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Posts (6)

Mon, Jun 3 10:41am · Triggers for caregivers in Caregivers

Colleen I think you might be on track there. I just find now the most minor of thinks can cause a huge panic. It is getting better again but it totally surprised me. I have tried a few different Apps, Head Space, Breathe and Calm. I ended up choosing to purchase Calm after using the free version. And the reason was because it has bedtime stories for adults which I find very beneficial to help me get to sleep. Or get back to sleep when I’m awake during the night.
Thank you for the link. I will check them out.

Sat, Jun 1 7:50am · Triggers for caregivers in Caregivers

Triggers! Wow! Yes I’ve had a few now. My husband was treated at the Mayo with CAR T therapy for lymphoma. It was a last resort which I’m happy to say has been successful thus far. He had some pretty awful side effects and was in ICU twice. They gave him steroids while in ICU when it was really bad. Now that he is home he has had monthly IVIG infusions. Well he had a reaction to the infusion and had to be given a steroid. Well who would have thought that would do it? Not immediately but later that evening I started shaking and fell to pieces. He was sleeping away from all the meds totally unaware which I was happy about. But I have had a hard time since then. Even the mention of steroids can cause a panic. Now I know you asked what people do and what I have found helpful is a meditation app. Sounds silly but 10 minutes of listening to a soothing voice and the other things calms me right down. It is getting better but I imagine there will be more triggers.

Wed, Apr 10 6:58pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Krista.
I am Brenda and was Bob’s main caregiver. First let me say welcome to the CAR-T family. Sorry that you are having to be here, but we were very thankful to get the opportunity! It is a whirlwind and I cannot imagine doing it with young children. I can only share my experience as a care giver and not all are the same. I am very grateful I had people to relieve me and give me a break and to help at the GOL. When we were told to be with him 24-7. We did, and both neurotoxicity events came on during sleep. I was very grateful I was there. Nurses are fantastic but they cannot be there every minute. Lots of time it just involves watching them sleep. In our case that was important. Wifi is great at the Mayo.
We wish you, your family and extended family all the best! As a granny I’m glad you have grandparents to be with the children so you can be with your husband if he needs you.

Mon, Feb 11 9:43pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

I am glad everything turned out okay. Yikes! We love our grandchildren and want to spend time with them.
I thank you for your update. To remind us to always be on guard. Sometimes I think I’m paranoid about the germs. This reminds me to stay vigilant.

Mon, Feb 11 1:55pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Hi Ann
What a horrible eye opening experience! Thanks for the heads up! Thus far Bob has avoided any illness. Our Mantra is “ Wash your hands, wash your hands, wash your hands, and don’t touch your face!” We will definitely be keeping up with that! I’m just curious was Dave on any antiviral medication? Or medication to prevent fungal pneumonia?

Nov 17, 2018 · Joint and muscle pain in CAR-T Cell Therapy

Mark this is Brenda. Bob’s wife and care giver. He remember very little of the whole two weeks he was in the hospital and even some things from after he got out. He has no real desire to know or hear about it either. As our son (40years old) said, “ It’s okay dad you don’t need to remember. Mom and I will never forget. “
I think the joint pain came long after release from the hospital.
Brenda