MD Anderson is fabulous. Swimcatsmom has experience with them. They are on the short list for my flavor of leukemia. If they have affiliates in Frederick, bingo. Still think Dana Farber is a good option since she has family up there, and JHU is practically local as well.
You are a kind and thoughtful friend to her.
The OP’s friend has no money. How will she pay for traveling and getting 2nd opinions?
I have not read all the comments, but I was an oncology nurse for 13 years and a primary care nurse practitioner for the last 24. I my experience, the local oncology group, 30 minutes from Duke and UNC, is just as good, if not better than the large Universities. There is shared knowledge and standard protocols. My patients who have gotten second opinions for cancer at the major medical centers all find themselves back with the local oncology group as they find “the treatment is the same thing.” I suspect it’s similar in Frederick. If it was me, I would get a second opinion, but I don’t think it’s worth a battle and strained friendship.
Also, a friend had metastatic melanoma to the brain and he has been in remission for several years. Similar to Jimmy Carter. Melanoma is curable but it depends on a number of specific characteristics of the particular melanoma the individual has and individual responses.
Had a long rambling conversation with her last night. She is kind of manic - she is aware and says it is from the steroids. I do not think she is fully capable if making treatment decisions.
This Friday she has her 2nd Opdivo IV and also gets her first injection for the bone metasis - I know very little about that piece of her treatment.
She asked if she could adjust her work schedule to take a daily afternoon nap, and I said of course. The least I can do.
@GTalum - thank you for reminding me about Jimmy Carter. Not exactly the same situation, but close. Hus treatment also included radiation. A good example of there being hope.
"In August 2015, former U.S. president Jimmy Carter announced that his melanoma had spread to his liver and his brain. Several years ago, metastatic melanoma like Carter’s would have been untreatable. Fortunately, Carter’s doctors used a relatively new approach that combined immunotherapy and radiation.
First, doctors bombarded his tumors with radiation. The damaged and dying cancer cells likely attracted the attention of immune cells. Then, he received pembrolizumab, an anti-PD-1 checkpoint immunotherapy, to support his immune system’s response and help it to completely eliminate the cancer."
Steroids can do that…
My responses to this are all over the place.
Patient has no money. You need to be cognizant of how frigging expensive cancer treatment is, and to respect her insurance coverage and its parameters.
Your friend is in need of a case manager. Whether she asks you to do that for her, or her relatives, or she hires someone to take on those tasks, she needs someone reliable to attend all of her appointments, to take notes, to follow up with questions, to do the calling, the filing, the overwhelming paperwork, to be her wingman.
The least helpful “help” we were offered a year ago was from knowledgable friends (doctors, nurses, PA’s) who kept trying to “help” us find a surgical oncologist trained in the very rare procedure my husband needed for a very rare cancer. I know it came from a place of love. We also live in Maryland, many of our friends are in the medical field (my husband is also a physician), there are quite a few major cancer centers in the area, and everyone has an opinion. It wasn’t helpful to have people pushing opinions for specialists who didn’t accept our (excellent) insurance. We hit well over a million dollars in charges (based on EOB’s) in a month for the 12 hour surgery, ICU, intra-abdominal chemo and month of hospitalization. We paid zero because we played the game within our system. It does make a difference for our mental and emotional health that we have never seen a bill, or have had to fight for coverage. Fighting an insurance company during treatments is not good for anyone’s health. Work within her insurance system.
The statement about the country of origin of your friend’s oncologist is incredibly offensive, although I know that isn’t how you meant it. My husband’s surgical oncologist’s country of origin is a country in Africa. There are no fellowships that train for the proceedure he had done. It is too rare. But our oncologist trained under the surgical oncologist who pioneered the procedure. He graduated from a US medical school and US residency in surgical oncology, and went on to specialize with further training in this procedure. He is board certified. He is current, and trains, teaches, etc.
Be a friend, be there for her, be sure she has consistent support at every appointment. She needs another set of ears and eyes. Ask her what she needs.
A friend was diagnosed with stage 3 melanoma a year or so ago. Was treated with Opdiva, and has done very well. Showing no signs of cancer now and is done with treatment with just the usual frequently recurring scans for now. Tolerated the treatment exceptionally well. There’s hope at least.
I’m another to suggest seeking a second opinion or a team of doctors with access to specific expertise. It may confirm the current doctor’s approach and give her additional confidence that she’s getting the most appropriate treatment. As far as cost, most insurance has an out of pocket maximum.
@Parentof2014grad - That is very encouraging, thank you.
We are working to set up a system - and she has designated her cousin as the person going with her to most appts and taking notes and so forth. Another friend and I are going to research second opinion options, although she still does not see the need.
The day to day is difficult and HR is going to meet with her Wednesday re FMLA options. The steroids are preventing her from sleeping and her ability to work effectively is decreasing. But working means a lot to her, both in terms of living a semi-normal life and all of the support we are giving her. So, we’ll see. If she cut her hours further, I’d support. She will not lose her insurance.
You know what isn’t covered by insurance or capped? $4-12 per day in parking fees, gas, plane tickets, car rentals, hotels, food, procedures and treatments that aren’t covered by insurance for one reason or another. … It’s so easy to say that someone should seek care in Boston or NYC or Houston, when the reality is that for a single patient who “has no money” those are not always realistic options.
I live in a pretty wealthy area and have multiple well insured, well employed friends who are far, far in debt after years of cancer treatments. Sometimes here on CC it seems as though I’m the only one who knows anyone who has had financial problems as a result of medical issues.
I actually think there has been a good bit of discussion on cc - in some of the retirement related threads - about medical debt. Friend and I work in mortgage banking - medical debt is the number 1 cause of bankruptcy. I fully expect she will file bankruptcy before this is through. She has no assets - I don’t see many other options.
We raised $1000 for her last week through the sale of raffle tickets at our holiday party. Doing a company-wide “go fund me” type of event tomorrow. Maybe we raise another few hundred. Drop in the bucket, I know.
Seeking care at Dana Farber is not out of the question - if they have a better approach. She can take a train/plane to Boston and stay with her mother. I’ll buy the ticket. Not impossible. The Frederick hospital affiliated with MD Anderson would be viable also. I’m not suggesting she go to MD Anderson in Houston or Sloan Kettering in NYC - not realistic options.
Then, there’s the assumption the major medical centers will be better. If you want a clinical trial, you have to go where it’s offered. If you want the standard treatment, is there any data showing Dana Farber is better than the national average for her disease?
The latest wrinkle - should she work pt or use FMLA and take off for a few weeks?
Last week, she worked a few hours Mon and Tues. Wed. she took a sick day. Thurs she texted she would sign on at 9, then it was at 10, then finally around 11 I texted her that if she wasn’t feeling well, just take a sick day. She was adamant on Thursday that she wanted to keep working, she needs the money, she needs the distraction, etc. But really, she is on so much pain medication and so sleep deprived from the steroids, not functioning well.
Friday, she was just crazy - sent bizarre rambling email at 5am to me, our boss and HR manager. Then she reversed course, calling to say she thinks she cannot mentally work and should take a leave of absence. Which is fine by me, she just needs to communicate with upper mgmt and HR.
HR says they cannot force her to take a leave of absence. Our manager says if she does sign on, I need to document any mistakes she makes (just lovely).
Any thoughts on how best to handle this? I need her to make a decision and stick with it so I can get the help I need in her absence. If she feels like she can work 2-3 hours a day, fine with that too, as long as she is mentally capable.
She is seeing a pain mgmt specialist Monday morning and we are going to talk afterwards. She says after her first Opdivo treatment her tumors actually grew and that is causing the increased pain. She had 2nd Opdivo IV and xgeva shot yesterday. Does anyone know what to expect next?
Not sure if I should encourage her to take a leave of absence or encourage her to try to work a short amount each day.
Would she qualify for disability if she took a leave? From your other posts it sounds like she has financial pressure which is probably why she wants/needs to keep working?
No matter what, she needs to have the FMLA paperwork done.
I had disability through work which paid 80% of my pay & that could be supplemented with sick leave. I thought that I could work through radiation, but it was too much. I ended up taking over two months off. Having FMLA protected me and my job.
Getting SS disability may be possible with a stage IV diagnosis - she might need to be metastatic, though.
Is she using the services of the cancer center? There is often free counseling and therapy, along with support groups (if desired) offered. My sibs and I all used the counselors at various points in our cancer journeys.
I feel so bad for her; so hard to deal with it all. You are such a good friend.
“She says after her first Opdivo treatment her tumors actually grew and that is causing the increased pain. She had 2nd Opdivo IV and xgeva shot yesterday. Does anyone know what to expect next?”
How does she know her tumors grew after the first treatment? Medical imaging is usually not done after the first infusion. This could be real tumor growth, or inflammatory response to therapy, which would be beneficial. She may also be experiencing so-called “pseudoprogression”, when tumors indeed enlarge due to leukocyte infiltration and expansion, which is the actual treatment goal. Biologics (such as Opdivo) work very differently from chemotherapy or other small molecules. That’s why it helps to have an oncologist with hands-on experience with these new therapies, who can recognize the signs of real or pseudo progression of the disease, as well as immune related adverse events, and adjust the course of the treatment accordingly. Experienced oncologists could also steer her towards clinical trials, where she would continue receiving the highest standard of care and may also benefit from new therapies. Melanoma is at the forefront of immunotherapy development and new treatments emerge literally every week. She may be eligible for dozens of trials that test combinations of Opdivo (or similar agents) with new investigational drugs. Some of these combinations are already approved in melanoma, and they are more efficient than Opdivo alone.
She is clearly not in position to consider all these and develop a plan. It also seems that, understandably, lots of informations she conveys is inaccurate. I agree that appointing a case manager to communicate with her doctors, accurately document and record all information would be the best first step. Consulting with an experienced oncologist in real time, either directly or indirectly, would be a good next step. It should be clear within a few months whether she responds to Opdovo or not, and she needs to be prepared for the next step.
Research shows that patients frequently misunderstand doctors about cancer treatments. No doubt part is that doctors don’t always communicate at the level patients need, and part is that patients don’t want to hear that doctors are telling them the treatments are not cures, but in any event, patients often do not end up understanding their situation.
Put me in with the group that says the doctor never said the cancer was 100% curable.
HR manager is supposed to meet her at her home to go over FMLA and benefits.
I am going to see if I can talk to her cousin who is taking her to the appts to get a clearer picture.
This situation is complicated by the fact that she has no spouse or partner, no siblings and 1 adult son who lives in CA. Based on the decline in her communication I have seen the past few days, she is unable to make any decisions or pursue any options - medical or financial.
I really don’t see her returning to work, but she has to communicate that to mgmt.
What a difficult situation. Did they find the original lesion? My friend’s aunt dealt with this and they found the original tumor between her toes. Hoping for the best.
She should definitely see a specialist for a second opinion and to guide treatment. Her own oncologist shouldn’t object and can administer the recommended treatment. Best of luck to her!