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Advice - Papillary RCC - Mets to Spine, etc. - Inlyta

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Hope all are well!  I wanted to inquire if anyone can give any advice on papillary rcc and mets spreading to spine.  I was told during my December scans that mets had spread to spine as I had two small spots, but no pain.  I have continued as active a lifestyle as possible, working on my old tractor and pickup truck, I coach an 11 & 12 year old basketball team and I have been known to stupdily (within the last 2 weeks) to ride motorcycles with my boys.  I feel great, much better than I did while on AZD6094 Clinical Trial which left me feeling nauseous, bloated (terrible belly bloating), swollen legs and extreme tiredness.  Now I feel very fit, active, etc. but have physical elements that are more concerning.

 

First I have slight pain beginning to build in my lower back, I have noticed that it hurts when I bend over, to touch my toes for example and when I press on the area on my spine where it hurts to bend over the pain feels to be in the bone.  The more I move around the better it feels.  It seems to be out of sight out of mind to move around.  It does not, at least at this point, hurt more in the morning, at night, etc.  I am sleeping all the way through the night with little variation in sleep habits.  I had been going to a chiropractor but stopped after I was advised by my Oncologist that going to a chiropractor and being adjusted with cancer mets in the spine is probably not advised, so I have stopped.  I had been having back pain, but this pain is different.  I am now on Inlyta and I read that Inlyta is not ideal to fight cancer in the bone.  Can we combine Inlyta with another drug to help fight the spread of cancer in bone if the Inlyta were to be working on the soft tissue cancer?  Does it even work like that?

 

Another concern I have is I have a lump about half the size of a golf ball that seems to be pushing out from my belly just above the belly button, easily noticeable.  When I press on it it feels soft, not a hard lump, no pain.  It is not always present and is more noticeable after being upright all day.  when I lay flat you cannot see it at all or even feel it.  It seems to be worse after I have eaten and have a full belly.  My fear is that it is a hard cancerous lump that when pressed just pushes down due to other soft tissues in area my hope is that it is simply fluid build up from lymph nodes that were removed.  On a prior CT scan I was told that I had fluid building where I had lymph nodes removed earlier, but I am realistic and know that my track record is that worst case scenario seems to be my standard protocol!

 

Any advice, sorry I am so wordy here!  Thx again to everyone for all you do to help each other on this site!

 

God Bless!

Tom B.  

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

HI Tom~

Sorry for the news of mets on the spine.

But I just wanted to add that there are chiropractors who do NOT manipulate the vertebrae but assist in pain relief and healing. Mine uses B.E.S.T technique which is using a finger, while you hold your breath for each moment down the nerve routes. They have specialized training in this technique and they do NOT touch the vertebrae. Keep that in mind.

And the other lump around your navel sounds more like a hernia which is totally fixable. Now I am no doctor but it is common. See your surgeon to know for sure.

Just know that I hope you keep us informed so we can support you, best we can. I do not know any more than this, but I am sending you support and hope your way~

Gentle hug, Jan

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Thank You Jan.  I will look into the B.E.S.T technique you mention. 

 

Very much appreciate your response!

 

Tom

a_oaklee
Posts: 440
Joined: Nov 2013

Hi Tom.  Sorry to hear that you now have mets to your spine.  I just wanted to share with you that my husband has taken Inlyta for almost 2 years with stability.  Actually they say he has no evidence of metabolic activity of his bone mets.  He has clear cell RCC and the mets were to spine, rib, shoulder, hip and head of femur.  Also one lymph node that was removed.  He does get Xgeva injections once a month.  Are you receiving that too?  He has MRIs of his spine every 4 months now.  

My husband always has back pain but we think that is from the extensive amount of hardware that was placed to stabilize his spine at the time of diagnosis.  He has had cyberknife two times to his spine, which helped with some of the pain.  We are going to talk with the neurologist to see if they can do a nerve block and hopefully he can cut back on the pain pills.

I think you should talk with your doctor about the lump.  Do you think it is a hernia?

I hope you continue to feel well and that Inlyta works well for you.  Please continue to post.  I am very interested in how people are managing spinal mets and back pain.  

Annie

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

My wife feels certain that my lump is a hernia, it is right where my incision was for surgery and after review by "googling" lump above belly button, the number one hit was hernia.  The pictures all look similar to what I have, some much worse.  I have been advised to wear a lap band to help and seek additional medical attention, advice on the issue.  Yes, I take a monthly Xgeva injection in my arm.  It really wipes me out.  I also take other Calcium supplements to help.  I go back to the Doctor on the 18th of February but I am not scheduled for any additional scans until March.  I am very anxious and hopeful for some good news.  Thank You for sharing your husbands condition and I hope and pray for him to whip this thing good and for you to have continued strength to support him in his battles!  Us cancer patients have a unifying enemy that we are all fighting, those of us lucky enough to have a supportive spouse, parents, loved ones, friends etc are so blessed.  It truly is the most wonderful blessing to have support, God Bless You!

 

Thx again!

Tom

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

Hi Tom,

It looks like you sent me a question but a can't find it.

I was thinking the same thing as your wife, a hernia.

Would have it checked out. 

My husband has stage 4 real cell carcinoma. We are fairly new to all of this being diagnosed onThanksgiving day 2014.

Our story is on my bio page.

Right now I'm researching ways to boost the immune system. I also found a book by Gerald White you may want to get. Three months to live is the name of it. He was diagnosed back in the 90s and God bless him is still going strong. God bless you:)

Theresa

 

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Thank You Theresa! God bless and wishing you and your husband all the best!  Hang in there!

 

Thx

Tom

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

When they whipped my kidney out.  It was a lump. I was a bit nervous about lumps (cant think why?). I showed my doctor and he said it was a hernia. I was surprised at how relieved I was. Get it checked out. What have you got to lose?

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Will Do!  Thx!  Have my next appointment tomorrow.  Will press the Doc on what he thinks and hope it is a positive appointment.  As most of you know when we visit the Doc these days we mostly get bad news.  Hopefully tomorrow I will get some sort of good news.

Thx again to you Footstomper and all the other responses!

God Bless!

 

Tom

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Let us know how it goes, thinking of you

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

Thank You everyone!  It looks as though, for now, they are calling my abdominal lump a hernia.  According to my doctor it has all the characteristics of a hernia and should be treated as such until or unless it seems otherwise.  They did not seem to be alarmed, though I continue to be.  My labs were all good, per the Doctor and my creatine level was 1.09, which is the best it has been in over a year.  They upped my Inlyta dosage to 10mg (morning and night).  This I believe is the max approved dosage possible.  They were not too concerned about my back pain.

 

My back has continued to bother me.  While I am moving, up down, side to side, etc, no pain.  If I remain still long enough I hurt, like a bad muscle strain, just below my left shoulder blade and to the right (toward the spine).  Last night it was especially bad, but I shoveled snow, put together an air hockey table, cleaned out a garage, threw out some salt for the drive way, removed the hood from my 1951 farmall cub (for a tune up), etc and charnged the battery in my 1948 Dodge truck.  I felt it was an AWESOME day I was active!  But the pain got after me last night.  It feels better when I lay flat with my arms over my head like I am stretching out my back.  It also feels better if I take a lacrosse or a tennis ball and sit with my back pressing against the ball right on the spot where it hurts.  It feels super, I cannot explain it.  Almost like when you have a terrible cramp and you can find a brave soul to rub it out for you, my wife bless her heart has to voluteer by coercion!  Taking 1 tramadol does not seem to help at night, but taking 1 tramadol with an aspirin or two seems to keep the pain at bay and I sleep through the night and seem to be ok, or better in the AM.  I wake with other aches and pains, but the Spot pain beside my inner left shoulder blade seems better. 

 

Sorry for the long winded update!

 

Thx again to all and hope each of you are fighting the fight and winning every moment/day!

 

Tom  

Tbuck1971's picture
Tbuck1971
Posts: 50
Joined: Jun 2014

I am on week 5 of Inlyta 10MG.  So far I am tolerating the drug well.  I have this terrible stressed sensation in my mount, not ulcers or any type of sore, jut feels like I have burnt my tongue now for the past week or so.  Any time I drink coffee or eat anything hot feels like I previously scorched my tongue.  My energy level is still pretty good, but from time to time I will want to take a nap.  I have tramadol for pain and I now have a muscle relaxer, cannot recall the name (starts with an F, but I have the generic).  When I get to move around I feel really good, when I am stuck sitting or lying down for long I get very stiff QUICKLY!

My blood work continues to look good, but that is so misleading it only tells me that my internals are working ok, not that anything is being done to stop this hateful disease.  I am positivo, but very anxious as we all are about my next scan which at this point has been scheduled for April 1st, YES FOOL's day!  Because I am the biggest fool I know I felt it would be a fitting day!  Dr had the gaul to ask me if I wanted to wait until after the weekend to get my results, really???  Can you slap a doctor and not get thrown in jail!??  I didn't slap him though cause I am more of a hugger and not a slapper!

One last thing about the Inlyta:  My blood pressure has shot out of the roof 185/114 yesterday.  When I started taking it I was at or near 117/67, not good.  I have been on a blood pressure med for 5 years and simply stopped taking it some time ago because my bp was so good.  I just started back yesterday after my appointment so we can see what happens between now and April 2.

 

Figers Crossed and Prayers Welcomed!

Thx again to each of you!

Tom

a_oaklee
Posts: 440
Joined: Nov 2013

I will be keeping my fingers crossed that your scan results are great!  I will say a prayer or two also.  As you know my husband is on Inlyta also.  I asked him if his mouth ever feels sore and  he said it didn't.  He actually had to stop taking BP meds because his blood pressure is now normal.  This is the strangest disease and the medications affect everyone differently.  Let us know how your scans turn out.

Annie

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Tom, you are in my thoughts and prayers,may your next scan will be great, please let us know the result, Forough

 

 

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Tom, one question if you don't mind. How and what was the first signs and symptoms of your spinal mets? how sharp & severe the pain was in first days or weeks? I'm asking because I'm concedred about a pain I have just below my right shoulder. Thanks

a_oaklee
Posts: 440
Joined: Nov 2013

My husband had severe back pain and that was his initial symptom that made him go to the doctor.  He was given pain medication for 2 months.  They thought that he lifted something wrong and hurt his back.  It wasn't until he had an episode of hematuria and a trip to the emergency room when they did a CAT scan and found the kidney tumor, and the mets to his bones (spine), hip, femur, shoulder, rib.

The back pain was constant.  It was an ache.  Not sharp.  My husband says 8 out of 10 on a pain scale.  Narcotics helped but did not take it away. 

When he developed mets to his shoulder he was experiencing the same aching pain to his shoulder.  He thought he had done something and injured himself.  It was constant pain, day and night and no positioning, heat or cold, helped. 

He had a met to a rib and the head of his femur since the beginning but he has no complaints of pain associated with them. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Good luck with your resultls, Tom! Keep us posted! (and got a chuckle about your slap comment - keep up the good humor!!)

Hugs

Jojo

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