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Friday hello

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi All,

I just wanted to say that I am thinking about you all. I hope that everyone is feeling okay. Have a lovely fall weekend.

Lisha

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Great to hear from you!

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

Hi Lisha,
Thanks, sweet friend...it's always nice to be thought about! Spent the day getting summer clothes put away and winter clothes sorted through..."Whew"!!...glad thats done! Going up and down the stairs working bewtween 2 closets sure took it's toll on me. Dang energy just isn't what it use to be. Anyways...you have a "great" fall weekend my friend, and know you are also being thought about! xoxox..Sue (FNHL-2-3A-6/10)

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

Lisha,
I don't post a lot anymore but I read the post everyday. Hope you are doing fine. Think about you a lot. I had my 3 of 4 R infusion today and it all went well. Just wore out from the benedryl. John

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Wish you would post more :). I do appreciate your point of view on things.
Hopefully the benedryl wears off soon. I think I may finally be coming down
from the prednisone - just about in time for the neulasta to kick in.
But, thank goodness, it's the last of each I hope for a very long time.

I look forward to having some energy to get some much needed things done
around here. Of course, the holidays are about to hit and the craziness
with that.

Hope you're doing well.

Jim

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

I used to post all the time and at times I got a little wild with my point of view. I was feeling really comfortable with all the people so I posted what I felt and tried to offer support at the same time. There was one on here that was constantly reporting me as offensive. It took a while to narrow it down to who it was.It really ticked me off at first,but after thinking I felt it was their right if they felt it was offensive.I only posted what I felt and sometimes that post got reported as offensive. It was removed and I was starting to feel like Big Brother was way out of line. Like I was saying I do read the post everyday. I haven't gone anywhere.I see a lot of post from some new people that I would like to support and tell my feelings.Its hard for me to do one and not the other. Just saying part of what I am feeling leaves me thinking like I can not express what I am trying to get across. I could start talking about cures and that would lead to another expression that if I post would be reported as offensive. The last post that was pulled was a couple of months ago and I could not even get on the site for a few days. A lot of people never give cancer a second thought till it hits home. Then they start to research more than ever and come across some facts. They start to put 2 plus 2 together about treatment vs. cure. Better stop or this will be pulled as well. Thanks for replying and keep posting.You have a great sense of humor. John

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

Hi John,
I remember how hurtful the situation was for you when your posts were being removed. Pi$$ed me off royaly! I just want you to know that the support you give is needed and very much appreciated. You were the first person to respond when I joined this group back in July of 2010. You and others got me through a very scary period during my early days after diagnosis. I totally understand your feelings about being hesitant to post, because certain people may start the "silly flagging" game again. With so many new folks coming to the group, your insight and support is still needed and will once again be appreciated. Maybe our resident flagger has seen the light and has learned some tolerance. I for one would very much miss not seeing your comments and words of support here at CSN. Keep posting my friend...you are needed. Glad to hear your R infusion went well...kind of a bummer we have to keep doing these infusions for 2 years, but....if it keeps us stable, then we do what we must..like it or not. My next R is on Oct 25th..UGH!..ha! Sue
(FNHL-2-3a-6/10)

jnyb2020
Posts: 10
Joined: Oct 2011

As an old timer, new to this site, first, I hope your treatment went well yesterday!!
I read the previous John's post, and I can see his frustration. I can also see how some expressions can be misconstrued as "offensive"! But what the flagger needs to understand, is that this is an ordeal that makes people angry, frustrated, emotional, to extremes!
I thought this was somewhere where one could tell and talk to others who may be feeling the same way. Sometimes, just knowing that you are not alone, at particular times, is a tremendous support. And some feelings should not be sugar coated. If that is the rule, why bother?
I am sure that if I told some stories of what went on during my treatments in 1983-84, I know I would be flagged!, But I won't just because of my concern for others who are there now, and I would like to be more like Jim, with a more upbeat tone.
I really believe that if this CSN was around in my time, it would have helped when I really needed it! Or if I had known about it, it may have helped my wife and I during her recent ordeal!
But I am passing the word! I have met and know some survivors who may not be aware of this, and the benefits it and they may provide.
I am so behind the curve when I read about treatments, so I have some research to do. I am sure my "CHOP" has changed too. (It was called "antique" back then!) (but I am still here! ;-) )So, again, Sue, I may not know what your treatment is, yet, but I hope it went, and keeps going well!!
John

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

Hi John,
My treatment went very well yesterday. I go in every 2 months and get my Rituxan maint infusion...(2 year maint..had my 5th many to come). It is designed to target any cancer hanging out in the body. It's suppose to keep me stable/remission...I didn't quite reach the remission stage after finishing my chemo, but very close. Still have one pesky tumor under my colar bone, but so far it hasn't changed in size which means the Rituxan is keeping it in check. I was super tired yesterday because they put the Rituxan in faster than usual and increased the benedryl. Got home and slept most of the afternoon and evening and then slept all night. I feel good today except for my shoulders feeling achey which might be from sleeping so long. Guess we just take the good with the bad...ha! Thanks for asking and welcome to our wonderful group. Hope everything is going ok with your wife(recent ordeal), and I will keep you both in my prayers. Best wishes...Sue
(Follicular NHL-stage3-typeA-grade2-diagnosed 6/10-age 61)

catwink22's picture
catwink22
Posts: 281
Joined: Sep 2009

Hi Sue!
I'm happy the Rituxan is keeping you in check, I start my last round of Rituxan maintenance on Tues the 1st, once a week until the 22nd and hopefully that is it (two years goes by quick)! I still have one tiny spot under my arm that is being stubborn and won't go away, but I'm thinking maybe it's a good marker to watch if anything were to start again. I'm curious if you know why they increased your Benedryl and ran the Rituxan faster? I start at a slower drip and am increased gradually over the 4 hours. Does running it faster make it work better? Hope you are feeling better soon!
Take Care!
Cat

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

Hi Cat,
I don't know exactly why they gave it to me faster this time. They started the Rituxan at 10:30 and the next thing I knew they were waking me up at 12:30 saying I was all done. It usually takes 4 hours. I asked the chemo nurse why it went so fast and she said my doctor had written the order on the script and also wrote to up my benedryl by 25mg. She said it's not uncommon to do it faster when a patient hasn't had any problems with prior infusions. She said they monitored me very closely while I slept and I didn't have any problems. I was too groggy and tired to discuss it in detail, but plan to ask my doctor about his decision to speed it up when I go back on Dec 20th for my next dose. Knocked my socks off for the rest of the day and all evening, but I felt just fine today and even babysat my 6 month old grand baby Lizzy from 7 this morning until 5 this evening. Still feel pretty good tonight. You would think "SOMEONE" should have told me about the change, but I guess they figured I would be ok. Anyways...alls well that ends well! Love...Sue
(FNHL-2-3A-6/10)

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Sue,
Hope your feeling better today! You're such an inspiration to me! Whenever I read any of your posts, I just feel all warm and fuzzy inside,lol...seriously! I really think you're a wonderful person. I get a lot of strength from your words of wisdom. Thank you Sue for existing...take care of yourself.

Sincerely,
Liz

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

Hi Liz,
Thank you Liz..thats so sweet of you to say. I know how scared I was a year ago, so now it's my turn to pay it forward for those just starting their cancer journey. I love this wonderful group and plan to stay with it for many many years to come. We will all exist and thrive together. You take care of yourself also. Much love...Sue
(FNHL-2-3A-6/10)

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