I need help.

Hi Emkat,

I am very sorry to read about what you and your husband have been going through.

I just want to second Tex's suggestion. Cabozantinib (Cometriq) is creating a lot of excitement right now.  I assume that you have been following Chris & Dena's Battle's blog "The Kidney Cancer  Chronicles", right?  Their latest entry gives a lot of excellent insight into the drug and, of course, the success Chris that is having with it.

I am also aware of at least one other mRCC patient who recently started on it and, even though it has only been a 2 weeks, seems to be responding quite well (and with no side effects yet).

Also, if there are any bone mets this would definitely be a drug to pursue.

Finally I am sure you know that most pain medications, especially Oxycodin, will lead to severe constipation.  You have to take something like Miralax or the equivalent to deal with that.  It may also depend on the time of day when taken for best effectiveness.

I am sorry I can be of more help. But do press your demand for Cabo. It will be worth it.

Best wishes,

-NanoSecond (Neil)

emkat said:

Cabo

Yes, I have definitely been following that blog. It was good to see such hopeful news on there.

I did ask my husband's oncologist about Cabo and he basically told me the drug is in development and only in clinical trials. He said he didn't know that it would be much better than what we are already trying. I am stuck at a crossroads of if I should trust the doctor or keep pushing. What are the odds if I contact the Exelixis directly, they would be willing to do another clinical trial at MD Anderson for my husband?

It should not require that.

Since cabo has been approved for treatment of thyroid cancer it is now available outside of clinical trials. I believe all you need to do is convince your oncologist to write a perscription for it

However, the cost may still not be covered by insurance.

Dena Battle has given some detailed information about getting cabo on the KIDNEY_ONC website. If you are not a member you really should join - there is an immense amount of information and expertise available there.  Meanwhile here is pertinent portion of what Dena posted a few weeks ago:

"For heavily pre-treated patients like Chris, who don't qualify for the drug in trial, the other option is to have your doctor write a prescription for Cometriq in the off-label setting.  The downside to off-label usage is that insurance often doesn't cover the drug.  The cost of the drug is $10,700 per month.  The drug is being sole-sourced through a specialty pharmacy called Diplomat. So, if your doctor is willing to write the prescription, you'll work through Diplomat to get the drug.  They are amazingly helpful.  I think that for folks like Chris, who have run out of options, going this route is very doable.  If you're considering asking for an off-label prescription, there are a few avenues available to help with the cost, appeal the insurance decision, etc...  I'd be happy to talk with folks off line about some of those options."

If you email me directly at: n.feldman@videopost.com I would be happy to pass on a message directly to her. That way you can both set up communication directly. I think her experience and her thoughts about your various options will be invaluable.

Hello, if I might add my thoughts! I would push ahead and try to get the treatment. I don't think anyone can know if it would help unless you try.  I am finding that alot of oncologists don't really know the drugs to the fullest extent. I most certainly would not give up. Even if he were to try for the anti-pd1.  I would give it a shot and keep going. I base all of this on what Fox went through. His case is an inspiration. Unless the drug is tried then they shouldn't say they don't think it would do much good. If these new drugs don't do any good then why do they continue to make new ones that won't do any good. I would pray very, very hard and then move forward. Try for the Cabo or the anti Pd1 BMS.. but do it asap.  Prayers coming out to you and wishing you all the best. Your husband is young and I bet his body is willing to fight.  All the best to you.  xxoo

emkat said:

A bump in the road

My husband was hospitalized last Thursday night because we were unable to manage his back pain with the Oxycontin and Oxycodone. They admitted him and he has been there ever since. They did a chest x-ray and found nothing different than what was seen on his scans from 2 weeks prior. After being on a PCA until Sunday, they finally transitioned him to pills, doubling his Oxycontin dose. Sunday night the pain came back despite the Oxycontin and dilaudid. They FINALLY did an MRI of his spine and saw that he has multiple "lesions" on his spine and hip, including a compression fracture on one of his vertebrae which explained why he couldn't walk. Today, they are going to do a kyphoplasty to fill the gap in his spine. They said he should feel instant relief. Surprisingly (to me) its an outpatient procedure so recovery time should be fairly quick. I am expecting them to put him on Xgeva and localized radiation. I am going to keep pushing the onc about cabo or to try something new. I have not seen him since my husband was admitted and am hoping that after this procedure, he will come by for a chat so I can pin him down. Will let everyone know how it goes!

You seem to be going about it in the best way possible.  Please do keep us posted as soon as you have anything new to report (and, of course, more often if it helps) so that we can toss in all the ideas we have that might help.  His youth and fitness will be paying dividends and if the back pain can be eliminated things will improve mightily.

emkat said:

Update

They finally did the kyphoplasty last Monday, the 18th. They almost didn't do it, because his white blood cell counts were high. He definitely felt some relief, but I wouldn't say he felt the instant, miraculous relief they said he would feel. On Thursday morning, they were talking about discharging him since they had transitioned him off the PCA pump of dilaudid and onto Oxycontin pills. He was in a lot of pain and we both questioned if he should be sent home. The doctor and pain management specialist told us that he was deconditioned from being in the hospital for 2 weeks and still recovering from surgery, so it was normal to be in pain. He has significant shortness of breath which they attributed to deconditioned chest muscles that were having a hard time expanding the way they were supposed to. He needed to get out of the hospital and start moving around. I took him home and we practiced taking a few steps at a time over the next few days. His pain seemed to be better managed, but his shortness of breath was so bad that more than a step or two and he was panting. Finally, on Sunday night when he was out of breath after making a quarter turn in bed, it was apparent it was getting worse.

Come Monday morning, he was scheduled for all his usual Monday appointments (blood draw, meet with NP, treatment). When he stopped in to have his port access, they looked at his port and decided it was infected and needed to come out. They took his vital signs and saw his HR was 144 and 6 hours later, they finally got him to the ER which was directly across the street. They did a CT of his chest and found the growth on his chest had grown a little more than .5 cm and the tumor on his spleen had increased by about 2 cm in the past month. They attributed his shortness of breath to the growth on his lung. Looking at the measurements, it is 1.9 cm and has been much larger in the past, so I didn't totally buy that scenario, but I assume they are the experts. They ER doc was nice enough to at least recommend an internal medicine doctor see my husband since the scan also showed some fluid on his gallbladder. Fast forward to last night, they removed his port access and did a CT of his ab/pelvis late last night. He is jaundice, his urine looks like fruit punch, he is gaunt, and he has been NPO for 2 days.

The word from his oncologist via email is that he wants to review scans and make a clear plan from there. Those that he has sent in to speak for him have mentioned there are no more options for him. There are a few factors that make me question them- he had an endocrinologist visit a month ago. She wants to put him on meds, but it has taken over a month to even be able to schedule another appointment with her. He is in the SAME BUILDING as the office and I begged the endo nurse to please send a colleague or whomever they could spare to see him if it would help him. I mean, an infected port, gallbladder, and wonky thyroid.....? Isn't that something else that would affect his overall well being? My husband was pretty tired last night, but he did say to me that he would like to be treated like a regular patient and not just a guy with cancer. That's not a reach, right? Anyway, any advice is always appreciated. And I tried to make this short, but the adrenaline made it pretty long. Thanks for reading. )

Emkat, the kyphoplasty can provide near instant relief in the right patient. Sorry for all your husband is going through. Too many complications. I hope all his doctors can become focused on helping him and not just labeling him a "cancer "pt. They need to be more aggressive.

emkat said:

Thank you

Thanks Fox. I have showed my husband your story, and he found it particularly inspiring. We have a Fatboy at home and are looking forward to riding it again, hopefully sooner rather than later. Its therapeutic. I just need to get all the doctors on the same page!

I had mets to my rt. ilium and spine in late 2011 and they cleared right up after starting the MDX. Painful. Walking was difficult and sneezes were murder. In June of 2012, I was off on a bike trip to upstate NY. Without warning (as I remember) I once again developed pain in my spine and then ribs. Talking was even difficult. We were camping and I didn't know how I was going to get home. Maybe 200 miles away. But I managed. Pretty much had pain from then until just the last few weeks. I am getting excited about this riding season and have booked camping sites at a half dozen places. I have had a scan and infusion rescheduled to accommodate my travels.....also thought that golfing might be over but now I'm thinking I will be out in a couple more weeks.