shortness of breath

[merlino]

Hi All, did second shot Friday. Starting to notice just climbing up stairs in my house leaves me winded. I didn't have any major sx with the second shot except for this and I am starting to feel weak.It was an effort to shower, blow dry hair for work. I had to stop and sit down twice. Isn;t it too soon for this to start happening. I had cbc done on saturday. Dr appt tomorrow. Also, my lips are so so dry. No matter how much chap stick I use.Then, last night I ran my hand through my hair and it hurt!! I know this sounds crazy but it did.

[merlino]

I had cbc's done saturday. I see dr tomorrow. My laundry room is down stairs and doing laundry is how I first started noticing this. By the second trip up the stairs I had to stop and rest. Its terrible!

[FlGuy]

At 1000 mg and at your weight (120 ish if I reacall), you are on a fairly high rate of riba - which is ok. But, one of the riba risks is anemia which, hopefully, your doc will identify and treat quickly and aggressively. You'll probably see tomorrow (resluts of the cbc) that you hgb is in decline - it should be.  Need to work out with the doc when he'll take action.  He'll compare the various hgb level (pre-tx, earlier cbc's and now) to determine a trend.  When you and doc look down the road a few weeks remember you don't want to get in a situation in which you reduce doses.  My insurance Co. will pay for the intervention meds when they are below hgb 12. Also, you might have the option of having doc administer in ofc or to get a written rx.  IF you go for the rx and plan to self-inject (or a friend) you might need to deal with your injectable insurance friends again. Maybe make a few prelim calls.

[painterlady13]

My HGB dropped just as quick in the 3rd week, and it killed me just getting up the stairs to get in the house.  I'll bet that is what it is... HGB good luck with the test results.

[merlino]

I am going to call the nurse in charge of getting my meds now. I wish i weighed that much. I am down another lb leaving me at 104.

[Cindy10]

Glad to hear I am not alone, the fatigue and shortness of breath are definately overwhelming. My hgb was 12.9 before treatment and docs says getting much lower. But insurance co
wont pay for procrit yet. Not that I want another shot! I just hope it levels off soon.

[FlGuy]

Your insurance company may have a different perspective on the coverage of procrit (or similar) depending on if it perscribed or if the doc administers it in the office.  From wht I was told, the discretion of the doc administering it in offce may be wider than the allowable levels if perscribed.

[NYgirl]

The second or third week my hemo dropped from 16 to 9 in ten days.  I didn't think it could really be THAT drastic - every time I went to stand up just about I fainted dead away. It was one of the worst things I've ever gone through in my LIFE.

Treatment is NOTHING compared to how bad my anemia got, and how FAST it got there is what made it so bad.

Please get a CBC right away and stay on top of it.  Our anemia is NOTHING like regular anemia that people get and it is DANGEROUS.

Be careful on stairs and driving and things like that.

Please...go get a test ASAP because if you had a drop like I did (and my doctor REALLY did NOT believe that my problem was anemia that quickly and told me to get a chest xray hahaha idiot) you are going to need Procrit and fast.

[Cindy10]

Thats good to know, I am having more blood work Friday so I'll check with the doc. Thank you!

[merlino]

I just got off phone w.dr office. They are having Lab fax over cbc's. I hope I don't have the same problems I did getting meds. FLGuy, I am sorry to hear you had a rough weekend.You do have a gift in all this that I wish I had. The support of your family. I can;t even begin to tell you how hard it is to feel so lousy and not have anyone there. How is your cough? Mine is worse. Is there anything we can take for this?

[Kalio1]

Keep up the protein powder drinks several times a day and protein smoothies so you can try to keep some weight on.
I know it's hard to eat if you have no appetite, those protein shakes and smoothies saved me.
Hang in there, that shortness of breath things is just awful. Take a few steps, sit down and rest LOL
sounds crazy and makes everything so hard and take so long. DOing laundry turns into a monumental task. Things you used to do that were so simple like laundry are now major accomplishments!
I agree with the others, probably an Hgb drop. Hope it levels out for you, mine did. If I dont push my luck and go slow I can hack it,my Hgb hangs around 10 most all the time.

[friole]

Isn't it amazing that a drop in hemoglobin just changes  your whole life.  Please do post those CBC results today if you get them.  My hemoblobin dropped into the 12's in week 2.  The doctors probably won't do anything yet, and you will adjust to the lower level, but it takes time for the adustment.  Just take things slower and rest often
frijole

[merlino]

How are you doing? I haven't tried my protein drink yet. I do take beet powder w/juice every day. I miss Rocker!!!! I am a little frustrated becaue this is only week 2. All you guys who are tx again and those who have extended tx,  bless all of you!!! You all have amazing courage. I feel so wimpy.

[merlino]

How are you? I think a lot of my problem is that I am continuing to TRY to live as if nothing has changed. I was so angry this morning when I had to stop getting ready for work. Will let you know results as soon as they call.

[friole]

I am fine, thanks.  I started taking Procrit at about week 12 when my hemoglobin dropped in the 10s and took it thruout tx.  For 3 months after tx, my hemoglobin stayed in the 12's and I think it is finally coming up now.  

Life after tx is good.  I am feeling good - even going camping this next weekend (never wanted to do that on tx - never wanted to take that shot in a tent!)

[APKhaos]

Critically low HGB is probably the most debilitating side. Aside from making simple things a real chore, it made me feel bloody useless on occasion. Mine started at 15 pre-tx, dropped to 10 in around 60 days, and has been bouncing around between 10.5 and 9.8 ever since.

I'm saying no to Procrit because the idea of dealing with another set of sides is an ugly thought.

The real trap with this is that on some days I get back to almost normal and crank through a ton of stuff. The next day can be ugly!

[merlino]

What exactly are the sides to procrit?

[NYgirl]

I never had any sides with Procrit at all.  Nothing whatsoever except after a couple of weeks I could breathe, walk from the parking lot to my office building instead of having to sit down 2 or 3 times on the way in the 50 yards.....things like that :) It TRULY saved the course of treatment for me I could NOT have continued without it.  I've been on it since week 3 or so now...they would like to get me off of it but I can't or I drop like a rock again.

You said I am going to call the nurse in charge of getting my meds now. I wish i weighed that much. I am down another lb leaving me at 104.


Boy I RELATE.  I lost SO MUCH weight in the beginning (20 pounds) and I was too thin to start. I want to let you know though that I've gainned it all back now...slowly a little bit at a time it DID come back on.  People even have noticed and said how much better I look.  Most people can't understand that being "too skinny" is just as bad as being "too heavy" and the comments they make towards US are just as insulting as saying to someone "wow your so FAT!".

The only thing that saved me was ice cream, the most fattening and DELICIOUS thing in the world.  My GOD I ate (eat) enough of it for ten people - without it I can't imagine how emaciated I would have been. Maybe it will help you too!

[merlino]

Deb, the procrit is for my HGB right? and the Neupogen is for my platlets? Between looking  at my cbc's and what drug is for what is making my head spin.

[FlGuy]

There is really no approved rescue drug for low platlets for hcv, according to my hematologist.  Apparently, there is a drug Neumega, that can raise platelets but the doc won't use it . He'll watch the platelets go to 25 - and they probably won't get there.  I don't recall anyone here ever getting Neumega - he said it's pretty rugged stuff.
So there hgb stuff is EPO (stuff Lance Armstrong was accused of using) which is known as brand Procrit and there is also Aranesp (darbpoetin, I think).  SFbay gets Aranesp.

[merlino]

Thanks

[Cindy10]

Just read this article about new rescue drug for platletts, should be available soon.

http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=922

[FlGuy]

Thanks for that link.  I've noticed that med and the clinical trials 'clinicaltrials.gov'.  It will be good to another weapon in the arsenal.

[Cindy10]

I hope so, my hubby starts tx soon and they are worried about his platlets, hope they dont go to low.

[FlGuy]

So you're on tx now and hubby is about to start?  Yours will be an interesting home.  How many weeks will you be overlapping?

[Sally01]

Low blood count can be an easy explaination for shortness of breath and treatable as well.  If you have a cough however or slight fevers do not assume it is only the peg/riba.  See that your doctor knows.  I had an ongoing cough for months with worsening shortness of breath all attributed to a very long peg/riba course.  H&H steady at around 10 and 35.  Turns out I had an opportunistic fungal infection in my lung that of course did not respond to 4 antibiotics.  Just got out of the hospital 2 days ago and have a PICC line with ongoing outpatient IV therapy until the 18th.
   My doctor did not prescribe procrit until hbg at 8.  Insurance company would not allow neupgen until wbc was , 1.5.  Just wanted to let a few of you know that getting these helper injections will probably not be as easy as at short drop in blood count.  Slow down and deal with the fatique.  It will be a way of life for a while.  Just remember not to ignore cough and congestion  Wishing everyone well

[Cindy10]

Yes, about 8 weeks by the time he starts. We are pretty daring huh? It just kind of happened that way. I was laid off with a nice severence pkg, so I decided to start tx and shortly after we found out his had progressed from stage 2 to cirhosis in 2 years and he needs to start soon. We shall see how it goes.
God help us!

[Kalio1]

Wow you have been through the wringer. Yikes, that sounds awful. You give good advice to see the doctor about these things and not assume it's tx sides. I was sick with strep but just thought it was sides, finally I did see the doc about it and found out it wasn't sides.
I hope you can rest and heal, sounds like you are still recovering from it, good luck with it.

take care.

[jetmech]

Please if you are suffering from shortness of breath (sob) have your phys. run a ct scan. I had the same symtoms and my phys.put them off as allergies and when they finally acknowleged something was wrong I was in icu w/ desqualmitive interstitial pnuemonitis.interferon use has a 1% pulminary side effect. do yourself a favor and have it checked out, they waited on me and now I am 100% crippled and dying.