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Posts (21)

Fri, Oct 11 3:28pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

Glad to hear your son is doing well Barb. Interesting hearing your son had a reaction to his immunoglobulin infusions. I did as well which surprised my oncologists. In my case, they changed the product and provided some pre infusion medications. My reaction surprised them as apparently this is not prevalent. If you folks have the time, I encourage you to check out the Cancer: Managing Symptoms site on Mayo Connect. There may be some information shared by others you folks can use to help get past the tiredness.

Fri, Oct 11 3:01pm · CAR-T Cell Therapy: Introduce yourself and connect with others in CAR-T Cell Therapy

I can relate to getting right sized out of work as well Ann. It happened for me just a few months before I was diagnosed with Lymphoma. We did not however relocate this time, (We did relocate five times during my career) always tough. I concur it is tons of work. Glad to hear Dave is doing well. I am 15 months post Car T infusion. I did receive six Immunoglobulin infusions to get my immune system up within a normal range. I continue receiving regular monthly blood tests. I assume Dave is in the same process? Did your relocation leave you within a reasonable distance to Mayo Clinic for the follow up checkups?

Tue, Oct 8 4:42pm · Emotional health after cancer in Cancer

I am happy to hear your lab work is normal. That is a win in anyone’s books. I too have found scans to cause anxiety. I concur that friends are great but not always what we need in the moment. It is comforting to know that your dog provides a great amount of comfort, pets do indeed have a calming effect. Never feel bad that your mood is not exactly the same as the next person. Treatments and that knowledge of having cancer effects us all in different manners. Have you tried a “meditation” app when your anxiety builds?

Sat, Oct 5 11:50am · Anxiety due to Cancer in Cancer: Managing Symptoms

@louise73 – Thank you for your prayers. I am so glad you decided to get professional help with your symptoms. Consulting professionals I find is most beneficial when we encounter the unknown. I encourage you to continue to reach out on Mayo Clinic Connect as there are many Connect participants that are willing to share experiences.
Are you new to Connect?

Mon, Sep 30 1:50pm · Anxiety due to Cancer in Cancer: Managing Symptoms

I am sure there are very few of us diagnosed with cancer that do not, or have not suffered from some form of anxiety. Anxiety, for me started at the time of diagnosis, Large B Cell Lymphoma, the initial shock of that knowledge was the trigger. It is not that it occupied every minute of the day, with everything else that accompanies cancer treatment, there was more than enough happening to occupy the hours. I also recognized that the triggers changed as I moved along the path of cancer care and treatment. Anxiety also led to some wakefulness which led to fatigue, other common side effects.

Some of the triggers of anxiety for me were: How early do we need to leave the house to make it to the appointment on time. Will I have any side effects from this session? Are the sounds of the IV pumps during chemotherapy going to bother me today? (interestingly, those pumps made me very anxious almost all the time.)

To combat anxiety, I took the following actions to lessen this symptom of cancer: Exercise, when I had the energy I walked out of doors, outdoor distractions helped to focus my mind on what I was doing in the present. I meditated and used “apps” such as “Calm” to take my mind off the stresses. When I could, I took advantage of a counselor who coached me to discuss how I was feeling about things.

Are you undergoing any anxiety? What works for you to reduce your anxiety levels?

Tue, Sep 24 5:24pm · CAR-T cell Therapy: Joint and muscle pain in CAR-T Cell Therapy

Hello @jenn22
The joint pain lasted a few months for me. After learning others had some as well, I exercised and did a lot of stretching to insure the muscles were not contracting due to lack of use. This worked well for me. I did not do more than mention it to my doctor as I was not interested in taking medication for it. Are you in a position where you can stretch after your exercises for the time being until you see your doctor?

Mon, Sep 9 12:14pm · Protecting patient from getting infections from me & others in Caregivers

I can’t speak to the ducting of a heating system but I relay my thoughts on having the joys of grandchildren contact.
For me, mental health is a priority. Having contact with friends and family is important for my mental state. In regards to grand children, though they are out and about a lot and can be little germ bags (or vectors of disease), I feel they can usually be in proximity to me. The rules were and are simple, come visit with clean clothes, insure you are not sick, wash your hands when you get here. My wife and I have a very strong relationship, however we both need to interact with others to keep spirits up and those children are a great way to insure that happens.
Hope this helps.

Mon, Aug 26 8:45am · Protecting patient from getting infections from me & others in Caregivers

Hi @raanderson
I have a compromised immune system due to Lymphoma treatments. My wife and I still go out publicly. We are very cognizant of where we go. In high traffic areas we keep our distance from others as best we can. We keep the hand sanitizer close by and use it often. (my wife’s motto is “wash your hands, wash your hands”) When we are at a venue where we feel more care is required like doctor or hospital appointments, as soon as we get home, we get a change of cloths, and wash our hands. In some cases, even take a shower. I feel that for care givers, it is important that you be able to do many of the things you did prior to the circumstances that brought you to the point of being a caregiver. I feel, though I am not an expert, you should be comfortable to take part in many of those meetings. I am happy to say in over a year, we have not brought an infection or bug home. (Be extra cautious in the up-coming flue season)