Good News

[ladybug52]

Not good as in good for everyone, or I got a UND heptimax, but good for me and it's all about me!
I no longer have invisible itchies! I woke up at 4 this morning from itching and when I looked at my skin, I was covered with hives. Yay! Hives respond to anti-itch cream! I've been up for an hour and the cream worked, no itching no hives.
Bug

[rosebud57]

i feel headachey even now and it has been a week since i became ill. they didn't give me z-pack wish they did. they gave me a 10 day something  kflex or something on friday evening.  last night i had a hard night with muscle twitching again i wonder if it is from taking the restoril - i was only taking about 2 nights a week didn't need it the night of injection. usually several days after so Thurs, Friday, maybe Sat. can't remember. but last night was Wednesday and i got these wierd twitches. felt like detox. am i rambling??

so that explains why i was confused about the heptimax i think...or why i said little about the headbands..i remember the post. do i have to go back the the hair post?  i think. i was really in a panic about the hair loss last week.  i am loosing a lot. but i really think my response to it was compounded by reactions to the treatment drugs. i'm okay, and could afford to lose a little more yet. send me email or a link about the headbands.

the hives... hmmm. is that better than wierd unexplainable itchies???  should i retract my congratualtions all together. or say CONGRATULATIONS  for the hives?  that might explain what has happened to all the honeybees - maybe they are also a fall out of the florida votes.

[rosebud57]

i haven't talked to you in a while it seems.  i was not feeling well all last week. interferon/riba and antibiotics not a good mix.

little bug  `CONGRATUALTIONS!!!!.. regarding your hepimax results. may you forever be svr...
now we wait for my results, i had blood drawn today. took my last injection 4-10 i say no more.
rose

[ladybug52]

thanks for the kind words, but I'm so misunderstood. I haven't had a recent heptimax since week 15! I was saying good news cause I can treat hives,( or so I thought) NOT good news as in und pcr. Obviously hive tx is not working  either , just one lucky night!
Did you ever respond to my multiple headband  questions? So did the antibiotics help? Those z-packs are pretty strong!
Hugs,
Bug

[cajunlady]

Hi There,

Hope things are going well for you, keep the chin up.  Things get real rough sometimes in tx, but just about the time you think you cannot go any further, you get a few goods days and you say well maybe I can keep going, yeah this is doable.

I will try and explain this as best I can, this should help.
You know how in a resturant there are individual packs of ketchup, mayo, mustard etc. And Ice Cream in little individual containers with the little wooden spoons.  If he is the first to eat from a larger container of ice cream, it's okay, but he cannot go back to that same container later.  Bacteria and Germs set in.  I cannot pack food in small containers, his food cannot be handled before he opens things to eat. I don't know if that made better since for you.  Thanks for the thought of the containers though.  I am going to start cleaning my kitchen.  Take everything out and clean the shelves, throw away anything expired etc. so that I can only have what is needed and everything can be clean for when he returns later from stem cell.  Things need to be extra clean for about a month after he returns from Stem Cell and bacteria free diet for about a month after also.

I think I will call his doctor today though, his mood is really down this time around.  I want the nurse's to observe him when I am not at the hospital.  I want them to put him on AD's if necessary.  Attitude is everything for success and recovery and right now I see him more down and out than normal.  Of course he also knows there is no stopping now, things continue on this time until he is through with Stem Cell.  Hell if it were me I would be scared out of my mind. But, I can not let him get in to deep of a funk, you know.

Was a relief when I got the kids report cards home, they are both making the grade and my youngest higher than I thought, so it is nice to know I don't have that worry on my plate right now.  Lifts alot of burden.

Well I leave work in an hour, must do some work before I leave.

Have a great day,

Cajun

[ladybug52]

Sorry if I misled you, I haven't had a recent pcr since week 15 and I stopped at 16. I guess I meant this is good news, but NOT a und heptiamx and people thought I meant I did have that recently. But thanks for the kind thoughts all!
Bug

[ladybug52]

I have heard of isloation diets, in nursing homes, they have to eat on disposable plates and the containers are thrown away in their room, in a trash container. I guess I'm thinking of reverse isolation where they are protecting others from the sick person." I'm confused by this statement.
"He cannot put his own food/drink away and go back to it later, has to be thrown. Nothing in plastic or carton containers, only glass and can."
He has to throw away what he doesn't eat,and can't eat from plastic or carton containers? He can only eat off glass and drink from cans and then throw it away? I apologize for not getting what you mean, my brain is in slow-mo. Yes food containers are expensive, do you mean the kind that are styrofaom and used for take-out. I know I ask so many questions but I'm so nosy! Plus I worry about your family dealing with all this. I'm already thinking 'Who do I know that has a large supply of food containers" (we have a lot of chefs and caterers in my family,) but I don't even know what he uses!
Keep me posted, I have no relatives with gas oils to help in that area!
Bug

[ladybug52]

All votes have been cast and counted  and the official results are in. The envelope please.......................................................And the winner is:
SNOWBYRD for her original  idea of 2 birds and a bug! This is so exciting, especially for me and pigeonca.Snow, do you want to have the party at your home in Canada, or would you rather  we just go on your sun, surf and beach vacation with you and hubby? I'm not particular, how about you pigeon?
The heppers angels was a nice idea, but don't we have to have one blond, one brunette, and one redhead? I'm the brunette (with the graying thin hair)  I just read Myown is thinking of stopping early, at 20 weeks, she's a redhead. But too late now, the official count is in 3 votes here and an unexplained 537 votes in Fla. (very subtle political humor there)
Snow, you'll be fine I think, Pigeon, I work but I don't exercise. Bought a pedometer to monitor steps. Worked 12 hours today so I must be feeling better, or it hasn't hit me yet. You know how sometimes you feel good and the next day feels like you got hit by a truck?
Bug
Let us know the dates  for the party/ vacation so we can start planning! Good thing pigeon and I are getting our energy back, you won't have to wait on us hand and foot too much!

[pigeonca]

I vote for 2 Birds and a Bug.  Sounds like a 1940s singing group as done by Disney.

[cajunlady]

Hi There,

Yes, I did get on meds, doctor put me on Lexapro.  What a difference that pill makes, and I have no sides with them. Yeah!!! So far no andi-d's for the hubby.  He is a little stubborn sometimes.  But, it is the fight for his life and I am not going to push unless things get really bad.  His fight right now, his choice, but I do know the signs to look for if I think its time.

I admitted him into the local hospital for round three of his chemo, to shrink the tumor that still has measurement. He will also have to start a non bacteria diet for isolation and I will try and keep that going for at least a month when he is at home. The guide line is not that harsh, the main thing is he has to have individual containers. He cannot put his own food/drink away and go back to it later, has to be thrown. Nothing in plastic or carton containers, only glass and can. We will start practicing this diet once he comes home in about 5 days.   I thought I had sticker shock at the gas pumps, but individual food containers are going to be a shock too.  It can be expensive to eat healthy too, but worth it, well worth it.

Brave, I am not at times, you just get to a point that it is what it is and there is nothing you can do about it.  So, I just try and live in the moment and when I make it through another day I count my blessings and say a few prayers of thanks.
Hope you are doing well today.  You do have alot of spunk.

Cajun

[snowbyrd]

Or we could just be 2 birds and a bug.

[snowbyrd]

I kinda like the 3 blind mice, cause we cant see whats going to come, ok maybe not, didn't one of them get their tail cut of by the butchers wife or something like that?  How about "The hepper Angels" Kinda like charlies angels,? Even when we all SVR we can still be Angels on the board to help fight the virus and encourage others.  Anita

[ladybug52]

Ha, I'll look pickled alright!
Name, vote please?
Bug

[pigeonca]

You look young too!  Maybe interferon will pickle us so we can stay looking young.

[ladybug52]

Ok what shall we call ourselves? Three musketeers, three blind mice?
Three Stooges? The one to come up with the winning name,(based on our 3 votes) gets to host a party for the other two!
Pigeon, had no idea you were 60! You look so young!
bug

[snowbyrd]

Good to hear from you....now i remember you, Glad to hear you are able to exercise. I did shot 15 today, one more to go. I get nervous about doing the short course but i know my body can not take anymore. I'm 45 years old and have lost 20 pounds and i lost mostly mucsle also. I have not been able to work and i can't wait to get this stuff out of my system. I hope everything goes well for you with your bloodwork and I'm sure you will still be UND.... hang in there and keep in touch.  Anita

[ladybug52]

My, my my! I'm speechless. We all complain about our tx and he is fighting for his life. Can't understand 1/2 of all those meds but it does sound like you'reinformed and in for a roller coaster ride. How's he feeling about tx lately. Did he get on A/d's, I can't remember. You did tho, right? I am really so overwhelmed reading about this and yet you continue to go to work, keep up with all the medical stuff and take care of your family. You need to give me lessons on how to be strong.
Hugs and prayers,
Bug

[pigeonca]

Hi guys, I am the third woman who is doing shortened tx for geno 2.  Last shot was March 21, so basically the past 3 weeks have been interferon-free.  The riba is still in my system, I'm told for up to 6 months, and although I can feel its influence, I'm way better already.  

OTOH, I'm still not ready to resume working.  I'm good for 2-3 hours, and then I need to sleep and/or otherwise rest for an hour.  Then I can do another 2-3 hours, followed by rest.  My skin is less red, less itchy, but not out of the woods yet.  

I figure my main job right now is exercising in order to regain the muscle I lost.  Maybe because I'm in my sixties (I still cannot believe that - I'm the sort of person who has resisted joining AARP or shopping at Chico's because I'm just not old enough), I seem to have wasted away during a mere 3 months of tx.  About a year ago, I had my body fat analyzed.  I remember that 98 lbs of me were lean tissue (muscle, skin and bones), and the rest was fat.  So last week I did it again and learned that after losing 14 lbs. on tx, my lean tissue was down to 93 lbs.  So I've lost 5 lbs of muscle, and believe me, I feel it.  Hence the gym.

Thursday I go to the lab for a blood draw, and will see doctor for results on May 1st.  Pins and needles time.  Hope you're all doing better than me.

[goldyn]

BIG CONGRATULATIONS ON THE UNDE...AND MANY MANY MORE.......

[painterlady13]

Yea! on getting rid of the itchy's and an even bigger YEA!!!!!!!! on the UND.  

[Tallahassee]

Congratulations on UND!!!!!!!!!!!!!!!!!!!!!!!!!!

[Forseegood]

I had hives and I was told to go to the ER, but of course I wasn't on treatment, glad they are clearing up for you! Mine went away with some Benadryl...

[cajunlady]

I am sooooooo glad to hear you have been able to get rid of the itches.  That stuff can drive you just crazy.  How are you other than tx.  You sound okay now that the itch is gone.  How may more weeks do you have on tx.

Update on my husband, He goes back into the hospital, locally here and starts a 3 treatment of ESHAP chemo, 5 days of 24 hour chemo (two kinds), then on the day he leaves they will give him 780mcg of Neupogen and he will continue with 780mcg of Neupogen for 10 days (2 shots a day/totaling 780mcg). About May 1st he goes to UCLA to start harvesting his stem cells every day for about 7 days.  He takes a day of rest and then goes in on that Wednesday for CVC placement, (port).  Five days later he is admitted into UCLA for transplant. He will have 6 days of (BEAM) 4 different kinds of chemo, a day of rest then they will infuse his stem cell back into him.  They expect the counts to start dropping 2 days after the stem cell is put back into him. Then he will go into Protective Isolation.  From this point it is possible for him to have 4-5 units of blood.  After being in Isolation for about 3 weeks he will probably be able to come home.

What a long haul he has.  The doctor also told him that if it returns after this he will not ever be able to get rid of it.  Yes, it can be treated again, but your body can only handle so many chemo's, so it would not be a good thing. YIKES!!!!

So, we have buckled up for this ride and holding on tight for the success of this Stem Cell Transfusion.
Well talk to you later, almost time for me to leave work, will check back in later this afternoon/evening.

Cajun

[rosebud57]

so glad you found relief. hope that you continue on the path of recovery.  how is te energy level feel any increase yet?  have you had time or inclination to increase your exercise level in some way.
rose

wyntre i cant imagine what it would be like to move from a house sitation to what sounds like a small one bedroom or even a studio. it is heartbreaking. to have to anything that required engergy when we are not well.  go will get through it. little at a time.

rose

[wyntre9]

Glad to hear you've gotten some itch relief.

thanks for the comments on the other thread.

I'm going to be even nore erratic with posting the next few weeks.

Have a contract on my house - packing up 13 years worth of stuff - moving july 1 from 2000 sf to 500 sf -

Man, is this nuts . . .

TG I have 2 and a half months to pack - with my low energy and endurance i can barely manage more than an hour or two per day . . .

wyntre