I Need some help

[night cloud]

I'am on my second week on Pegasys. My biopsy read moderate damage with no fibrosis yet. But in the last 6 months I have been feeling really sick. My lymph nodes in my lower right abdomen and my right side of my throat would flare up and the pain was unbearable. It feels like a huge infection.This is why I decided to do the treatment.I would take vicoden to get through the worst days.Now 2 wks into this my lymph nodes are so painful that I CANNOT STAND IT.I'm really pretty tuff BUT THIS IS TOO MUCH.Also when my nodes flare I get a terrible pain in the left side of my brain.When I told my doc about this he said these symptoms were probably caused by something else not the hep c but I doubt this.MY QUESTION IS- If I do have some other unknown condition could the pegasys weaken my immune system to the point that this infection could rage out of control? Or is the treatment warring with the infection and should I just hold on and try to make it through this? I'm going to see him today and would like some input.

[cindee]

Hey you people are the "best"!

I am feeling better today! We got "our" school shopping done...except for new tennis shoes @ bookbag! K.'s carried the same l.e.i. (brand name of course for her) LOL!!!!!!for 3 years now!!!! We only spent 235.00 today!!!!! LOL I can't believe how long her "school supplies" list was. We got it all in one stop @ STAPLES!!!!! Great prices!!! So 2 more things and we are DONE!!!!! I am so glad!!!!

But if anyone out there is shopping and has a STAPLES office store close by, they had the best set-up. They had everything listed in alphabetical order and in a clear folder attached to the shopping cart! It was a breeze, and made it so easy to shop!

So for all you fellow heppers....and I know sometimes shopping is hard..and very tiring!!!! STAPLES has a great set-up! I just knew we were going to have to go from store to store to store....but what a "blessing"! We really had FUN today. And we found her some shirts, that are still in uniform code, but not the same mundane knit shirts...like from Land's End. We found her some cute tops, that were "different". Our "angels" went shopping w/ us today!!! LOL

I was sooooo worn out by the time we got home, but the trip was really fun! She got to eat lunch @ McDonald's, and she was very happy about that! We live in such a small town, can ya believe we don't even have a McDonald's here???? Heck they roll up the roads here @ 9pm!!!! She only gets McDonald's when I have to go to the doctor!!!! LOL Pretty sad huh?

But I did have to take an extra pain pill, when I got home.

OH my gosh, last nite we went to her school...thinkin' it was orientation nite....well, we were only a week early!!!! It was halarious!!! But she got to see and talk to her 5th grade teacher. She was there getting her room ready for the school year. Randy even got off from work early...LOL...we were all "gussied up"!!! LOL So we took that time to go out to eat. So we've had some fun the past couple of days.

I called to check on Betty when I got home. For you who don't know, she's my 2nd Mother who is dying of cancer. We just found out about 6 wks ago.

She sounded so weak. So I immediately hung up, called Randy and told him where I would be. Ya'll she was laying in the bed....first time, I've seen her so sick. She told me she "felt" like it wouldn't be much longer. I knew what she was talking about.

Her head was hurting so bad, and she was holding it. Her hubby is almost totally deaf and it's hard for her to have to talk so loudly to him.

But I kissed her forehead about 5 or 6 times, and I was praying the whole time for God to please relieve her headache. I stayed about 30 mins. and she told me, she hadn't told her daughter's how she was feeling, about not having much longer to live.

She said, "I've got about 30 more rows to finish my great-grandson's afghan, and I hope I can get it done." It broke my heart for her to say that. I know she won't LET GO until she has it finished. I told her after that, she can not worry about another thing, and not to fight going on to meet her maker.

I couldn't stay any longer because K. was @ home, cleaning her room and I promised her I wouldn't be gone long. Betty and I held each other's hands the whole time I was there. Boy it was hard to HOLD UP for her, until I got out in the yard....our yards connect.

Before I left she said,"honey, I feel so much better...since you've been here...I just might get up in a little while and go finish that afghan." Her neck was hurting...but her last scan showed no cancer there, or in her brain! Thank God! I asked her if she had some arthritis lotion to rub on her neck, and she said she hadn't even thought of that. So before I left I asked her hubby to go in and rub her neck.

Ya'll as soon as I got out in the yard I was crying so hard! I know it's the "human" part of me, but I don't want her to pass. But I have prayed that God have his will and it be done. I don't want her to suffer anymore.

I could go on and on about her, but I know this really isn't the place for it. I just ask you all to PRAY for Betty and her family. It is such a "close knit" family.

Thanks you guys for listening to me. I just had to talk to someone. And you are all my family. I love you all so much and I sincerely mean that from the bottom of my heart! I'll close for now, but I want to wish everyone who did their shot today...well now yesterday..it's 12:07am...little to no side effects.

I hope you all have a wonderful week-end and remember, if there's anyone who anybody may have had a "spat" with recently....make it up to them. We never know how long we have on this earth, and my best friend and her Mother had been at odds with each other, when suddenly her Mother passed, before she had the time to say,"I'm sorry". And my best friend's heart aches everyday for that.

I love you all and you are in my prayers!!!!!

BTW Today is "derail's" BIRTHDAY!!!!!! HE HAS BEEN A BLESSING TO THIS FORUM AND HE'S A WONDERFUL "FAMILY" MAN!!!! SO "HAPPY BIRTHDAY....DARYL"!!!!!! I LOVE YOU!!!!!! Cindee

[Showboat]

Hey, girlie.......I am sorry to hear that you have to still sleep on the couch.....at least you tried the bed.....I am glad you are going to talk to your doc about your back.  I did not know that you had back surgery before. Even though you are in such pain, you always have a positive attitude and send out so much love and your cyber hugs.......Thank goodness you were able to get your neighbor to come and help you pick up your pill before the dog came in.....I remember having to moan and groan as I bent down to pick up the ole riba before one of my cats got to it.  Ouch!!!!!!  Hope things get much much much better for you soon.......You are a lovely lady!!!!! Love, prayers and peace to you.

[night cloud]

I found this info about hep c and lymphnodes <p>                           Lymphadenopathy: Lymphadenopathy is swelling of the lymph nodes. Lymph nodes are normally about the size of a pea or a kidney bean. Because HCV infects the lymphatic system, it frequently causes the lymph nodes to swell. The lymph nodes of the armpits, groin, and neck are relatively close to the skin surface, and are usually examined to see if you have lymphadenopathy. If you have lymphadenopathy, it may or may not be painful when you press on the swollen lymph nodes <p>
Honestly I feel like Im goona pass out

[cindee]

Hey you! It won't be long now for us will it???? I am so excited to get started again. I've tried to e-mail you, but they keep coming back. E-mail me as soon as you can. I e-mailed you a "book"...LOL and it came back...dang it! Anyway Indy got my pic posted on HotHeps, I couldn't remember if I told you that. I had your e-mail in my file...but when hubby had to have laptop fixed it erased my e-mail addy's. I tried to remember yours from memory, but I've got something wrong w/ your addy!!!!!! @ my brain!!!! LOL

I tried to sleep on the sofa last nite...still had a BAD time this am. So I am definately getting an appointment w/ doctor who did my L5 disk surgery 10 yrs ago. I guess he'll order a MRI to find out what the heck is going on!!!! Dang, w/ all the morphine in me, you'd think my back wouldn't hurt so badly! Oh well...I'll be fine...soon I hope!

G.daughter and I have to do some school shopping tomorrow, so I told hubby to wake me @ 5:30 and give me my meds so they can work before I have to TRY to get off the sofa!!!!

LOL Thank-goodness g.daughter wears school uniforms..it makes shopping a lot easier!!!! But the tennis shoes she wants are ONLY...LOL....$78.00!!!!! But her Dad does send her about $400.00 a month! She has to put 1/3 in savings...spend 1/3 for clothes, jewerly...girl stuff..etc. and 1/3 for whatever she wants. She is getting her own phone line in her room, mostly for her computer, her Mom, gave away!!!! Thank goodness, she gave it to one of my best friends and she wants K. to have it back!!!!

Remember e-mail me soon! So I can have your addy again! Much love @ many prayers, Cindee

[cuteus]

bloodwork is the only test to determine viral load and genotype at the same type. They can determine genotype thru the biopsy but the blood needs a special process to be viable for vl.'
My hepatologist said NO to rogaine, Rx vit e, zinc and biotin for the hairloss, plus Nioxin products.
Milk thistle offers protection to the liver from toxins. My feeling is that the toxins we are taking to kill the virus might be hindered from entering the liver by this herb. I was taking it infrequently in the beginning of Tx and did not clear the virus by wk 12 even though my Vl was low to start with. coincidence maybe. My doc said no to this herb while on tx.
You can most anything you like, but taste buds might act out and you will determine what you can tolerate.
I remember you said your veins were shot from the Iv use, but regular blood work is a must while on these meds, what is the dr going to use? maybe a temporary shunt?
Susan and vicki are two of the combo 1a, 1b in this forum. Psychodoc USED to be, she is now SVR.
I wish you the best in this trek.

[jonihs]

Sorry to rain on your parade, but your Dr. must be incompetent to put tou on Darvacet. Tylenol is a definite no w/ liver problems, and the acet is acitaminivin which is tylenol. Get him to give you something else or get a second opinion. Given what you have told us so far, I would just change Dr.s.  Joni

[derail]

hey girl sorry you are feeling el crapo its not much fun .good to see you posting again and its great that your little whiz bang Kyliegh is such a good kid That really makes up for all the other bullcrap, doesn't it any way its just before 1 am now and I'm catching up on all the posts. hope everything gets better for you and I'll talk at you later. ((((HUGS)))

[cindee]

Hi, I had a lot of pain when I was on tx. I had my GP refer me to a "pain specialist". I was put on morphine 45mg 3x's a day. The first question I asked before I went into the doctor was did they treat any Hep patients? The answer was yes! They even have a pychologist there who studies hepatitis. My new hepatologist has NO PROBLEM with morphine. That was the first question I asked him!!! LOL So get to a pain specialist...they KNOW what they are doing! I pray you feel better soon. Hep sucks! Love @ prayers, Cindee PS I did 48wks of combo and unfortantely I relapsed. I will be starting a clinical trial in Oct. I was an early viral responder and undectable thoughout tx and then 4 months after tx I had relapsed! Oh well, life goes on. I'm sure I'll make it this next round...my bx in June was great! Grade 1...stage 0-1...with no scarring! Really good! So the tx did some damage to my virus. I wish you the best! Sincerely.

[MichaelT]

Pain killers? Heroin and dilauded are at the top of list. Just kidding, the doc won't give you either one. Methadone, a heroin substitute, is a pain killer I like because you get 5mg pills and you can vary the dose to a small degree plus add Advil or Tylenol to augment it.

[mythoughts]

Night Cloud - Did you say that health insurance companies test for Hep before siging you on? I have hep b & C  and will never get insurance at that rate.................I'm so upset! I'm only 28 - is there any company that will insure without blood tests?

I just got dx last week & HAVE BEEN TRYING to post a question for 5 days. I work on the computer & have tried at every hour on the damn hour, but no luck - it's always full - even at 3am.

So, my questions are slightly off this topic, but I would be GREATLY APPRECIATIVE if someone could help me sort these things out......

1. Is there a test that ,y husband can take to find out his Hep +- results as well as his genotype (drawing blood is hard so we want to reduce the tests)
2. Can I still eat spinach(has a lot of iron), coffee, chocolate, Vitamin B, etc...?
3. What about Rogaine for women (my hair is falling out. I am not on treatment yet - just have B & C).
4. Is milk thistel ok? I know it won't help the virus, but will it be ok for my liver?
5. Is it possible for me to have 2 different types of genotypes? I used to use IV Heroin, so I could have been exposed by different people/types. Is that much worse for you or does one supercede the other?
Thanks!

[jonihs]

Yes they can test for both hep and genotype and viral load at the same time, but you have to request that. Milk thistle is okay pre tx. Any iron you get through your diet I'm sure is fine, however no iron supplements. Take B-complex and a daily vitamin that is for seniors. No iron in those. Once you have been clear from the virus for 5 years, you can get life insurance and I'm assuming health insurance. If you have insurance now, do everything you can to keep it. I'm not sure about more than 1 genotypes. Hopefully someone will come on that can answer that 1. Hope I helped.    Joni

[DH Bill]

They will not give you life insurance with HVC until you have been clear for 5 years but health insuranc I believe yes.

We usually only get 6 threads per day and they are used up very quickly in the morning.

They took all my blood tests at once to determine geno and all that stuff.

I could eat most everything but were all different. Iron would depend on your iron levels which they should test for.

Don't know much about rogaine, someone will though.

Milk thistle is not bad for you but Iv'e heard it cna screw up the results of some blood tests.

There are people on this site with two different geno types such as 1a and 1b.  I believe tx (treatment) works on 2 geno types also some one will come along who can answer that.

Keep coming to this site you will find some real good help here. It helped me get thru 48 weeks of tx

[susan400]

I am 1A & 1B.   Susan

[mythoughts]

Susan - do you think that you got it from 2 different people/exposures? Maybe they had two genotypes, as well. Have you been treated or are you on treatment? I know that some types are harder to 'kill' than others, but is it harder to kill 2 types than one just b/c you have 2 types? Does that mean that you have 'more' virus levels in you? So many questions.......

Also, someone told me that their friend went to a natural doctor who used something called a 'rife'. He said it was some sort of radiation tx (natural) that killed bugs. Their friend treated with the rife for one week & there viral levels disapeared. Apparently it's cheap, too. Anyone heard of this?

[night cloud]

Thanks to all. I'm off to the doc now.

[honey1616]

Hey!!  Haven't talked to you in awhile and was just thinking about you!  haha Actually thinking with Cindee/Derail both starting at same time,,,this is going to be fun!  Your first round with tx,,,were you on full dosage whole time?  Its just strange to me with the great biopsy and other factors of no detect early on,,,That you didn't clear???  You said first round you had no biopsy,,,,I wondered if the tx helped give you that excellent liver haha  Hope all is settling down for you at home as I know you don't need the added stress starting tx! Have you seen or talked to Sandi?  I hope she is ok because she hasn't posted in quite awhile!  Love ya Girl!!

[cindee]

Hey there girl! Yep I was on 1000mg of Rebetol (ribavirin) a day. And my pegasys shot on Friday's. I was EVR and undectable thoughout tx....then BAM!!! 4 months post tx I begged for a blood test and found out I had relapsed! I only know of 2 capsules I missed and I don't know when...I found them in a housecoat pocket one day! LOL My doctor told me. when hubby and I were given a "free trip" to Myrtle Beach, from his sister, that I could NOT take my riba for that week...but I did anyway. So I never missed anything but those 2 caps. That's why I qualified for my clinical trial study. It has all hepatologists baffled...so my new doctor tells me. The way I look at it, it was in God's plan for me. A lot of ppl would just "give up". But heck no I'm NOT!!!! I hope this trial doesn't just help me, but helps a lot of other people too. I called my hepatologist office yesterday to see what "meds" he will be using. The nurse called back and said I would find out in Oct. OH well, it's not that far away. I just wanted to read up on the "meds" I will be on. I'm not going to worry about it, just gonna DO IT! LOL I think the combo did some major damage to my liver virus...I HOPE! LOL You're right my first "goofy" doctor didn't do a bx. But the one in June was wonderful!!!! I was wondering if my v.l. had dropped, but my new doc says he doesn't worry w/ those. Soooo I won't either!!!! LOL

I had a horrible day today. I tried to sleep in "MY" bed last nite!!!! I love it, but I guess I got too comfortable and slept on my back all nite. When I woke up, I was in so much pain....it took me about 10 trys to get outta the bed. I got my "faithful" cane, and made it to the potty! I had to use my cane to roll off the tissue paper! I used my cane to pick up my "footies" (socks). I finally made it to the kitchen after 20 mins.!!!! I keep my meds in a pudding cup..a little white cup. Well girl, I DROPPED one of my morphine pills, and I couldn't bend over to get it...I tried to pick it up by using the rubber tip on my cane!!! No Go!! I was afraid to go into Kyleigh's rm, for fear her doggy would get out and get the pill...I had to call my 80yr old neighbor (going on 21 LOL ) to come to HELP ME!!!!! Well long story short...we got my meds in me...she put my socks on me...put me in the recliner w/ the HEAT and vibration...and has been back 3x's to rub my back w/ mobisyl. Boy have I felt like a "goon" today!!!! But I wanted to sleep in my bed. Hubby ordered me..well us..one of those "toppers" made from a poly that NASA dicovered to use on flights. The topper is on QVC.com, if you'd be interested. It conforms to the shape of your body, and it keeps your spine in total alignment. I love it, but I have to sleep on the sofa...w/ a pillow hubby ordered me from QVC. It keeps me on my side, being on the sofa. I miss my bed so much!!!! But I hope I can get back to it soon. I might call the doctor who operated on my disk about 9 yrs ago and get a MRI to find out what's going on there. I know I have fibromyalgia and tissue damage...but dang!!!! I don't think it should be causing all that! I've thought about putting that huge pillow hubby got me, behind me..when I get in the bed...so maybe I couldn't turn over on my back...but NOT tonite! Kyleigh and I have school shopping to do and had planned to do it today. Thank goodness she has to wear a school uniform...shopping is much easier that way. And all the children look so nice. NO HOUCHEY MAMA'S @ her school, and no boys underwear showing...w/ their pants hanging on their butts!!!! LOL When she dresses for school, she looks in the mirror and says, "I look like a college student" and just smiles......LOL. We have 6th grade honors orientation tomorrow eve @ 6pm. I can't wait to see the classes she'll be taking! I know she in literature...she had to read a book, and have a report ready for the first day of school...and be ready to test on it. She's doing "footnotes" and all....sniff-sniff...she's growing up so fast!!!!! I hope you and hubby are doing good, tell him "hi" for me. Well sweetie I'm going to go. I love ya bunches and YOU know I am praying for the both of you! (((HUGS))) Cindee

[night cloud]

Update..The doc decided to take me off treatment till he he solved the lymph node swelling. He tried the advil bs but hubby chimed in and I got some Darvocet. The pain is now tolerable. Took some blood to check white count and I'm to call him back Friday. He said he will probably do a biopsy on lymph node. Geeze I had a crummy week -

[donAlfonso]

Sorry about your lousy week, but glad to hear lymph trouble is being looked at.  And good job by your wife.  Pain sucks.  Take care.

dA

[honey1616]

Ohhhh You are having some bad ones!!  I feel awful for you as I can only imagine the pain you must be going through if you can't even bend over.  And you now have a cane???  Ok...I'm hoping so bad that you get that MRI because I agree with you,,,I have done research on fibromyglia but it shouldn't be putting you through this!  And its got to be addressed before you start tx because that is going to make things so much worse for you.

Kyleigh sounds like a real sweetheart and I know you are so proud of her and yes,,,,they grow so fast,,,it does make you sad but enjoy!  I'm glad you have her there with you and all the support of your family!  Let us know,,,about how you are doing!!  Love and Prayers!!

[cindee]

You are a sweetheart! I feel 85% better now, than I did this am. I have all my morphine for the day, in me now. Milie came back @ 8pm and rubbed my back again. She's the "best"!!! I am not going to chance sleeping in my bed tonite...sniff-sniff! Kyleigh and I have to get out tomorrow and then orientation tomorrow nite. Hubby is getting off work early to go w/ us! YEAHHHH!!! He's great to always be involved in functions w/ us at Kyleigh's school. We're lucky to have him! So don't worry about me...I'm one tough coo-coo....lol I mean "cookie"!!!! LOL You take care , we'll talk soon. BTW I just e-mailed LVDBYGOD...her "puter" was on the blink last I heard from her. She could receive in-coming, but couldn't do out-going, said something about putting it in the shop. I'll let ya know if I hear from her. Helen and I are meeting after Christmas. She has family in NC and I'm only 1 hr away from NC. Wish you @ I could meet someday. Sending lots of sunshine and good health your way. I love ya bunches! Prayers, Cindee

[honey1616]

Hey,,,Sorry to hear that you are experiencing so much pain.  I am not a doctor so certaintly couldn't tell you what is causing this.  However,,,I can't believe your dr when telling him,,,said probably not hep c related but then got you started on tx?  Is this correct?  It sounds to me like you needed this all checked out as non hep related and taken care of whether it be medicine before getting you started on tx.  I can see now where you could be have the added stress and pain because it does seem like the meds can enhance what you already are experiencing.  Demand to your dr,,,,That you want to know why your lymphs are swollen and why you are in pain... Good Luck and let us know...

[cuteus]

I took vicoprofen, someone took fiorecet i believe. You are safer with a central nervous system acting analgesic, which includes most narcotic based meds. It is imperative for our continuation with tx, or some of us, to be managed for pain. If they prescribe advil and you have to take up to 800mg per dose to get relief, it is not good for your liver, tell him the lesser amount of the most effective med is what you need. I am concerned about the nodes...I hope is nothing. He should send you for a brain scan(my PCP did when i had my pain).
GL what time is the appt today?

[night cloud]

Sorry bout the double post.