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This is new for me.

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

I am new here, so hopefully I can pass on what I have gone through and maybe get some advice for my situation.

I was diagnosed with Stage 4 Clear Cell on Dec 29 (2016).  We were living in Switzerland at the time and had to go to the emergecy room with severe back ache because my doc office was closed for the holidays.  I didn't know what pain level 10 was like until this came along.  The tumor mass was 7.5 centimeters, but had spread to my spine, lungs, ribs, hips and skull.  The attending physician probably saved my life that day ... or at least extended it. This first thing they did was 20 shots of radiation on the tumor in my spine, which has / had destroyed about half of the L1.  I then had the right kidney removed in January.  Kyphoplasty on my spine in April.  Numerous hospitalizations, emergency room visits, complications, and countless medications I am still here.  Didn't think I would be at one point.

We moved back to the USA in March when I got accepted at Moffitt Cancer Center in Tampa.

I am currently on Votrient which seems to be having a positive effect on all the tumors except one, and it's stable.  No new lesions since first diagnosed.  The Votrient is pretty tough medication.  While I don't have the really bad side effects, I sitll have some including extreme fatigue.  This sometimes becomes acute and I can't get out of bed for a day or more.  When this happens I reduce the dose for a few days.  I am currently on the full 800 mg per day.  Also, all of my hair is completly white after just a few months.

I guess the worst part of all of this is the uncertainty, depression and anxiety.  It also takes a huge toll on my family.

icemantoo's picture
icemantoo
Posts: 3353
Joined: Jan 2010

Larry,

Sorry your journey started on the rough side. Like you Irma glanced us in Palm Beach County last week. Hope all continues to improve.

 

 

Icemantoo

Supersum's picture
Supersum
Posts: 109
Joined: Aug 2017

Tough break Larry, it's like being hit with a baseball bat. Good news is they got the kidney out fairly quickly (no longer than 4 weeks after diagnosis anyway) and started on treating the rest.

Fatigue can be really debilitating it's no wonder you adjust your dosage to limit the impact. 

Anxiety and depression can be difficult to deal with, have you checked if there are any cancer support groups at Moffitt or in your area, if participation in something like that suits your personality?

Moffitt might even have support groups for family members if this could benefit a close loved-one trying to understand and deal with your situation.

I hope you and your loved-ones find the strength you need to keep fighting this as you get over the worst.

 

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

 

Thanks.  Moffitt is an hour and half away, but there may be some support groups here in Sarasota.  My wife found this site, and suggested it for a start.  I am an extremely independent person, so it's tough to share these things.  Working on it.

 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

I know of only some of what you speak.  My situation is similiar in that I am also stage 4.  Originally, the cancer had spread to my adrenal gland and around 15 lymph nodes around the original site.  Only later did it show up in two areas in my chest.  For me, it's been 4 and a half years since the cancer was discovered.  You are goimg through more, that is sure.

My treatment has included radiation, everolimus, sutent and (currently) votrient.  Votrient has been working very well for me.  I hope that it continues to do the job for you.  I can't tolerate the dose you are on, but the reduced dose has been effective.  My surgeon guessed that I had 3 years before the cancer would beat me.  Obviously, I've found that a patient can do better than what his/her doctor's prognosis would suggest. 

I don't know much about the cancer center you're using now, but I assume that it's top notch.  That's very important for you.  Be sure that they follow you closely.  I like the idea of having second opinions when important decisions have to be made.  My oncologist has no problem with that.

Some of the anxiety you've felt may subside somewhat as time goes by.  Cancer has forced its way into your life and it is there to stay.  Hopefully, you can co-exist with it.  No matter how well you do, cancer will always be something that's in the background for you, affecting how you look at life.  That's how it's been for me, anyway.  Especially when you see some success with treatment, the depression and anxiety will be easier to deal with.

Consider the part that nutrition may have.  My wife and I are convinced that it's important.  Fortunately for me, my wife has read anything she can find about the affect that different foods have on cancer and she works to incorporate what she learns into her meal-planning.  The nutrition idea isn't subscribed to by all, but we are sold on the idea.

I would guess that you have found that some friends and family members have stepped up to support you through this and some have kind of disappeared.  Don't worry about those who haven't been there for you.  Relish those who have.

Praying for your success ...

 

Dutch

 

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi larry54,

Like Dutch, I have also some similarities with your situation. Treatments included nephrectomy, Votrient, Xgeva, radiation, and now Opdivo.  You can click on our profile pictures/names for more information.

I hope Votrient continues to work for you. I got years out of it.

PS: Now that I'm off Votrient, most of my hair is turning dark again, except on my head. dang! I guess I turned "gray" while I was on Votrient and didn't even know it. :(

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

Hi Larry!

 

I am new as well but I am not stage 4 and really don't have anything to offer you except well wishes and prayers.  I am glad you are responding to treatment.  I have found these guys a great wealth of information and the feeling of having a place to go where there are people that know what I am feeling and going through etc has been a tremendous help to me mentally.  

Steve51
Posts: 23
Joined: Oct 2016

My brief story: I was diagnosed with 12cm mass on left kidney Feb 2006. Had the kidney removed Mar 2006 and it was clear sailing until 2015. I received a call saying, a tumor appeared on my right lung during a routine scan. I became stage 4 and the tumor was removed. Another tumor showed up Nov 2016 and it was removed. At that time I was tumor free. Since Jan 2017 I have been taking part in a study at City of Hope in Calif. I take pazopanib (same as Votrient) daily. The study will hopefully prevent new tumors from growing. My dose started at 800mg, but my liver didn't do very well. Then it was dropped to 600mg and finally down to 400mg. I am 66 years old. The fatigue is still an issue, along with joint pain, can't taste much, white hair (we should be happy we have hair). I'll finish the study Dec 27th. I'll never really know the results, but hoping it has done some good, if not for me, maybe the patients that will be coming down this road.          This is a great support network. There is a wealth of information and compassion. I am mostly the guy who does the reading here, so I do understand a lot of these good people. Hang in there. We are all a bit different and a lot of us respond well to the new drugs. Good luck and just so you know, most people think my white hair is beautiful. Haha        

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Welcome Larry, glad you found us! Will be here all the way if you like us to be on your journey. I know you already started treatement and have the white hair to prove it! i bet folks are telling you it looks great!

Now remember, some medications/treatments rob our brains/bodies of the very nutrients the brain needs to function properly. Sometimes it is not always psychological (though it feels like it), but more deficiencies of these nutrients. Make sure too you use a probiotic to keep your immune system healthy, yes it starts in the gut. 

Our livers too become sluggish and toxic from too many chemicals/toxins from what we ingest and from medications. If there are any specialized Nutritionists (not dieticians found in hospitals0 who are trained in NRT =Nutritional Response Resting) they can pinpoint EXACTLY what you are deficient in, how to help with side effects from medications. The "supplements" are whole foods made into capsule or ground into pill form. It saved my life!

Thanks for sharing. 

Sending you serenity, HOPE and better HEALTH!

You and your family already have been through too much!

Hugs, Jan

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

 

Thank you Jan.  That is good info.  I have lost a lot of weight along the way, so my wife is working overtime to make sure I eat right.  (I call her the project manager).  I will check into those supplements and inquire about the nutritionist.   I have to be careful because I am also pre-diabetic. 

 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Larry, know the "supplements" are WHOLE FOODS, not chemicals. That is why they are complimentary to any meds. Its like eating the bEST veggies for eample.  It will not replace any meds or treatments but help A LOT for what you will become (or already are) deficient in due to chronic/infammatory diseases or due to mediations which deplete one's nutrients. So the brain CAN work more efficiently. The guy I went to (quiet, non assuming) had a father, a physcian,  who had Crohns and died from it in his 40s. This Nutritionist also ended up with Crohns in his 20s, changed his college discipline to NUTRITION, took over the family business (health food store) and is TRAINED and CERTIFIED in NRT method of evaluating. He saved my life from anoher chronic disease I had. 

NRT=Nutritional Response TEsting. Again, its NOT dietcian. Its probably cash only but it was not that costly. Again, he saved his own life and many others. 

Good luck!

Jan

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

I found the Nutritional Healing Center of Ann Arbor.  Is this to what you are refering?

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

 

I appreciate the comments and advice and look forward to participating in the conversations.  I know this is a lifelong battle.  My doctor in Switzerland told me there was no cure (at present) and the goal was to manage my cancer.  Six months ago I didn’t think I would be here long, but now am trying to live a normal life.  As normal as can be under the circumstances.

 

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

can understand the pain and suffering you are all in

In hindsight did you have any symptoms at all

You are one tough guy  so I know you will be  in shock but happy you hear you have a great team behind you.. it really makes a huge difference

I will pray you continue to  fight  and shout and never give up

Annie

 

larry54's picture
larry54
Posts: 14
Joined: Sep 2017

 

Hi Annie

 

Thank you for your post.  This is really a tough illness, but then again I suppose all cancer is.   Being tough is the hard part.  It was one of my strengths in the past, but now something I am striving to regain.

 

Yes, there were symptoms.  Some obvious, others maybe not so much.  I have scoliosis along with other back issues I have dealt with my entire life.  I am used to back pain, but not severe.  I started getting a “different” pain about six months before diagnosis.  It started with not being able to sleep in a comfortable position.  In the end, the pain was so bad I could hardly stand.  My GP diagnosed it as an inflammation and gave me some serious anti-inflammatory meds (steroid and non steroid).  Those worked for a couple of weeks but in the end had no effect. Finally my wife took me to the emergency room.

 

salsa's picture
salsa
Posts: 14
Joined: Sep 2017

Sorry to hear your situation I’m new here as well, but some things I have quickly learned is that there are lots of people here that have been dealing with kidney cancer as a chronic disease, the more you learn about your cancer  the more empowered you become, statistics are always old and never give you a true indication of anything, and new and better treatment drugs are rapidly evolving. In other words this is a marathon not a race so keep your body and mind as healthy as possible. 

Deanie0916
Posts: 422
Joined: Nov 2016

That we all have involuntarily joined. So many hear are managing with Stage 4 you will get so much great advice. My thoughts and prayers are with you and your family.

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