NED no more :(

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Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    NewDay said:

    Hey MedScanMan!

    Hey MedScanMan!

    Sooo glad to see you back.  You get worried when someone drops off that things may have taken a turn for the worse.  What a relief!  I do have a question.  Why is it that you can have a two page scan report that mentions densities in the lungs, a calcification in the liver, foci in the uterus and miscellaneous things and then your next scan says absolutely nothing.  It just makes you suspicious that the radiologist was too lazy to do a thorough report which then makes you wonder if there wasn't something there and he missed it.  Just wondered.

    Ron, DSFrey, Eliezer2, Gary, Donna, JoJo, Fox, Tillie, Djinnie, David, Jan, Todd, Brea, Jeff, and Limelife, look at all the people that took the time to encourage me.  Thanks so much to all of you.  It makes such a difference to know there are people who understand and care.

    As far as eating better, I can say that I'm eating more.  I did gain some weight back, but still have gastroparesis so I can't eat much.  I'm afraid I can't claim to be eating better.  That is a new year's resolution that hasn't come ot pass yet.  To make it worse, my new doc says he needs me to put on some weight, I guess because he said I can expect some nausea with the Votrient.  So, now I'm taking in cholcolates and chocolate donuts.  There must be a healthier way to put weight on when you can't each much. I'm sure Neil could offer some advice.

    Thank you all again,

    Kathy

    Putting on weight

    Hi Kathy.  Even though I advocate a low carb diet that does not mean a "no-carb" diet.  There are healthy carbs that are good for you and will allow you to put on weight - if combined with a healthy mix of proteins and fat.  Healthy carbs are non-starchy vegatables (all the green leafy ones for example).  However, you can add some potatoes or rice to the mix (pure starch for the most part) and see what amount allows you to put on weight and/or maintain your current weight.  What I do advise against are too many grains (whole or not) and cereals.  And, of course, no added sugar(s), etc.

    BTW, one or two squares of 70% chocolate is a perfectly fine way to end a meal. If there is not too much sugar in the mix chocolate and cocoa actually have anti-cancer properties that are well worth exploiting.

    Regardless, each of us is different.  You just have to do some experimenting to see what your body metabolism may turn out to be.  But if you understand how various carbs (especially sugars) modulate how your body adds fat you can then plan accordingly.

    When I first started out to change my diet my weight was 165 lbs (I am 5' 8").  After following a low carb diet I lost 35 lbs over the course of several months.  When I got down to 130 lbs I decided that was enough and then experimented to see if I could add back 5 lbs following this approach.  At this point I average 135 lbs.  My wife is the happiest because we now eat all sorts of (grass fed) meats with our veggies and cook in healthy saturated fats like coconut oil, butter, and yes, even beef tallow.  It's delicious.  The biggest sacrifice?  No bread and no pasta.

  • danbren2
    danbren2 Member Posts: 311
    Kathy Keep Fighting!

    Kathy,

         Please hang in there and realize you have so many fighting for you!  When things seem to get you down, this is the place to come to get your pick up! We are all in the same boat and realize the emotions are on a never ending up and down!  Wishing and praying for the best for you!

                                            Love and prayers of good health!

                                              Brenda

  • GSRon
    GSRon Member Posts: 1,303 Member
    NewDay said:

    Hey MedScanMan!

    Hey MedScanMan!

    Sooo glad to see you back.  You get worried when someone drops off that things may have taken a turn for the worse.  What a relief!  I do have a question.  Why is it that you can have a two page scan report that mentions densities in the lungs, a calcification in the liver, foci in the uterus and miscellaneous things and then your next scan says absolutely nothing.  It just makes you suspicious that the radiologist was too lazy to do a thorough report which then makes you wonder if there wasn't something there and he missed it.  Just wondered.

    Ron, DSFrey, Eliezer2, Gary, Donna, JoJo, Fox, Tillie, Djinnie, David, Jan, Todd, Brea, Jeff, and Limelife, look at all the people that took the time to encourage me.  Thanks so much to all of you.  It makes such a difference to know there are people who understand and care.

    As far as eating better, I can say that I'm eating more.  I did gain some weight back, but still have gastroparesis so I can't eat much.  I'm afraid I can't claim to be eating better.  That is a new year's resolution that hasn't come ot pass yet.  To make it worse, my new doc says he needs me to put on some weight, I guess because he said I can expect some nausea with the Votrient.  So, now I'm taking in cholcolates and chocolate donuts.  There must be a healthier way to put weight on when you can't each much. I'm sure Neil could offer some advice.

    Thank you all again,

    Kathy

    Kathy... I forgot to

    Kathy... I forgot to mention.. I see you have your best pal and supporter sitting there on your lap..!  I bet he rarely leaves your side... Laughing

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member
    danbren2 said:

    Kathy Keep Fighting!

    Kathy,

         Please hang in there and realize you have so many fighting for you!  When things seem to get you down, this is the place to come to get your pick up! We are all in the same boat and realize the emotions are on a never ending up and down!  Wishing and praying for the best for you!

                                            Love and prayers of good health!

                                              Brenda

    None of us

    are going away Kathy. Just hang on to the Karma and take what you need. There is plenty for all. It's kinda funny. The more Karma you take, the more there is left for others.

  • alice124
    alice124 Member Posts: 896 Member

    Too much Time Away

    Lots of old friends on this thread.  Fox, David, and............... Kathy.........................look what you've been going through.  I think I've been away too long.  Michael, Iceman and I know for sure Alice is lurking in the wind somewhere. Brea still praying for everyone.  Hope you guys didn't send me down for the "dirt nap".  I've been here.  Keeping up and handling some family business.  If you'll allow me I'd like to get back to some of this family business.  I've missed you guys.  Cannot tell you how sorry I was when I signed on and got the news about Tex.  Heartbreaking.  I will miss him so. 

    So, how's everybody feeling?  Anybody in the mood for some inside info so you can take my thoughts in to your Dr's office.....spend a ittle time slapping him around like the old days? They hate when you know more than they do.   Make yourself feel good.  We were always good at that.  Anyway, I feel back.  Hey......and that Roller Coaster crap..............I grew up going to sleep with the Cyclone every night. 

    Love to you all

    Jeff

    Good to see you back!

    Jeff - So good to see you back. For those of you who haven't had the pleasure, Jeff is a wonderful resource.  When he was here earlier, we soaked him to the bone with questions about scans, MRI's, and medical jargon, foreign to many of us. Honestly, I didn't blame him for going MIA. Anyway, glad you're back Jeff. 

  • garym
    garym Member Posts: 1,647
    NewDay said:

    Update

    Hi all,

    Thank you so much for posting.  It really makes me not feel so alone, especially since I live alone.

    I met my new oncologist today.  At least he has an aggressive plan.  He will send for my scans from MDA so that they can determine if the size and position of the lung tumors is such that they can biopsy it.  He wants to be sure it is the RCC and not a second cancer occurring or we could be treating the wrong thing.  I have read some posts where people here have had more than one type of cancer.  He is also going to send for my tumor block, if there is any left, and have it sent for genetic testing.  That may help narrow down the type of treatment I should get.  In the mean time, I will start on Votrient.  He thinks I will qualify for some trials.  He pointed out that, because my tumor is so rare, they  have no way right now of knowing what will work.  At least I feel he is doing all that can be done.  He wants me to meet with the nurse that specializes in counseling patients regarding planning for when time starts running out.  It is unpleasant to think about but I think it is important to do and then try to put it aside and get back to the business of living.

    Thanks again for your support.   You are aweome!  I'm still hangin' in there.

    Kathy

    Soon to be NED once more...

    Hi Kathy,

    You know what they say "Its not the size of the dog in the fight, its the size of the fight in the dog!"  You've got this and we've got you, hang in there kiddo!

  • NewDay
    NewDay Member Posts: 272
    garym said:

    Soon to be NED once more...

    Hi Kathy,

    You know what they say "Its not the size of the dog in the fight, its the size of the fight in the dog!"  You've got this and we've got you, hang in there kiddo!

    So far so good

    Thanks Gary and others,

    I started my Votrient last week and Had a brain scan today.  No SE's so far.

  • garym
    garym Member Posts: 1,647
    alice124 said:

    Good to see you back!

    Jeff - So good to see you back. For those of you who haven't had the pleasure, Jeff is a wonderful resource.  When he was here earlier, we soaked him to the bone with questions about scans, MRI's, and medical jargon, foreign to many of us. Honestly, I didn't blame him for going MIA. Anyway, glad you're back Jeff. 

    Good to see you back!

    Ditto!!! Alice, I can't tell you how much I've missed youSmile

  • cran1
    cran1 Member Posts: 139
    Hang in there Newday. My

    Hang in there Newday. My thoughts are with you.

  • angec
    angec Member Posts: 924 Member
    Sorry to hear!

    Sorry to hear about your lung mets.  I just wanted to say that I am glad that you started on Votrient.  The reason being that my mom, now 81, had several mets in both lungs, and some other areas, she is also "unclassified". Well, as you may remember, she started on Votrient in December of 2012.  So far all is gone is except for one lung met which remains stable. So I think Votrient is the right way to go! Glad you are not having any side affects, Kathy. What dose did you start at?  Be sure to ask away if you have any questions. You have been so strong and upbuilding to everyone here and we are all in your corner. I think you will do just fine! :)   I will always remember the saying "do it afraid."  It makes perfect sense!  XXOO

     

    Welcome back, Alice and Scanman!

    Scanman....TW was asking for you not too long ago, wondering how you were doing.  He missed you!

  • GSRon
    GSRon Member Posts: 1,303 Member
    angec said:

    Sorry to hear!

    Sorry to hear about your lung mets.  I just wanted to say that I am glad that you started on Votrient.  The reason being that my mom, now 81, had several mets in both lungs, and some other areas, she is also "unclassified". Well, as you may remember, she started on Votrient in December of 2012.  So far all is gone is except for one lung met which remains stable. So I think Votrient is the right way to go! Glad you are not having any side affects, Kathy. What dose did you start at?  Be sure to ask away if you have any questions. You have been so strong and upbuilding to everyone here and we are all in your corner. I think you will do just fine! :)   I will always remember the saying "do it afraid."  It makes perfect sense!  XXOO

     

    Welcome back, Alice and Scanman!

    Scanman....TW was asking for you not too long ago, wondering how you were doing.  He missed you!

    Hi again Kathy..  I did a

    Hi again Kathy..  I did a short stint with Votrient.. I think it is a good choice for you.  It is often pretty easy... you did need regular blood tests to check for elevated Liver enzymes, and you need to check your blood pressure daily, twice daily even better.  Otherwise, expect some diarrhea and fatigue.  Hopefully nothing worse than that...  I see that Votrient is now being tested for other types of Cancers, which is another reason I think this is a good option..

    I understand living alone.. me too... so we are our own Caregiver and cheerleaders... except I have ugly legs.. heh...  Oh and you have your best pal there...  Maybe time I get a pet again...

    Hang in there and holler at us any time...

    Ron