BREATHING

[RALPH44]

I started my treatment March 14th few sides, the last 3 days get really winded I work on the 4th floor take stairs every day 3 and 4 times a day elevators are always broken. This week I cant even make it to the 3rd landing I am so winded and my legs start to hurt my heart feels like it is going to bust out of my chest. Even just sitting here today I am winded and so tired. I am so frustrated because I used to run these stairs. I talked to the be in charge people because had my first bad weekend dizzy, sick, hips hurt so bad. She said she didnt think was the treatment because she said if you have sides they show up rignt away. Is that true? I have always felt quizey and acky and have a low grade fever but not enough to bother me till this last friday.

Thanks for any help

Ralph44

[Rosebud41]

I give you the same advice I give everyone...
Make sure you have an experienced doctor (preferably a hepatologist).

I started with a gastointestinal specialist who really didn't have
the experience to be treating me.

If it turns out that you  have treatment problems you need
someone who knows what they're doing.

It took me a little while to figure out my doctor was the wrong doctor... after he had made a major mistake in starting my treatment when I had some problems that should have been explored before treatment... then pulling the treatment after two weeks when my neutrophils bottomed out...
I started looking at him a little closer then I  went and found what is considered one of the top hepatologist in the area.

Just remember not all doctors are of equal skill or integrity.
Don't be intimidated or fooled.
If you have questions come to this site and ask.
I wish I had known about all the people here before I started treatment itt would have saved me a lot of frustration.

Trust you instincts and don't overlook anything that seems even a little "off key."

Rosebud

[merryBe]

whoever told you that

>>>>>>>>the be in charge people because had my first bad weekend dizzy, sick, hips hurt so bad. She said she didnt think was the treatment because she said if you have sides they show up rignt away.

she is ignorant and untrained at best, I'd either find someone else to talk to in the docs office that is knowledgable, or get a whole new doctor.

you should have new labs done STAT and expect your capacity to carry oxygen to drop...do weekly labs the first 2 months and at least mnthly after that.
Blood levels can crash dangerously at any time during treatment.
I'm really appalled by the answer you were given.
MB

[meki]

If you're super winded - tell your doctor - and YES those are sides that DO happen.

And your platelets and hgb can drop drastically overnight.

So you need to tell the doc your sides.

And sometimes sides are like a merry-go-round -- one day this way--- the next another.

But you can handle it - you're very strong Shelly.

Hugs to you --- -and know that this is a hard treatment for some.

Don't be ashamed to admit it --- you can be tough - but sometimes your body just takes over.

Also - HAPPY BIRTHDAY!!!!!

I'm sorry ya can't have a beer - - but I'm glad you're here to celebrate it at all!

HUGS!!!!

Meki

[RALPH44]

I just dont like the feeling of being week,and I loved to run the stairs (dont want to get stuck in the old elevators either last time it took  them 1 hour to get someone out) Had my blood work done 2 weeks ago the nurse didnt call but we had the masters and every doctors office shuts down when I did call I dont who I was talking to didnt tell me anything .I go for blood test on may 9. Tomorrow is my 45th birthday cant even go and have a beer and get to have a shot on top of that, that just sucks. Thank you all for your help, me and my husband didnt think the in charge nurse was right after all my aunt and sister are nurses and my uncle is a doctor.

God bless you all

Shelly

[Deb_c430]

You need CBCs done,  RBC , low hemo, make you winded,  when it first happened I was freaked!
Your blood cells are made in your large bones,  everything start to hurts because they are trying to keep up with the attack on  your hemo.

It is pretty normal, when treating.

Also had the head ache,  neck ache, mine started early,  about 5 weeks into the 2 day schedules.

I was at first semi predosing infergen( they started me on three days a week, then increased to daily), I have continued  with procrit and neupogen.


It is so hard to feel so weak, especially when your used to being active!

Good luck!

Deb

[charm27]

I was good for the first 4 weeks. I got hit week 7 thru 17 bad. I never experienced nausea, just a MAJOR sore throat at the beginning of tx. Im winded have no breath to do much and my HGB so far has been between 10.6 and 11.2.

My biggest sx is weakness, being out of breath, and the worst riba rage anyone could have. I had itching in the beginning but it subsided. Coughing now pretty bad too.
Week 23 now hair is 35% gone.
Just feel like rubber baby buggy bumpers all the time!! lol

Havent lost a pound.

[Trish77]

And no .. sides don't always show up right away.  That's different for everyone.  I had virtually no side effects in the first two weeks, only some "feather itching" and not a whole lot more.  Then as my hemoglobin dropped, started getting hit with more fatigue that was different from one day to the next.  Week 9 starts tomorrow for me and the fatigue is more on the weekends than it used to be and have had ongoing general nausea for a few weeks now.  However...I'm still holding up pretty good.

Others I know were good until 7 - 9 weeks in and then got slammed.  Others got slammed right away and then evened out...others were hit all the way through.. and others rode it out pretty good all the way through.  There seems to be no particular formula to this.  There are some commonalities.. but no magic one-size-fits-all treatment response.

Good luck with your treatment, Ralph.

Trish

[Trish77]

Hi Ralph, I would be totally winded doing that many flights of stairs too and I'm managing relatively well with the side effects.  I agree with Gauf .. get your hemoglobin checked.  Mine is lower, in the 10.3 - 10.9 range, goes up and down.  If you don't know where you're at, go get checked.  I had a particularly winded day last Friday and got really concerned and went and got it checked and found I'm just fine, at the top of my usual range.  I just needed to rest and spent a good chunk of Saturday in bed.  I was better by Sunday.  However.  I use the escalator at work which bugs me alot to do that and I take the stairs down and take them up sometimes but take it easy.  I walked up the stairs to my apartment after work and I slowed down as I got to the top.  

Never mind what you used to do .. I used to go running before treatment and that's just out of the question now.  Maybe I could ..but considering what stairs do to me in comparison to what running would do, I'm thinking I'm just going to have to suck it up for awhile.  I need my energy so that I can keep working and keep doing those extras outside of work I like to do and keep taking care of life's necessities.

Your priority is to get through treatment...so be kind to yourself during this time...learn to "roll" with your limitations and adapt to what your body needs.  

And go for that blood test and find out where you're at. Stay on top of that. That is REALLY important.

Take care.

Trish

[merry1244]

I also had only flu like symptoms the first 3 weeks and then crashed with my bloodwork, anemia and very low wbc, etc I started using procrit, helps but doesnt really make me feel totally back to normal, I would never be able to walk up 4 flights of stairs right now even with the procrit. I am now into 4 months of tx and finally starting to feel better, so it does get better.My dr does bloodwork every 2 weeks now to check on this stuff. ( by the way I was UND after 11 weeks so maybe its a sign the tx is working)

[gauf]

Time for bloodwork, you sound anemic and procrit might be in order. And it is a normal side effect and no they don't always show up right away.