Feeling kind of weird..

Hi there:) I am 4 days into SOC and I am feeling a bit strange...not bad..just different. I thought this would be the best place to share how I'm feeling. I haven't been sleeping very well since I started tx..maybe that has something to do with it.Anyway, it's great to have this forum to share what's going on....Thanx for being here:)

[Livinontheedge]

Hi SnipC and welcome to the forum.      First of all congrats for being a brave warrior and starting treatment.    We are all here fighting for the same thing, so just feel comforted to know this is the place to come for answers and questions.   And remember you will never feel out of place.
4 days into SOC, and feeling strange is not something we havent experienced.   Just remember it hits everyone differently.   Are you taking any AD or Anxiety meds ?         You could feel alot of different emotions and have side effects from the chemo so , just stay in tune with the group and ask questions when you do.   Read the information on your Drugs too as you will see a large list of different SX.      Hang tough !      Carrie

[orphanedhawk]

Hi,
I'm just over two weeks into SOC, a second time for me.
At first I had trouble sleeping. My nurse suggested I do my second dose of riba earlier since it's a stimulant. I've been sleeping great since.

And sure, you're feeling strange, you have meds in your body that weren't there before.
I try to keep my mind focused on good thoughts.
Good luck,
OH

[SnipC]

:)

[flcyclist]

Your body is being bombarded by some very strong medications and it is attempting to make adjustments.  I try not to take long naps during the day, since I may not be tired when bedtime rolls around.  As mentioned above, don't take the Riba too late in the day.  Drink plenty of water to offset the sides.  

Also, many experience mood swings, from overly sappy to rage.  Each person handles trt differently, so just take things one day at a time, and the weeks will begin to click on by.  The hardest part of this journey is beginning.  Hope it is a smooth one for you.

[SnipC]

Thanx:)

[starshine1ca]

I too am having trouble sleeping...I usually wake up every night at  2:30am and cannot sleep til after 5am...so I am pretty tired during the day.  I started on Tuesday last week.  Are you on the new treatment?  I also changed the time I was taking my Riba as flcyclist recommended and I slept right  through last night for the first time in a 5 days! Yahhh!  

[SnipC]

I am on standard treatment. I live in Canada and am not able to get the new medication covered. I am on disability. What time are you taking your Riba? I am not sleeping very well..maybe a time adjustment would help me out too. I am really glad you got some sleep:)

[willbb]

Hi there...You say you are in Canada and can not get the new meds covered. I am also in Canada and was wondering what province you are in?
If your are geno type 1 ,there are different ways your doctor and yourself can apply to different provincial agencies for coverage  and failing that the drug companies themselves have assistance programs for some people.

How far into treatment are you? If I can be of any help ,either respond here or if you like send me a PM and I can possibly help with some contacts.
Best...
Will

[orleans]

wow, there is somethng to be said for a private system, it's just really expensive. I was prepared to pull out my credit card when I thought BCBS was going to balk at paying for my Alinia, as it was off label use. My Dr got in a huff saying that HE was the Dr and all he had to have was a reasonable case that this drug could help. He submitted the request and they agreed with out a fuss. Alinia's cost was $1100 additional PER month. (this was pre-new-meds) I have a crappy policy though with $1000 dedudtable on drugs + a $45 co pay for each drug per month. Over 9 months it added up. Often the drug companies will help out depending on your personal $$$ situation. Down here anyway. Call them, can't hurt. If you relaspe it will cost your system much more. Seems like they would do the math. jm

[starshine1ca]

Hi SnipC,

I take my ribavirin at 7:00pm but once again last night...I woke up at 2:30am again and surfed for a couple of hours before I was tired enough to lay back down....what time do you take yours?  

I am also on disability and in Canada...Ontario and my doctor's requested that the drug companies provide me with the treatment as compassionate use and thank goodness they did!  I applied to the govt back in March and they still have not given me an answer.  Hopefully Will can give you some answers on getting the new drugs...and perhaps your doctor can request them from the drug company directly like mine did.  Keeping you in my prayers.  

Sincerely, Starshine

[cieritaqt]

Welcome! What does SOC stand for? I am on week 5 of TX, Interfuron, Ribavirin, and Boceprevir. I too have probelms sleeping, i try not to take the Ribavirin past 6:30 pm. i take one tylenol PM if needed, I don't even need 2, it really helps. I also have anxiety, but it comes and goes. I try to walk or do other activities and it helps. drink plenty of water, that helps me too. You can do this! We all can, hope I can be here to help.

[mykids247]

I just started my 3rd week of soc and the first reaction I had was last night. On my way home from work started to feel feverish, eyes burning you know the drill, well after my 45 drive by the time I got home I was in full blown fever, chills, sweat,headache oh ya. Took the day off today and feel pretty good. Not complaining at all, lots of people have it a whole lot worse. Thank god every day!!!!!!!!!!!!!!!

[ptz]

Week 16 here of triple therapy with boceprevir. The side effects have been a roller coaster. Home from work today for only the second since starting treatment..I think it is because of the large dosages of procrit and nuprigin yesterday. The anemia and neutropenia took a real dive last week.  Hanging in. My doctor has mentioned temporary disability several times and for the first  time I'm considering it. The brain fog is definitely effecting my job performance. Good luck to all of you.

[starshine1ca]

When I was considering working and doing treatment the last time I did, I asked my boss his opinion, since he had done so the year before.  And he said, "If ever I do treatment again, I would not choose to work for it was not fair to my family, my work and myself."   Makes alot of sense...plus it takes away stress which is the last thing you need.  Just wanted to share that.

Sincerely, Starshine