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Last Rituxan Maintenance

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Yesterday, I had my last of 2 years worth of Rituxan maintenance infusions. Things got dicey at the end. The bag was almost empty when I suddenly became dizzy, nauseous, and broke into a cold sweat. I threw off my blanket and ripped off my sweater. I was trying to wait to be disconnected from my pump so I could go to the bathroom. I starting eyeing the trash can! I knew I was about to be sick. Finally, I unplugged the pump and staggered to the bathroom, dragging the "pole" with me, only to find it occupied. I sat in a nearby chair, sweated and took deep breaths. Then the pump started beeping. The nurse came; I told her I was sick so she went ahead and disconnedted me as the previous occupant of the bathroom came out. Nurse said, we'll de-access your port later, go.

I was violently ill (both). I thought I was going to faint. My neck and shoulders were aching and I was having heart palpitations. I thought I was having a heart attack. After I finished being sick, I washed my face in cold water and applied cold towels to the back of my neck. I made it back to my chair; the nurse took my blood pressure which was 90/51. Very low. (At the beginning of the appointment, before I saw the doctor, my BP was 128/86). 

Once this episode was over and my blood pressure returned to my normal range of 115/67, I went home. But I didn't want any dinner. And today, I still feel a little queasy. I think perhaps this is my body's way of saying, ENOUGH. 

In 2 months, I will have a CT scan and 2 days after that, I will see the doctor again. I was disappointed and discouraged when he told me he wanted to leave my port in for another year. In fact, I thought the whole appointment was a downer. 

I thought I would feel celebratory after completing all my treatments, but I feel very unsettled. 

Thank you for listening. . .

Rocquie

 

 

JoaniePP's picture
JoaniePP
Posts: 10
Joined: Feb 2015

So sorry to hear about your episode. I was diagnosed 6 years about and had the same treatment except 6 rounds of Chop.  Time will make you feel more and more secure.  I loved your post and prayer is the key.  I don't dwell on the bad just the positive.  I started a cancer support group and there is so much hope for you.  I have been in remission since June 2, 2009.  I pray that you will continue to be in remission. 

NANCYL1
Posts: 289
Joined: Jun 2012

Rocquie:

What a terrible experience!  Sure was a "downer."

My first appointment in 2012 was "bad news."  Had very bad reaction.  After that the doc. added steroids to the Rituxan mix  and I was OK.  Had Rituxan for two years and now am "stablized"  (my word), and see the doctor in six month.

I hope you are now feeling better.

 

Nancy

 

 

 

 

 

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I'm so proud of you. You made it through and now it is time to think positive thoughts!!!!!!!!! You did it!! I was really sick on my last infusion. But every day after that I felt better and lived my life to take advantage of the good days!!! Find the peace beyond all understanding...in the Lord. 

Jeff

Anonymous user (not verified)

i must admit that after I finished R in April it gave me an uneasy feeling to know I had nothing inside me fighting the cancer. Try not to dwell on it. You are a strong person and it shows. On the bright side I feel much better now hat I am off R. My knees and shoulders are much, much better And I just generally feel better. I do have a small lump in my neck to be checked on my first anniversary but the doc thinks its from a toothache which I had fixed in December. If its still there in April it will be biopsied. I am sure you will feel much better as the weeks wear on. Meanwhile live it up. I am going to Vegas and Franklin to see my kids. Maybe some Florida sunshine for you? All my best.

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

Hi Rocquie.  I'm sorry you got sick during your last infusion but I am extremely glad you are finished with treatment.

I hope this leaves you in remission forever :).

Hang in there and hugs,

Jim

 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Hi Rocquie! 

Wow what a finish. I'm really sorry , but happy your done. I'm sure you're going to feel mentally better the further you get from that infusion. 

You have been so strong threw this just wait to see how healthy your gonna feel in the near future.  

Much love to you !

~GG~

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Thank you so much for your support and comments, Joanie, Nancy, Jeff, GKH, Jim, GG. I appreciate it more that you know.

Rocquie

 

 

Parrishhome's picture
Parrishhome
Posts: 4
Joined: Oct 2015

Thank you for sharing your experience.  I am taking Rituxan maintenance, just finished 1 year, and I am wondering what happens after two years?  My side effects have been very minimal.  I would love to know what , if anything, you are doing now?  Please stay strong and know there are people praying for you.  Parrishhome

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

Welcome to the site and congratulations on being half way through your Rituxan Maintenance. Other than my last infusion, I tolerated the Rituxan pretty well though not completely side effect free. 

What am I doing now? I am on no kind of treatment and take no medications of any kind. I have joined the YMCA to try to rebuild the strength and endurance I lost during my 2 1/2 years of treatment. I am living, loving, and enjoying my life. Thank you for asking. 

Hugs,

Rocquie

 

Parrishhome's picture
Parrishhome
Posts: 4
Joined: Oct 2015

Thank you for being so kind and sharing your experiences.  Even though I have a loving family, no one can understand what we are going through unless they have walked in our shoes.  I'm so glad you are feeling well enough to join a gym!  I'm hoping to do the same!  Please continue to check in so we can know how you are doing!  Thank you again!

Hugs back to you,

Parrishhome

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm so sorry, that sounded horrid!  I too had a similar experience, on my last maintenance but did'nt do it for two years.  I only had seven out of eight infusions.  Rituxin was a bit harder on me than it is on the norm and I found the cumulative effects of the treatment took a toll.  My white blood counts never increased only continued to fall, I was neutropenic for a year then stopped treatment altogether because my counts were a fright.  I became very short of breath which I still am.  I had to be infused for six hours everytime because I couldnt'nt handle it any quicker.  On the last day I was sick like you, stopped everything then received a bag of saline and went home.  That was December 15th of last year.

I hope and pray your port comes out soon and this chapter is over.  Your healing continues, your strength remains with you to your very core, steadfast and strong. 

Blessings for a happy healthy life!

 

Rocquie's picture
Rocquie
Posts: 839
Joined: Mar 2013

I wrote this post 8 months ago. Two months later, I had a CT scan (the first one I'd had in 2 years). The results were excellent, showing continued complete clinical remission. A couple weeks after that, I had my port removed and that was a happy day! 

I am now on a schedule of seeing my Hematologist/Oncologist every four months. At my next visit, in December, if he is still pleased with my health and progress, I will move to every six months. Two or three times a year--there was a time I was at that clinic 3 or more times every week. I am definitely moving in the right direction.

My blessings for your healthy life as well,

Rocquie

 

illead's picture
illead
Posts: 863
Joined: Aug 2012

I knew you had posted in Feb., but I noticed that I did not respond. Shame on me.  I think we may have been in Mexico even tho we have the internet so no real excuse.  Just so happy you continue to do so well and are happy and getting on with your life.  I always enjoy your posts.

Thinking of you,

Becky

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

So far I have been handling the Rituxan just fine. I am guessing that after the Stem cell I will go on Rituxan maintenance. I can't wait to get to the point of just going in for checks and a few tests. To not have my life revolve around medical appts. 

To all who are in remission, I love hearing how your life is now. 

givingrace's picture
givingrace
Posts: 161
Joined: Nov 2012

Thank you so much for sharing you experiance Roquie. Acually I include everyone. I am I think 3 treatments into the 2 yr. stent.

I have been pretty absent from the forum and I started to read this whole conversation and a sence of calmness came over me just knowing you are here. Some trailblazing and some just starting this journey .

Roquie you have been a great inspiration and encouraging support. With all you have been threw... you are truly an warrior and fighter. Cancer can't keep a good lady down. :) Very happy to hear you are in good space today.

I needed to hear this stuff today. I am in the first part of my 2 yrs and actually feeling like I am catching a cold today. I have a scratchy throat feeling and body aches. I am a bit nervous because of the NHL I have  has reared its head several times in the throat area.

I will have more instructions and answers tomarrow.  For today I will be encouraged that no matter what is going on with me there are many victories ahead.My fellow surviors have shined their light so I can see my feet and be reasured no matter what I am not alone.

Keep rocking it everyone!

Very nice to see you all again !

~GG~

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