But you can’t decide for her, and you need to be respectful of her autonomy.
“JHU may propose the same treatment protocol, but be aware that they don’t always jump on the latest/greatest drug. Optivo was developed for lung cancer – this is the first I’ve heard of using it for melanoma. Has her doc put her in a trial?”
Opdivo (and a similar agent Keytruda) is now the standard of care for unresectable advanced/metastatic melanoma. So, any informed doctor will likely recommend the same treatment. Overall response rates to Opdivo as the first line of therapy are 30-45%. If Opdivo fails, combinations with other agents increase the responses to 50-60%, albeit with higher toxicity. And surgery is obviously not an option.
ETA: she can also get tested for BRAF mutations to see whether she is a candidate for therapy with BRAF/MEK inhibitors (similar/slightly higher response rates as Opdivo, but less durable responses). So, this may be the reason to get the second opinion. Yet, I would recommend Opdivo if this was my own friend. She should obviously listen to her doctors - not me or other posters
I’ve been treated for colorectal cancer for almost twelve years. My theory is the minute cancer becomes a stage four it’s time to get a second opinion. I had three opinions when I became stage four and at that time I chose to change my treatment to be done at MSK in New York. I went from Lahey Hospital in Massachusetts. MSK probably saved my life. They reviewed my medical records remotely and advised me as to what they thought my treatment should be. Since it was a more aggressive approach than what I was currently doing I opted to change my cancer center. I also think major cancer centers are much better equipped to handle stage four cases since they see so many different cases. I think if I were her I would send my records to Dana Faber. See if they have a different plan than what she is currently doing. Take it from there. I wish her the best.
We don’t know your friends relationship with her mom, her mom’s health, or whether your friend works. But if the circumstances are right, how about suggesting that she think about temporarily moving in with her mom for the company while she’s sick, and get treated at Dana Farber. If she’s taking sick leave from work, this could be a rare opportunity to spend time with her mother.
From what you’ve said, it doesn’t sound like your friend would be receptive to hearing anything negative, so I was trying to think how to get her to a specialist and cloak this as doing this for another, positive, reason.
When my husband was diagnosed with stage 3 esophageal cancer we (well I) quickly realized we needed to go somewhere other than the local oncologist (it helped that he was truly clueless about that particular cancer and everything he said ran opposite to everything I had read as I researched the disease). But it was incredibly overwhelming so when my best friend, who lives in Houston, said “you’re coming to Houston and Staying with me and going to M D Anderson” it was actually a huge relief to have someone tell me what we should do.
I wouldn’t hesitate to suggest she gets a 2nd opinion. She is probably overwhelmed. If she is adamant she doesn’t want to then be supportive of whatever she decides, but at least put it out there.
I’m so sorry your friend and you are going through this, @rockvillemom. Take care of yourself, too. I know your life has been plenty challenging recently.
Hi - my best friend was diagnosed with stage 4 melanoma in 2015. It is not easy and she has faced lots of complications including the cancer spreading to other major organs, a secondary diagnosis of lung cancer, lung removal surgery, chemotherapy, a variety of targeted immune therapies, multiple major brain surgeries (and laser brain surgeries), in patient rehabilitation, impaired walking, etc. She is 42 and fights melanoma everyday with everything she has got.
She wouldn’t be here if she didn’t have the support and excellent care of NYU. We are lucky to live in large city with first class medical institutions and doctors. It is been a real eye-opener to see the many twists and turns and complications she has faced. The quality of the doctors and medical care she’s had has let her lead a very good life since the diagnosis and between treatments
I have met other melanoma survivors and patients through her - there are many new therapies and drugs related to melanoma and my observation has been that it is critical to have a doctor and an institution that is up to speed and aware of all the latest studies treatments and clinical drugs available. I would absolutely, 100, encourage your friend to get a second opinion at a large institution. My friend has also gotten a lot of support through the Melanoma Research Foundation.
My very best wishes to your friend – it’s not an easy path but there are definitely options, support and always, hope.
Sending ones records to be reviewed seems to be commonplace. Your friend may not need to move to Boston, but getting her records reviewed seems a no brainer.
I know I was in shock when I was diagnosed with melanoma in my early 30’s. I couldn’t even read the articles my oncologist gave me. However, if I had a child then, I would do,everything I could to survive and get the best treatment.
Sorry! Just have always seen Optivo and Keytruda for lung cancer (darn TV commercials).
For others commenting on places to get treated, JHU is about 30 miles from where OP’s friend lives. If she can get her insurance to cover other cancer centers known for treating melanoma, that would be great. If she has the energy or willingness to get online, there are likely melanoma listserves/private FB groups that can offer specific comments about various hospitals. I was active on such lists for years for my flavor of leukemia. I found out about new drugs in the pipeline, trials, who to see (or not), and got a lot of encouragement from others who were on the same path. I’m big into research, though, and OP’s friend doesn’t sound like she is ready to go there.
One of my closest friends got a stage 4 cancer diagnosis, and got a second opinion partway through her treatment. I think it was done remotely. Turns out she did not have stage 4 cancer, but a lower stage.