Dry skin/mouth Bendamustine/Rituxan

Posted by valandsheri @valandsheri, Mar 30, 2023

Hello - my husband is getting ready for Round 3 of bendamustine/rituxan for NHL Follicular Lymphoma and just today mentioned that his mouth was dry for a little while and then tonight said that his skin was quite dry and that he had tiny flakes on his stomach brush off. He asked me if
"this stuff dries you out?" I do not know. Thanks for any enlightenment.
😊

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@tphearts

Non-Hodgkin Lymphoma
I have Lupus and Sarcoidosis for years and been on hydroxychloroquine
The lymphoma is new I will have a couple radiation treatments in between since I already have a compromised immune system I did not know if I would have a worse reaction?

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Most of us who receive Rituximab have a weakened immune system. So I’m not sure if that has a bearing on the possible reaction. Over the course of treatment though, your immune system could become more compromised but it should return to ‘normal’ when treatments end.

I’m sure you’re cautious already to avoid infections and illnesses. Wearing a mask out in public settings like restaurants, church, movies, planes…and of course hand sanitizers help reduce the possibility of illness.

It’s hard to tell what type of a reaction you might have to the Rituxan. My only side effect was with the initial fusion. I didn’t experience anything over the course of 4 weeks that I had the infusions except that the targeted inflammation on my spinal cord was successful!
Let me know how you do, ok?

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@loribmt

@tphearts, I just want to make sure you see this reply by @valandsheri about using Rituximab. As you can see you just gained a new family. We’re all here to support you.

Oh my gosh, Sheri, I can’t believe it’s been a year already. That’s crazy! I’m so happy Mr Crabby Pants is back to his jovial self!! While no one looks forward to these treatments, they can work wonders! ☺️ Thank you for helping out Teri! Hi to Val for me.

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Thank you so much! Sometimes I feel very alone in this process. My husband is always here for me but doesn’t communicate with me about it and I feel guilty talking to him about it because he lost his 1st wife from cancer 35 years ago
And my sons live out of town I appreciate having a venue like this I can come too❤️

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@tphearts

Lori if you don’t mind me asking is it normal to have panic attacks? I have never been a person to have had panic attacks but am getting them frequently now. I was fitted for the mask for the radiation and when it was snapped down and I couldn’t move I had a major panic attack I hyperventilated now I am afraid it will happen again during the radiation I have anxiety thinking about it

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Hi Teri, you’re dealing with so much right now! That brings on an huge amount of underlying stress. Even if you’re cool as a cucumber and not prone to anxiety, it’s possible to have panic attacks. During my cancer treatments, locally and at Mayo, all of my oncology teams asked often if I felt panicky or needed anything for stress. It’s that common!

I used to have panic attacks when I was in my 30s…oye, that was 40 years ago…cringe. Anyway, I still remember clearly how awful they were, coming out of nowhere! They were terrifying. I went through bio-feedback training which helped immensely and I’ve never had a repeat.

There are a number of techniques you can try if you feel one coming on such as a grounding exercise:
This is my favorite… To help ground yourself back in reality during a panic attack, find the following items in the room:
5 things you can see
4 things you can touch
3 things you can hear
2 things you can smell
1 thing you can taste

However, worrying that you might have a panic attack during treatments such as a long MRI or wearing a mask for radiation, that exercise may not be enough. It takes practice and you need results sooner. From my experience, ask your doctor for a prescription for lorazapam (Ativan). It’s a mild anti-anxiety med and works great for claustrophobic situations and only taken for the procedure. I frequently have 3 hour MRIs where my head is secured, so I understand your feeling with the radiation mask. While the MRI no longer bothers me, I still need the Ativan because I can’t hold that still for 3 hours.
I think it may help you too. What do you think about asking for an anti-anxiety medication?

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@loribmt

Hi Teri, you’re dealing with so much right now! That brings on an huge amount of underlying stress. Even if you’re cool as a cucumber and not prone to anxiety, it’s possible to have panic attacks. During my cancer treatments, locally and at Mayo, all of my oncology teams asked often if I felt panicky or needed anything for stress. It’s that common!

I used to have panic attacks when I was in my 30s…oye, that was 40 years ago…cringe. Anyway, I still remember clearly how awful they were, coming out of nowhere! They were terrifying. I went through bio-feedback training which helped immensely and I’ve never had a repeat.

There are a number of techniques you can try if you feel one coming on such as a grounding exercise:
This is my favorite… To help ground yourself back in reality during a panic attack, find the following items in the room:
5 things you can see
4 things you can touch
3 things you can hear
2 things you can smell
1 thing you can taste

However, worrying that you might have a panic attack during treatments such as a long MRI or wearing a mask for radiation, that exercise may not be enough. It takes practice and you need results sooner. From my experience, ask your doctor for a prescription for lorazapam (Ativan). It’s a mild anti-anxiety med and works great for claustrophobic situations and only taken for the procedure. I frequently have 3 hour MRIs where my head is secured, so I understand your feeling with the radiation mask. While the MRI no longer bothers me, I still need the Ativan because I can’t hold that still for 3 hours.
I think it may help you too. What do you think about asking for an anti-anxiety medication?

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I definitely will ask. I had sent my radiologist/oncologist through the portol
Friday after I left and he has not responded yet but I was planning on reaching out again tomorrow.
Again Thank You So Much!

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@loribmt

Most of us who receive Rituximab have a weakened immune system. So I’m not sure if that has a bearing on the possible reaction. Over the course of treatment though, your immune system could become more compromised but it should return to ‘normal’ when treatments end.

I’m sure you’re cautious already to avoid infections and illnesses. Wearing a mask out in public settings like restaurants, church, movies, planes…and of course hand sanitizers help reduce the possibility of illness.

It’s hard to tell what type of a reaction you might have to the Rituxan. My only side effect was with the initial fusion. I didn’t experience anything over the course of 4 weeks that I had the infusions except that the targeted inflammation on my spinal cord was successful!
Let me know how you do, ok?

Jump to this post

Hi Lori,
I just wanted to follow up with you my first infusion went well until the last 30 minutes and I started getting a headache, they gave me Tylenol and I left 30 minutes later. My pain became more severe and I had swelling by the time 1 am in the morning my husband called the after hours line and they said increase my pain medication (being it’s now the weekend) Sunday was ok and then when Monday rolled around the pain was back and a 10/10 spent 9 hours in the ER. My head and face is where my lymphoma is the most severe
I have my 2cd infusion tomorrow and I am praying it doesn’t happen again.
They did put me on steroids this week to hopefully counter act and will try and get the pain under control before I leave due to it being on a Friday.

REPLY
@tphearts

Hi Lori,
I just wanted to follow up with you my first infusion went well until the last 30 minutes and I started getting a headache, they gave me Tylenol and I left 30 minutes later. My pain became more severe and I had swelling by the time 1 am in the morning my husband called the after hours line and they said increase my pain medication (being it’s now the weekend) Sunday was ok and then when Monday rolled around the pain was back and a 10/10 spent 9 hours in the ER. My head and face is where my lymphoma is the most severe
I have my 2cd infusion tomorrow and I am praying it doesn’t happen again.
They did put me on steroids this week to hopefully counter act and will try and get the pain under control before I leave due to it being on a Friday.

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Hi @tphearts. Oh my goodness, I’m so sorry to hear you had a headache and pain after the infusion! How awful to end up in the ER! No wonder you’re a little leery about a repeat. From reports I hear from personal experience, acquaintances and members in the forum, usually the first infusion is the most reactive. So I’ll be anxious right along with you tomorrow that everything is calm and uneventful. The steroids should help! Let me know how you do, ok?

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@tphearts

Hi Lori,
I just wanted to follow up with you my first infusion went well until the last 30 minutes and I started getting a headache, they gave me Tylenol and I left 30 minutes later. My pain became more severe and I had swelling by the time 1 am in the morning my husband called the after hours line and they said increase my pain medication (being it’s now the weekend) Sunday was ok and then when Monday rolled around the pain was back and a 10/10 spent 9 hours in the ER. My head and face is where my lymphoma is the most severe
I have my 2cd infusion tomorrow and I am praying it doesn’t happen again.
They did put me on steroids this week to hopefully counter act and will try and get the pain under control before I leave due to it being on a Friday.

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Good morning, @tphearts! Just wanted to wish you well on your infusion today! ☺️

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@tphearts

Thank you ❤️

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Yes!! Wishing you well too. 🌻🌻

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