I live in Lansing Mi and go to the Sparrow Hospital Cancer Center. I know this cancer is rare but in a city of 159,000 I can hardly find anyone else with my cancer.
I've had this stage 3 cancer for over four years . Had several side effects from my infusions. Looking for other people with this cancer
Hello @sweede536 I just noticed that @colleenyoung asked me to jump in on this discussion. Sorry. You say that you’re on IVIG and rituxan and that you’re having some side effects. May I ask what they are (other than the skin problems from rituxan)?
Hello @roberthall0452, welcome to Connect. I would like to introduce you to another new member, @harvie, who also recently posted about being diagnosed with mantle cell lymphoma. @roberthall0452, if you are comfortable sharing a bit more, how are you doing with this diagnosis? Has there been any discussion of a treatment plan?
Hello Swede. I don’t have your cancer, but can certainly identify with unpleasant side effects. Over several years of treatment I have had to address that issue with both my local oncologist and Mayo Clinic hematologist/oncologist. On all occasions they had suggestions for options of treatment. Have you had options presented to you?
One but to old for it as it very hard on your whole system and at 74 now they dont advise it.
The Rituxan has made small purple spots on my arms the they get larger and larger. In two years my skin went from looking great to looking like a 100 year old man . Sometime a vein will blow and start bleeding. My skin is so thin I have
To take bandage kits with me. Anything can tear my skin.
Hi @sweede536, you'll notice that I moved your message to this existing discussion about Mantle Cell Lymphoma. I did this so that you can connect with members @roberthall0452@lottajoy and @maxwell123, who also have this rare cancer.
Swede, you mention that you've had the cancer for 3 years, but are experiencing unpleasant side effects from the Rituxan infusion. I'd also like to tag @1nan and @becsbuddy on this discussion as they may have some thoughts to share about the infusion side effects. How long have you been on Rituxan? Great to hear that you're in remission.
Hello lottajoy,
My Experience: I was diagnosed with MCL in 02/2016.
I was admitted to the hospital with a blood platelet count of 20 after feeling fatigued. My treatment consisted of 5 days in hospital with chemo each day then I was released and had chemo once a week for 8 weeks. The chemo consisted of Rituxin and another chemo that I don't recall, looking for the info but cannot put my hands on it but this treatment worked and I have been in remission for 18 months. I recently went into relapse and am now on Imbruvica and it is showing good results. I am fortunate that insurance is covering this drug because it is very expensive. I did not have any trouble taking the chemo which seemed like a walk in the park when comparing it to the radiation I experienced in 2013 for esophageal cancer which is completely behind me. Please make sure you have a doctor that you feel very good about, it took two trys for me. Look forward to seeing where you go with this and will be watching for you. Best Wishes!
I am a 74 year old male in otherwise good health and I am active in tennis and working out at the gym, plus I watch what I eat.
Hello @harvie, I have been treated and am now in remission. Looking for anyone with this condition to share notes. I just relocated to Az from the east coast and would like to find a doctor so I would not have to fly back and forth. Any info would be helpful.
One side effect is my hands and arms break out in small red blue Mark's then get hudge. Sometimes my veins even blow. I'm 74 but my skin looked like I was 40 when I started taking the retuxin. Its takes all the nutrients out and your skin is as thin as wet tissue.
All that sounds quite unpleasant. You didn’t mention if they offer treatment for your symptoms. Have you been responding to treatment so well that they don’t want to discontinue it?
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Hello @sweede536 I just noticed that @colleenyoung asked me to jump in on this discussion. Sorry. You say that you’re on IVIG and rituxan and that you’re having some side effects. May I ask what they are (other than the skin problems from rituxan)?
I get two infusions every 6 weeks. One with Rituxan and one called IVIG with help boost your immune system.
Yes
One but to old for it as it very hard on your whole system and at 74 now they dont advise it.
The Rituxan has made small purple spots on my arms the they get larger and larger. In two years my skin went from looking great to looking like a 100 year old man . Sometime a vein will blow and start bleeding. My skin is so thin I have
To take bandage kits with me. Anything can tear my skin.
Been on Rituxan for about 4 years.
Its year I was on chemo.
I'm a 74 year old Male and have MCL since 2016. I get two infusions every 6 weeks. Right now it in remission.
I've had it for 4 1/2 years. In remission right now.
I've had it for 4 1/2 years. I'm 74 and its in remission and still get two infusions every 6 weeks.
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1 ReactionHello @sweede536. I also don’t have cancer but do get infusions of rituxan twice a year. I usually get pre-meds of dexamethesone infusion and benedryl before the infusions. You might ask the oncologists about the skin changes you’re having. Open sores and skin tears are good sites for infections. I would recommend wearing long sleeves and keeping your skin very clean. But, please check with your doctor.
This article talks about targeted therapies and skin reactions like you are getting with rituxan.
https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/skin-reactions-targeted-therapy-and-immunotherapy
All that sounds quite unpleasant. You didn’t mention if they offer treatment for your symptoms. Have you been responding to treatment so well that they don’t want to discontinue it?