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Just found out DLBC. Looking for tips.

Beanstalk39
Posts: 2
Joined: Aug 2020

Hello everyone. I found this site looking for information to prepare for our journey ahead.

This week I just found out my mother was diagnosed with DLBC on the pancreas. We initially got the terrible news that there was a tumor on the pancreas which means game over. Spent 2 days sleepless thinking how it might be only a few months left with my mother. But I guess with DLBC we got "lucky" in a sense. My mother lives with me and is the cornerstone of our family. I'm looking for tips on how to prep for her journey through RCHOP. I know it depends and each person has a different experience with it. 

We will try to do a thorough cleaning before she comes home. With RCHOP are you basically home bound to try and prevent sickness and infection? I mean we more or less have been with the pandemic but do we need to lock it down even further?

Any issues with stairs? Should I plan for her to not be able to climb stairs for the first week after chemo? Or for the whole treatment as it seems like the treatments are progressively tougher.

I know dietary issues vary and we'll try to be prepared with a variety of foods. 

 

I can't think of what I should be preparing for with so much coming at our family right now as we're still in discovery mode but treatment will begin within a few days so I'm trying to be prepared as much as possible. Please share any and all helpful tips for the family. 

 

 

 

Lym999
Posts: 34
Joined: Feb 2020

I am sorry to hear this, but look up it could have been a whole lot worse. I am not sure how old your mother is but I just went through 2-R_Chop from last Nov into March 2020 for Large Diffuse B-Cell. I can only tell you from my experience but it went way better than I had imagined. I e thought I might be bedridden from hearing from others on Chemo but it was far from that. The only real problem I had was with Neourapathy and Constipation. It didn't stop me from doing anything I like and if your mother is in good shape she shouldn't have a problem with any steps. In regards to eating there were certain foods, I could no longer eat. It definitely changes your taste buds and it might be more trial and error on what she might like to eat and what she won't eat.  The prednisone can make you a bit jumpy also. Feel free to ask more if you like. I know there are plenty of others on here who can also help you.

 

 

John

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3495
Joined: May 2012

Beanstalk,

As John (Lym) noted, the best indicators of how your mom will do is her age and overall health.  A person who is 'youngish'  (under 65 or so) and in good health normally will not have trouble walking on R-CHOP, and can ordianarily get around fairly well.   The universal effects for nearly all is severe fatigue (expect her to sleep a lot and have bad and good days), and general weakness.   Prednisone is miserable, and makes most users hyper for a time, but then they crash, devoid of energy.

If her disease is highly localized, and only on the one organ, that is a positve; it is it is widespread and on an organ, it is likely a tougher fight.

Chemo effects are cumlative, so her doing well after one or two infusions do not mean that she will do well after additional treatments, so she will demand continuous monitoring.   Certainly, today, on R-Chop with lymphoma, I would not let an older adult venture off at all, except to medical appointments.

Evarista's picture
Evarista
Posts: 292
Joined: May 2017

and that I wish I had known about (I was 68, DLBCL, R-EPOCH): 1) constipation: do not underestimate this.  Stay ahead of it with whatever her medical team recommends (stool softeners, laxatives); 2) exercise: as much as she can as often as she can.  It will help with her overall wellbeing and with constipation.  3) Insomnia: be ready for this with audiobooks, puzzles, whatever. Not sure about the prednisone in R-CHOP vs. R-EPOCH, but I was up wandering the house in the wee hours nightly.  If you are concerned about her safety when up and alone, take that into consideration for sleeping and lounging arrangements. Going down stairs unassisted may be more of a problem than going up. A beside commode may also be appropriate sometimes. Make sure she always has a bell or something close at hand to call for assistance. 4) Food: I lived on frozen Lean Cuisines, but find what works for her within the dietary guidelines. 5) Neulasta bone pain: if her team agrees, loratadine (Claritin or generic) to prevent.  Best of luck to her.

Lym999
Posts: 34
Joined: Feb 2020

Evaristo,

I learn real quick about how bad the Constipation had been. I truly underestimated it though was told it could occur. Trust me I took Marilax with every treatment after that. I exercised as much as I could while going through chemo. I tried to walk between 10,000 and 15,000 steps a day. It helped a lot with the Chemo and would recommend anyone who can exercise to do so as long as the doctor okays it. The prednisone was interesting. I had to take 100mg a day for five days and it gave me a huge energy boost but as you said kept me up most of the night. In regards to food as I was all over the place. Everything I ate for a good two weeks after a chemo treatment tasted extremely bland. I guess there could have been worse things to happen.

 

John

Beanstalk39
Posts: 2
Joined: Aug 2020

Boy it's been a ride since I posted. There was some uncertainty after I posted but I think they have what they need now. We have a few more tests to do but are proceeding with RCHOP. We are thankful for all the help and support of the medical staff and cancer survivors who have spoken to us thus far. Now we anxiously await to see how she responds to therapy. 

Mason's picture
Mason
Posts: 6
Joined: Aug 2020

Consider short course of anticoagulation for duration of chemotherapy

JDinAz's picture
JDinAz
Posts: 8
Joined: Aug 2020

1.  The  prednisone makess you superman -- until you crash.  I found that sleeping pills counteracted that some so I wasn't up after 2-3 hours of sleep ready to take on the world.

2.  Clariton (or generic) before Neulasta makes the bone pain a lot more tolerable.

3.  I had a unique  job where I was flown into the Grand Canyou with supplies and a crew of 3 others to work with native fish.  I managed to do 2 trips (11 days each) between  R-CHOP 2&3 and 3&4.  It may sound foolish, but my oncologist encouraged  it.  Each trip involves hiking about 5 miles a day with all living  outdoors (tenting it).  I'm very glad I worked.

4.  Tastes do change.  Aviod your favorite foods.  I had lobster during chemo.  Tasted like crap.  FInally, 7 years later, lobster tastes good again.  Spices burn -- at least they did for me.  I went from liking the hot picante and salsa to avoiding salsa totally.  Even some spaghetti sauce burned my mouth.

5. SKin care & mouth care -- Stay on it and it should be OK.  Due to me working, my skin got out of control.  I used CeraVe Cream.  Found lotions to not be good enough.  For mouth rince, I use baking soda & salt (about 1/4 t each) in a little tepid water.

Wishing you and your mother the very best as you head down this road. 

PS I did R-CHOP at age 65.  Still going at 72

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