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Clear Cell RCC - Another Recruit

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Hi,

I am finding it hard to get this post started. To know what to say. To introduce myself and write something that describes how personal and unique the past two months of my life have felt. Yet the more I read through this board, the more I see that this is a journey walked by so so many before me. So many familiar sounding stories. The only other time in my life that I have felt so unique was when I brought my daughter into this world. It felt/feels like I alone were the only human to have faced that challenge!

It may amuse (or annoy) some that for the past two months I have consistently stalked this board. And whilst I have not been an active participant in discussions, I want to say that so many of your words have helped me through some not so nice days. Almost every question that I have come u ever come up with, almost every thought, has been raised somewhere on here. And so among doctors who have told me to just get on with life, to family members who have suggested that I am just 'over analysing', it has been comforting to sit quietly here. To have a feeling of familiarity, and just read real stories.

I read this board in the days following diagnosis of a large tumor in my right kidney - a big shock as a super fit 32 y/o seeking antibiotics for what i thought might be a kidney infection. I still remember those words "there's no easy way to say this..."

I also seeked solace here in the days leading up to my open radical nephrectomy. I got more answers and tips here than any of the doctors or specialists could give. On the eve of my surgery and throughout recovery... I have been here.

And now, well now I find myself here again reading posts about clinical trials. My cancer was clear cell, Furhman stage 2 to 3. My urologist refused to give me an overall grade, however research tells me T3a (sinus fat extension and vascular invasion of renal pelvis). When I asked the urologist about adjuvant therapy, he stated I don't need any. When I asked for an oncologist, I was told I don't need one. "Just accept that you have had cancer, that you have lost a kidney, and get on with your life" was my surgeon's response. I felt cheated. Yep, you've cancer. Yep, you're a rare case, but seeya later anyways.

So a few days ago I got a call from oncology citing a referral from my urologist. Yes, on advice from an intestate urological oncology team, my surgeon has hchanged his mind. SO just when we were getting used to the idea of a future consisting of surveillence only, I find myself in unknown terrain yet again. A quick internet search found the oncologist to be closely associated with clinical trials in my area. We will know more in a few days... but preliminary conversations with my partner tell me this is going to be a tough challenge to face, perhaps even our toughest so far. My cancer was not found to be metastatic and to date no treatments (that I can find anyway) have been shown to prevent recurrance in those who are at high risk. For several reasons I immediately sway toward clinical trials, my partner against...

In sum, I think I really just want to say hello. To share some of my story and say thank you to all of you who have been so brave in sharing your fears and triumphs. Finally, I feel strong enough to join you all here.

icemantoo's picture
icemantoo
Posts: 1452
Joined: Jan 2010

Hanno,

Welcome to out club. Feel free to wander through out posts. Each of us has a different perspective. The commonality is that we each go through this not so fun surgery to hopefully get rid of the Cancer. For some of ua the journer continues. More and more over the years cures have become common place even for those whose diagnosis was not perfect. Keep up a positive attitude and before you know it you will be helping the newbies.

Each doctor treating RCC should be requied to read our posts and know what we go through and what we think.

Icemantoo

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

This is one place that lurking is perfectly acceptable! It's hard enough dealing what's happening to you, personally, without the thought of 'meeting' so many strangers. Yes, we've all gone through what you're going through - in one way or another - but we're strangers nonetheless. But I say hello and WELCOME - to another member of our family!

First thing - always get your own copies of all reports, lab work, etc. My urologist even told me to get copies of every scan or x-ray done so that I've got my own 'history' at hand in the event I need to see a new doctor at some point. So I've filed each scan along with its appropriate report, back alllll these many years. I also get copies of all my labs. Labs reports always indicate whether a value is abnormal (low or high). Use these reports as launch points for a good discussion with your doctors. Ask what something means if it makes no sense to you. Be an active participant in your own health care. Research as much as you can online (thank GOD for the internet!). This is one disease where 'ignorance' is not bliss!

Another place to go for information (which is full of professionals and people who are fighting tooth and toenail to beat this disease) is listserv.acor.org/archives/kidney-onc.html.

Furman is 'grade' so you're grade 2/3? How large was the tumor? Any lymph node involvement? I think a clinical trial is something to consider. Get all information you can - make a solid informed decision.

Regardless of anything else - you've come to a good place - for information, support, or just a place to safely vent!

LizB
Still NDY

Hans Peter
Posts: 8
Joined: Jan 2012

I've been on and off here since my surgery last November.Metastasis to adrenal gland,bone lung.Been doing the Sutent for 3 rounds now.Getting ready for Scans and results to find out where this has taken me and the direction I will go! The first so pretty scary at this point. Want to know but afraid of the answers!Anyway my point is that attitude is 90% of the battle...trying to stay in the best shape possibe,and nutrition are just as important!
A good support group is also needed....Lurking here...I did the same for awhile myself!

matchframe
Posts: 58
Joined: May 2012

Welcome to the club. This is a great place to be to share and ask about experiences and knowledge.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

I am on a clinical trial. Read my posts about my early prognosis and current status. My clinical trial of MDX-1106 has saved my life. You bet that I am a clinical trial advocate. However, let me say this, Choose a trial carefully. Not all trials are available to everyone. It can limit options. I am lucky to be on this trial and will remain on it as long as necessary. Therefore I haven't looked at the available trials currently recruiting candidates.Good luck.

brea588's picture
brea588
Posts: 111
Joined: Jul 2012

welcome to this great place for knowledge and people with great encouragement. I cant say much or even tell you much as I am waiting for surgery on Aug 28th. Sure has been a long time since i found out of RCC and surgery, over a month. Had a lot of time to think and I come here everyday and read from the people here and I get comfort from them. Thank you all. 2 weeks from today i will finally have the surgery over and hopefully doing ok.

goyler
Posts: 11
Joined: Aug 2012

Wow, I could have written your post. I am very close to the same scenario as you. (Except I am a 54 year old male and I can't write as well as you.) I too had a T3aNxMx, 7.5 cm grade 4 cancer growth. I had mine removed on April 27th of this year. I have not been referred to an oncologist but will be requesting one this week. Every time I start feeling sorry for myself I look on this board and it picks up my spirits. I sometimes over think this whole thing then I read the post of others who have had worse prognosis who are doing great and remaining positive throughout their postings and guidance to others. I am so glad I found this site. Good luck with everything.
Greg

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hanno,

I think most of us did our share of lurking before actually posting, but now you're here, welcome. I can't say much more than my fellow board members have said, but know we're here-- with heart, eyes and ears open--hoping to make the journey a little easier.

I too am an advocate for trials and hope you'll at least investigate. I believe we have several members on this Board in trials. Fox is on MDX 1106 and my husband is on MDX 1106 and Votrient. Fox has experienced wonderful progress since starting the trial and my husband also is doing very well. I agree with Fox about being diligent in your research before joining a trial and knowing what future treatments may be affected by your participation in a trial. I also think we have members on a Votrient/placebo trial to test its effectiveness on recurrence, on Inlyta, on Sutent, and on several other newer drugs. The weapons being used to fight kidney cancer currently reflect a big arsenal. Keep us posted.

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Wow. What overwhelming responses of support, thank you all very much for taking the time to read and to reply!! Now I really do feel like I have found a special place. I am pleased to read that my lurking wasn't frowned upon here :)

Some great advice in from you all in there too! I have actually been developing my own little (quickly expanding) medical history file. Until reading your post LizB I had actually become a bit lax in that area and not persisted in obtaining a few records that I was having difficulty getting my hands on. Fixed that today with a little perserverence and my records are now up to date.

I also saw an oncologist for the first time today and providing I meet preliminary test criteria, I am invited to participate in a sorafenib trial (placebo/sorafenib). To answer your questions LizB, my cancer was stage T3a. 8.3cm, no lymph or organ mets, but extracapsular sinus fat and micro vasuclar renal pelvis invasion. Furhman grade 2 with focal areas of 3 (sorry messed up stage/grade wording earlier haha too confusing). Scales suggest I'm med/high risk for cancer return - the sorafenib trial is testing for a reduction in recurrences. Runs for three years... lots to think about. As lonI'm running g as I think quickly because I am going overseas and am running out of time for trial inclusion. I have also now been flicked across for genetic testing... finally we are being listened too and not just sent on our way and told we read way too much!

Hans Peter I am keeping posistive for you too and wish you all the best for pending scans... whatever happens you can always come here and talk it over :) Your comment about nutrition pricked my attention... I have been quite passive with this so far and short of sensible protein and salt intake, I have not changed my diet at all! Regarding staying in good shappe... I am happy to announce my return to the exercise arena last week! Keeping it pretty low key mind you, but am having a ball in my barre (yoga/ballet/pilates) class full of pre and post natal mums :)

How do I go back and find your old posts fox? Wow I bet you are so grateful for your trial. Think I'm pretty limited for trials due to stage of disease, but I'm investigating as much as I can. The only one i fit that i have found so far is the SORCE trial. Alice I did ask the question today about effects on later treatment... responses were positive, but some equivocal. I am not aware of the votrient/placebo trial for recurrence either... so will look into that thank you! You are absolutely right, our arsenal is building rapidly. My partner thought it wise to crack a joke today when the oncologist said that if we had to have cancer, this was the type you would choose and in this time. My partner decided that the specialist was in fact wrong. If he chose cancer it would be in the future :)

Goyler greg you're not wrong... we are so fortunate in the big scheme of things! Your story does progress very similar to mine indeed. I wish you all the best for surgery. And if it's any comfort... my open radical was almost text book and I was sent home on day 4 following surgery. Clearly, the same is going to happen to you ;) Good luck!!

Errr... OK so there goes almost an hour again... this place is very time consuming! So one thing about me that I forgot to mention... I struggle to keep anything short and so almost every time I speak it's like reading a new freaking essay! Heads up for if you see my posts in future... don't open unless you've a day to read! :) Cheers guys and girls. I'm very grateful for your kind words and thoughts. All the best, Melissa :)

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

Hi Melissa,

I'm sorry my greeting trails the others by so much, was away from most technology for a few days, kinda nice actually. At any rate, I would like to welcome you and your partner to the club, those that share our journeys are as welcome as the patients, its important that we support them as they support us. I believe most here lurked for awhile before joining in, that's actually one of the good things about sites like this in my opinion, you can glean hope, support, and knowledge without the issues of fear, self confidence, etc. that can be a big part of face to face. We hope to hear from everyone out there, but its ok if we don't, they're still a welcome part of the group. I can tell by your posts that you have a good sense of self, a good sense of humor, and you are cultivating a positive attitude, this will serve you well in the months, years and decades that now lay before you, you are a survivor. Don't worry about length, size certainly doesn't matter here.

The best back atcha,

Gary

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Melissa, I believe there is a "search" function on the top of the page. I haven't tried it, but, it probably works. There have been alot of posts this past year. I kind of forget all the volume and how far back some topics have been.

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

Melissa, if you're wanting to home in on the writings of the redoubtable foxman, here's an effective way of doing it:

On the screen where the kidney cancer threads are listed (which is where you just clicked on the name of this thread to get to this screen) there's a search box at top right. If you type in there "MDX-1106" it will take you to lists of threads where MDX-1106 is mentioned. (At the bottom of the screen, there is a list of pages and you can click there to take you to further pages.)

Scan through the list of threads. What you're particularly interested in is Fox's series of threads entitled MDX-1106 - we're up to part 5 at present and I look forward to seeing what's in part 100. [He and I both - we each had prognoses that made it possible that neither of us would still be alive by this time!]

When you've selected a thread, e.g. MDX-1106 part 5, you can pick out Fox's contributions by a targeted search, using the 'Find' facility - in Windows 7 (which you're most likely using-?) you get to this by holding down your control key (probably at bottom left of your keyboard) and pressing the F key (for Find). That will open a small box (probably at bottom left of your window) and you need to type in there "foxhd". Just to the right of the box are navigation keys - if you click on 'Next' you'll start hitting Fox's posts and you can keep clicking 'Next' to get to his next post (except when someone replying to him, or referring to him - that happens often :)writes 'foxhd').

Another way you might want to investigate is just to type "foxhd" into the search box instead of MDX-1106 and you'll locate many Foxy oeuvres - always worth reading for information, humour, creative originality and elegance of expression.

By the way, do accept Gary's re-assurance that you shouldn't worry about writing at length, but if you're still concerned you could try to copy me and always be terse ;-)

movingonnow's picture
movingonnow
Posts: 6
Joined: Aug 2012

Hanno -

So good to express yourself. Keep strong - keep your faith. Know you are supported.

I'm a 55 year old male, healthy, take excellent care of self. A year ago I was diagnosed with RCC/stage IV/metastasised to lungs - the image of my lungs looked like the Milky Way. Weezing and could hardly utter a word without coughing I began the IL-2 series of treatments and was fortunate to have remarkable results. Kidney with 9.5 cm tumor removed 7/24/12. Still have cancer cells in body - at least confirmed in some lymph nodes, but the IL-2 may keep the cancer in check - so says the oncologist only a day ago. So know that good things can happen, healing is real and attainable. Keep strong, keep your faith, nourish and feed from your support group. Know you can heal. Peace and strength to you.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Great expression for knowing how to kick cancer butt. I hope to be able to say the same thing in 10-20 years. People need to know how to move forward. I don't think you can even concieve of not staying healthy. Way to go.

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Great expression for knowing how to kick cancer butt. I hope to be able to say the same thing in 10-20 years. People need to know how to move forward. I don't think you can even concieve of not staying healthy. Way to go.

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

No way do we recruit. You have been Shanghaied by the boogeyman. Personally, I'd love to see this club wither on the vine. But as long as we are here now, keep up the sharing, good news, funny stories, medical info, etc.

Side bar-42 years ago today, I was working on having my second child, who just wanted to stay warm and cozy. The open surgery for the nephrectomy was lots worse.
donna_lee

Eliezer2
Posts: 56
Joined: Aug 2012

I am a Stage 4 RCC (clear cell) guy, age 61. I am also working at several jobs, and I am the only person in my whole place of work who can do 40 pushups; and I have mets in my lungs! I also agree that the emotional side is the toughest part of coping.

Here are some thoughts.

The first few weeks after discovering the problem are the toughest. Trust me, it then gets easier. The scariest part is the word "cancer." Then after a few weeks, you realize it is just a word. And you realize that there is life after contracting cancer.

Some tips:

As soon as you can, return to work or some other form of occupation and fill your time. Staring at the walls makes the disease a hundred times worse. Staying busy also takes your attention away from any physical discomforts you have.

Exercise, mildly. Keep your muscle tone good. Fitness not only improves your mood but may make your body better capable of coping.

I find it comforting to have my "affairs," including "financial affairs," in order. Then I have one less set of issues to worry about and can concentrate on other things. Do it NOT because you expect to drop dead any time soon but to feel more confident that this set of issues is under control and your dependents are cared for. Then get on with better things!

Cancer sucks, but there are so many other worse things in the world. I take comfort in remembering that I prefer cancer a hundred times over anything bad happening to my children. Maybe it is just me, but I find that remembering how many worse things there can be in life is strangely comforting. Consider helping out someone in worse condition or worse circumstances than youself! Trust me, there is no shortage.

Laugh. Joke. Especially about cancer. Laughter releases good hormones and helps you keep perspective. Watch funny movies.

Spill your guts, if not to friends or family then to your internet pen pals.

If you are so of a mind, pray. Converse with the Big Fella upstairs. It has been proven scientifically that it does not hurt.

Do things you get pleasure from doing, including all those things you never found time to do. Take banjo lessons, read all the plays of Shakespeare, learn line dancing, re-watch your favorite TV show from the 60s, take up pottery. How about that trip to Paris you always planned? Spend a few days and contemplate seriously what gives you pleasure, what you like doing, and then do those things.

If you sit around depressed and moping, you are letting the disease defeat you and you are losing part of the life you have been granted. Life for everyone is over all too soon so why waste the time one has on moping?

Remember that the science and technology are improving so rapidly that every week there are new developments and treatments and technology. You just need one of these to be right for you!

Start to write out your memories and memoirs. Write down anecdotes from your life, especially funny ones.

Take naps during the day.

I once saw an interview with "Mister T," you know - the giant boxer actor who played the character "BA" on the A Team show. He was describing his own battle with cancer (I think lymphoma). Watching that had an incredible effect on me. I sat there and said, Hey if this disease can even afflict Mister T, and he is battling it, then who the hell am I to give up??!!

Consider all the people who died during their teens, twenties and thirties and then consider the fact that you have been granted a long valuable life that is not over yet, one far exceeding what so many others were allowed by providence to enjoy. Instead of feeling sorry for yourself, feel sorry for them and celebrate the fact that you have out-lasted them. (I am not suggesting Schadenfreude but genuine gratitude.) Make a list of world famous people who did not last as long as you already have!

Hope some of that helps!

foxhd's picture
foxhd
Posts: 1855
Joined: Oct 2011

Gee, it seems that you fit right in to our "Kick cancers ass club". Eliezer2, you have your head on straight. But ,..learn to play the banjo?.....thats funny. I was thinking bagpipes but changed my mind. lol. You have highlighted the consistant beliefs of us "experienced" cancer recoverers. Keep up the great work. Just one question, "What, not motorcycle?"
Fox.

Eliezer2
Posts: 56
Joined: Aug 2012

Lots of cool bathtub toys though!

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

Back from Bali and reading these old replies... this one is a beauty - it filled me with positive energy and hope at the perfect time. I am very grateful for your advice, not to mention your humour - banjos and Mr T my goodness how i did smile :

Sending my warmest thoughts to you all and thank you for your time taken to reply.

Mel

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