Knocking on wood did me no good

Oh gee...sx hit me in the middle of Wal mart today. I was sooo happy that I felt great, and decided to go shopping. My family couldn't beleive how great I felt and the mood I was in was awesome!!! I've been in bed almost all day since. All of a sudden shile shopping w/ mom and my little girls, I got sooooo hot..had to leave so I walked out to the van, started crying and felt like someone hooked a vaccum to me and sucked out all of the fluid in my body, it was HORRIBLE!!! I was sooo weak and the headache was awful, and still is. I got home and started crying uncontrolably, my mom asked me what was wrong and stood there holding me and I said I don't know, I'm thirsty. She started laughing at me and then I was laughing and crying at the same time...the tears were like a waterfall and soaked my shirt. I drank 5 16oz. of water then went to bed FREEZING with alternating heat episodes...like I was standing in front of an open oven at 500 degrees. I'm so mad that this happened, it's them ants faults!!!! I feel so strange and like I can't see right, and can't think normal..WHAT IS THE MATTER WITH ME??? Will this go away?? Should I call the Doc if it doesn't and how long should I give it??? I got to go back and lay down for awhile again. Be on later as I probly won't be able to sleep as I slept alot today. This stinks!!!  Darn ants.

[mremeet]

Have you been drinking at least a gallon of water a day? That really seems to be rule #1 for lessening sides. Hope you feel better.

[EquineLori]

Oh, honey, I am so very sorry for you.  And I'm really angry at those ANTS!!!!  Yes, do put a call in to your Dr. and let them know of your headache.  The other sx after your first shot are probably normal, however tardy - others will have more to say about them.  I'm just sorry that your hopes were so high, only to be dashed so cruely.  I'm sure I've read in earlier posts that the first shot is the worst.  That's been my experience as well.  Except for the headache.  My new Dr. changed my Interferon from Peg-Intron to Pegasys because the Pegasys has a larger molocule and is less likely to cross the blood/brain barrier.  Also, are you on anti-depressants?  If not, perhaps you will want to discuss them with your doctor as well.  Pamper yourself.  Rely on your family and let us know how you're doing.  Much love to you from a supporter, Lori

[goldyn]

Just relax this is all normal, moms are great, sounds like she will be a good support for you, it took me about 3weeks to start
feeling what was normal on meds, and let my body adjust to it, you will be up and down , if you start feeling to much anxiety, ativan is a good calmer downer, you dont have to take it everyday  only when you need it.
hope all these rotten sides end for you soon....
Im on shot 35/48 and  I hardly ever go out on shot night..

[52TELE]

Hi mkella ,it all became real today , didn't it? Sorry it has to be this way , and I really cant say with 100% certainty that everything your feeling is normal for the treatment , but it really sounds like it to me.It really helps me to understand why I feel the way I do , that way I dont worry as much about whether or not it was a normal side effect.

Right now , it sounds like your going through the "flu like" symptoms.

Your body produces interferon naturally to fight off intruders. When you get the flu , headache , fever , body aches  , chills , etc.. It's not the flu virus that is making you feel that way .
Its actually the interferon that your body produced to fight the virus that is making you feel bad. When there is a major alarm in the body , that a virus is trying to invaid , you start making more interferon , the action of the interferon fighting the flu causes the fever. Its actually the body fighting off the virus that made you feel sick. So... every Friday night , you get the flu .As the level of interferon in your body starts to lessen over the first day or two after your shot , the symptoms start to fade away and you start feeling better. With me , the first thing I feel as far as side effects , is the day after my shot. I realize all of a sudden the I'm feeling pretty warm , I start to get a little bit hoars , headaches , etc.. I take tylenol immeadiatly and lay down and pretty much stay there until the fever breaks. After it breaks , you can actually feel the "flu symptoms" start to fade  , your head cools off and you no longer feel like your fixin to die.

Anyway , everything you are experience is  , in my experience , normal. Relax and know that we have all been there , most of us still there and we understand how you feel. Your going to find that its hard to discribe to your family how you feel. Thats why we use the "flu" explaination , everyone knows what that feels like and they can relate.

I've got to go girl , keep your family close by , they are going to play a huge roll in helping you deal with your treatment.

goodnight night and dont let the HCV virus bite :)
(that is so stupid)

[Mister beagle bailey]

What your going through is normal(flu like) it happened to me.  Just make sure you drink plenty of water and take tylenal to keep the fever down.  When I was on tx I took tylenal just before doing my shot and it helped.  Also when you take the riba eat something with good fat, it helps.
Hope you are feeling better.

Beagle

[mkeela]

Thank you all...I feel so much better emotionally than I did before getting your feedback. Kind of a safe feeling.Your words made ALL the difference. Good night and God Bless you all, mkeela.

[mkeela]

52Tele, you made perfect sense and I couldn't ask for a more perfect answer to my question. I understand now, and pray that others will see that and understand too.  Prayers for you!!!

[Bill1954]

Mkeela,

Sounds like you're starting out with a bang! You've already gotten really good advice already; 52tele gave an excellent play-by-play of the nuts and bolts of this engineered flu/hangover we call treatment. Now you understand why I usually capitalize the 'T' in Tx? This stuff is to be respected, big time. It really is a therapeutic poison.

Try to take heart in knowing that you're body is doing what it's designed to do; although in an accelerated fashion. The interferon is rushing in and spooling your immune system up in order to kill the virus. This will most likely be the most pronounced experience you'll have with these meds- things do change as you go along. You're body should become somewhat accustomed to the meds, and although other side effects will come and go, this is probably the worst of it.

If you can sleep, take it. If you can't, pamper yourself as best you can. You will most likely feel quite a bit better by tomorrow. If your Mom is around to help with the kids, etc, take her up on it. Don't try to bite of more than you can chew until you get acclimated to this stuff; it'll let you know fast if you do. I wish you didn't have to go through this, but most of us have to some degree anyway. Hang tough tonight, and let us know how you're doing in the morning, OK?

Best,

Bill

[ladybug52]

Well sounds like a rough day.  Good thing you have a supportive family!(here and at home)I thought 52tele's info was great because putting it in perspective--your body is fighting this disease--makes it seem that those awful symptoms are for a purpose. Your body is responding to the fight between the meds and the disease, you're just in the middle. Anyway it seems to make great sense when you're not the one suffering.  Hope you feel better, hang in there, hope you're feeling better soon.

[mremeet]

Well there's 128oz in a gallon. So someone would have to weigh 256 lbs to equate to drinking that much. Is this 0.5 oz/lb daily water intake the prescribed H2O intake during treatment, or just a hydration target for healthy people? Seriously, I'd like to hear more about this because I've definitely been under the impression for a long time that a gallon a day minimum is what combo vets recommend. If that's not the case, I'd like to know about it.

[BayAreaWomen]

Mkeela sorry you got hit hard with the first shot, I hope the worst is over for you.  I'm glad your mother was with you.  I have my husband here for me, although he will be a work during the day.  I will take my first shot on Monday at 10:30 pm. while he is asleep (i perfer it that way). May GOD be you now and always. BAW

[BayAreaWomen]

Ha! Ha! H1! That's why i love coming here - I gave a giggle while reading your post  90 degree with your hat on and cover. After reading Mkeela experience i was nearly in tears then read yours (funny). I glad you are doing pretty good. I thought your reached svr. Are you still treating? BAW

[cuteus]

mkeela
I hope it gets better soon for you.


mrmeet; at least a gallon of water a day?  that seems excessive to me. too much water can cause an electrolyte imbalance in some people and make things better. you got to listen to your body. if that 9 glass of water is making you sick, don't take it.

[sfbaygirl]

Yes, I was quite a sight. I had a wool hat with flaps over the ears that had strings to tie around my neck. My daughter in law kept putting blanket after blanket on me. She kept telling me "yes Linda, it IS cold." as she rolled her eyes...actually it was pretty funny.

Now that I know my sx hit me between 12 and 24 hrs after the shots I have started taking them early in the day so the sx will hit me at night while I sleep. Seems to help.

I am on week 16 of 48 week tx. So I am pretty new here myself. I didn't have SVR, I was UND (undetectable of the virus on PCR) at week 12. So I am here for awhile. I haven't calulated the date, just in case the date changes. I am scared to count on being finished in February sometime to avoid disapointment. But I will be around AT LEAST until then.

Your Monday shot will be easier on you than the worry beforehand. You may have sx, but you will be fine. Let us know Tues!

Linda

[mremeet]

So a gallon a day is excessive? Normally I would never drink that much, unless it was very hot and I was exercising. I haven't gone through treatment yet (start in mid Aug), but if there's one thing I've heard over, and over, and over again from those who have (over the course of nearly ten years), it's to drink LOTS of water. At least a gallon a day in order to minimize side effects. I also asked my RN about it and she concurred it was important to drink lots of water. But again this is not from personal experience, it's just what I've heard from many combo vets. Have you undergone treatment yet? And possibly found that a gallon a day is excessive?

[52TELE]

Hey mremeet , I think the recommended amount of water per day is
1/2 of an ounce per pound of body weight . When your a big guy like me , it seems like a gallon.

[sfbaygirl]

Sounds like what happened to me. I felt great until it hit me like a brick the next day. It didn't last long, thank goodness. But I was piled high with blankets and a hat in 90 degree heat for 6 hrs or so.

Shopping can be dangerous. Since I am on tx I have saved SO much money by not going to stores, I can't tell you! That's the good news. It seems that I get hit by a mac truck and it feels like the the blood just drains outta my face. I have to leave. So now I make my trips (if I go) short and sweet. My energy level won't allow me to do much at one time, so I have to really pace myself when I go anywhere.

Hopefully this first shot will be the worse and it will be better next time. I have found that after 15 weeks that I am getting used to the tx and sx and I am not as freaked out about as I was at first.

Wishing you well,
Linda

[cuteus]

here is one article you might want to read
http://www.mayoclinic.com/health/water/NU00283

it refers to fluid intake, which includes other liquids, not just water. Other fluids count towards the requirement, and the nutrients in them like potassium, could counteract any mineral imbalance.
the rumor of drinking tons of water comes from the medications that were processed through the kidneys primarily. Some people are on Pegasys, which is processed through the liver primarily.  
drink enough but do not overdo it, listen to your body, if you feel sick from drinking, it could be a signal.

[mremeet]

Thanks for the info, but that link only talks about the general concept of hydration, and does not specifically address the very special/specific situation pertaining to combo therapy. Plus, the notion of overhydrating, while possible, is unlikely for an average person who eats the usual american diet which almost always has more than enough salts in it to prevent electrolyte imbalance, and isn't running marathons in 100degF heat (an unlikely feat for someone on combo treatment). So with all of that said, the question remains: does drinking a gallon of water or a little more a day help to diminish the side effects associated with treatment?

[cuteus]

no one can answer that question at it relates to chemo only. everybody has different needs. But by reading what a person normally needs, the factors that might increase that need and by how much (approx), then reading the symptoms of underhydration, you can determine what is working for you and how much you as an individual might need to stay well. Everyone does not need a gallon of water, and by what that article says, males MIGHT need 13 cups a day. perhaps if you google hydration on chemotherapy some useful hits might surface. also google excess water intake and read the results.
good luck