Author Topic: Getting Weaker after Each Chemo Session  (Read 14949 times)

Daisy1234

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Getting Weaker after Each Chemo Session
« on: September 22, 2011, 10:33:10 PM »
Hi everyone:

As some of you are aware, I am currently undergoing chemotherapy for MALT Non-Hodgkins Lymphoma caused by my severe Sjogrens.  I'm on a R-CVP protocol which inclues Rituxan, Cyclophosphamide (Ctoxyan), Vincristine and Prednisone (100 mg for 5 days then reduced to my regular 10mg daily maintenance dose) as well as IV Benadryl and IV Saline.

After each round, just had my 3rd one yesterday, I've definitely become weaker and weaker and am not bouncing back very well.  I just saw my Rheumy earlier this week and she was expecting me to have started to experience lessening of my Sjogren's symptoms after 2 rounds of the Rituxan, I'm getting 600mg of Rituxan at each chemo session.  I find that when I come off the 100mg of prednisone, I also experience quite the crash as well and my Sjs symptoms increase back to their usual levels.  Also neither the pred nor the Rituxan is helping with my eyes at all which are 0 and 0 on the schrimers and dry as a bone.  So in a nutshell, I personally haven't noticed any improvement with the rituxan, but perhaps its too early to tell?

I have 5 more sessions of the R-CVP protocol chemotherapy to go, then I'll be on a new regime of IV Rituxan and Benadryl and Saline for about another 18 months. 

I just hope that I can manage this, as I'm getting less and less strong as each infusion occurs.  Also I've developed alot of peripheral neuropathy that I wasn't experiencing before due to the side-effects of the Vincristine which may be permanent or at least will last for a year after the chemo is stopped.  The Onocologist reduced the amount of Vincristine for yesterday's chemo session, but I was still awoken many times last night and tonight with knife like shots of pain in both feet so perhaps more adjustment needs to happen next time.

Oh well, no one ever said that cancer treatment was going to be fun.

Daisy

stephL

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Re: Getting Weaker after Each Chemo Session
« Reply #1 on: September 23, 2011, 03:01:11 AM »
Daisy, what are you doing for the pain? And are your family and friends being supportive?
"Unlike weakness, fatigue can be alleviated by periods of rest." -Wikipedia: Fatigue (medical)

Joe S.

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Re: Getting Weaker after Each Chemo Session
« Reply #2 on: September 23, 2011, 03:21:59 AM »
I am sorry to hear how negatively this is affecting you. My good thoughts are sent to you. It is my hope that you recover faster and respond better than the doctors expect.
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engy

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Re: Getting Weaker after Each Chemo Session
« Reply #3 on: September 23, 2011, 03:23:52 AM »
Daisy, I'm sorry this is so difficult. I think about you daily. I'm sending prayers & hugs

It stinks that you have another issue now with the neuropathy but maybe it won't last so try not to worry. You need to save the strength you have.

One thing I do that maybe you would like to try is to lay with your back flat, close your eyes & take slow deeep breaths to go to a safe place. When you are there pile up any worries, fears, doubts, anxiety, anger, etc. that may be in you. I visualize myself doing this. Sometimes I'm peeling layers & other times I have to unravel it like a sweater from me because its woven itself within. Once I feel as though I have piled it all up I remove the pile. Do this however you want (sometimes I'm creative & sometimes i get help). After the pile is gone, check to see if there is more there.  Sometimes I need to pile twice. Once the piles are removed take deep breaths & Imagine a color or colors that remind you of energy. Pull those colors through your whole body starting at the top of your head & feel the color's vibration going all the way to your cells as the color goes down to your toes. Then slowly open your eyes.

That usually helps me feel a little less "weighed" down when I get rid of those feeling that can be so heavy & energyzapping.

Hope it helps some. I don't have any other advice right now & hope you don't think it's silly but I thought it couldn't hurt to try.

Take care, Carie
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mshistory

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Re: Getting Weaker after Each Chemo Session
« Reply #4 on: September 23, 2011, 04:46:03 AM »
I am sending you many positive thoughts and hopes that you will soon start feeling better.
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anita

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Re: Getting Weaker after Each Chemo Session
« Reply #5 on: September 23, 2011, 04:56:26 AM »
I have read on the neuro forum that cytoxan can also cause peripheral neuropathy...and yes, it can be permanent.

I thought the Rituxan was primarily for extraglandular problems, so I don't know if you'll get dry eye benefits.  Sounds like you have bigger problems then dry eyes anyway.   We'll keep our fingers crossed that it helps you all the way around.
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gurs

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Re: Getting Weaker after Each Chemo Session
« Reply #6 on: September 23, 2011, 05:13:32 AM »
I had a few rounds of Rituxan, and never noticed that it helped with the overall dryness. I think I had less flaring and prob does good to keep things from getting worse, but didnt really notice anything different. I havent gotten any rituxan in the last 1.5 years, and have been super sick, so not sure if the rituxan actually helped or not. I wish you could get a break from all the dryness from all your medications and treatments, I cant even imagine what you are going through. I heard Drinking Penta water helps alot?

Oh, I remember about the prednisone crash too..I had to stay on some medrol for along time to help. I still cant wean off the medrol.
I think my neuropathy got worse too after some of the meds and treatments I had. Hopefully, this will go away. Your on alot of toxic stuff
right now and your body is just going nuts. When its all done, you should be feeling better. Thoughts are with you!

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Daisy1234

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Re: Getting Weaker after Each Chemo Session
« Reply #7 on: September 23, 2011, 05:35:37 AM »
Thank you all so very much for your care and concern and many helpful suggestions.  I have been struggling so with this cancer treatment and have been having more than usual issues because I am not allowed to follow my regular routine for certain procedures that treat some of my more daunting Sjs aspects.  For example I normally get cortizone injections in my SI joints at this time and have been told to forego that until the chemo is over due to the high risk of infection.  Also have been told I am not allowed to have my usual Botox shots injected into my esophagus and pylorus under Endoscopy also due to infection so my Gastroparesis is flaring.  I am also still very very dry and having some nasty lung issues again but will see my Respirologist in another week or so.

For those of you who asked about my emotional support system, I am surely one of the lucky ones.
I am very blessed in having an extremely supportive husband who is there with me at every chemo treatment and will drop whatever he's doing at a moments notice if I say that I need help.  My family and close friends have also been very kind to me.  They are all such lovely people, and I treasure them greatly.

And for all of you, my wonderful Sjogren's family, I turn very often to you all for your so insightful and caring suggestions, so many of which I take to heart and I find great comfort and solace in this very special community. 

It helps me so very much to communicate with others who understand exactly the challenges and trials that this much misunderstood disease throws at us all.

With many grateful hugs,
Daisy
« Last Edit: September 23, 2011, 05:40:56 AM by Daisy1234 »

ohiolady

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Re: Getting Weaker after Each Chemo Session
« Reply #8 on: September 23, 2011, 07:01:22 AM »
Daisy,

You know I just hate that you hve to suffer so much with this treatment.  I am just hoping and praying you get through this and the cancer will be in remission and your Sjogrens symptoms are lessened.  It sure can get discouraging when you are facing such an aggressive treatment and not seeing any concrete improvements.

Take care of yourself, Daisy.  And, please know we all care and here for you.

Anna
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genko_b

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Re: Getting Weaker after Each Chemo Session
« Reply #9 on: September 23, 2011, 10:59:43 AM »
Hi Daisy:

Just wanted to let you know that my brother-in-law underwent the same R-CVP protocol for MALT Non-Hodgkins lymphoma. He was a very healthy person going into the treatment - no underlying Sjogren's or anything - and the treatment knocked him absolutely flat. He was so weak he thought it would do him in. In fact, at one point he asked that the treatment be stopped for a while so he could recoup his strength a bit. Both he and his wife are in the medical field and yet did not expect the treatment to be so harsh in its effect.

I can only imagine how difficult it is for you in these circumstances. It's great that you have lots of support. In the end, that is what makes the difference. We will be rooting for you to get through this and regain your strength.

Take care,

Genko

lindaneall

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Re: Getting Weaker after Each Chemo Session
« Reply #10 on: September 23, 2011, 11:09:01 AM »
Daisy, my heart sunk when I read the title of your post.  You are always so upbeat and I am just so sorry to hear that this chemo is wiping you out so badly. You certainly are on some heavy duty meds.  I just wanted to tell you that I am praying for you and hoping that you will notice some improvement soon after the grueling regimen you are on. 

Sending lots of love and hugs :)

Linda

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Re: Getting Weaker after Each Chemo Session
« Reply #11 on: September 23, 2011, 11:10:38 AM »
I'm so sorry, Daisy, that you're having to go through such a rough chemo. Know you're in my heart and in my prayers.
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cat

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Re: Getting Weaker after Each Chemo Session
« Reply #12 on: September 23, 2011, 12:03:02 PM »
Hi Daisy
I also hope you will be feeling better soon and wish you the best outcome from your treatments.
 
Hang in there you're a fighter.
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Katybarstool

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Re: Getting Weaker after Each Chemo Session
« Reply #13 on: September 23, 2011, 01:11:08 PM »
Daisy

You really are having a rough time just now, but it is heartening to know that you have such a wonderful support network of family and friends.

Will be thinking about you, and remembering you in my prayers.

Kathyx

mebog

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Re: Getting Weaker after Each Chemo Session
« Reply #14 on: September 23, 2011, 01:36:18 PM »
Hi Daisy,  I don't post often but I want you to know you are in my prayers.

Sending you HUGS and Good Wishes.

mebog