MAMALAMA has been absent

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MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 2/19/2016 5:05 PM (GMT -6)   
ML MAY be missing again for a bit.

Next week I have my initial visit at MD ANDERSON CANCER CENTER. They don't treat appendix cancer many places and this center has been highly recommended.

Since we have been through this type of journey with Mike's liver transplant at U Miami/Jackson Transplant Center we know to be patient.

My coordinator has been very helpful and I can't say enough nice things about the on campus travel folks!!!

Short version...I'll check in when I can. I my need surgery but not this time...this time is tests, labs, and planning.

Off to Houston, ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

stu58
New Member


Date Joined Feb 2016
Total Posts : 19
   Posted 2/19/2016 6:42 PM (GMT -6)   
May every thing go well for you MamaLama. I'm a Cancer survivor (Prostate) and it hit me at age 50 . I had the DaVinci machine surgery and I'm cancer free now for almost 6 years.
Prayers for you.

Stu

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/20/2016 7:09 AM (GMT -6)   
Hey ML, Good to know you're seeing the specialists at MD Anderson.
Godspeed. Our thoughts and prayers are with you.

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 2/20/2016 8:53 PM (GMT -6)   
stay tough

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 2/20/2016 9:12 PM (GMT -6)   
Thx folks. ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 2/21/2016 8:56 AM (GMT -6)   
You are in our thoughts.
I hope you are sleeping and eating well and feeling the best that you can.
You are such a great champion for all of us here.
Best regards.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 2/23/2016 2:44 PM (GMT -6)   
So I am in Houston at MD Anderson. They have tested me up and down and disagree with my FL surgeon. They feel that the FL surgeon excised the tumor and muscin. They compared my ct scan from before the appendectomy and now and find no indiation that there is muscin ourside the bowel, kidneys, liver, etc. They are concerned about a large cyst in my pancreas, but another doc has biopsied that several months ago and is keeping watch there. The plan is for me to return to MD Anderson next February to do more scans (I can't wait as the contrast you drink is AWFUL, worse than the regular stuff...ha ha...sorry attempt at humor). There could be straggling cells in the perineum that could blossom over time, so it is good they will check again.

Back to FL tomorrow as the RODEO comes to town here. 10 million are expected to visit in the next 10 days..best to get out of here before gridlock sets in. I'll be back on my computer tomorrow night. I am in the lobby at my hotel checkin in on you all. Hugs, ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

themiz
Forum Moderator


Date Joined Feb 2013
Total Posts : 1891
   Posted 2/23/2016 3:59 PM (GMT -6)   
This is GREAT news, Mama! So happy you are clear for a year. You are missed and I am thankful for this news. Big Hugs
themiz-Forum Moderator-Hepatitis
Wife of themister, a fine man living with ESLD. Transplant list-2013

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” Kahlil Gibran

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/24/2016 10:25 AM (GMT -6)   
Hey ML, Great Stuff! You must be so glad to have made the trip.
I thought most of the oral contrast used currently is gastrografin...usually mixed in something like crystal light...usually not too bad, but probably not something you'd want to pay extra for...hahaha
Did they give you barium or some other awful concoction?

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 2/24/2016 10:40 AM (GMT -6)   
Some other stuff...it burned my tongue, no crystal lite, and it was kinda thick. And the rectal stuff was as effective as a colonoscopy prep...yuk. ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 2/26/2016 3:54:07 PM (GMT-7)


woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 2/24/2016 11:31 AM (GMT -6)   
Ugh...and both ends no less.
Well, at least you got good news and a bit of a respite for another year.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 5/24/2016 8:53 AM (GMT -6)   
Have been irregular again in posting and I thank all of you for supporting each other.

Three weeks ago I had a fecal transplant to rid my colon of C Diff once and for all. It hasn't been as smooth going as the docs led me to believe. I continue to have Colitis symptoms and alternating constipation and diarrhea. And pain. At this point I don't know yet if I am "cured" or not. In another week they will do more tests. For now I have pain all the time and am sleeping 10 to 12 hours at night.

I did pull myself together to go to a wedding last weekend, but have been so tired since I returned home, I hardly DO anything.

So, I'm online reading all your posts but am counting on you members to support each other more than ever.

Feel free to step up and welcome newcomers etc.

Sorry to be going slowly.

Good luck to all on treatments...these meds were a long time coming...

I certainly have continued respect and awe for folks with liver disease who still post and carry on...I am a bit of a weakling I guess.

Hugs,

MamaLama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 5/24/2016 9:46:59 AM (GMT-6)


healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1772
   Posted 5/24/2016 10:32 PM (GMT -6)   
Oh Mamalama! I am so sorry you are struggling to get well. I will send healing thoughts for you. And I will jump in on the forum more often. Please please take care, rest, and get well.

Many big hugs,
Emma

mhump
Regular Member


Date Joined Mar 2016
Total Posts : 43
   Posted 5/25/2016 1:51 AM (GMT -6)   
Sorry to hear that you haven't been feeling well, get well and you know you are in my prayers...MHUMPP

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 5/25/2016 7:23 PM (GMT -6)   
Thanks folks! ML
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Dog LeDon
Regular Member


Date Joined Apr 2014
Total Posts : 191
   Posted 5/26/2016 4:10 PM (GMT -6)   
Bless your heart.
I hope you get to feeling better soon, mama.
Here's a big hug. :)

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 7/12/2016 3:53 PM (GMT -6)   
Hi all Hep forum members and guests,

We have been quiet lately...I miss you...

I am having surgery Monday the 18th. I'm not sure how this will work. I have 2 hernias that they will fix and then they will look around to see if my appendix tumor cells are replicating...some do and some don't. That came out Dec 7th 2015. I will be glad to have this done as I am in a lot of pain all the time.

One of the other forum moderators will check in here. I'd like you all to welcome new folks and take an extra minute to respond to those with questions.

Since we are catching up, Mike will be having back surgery in the fall. Several of his disks are pinching nerves and he has a lot of discomfort. He will wait until fall because he is doing 6 weeks of daily radiation on his face where they removed a squamous cell skin cancer a few weeks ago. Kinda bummer of a summer.

Best to you all,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

Post Edited (MamaLama) : 7/12/2016 7:51:53 PM (GMT-6)


Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5924
   Posted 7/12/2016 7:45 PM (GMT -6)   
Best of luck on your surgery, ML. I hope this will alleviate your pain and get you back on your feet. As far as your forum, I and other mods at HW will be checking for spammers here. I hope the regular posters can welcome any newbies and help answer their questions in the meantime. And if there are any problems, please know that you can send an alert to the Administrator from any post by clicking the icon with the exclamation point or email him (or me or any mod) from the envelope under our names. Gentle hugs and many prayers!

Lanie
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1772
   Posted 7/17/2016 10:08 AM (GMT -6)   
MamaLama,
Sending you tons of good wishes, healing thoughts, and powerful prayers for a successful surgery and smooth recovery.

Much love and big hugs,
Emma

lostwife2
Regular Member


Date Joined Aug 2012
Total Posts : 112
   Posted 8/14/2016 12:08 AM (GMT -6)   
Hey ML, I have not been on in over yr. So I'm trying to catch up and seen you have had some things going on. Hope you and Mike are doing better now. How is your sister doing? Well take care will pop back when I can.
Dorothy

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/15/2016 8:37 AM (GMT -6)   
Hi to all our HW friends.

I have not been on my computer for a month...have not even opened my laptop. Any messages or emails from me to family, friends, etc have been from tablet or phone...with more typos than every.

I had a simple hernia surgery on July 18th and it lay me low...again. Starting to feel better...and thus the computer has been turned on!!! I thought I would have to go to Texas for the hernia surgery at MD Anderson, but Dr. Fournier allowed me to have it locally since it was in groin.

The local surgeon checked out my appendix site and found no new mucinous cystadenoma type cells...though everyone tells me that it is slow growing...not to get too excited. Still don't have to return to cancer center until next February.

Things are quiet on the site. Please know that I am checking daily on my phone and maybe now, will be checking on the computer where I can send a more sensible response.

Hoping you all are getting Hep C treatment, waiting for your transplants, getting your AIH meds under control, etc. Let's hear a status from all of you.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

woofer5
Regular Member


Date Joined Jul 2015
Total Posts : 87
   Posted 8/18/2016 3:19 PM (GMT -6)   
Hey ML...so sorry for what you've been through and going through.
I haven't been around much lately either.
I'm glad to hear...at least you're "starting to feel better".
My thoughts and prayers are with you.
And best of luck to Mike on his upcoming back surgery.

Been a bummer summer for me too, but I'll start my own thread on that stuff.

Hope all the newbies are doing well either starting or getting ready to start treatment.

Take care all.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/23/2016 11:52 AM (GMT -6)   
Hi all, computer on again...so I can return to using caps and punctuation that is too confusing on my phone. Five weeks since hernia surgery and I'm feeling quite good, though I have not, until today, actually begun posting like the old days. Let's see how this goes.

We still need someone to step up to the heavy lifting for meeting and greeting folks so I can be a loyal alum and one of you can be the head cheese.

Haven't heard much from themiz since themister had his surgery. I hope they are getting into the swing of things.

I have follow up labs and scans this summer and am hoping that everything is quite with pancreas "cyst" and appendix tumor stuff. As I feel much better, just tired, so I am assuming I'm okay. In looking over my med file to bring to the pancreas doctor I saw that my AST and ALTs were in the 50s and 60s during all that hospital time last winter and no one cared to look into that...but they are back to normal so maybe I was just ALL messed up.

Before getting sick I was allowing myself a glass of wine now and then, but have decided to join Mike and am 11 months alcohol free...maybe my AST and ALTs are happier this way. Oh, and I've lost 35 lbs. Maybe being ill has brought on a needed improvement in my over all health after all. I even did my exercise routine every day this past week.

Mike finishing last 8 radiation treatments on his face...the left cheek area is pretty red and inflamed. Hopefully there are no cancer cells roaming around in there now, though oncologist said it is likely to recur because of his antirejection drugs. He sees dermo every 2 months now for full body look about. He is having back surgery in the fall...to remove bone spurs in lower spine that are digging into nerves that go to his feet...he says it feels like knives are digging in to the soles of his feet by mid afternoon. He rests and goes to bed early...just to be off his feet and reads til he falls asleep.

My sis is stable, no short term memory, but doing well with 70 hours of home health care a week and all her meds, drs stuff, and $$$ looked after for her by me. She is healthy, lord knows how this will play out. For now, she is okay...so sad.

Hoping your various scenarios are "stable" as well...want to hear how everyone is doing.

I am thinking about Connie today...maybe it is her birthday and that is why the world is sending me these thoughts...maybe it's true...the good die too young. And she is only one of many who have passed from this site...so now I am thinking about them all.

Good thoughts to them and all of you as well,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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