My Numbers For My Tumor Markers 4 Weeks Ago Was 12.2, No Chemo(Revilimid) For 3 Weeks, Eye Surgery. Numbers Are 7.7 Now. Has Anybody Had T
The information is so helpful,but would like it to be elaborated further for students doing Research.
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What Is GVHD?
Will Rezurock Reduce The Damage From GVHD Or Stop It?
Yes, Rezurock (belumosudil) can help reduce GVHD damage! It works by blocking specific inflammatory pathways that cause GVHD symptoms. In clinical trials, about 75% of patients saw improvement in their symptoms within 6 months. While it may not completely stop GVHD, it can significantly improve quality of life. Always take it exactly as prescribed and keep regular check-ups with your doctor to monitor progress.
For Those Living With Chronic GVHD, What Strategies Have Helped You Manage Your Symptoms Day-to-day?
Here are some practical day-to-day management strategies for chronic GVHD:
1. Stay hydrated and maintain good skincare routines for skin GVHD
2. Use artificial tears and avoid dry/windy conditions for eye symptoms
3. Practice good oral hygiene and use prescribed mouth rinses
4. Keep a symptom diary to track flares and triggers
5. Follow medication schedules carefully
6. Stay active within your limits
7. Join support groups to connect with others
Always work closely with your transplant team, as they can adjust your treatment plan based on your specific symptoms.
If You Have Chronic GVHD Affecting Your Joints, What Symptoms Did You Notice First, And How Have They Changed Over Time?
Here's what most people notice first with joint symptoms in chronic GVHD:
The earliest joint symptoms often include:
- Morning stiffness and achiness
- Decreased range of motion
- Tightness in joints, especially hands/wrists
- Muscle weakness near affected joints
- Joint tenderness when moving
Over time, symptoms may progress to:
- Pain with movement
- Contractures (permanent tightening)
- Limited mobility
- Joint swelling
- Need for assistive devices
Early treatment is important to prevent permanent joint damage. Work with your transplant team to manage symptoms using medications, physical therapy, and joint protection strategies.
Have You Found Any Treatments Or Lifestyle Changes That Have Helped Improve Your GVHD Symptoms?
Here's what research shows can help manage GVHD symptoms:
1. Medication adherence is crucial
2. Regular exercise (approved by your doctor)
3. Balanced nutrition with adequate protein
4. Good skin care routine
5. Sun protection
6. Frequent hand washing
7. Staying hydrated
8. Regular rest periods
9. Stress management techniques
Always consult your healthcare team before making lifestyle changes.
Have You Experienced Nail Changes Due To Chronic GVHD? What Was The First Symptom You Noticed?
Common nail changes in chronic GVHD can include:
1. Nail dystrophy - Distorted nail growth and texture
2. Thinning and brittleness of nails
3. Ridging and cracking
4. Separation of the nail from the nail bed (onycholysis)
5. Loss of nails
The first symptoms people often notice are brittle nails that break easily and ridging or texture changes in the nail surface. These changes often develop gradually and can affect both fingernails and toenails.
These nail manifestations are just one possible symptom of chronic GVHD and don't always occur in every case. If you notice concerning nail changes, discuss them with your transplant team as they may want to evaluate if they represent GVHD activity requiring treatment. Good nail care and protection from trauma can help manage symptoms.
If You Or A Loved One Has Experienced Chronic GVHD, What Has Been The Biggest Factor Affecting Your Quality Of Life Post-transplant?
The biggest factor affecting quality of life for chronic GVHD patients often involves managing ongoing symptoms while trying to maintain daily activities. Major challenges typically include skin changes affecting mobility, fatigue impacting work/social life, and oral/eye symptoms affecting eating and vision. These symptoms can create a "new normal" that requires constant adaptation.
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