That’s great news! If she hasn’t already done so, I wanted to suggest she ask to be on a waitlist if anything opens up sooner than 1/14.
Good idea, will do.
She also inquired about the online second opinion program at Dana Farber that I had suggested, and unfortunately there is a $2000 cost and she said her insurance would not cover.
We are calling the melanoma center at Johns Hopkins tomorrow to see if they take her insurance and she may also go there for another opinion.
Interesting that after weeks of saying she was comfortable with her local drs and not wanting any other opinions she is now pursuing multiple options. Not sure what has changed - my guess is some of the shock and denial has worn off and she is processing the reality of stage 4 melanoma and bone cancer. I’m just happy she is willing to cast a wider net.
Good news in that she has decided to fight. Sounds like the reduction in steroids has also helped clear her mind.
Absolutely. She is sleeping 5-6 hours per night instead of 1-2 and thinking/communicating more like herself.
Re the waitlist at Stockman Institute: she can call every morning to see if anyone has cancelled for that day. You can bet that after a few days of doing this if there is a cancellation, her name will come to mind first to fill that opening. But only do this if she is able to take any appt for any time.
I’d like her to see the pain specialist sooner than Friday if possible
@rockvillemom I’ve been thinking of you and your friend. I hope things are more settled in terms of her pain and treatment. Any updates?
@surfcity Thank you so much for asking. It is still not going well.
The original team of an oncologist and then a neurosurgeon and pain specialist are still trying various ideas. She tried Lyrica for 2 weeks - not much relief and it made her legs feel like concrete blocks. One of them put her on an anti depressant - Cymbalta - and she hated the way that made her feel. The pain mgmt dr has suggested a nerve block and she has additional testing scheduled relating to that. She had scans done yesterday - waiting for results - to see if the 3 Opdivo treatments have made any progress in shrinking her tumors. She is still in tremendous pain and exhausted from lack of sleep. If she gets 5-6 hours in 24 hours, that is a great day, 2-3 hours more common. She told me yesterday she is falling asleep standing up! I think part of the issue is she is afraid to sleep because she wakes with horrible stiffness and pain. The whole situation is awful.
She is in agreement now that having 3 drs at different practices is not working well. There does not appear to be a comprehensive treatment plan. She has not heard one idea relative to the bone cancer, other than the previously super optimistic dr conceding that it could continue to spread.
So - 2nd opinion at Johns Hopkins on Thursday and at the James M. Stockman Cancer Institute on Monday. She needs a miracle!
I think that people are making the common mistake of equating palliative care with hospice. While palliative care is PAT of hospice, pain management is a separate specialty, available to all.
Not to nitpick, but this isn’t true. I am my own researcher and decision maker. So are most of the my peeps from my online support communities, a significant purpose of which is self-education. On the other hand, my own sister does not even know what stage her CRC was (5 yrs ago), chose not to consult an oncologist at all, and knows nothing about the genetics of her tumor and doesn’t want to find out. I do know a person with lymphoma who very specifically doesn’t want to do her own research. It’s a very individual thing. Clearly your friend’s situation, disease plus meds, seems intellectually debilitating, and it sounds as if she could use the “person with a notebook” more than most.
Where is her son in all this?
It is normal for people to see their NP before most infusions, not their oncologist, at least with the chemo I was on. Now that I’m on Keytruda that might change, but the infusions are only every 3 weeks, not every 2 weeks.
ETA: you are a good friend. You are both in my thoughts.
Thank you.
She had her second opinion today at Johns Hopkins - with an actual melanoma specialist - and has decided to leave her existing doctors and be treated by JHU.
Her scans show that after 3 Opdivo treatments, her tumors are growing and hew ones have formed. JHU is adding Keytruda and she will have both drugs every 3 weeks. Pain mgmt remains a major issue and JHU is exploring new options for her.
So, I am relieved she is finally getting more competent medical care, but it still seems very grim. We had to make the decision at work today that while she has 10 remaining weeks of FMLA, it appears unlikely she will return and I cannot continue to do both jobs indefinitely. But our small company has agreed at my request to keep her health insurance going indefinitely, even if it means she goes on COBRA and they will pay the amount. So, at least I was able to help with that.
Her son is in CA. I don’t completely understand the situation. She went a few years without seeing him, and then saw him last xmas and this xmas. I think money is an issue for both. Son has some type of anxiety disorder, does not like to drive, etc., so I’m not sure how much help he would be if he were to be here for a few weeks.
But, she is ok living with aunt and has her cousin and 2-3 friends taking her to her dr appts. Her cousin started a caringbridge so we can all get updates, which is good, better than exhausting her having to repeat the same info over and over again.
I struggle with the “what ifs”? What if she had a MRI sooner and learned she had cancer in October rather than late November? What if she had gone to a major cancer center/melanoma specialist in November instead of waiting until today? Kind of pointless, but on my mind.
Opdivo and Yervoy, not Keytruda. These names are a trip…
Can they do palliative radiationbto the tumor pressing on her spine to help with the pain? Wonderful news about the health insurance
I am sorry the update is grim but I do want to say again what a good person you are, @rockvillemom.
They are looking at focused radiation treatment - the radiation specialist at JHU is reviewing all of her scans and she should have an answer if that might be an option next week.
The combined cost of Opdivo and Yervoy is over $250,000/year. That’s in addition to all of the bills for doctor appts, scans, MRI, PET scan, biopsy, etc. etc. Our company has about 100 employees. I have no idea how extraordinary medical expenses for one employee impacts the company’s overall health insurance plan. But, the owners have promised me she will stay insured.
Opdivo and Yervoy was one of my options. My oncologist recommended Keytruda for me instead, but we have somewhat different diseases.
It sounds as if things are looking up, in terms of treatment, even though her situation remains unfortunately somewhat dire. You never know, she may pull out of this.
Meanwhile, your mutual employer is proving to be a stand-up guy (or gal ) in the face or serious financial burden. This is one case among many that illustrates why health insurance should not be linked to employment.
Excellent!
Once things have calmed down, SS disability should be looked into. I think a terminal/Stage 4 diagnosis makes one eligible.
Your company is stand-up. My sister’s workplace laid off (fired) an employee with BC rather than have her on sick leave or a LOA.
I wish more companies showed the compassion and loyalty that your company is showing in helping her medical bills be paid. She’d surely be in even more dire straits without their benevolence.
Yes, it is a wonderful company, very family feel to it, even as we have grown to roughly 100 employees.
@zeebamom - thank you for suggesting SS disability - did not think of that. Going to suggest it to her cousin right now.
I know of a women when diagnosed with breast cancer without insurance was able to get Medicaid. As she was in the hospital for almost two weeks as she had nowhere to go, the hospital actually took care of most of the paperwork. Yes, they did they to recoup money for her stay, but the hospital really put in a lot of work to get her covered. She then moved out of state to live with a sister and was able to get Medicaid there. As far as I know, her family doesn’t pay anything for any of her treatments.