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It has been a while since i was here last

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Hi it has been a while since i was here last, i was first diagnosed in 2008 with FNHL, did RCHOP, and maintence chemo until Oct 2010, was diagnosed again this past August, and just finished 2 sessions of retuxan, and also an infusion of Zevalin last Tuesday 1-15.I didnt quite make  2 yr remission, so i will be monitored with ;abs etc and i know my cell counts will drop, and im prepared for whats ahead, i refuse to lose! 

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Hi Chris,

 I'm so happy to see your post! I've wondered many times how you were doing. I'm so sorry you relapsed last August, but glad to hear there was treatment still available to fight back with. I hope you do well with the Zevalin.Do you remember Hilde? She's another member here who had Zevalin and if memory serves me right she did good with it. Don't give up hope Chris, you are going to beat this! I hope you keep posting and remember...we are always here to help you through this. Thanks for checking in and you will be in my prayers and positive thoughts! Much love...Sue

(FNHL-2-3a-6/10)

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Hi Sue,

Thank you for replying, today i am kinda feeling a little sluggish, slight nausea, and my appetite has changed, i think of all these different things i would like to eat then the idea disapates(spelling) I am prepared to be inside a lot and away from crowds etc, i live in NY and theres a bad flu epidemic going on,kind of scary.

Going to read a bit while i can concentrate on it, have a good day and take care.

                                                   Chris

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Chris,

I wanted to rewelcome you to the group. You have been through a lot and I'm sure you will get through it this time also! I'm also doing Rituxan minus the Zevalin. In Nov, I was told that I was in remission but still have to finish my last treatments. I'm currently on my third round and my last one will be in Aug. hopefully the last one. Take care and stay strong!

Sincerely,

Liz

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

I had my first set of labs yesterday since my infusion of Zevalin, i can feel the changes that are happening, having pain, some nausea, and weakness, its almost flu like, fevers are coming and going, so far no bruising, which could mean internal bleeding,if that happens and it gets really bad, blood transfusions will be in order, i have been documenting daily in a journal, or every other day,the symptoms and my feelings etc, which i think helps some, soon as i get lab results will post again, so until then..

 

                                                 Chris

illead's picture
illead
Posts: 566
Joined: Aug 2012

We are so sorry Chris.  It's the news we all dread to hear.  We know you will deal as best as possible and that you know you can gain strength from us.  You can vent here and we will listen.  Our hope is that this is just a little detour and soon you will be better.  Our thoughts and prayers are with you.  Bill and Becky

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Well results from labs are in , cell counts are beginning to drop, but not enough to need Nupagin (spelling) injections, all else is within normal limits, i go back in 10 days for another set, still feeling like i have the flu, but it could be worse, so i wont complain,will post again soon.

 

                                        Chris

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Sorry i meant to thank all who have posted here, i greatly appreciate it very much, all the kind words of supposrt really makes a difference, again i thank you allSmile

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Hi Chris,

 I'll be thinking positive thoughts that your counts stabilize and no shots will be needed. So sorry you have the flu like symptoms...it's a bummer to feel lousy all of the time...just rest, drink lots of fluids and hopefully things will improve. Always here for you.

Much love...Sue  (FNHL-2-3a-6/10)

illead's picture
illead
Posts: 566
Joined: Aug 2012

You remain in our thoughts, you are never alone here. Bill and Becky

 

Bill: 64, Dx Mantle Cell Lymphoma, Bendamustine/Rit, now Rit maintence (1more yr.)  In remission one year.

 

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

    Hope this finds you well and hanging in there. I had the Zevalin almost 3yrs ago and just had another followup scan on February 1st and that was clean. So almost a 3 yr remission. Take good care of yourself and you should come through this just fine. If your bloodwork was normal or near normal prior to the Zevalin then it shouldn't take too hard of a hit,at least that's what they told me and it held true. Best of luck and so good to hear from you. Mary

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Hi Mary

Thanks so much for your reply,i had a set of lab work done 2 weeks ago and the cell count had started to drop, i go again Monday to see if its continuing to drop, i have been having pain, sometimes its bad, other times i can tolerate it, makes me antsy, nausea wasnt too bad, appetite has changed, cant eat like i used to, get full fast after several bites, which for me should be a good thing, can stand to lose some weight, as soon as i get results of labs will post i am also hopeing she will want a scan to see if there is any change,again thank you

 

                                                    Chris

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

I worked the last several days and didn't see this until now. Good luck with the labs tomorrow. Like I said I really didn't have too much trouble with the Zevalin and the bloodwork. The counts dropped off for a few weeks or so then recovered and stayed there. Sorry you are having pain. Are they able to help you with that? The only pain I remember having was in my legs. When my blood counts were low it seemed like my legs would hurt and feel weak. Also had pretty bad left hip pain but all that is gone now. Were you in remission when they did the Zevalin? Again good luck and I'll be thinking of you. Mary

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

Thanks for your reply, as to your question, no i relapsed was in remission a little over a yr around 14 months, but i was feeling something wasnt right before i was diagnosed last sept, good to read you are doing well, i get pain a lot on my arms , hands and one leg, and i have been getting headaches too, hope i am able to keep my appt tomorrow, we had a bad snow storm here on long island, got over 2 ft of snow, will find out if my ride will come thru, again thanks for your reply

 

                                                 Chris

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Chris,

I am also from Long Island.  Wha a storm that was.  My mom was diagnosed with Intravascular Lymphoma and is being treated at Stony Brook Cancer.  My mom is 82 years old and although she as healthy before her diagnosis, she became very sick quick.  Instead of using R-CHOP they used R-CVP.  It did not work well for her so now they are using Bendimustine/Rixtuan.  It seems to be working better.  Where are you being treated? I hope you are feeling better.  Emily

 

Chris17's picture
Chris17
Posts: 120
Joined: Oct 2010

I go to woodbury office of Queens long island medical goup, really friendly people there, i wish the best for your mom, i had RCHOP and i barely remember 2008 when i had my first treatment, i relapsed this past Sept, and i had Zevalin and rituxan, saw the doc today my platelet counts have dropped to 38,000 doc said if it goes below 20,000 i will need a transfusion, o have been dealing with follicular non hodgkins lymphoma since april 2008, my remission was 14 months at the most. The zevalin i was given is to extend my remission, hopefully it will work if not then i have to do stem cell transplant, all the best to you and your mom, take care and be safe outside.

 

                             Chris

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Chris,

I wish you all the best with your treatment.  I will pray for you.  The roads are very bad today.  Could not get my mom to Stony Brook for her shot.  Will try again tomorrow.  Feel better Chris.

 

Hugs

Emily

 

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Hi Chris.  I meant to respond to you sooner.  I just wanted to welcome you back to the group and offer you supportive and positive throughts.   I hope the zevalin does the job for you.  Just know we are here for you.

Big hugs,

Jim

TooBlessed
Posts: 2
Joined: Apr 2013

Have you had a scan since your Zevalin treatment?  I had Zevalin 2/27/13 and will have my PET/CT on 6/14/13.  Have your blood counts gone back to normal?  I hope you are doing well.

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