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Posts (8)

Thu, Feb 7 8:01am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

@travelgirl funny to be called a Lymphoma Warrior…my sister just sent me this shirt, along with WonderWoman socks…shirt says “WARRIOR”!

Thu, Feb 7 7:58am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

Hi Jackie, thanks! I am in my first month of treatment (recent diagnosis). Today is infusion #2 of 4. Last week was 8+ hours and I had a reaction, so expecting today to be another long day. Was a bit taken aback by finally realizing that, however well this treatment works, I will ALWAYS have lymphoma. Good thing I love my oncologist! I am feeling well except for less energy than I like and anxiety(a bit) about…well, everything 😊. Overall, very grateful for excellent medical care and Insurance.

Mon, Jan 14 8:24am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

Thanks. All I know so far is the mass is located where it can’t be removed surgically or radiated…so obviously hoping it can be defeated using immunotherapy/chemo. Stay tuned!

Fri, Jan 11 9:40am · Non Hodgkin's Lymphoma- Watch & Wait Approach in Blood Cancers & Disorders

Good question! I am just recently diagnosed, scheduledfor PET scan next week to help determine next step. If my choices are watch & wait vs. treatment, I think I would push for treatment (because I have a retroperitoneal mass that has taken out one kidney and I would prefer to stop it before it affects anything else — there’s a lot of important “stuff” in that area!) what would be the advantage to watch and wait (other than avoiding the ordeal of treatment)?

Dec 15, 2018 · Leukemia and Lymphoma in Blood Cancers & Disorders

@robbhiller thank you for your feedback. I review books for publishers, so I especially applaud your writing efforts!

Dec 15, 2018 · Leukemia and Lymphoma in Blood Cancers & Disorders

Hard to pinpoint my greatest concern…possibly being a burden, or an object of faux pity maybe…not being able to be physically active is perhaps the biggest one. Thought provoking!

Dec 15, 2018 · Leukemia and Lymphoma in Blood Cancers & Disorders

Hi. Two months ago, my primary doc saw weird numbers on a routine blood test and referred me to a nephrologist, who ordered an ultrasound that showed an atrophied kidney, so she then sent me to the urologist, who ordered a CT scan that showed a retroperitoneal mass, so she sent me to a surgeon, who sent me to the interventional radiologist for a biopsy (WHEW!). I just got the phone call with the diagnosis of small B cell lymphoma and will see the oncologist next (in a couple of weeks).

I am freaking out! I’m not that great at being patient, and I don’t yet know the stage or any treatment options/plan, so my questions are pretty amorphous at this point, but I would appreciate any advice. The mass took out my right kidney so I also have Stage 3 CKD, but my nephrologist reassured me that the two won’t really impact how either is treated.

All this in 2 months. I’m 70 and until about 6 months ago I was quite active (walking, hiking, doing Zumba). Now my exercise is mostly walking and I am just looking for suggestions on how best to approach this whole thing for maximum sanity, and any questions I should ask, things you think are good to know or do when first diagnosed, etc. Thank you in advance, I am grateful for this group!

Nov 19, 2018 · Renal atrophy? (And What do ultrasounds really show?) in Kidney & Bladder

My primary doc ordered a metabolic panel, repeated it to verify bad #s on GFR and Creatinine. Nephrologist ordered ultrasound, showed severe renal atrophy on right side,basically half the size of the left. I had a two normal kidneys in 2010. Referred to urologist who has ordered CT scan. Thanks to Thanksgiving, I won’t hear results for a WEEK (eeek!) and am freaking out. No symptoms of anything, other than my BP went up, now taking meds, it’s fine. The ultrasound said no mass, but I think that’s just kidneys and not all the other “stuff” in that area. Is the CT scan likely to give definitive info? And how do you stay calm while WAITING? Any advice welcome.