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Where is everyone gone?

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

Just making sure everyone is ok?  I know a few of you have some big scans/tests coming up and I wanted to see how you were doing.....

eims x

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Eims, you ARE a good person..!  Well, I for one am right here..  Had the CT yesterday and of course the obligiatory arm stabbing to go with it (blood tests).  Tomorrow I get the results..  Oh yes and later today, the new drugs Inlyta show up. 

I do suspect / hope that many are moving forward and living.   Thus we may not see some until their next 90 day or 6 month scan time.  This is good..

Take care..!!

Ron

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Good luck with your results Ron x

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

thinking of you ron...good luck x

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

Woman sues hospital for husband's lack of sex drive.
 
A recent article in the Kentucky Post reported that a woman, Anne
Maynard, has sued St Luke's hospital. She says that, "after her husband
was treated there recently, he lost all interest in sex".
 
Asked about St. Luke’s reaction to the suit, a spokesman for the
hospital replied, "Mr. Maynard was actually admitted in Ophthalmology. 
All we did was correct his eyesight."

 

YES!!! I'm still here

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Ah Gary.. that one was bad...  :)

Ron

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

 

You're a Blessing in Disguise Gary!

 

Djinnie x

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Hey Eims, 

You should let us know how your scans went, it has been over a week now! I think Michael's tests are coming up this week, so if you are on here Michael we wish you all the best, let us know how you got on.

Ron all the best with your results tomorrow, and with your new meds:) By the way have you kept that stylish look of yours!

 

Djinnie x

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Inlyta you say....as you probably know elevated BP is one of the things they look for.  Supposedly some rise in BP indicates the drug is working...too much and they pull it.  The first time I was on it I monitored my BP at home... it spiked and I came off the drug.  After a time on Afinitor and a change in oncologist we circled back to Inlyta.  Because....wait for it......seems I was taking my BP wrong and that accounted for the elevated readings....operator error!  So now I'm back on Inlyta 5mg twice a day.  BP is up but under control....as my oncologist said when I expressed concern about elevated BP causing me to come off the drug a second time....   "... we have lots of ways to deal with high blood pressure...and only a few ways to fight renal cell carcinoma... if the Inlyta works for you we aren't going to let high blood pressure stop you."   No Prisoners!

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

  "... we have lots of ways to deal with high blood pressure...and only a few ways to fight renal cell carcinoma... if the Inlyta works for you we aren't going to let high blood pressure stop you."   No Prisoners!

If only the same thing applied to LFTs! Alas, for the likes of Ron and myself, it doesn't  :-(

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

Does LFT mean Mr Wedge? x

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Thanks Gordon Charles..!  I was just reading about your first try on Inlyta.. hope this time your results are much better..!   I now have two BP machines at home, and the one was tested and consistently read high..  Guess some are better than others.  So, my new machine is more accurate, plus it has internal memory to record like a few hundred tests.  This lets me share data with my Drs and now the Drs can make better decisions for me this way.  I had a definitive BP pattern on the Votrient.   Will now see what happens on the Inlyta.

Be Well All..!

Ron

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

I am still here :D Still reading.....still pissed at my diagnosis lol but still here x x x

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

miashelle pissed is good cos thats fightin' talk!!!!

 

eims x

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Hi ya Miashelle... FYI, when I read your name here.. I begin to sing the olde Beatles song... Michelle, my Belle..  :)  Hang in there.. and I agree being pissed is a good thing...  put on the boxing gloves and fight..!!

 

LFT = Liver Function..  some of us have very sensitive Livers...  Did you know that..  "There must be 50 ways to love your Liver.?".     I do not mind being sensitive, but a sensitive Liver is not good for fighting RCC.  But my boxing gloves are on...

Hang in there young lady..!  Keep us posted... we do care..!

 

Ron

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Yesterday must have been national scan day.  Mixed bag.   No more IL-2 moving to Votrient.

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

hey faithlou,  glad you are still here ;-)

eims x

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

Who are your everyones Elms since i am not sure what you mean,for me on CSN every single person here  is equal or the same since we all either have cancer or are a caregiver to some one who has it,good luck on your upcoming scans.

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

hi limelife,  everyone is everyone......just my way of checking on everyone, oldies and newbies combined.  some have been very quiet lately and i just wanted to seeing if all our "club" members were ok....

 

eims x

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

I've been here, still reading eeveryone's post with my mom:)

maybe it really was international scan day yesterday! My mom had her chest, abdo, pelvis yesterday too. She was very pleased to not have to drink that thick white oral contrast, but a different one that just looked and tasted like fruit punch snapple!

we are meeting with our concologist to stater votrient Thursday. Wish us luck! 

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

hey eskimo lily,  does a fruit punch snappie taste like pernod??  thats what mine tastes like but next time they said i could bring some cordial to soften the flavour!!  good luck to your mam and yourself for thursday....

eims x

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

After losing much time after my IL-2 treatments, I'm trying to catch up on the things I've missed. Like yard work, golf, and squeezing as much summer into these last few weeks. I'm anticipating good results and therefore going back in for a couple more weeks of IL-2 shortly. That will wipe me out for the fall. Hard to be everywhere. Here is where we need newbies to be more active.

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

mom and I had no idea what Pernod is, we had to look it up! But she said it was a very mild flavor and didnt bother her at all :)

 

good news is her MRI of her brain to check for mets was negative (yaaaay!!!) and her ct scans showed her mets look about the same as they did in July before surgery. She's been on votrient for 5 days now and the only side effect is slightly raised bp (systolic 140s). Thanks for your well wishes eims!

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

We are still here. Blkjak's next scan is in a few weeks, and we are praying for more shrinkage!

BLKJAK
Posts: 108
Joined: Apr 2013

We are still chugging along. Next CT scan is on Sept. 23rd, then we meet with the Onc on the 24th. Had a blood test last week that was perfectly normal so the Votrient isn't making my liver angry. I figure the scanxiety will start in another week. Friggin' RCC!

anmazon's picture
anmazon
Posts: 128
Joined: Jun 2013

Jacked, but present.

Annie

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Ah Annie... your presence is a present..!  :)

Ron

anmazon's picture
anmazon
Posts: 128
Joined: Jun 2013

Yer making me blush!

Might wanna mark your calendar--last time this occurred (blushing) was about 42 years ago.

Thank you.

Annie

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Annie.. glad I got you to blush..!!   Heck, I did not blush that second day after my surgery last year... I got up to use a portable commode.. shuffle shuffle my feet got next to the commode, the nurse took off my gown.. I sat down..  But I then figured out I was standing naked in front of a very large window, just near the gardens where there were a lot of people... hope they got a good show..!!!  :)

Ron

anmazon's picture
anmazon
Posts: 128
Joined: Jun 2013

You've inspired me! If I have to go back in the hospital, I'll definitely have to ask for a room with a better view.

He he he he he!

Annie

I am alive
Posts: 219
Joined: Jul 2012

Scans coming up on the 19th. Meet w/the doc on the 24th. Daughter leaves tomorrow for a semester abroad which, let's face it folks, is stressful for mom & dad. So I'm going to go into lock down, full steam ahead mode - that means plan fun activities, day trips, dinners/movies out, walks with friends, projects around the house. Im going to keep busy & moving forward. Not alow too much down time to think scary thoughts or dwell on scenarios that may not be a reality. I'll probably get testy at times (poor hubby). But I will not be trolling here that often in the coming weeks. Just works for me at this point in my journey to lay low here and spend more time out & about, dancing in the daylight. If you know what I mean. Here's a Buddhist saying that I think really relates to us: "The secret of health for both mind and body is not to mourn for the past, worry about the future or anticipate troubles, but to live in the present moment wisely and earnestly." Easier said than done of course, but a worthy goal. Shalom y'all!

Stros2013's picture
Stros2013
Posts: 30
Joined: Aug 2012

Eims,

 

thanks for checking.  I'm lurking in the background...... reading posts.  

Where I can offer,  I'm posting.

quarterly scans coming in three weeks.  it'll be nice to see what the spots in my right lung (that showed on last scan In July)

have been up to.

 

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

A little battered, but still here.

End ed up in the ER with acute bronchitis....misserable! Found out Tuesday I didn't qualify for a  trial drug,but did qualify for a trial MRI. Declined on Wed. Saw a pulmonaologist yesterday, he put me  on many more new drugs as I was coughing up blood. My oncologist figured that was from the cancerous tumors in my chest area. The pulmonaologist is leaning more on the side of the blood is showing up because of how hard and constant I'm coughing....he wants to control the cough by the 18th before he jumps into a bronoscopy.

Won't be starting Votrient until after the 18th when the pulmonary guy clears me.

Never a dull moment around my house :)

GSRon's picture
GSRon
Posts: 1185
Joined: Jan 2013

Hi Baaa-bs..!  Hope your cough clears up FAST..!   And I hope the big "V" works for you..!  I really am going to miss the Votrient, it sure kicked the Mets A$$ big time for me... hope it does for you, without all the Liver issues..!   Hang in there... keep us posted..!!  Sending thoughts and prayers your way..!

Ron

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

Just want to endorse Ron's remarks and associate myself with his good wishes to you!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

I have my scans coming up on the 17th September and an ultrasound on the 23rd. Then hopefully it will just be X-rays and ultrasounds for future check ups.

 

Djinnie x

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

I'm still here.  Got blood drawn today and will see my primary care doc next Thurs.  I don't have my next CT until the second week in Oct.  I'll see my Urologist on the 15th of this month.  Doing pretty good.  Still tired and having weird "zapping" pain on my left side low in the abdomen and in my left thigh...also have a cough that started up a week or so ago and won't go away, but....as Mary Todd Lincoln said...."other than that one little incident, the play was quite enjoyable!"  Y'all all take care and I'll be sending good thoughts, white light, prayers, whatever it takes, for all of your treatments to do nothing but good and kick this monster's ass all over the place!

on a happier note, I have gone back out to my studio and have been melting glass and making beads!  This is the first time I've had the inclination to be creative again.  Heck, I might even start a stained glass window if this creative burst continues.  Sure feels good to want to create again.

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

oooooo tillie will you show us some pics of your work....pleeeeeeasssse x

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

 

If I could figure out how to post a photo or fifty, I would.  If any of you are on Facebook, I'm Tillie Smith O'Kelley on FB and I have a lot of my stained glass and some beads and some of my photography.....or you can go to to see some of my work and a picture of me BC. Undecided

http://www.picturetrail.com/homepage/hummingbirdhillsg

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

Tillie, you're a relative newcomer but even many old-timers here seem not to appreciate the fantastic wealth of facilities that CSN has laid on free for all of us.  I often encourage everyone who hasn't done so already to explore the site a bit. 

All of your present needs are well provided for if you go to your Profile page.  You can get there instantly by clicking on either your avatar or your user-name (TillieSOK in your case). 

That will give you a horizontal menu near the top of the screen, with focus (highlight in blue) on "My CSN Space".  If you then click on "Expressions" you'll open a screen which enables you to view or create sundry forms of expression.  You can select 'create: image' and thence upload pictures of your ocean photography, hair-style, glorious stained-glass work - from your library on your own computer.  (By the way - so glad to see creative, modern stained-glass art-works gaining more traction!).

I use that facility to put up my own amateur pics (taken on my iPhone) and I also utilise the 'create blog' option to store my medical records info (both for my own easy reference but also so that one or two folks here who are interested can see what's going on in my case - not an encouraging story, so most people would be much better skipping it! I've had some kind words said about a couple of my own photos and it could afford a great show-case for your art-works.

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

Thank you so much, Tex.  and thank you, too, djinnie.  I have two windows about half finished for the church in LA., and for a church in OK.  Plus one on my table here for the church I attend.  I'm just finally convinced that I am going to be fine and that I need to get my butt in gear and use my God-given gift.  I may make some beads with the kidney cancer ribbon on them.  I've seen both orange and green ribbons...which one really is for KC?  If I make them, I'll send each of you one. :)

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

You have a great attitude Tillie! and having at your very fingertips the ability to create such beauty, will be all the therapy you need. The beads sound like a great idea! I think the KC colour was changed from green to orange

Djinnie . 

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

Tillie, if you do find time to make those beads, please make a GREEN one for me - even if the consensus is for orange (my least favourite hue, especially since my urine turned that colour!).  As my Wife says "Anything's OK with you, so long as it's green!"

So, that's one for GREEN!

If you have any difficulty putting pictures of your work up on your profile pages, please do say and I'll be happy to take you through it in minute detail.  That way, we can all very easily have the pleasure of seeing it and you can add in items whenever you choose.

Before I forget, if you make a bead for me, please make it either

GREEN or

GREEN!

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Now Texas! do you have any lingering doubts about that! Lol!

Djinnie x

TillieSOK's picture
TillieSOK
Posts: 232
Joined: Jul 2013

 

Tex, did I understand that you want a GREEN one?  I wasn't sure I understood you correctly. HAHA!  I will make you one and send it to you if you will send me your address. It'll be nothing fancy, but it'll be from my heart to yours.  And I'm in favor of green also...I'm descended from Hines (Scots-Irish) Kelley (Irish) and I married an O'Kelley (IRISH!). I figure with my Kelley ancestors and my husband being an O'Kelley that we are probably related somewhere waaay back there somewhere.  My ancestors probably got caught stealing horses and dropped the "O" so they wouldn't be recognized. Laughing

 

Are you absolutely, positively sure you want green?  I can make it purple if you want. (Giggle). Pm me your address, please.

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

back in the days of the famine tillie many irish people dropped the "O" from their surnames so they could get on the famine ships out of ireland quicker!!  eg O'Byrne became Byrne so they were right up there as people were allowed onto the coffin ships alphabetically!!   but the stealing horses sounds amazing ;-)

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

Tillie, Your work is stunningly beautiful, thanks for putting it up there for us to see! 

 

Djinnie

Joe_fh
Posts: 47
Joined: Aug 2012

I am still alive and kicking. I know, I should check in more often.

foxhd's picture
foxhd
Posts: 1876
Joined: Oct 2011

Everyone comes to terms with their kidney cancer diagnosis. The panic partially pases. we have to wait for followup appointments and scans. Can't do much in the mean time. What do we have to say? So we wait. Try to move forward. I still maintain that it is necessary to live on. Those of us who have been here awhile realize that we ain't dead yet. Don't waste energy on the negative. Being active, enjoying friends and family is a priority. Whether it is hitting a golf ball, riding a motorcycle, or working in a garden. We don't get daily reports. So LIVE ON!!!! It gets quiet doing this. We are not going to discuss aches and pains all the time. Or any of the craziness related to cancer. This is the Cancer Survivors Network! .....I do hear there is a web site for those who no longer are living on. It is the "Damn, I wish I hadn't wasted my time worrying" website. So things do get quiet time to time. Then the cycle repeats itself and we can't keep up with all the changes going on. Praise quiet times. They don't last.

donna_lee's picture
donna_lee
Posts: 394
Joined: Feb 2009

A recent human interest story was written about Mike Riley, head football coach at Oregon State University, and published in The Oregonian.  To shorten and paraphrase: He hasn't won every football game of his career, but early on, his wife had asked him to be there for his own children after work.  That meant coming home, late sometimes, for dinner and spending time with his 2 kids.  He said you can choose to be moody, or not.  But don't impose your bad moods on everyone around you.

So yes, we all get anxious, fearful of the next test and what the results may bring, but don't go all moody on us.  Nobody benefits, especially the one with the Baaaaaad Mood.

Donna

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

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