Finally!! Treatment!

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hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2006 2:32 PM (GMT -7)   
I just got the call I've been waiting for these past 2 mos. or so!  TheraSphere is starting at Mayo next week!  I was the first one called!  There is a protocol:  First, a sit-down meeting with 2 doctors, blood work, angiogram with tracer radioactive pellet, and finally the TheraSphere procedure itself...which will be done in one or two treatments, at least 4 weeks apart.  I will be called on Mon. with the date of the first (consult) appt. for next week!  I'm on my way!
 
Everyone please pray that nothing will hold this up now, and that I still qualify.  This is my 2nd day on Levaquin and the first day I have not woke up coughing during the early morning hours and do not feel congested.  By next week, I should be completely rid of this "bug."
 
Couldn't wait to share this great news with all of you!  :-)
Connie

Post Edited (hep93) : 3/10/2006 2:35:34 PM (GMT-7)


Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/10/2006 3:36 PM (GMT -7)   

Hi Connie,

Fabulous news! I know you've been waiting for this call. You have my prayers that the antibiotic does it's thing and that you will not have to delay starting treatment.

Keep us up to date.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


donajean
Regular Member


Date Joined Jan 2006
Total Posts : 141
   Posted 3/10/2006 4:01 PM (GMT -7)   
He Connie!!
 
Great news! Thank the Good Lord! Glad your on your way......
 
My
Thoughts and Prayers are still with you. Hugs to You....
 
Love,
Donajean

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/10/2006 5:52 PM (GMT -7)   
Hi connie, you my dear have just made my day with your news!!! I'm so happy for you! I've been praying for you since the day we have met here & allways will sweetie.i'm glad your cold is doing better too. how's the hip? All the very best of EVERYTHING to you hon. Take care & god bless. keep us updated. 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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2006 5:56 PM (GMT -7)   
Thanks, y'all! I don't expect a cure from this. What we are hoping is that the tumor will shrink enough for it to become operable (best outcome) or at least for it to buy me some time and perhaps make be more comfortable if it shrinks some. Whatever happens, someone else will benefit from this study down the road. I've been wondering for a while now what I could do to "make a difference," aside from small donations to charity, and this seems to be my "raison d'etre."

Bless you all.

C.

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/10/2006 7:12 PM (GMT -7)   
Hi Connie I know you don't expect a cure but prolonging life & being more comfortable is a lot right there at this point.I'm so very happy for you,tho it would be excellant if they could operate. Did you know you make a differance in my life every time you come here? You make a lot of difference for people here Connie in ways you maybe don't even realize. This experimental treatment is just one more way of making a difference. 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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/10/2006 9:21 PM (GMT -7)   

Bless you, Lerie.  Hope you have a better day tomorrow.

C.


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/11/2006 12:51 AM (GMT -7)   
Hi Connie,
That is Wonderful News!!!!  You must have a heart as big as Texas, to be thinking of your "raison d'etre". It will definitely help others. I have read up on the therasphere and the study's so far are promising. I do pray that it shrinks the tumor to an operable size. I know you are in for an exhausting week, but you can do it! I will continue to keep you at the top of my prayer list, I will pray that you qualify and pray for your healing power!!! Just want you to know you are a special lady and I do care. You have just made my night great!! Bless You!!
 
HUGS
 
Teresa

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/11/2006 8:32 PM (GMT -7)   
Thank you, Teresa! :)

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 3/12/2006 10:20 PM (GMT -7)   
Just read your great news. I'm very pleased for you. I hope everything goes well with the treatment.
Marg

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/13/2006 4:32 PM (GMT -7)   
Thanks, Marg! I just got another call and my first appt. will be on Wed. for the discussion of what's being done and when, and probably some blood work. Angiogram will be next week, but I will get the date for that when I am there on Wed. I'm thinking that the TheraSphere treatment may be next week also, or very soon after that. Glad things are moving along quickly! Now I have to try to get a haircut tomorrow!! I colored my hair on Sun. I had not let my hair grow out to its natural color in over 20 years. There's about 40% gray mixed with 60% mousy brown. I'm not the mousy type, so I went back to being a redhead! :0

Connie

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/13/2006 4:43 PM (GMT -7)   

Hi Connie,

Things just keep on moving along, that is great to hear! I know what you you mean about the hair mine needs a cut pretty bad too! I haven't started coloring yet, could if the gray starts coming in.  Let me know how the consultation goes> My prayers are with you!!

Hugs and Love,

Teresa


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/13/2006 8:15 PM (GMT -7)   
Hi Connie, it is so good to hear things are finnaly moving along so quickly for you. No I can't imagine you being mousy either. Red eh? Sounds fiesty like you! I've been coloring my hair every sense I went into liver failure as I seemed to go gray very quickly after entering end stage. I color mine chestnut brown. My natural haircolor. Keep us up to date Connie. My Thoughts & prayers are with you all. 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


PN16
Regular Member


Date Joined Oct 2005
Total Posts : 98
   Posted 3/14/2006 12:27 AM (GMT -7)   
Connie -

What a great post to read - I hope you are feeling well. Good thoughts comming your way...

Patty

TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/14/2006 9:52 AM (GMT -7)   

Connie,

Good Luck tomorrow!! My Prayers are with you!!!

Love and Prayers

Teresa

P.S. Please feel free to e-mail :)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/14/2006 10:39 PM (GMT -7)   
Thanks for the responses, everyone! Your support means a lot to me. I feel a lot better since the Levaquin knocked out the bronchitis. I'm still fatigued from the hep and cancer, but have more energy now that I've kicked the acute illness. I did get my hair cut today. I did my nails tonight, but need a pedicare. I have to have that done at a salon, as I can't bend that far or bring my foot up that close, due to the hip replacements. I'm starting to look like myself again, though!

I'm taking the handicapped van to and from St. Luke's tomorrow, and they will come for me at least 45 min. before my appt....and I told them it was for 1:30 instead of 2. The last thing I want to do is be late for this meeting. If I'm not too worn out tomorrow night, I'll come post about what's discussed and my angiogram date.

Bless you all,
Connie

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/14/2006 10:51 PM (GMT -7)   
Hi Connie, your support has meant a lot to us too!I'm glad you finally got rid of that nasty virus. Hows the hip doing?No you certainly don't want to be late for your appt. I'm glad you got out to get your hair done. My thoughts & prayers will be with you tommorrow as always Connie.Please let us know how it went as soon as you are able to sweetie. I for one will be anxious to know. good Luck & take care. 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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2006 4:47 AM (GMT -7)   
I wrote a really long post last night about what transpired at the meeting yesterday, but lost it somewhere in cyberspace before I hit Send (hit the wrong key.) I will try to give a condensed version, since I'm not able to sleep...just keyed up and overtired, I guess.

I had the meeting with the radiologist and nurse I've been in touch with who is coordinating everything. The other doc--a hepatology radiologist who has the license to actually administer TheraSphere--was not able to make the meeting. However, I will meet with him prior to treatment.

First of all, I haven't had a scan since early Dec., so I have to get a new CT scan with contrast. That is being scheduled for sometime next week. I will get blood work the same day. Following that, the radiologist will do an angiogram. However, he is going out of town to a seminar for a week, so we don't know if we can get this done before he goes. After the angiogram, if my vessels seem okay and they are feeling sure there is no danger of the drug going to my lungs or another organ, I will meet with the other doctor. They will then order the TheraSphere, which is custom made for each individual and takes 8-10 days after they order it to reach them. Finally, I will get the treatment. The radiologist is going out of town for a second time for about 10 days. In addition, they have to get someone else to have their treatment at the same time I have mine, for purposes of comparison, logistics, etc. I have to have Bill with me when I go for the angiogram, and also to take me to the hospital for treatment. So everyone has to be free at the same time. The actual treatment could be as late as right after Easter.

I'm expecting a call this morning from the nurse, with an appt. for the CT scan and blood work next week. Since I can take the van for that, I can go any day.

Speaking of the handicapped van, I waited an hour for it to pick me up to go home, and then...just as we were going to turn into my street...it stalled out. Dead. We were on a main thoroughfare at the beginning of rush hour. A cop came along and gave us a push into my street and then into a convenience store on the corner. There we waited for an hour for someone to come out with jumper cables to get us started. That was so frustrating. I could not possibly walk to my apt. at the very end of the street. That is why I take the handicapped van. It is my means of transportation when I need to go somewhere. So I had left here at 1 p.m. and didn't get home until 6 p.m., just for a meeting 15 or 20 min. away. I was so tired, I think I was overtired, plus I had all the above swirling in my head, and just have not been able to sleep.

However, the nurse will be calling me later this morning, and then my helper will be here to clean, so I'd better try to catch a couple hours of sleep!

Thanks for all the interest and support!

Connie

Barbara P
Regular Member


Date Joined Feb 2006
Total Posts : 256
   Posted 3/16/2006 7:06 AM (GMT -7)   

Hi Connie,

One thing you are developing is patience. I'm sorry the start of your treatment is being drawn out but that seems to be typical when we need to coordinate medical treatment. The radiolagist sure is away alot. I know you are eager to get things going.

Paratransit is the handicapped bus or cab system here and it can be a pain in the butt also. We take it when Gene is unable to drive or we are going someplace farther away. But it always takes forever. When they don't forget to pick you up, they have to make other stops first or they are running far behind. We always allow ample time in case the appointment takes longer or is late in starting and Gene is wiped out by the time we get home.

Keep us up to date.

Hugs,

Barb


                     LIVE IN THE MOMENT!
 
                          Hugs and Prayers
                                     Barb
 
 
 
 


TDT
Regular Member


Date Joined Jan 2006
Total Posts : 402
   Posted 3/16/2006 7:33 AM (GMT -7)   
 Hello Connie,
 
I sure do know that keyed up feeling, makes it very hard to sleep!!! Last week on the first trip to Little Rock, It had been raining and I left the lights on to the truck. Needless to say we had to find someone kind enough to give us a boost, took about an hour. Very frustrating!!!! They have so much to prepare for with this being their first time treating with theTherasphere.  Time consuming... But it is good that the ball is rolling on it!!!! I hope your Ct scan goes smoothly. I have you at the top of my Prayer list!!!
 
Love and Hugs,
 
Teresa

lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 9:49 PM (GMT -7)   
My goodness Connie, that's a lot of waiting & time again.Well at least the ball is rolling & perhaps it will go smoothly & quicker than you think. Who knows. I had hoped it would be much faster. That's a lot of co-ordinating to do to. I will be praying for you hon.Sonds like your handicap Vans there are like ours here. Not a real good system but better than the one we.d have without it I suppose.that was certainly a long day for you tho. Hope you get some good rest. 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


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2006 10:35 PM (GMT -7)   
Thanks for the support, everyone. Well, I didn't get a call today, so I can only assume that the nurse was too busy or wasn't able to get a date set for the angiogram. I'm sure I'll hear from her soon. I called at 6:30 p.m. and left a message to call me in the morning. I'm hoping I can get out in the afternoon and get a pedicure.

They do have to be very sure that everything is safe as possible before giving the TheraSphere, since this is the first time and they are under the eye of the Federal govt. (FDA?) Everything has to be done in a certain sequence and they cannot skip anything. I wouldn't want the job of coordinating, that's for sure. The first trip the radiologist is going on is a conference about TheraSphere with other docs from all over, with reports of the results they've gotten, problems, etc. So that's good. I don't know what his second trip is about. This is a specialist in interventional radiology (radiation) and not just someone who reads x-rays. I feel I am in very good hands with the Mayo/St. Luke's doctors.
 
Barbara, I feel like I gained patience when I was in a spica (body) cast for 3 weeks, flat on my back, and then in a hip/leg brace for 5 weeks that was locked in a frog leg position on one side.  That was a total of 2 months of immobility.  When I was in the spica, I was totally dependent on the nurses for everything, except eating and upper body hygiene.  That was following the revision surgery on my left hip.
 
BTW, a vial of TheraSphere costs $16,000 for one patient! 

I'll keep everyone posted as things progress.  Healing thoughts and prayers go out to all.

Connie

Post Edited (hep93) : 3/16/2006 10:40:53 PM (GMT-7)


lerie
Veteran Member


Date Joined Nov 2005
Total Posts : 966
   Posted 3/16/2006 10:49 PM (GMT -7)   
Hi Connie, I'm glad they are very competant & cautious. I just worry about you & the time all this is taking.I'm also glad you feel comfortable with them.Your right their job is not an easy one to co-ordinate all this & I wouldn't want the job either.WOW that's a lot of money for treatment per patient! I hope you can get out for your pedicure. A nice relaxing day out even for a short time can make a big difference. Take Care Connie & please do keep us updated. My thoughts & prayers are with 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


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 3/16/2006 10:50 PM (GMT -7)   
hello! Good luck Connie! Im new here so Ill quickly introduce myself. Hubby has hep b and probably has had it for a while. Hes in stage 3 cirrosis. Hes 3 mths in on interferon injections. I contracted hep b from him and mine too is chronic,though I am not on any treatments yet. I decided to look for an outlet on here to vent as it is getting harder and harder to deal with this alone. There are NO support groups in our area so here I am!!! Hes waking up so Ill write more later.

Trish

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2006 11:01 PM (GMT -7)   
Welcome, Trisha! Thanks so much for the support. You are certainly welcome to vent here! This is a wonderful site for support. I'd be pretty ticked off if I were you, by the fact that you contracted hep B from your hubby. Did he ever suspect that something was wrong prior to being diagnosed? Did he have jaundice or extreme fatigue? How about liver function tests? If he didn't know he had it, I suppose you just have to accept and forgive--which you would have to do, anyway, for your own sanity. Still--it's okay to feel anger. When do you expect to get treatment for yourself? You do not want it to go untreated for long!

Trisha, I hope you introduced yourself in another thread to everyone else, and that you come back often.

Hugs,
Connie
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