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ladeseck
General Discussion • November 3
Post stem cell concern
Our 31 year old daughter has a terrible gag reflex (has all of her life) and is really nervous about getting a feeding tube placed after her Stem cell transplant:-( She is afraid she is just going to throw-up the second they try to place it! She knows that this has been shown to allow her other organs to basically not work so hard and so she can just get the nutrition she needs, but is really freaking out about this! Any suggestions or recommendations? Anyone else have this issue?
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sharper
Chronic Lymphocytic Leukemia Discussion • October 28
My story
I am 65 years old now but was diagnosed 7 yrs ago with Wait and Watch. Since then my spleen is enlarged, I have swollen lymph nodes in few places, WBC is 41,000 with low platelets and low RBC. Still no treatment at this time but I do have IVIG infusions every 3 months. I know treatment may be on the horizon but until then just trying to live healthy.
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Michael
Chronic Lymphocytic Leukemia Discussion • October 27
High WBC & Spleen: Is It Time to Treat?
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I have a 20 year history of cll, thus far just watching. No fatigue or adenopathy to speak of. WBC now up to 200,000. Doctor wants to treat me.Only other factor is my spleen is 17.5 cm. I feel fine. Is the white count or splenic size enough reason to treat?
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Jim9793
Chronic Lymphocytic Leukemia Discussion • September 28, 2025
Experiencing Lung Issues on Zanubrutinib?
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Anyone have this while in therapy with Zanubrutinib for CLL - “peribronchial vascular groundglass opacities in the right upper lobe in addition to a groundglass opacification in the left lower lobe” (of lung). Would love to hear anyone’s thoughts. Worried.
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caraofeve
General Discussion • September 25, 2025
Considering Not Getting an ASCT - Your Experiences?
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Hello everyone and thank you in advance for reading and any input you can provide? Has anyone had any experience or information related to after induction therapy opting not to proceed with a ASCT although eligible and it was recommended (not frail)? I understand the standard of care and process entailed therein however have not heard much detailed information or testimony as to why anyone opted not to proceed with ASCT (what factors were that decision was based on) and what was their outcome was? I am trying to balance both side of the coin. I am scheduled for my ASCT consult on October 15th at the Mayo Clinic. Any advice or information is greatly appreciated. I want to ask all the right questions and explore all options and avenues of care. I am 55, was diagnosed with Multiple Myeloma on July 9, 2025. To my disappointment I learned (in preparation for an evaluation with a MM specialist) my hematologist/oncologist identified my diagnosis date as 5/22 and test results support the diagnosis on this date. However I was not verbally informed until 7/9, after a PET Scan on 6/17 and a bone marrow biopsy on 6/19, that I have Multiple Myeloma and started induction therapy on 7/16 with the 4 drug regimen D-VdR. I am a good patient and believe in medicine and my drs and follow instruction/advice to the tee. I am that can do person. However I realize I need to be extremely proactive and informed in this case with my Myeloma. I want to be the co-pilot versus a back seat driver and plan to educate myself and utilize the amazing resources and network provide by the HealthTree Foundation. Denise