Out of the shadows……
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- This topic has 7 replies, 7 voices, and was last updated 14 years, 4 months ago by vzimarino.
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August 14, 2010 at 4:36 pm #40276vzimarinoMember
My brother just completed his first round of chemo xeloda/gemzar. Around day 7 of the IV (gemzar) his ankles swelled. Went to cancer center to be sure that it wasn’t blood clots, it wasn’t. He is weaning off of steroid that he took while getting radiation. That helped his pain in neck (lots of met tumors there) but as he weans off the steroid his pain is returning. Oncologist increased his pain med (methadone) by 1/2 pill. I don’t know the dosage but my brother doesn’t like taking too much of it cuz of getting tired and feeling like he’s in LA LA Land. No one has suggested RA, seems they think the pain is due to tumors on spine.
August 14, 2010 at 11:09 am #40275katieloumattMemberHello John,
Please can I join the others in welcoming you to the board. I’m glad you have decided to join us and hope you will get the support and advice that you need.
Come back often and update us on your progress, wishing you all the best.
Katie
August 13, 2010 at 2:59 am #40274John ThomasSpectatorHello Margaret,
I don’t know of a correlation between Xeloda and Rheumatoid Arthritis. We have an English cousin with full-blown RA, and his treatment is a mild chemo and steroids. Perhaps Tom would benefit from a different steroid.
For me, besides the pain/swelling relief, an added plus of the Prednisone is appetite stimulation. I am now on a “See Food” Diet. I am not so sure that I want to go back on chemo because I feel so good. I will make a decision after this months PET and MRI.Best wishes for you and Tom, we pray that he can find some relief.
John & Linda Thomas
August 13, 2010 at 2:13 am #40273mlepp0416SpectatorHi John:
Wow, reading your introduction made me really stop and think. My husband Tom (My Husband and Cholangiocarcinoma) has been on Xeloda and suddenly he too has been diagnosed now with Rheumatoid Arthritis. I’m beginning to wonder if that is a side effect of the Xeloda? Tom also developed the joint ache and also the joint swelling. Sometimes it seems that the ‘cure’ is worse than the disease.
All his docs have given him so far for the pain associated with the Rheumatoid has been pain killers. And he takes Advil for the swelling but to date, no real relief from the swelling. In fact, he just had to go to the fire station to get his wedding ring cut off his finger because the knuckle was so swollen that the ring was cutting off the blood suppy and we simply could not get the ring off!
Tom is diabetic so Predisone causes his blood sugars to be very elevated so that is not an option for him, but perhaps if he could take that every other day maybe it would help him somewhat with the swelling. We’ll have to query his doctor on that!
Has anyone else experienced Rheumatoid Arthritis appearing after being on Xeloda?
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
August 12, 2010 at 7:58 pm #40272linda-zSpectatorHi John.
Welcome to our Board, and thanks for sharing your experience with us. I hope you come back often to join in conversations with us.
Thanks,
Linda
August 12, 2010 at 2:50 am #40271lainySpectatorHi John and welcome to our wonderful family! Sounds like you and your wife have a fantastic attitude and that will get you through anything. We are so happy to have you aboard and thanks for telling your story.
August 12, 2010 at 1:53 am #40270marionsModeratorHello John and thank you for coming out of the shadow in order to share your story of hope with us. Congratultions on holding this disease at bay. In fact, every since I have come to know the world of ‘Cholangiocarcinoma the world “stable” has taken on a new meaning for me. I wish for continued success and thank you again for joining us.
Please, stay with us.
Best wishes,
MarionAugust 12, 2010 at 12:32 am #3811John ThomasSpectatorI was diagnosed with ICC on April 10,2009. The next week I was referred to a local oncologist, who immediately referred me to Stanford for surgical evaluation. Two weeks later, deemed inoperable by the Surgical Team, we returned to our oncologist for a treatment plan. In June,2009 I started on a daily Radiation and Xeloda regimen, which was completed in July. In September I started on Gemcitibine, and completed nine cycles. In December I was re-evaluated by the Surgical Team at Stanford and again rejected.
In April 2010 my oncologist consulted again with Stanford, and Cisplatin and Xeloda were recommended for my next chemo regimen, after letting my body rest for a month or so. Two weeks later, my joints began to swell and ache, I went in for bloodwork and was diagnosed with Rheumatoid Arthritis. I started on Predisone and the arthritis is under control. I have not restarted chemo because my numbers are down, and scans appear stable. My energy and endurance have returned and I have gained fifteen pounds.
We discovered CC.ORG soon after diagnosis and have spent many hours reading and sympathizing with these other ‘SPECIAL” people. My personal journey has been relatively easy compared with the stories I have read. I am blessed with a wonderful wife, who is my staunchest advocate. Our initial shock and disbelief have become a firm resolve to live each day to the fullest. Our prayer is that other “Special’ people will share our HOPE.
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