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Hi Marianna, welcome. You're so wise to reach out to other patients and caregivers familiar with Waldenstrom to get a picture of what you might suspect as the father of your beautiful children deals with the disease and treatments. Let me bring in some other members who can offer their experiences, tips and support like @jam5 @loribmt @puffwithfluff @ejrquast @patio29dadio @connie72 and others.
How did chemo go today? How is he feeling?
Replies to "Hi Marianna, welcome. You're so wise to reach out to other patients and caregivers familiar with..."
He was really nervous going in but he took it like a champ. He was only able to do half of his chemo because he was so low with his blood levels. I believe he will be getting another blood transfusion today. He didn't get sick after or anything he was just really weak probably because of the low blood levels. But in Jesus name we pray a miracle happens and maybe this nightmare disappears one day. What do you think about him getting a second opinion or going to a bigger city? We live in a small town. I am scared that he could be getting better treatment else where than here.
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Reaching out for those with WM experience is extremely helpful for a rare lymphoma. I was diagnosed with WM in 2014 and very thankful to currently be asymptomatic. The International Waldenstrom’s Macroglobulinemia Foundation, IWMF, provides amazing support for patients and families, including a specific support group for younger patients. I happen to be an IWMF MN and WI support group leader.
Knowing the treatment he is receiving would be helpful for what he may experience. Thank you for your caregiving and support.