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Non Hodgkin's Lymphoma- Watch & Wait Approach

Blood Cancers & Disorders | Last Active: Oct 7 11:27am | Replies (234)

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@njnana

The NLP Hodgkins Lymphoma typically affects males in their 20's and 30's which is your son's age range. I was diagnosed at the age of 53 and am a female! I did learn since my diagnosis that this type of lymphoma affects the body differently if below the diaphragm versus above (in chest area and head). It seems that the disease is more likely to be more slow growing (or remain 'dormant') below the diaphragm than above where it may become more active. Because this type of lymphoma can respond well to Rituxan (which targets the CD20 antigen on normal and malignant B-cells), many have maintenance treatments of Rituxan several times throughout the year. Since your son has now received the RCHOP treatments, his doctors may not want to have him go through this again in the very near future. Have his doctors discussed only Rituxan again & possibly weekly for maybe 4 weeks? Please also be cautious that doctors do not request an over abundance of CT scans. My oncologist told me that he prefers to never have me undergo a PET scan again (unless my health drastically changes) because of the high dose of radiation exposed to the body. In fact, as long as my symptoms remain 'calm', my oncologist has now recommended a CT scan every 18 months, so this is my first 6 month span without a CT scan. I have my 6-month visit next week. I sometimes imagine that every little 'pinch' or 'cramping' in my abdomen is the result of enlarged lymph nodes. My blood work has always been normal, so having normal blood work this coming week will not be an indicator. I definitely recommend contacting your son's insurance company to see if they cover multiple opinions. Gather his reports (I keep hard copies and also scan and save to a flash drive so I can easily provide to whichever doctor needs the information). Have your son gain access to all doctors' patient portals to access information easily. Ask him to also give you access so that you can help him should he not feel well. Cancer centers (especially those affiliated with large teaching institutions) have a 'second opinion' process which has been very helpful. Oncologists and hematologists expect you to obtain multiple opinions and they actually admire you for doing so! Depending where you live, I was very pleased with my visits to Johns Hopkins in Baltimore and University of PA in Philadelphia. I live in central NJ so I have the benefit of being within 3 hours of many teaching institutions.....unfortunately not close to Mayo. Your son is lucky to have you helping with decisions. I will keep your son, you and your family in my prayers. I have 3 sons all close in age to your son. I am sure he needs you more than ever at this time. Hoping for great results!

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Replies to "The NLP Hodgkins Lymphoma typically affects males in their 20's and 30's which is your son's..."

My doctor told me that CT scans also have radiation and that in the absence of B-symptoms, or complaints, they are also unnecessary.