Hair Loss and other things at the beginning of RCHOP dosage

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I'm reaching out tonight to share our experiences as relatively newly diagnosed Germinal Diffuse Large B-Cell Lymphoma (Late Stage III/Early Stage IV) sufferers.  My husband, after having a baseball-sized tumor in his small intestine surgically removed on April 21st, 2018, was given this diagnosis and has had one round of RCHOP.  We are due for #2 this coming Thursday.

We were given the "prep" talk with the Oncology PA before beginning therapy who rattled off all the drugs and what they COULD do to people . . . much like the big Pharma commercials that list every single, cotton-pickin' thing a particular drug can do to a person from losing their hair to turning their fingernails purple.  Yet, what was missing was the information we were able to piece together from folks on this site (who are truly God's children) who shared what they saw and felt at this early, paralyzing stage of things.  I would like to, also, share what we saw and what we felt so that others can better prepare who are new to this unwelcome experience.  

My husband was given Round #1 of RCHOP on May 24th.  He had a reaction to the "R" in that acronym (Rituximab) . . . about an hour and a half into the IV drip (only about a 1/4 of the way into the dose).  He developed a small rash on the inside of his right arm and had small dots and streaks appear simultaneously on his abdomen.  They stopped the drip, gave him some more Benadryl, and started up again with little else to report after being there from 7:45 a.m. to 4:30 p.m.  Not much of anything else happened these past three weeks (other than some, intermittent fatigue that hit him for a few minutes at a time, the first few days after).  Definitely troublesome, yet not debilitating.

Then, I started seeing his hair get softer and softer this past week and a half.  The hair on his arms seemed to disappear and then, on this past Saturday (Day 16 after 1st hit), he woke with head/scalp pain.  When he got up, I saw "trails" of hair loss circumferentially around his head that didn't seem all that severe after he showered.  BUT, on Day 18 (this past Monday) evening, he bent over his bathroom sink and was able to run his fingers through his hair and large amounts of hair just fell out.  His underarm hair is also gone.  This morning (Day 19) . . . after he showered . . . more of the same.  We had had an appointment scheduled with my hair stylist (who ended up coming out to our house today) to take enough of what was left so that it didn't leave mounds of it everywhere.  She and I were ready to take all of it; but, Terry is holding out hope that the rest will survive.  We'll see.  But, it doesn't appear that it will and it would have looked better if all of it was taken off.

I'm sharing this information tonight with all of you because I wanted to try and spare any of you in the same predicament we're in the uncertainty of what this is like and what you will most likely face.  It, for me, is one of the hardest parts of all of this, as it will be a constant reminder of our fight, everytime we look at each other and when he looks in the mirror.  We have a strong marriage and we've been through a lot together (read my About Me story if you're interested), but my husband is extremely frugal with his emotions which has made this exceptionally hard on me . . . me always being the realist and the factfinder and problem solver in our marriage.  This situation, though, has cut me to the core and I'm finding myself feeling isolated and judged for sharing my emotional journey with others.  I have my place in hell through this, as does my husband.  But, if I had advice to offer anyone looking for any . . . it would be to share how your feel with whomever you love and ask for their unmeasured support.  AND question your care team at the clinic and hospital you frequent.  Ask them well-thought out questions and write everything down.  Keep a journal of sorts with each of your experiences, thoughts and fears . . . Save the tears for your ride home from treatment.  Doctors and medical professionals, I've discovered, don't want to deal with them.  Many of them would rather you scour the internet and friends for support and information.  A lot of them would prefer you out of their face and into "therapy" of some sort or offer you medication to erase the emotion and fear.  Been there, done that.  Although it is a great help to some, it was a complete loss of time, money and brainpower I didn't have the resources to lavish myself with.  I needed . . . I NEED to focus and utilize the few resources of time and energy into caring for my husband and myself through times like these.

I hope my experiences can inspire and enlighten anyone else living this hell.  I share them with anyone, like me, searching for answers and help dealing with all of this.

Take care,

Afraid Again (aka:  Dawn)