Diagnosed with Diffused large B cell lymphoma

CL2019 said:

Chemo - RCHOP - side effects

Hello,

I am a 51 year old female recentlay diagnosed with Primary Splenic Diffuse Large B Cell Lymphoma.  I had my spleen removed last month, and had my first chemo treatment last week.  I am still trying to figure out what to expect in regards to side effects.  Has anyone experienced "chemo brain" this early in their treatment?  I am not sure if this is what I experienced yesterday, but I felt spaced out, was not able to to concentrate, and my mind racing uncontrollably about I was not able to turn off these thoughts.   I also cried several times throughout the day.    If so, I would appreciate any information you are willing to share about this and if it continued, or was it just occasionally I would love any tips on dealing with this as well.  I am a little bit familiar with Meditation / Mindfulness exercises and plan to do more of this.  

I would also love any other insights or recommendations to help with managing physical side effects and other challenges.  

Thank you,

 

As someone that who has recently finished 6 sessions of RCHOP-21 and IGRT for DLBCL I can only give you my experience. I'm now about 6 months post-chemo and about 4.5 months post radiation. I gained weight during my Chemo (about 10 lbs), I suspect from the Prednisone, slept a lot, went through a lot of mental stress, lost ALL of my hair, and thankfully am now in complete remission. After the Chemo I had partial response and after followup RAD had complete response. The last year seems to have taken about 5 years but in reality the time passed pretty fast and I am hopeful that going forward things will continue to improve. The diagnosis of Cancer is a shocker and in my case the mental effects are as significant as the physical ones. My stamina is getting better and although my CBC still shows slight anemia I'm feeling better both mentally and physically.

Hang in.... things will get better. You will be better and feel better!

Peace and Love

CL2019 said:

Chemo - RCHOP - side effects

Hello,

I am a 51 year old female recentlay diagnosed with Primary Splenic Diffuse Large B Cell Lymphoma.  I had my spleen removed last month, and had my first chemo treatment last week.  I am still trying to figure out what to expect in regards to side effects.  Has anyone experienced "chemo brain" this early in their treatment?  I am not sure if this is what I experienced yesterday, but I felt spaced out, was not able to to concentrate, and my mind racing uncontrollably about I was not able to turn off these thoughts.   I also cried several times throughout the day.    If so, I would appreciate any information you are willing to share about this and if it continued, or was it just occasionally I would love any tips on dealing with this as well.  I am a little bit familiar with Meditation / Mindfulness exercises and plan to do more of this.  

I would also love any other insights or recommendations to help with managing physical side effects and other challenges.  

Thank you,

 

Your description sounds (to me) more like the dread prednisone side effects than true chemo-brain.  The good news:  it's transient.  The less good news:  you are likely to experience it again with each round of chemo.  Try to find things that soothe you, especially since insomnia can get into the mix as well.  I found sleeping with audiobooks running continously at low volume helpful.

Agree with Shady that starting a new thread when you have the energy would be a good idea.  More folks will see and respond.  Hang in there.

Iluvlucy said:

Losing my hair

Was, and is a blow to my dignity and identity.  For some it may not be as big of a deal, but to me, it still makes me angry. Yes, I am alive, yes, my treatment was successful.  When people say to me, "It's just temporary" or "It'll grow back" they don't get it.  I don't need others to know my business and the hairloss is a dead giveaway.  I believe that with all if the $that gets thrown at cancer research, they could come up with something that allows you to keep your hair, or find other drugs that don't cause alopecia.  If they are going to use 1950's antiquated "hand grenade" drugs, they can come up with a medication or treatment that would allow me to keep my dignity. I hate it when people dismiss my feelings of loss of control and dignity by "informing" me that it's tempirary, or only hair.  I tell my family to address the emotion and not try to educate me.  I am not ignorant, just distressed. My hair is coming back in.  I am 6 weeks since my last RCHOP.  Its gray and fuzzy.  I look forward to the day when I don't feel the need to wear caps.  Hate my wigs, won't wear them unless I must.  I get compliments on my funky styled caps that I got on Etsy and Amazon.  I find little joy in the compliments but it is my reality at this moment. 

I know what you are saying.  My mom is going to have chemo soon and everyone keeps saying it's only hair, it will grow back,  it's so hard for her and I understand the stress and pain of losing your hair, it's not trival it's a hard reality and difficult to see yourself without hair.   I'm so sorry people don't understand this, it's hard enough dealing with cancer and to look at yourself in the mirror and see what else cancer is doing to your life.

  Jesse J 

dtat67 said:

RCHOP

As someone that who has recently finished 6 sessions of RCHOP-21 and IGRT for DLBCL I can only give you my experience. I'm now about 6 months post-chemo and about 4.5 months post radiation. I gained weight during my Chemo (about 10 lbs), I suspect from the Prednisone, slept a lot, went through a lot of mental stress, lost ALL of my hair, and thankfully am now in complete remission. After the Chemo I had partial response and after followup RAD had complete response. The last year seems to have taken about 5 years but in reality the time passed pretty fast and I am hopeful that going forward things will continue to improve. The diagnosis of Cancer is a shocker and in my case the mental effects are as significant as the physical ones. My stamina is getting better and although my CBC still shows slight anemia I'm feeling better both mentally and physically.

Hang in.... things will get better. You will be better and feel better!

Peace and Love

Your words are encouraging to me!  Glad you are doing well

I just joined this site looking for others' experiences after chemo.  I was diagnosed with DLBCL at the end of last year and completed 6 rounds of chemo on 5-5-2020.  My PET scan in June shows no cancer and I am very thankful.  I think I did well through the treatment as I went into it pretty healthy.  Now, I have such a dry mouth and very sore joints.  I use Biotene for the dry mouth and find it only helps minimally.  I have no idea what to do for the sore joints.  I am in PT, but doing it from home because of the covid-19 surge at our hospital.  Anyone else have these problems after chemo.  Any suggestions?

NE girl said:

Chemo recovery

I just joined this site looking for others' experiences after chemo.  I was diagnosed with DLBCL at the end of last year and completed 6 rounds of chemo on 5-5-2020.  My PET scan in June shows no cancer and I am very thankful.  I think I did well through the treatment as I went into it pretty healthy.  Now, I have such a dry mouth and very sore joints.  I use Biotene for the dry mouth and find it only helps minimally.  I have no idea what to do for the sore joints.  I am in PT, but doing it from home because of the covid-19 surge at our hospital.  Anyone else have these problems after chemo.  Any suggestions?

That you may find helpful.  First of all, congrats on getting through your chemo and doing well with it.  Second, I am not a doctor, just a regular ole DLBCL/R-EPOCH survivor who suffered with the same complaints that you describe.  Be sure to always run things past your medical team before trying. Here's what helped me:

Mouth: 1) absolutely NO foods with "surface" salt, e.g., salted nuts & chips.  Nuts are healthy but you can find UNsalted ones (peanuts, almonds, walnuts) at Aldi's and Costco.  If you need to keep up your sodium, try to get it from foods with "hidden" salt, such as cheese, etc.  2) Ask your doctor about "Magic Mouthwash".  This is a prescription, compounded formulation that contains some variation of Maalox + anti-histamine + lidocaine.  Use ONLY as directed. Some people are allergic to lidocaine, so do be cautious.  Here's a link: https://www.mayoclinic.org/tests-procedures/chemotherapy/expert-answers/magic-mouthwash/faq-20058071  3) If problem persists, ask your doctor about the advisability of a course of acyclovir, as the problem can be related to non-specifc herpes species (NOT the versions that cause routine cold sores or genital herpes).

Joints: keep up the PT.  Took my joint issues about 1.5 years to resolve but they did resolve.

Good luck!

(DLBCL; Dx 01/2017; 6 rounds of DA-R-EPOCH 02 - 05/2017 - currently in remission)