HGB dropping w/ no labs this week

[52TELE]

Hello all of you beautiful HCV afflicted and otherwise  inconvienced people. You have all been nothing short of a blessing to me since the day I was diagnosed.
I started my tx 3/24/06 (150mcg peg-intron/wkly - 1400mg Ribasphere/daily)and have completed shot #4 of 48 .

The day my tx started , my baseline HGB was 16, One week later it was 13.4 and one week later it was 12.For some reason , I dont have any labs scheduled for this week but start up again next week.

My question: I feel like I could melt into the floor. I find myself almost stagering through the house bumbing into every thing even close to being in my way. My muscles are so oxygen starved I had to switch hands when I was brushing my teeth this morning because of the muscle  ache. I am afraid that my HGB levels have continued to fall at the rate they have been and no one is going to know about it until next week. Am I in danger of dropping too low and what happens if I do? The PA at my HEP Dr has  contacted my insurance company to get approval on using Procrit but she hasn't returned my calls or emails this week and I'm pretty nervous about it.

[jerialice]

what are AD's??

[cajunlady]

You are still one of the funniest.  You, dale ray, gooydad put me in tears of laughter many times.  Can always count on that laughter to lift my spirits.  Don't ever change that personality; its great.

Oh!  I'm sure, I've been in a few cages in my crazy days.  Just can't remember; you know, OH! those 70's.  LOL

How are you doing these days and what shot are you on now.

cajun

[dyce]

Thanks there girl fer askin, right now I'm so tired I can hardly function but the hmg is still holdin at 11.3. Too much work and not enough sleep. Sleep good 1 nite and the next, maybe 3 or 4 hours, really sucks but I'm holdin up.

[cajunlady]

Yeah! I can relate to the property tax.  Mine doubled since I moved from LA County to Ventura County.  I pay a little over $5,000 a year.  Thank God they break it into two payments a year.  But, I would not change it for the world.  Was up in your area over Easter weekend.  Finally went out and socialized a bit.  It felt so great to be somewhat normal again.

How are you doing now.  Hope this finds you with lifted spirits.

cajun

[cajunlady]

Yeah, I guess I could be the gal in that song.  I am doing great since the AD's.  How are you doing; hope you are with few sides.

cajun

[cajunlady]

Where are you in tx. What week?  I know the tired feeling.  At the begining of tx my hgb was 14.4 to 11.9 - 11.3-10.8-9.8-10.0-9.8-9.9 last one was done on last week.  I had problems with low platletts for awhile and then they decided to go up on their own.  I get very tired on some days, no energy, whether I sleep or not.  
Are you on any AD's.  I gave into them and my life is a total difference.  I do not want to go the sleeping pills too.  So, I asked my doctor if I could take an over the counter sleep aid.  He said yes.  I do not need them as often anymore, since I take the AD's.  But, if I need one, it's there.  I just take the rite aid brand.  Works fine; and I don't always take the doseage of 2; sometimes just one.  So, check with your doctor to see if you can take these.  They are nice when you need them.  I promise, your sanity will return some.

GOOD LUCK!  Let me know what takes place.

cajun

[can-do-man]

Glad to see you post. Hope your feeling better. Soon you will have those svr papers in your hands. Take care gal im waiting on ya.

[Mister beagle bailey]

The test you speak of is what I will go with.  Just found out from my dr. that is the test he  will do from this point on, as I only have 8 weeks left.  he uses those test near the end and post tx.

Thanks,

Beagle

[Mister beagle bailey]

Thanks for the number.  How do you feel about the best post PCR test?  What test are you going to do?

Beagle

[FlGuy]

Glad to hear you're weaning yourself off the various meds.  In addition to the dietary items, are you taking things like milk thistle, ACV and I think you were a Centrum Silver guy?  I'm using all three but have no idea of any impact they are haveing positive or negative.

[jmjm530]

Thanks for the heads up. I'm taking something called "Optimum Enzymes" by Bluebonnet. It says to take 1 capsule at the beginning of each meal, but so far just been taking 1 capsule with breakfast.

Also, stopped taking Nexium (and all the rest of my meds!)4 days ago plus a number of dietary measures as mentioned earlier which hopefully will compensate for the Nexium withdrawal. But being realistic, I  probably won't know for at least another week or two what's what, and if I can stay off GERD meds like Nexium or have to go back on something.

The trick with LPR is to heal the injured/inflamed tissues high up that can cause/trigger throat, ear and sinus problems. My theory (and hope) is that I was unable to do so on treatment because of a suppressed immune system, but now have a better shot as my immune system strengthens post treatment. Anyway, at this point, nothing to lose!  Hope this finds you well.

-- Jim

[cajunlady]

Hi there,

Things are going better.  I will be the first to admit that, it is all due to the AD's and Ativan; that I was so stubborn about starting.  Being stubborn can do more harm than good sometimes.  I am just in love with the new meds.  Thanks for asking.  
And, how are you doing.  Hope good.  You know we all deserve some good in this treatment.  I think we all have to admit sometimes tx is just NASTY; and just about when you think you can't go on, you get two great weeks and that is what tells you this is doooooooable.

Have a great evening.

cajun

[dyce]

Ha cajun, how ya doin? Ha I thought you were the gal hank jr. sang about.

Dyce

[MissMiss]

Just wanted to add something about insurance and support drugs.  While I was waiting to convince GI to add Procrit, I had my GP's nurse (what a sweetheart) find out what she could from my insurance.  Group Health.

The guideline they recommend is to begin support drugs rather than reduce treatment meds.  I have a paper in my file from ins and showed it to the doc.  He wasn't too impressed, all after he had reduced the drugs for four weeks while I am trying to tell him I needed the Procrit.  He waited til the day he sent me to the ER for the Neulasta shot to refer me to cancer doc saying that he doesn't prescribe Procrit.  Another five weeks later I finally got the procrit.  It took another four to six weeks to really kick in.

So, know what you need to know NOW.  Like, look in your ins. drug formulary, does it need pre-approval and how long will that take, do they recommend dose reduction before Procrit, who will actually prescribe it, if someone else-how long to see them.

Others will have more advice on what to find out now.

missmiss

[Mister beagle bailey]

I wrote the camp grounds down in my book, so I can check them out.  I will be there from Oct.26th ant the first week od Nov.

My son wants us to move to Ca. but it's so expensive to live there.  If I could find something reasonable I would do it in a heart beat.  Will let you know when I'm there and maybe we can get together.

Glad to hear your feeling some what normal and I hope it keeps up.  

Beagle

[can-do-man]

So how we doing cajun? I used to read your name and thought it was cajinlady. Always wondered why you lived in a cage. Sheesh glad i got that cleared up.

[cajunlady]

You know, there is a reason people like Southern California. It is just absolutely gorgious most of the year.  My guess we have nice weather 3/4 of the year if not more.  What type of work do you do.  Always, something out here that you can make a good living.  Another way to contact me is ***@****
I think Nygirl asked for this too, so if you would pass that on to her, I would appreciate it.  

You know the campgrounds are still open at that time of year too.  Have you ever been out here.  If not, well, you may not want to go back to any other weather. LOL

Oh and tell your wife and family hi from me next time you talk. And yes, feeling a little normal has been wonderful.  Wish we all had more good day in tx.

cajun

[Mister beagle bailey]

Will pass it on to NYGIRL.  Yes, I've been out there 2x in the pass 2 years and I love it.  Will tell my wife you said hi.  How is the cost of living out there?  I'm concerned about the housing cost.  I'm retired from my job but my wife is thinking about going back to work.  What's the best paying jobs to get into?

Beagle

[Mister beagle bailey]

My wife was in management when she worked, but hasn't worked since we moved to Fl.  Our son lives in Aliso Viejo,Orange county.  What areas are good with property tax and housing cost?
We were boen and lived in NY till 4 years ago and as you know NY is high also in taxes and housing, the key is finding the right area.

Beagle

[Mister beagle bailey]

I forgot to tell you, I sent NYgirl your e-mail but she hasn't answered me yet.

Beagle

[cajunlady]

The cost of living here is different; but you have to remember the pay scale is higher here.  What type of work does your wife do.  I will check with my husband for you and get the top type positions regarding money.  We do pay more on gasoline here than elsewhere, enviromental laws make more process for the fuel; in turn cost is higher.  I think the hardest thing for me was to CHOKE down the Property Tax.  That can get steep in some areas.  Different areas have different rates like for your car insurance, house insurance and it makes a big difference.  If you pick the right area, you can survive; in beauty and comfort.  But, do remember, nothing is ever easy in life.  Work hard enough and you can acheive.

cajun

[Forseegood]

hi cajun, just wanted to pop in to say hi, seems like youre doing better, and that's great...stay well...

[friole]

How far from Midland?  Greetings from West Texas

On Procrit.  I think many insurance companies use hgb of 9 as a guideline for the procrit, but not all.   I started Procrit when my hgb was in the 10's and so have many others here.  Sometimes the doctors say what they THINK the insurance companies will say - I know my GI does that - but a call into the insurance company may help.  I have my own personal case manager at BC/BS and he is a gem.  He volunteered to take my case becasue he has gone thru treatment.

[cajunlady]

52TELE:

I think all above have given you good advice.  Do watch those blood drops.  As, others have said; if things get real bad go to the ER Room, don't wait til you faint.  Really hope things get better for you.

Welcome to the Forum, sorry you have hep c. Congradulations on starting tx.  I am 51 yr old Female, geno 1b, shot 16/48 and was Undetectable at 12 pcr.  Good Luck and do stick around; lots of info and great people here to help you through this time in your life.  We understand; because we are in the same boat. Good Luck!


MR.BB:  I love to camp, this year has been limited so far.  Just did not know what tx would bring.  I went to Carpenteria Beach; which is at the begining of Santa Barbara.  There is also, a state camp ground right outside of Malibu, called Leo Carrillo State Beach and there is another one on the other side of Santa Barbara, called El Capitan. There are many state campgrounds along this route.  Pacific Coast Highway/ 101 frwy.  If you have or know anyone that has AAA, you can get campground info for this area.  You are allowed to make reservations I believe 6-7 months in advance.  These places book up fast through the summer; so put a thought pattern to this if you seem interested when you come out here.
It really was nice to be somewhat normal for a change. I know fully normal will not come until after tx; but I will take somewhat normal anyday right now.  Let me know when you and your family will be down here.  Maybe we can hook up.  

cajun