To Preciousness and Other Posts

[NYgirl]

I have been trying to find contact information for Dr. J for some time now but just CANT get it for some reason (online I just can't find the RIGHT number).

I need a second opinion on whether I should do ANOTHER 30 weeks of treatment and my doctor advised me to go to Dr. J.  Of course he's out on vacation now and I can't get him - when I saw you post down there I knew I had to ask.

Can you tell me what listing I can call in information or something so I can get an appt?

I am on week 36 and running out of time on this decision.

You are tremendously lucky to be going to him.  I want to SO MUCH = and with my odd circumstances my doctor wants him to take over my treatment now.

Thanks so much.

(Sorry guys...I hate to use a thread but NEED to find this man once and for all I tell ya.  The other "expert" looks good but he AINT DR JACOBSEN.

[preciousones]

Sorry for my late reply! I am glad that someone could give you Dr. J's number.  I have his email address too.  He is truly wonderful. He does not take any insurance but it is well worth the visit. Good luck to you all

[silverangel]

I'm sorry...It's hypothyroidim with Hashimoto Thyroiditis. That's when your immune system attacks your thyroid. Caused by Interferon Alfa. Hence...more SX

[NYgirl]

Well I am on synthroid too an so now I'm confused because I am HYPO and you are HYPER...why would they have us both on the same med at about the same dose?

don't understand any of this at all I really dont but I'd think we needed different things to level it all out wouldn't you?

[silverangel]

My TSH is high, but my T3 is low...He said I'm hypo with graves disease.
Silver

[NYgirl]

Oh my GOD I know exactly EXACTLY what you mean!  I feel like saying to the doctor sometimes...well since you thought it over and agreed with my plan - can I take the money I was going to give to you and send it to the person who had the advice and the other person that convinced me to call you and tell you?

Seriously. Don't you feel like - shouldnt they have come up with that knowledge in the first place?

I think this is going to be great for you I really do, darn darn I just know if you had done this way early that all this would be a moot point. I could NOT get over 9 on once a week. Stayed flat right at 9.0 for weeks. As SOON as I tried the 2x in like a week or two it was going UP to the point in only like a month the doc (wow thought for himself here) said you are almost at 16 I think we better drop back again now.

If I kept it going I would be whatever the opposite of drastic anemia is...I'd have so many red blood cells growing I'd sprout freckles and bozo hair!

[NYgirl]

Well my friend you already know what I am going to say. It's only one week and what IF you were to relapse.

But...I don't think you are going to - for some reason I am just sure that you've already got this thing beat so I don't think that the one week matters.

Shocked huh?  didn't expect that from ME did ya?

Did you ask the doc?  I would personally as you know try and do the week but then my hgb is not 8 (but that isn't THAT bad for you)....

Whatever you decide...it's only one week either way.

[welderman]

Thats a tough call sounds pretty low though dut only one more week good luck. I won't be starting treatment untill Sept. so I'm new to all of this.
My stats are
2b
Bx stage 2 grade 2
Viral count 9 million

what Tx have you been on I'm trying to figure out what Tx would be good for me. Dr going to do full blood work again before Tx
I didn't know to ask him at last meeting what drugs he would be using. But he said 3 shots a week and 5 pills a day for 24 weeks. trying to get Info before next appt. Thanks welderman

[can-do-man]

Do what you think is best for you and your health. Whatever you decide i'm behind you. Best of luck to ya

[Mister beagle bailey]

Thanks guys don't really know what to do, I have time.  

Welderman, I am on Peg-intron and riba 800 for what should be 24 weeks.  Good luck with starting tx in Sept,  I'll be here to see your progress.

Beagle

[Algernon]

You have to weigh the incremental little bit of POSSIBLE added advantage of one shot to the tremendous effects of these drugs on your body.  Aren't you a G2?  Lots of new studies suggest a shorter duration works for G2s anyway.  Dump the last shot.  If it worked, it's already worked (and I bet it has).  If it didn't, why hit yourself one more time.  That anemia is bad for you.

I feel worse that I've felt in weeks.  I have ONE more shot on Sunday.  I'm cutting back on my Riba to 3/day this week.  And I'm ditching the last week of Riba.  

If you'll look at one of last week's posts, I asked, "Should I stop?"  I quoted a prominent hepatologist who said that there was no reason to believe that 24 weeks was more effective than 22 (which was where I was at the time).  I'm a 3a.  Even after that, I couldn't bring myself to completely stop.  But, in my gut, I don't think it would matter one way or the other.

[cuteus]

you could do one more shot of interferon and either lower or stop the riba, I did two more wks with inf alone at half dose. No medical reason, peace of mind, since monotherapy does work for some AND it does not affect hgb as much as riba does. Just a thought.
best of luck

[FlGuy]

This is a tough one. For you, 8.0 is kinda high.  Although I know the has been a drag on you and you want to get to FL and stay put for a while, if you can push yourself to go the distance I'd go for it. But, MBB, I have sort of a jaded point of view on this topic. Good luck in whatever you decide.

[anise]

I can hardly believe it has been almost 24 weeks for you.  I remember when you started and I wasn't going to start until a month later then it ended up 2 months later.  Sure wish I started when you did, I would be almost done also.

As for what to do.  Gosh, difficult decision!  With your condition you could stop, but then it is only one more week and if it was me, I would just finish.  And your HGB is up at 8.  that is the highest I remember you having.

I do my 16th shot today, and sure wish I was done.  This vomiting and nausea is just awful.  My stomach does not like these meds.

Good luck in which way you go Mr. BB.  I heard you are going to be around after treatment.  That will be a great help to those coming on board.

[Mister beagle bailey]

Yes I'm a 2B and I've heard the same thing that if it doesn't work by week 22 it's not going to work by 24.
Sorry your having a rough time too.  You and I stated together and are due to end on the same day.  Will you go to the end or are you stopping at 23?

Beagle

[Mister beagle bailey]

Just got a call from dr,will start getting procrit every 5 days.  My next shot will be Mon.
This may help see me through to the end.  It is so close.

Beagle

[Mister beagle bailey]

Deb, sorry for cutting in on this thread.

Beagle

[Algernon]

I'm planning on taking the last shot but not the last week of Riba.

Was it Popeye who used to say to Bluto, "It's all I can stand and I can't stand no more."

[friole]

I am glad the doc has found a way for you to continue.  The Procrit every 5 days has to help. Congrats on your success, whatever you do

[ohgreat]

Glad you got the number for that doc you wanted NYGirl!!hang in there!

Beagle, I havent treated so I have no idea about what you are going through.  I have heard a lot of people that relapse are 3a so I would do all the shots even if it didnt matter.  But your probably in good shape.   Pretty soon, Your going to be feeling a lot better day by day!  And that seems like something to look forward too!  I'm rootin' for you Mister Beagle Bailey!!  :)

[MissMiss]

IF you will have a CBC next week, maybe wait til you know that number before deciding.  I bet you are probly okay to quit but it sure makes me nervous with all you have been through.  Whatever you decide, we are behind you.

miss

[NYgirl]

We are some tough crazies us heppers us - why keep these creepy crawlers inside slinking around in our bodies!  yuck yuck gross cooties! OUT OUT OUT!  :)  I need a "cootie catcher" like we used to make in Elementary school to bonk them out of everybody.

You are going to breeze through tx you know.  It might not always be EASY but because you came on the board and asked questions BEFORE you started you are going to know the right things to do to make life easier...and that makes your tx go better. I mean imagine if you DIDNT know to go to the doc for anemia sides and get Epogen? Something like that? My GOD you could be laid OUT before you got there you know?

But because you are already gainning so much knowledge - you are going to be able to handle it and knock it OUT of the park. You watch and see...I am ALWAYS right!  :)  



Alg said: It's all I can stand and I can't stand no more." and all I remember from Popeye is "I'll glad you pay you Wednesday for a hamburger today"....(my favorite food when I was a kid and even today...can you TELL LOL)

[NYgirl]

AH you made my day!  MADE MY DAY!

Mission accomplished FINALLY :)

I was beginning to give up. Really. Maybe now I'll have some closure on this decision. maybe he'll say no and then I won't even have to LOL.

Thank you SO MUCH everybody for helping me!

[Mister beagle bailey]

BOZO HAIR, LOL LOL

What ever procrit I have left that I don't use I want to donate it to someone who needs it and has no ins.  I don't want the dr keeping it and then charging someone else for it, do you know what I mean?  
It's so true the knowledge we get from this board and because of you I never got the riba rash because I started using the GOLD BOND before starting tx 3 to 4X's a day like you said.

Thank God for this board and the people on it and you.

Beagle

[Mister beagle bailey]

I'm going all the way now that I know I can get the procrit every 5 days.  But if I have a problem the last week of tx, I'll cut the riba after the 24th shot.  Like many have pointed out that the HGB is affected by the riba not the shot.

Ohgreat -- Are you going to treat, if so when? What geno type are you?

Beagle