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Hello to all

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Just a quick post to say I am wishing all of you the very best and trying to keep up with everyone's journeys. I am in the middle of a long stretch of working and haven't had much time to post but thoughts and prayers are with you. Mary (FNHL-1-4A-8/08)..For you Miss Maggie.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Mary,
You are always so sweet and helpful! Tuesday is my 3rd chemo treatment, and I'm not near as nervous or anxious about it as the first two times. I remember you, Vinny and John saying it "will" get easier and you were all correct. Don't work too hard!
Love...Sue (FNHL-2-3A-6/10)

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Wow #3 ...nearly halfway(most likely). That is great and it does get easier in a lot of ways. Batten down the hatches for 5 and 6 tough. I had mostly increased fatigue. My blood work took the biggest hit in the middle and pretty much never dropped lower then that. So keep your fingers crossed. The flu season can be challenging but turned out OK for me. I was mostly scared, had a couple of colds but no flu. I did have the flu shot and plan to get it this year. Sounds like your Husband is good to go. Good luck on Tuesday. I work this evening so probably won't be back until tomorrow AM. Mary (FNHL-1-4A-8/08)!! MY name,rank and serial# lol

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
Well tomorrow is your big day. It will go smooth for you. You know what is coming and you know the benedryl will tire you out in the evening,so all that is expected. Rounds 2 and 3 went smooth for me and I did not really feel all that tired. Round 4 was pretty good as well, but did seem to hit me a little harder. Rounds 5 and 6 knocked the crap out of me though. I was never short of breath or ever felt sick, just felt like I was wore out all the time. I keep a chart of my blood work and I did notice my wbc's stayed up pretty good,but did drop a little (I guess that shot helped) My rbc's took a big hit and dropped to near anemic levels between 4 and 5. The midway mark is coming so be on the look out for those symtoms. You may get lucky and breeze thru 4,5 and 6. I hope so. John
FNHL-1-4A-5-10

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John,
Thanks for all the info..it is always helpful and gives me a heads up of what "might" take place. Fear of the un-known is getting easier and easier with the back-up support from all of you sharing how you re-acted during and after each round. "HUGE" help in easing my mind! Steve's little flu bug was a scare, but since everything turned out good, I won't be near as worried next time something like this happens. The trick is to just use common sense...sanitize..and not panic...ha! About the benedryl...last round for some reason it gave me restless leg syndrome while getting my infusion. My chemo nurse said that this round she would cut it back a little bit, but said if I had any kind of a re-action she would have to increase the dose. Apparantly benedryl can cause restless leg, but it didn't do it to me the first time, so I thought it was weird that it happened on the second round. The restless legs goes away as soon as the benedryl wears off, so it's really not a big deal.Maybe this time it won't happen. I'll check in tomorrow night and share how everything went. Have a great Monday...Sue..(FNHL-2-3A-6/10)( I think adding our dx at the end like this is a great idea!)Glad Maggie brought this to our attention!

yesyes2
Posts: 592
Joined: Jul 2009

Hi Sue,

I also get restless leg from the Benedryl and used to walk the halls of the hospital as I just couldn't lay still. I had my onc prescribe atavan which did help but made me way too tired for 2 days afterwards. I was already taking a lowered dose on the benedryl so my onc recommended I just not get it at all. He said he had several patients who didn't take the benedryl, the nurses weren't in favor of this though. You'll do just fine which ever way you go.

I'll be thinking of you tomorrow.
Leslie

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John and Leslie,
Good to know someone else got the restless leg deal with the benedryl...Thanks for shring your experience with it Leslie....much appreciated!

John...I also get real drowsy shortly after they give me the benedryl and stay drowsy all throughout the infusion. I don't even take my book anymore to read because I'm nodding off more than I'm awake. It doesn't last as long for me as it does you. Usually by late evening(8 or 9) it has worn off and then the nasty old "pred" steps in and it's "off to the races"...UGH! Thats ok though...I'm used to the routine and have figured out how to deal with it...however..no more baking at 2:00 in the morning...ha!..
Sue...(FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
The only thing I had happen from the benedryl was the tiredness. It actually starts about 15 mins after I get it thru the infusion. I find myself nodding off all thru the treatment. It works quick since it is injected right into the feedline that way. I am a little drousy the rest of the night and even the next morning I feel the effects of it. Wears off by mid day though. Even though I get drousy the treatment time doesn't seem any shorter. You would think it would but it doesn't for me. I go for my pet scan on Wednesday,but will not know anything until Friday when I see the Onc. Dr. Yea, I really like the dx at the end of the posting. Having chemo brain I draw a lot of blanks when I go and try to remember something. Take care and good luck tomorrow. You will breeze thru it. John
(fnhl-1-4a-5/10)

yesyes2
Posts: 592
Joined: Jul 2009

Hey Sue and John,

If you request the Benedryl in pill form it makes you far less sleepy. The pill form needs to be absorbed thru your stomach so you don't get the jolt from directly into your IV line. Works just as well but easier to tolerate. Just a little heads up. Youor infusion center may not have both but my hospital where I've always done my chemos does.

Hope this helps,
Leslie

John, Good wishes for a clean Pet scan on Wednesday. To remission.......!
Leslie

yesyes2
Posts: 592
Joined: Jul 2009

And Vinny, you too.............hoping for a clean PET and the wonderful words complete remission. So very glad your fever has broken.

Praying for the very best,
Leslie

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Leslie,
Thank You. I have my fingers crossed. I will ask about the benedryl in pill form. They give me 2 tylenol in pill form as well. John
FNHL-1-4A- 5-10

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hey work comes first Mary!!!! Thanks for the post Vinny

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

Any better? I have read that it's still pretty rough for you and hope you turn the corner very soon. Hang in there!! It is all about work right now. Am on a long stretch of 7 out of 8 days but am happy to be able to be back working. Not too long ago I never thought it would happen. What's up next for you? Mary

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

It has been a rough month to say the least. My fever of 8 days has finally broke, but I'm still having a horrible cough and night sweats. Is it a viral infection, our more cancer symptoms, I guess I will find out when I get my PET Scan this Wednesday. I'm kind of concerned how pressed my Onc. is to get this scan done, she scheduled this 3 weeks after my last Chemo, not the four she first committed to. To much to read into, I will find out soon enough! Thanks again Vinny

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

My onc has me take 2 tylenol and 2 benedryl about an hour before my treatments so I take the pill form of benedryl. Much cheaper too. The first time I saw the bill where I was charged 20.00 for 2 benedryl and 20.00 for 2 tylenol I take the meds myself.

Will your center let you take your own premeds? Seems like there is such a tremendous difference in my oncs office versus a large center.

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

My insurance pays everything right now. God only knows what will happen after this GREAT OBAMA health care takes effect. I don't want to get political here, but everybody is going to be affected by it in a negative way. They are already starting by denying a cost of living raise to the social security people. Don't want to get on my soapbox or offend anybody,but it is something to think about. I could be wrong,but I don't think so. John
fnhl-1-4a-5/10

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Beth,
I have to take my 3 pills of pred(60mg) an hour before treatment while still at home. Then the chemo nurse gives me 2 tylenol and the benedryl 1/2 hour before starting the drip. My insurance also covers everything except for my $25.00 monthly co-pay which I pay on the first of each month. I haven't received a bill in the mail for the last month and a half. My motto is...no bill in the mailbox...nothing owed...ha! I'll poop my pants when I get hit with a big old bill, won't I?...ha! I'll ask my chemo nurse about the pill form of benedryl, but I kind of like the drowsy nodding off during treatment..makes the day go faster. Thanks for sharing the info.
Love...Sue (FNHL-2-3A-6/10)

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