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arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 1/4/2010 3:07 PM (GMT -7)   
Thanks Connie, you may be a life saver.... at the Mayo... if Mike's blood vessels are in shape enough will be doing the chemo emolization you talked about and then therasphere... so thanks... but hope those vessels are in shape...
looks like mass is too large for transplant... not good... they should have referred us sooner when it was 2.5...
well, we're hanging in there... long day for Mike still hasn't eaten waiting for ultrasound then if that's ok... going for these treatments... and that'll mess him up good..

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/4/2010 4:25 PM (GMT -7)   

Oh, I really hope that the chemoembolization and TheraSphere will shrink/kill his tumor.  He might undergo resection like I did, several months post TheraSphere.  As I mentioned previously, it takes awhile for it to reach maximum effect.  I wasn't a transplant candidate, either.  I pray that Mike will be approved for these treatments and that they will be effective for him.

There was a questionable spot on my left lobe (all that remains of my liver), but the MRI with Gadolinium I just had shows no cancer.  Thank God!  So 2 1/2 years cancer free now.  They are going to do scans every 3 mos. for awhile.

Believe me, Mayo is "on the case."  They will do everything possible for Mike, and all of their doctors are very highly skilled.

Please keep us posted.  As always, thoughts and prayers are with you both.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/5/2010 8:20 AM (GMT -7)   
He's in for parencentisis.... probably spelled wrong... and ultrasound of the blood vessels to and from liver... then to the Oncologist... YES... YES... YES... and then meet with the Liver Specialist and get the game plan all together today at 3 p.m. so... very soon will know something... those blood vessels have to be working for the Chemoembolization and Therasphere... there is every reason to believe that they are... cuz... CT scanss and others from before show no problems... all of his other organs.. in top shape... lungs, heart, bladder etc... so we're waiting... and they will do a treatment probably tomorrow if he is a candidate for this... so fingers/toes,legs crossed.. and prayers... take care Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/5/2010 10:37 AM (GMT -7)   
I told you Mayo works fast!  Continued prayers that Mike's vessels are okay.  The chemoembolization they can do right away (tomorrow.)  The TheraSphere involves a lot of red tape, plus they will wait awhile to see how much the chemoembolization shrunk the tumor.  I didn't have a lot of side effects from it...mostly slept for about 3 days afterwards and didn't feel like eating.  It wasn't as bad as I thought it would be.   I had NO side effects from the TheraSphere.   Actually, if the chemo embo can shrink the tumor enough, they may be able to just zap it with radiofrequency ablation.
 
Looking forward to hearing more from you soon!
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/9/2010 9:49 PM (GMT -7)   
No Treatment available at Mayo for Mike...    Cirhosis too bad in liver for chemo... no transplant.. too large of tumor... and to top it off.... this week his TIPS Shunt quit working... how long can one last when the shunt goes down??? and Rick where can you get that Voltaren Gel you were talking about... in one of the other posts??
Sandi AB

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/9/2010 10:08 PM (GMT -7)   
At least Mike's choice to be sober is apparently a life long one... he is attending AA as scheduled and doing it willingly and on his own accord... thank God for small blessings... Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2010 1:09 PM (GMT -7)   

Oh, Sandi, I am so, so sorry.  I'm sure their reasoning is that they don't want to make Mike's liver worse than it already is.  ("First, do no harm.")  The chemoembolization and TheraSphere totally killed not only the tumor I had, but also the entire rt. lobe of my liver, which will not regenerate.  I have cirrhosis, but it's not bad.  Viral load right now is 68,000.  They look at whether treatment will lengthen life or shorten it.  In Mike's case, apparently it would shorten his life.  At least you found out quickly, rather than having to drag out the process.

Is the shunt clogged?

I am very happy to hear that he continues to go to meetings and remains sober.  Sobriety will definitely lengthen his life and make his remaining time with you a lot more pleasant than if he were drinking.  So I pray he continues on this path.

Big hugs to both of you,

Connie

 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/10/2010 11:02 PM (GMT -7)   
Shunt is clogged but there appears to be "recanalization" of blood vessels... something has to be working.. cuz he's mentally clear... walking fine... going to the bathroom fine... and actually independent in all things... has restricted his own diet well... I did insist we see the dietician.. and very glad we did that... feel like we're in this huge void... it's unbelievable... hard to describe... but we go forward together... and for today... all is well... so glad found you guys..

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/10/2010 11:16 PM (GMT -7)   

I'm glad to hear that he's doing as well as he is.  How is his mood after finding out neither treatment nor transplant is an option?  Is he talking about it?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/11/2010 4:22 AM (GMT -7)   
We're both in a daze... at first he shut down... now we're acting like nothing happened... guess we're kind of processing the info... or lack of it... I set up an appointment with the local liver specialist to monitor his potassium and fluid levels and watch blood levels... he's on higher diuretics... now...  we did do some minor diet changes... and some things... he is refusing to go out now... we were going out to eat once a week... he really has been very independent... and still is in most things... don't know if he's keeping symptoms from me... don't think so... who knows.. we're just gonna ride it out... together...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/11/2010 1:05 PM (GMT -7)   

Why is he not wanting to go out (aside from the freezing weather?)

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/11/2010 10:46 PM (GMT -7)   
Depression.... seems like he's confused and getting a little testy now... he deleted a relatives number from his cell phone then blamed my daugher... today's silly disagreement was over socks... which he claimed he had none... and found three pair yet in his drawer.... and I'm sure this will only get worse in time... oh, well another day down...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/12/2010 2:56 PM (GMT -7)   

Is he on Lactulose?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/18/2010 11:06 PM (GMT -7)   

Can't believe it's been a week since I posted.... guess for a woman who loves to talk.... I am finally speechless... as is Mike... well, until today... we're starting to come out of shell shock... and talk.... slowly... but I don't know where to begin here... I feel a total lack of resources for those who are not candidates for anything but to wait... this out to the end... and why ... why.. did those doctors just lay this on us without warning... and debriefing or referral for some time of support during this time... I could not find the usual words of encouragement... well, other than ... we"ll get through this together... and I can hear him thinking no... I'm the one alone here.... and so I tell him I'm right here by your side... but no I can not know what it is like to be you.. to be there... just waiting.... th Vitamen D helped cramping..... Mike is starting to lose weight... he had maintained for quite a few months... he's worried about this... so we're strategizing about high calorie/no protein... we did see nutritionist at Mayo... my suggestion... doing everything supposed to do... Mike is very picky eater... I finally had to tell him if he wanted to live... he'd have to eat.....then I was offered a job... that I don't feel I can turn down... but I won't be able to move closer to the job... due to Mike... so have to drive quite a ways... everyday... so getting support system set up.... but I won't be able to provide 24/7 for Mike if he worsens ... but we'll cross that bridge when we get to it... well enough for today... we're just processing all this... overall Mike is independent in everything... and eating... seems mentally clear at the time... so one day at a time I guess... Sandi


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 1/28/2010 1:24 AM (GMT -7)   

   Mike is doing well... he is not retaining fluid... is clear minded... is eating... walking.. and all other normal body functions...  has changed his diet... low sodium... eating small amounts...  guess for now he's maintaining...


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/28/2010 9:57 AM (GMT -7)   

That's really good to hear!  Thanks for posting!  Keep us updated.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/28/2010 11:42 PM (GMT -7)   
Hi Linda,  just wanted to tell you that you are doing a wonderful job.  Your husband is very lucky to have you for his wife. 
 When I first read your post about no treatment at Mayo I had flash backs.   It took me this long to reply to your post.   I have walked in your shoes and know how devestated you are.   Hang in there.  If I made it through it so can you.   It's a tough row to hoe that's for sure.  And remember to take care of you too.   Caregiving is one of the hardest jobs out there.....by far.  
 
Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

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