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?
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 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.
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?
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?
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
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.
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
Found out in February 2016 I had MCL. I'm from Michigan and felt very tired while Deer hunting. I'm 74 and have been on remission for 3 years. As I text I'm getting my retuxin I fusion.
Has anyone had any skin problems. My skin after a year on retuxin got small little bruises which got much bigger. My skin looks like a 100 year old man which now is very thin. Very easy to cut or tear. Have to take medical kit when I travel.
I guess it depends on how involved you want to be in your treatment. The p53 mutation affects some MCL patients and it makes the disease more difficult to treat. It usually requires a non-chemo treatment. My experience is that not many general onc docs look for this and usually it is something that a doc who has a very high MCL patient load (which is not many) is aware of and will treat correctly. If you are interested I can post a link about the mutation or you can Google it.
From what I have read (and I spend a good bit of time at it), that is a good center. The protocol is a standard protocol for someone your age. I would suggest at your next relapse that you go to a national center for a good second opinion. MCL is pretty rare and there are very few national experts (probably less than 10) and there is no one single "standard" protocol. Much is based on your diagnostics. Do you know if you have the p53 mutation?
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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?
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.
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1 ReactionJust the same infusions. Retuxin.
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?
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Like -
Helpful -
Hug
2 ReactionsHi @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.
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Helpful -
Hug
2 ReactionsI 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
Found out in February 2016 I had MCL. I'm from Michigan and felt very tired while Deer hunting. I'm 74 and have been on remission for 3 years. As I text I'm getting my retuxin I fusion.
Has anyone had any skin problems. My skin after a year on retuxin got small little bruises which got much bigger. My skin looks like a 100 year old man which now is very thin. Very easy to cut or tear. Have to take medical kit when I travel.
Live in Michigan, have had this for almost 5 years
I guess it depends on how involved you want to be in your treatment. The p53 mutation affects some MCL patients and it makes the disease more difficult to treat. It usually requires a non-chemo treatment. My experience is that not many general onc docs look for this and usually it is something that a doc who has a very high MCL patient load (which is not many) is aware of and will treat correctly. If you are interested I can post a link about the mutation or you can Google it.
I do not know if I have the p53 mutation. Should I ask?