I Didn't Think I Could Feel Worse But I Do

The last 10 days have been real pips. I took my 12th Pegasus shot last Friday and still taking Nupogen. I can't breath and if I loose my breath I feel like I will pass out so I just sit down quickly. my throat is sore all of the time and the Ambien is giving me about three hours solid sleep per night. I've maintained the water intake and do whatever the doctor asked but I've never felt so bad. I thought it would get better but the breathing thing really scares me especially at night when I loose my breath and can't seem to get it back quick enough. Today I go for 12 week check but while I am very confident in my doctor his attitude is that its all part of the treatment. My attitude is that feeling this badly doesn't give much in the way of quality of life. I'm starting to feel like a millstone around my wife's neck. Anyway any encouragement or thoughts would be appreciated. Dale

[sindog]

Sounds like anemia to me. I had a sudden drop, and that't the way I felt. After a while I go used to it.

[NYgirl]

When my hemoglobin dropped 7 points in about a week - I was physically devastated. I kept fainting. Could not walk. Had trouble breathing. Ringing in ears. Exhaustion.

It sounds like you have experienced a drop and need to go have a CBC right away (you should try to have weekly or twice a month at least) and talk to your doctor about hemolytic anemia which is what we get.  

Going on Procrit or Epogen will fix this problem BUT it takes a few weeks to kick in and start growing red blood cells.

I'd advise you to go get the CBC immediately and not to take no for an answer.

If that is it...it wont get better it will only get worse.

[FlGuy]

There is a lot of good news that can come out of your appointment today.  Your doc should order a 12 week pcr today, with the results back in a week or so.  After 12 weeks on tx you will probably see a decrease in the VL, if detectable at all.  Being out of breath and feeling beaten down sounds like anemia (low hemoglobin aka hgb) if its lower than 10 - that's probably it or if you have a significant drop in a short amount of time.
Make sure that the doc orders both a pcr (for the VL) and a CBC for all your other blood readings.  Since you are already on Neup the doc already has a line to compare the blood values from the last test. You should get the CBC results back with 24 hours.  If the hgb is low the doc can order procrit (aka epo).  The procrit can take some time to have effect.  If the doc is good, as you say, he should be all over it.  Ask him to step in with needed meds to get you over this hump.  Try to avoid reducing or stopping meds.  Don't leave the office with him telling you what he intends to do.  In your weakened condition try to have friend/spouse in the room with you and doc so they can pay attention for you.  There may be some vitamins that may help in the short term.  Someone will come along to give you further hints.
It's just a speed bump DR.

[can-do-man]

Thanks for the link, interesting news. I'll take a pill over a shot anyday. So how you being doing?

Same news just used tinyurl to make the link shorter

http://tinyurl.com/bfajx

[mrodriguez112704]

I KNOW EXACTLY HOW YOU FEEL.  I JUST COMPLETED 24/WKS. ON 2/03/06.  MOST EVERYONE SAYS THE FIRST COUPLE OF SHOTS ARE THE WORST; BULL!  MY 1ST THREE WERE NOT TO BAD, JUST THE ACHES OF FLU-LIKE SYMPTOMS FOR 24 TO 48 HRS.  IT WAS JUST AFTER THE 3RD SHOT THAT I THOUGHT I WILL NEVER COMPLETE THIS TREATMENT!  HAD IT NOT BEEN FOR MY HUSBAND, FAMILY AND FRIENDS I WOULD HAVE TOLD THEM WHAT THEY COULD DO WITH THEIR TREATMENT.  EACH NIGHT I JUST PRAYED TO GOD THAT TOMORROW WOULD BE BETTER.  WHEN I WAS READING YOUR POST I COULD FEEL WHAT YOU ARE FEELING, IT SOUNDED LIKE I HAD WRITTEN IT.  THE MORE TIME THAT I DID MY TREATMENTS THE WORSE I FELT.  AS I HAD POSTED BEFORE, TAKING A SHOWER WAS LITTERALLY EXAUSTING; HAD TO SIT DOWN JUST TO CATCH ENOUGHT BREATH TO DRY OFF!  LUCKLY, I HAVE A WONDERFUL EMPLOYER WHO WAS VERY UNDERSTANDING THE LAST SIX MONTHS AND REALIZED ALL I COULD USUALLY DO IS SIT IN FRONT OF MY COMPUTER AND DO NOTHING, BUT FEEL LESS THEN HUMAN.  BUT AS BAD AS I FELT THOSE MONTHS, I'M GLAD TO SAY: "THERE IS LIFE AFTER TREATMENT", AS I SAID EARLIER I JUST TOOK MY LAST SHOT ON 1/27/06 AND LAST RIBA-_ _ _ _ _ PILLS ON 2/3/06.  TODAY IS 2/14/06 AND I CANNOT BELIEVE HOW DIFFERENT AND DEFINETELY HOW QUICKLY I HAVE STARTED FEELING LIKE IT WAS WORTH IT.  I AM A GENO 3 AND AT 4 WKS. UNDETECTABLE, EARLY RESPONDER.  NOW I AM JUST WAITING FOR THAT 3/MO. & THEN 6/MO. BLOOD WORK!  I WILL TELL YOU THIS, SHOULD I RELASPE THEN IT IS MENT TO BE.  I WILL NOT TAKE THIS CURRENT TREATMENT EVER AGAIN.  NOWAY WILL I FEEL LIKE I WANTED TO DIE FOR ANOTHER 6 MONTHS. ANYWAY I TRULY WISH YOU THE BEST OF LUCK AND HOPE FOR YOUR SVR!!!! TAKE CARE OF YOURSELF ONE DAY AT A TIME, AND LOOK TO THE FUTURE OF FEELING GOOD AGAIN, IT WILL HAPPEN!

[MissMiss]

http://yahoo.reuters.com/stocks/QuoteCompanyNewsArticle.aspx?storyID=urn:newsml:reuters.com:20060214:MTFH74377_2006-02-14_16-38-03_L14768350&symbol=GSK.L

I hope the url comes through.  Here is the headline:
UPDATE 1-Glaxo launches pivotal trial for new platelet drug

Guess what!  It isn't an injection but a pill!

I bet I am behind times but just wanted to share this.

missmiss

[NYgirl]

Congrats on being DONE!  Now we both know you are CURED and can come in here and let others know how worth it it is to make it through treatment!

I find that in the beginning I had NO flu symptoms at all with my shot and it's only NOW after 20 weeks that I began to get them.  I had a 105 fever almost the other night and it was dreadful! Thank GOD it went away and wasn't the real flu that would last for days cause it was too much!

I guess everybody truly is different some getting none some in the beginning etc.

I tell you one thing - getting OVER a side is like a second chance at life...it's like ahhhhhhh life is worth living again!

It shows you how much we take our "health" for granted doesn't it.

[Mister beagle bailey]

I agree with all here, it was anemia with me and the procit had to be given every week instead of every 2 weeks.
Your not alone, hang in there and let your Dr. know you want your HGB tested. Almost all have a problem with anemia after starting meds.

Hope this helps,


    The Beagle

[FlGuy]

Dale Ray.  How did the appt. go yesterday (2/14)?  What did the doc do/say?