Just found out DLBC. Looking for tips.

Beanstalk39
Beanstalk39 Member Posts: 5
edited August 2020 in Lymphoma (Hodgkin and Non-Hodgkin) #1

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. 

 

 

 

Comments

  • Lym999
    Lym999 Member Posts: 43 Member
    #2
    Your Mother

    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
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #3
    Mom

    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
    Evarista Member Posts: 336 Member
    #4
    Things to stay ahead of

    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
    Lym999 Member Posts: 43 Member
    edited August 2020 #5
    The Side Effects

    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
    Beanstalk39 Member Posts: 5
    edited August 2020 #6
    Thank You

    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
    Mason Member Posts: 7
    edited August 2020 #7
    Consider short course of

    Consider short course of anticoagulation for duration of chemotherapy

  • JDinAz
    JDinAz Member Posts: 7
    edited August 2020 #8
    Things I wish I would have known prior to R-CHOP

    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

  • Beanstalk39
    Beanstalk39 Member Posts: 5
    edited December 2020 #9
    Follow up

    Hi I wanted to post a follow up after completing RCHOP therapy incase it might help others in the future. 

    First we had 6 treatments of RCHOP spaced approximately 3weeks apart. We did have one session delayed due to labs showing she wasn't ready. They did modify the dosages slightly each time based on her labwork. We did end up pulling the vincristine during one of the sessions due to neuropathy in her hands and feet. The neuropathy has since gone away for the most part. We had PET/CT scans after every 2 sessions and each time progress was good, the deauville score was 3 at the highest. Our last scan is actually tomorrow and I'm optomistic that it'll be fine. She did have kidney/liver function problems so they did all the scans without contrast. The oncologist said it makes it harder to show us but he could still read the scans without contrast. 

    We did seek a second opinion just to verify we were doing the right thing. The one thing that was a little troublesome here is that the second opinion said the biopsies that were taken did not clearly show DLBC lymphoma but it also was clear it was pancreatic adenocarcinoma. So we just progressed with treatment with our primary oncologist. It sounds like they need pretty large tissue samples to clearly determine DLBC lymphoma, maybe something the needle biopsies just arent sufficient for. 

    Complications we had:

    Shortly after the first treatment my mom developed a fever. She was hospitalized and gave a bunch of iv antibiotics and then sent home. They never found the issue. A few weeks later after the second treatment it happened again and this time they determined she had c.diff so we did another deep clean at home and she was on vanco for 2 rounds. This seemed to clear it up but she continued to have loose stools and an urge to go more often over the duration of treatment. Following her last session she again had a fever and was hospitalized with a bunch of antibiotics and then sent home after a few days.

    She had issues with fluid intake which caused kidney/liver issues. I think she just normally doesn't drink alot of water but then with the treatment it was very apparent since she was constantly getting blood work done. Even with monitoring at home I wasn't able to get her to drink enough water. This eventually led to twice a week iv fluid sessions at the clinic. 

    She does have black nail beds but we're told those will clear up.

    No real issues with mouth sores but we started the salt rinse right away. She had some tenderness at times but overall no issues here. She was prescribed some "magic mouth wash" but she never had to use it. 

    No issues with bone pain with the neulasta shot. She got the shot, not the patch if that makes any difference. 

    Home life:

    I think this is where I had the most concerns intially but it ended up being okay. She was able to get around for the most part. The fatigue after each session was very apparent. She would sleep for the whole day after we got home and then she would slowly recover. The few days before the next session were always her best days, only to get beat down again by the chemo. She has shrunk down quite a bit. Her legs are very weak from just laying around all the time. We have to work on building back her endurance but she is still very mobile.

    Food was okay for the most part. Some days she had better appetites than others but overall not alot of issues here. 

    With COVID and the colder weather trying to exercise was difficult. We did go for walks initially but as it got colder she didn't want to be outside. We dare not go to malls or anything so she would just do laps around the dining room table or in her room. Probably not enough activity but it was better than nothing. 

    I guess we got through the easy part. Now we are just monitoring and waiting for anything else to pop up. I think that is the hard part, not knowing whats to come. 

    For anyone reading this looking for help like I was a few months ago I think the biggest tip is just to be ready to be there. Everyone obviously responds to their treatments differently but either way its a long journey. Have a support structure. For those that have to go through this alone I can only imagine how tough it would be. I saw so many people go to chemo alone and wait for taxis. My mom was fortunate to have her whole family supporting her. I took on the brunt of the day to day activities but other family members helped with various things behind the scenes such as daily phone calls with words of encouragmenet and to cheer her up, food prep, etc.  All of the random dr visits, labs, scans, waiting at the office, waiting for test results, etc etc. its all very time consuming and emotionally and physically draining but support your loved one and you'll get through it in time. 

     

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