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I need help.

emkat
Posts: 21
Joined: Sep 2012

It has been a few months since I posted on this board. TexasWedge was kind enough to send me a message the other day asking how my husband was doing. Between his message and reading Fox's inspiring post, I realized I need help from others experiences. Any feedback is welcome and greatly, greatly appreciated.

History:

My husband is 39 and was diagnosed in November 2011 with RCC >95% sarcomatoid. He had surgery soon after where they removed:(copied from Pathology report from surgery)

A) LEFT KIDNEY, ADRENAL GLAND, PERIAORTIC AND RETROAORTIC LYMPH NODES - A radical nephrectomy specimen (22.0 x
14.5 x 14.5 cm) including the left kidney (15.0 x 11.5 x 4.0 cm), a segment of the renal artery, renal vein, and ureter (3.0 cm in length x 0.4
cm in average diameter), and adrenal gland (4.0 x 2.0 x 0.3 cm).

B) PREAORTIC LYMPH NODE - A single fragment of yellow-pink fibroadipose tissue (5.0 x 2.0 x 1.0 cm) with three possible lymph
nodes ranging from 0.2 cm to 1.3 cm, in greatest dimension

(C) SMALL BOWEL MASS - An unoriented portion of small intestine (7.0 cm in length x 5.2 cm in average circumference).
There is a transmural fungating mass (3.6 X 3.2 X 2.5 cm) involving the intestinal wall.

Soon after surgery, he had a tumor show up on a lymph node on his neck. There were also enlarged lymph nodes in his abdominal area they were watching. He started Xeloda, Gemzar, and Avastin and did well on it for about 8 months. The tumors shrank and he went about a normal life. I noticed the tumor on his neck enlarging, they ran scans and started him on Sutent and Gemzar. After routine scans 8 weeks later, they noticed a spot on his lungs and mixed results with the tumors. They switched him to Votrient and Gemzar which he was on for 10 days. We admitted him to the hospital due to extreme pain. They ran scans and found that within 10 days the tumors had enlarged further including a tumor implant on his spleen, growth of the spot on his lung, and further enlargement of the lymph node on the opposite side of his abdomen. They switched him to Torisel and Avastin to be administered weekly. This was really rough on him. He totally lost his appetite, was too weak to walk around, and he started really struggling with shortness of breath (he had a little before but not this bad) and a resting heart rate of 142. He pushed and asked for an appetite stimulant and was put on Megace. He says its disgusting, but he is eating again so that's all that matters.

We just ran scans again and had our last appointment with the oncologist last Monday. He said that the spot on his lung shrank, the tumor on his neck was barely noticeable and they were seeing an overall shrinking of all the tumors. Yay, right?! Well, now he said they found spots on his lung that may be new or have been hiding. Because of this and my husband's overall state, they switched him back to Gemzar, Avastin, and Xeloda and told us that if we do not get this under control, he has less than six months to live. We went from smiling to crying in less than 5 seconds. Maybe he should have started with the bad news...? Here's the deal. His shortness of breath is disabling. He uses a wheelchair because taking two steps is exhausting. The doctors say they don't know why it is happening, but judging by their overall tone of the last conversation, I am not convinced we are sharing the same vision anymore. Half of the reason he was laying down during that appointment was because he was constipated. (He takes Oxycontin on a regular basis due to extreme back pain- They don't know exactly why that is either) Can we not throw in the towel due to extreme constipation, PLEASE?! They sent us to an endocrinologist last Tuesday to see if he has an adrenal gland deficiency. His thyroid levels are at a 0.5, which may or may not be causing problems. We are still waiting on the results. The doctor also threw in another "by the way," he has a compression fracture in his spine possibly due to metastasis but it doesn't warrant looking into further at this point. I don't know if thats because he thinks my husband will be dead in a few days or because its not the biggest part of our worries at this point.

Texas Wedge asked if I had asked my doctor about Cabo. I sent him an email on Saturday and am still waiting for a response. Does anyone have any feedback or advice? Has anyone struggled with shortness of breath and an increased heart rate? The doctors seem to dismiss that any of these could be side effects or caused by chemo or the pain pills.

I've tossed around the idea of packing up my husband, my 2 year old, and my dog and going to another hospital, but MD Anderson has been good to us and the unknown can be scary. Any advice or kick in the butt is appreciated.

NanoSecond's picture
NanoSecond
Posts: 532
Joined: Oct 2012

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
Posts: 21
Joined: Sep 2012

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? Smile

NanoSecond's picture
NanoSecond
Posts: 532
Joined: Oct 2012

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.

emkat
Posts: 21
Joined: Sep 2012

I was looking on Kidney_Onc after your post and found her email on there. I emailed her directly and she was kind enough to respond alreaady.

Thank you so much for suggesting this!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I'm too far away to be of much practical help but I would think that contacting Exelixis directly would be a good idea, with nothing to lose and every real prospect that they will do their best to help.

Have you made contact with Dena?  She's a dynamo and, of course, very well-informed about matters cabo.  She's also resourceful and might well come up with good suggestions and will know whose brains to pick to come up with more.   Thinking about you both and so much wanting something to turn the situation round for you.

angec's picture
angec
Posts: 622
Joined: Mar 2012

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
Posts: 21
Joined: Sep 2012

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!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 21
Joined: Sep 2012

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. :o)

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

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
Posts: 21
Joined: Sep 2012

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. Cool I just need to get all the doctors on the same page!

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

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.

emkat
Posts: 21
Joined: Sep 2012

This is incredible! I love hearing your story.

So, MDX also helped to clear up your bone mets? I was under the understanding that radiation was the only thing that worked on bone mets.

foxhd's picture
foxhd
Posts: 1932
Joined: Oct 2011

Yes emkat. The MDX cleared my hip and first spinal met. However, I have since had 4 or 5 other bone mets slow to respond. I had radiation to my spine and one rib with questionable results.  But now other bone mets are stable at this last scan anyway. We are counting on improvement since my pain is gone. No other plans are in the works. They said they won't call in an ortho oncologist unless it progresses to my long bones.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Tex's "normal bony appearances" and your "long bones" I'm struggling to keep CSN from needing to hire more sensors LOL.  Seriously though, your story just gets better and better and amazes me even more, ROCK ON!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I just need to get all the doctors on the same page!

I think you've put your finger on it there.  Thank goodness someone is being proactive and talking about a plan. The team doesn't sound too well co-ordinated. Please remind us where your Husband is being treated and what the RCC credentials of his Oncologist are.

I'm glad to see that you're not letting the negative voices floor you.  Please, both of you, keep on remembering Fox's come-back and where he is now.

emkat
Posts: 21
Joined: Sep 2012

He is being treated at MD Anderson by Dr. Jonasch.

He is meeting with us at 4pm today.

Nervous and anxious doesn't begin to describe my feelings, but you guys all know that feeling.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes we do and we feel for you. At least you're in top-class hands.  So you just have to stick to your guns and not take no for an answer.

emkat
Posts: 21
Joined: Sep 2012

The meeting went well. I think it allowed us to all be on the same page and clear up any misconceptions that my husband wasn't up for continuing treatment. He absolutely is. He said he was concerned that there were multiple new spots on his liver and if whatever new treatment he decides on can't stop that, then it is a grim outcome. I brought up Cabo again and he warned me about thinking that one single treatment is going to be the answer. I stressed that my point of view is if we are going to keep trying, we should be optimistic and I was willing to look into whatever I need to if it will help him or my husband. He told us that if nurses started talking about hospice that that information was not coming from him, it was part of the process when someone has been in a hospital bed for almost 3 weeks. It was good to hear that because his NP had started talking to us about it and it was like a steel curtain fell down in front of us for the rest of that conversation.

He said to give him a day or two to figure out the treatment options. I was really hoping that he would have them at the meeting, but I would still consider it a great meeting since now we know we all have the same goals. In the meantime, I emailed Dena Battle last night and I emailed Exelexis. When I asked about the gallbladder infection, the onc said he didn't know about that and I will need to follow up with internal medicine. If we could all meet in the same room, it would be fantastic. Seriously, patients need managers or agents.

Looking at his past treatments, I think we still have quite a few options:

 

End of January – beginning of October 2012: Clinical trial: Xeloda, Gemzar, and Avastin

October 2012 – December 2012: Sutent and Gemzar

December 2012 – end of December 2012: Votrient and Gemzar

January 2013 – end of February 2012: Torisel and Avastin

February 2013 – end of March 2013: Xeloda, Gemzar, and Avastin

Thanks again for your help everyone and for reading this. I hope you are doing well today!

 

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Arevyounattending the Kidney Cancer Conference to be held 4/06 at MDA?  There may be some useful information there!

emkat
Posts: 21
Joined: Sep 2012

I sure hope to! Thanks for the heads up, I didn't know about it.

angec's picture
angec
Posts: 622
Joined: Mar 2012

Hi Emkat.   I will be praying for you and your husband tonight as well. I wanted to ask you if they have started him on strong antibiotics for the port infection? The infection alone can cause his hr to go high along with high white blood cells.  Did he have any fever?  I hope they are watching to be sure sepsis doesn't set in.  

 

i saw trial listings for Sloans in NY for bms for Nivolumab anti-pd1 that fox is on and it said the trials were still open.  Might you consider calling there and speaking with dr. Motzer or asking your doctor to contact him?  This is ofcourse if the trial is not available where you are.  Maybe that is an option if Cabo is not?  I know there is something that can help And I am just trying to offer suggestions.  You are both doing amazing!!!  I wishi had your strength  and courage!  I know this is extremly hard but you sound like you have your head on straight and are getting things done.  I am pulling for you both, I pray things turn around quickly and you both get some relief!  Xxoo

 

emkat
Posts: 21
Joined: Sep 2012

Luckily, he didn't have a fever. They have been giving him antibiotics for the infection that he had in his port.

I am concerned that the travel would be rough. I was relieved that his doctor wanted to keep treating him and was still optimistic. When I saw him this morning, it dawned on me that trying to transport him all the way to Boston would be difficult. It hit me like a tough reality this morning.

Thank you for your prayers!

Daisy lo's picture
Daisy lo
Posts: 11
Joined: Mar 2013

Hi, Im new here myself and don't know anything yet about the medicines you mentioned. But I have read all your posts and I have the great need to just let you know IM PRAYING for your husband to regain strength, for his pain to decrease to a tolerable state, for the lesions and spots to shrink, for his breathing to get stronger, his appetite to increase and for healing in Gods name. And thank you for being such an amazing supporter to your husband, you are truly an amazingly strong woman. 

emkat
Posts: 21
Joined: Sep 2012

Thanks for your prayers.

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Go online to MDA and register!   I will be there!

emkat
Posts: 21
Joined: Sep 2012

The doctor has recommended Gemcitabine and Adriamycin.

My husband was in tough shape when I got to the hospital this morning. He had quite a bit of pain and when I checked, he was swollen through his back, side, and belly. The doctor said it was most likely due to low albumin levels since his liver is not working well. After being bombarded by about 10 people talking about hospice and his doctor saying that this treatment could possibly help him turn a corner, my husband decided to continue treatment. The doctor has gotten us this far and we trust his recommendation over those that are just stopping in the hospital room.

 

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