u/bidoville

Hey lymphomies. I wrapped my first DA-R-EPOCH about a week ago. About 36 hrs later I noticed my first tingly numb fingertips.

Seems slightly worse in my left hand than my right, thankfully not in my toes yet.

Seems like maybe it it improving slightly.

My PA is surprised that I already have neuropathy and suggested cold gloves at the next infusion.

Anyone else get it early on? Did it resolve after treatment?

Does anything help?

I use my hands a LOT for work and hobbies and am pretty concerned.

Got my port implanted about 9 days ago and had its first use yesterday for CECT.

The nurses were a little nervous about a new port/fresh port and had a really hard time finding the three dots under the skin.

One nurse said she thought the port was tilted. I do feel like the port has moved slightly since the procedure, but it was so inflamed after it’s hard to tell.

Took a nurse two attempts for blood return. Also didn’t wear a mask after asking her if she was supposed to.

Way better experience for a CECT than doing a vein cath at least! But now even more apprehensive before chemo Monday if there is an issue with the port to consider?

Had a double procedure of chest port and bone marrow biopsy about three days ago, and was feeling better yesterday evening but back to being super achey and tight today

Doing my best to take it really easy, just my neck, shoulders, and upper back are just exceptionally tight and sore. Have been doing heat on and off today (ice on and off first 24hrs), and alternating ibuprofen and acetaminophen.

Feels like even the back of my head is sore.

The port itself is obviously tender and sore, but it’s almost like the incision on my neck leading down to the port is in worse shape, where they threaded the catheter.

Just feeling crappy and whiney I guess. I’m sure it will improve. Expecting DA- EPOCH to start in a week or so.

Edit: lucky that I could do both of these under general anesthesia.

Hey everyone. Thanks for all the wonderful community and support. I've been diagnosed with PMBCL after a summer of surgical biopsies, labs, scans, and an ER trip that kicked all this off.

My labs have been perfect: completely normal and healthy despite the tumor silent growing in my chest. ECHO looked perfect. LDH is 150.

The only thing is I've been overweight my whole life. I'm down 30-40lbs from my heaviest 10+ years ago. I'm active, strong, and work a physically demanding job and have active hobbies. My resting HR is 75 and my blood pressure is great. I eat mostly vegetarian and mediterranean and cook 90% of my meals at home.

But I'm concerned about weight gain through chemo, more so worried about muscle loss. I can't believe how tired I've been just from the weeks after my thoracic surgical biopsy.

Thankful to have caught my cancer before it really hit me hard (my lymphocytes are just starting to trend down).

I'm also worried about my hormones (late 30s Female) and getting knocked into menopause. Has any one ever started hormone support before or during chemo? Just in general worried about the hit to my system and how it will impact my body strength and weight.

Just curious.

I was just diagnosed with PMBCL lymphoma about a week ago. Two of my parent’s siblings had blood cancers: follicular lymphoma and leukemia.

Was wondering how many of us here have these running in our families.

Edit: sorry about the shitty club we all belong to.

Hey folks. Nearly four weeks to the date since my health issues started, now with a fresh PMBCL diagnosis.

About a month ago I went to the ER for a sudden back right shoulder pain: sharp as hell, burning, and made worse with full or deep breaths. Hurt with shallow. Spouse thought I was having a heart attack and we went to the ER.

I was pretty confident I was not having a heart attack, but was shook up the pain wouldn’t subside.

ER ran my first ever CT scan and treated the pain, which was still dull and achey upon discharge. While there was no reason for the pain I was in, a mass about 5cm was incidentally found.

Edit: pain in my right shoulder was gone within 36 hrs. We suspect phrenic nerve referred pain.

Hearing the ER physician say I had a tumor in my chest was a surreal experience. He called three different specialists and referred me directly to a thoracic surgeon.

A week ago I had a surgical biopsy. Unfortunately the tumor is not in an easy to access area, requiring full surgery (including lung deflation). It was a robotic assisted surgery, so I have three incisions plus a cut for the chest tube (probably the worst part of surgery).

I have felt completely asymptomatic overall. Bloodwork is normal. PET scan showed the tumor and at least one lymph node were hyperactive.

Never had any complications for my health.

I feel fine.

Not so fine now that I’ve had surgery with a complication, but I’m still so shell shocked that my entire life has been flipped upside down.

Late 30s female. Waiting on the oncology referral. Guessing I’ll have EPOCH?

Sounds like PMBCL is pretty rare among lymphoma, but I’ve appreciated reading other experiences here.