TheraSphere treatment 4/7!

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hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2006 1:00 AM (GMT -7)   
I feel this warrants a new post!  :-)    I got definite dates today.  Next week I will be busy with a CT scan and blood work on Tues, and an angiogram on Fri.  The following week, I have a meeting with the doc who is licensed to administer the TheraSphere.  He will go over the results of my scans and the blood work.  If those are okay and I can proceed, the TheraSphere will be administered to me on April 7th....3 weeks from now!  I will be hospitalized overnight and then discharged home.  Of course, there will be follow-up scans and blood work.  I was told that the results of the treatment won't really be known for 3 months, as it takes that long to work.  I will be followed in one way or another for 2 years.  The radiologist feels the treatment will definitely be beneficial for me.  He would only do another treatment if the tumor is found to have spread to the left lobe, but he doubts that will be the case.
 
It looks like I will have to continue to wear the leg brace for another 4 months, at least.  After that, if all goes well, I may be able to get the surgery I need on my hip.
 
My sister is planning to come down from SC next weekend for 3 days.

I got out today to do some banking and also got a manicure and pedicure.  I was worn out when I got home, though.  Took a 4-hour nap and now am up late.

Everyone please continue with healing thoughts and prayers.  And thanks so much, again, for all the support!

Connie

 


Barbara P
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Date Joined Feb 2006
Total Posts : 256
   Posted 3/18/2006 9:18 AM (GMT -7)   

Great news, Connie,

You have our endless thoughts and prayers. We will be there for you as you go through the scans and treatment and recovery. Wishing you the best. I'm glad your specialists are so positive; that's the best sign one could ask for at this time.

Hang in there also with your hip.

Big hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 3/18/2006 9:26 AM (GMT -7)   
Hi Connie this is FANTASTIC!!!!!I'm so happy for you sweetie.Looks like things are happening fast eh? And you'll be able to get your hip fixed too! great news Connie. Thankyou for sharing. Enjoy your day out sweetie. Talk to you later. My thoughts & prayers are with you always. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


wheredidigo
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Date Joined Mar 2006
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   Posted 3/18/2006 12:25 PM (GMT -7)   
GREAT new!!! Hope all goes well for you!!!

Trish

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2006 1:53 PM (GMT -7)   
Thanks, everyone! I went back to sleep around 2:30 a.m. and slept until 2 this afternoon. If I am that worn out from this week, I guess I'll be half dead by Sat. of next week. In a way, I wish my sister wouldn't come down, as I know I will mostly want to sleep. She's rather loud, so if she's talking on the phone or watching TV, I'll hear it. I can't close my bedroom door because of my cats. They have full access to the apt. at all times, and are not used to closed doors. I know she wants to feel that she is doing something, though. I've e-mailed her about my need for sleep and that it might not be too much fun for her, so I'll see if she still feels she wants to come.

Which brings up another topic: How do you all make others understand that a visit is not mean a party, or that you or your mate may not feel up to going out at all? I get the feeling that most people just don't "get it," as far as how liver disease wears you down and fatigues you. Caretakers are also tired.

God bless you all.

Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/18/2006 2:14 PM (GMT -7)   

Hi Connie,

We have been fortunate in that most of our friends who are planning trips to Northern California always preface things with, "Only if Gene is up to it" and "We will only come for a short visit". I'm refering to wonderful friends I've met on the Internet who have been through all Gene's ups and downs and my ups and downs along with him.

And people from our area who come by are used to Gene being asleep or excusing himself when he gets tired. Liver fatigue is something beyond most of our realities until it is experienced first hand or through our loved ones.

Is it possible for your sister to stay at a nearby motel and only get together with you for short periods when you are up to it. I know she wants what is best for you and it's probably important that she see you.

Keep us posted.

Barb

 


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 3/18/2006 3:47 PM (GMT -7)   
Hi Connie, most of the time I don't have to worry about what to tell people anymore. Because I'd flat out tell them I have to go rest now or have to go home now they found me to be too much of a drag & just stopped comming around or calling period. they don't want to hear explainations & some feel either your still active & fun or tired & boring.your right they just don't get it or just don't want to get.Also for me the encephalopathy ddoesn't help matters any.Barb's suggestion for your sister sounds like a really great idea if its possible. My thoughts & prayers are with you. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2006 10:33 PM (GMT -7)   
Well, she wrote back and said that she is up for anything, so she is definitely coming. I don't feel that I can ask her to take a motel room, when being with me is what she wants. When she came down on New Year's Day, she brought her son and they originally were going to stay at a motel, but they then decided to not stay overnight. This time, I believe she is coming alone. I guess I will just play it by ear and she how it goes. We are both in a financial position where she could stay at a motel, but I will just see how things are working out once she gets here.

I thought I was totally over the bronchitis, but today I had congestion and coughing. This was my last day on Levaquin. I will probably call my oncologist on Mon. to see about another round of Levaquin. He will likely want me to have a chest x-ray, but that could be done on Tues. when I go for the CT scan. I had such a long bout of coughing today, I thought it would never stop. I finally made a cup of green tea with honey and lemon and that stopped it. I also took a Benadryl, which helps. It could just be allergy as everything here is in bloom. For those of you in colder climes...spring is definitely heading your way.

Connie

Post Edited (hep93) : 3/18/2006 10:38:25 PM (GMT-7)


lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 3/18/2006 11:59 PM (GMT -7)   
Hi connie,maybe its good she's comming to spend time with you. If you find your not getting enough rest then maybe then you can ask her or very gently suggest it. who knows maybe she'll keep your hours.i'm sorry to hear your congested again I hope its not the bronchitis again.It's a good thing you don't have advanced cirrhosis or you would not be able to have your green tea.I'm in colder climate & I pray your right that spring is headed our way. They say spring is just around the corner but what I want to know is which corner.lol. My thoughts & prayers are with you Connie.Love & hugs. later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/20/2006 4:55 PM (GMT -7)   

Hi Connie,

Just wanted to let you know, I am so happy things are getting started. I think your sister coming to give you support is just wonderful. She might just keep you going through all the test!!! My Prayers are with you!!!

Valerie isn't this such wonderful news!!!

Hugs,

Teresa yeah


donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 3/20/2006 5:05 PM (GMT -7)   
Hello Connie, yeah
I am also Happy for you! I am happy your sis. is coming to give you support. You deserve all the support you can get!
 
Connie hang there and know that we all care and love you! Call on us any time.
 
My prayers are always with you.
 
Hugs with Love coming your way!
 
donajean

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/20/2006 6:16 PM (GMT -7)   
Yes Teresa this certainly is good news.I agree about the support you need that right now Connie.I'm sure she'll understand the sleep thing.We all care 7 love you Connie. hang in there sweetie.we are all here for you. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/20/2006 8:41 PM (GMT -7)   

Hi Connie,

I hope your coughing has cleared up again and was just an allergy or something minor.

It sounds like your sister will do whatever is best for you. I know you will appreciate her support.

We found out last evening that both of Gene's brother's will probably be visiting for ten days in May at the same time. I'm concerned that it will be too much for Gene with two guests but he isn't complaining so I won't interfer.

His oldest brother is known lovingly as Norb the fixer and Norb the talker. He is a health nut and always is pushing far out treatments on us and he talks nonstop and in your face. Then last time he was here he tried to help by repairing a leaking faucet and some boards on our front deck. He messed things up so badly that we had to call the plumber to replace his attempts and hired a handyman to correct his sloppy work on our deck.

Wish me luck; I'm the one who will stress out over it.

Hugs to everyone,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/20/2006 9:30 PM (GMT -7)   
Oh, goodness, Barb! My little visit from my sister is nothing like 10 days with 2 of Gene's brothers. LOL! Hope you survive Norb! :0

Thankfully, I've had no congestion today. Our weather is so darned crazy now! It's going to be 85 tomorrow, but dip down into the 30s the end of the week.

I'm off to Mayo tomorrow for blood work and an abdominal CT scan. I'm taking the van and pray it comes on time and doesn't break down. I will be met at the front door by a doorman who will get me a wheelchair and a volunteer to push me around. They treat patients wonderfully there.

Is anyone watching that new show, Miracle Workers? I was especially interested in the hip replacement tonight in an older dancer. I also was a dancer when in my 20s. This man had a minimally invasive procedure on both hips at the same time. Mayo Ortho does this, but not on a revision. Also, I have avascular necrosis, not arthritis, so the destruction of my bones was much more advanced. While this man on TV just had the femoral heads replaced, I had femoral heads and nearly half of my femurs replaced, with a metal lining placed into the socket. I only had one hip done at a time--both would have been too much. I've never had problems with the right hip.

I'll check in tomorrow night.

Connie

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/20/2006 10:35 PM (GMT -7)   
Hi Barb, that sounded like fun. And expensive but as long as Gene enjoyed the visit. His family & friends do need to spend time with him & support him now.Oh no! 10 days???? Good luck sweetie.

Hi Connie, i'm really glad to hear no congestion Today. That's good news & one less obstacle.I've never seen that show. I'm glad the surgery worked for the one hip at least. Hopefully after treatment they'll fix the other one too. I'm glad they give you good treatment & service there. I will be praying for you tommorrow sweetie. keep us updated what's happening. we are all here for you!
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/21/2006 7:25 AM (GMT -7)   

Hi Connie,

Good luck with your appointment today and my fingers are crossed that transportation gets you there on time and comfortably.

I saw the listing for Miracle Workers but didn't get a chance to watch it.

I have another concern about Gene's brothers visiting. Dan has had Shingles for almost six months and still has scabs he scratches. I know you cannot catch shingles but can get chickenpox if one never had it. Gene does not recall whether he had chickenpox or not. We all know how serious Chickenpox is in adults; Gene is very sensitive and it could do him in. I don't know if I can trust his doctors to give us adequate advice. Does anyone out there have any ideas?

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/21/2006 11:08 PM (GMT -7)   
Hi Barb, we all know how any viruses can be for liver patients & that has very serious cosequences on us & sometimes fatal because we can longer fight anything off very effectively anymore.these kind of things are far more serious to us than others realize. Shingles in some cases are contagous.But i don't know about if they are dry & of course no longer a threat if they are healed.Yes chicken pox is more serious in adults & for liver patients its that much worse for us. If it was me I would ask the brother to wait till he is clear of all virus. It's not worth the risk i don't think. Not a risk I would take anyway knowing what can happen. Let me know what you decide sweetie. My thoughts & prayers are with you & Gene. later....

PS. How are you Connie? I'm worried about you. My thoughts & prayers are with you. hope to hear from you soon. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/22/2006 1:05 PM (GMT -7)   
Hi, everyone! I was too darned exhausted to post last night. I ran into a problem when it came time for the CT scan. They had to wait for the lab results, specifically the creatinine. I knew it would be fine, but they couldn't even give me the oral contrast until they got the labs. It took 3 hours of waiting. Then they had to get an IV started to infuse iodine-based contrast--no easy matter with my veins--while I drank the oral stuff. I called the van service to let them know I would not be done by 4:15 and to send someone between 5 and 5:30. They said to call when I was done. When I finished and got to the main entrance, one of the doormen told me the van had been there at 4:15 and left. I should have checked in at the front door and let them know where I would be (CT on 2nd floor.) However, the operator should have canceled that ride and booked another for after 5. Instead, the operator told me to call back in 20 min. I didn't even wait that long, but called back at 5 and said I needed them to get a ride out to me, as they close the building at 6. They sent a cab at 5:40 p.m. There was already a passenger in it who had to be dropped off at the beach before taking me home. I didn't get home until 6:30. Need I tell you how tired and hungry I was by then? I hadn't had anything to eat since that morning.

Once home, when I was taking off the dressing from the IV, I found I had blistered again. Thank goodness, this time it was only a nickel-sized blister this time.

I slept until 1 p.m., just before my helper came to shop. She will be back tomorrow morning to do some cleaning before my sister gets here. She also forgot a few things on my list, but I can have my sister pick those up.

The congestion must have been allergy as it went away. They scanned my chest yesterday, as well as abdomen. I will get the results next Tues.

So...3 appts. down and 3 to go.

Thank you all so much for caring!

Connie

lerie
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Date Joined Nov 2005
Total Posts : 966
   Posted 3/22/2006 1:18 PM (GMT -7)   
Hi Connie, what a long day! You must've been exhausted.Even tho your ride got all screwed up I'm glad they made new arrangements for you. If we miss our rides here we are out of luck regardless of the cause. I'm relieved it worked out for you. What caused the blister Connie, allergy? Well 3 down 3 to go ,your half way there sweetie! hang in there.I'm glad to hear also the congestion is finnally gone.What is it with viens & liver disease? we all seem to have that problem.I'm glad you got these tests out of the way now. get some extra rest today if you can.Glad you have your home care there to help you. mine is heaven sent to. I don't know what I would do without her. Let bus know what the results are when you get them Connie. Love & hugs. My thoughts & prayers are with you. later...
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/22/2006 3:08 PM (GMT -7)   
"What caused the blister Connie, allergy?"

Lerie, I'm not sure. When I had Gadallinium for an MRI at Shands, the vein "blew," so it went in under the skin and burned me very badly--huge blisters up my forearm, plus the hand and arm swelled up to 3 x its normal size. Yesterday, I felt burning in the beginning and that must be when it blistered. It could be that they were initially infusing too quickly. I have to let the doctor and techs know on Fri. I don't know what contrast they use for an angiogram. I am still tired from yesterday.

Connie

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/22/2006 3:40 PM (GMT -7)   
Hi connie, i am truly sorry you keep having to go thru that problem with the dye . If they give you an explaination for it i'd be interested in knowing what they say about it. Gosh that would be so uncomfortable with all that swelling.like you said maybe they infused it to fast 7 with your viens as they are couldn't handle it.I can immagine you must be still tired. these tests seem to always be so tiring for us don't they. But we do need them so hang in there sweetie. Hope you get a good rest. talk to you later. My thoughts & prayers are with you. Love & Hugs. later....

"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/23/2006 12:14 PM (GMT -7)   

Hi Connie,

I feel for you, the testing and the transportation can be very exhausting!! Hope your sisters visit is going well! My Prayers and love are with you!!

Hugs!!

Teresa


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/26/2006 1:20 PM (GMT -7)   
Just an update on my pre-treatment tests. My sister came down from SC on Thurs. afternoon. We only got about 3 hours' sleep and had to get up at 5:30, to get to the hospital at 6. I had the angiogram at 8. Some of the veins that were going from the liver to other organs were stopped with coils. I remember the radiologist saying something about a potential problem with one vein going to the diaphram, but I believe he also said he thought it would be okay. They were infusing some Versed and pain med. I remember I kept being awakened and told to take a deep breath and hold it. When I was told to breathe, I would slip into sleep again. The incisions in the groin for the angiogram didn't hurt. However, a needle into a deep vein in my upper arm to establish an IV site hurt like he--.

Having my sister here for 3 days and nights went fine. She checked out a nearby flea market and some thrift stores, and went to Radio Shack to get a phone battery and wireless router for me. She gave me a DVD player for my b.d. (63 yesterday), and set that up for me. We watched movies on Fri. and Sat. nights.

I hope to speak to the nurse or someone tomorrow regarding all the tests. If they are okay, I will keep my appt. on Tues. to see the oncology radiologist who will do the actual infusion of TheraSphere on April 7th. So I'm almost there! Continued thoughts and prayers are welcomed, though. ;)

Bless all of you for the wonderful support.

Connie

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/3/2006 7:34 PM (GMT -7)   
Jennifer, I was disqualified for the TheraSphere (I started a new thread on that), but will do chemoembolization on April 7th instead. My sister is coming once again to take me to treatment and be with me for a couple of days afterwards. I will be admitted overnight after the treatment, though, and discharged on Sat. if no complications.

I've been having constant liver pain for days, that I didn't previously have. Mayo Oncology sent me a written Rx for a stronger pain med, which arrived today and I had it filled by my helper. It has made a big difference, but I will only take it when the pain is really bad.

Connie

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 4/3/2006 8:58 PM (GMT -7)   
Hi Connie, I'm sorry to hear that you are in constant pain. I hope you get some relief.Glad to hear you only use the meds when you really have too. Please take good care of yourself.I am here for you. My thoughts & prayers are with you always. later....
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there.
 
Valerie

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