Large B-cell lymphoma

ashsaj

Evarista said:

Body pain or bone pain?

Hi Ashsaj, sorry to hear about your dad; hopefully he is tolerating the chemo OK otherwise.  About the severe body pains 6 days after the end of chemo: did he get either Neulasta or Neupagen after the chemo?  One of these is typically given within 48 hrs of finishing a round to boost the white blood cell count.  They are notorious for causing bone pain, which can be quite severe.  Other than pain killers (assume he was told to use acetomenophen as opposed to aspirin or ibuprofen), many people report that over-the-counter Claritin (loratadine) can be very helpful.  I was completely knocked out with pain after my first round of chemo and my clinic recomended this. It did the trick in all subsequent rounds (DA-R-EPOCH).  Ideally, start a few days before the Neulasta/Neupagen shot. Why this helps is unclear, but if you google "neulasta bone pain", you will find many, many anecdotal reports by people who have tried it. Note that it needs to be loratadine, not any other anti-histamine.  Generic is fine.

Also please note that I am not a physician and any meds that your dad plans to take should be checked with his medical team first. Good luck with it and I really hope he can find some relief.

Thanks alot Evarista for your

Thanks alot Evarista for your kind words, 
Yes the pain started after the second Neupagen shot, the days are better but the nights are getting worst - recommended medical team today - they have'nt suggested Claritin as of yet - i will discuss it with them today. 
Moreover he has not experience any nausea for first 5 days - but as soon as the predisolone has stopped - he has been experiencing severe constipation and nausea issues - is this a normal behavior on 6th day of chemo? has anyone experience this ?  

ashsaj

Pleural Effusion and chest pain

Hi all, My dad who has been sufferring from DLBCL, his recent xrays shows that he has pleural effusion and thats been increasing - he has only gone from first round of chemo and its his 7th day.
is this plueral effusion normal? he has pain in chest as well. do they need to extract it ? or is it treatable via chemo?
Anyone having any experience with this please do share.   

lovefamily

Nadir after Epoch for Diffuse Large B cell

Getting ready for round 5 of 6 and have still not reached nadir...or should i say that it has not been captured at the time of the blood testing.

Anyone else had this experience? Dose has been increased by 20% round 3 and 4.

 

NJ Bob

R-EPOCH treatment

I have completd four. The fatigue factor seems to be cumulative as no energy now. Anyone take anything to help?

ashsaj

Forehead sweating at night

Hi, my dad in his second week of R-chop has been experiencing forehead sweating for past 2-3 days. 
i am hell worried as the PET initially shows high metabloic activity in his brain as well. but the recent CT scan done shows no evidence of lymphoma in brain . i have'nt contacted the Oncologist yet, but the med team at hospital said this is due to excessive weakness. Can someone please shed some light on it. if some one has experienced it or not?

Sandy Ray

ashsaj said:

Forehead sweating at night

Hi, my dad in his second week of R-chop has been experiencing forehead sweating for past 2-3 days. 
i am hell worried as the PET initially shows high metabloic activity in his brain as well. but the recent CT scan done shows no evidence of lymphoma in brain . i have'nt contacted the Oncologist yet, but the med team at hospital said this is due to excessive weakness. Can someone please shed some light on it. if some one has experienced it or not?

Sweating

I have never shown any activity on my PET scan above my neck. I did have head sweats during treatment. Looked like I had been standing in the rain. I would not read to much into the sweat coming from the forehead to indicate location of Lymphoma or even presence of Lymphoma. My Oncologist said the Chemo affects our hormones and other things as well. I had 6 treatments of RCHOP and 4 spinal treatments of methotrexate Chemo.

Hope things go well with your Dad.

Sandy Ray 

Evarista

lovefamily said:

Nadir after Epoch for Diffuse Large B cell

Getting ready for round 5 of 6 and have still not reached nadir...or should i say that it has not been captured at the time of the blood testing.

Anyone else had this experience? Dose has been increased by 20% round 3 and 4.

 

Not reaching nadir

My understanding is that not having a super-low nadir does not mean that your chemo is not working! Remember that your "nadir" is just your low point and that everyone's will be different.  The whole point of "dose-adjustment" (the "DA" in DA-R-EPOCH) is to reduce chemo when a patient's immune system handles it poorly and to increase chemo when a patient's immune system tolerates it well.  A not-low nadir mean increased chemo, so more ammunition in a sense.  Hang in there...You're almost finished.  Good luck.

Evarista

NJ Bob said:

R-EPOCH treatment

I have completd four. The fatigue factor seems to be cumulative as no energy now. Anyone take anything to help?

Low energy

Definitely my experience as well.  Rounds 4 - 6 brought me seriously increased fatiigue. I didn't take anything specific for it, just tried to keep to a healthy diet to the extent that I could (protein!) and was as physically active as I could be throughout.  Walking or at least sitting in a chair while in the hospital and daily walks when home. Sometimes all I could manage was from the living room to the bathroom, but even that counts.  Hang in there.

Evarista

ashsaj said:

Forehead sweating at night

Hi, my dad in his second week of R-chop has been experiencing forehead sweating for past 2-3 days. 
i am hell worried as the PET initially shows high metabloic activity in his brain as well. but the recent CT scan done shows no evidence of lymphoma in brain . i have'nt contacted the Oncologist yet, but the med team at hospital said this is due to excessive weakness. Can someone please shed some light on it. if some one has experienced it or not?

Side effects

Hi Ashsaj.  Sounds as though your dad is experiencing all the side effects...Welcome to my world .  So:

1) pleural effusion: I was treated with diuretics on Day 3 & Day 4 of each round.  He may need to continue some at home, but this needs to be managed by his medical team to make sure that he doesn't end up with other problems (low sodium, for example)

2) Constipation: pretty much everybody has this issue, because the vincristine in the chemo slows intestinal motility.  This is just something that he need to stay ahead of (with your help): stool softeners before, during, and after (if needed) each round, fiber intake, drink water, and be as mobile as possible. Look back up this thread for some very specific suggestions and dealing with this very common side effect.  Be sure to check with his doctor before he takes anything though.

3) Prednisone withdrawal: just part of the package and has to be gotten through.  Symptoms seem to vary; my worst was excrutiating sleeplessness.  Should resolve after about 5 days.  He should be reminded to keep up his fluid intake to flush both the prednisone and the cytoxan from his systemn(but don't let him go overboard with it)

4) Night sweats: nothing to add to SandyRay.  I had both night sweats and rigors, but no indication of brain tumor. 

Hopefully, things will get better for him as he moves through this.  Best of luck.

ashsaj

Sandy Ray said:

Sweating

I have never shown any activity on my PET scan above my neck. I did have head sweats during treatment. Looked like I had been standing in the rain. I would not read to much into the sweat coming from the forehead to indicate location of Lymphoma or even presence of Lymphoma. My Oncologist said the Chemo affects our hormones and other things as well. I had 6 treatments of RCHOP and 4 spinal treatments of methotrexate Chemo.

Hope things go well with your Dad.

Sandy Ray 

Spinal Treatments

Hi Sandy Ray, 
thanks for your response, as observed he was experiencing it due to excessive weakness or may be due to low sugar levels. as his diet is getting better the sweat on forehead which appears due to movement or randomly is getter better day by day. 
One more thing can you please explain a bit about the spinal treatments? as my father's bone marrow is also effected with cancer

Ayesha Sajjad

ashsaj

Evarista said:

Side effects

Hi Ashsaj.  Sounds as though your dad is experiencing all the side effects...Welcome to my world .  So:

1) pleural effusion: I was treated with diuretics on Day 3 & Day 4 of each round.  He may need to continue some at home, but this needs to be managed by his medical team to make sure that he doesn't end up with other problems (low sodium, for example)

2) Constipation: pretty much everybody has this issue, because the vincristine in the chemo slows intestinal motility.  This is just something that he need to stay ahead of (with your help): stool softeners before, during, and after (if needed) each round, fiber intake, drink water, and be as mobile as possible. Look back up this thread for some very specific suggestions and dealing with this very common side effect.  Be sure to check with his doctor before he takes anything though.

3) Prednisone withdrawal: just part of the package and has to be gotten through.  Symptoms seem to vary; my worst was excrutiating sleeplessness.  Should resolve after about 5 days.  He should be reminded to keep up his fluid intake to flush both the prednisone and the cytoxan from his systemn(but don't let him go overboard with it)

4) Night sweats: nothing to add to SandyRay.  I had both night sweats and rigors, but no indication of brain tumor. 

Hopefully, things will get better for him as he moves through this.  Best of luck.

Constipation issues

Hi Evarista, how are you?
thanks for your kind words, as observed his night sweats are getting better, the forehead sweating as observed was due to weakness and low blood sugar levels indeed and was better today, plueral effusion is now limited to one lung only, 
and his sleep patterns are getting much better as well.  but constipation its not getting sorted, he is eating small meals at regular intervals but the constipation issue is still there, also the low sodium issue, but med team has not recommended any medication yet, as they said its not severe enough. He has been given some antibiotics for his healing (as chemo was started too soon after VATS - biopsy done from mediastinal mass) and pain in right side of his chest. which causes disturbances in stomach, and he is also isrritated due to constipation. i will look onto back threads to find something useful and home made to be effective in treating this.

 Regards, 
Ayesha Sajjad 

 

Sandy Ray

Spinal Chemo and also Constipation

The spinal Chemo or IT Methotrexate is given when there is Lymphoma suspected to be or to move to the CNS central nervous system.

Mine was given as a precaution because of where some of my Lymphoma was showing up. I do not believe bone marrow involvement is an indication of this. There was never any indication it was in my CNS just a precaution.

Constipation is a real problem. Especially when you are weak and beat down with fatigue from Chemo. I am not a medical professional so I can only tell you what I used and what worked for me.

First let me say that  I read cautions against using a fleet enema when your immune system is compromised. On a couple of occasions I just needed things to get moving and so that was what I did . However, my first line of treatment that seemed to work pretty well was 3 Colace and 2 Senekot every night before bed. I also tried to eat things early in the morning that encouraged me to go. Like bacon and eggs Etc....  What was odd was the first 4 treatments I had to stay on it or it was too late . However on treatments 5 and 6  had to be careful because sometimes instead of constipation I had diarrhea. I just medicated myself as necessary. I usually took the meds for constipation the day of treatment and for about 6 days then everything returned to normal until the next treatment.

Again I am not a Dr or medical professional. Just sharing my experience with you. Always ask your physician if there is any doubt.

Sandy Ray

 P.s.  Lots of fluid a must !

Evarista

ashsaj said:

Constipation issues

Hi Evarista, how are you?
thanks for your kind words, as observed his night sweats are getting better, the forehead sweating as observed was due to weakness and low blood sugar levels indeed and was better today, plueral effusion is now limited to one lung only, 
and his sleep patterns are getting much better as well.  but constipation its not getting sorted, he is eating small meals at regular intervals but the constipation issue is still there, also the low sodium issue, but med team has not recommended any medication yet, as they said its not severe enough. He has been given some antibiotics for his healing (as chemo was started too soon after VATS - biopsy done from mediastinal mass) and pain in right side of his chest. which causes disturbances in stomach, and he is also isrritated due to constipation. i will look onto back threads to find something useful and home made to be effective in treating this.

 Regards, 
Ayesha Sajjad 

 

Help with constipation

Glad to hear that things are getting better.  For at-home management of constipation, the following is a recipe that we were given many years ago by our Geriatrics clinic for our elderly parents (who struggle with this issue also).  You need a good, clean blender.  If you do not have a blender, you can grind the cereal with the back of a spoon.

In equal parts, blend 1) fiber cereal (do this first to make a powder); 2) applesauce; 3) prune juice.  Keep refrigerated & make fresh weekly.  One to two heaping tablespoons each morning.  I did this religiously during my chemo after my first miserable round and it helped immeasureably.  IYou may find that he swings the other way to diarhea for a day or two, so be prepared for that.

As with all recommendations you may find here:  we are not medical personnel and anything like this should be checked out with his doctor first.

lindary

constipation

I have always had problems with constipation so when I was reading up on the R-Chop treatment I checked on ideas to handle constitpation. I started stool softner the night before chemo and continued every night for 4 - 5 day. I drank 2 - 4 liters of water a day for a week, starting on chemo day. I also had a glass of apple jouce each morning with breakfast. A favorite snack was Fiber One chocolate brownies. (I still eat these every other day.) I would back off on most of this by the 7th day, except for the daily apple juice. 

Justiny35

Bone broth with collagen.

Bone broth with collagen. Great source of protein and helps with constipation. It has alot of nutritional value including boosting your immune system. They have different kinds such as bone broth with tumeric, vanilla flavored, or chocolate flavored, etc. Google bone broth with collagen and you'll see. Drink it 3 times a day. I prefer mine with coconut milk or almond milk instead of water. You can also put it in your coffee or smoothies.

ashsaj

Low grade fever at night - same time every day

Hi my father being diagnosed of NHL stage 4 - and given the first R-chop treatment has been experiencing low grade fever ranging from 99.0 to 100 at max at night around 11 to 1am every night, the fever break down in an hour or so usually by itself with mild sweats on his forehead neck and back - this started in third week of chemo. 
Is this a sign that cancer is reappearing? 
Has anyone experienced this kind of fever pattern before? 
Any suggestions would be highly appreciated 

Rexmax

Pet update

Ins denied my pet scan twice even after Dr spoke with them insurance said it wasn't medically necessary. I did 6 cycles of R-chop so I am confused as why it was denied. Dr. now submitting for Cat scan. Anyone else have this issue? Now wondering if my maintenance will get approval. Will keep all informed. Hope all is well with all.....

Evarista

Rexmax said:

Pet update

Ins denied my pet scan twice even after Dr spoke with them insurance said it wasn't medically necessary. I did 6 cycles of R-chop so I am confused as why it was denied. Dr. now submitting for Cat scan. Anyone else have this issue? Now wondering if my maintenance will get approval. Will keep all informed. Hope all is well with all.....

PET refusal!

Wow..I am really surprised by this.  No question that Medicare covers at least one post-chemo PET, so very confused as to why your insurance would not cover it.  Could it be a timing issue?  I believe that you said that your last round of chemo was Sept. 21.  If that's the case, you should not be "eligible" for a PET until late October (because of the Neulasta/Neupogen).  There should be some mechanism for appealing this decision, but really unfortunate that you should have to fight it when you are probably still feeling so done-in by the chemo. Hope that something can be done about this.

Rexmax

Evarista said:

PET refusal!

Wow..I am really surprised by this.  No question that Medicare covers at least one post-chemo PET, so very confused as to why your insurance would not cover it.  Could it be a timing issue?  I believe that you said that your last round of chemo was Sept. 21.  If that's the case, you should not be "eligible" for a PET until late October (because of the Neulasta/Neupogen).  There should be some mechanism for appealing this decision, but really unfortunate that you should have to fight it when you are probably still feeling so done-in by the chemo. Hope that something can be done about this.

Pet denial

We actually have blue cross/blue shield. I didn't have neulasta only 6 cycles R-Chop however after 3rd cycl Pet scan according to Dr he said it was excellent except for a tiny residual and when he submitted this Pet Scan the diagnosis was for Follicular and no mention of the Large B Cell. Orginal diagnose was 90% Large B Cell and 10% Follicular. Right now hoping insurance will approve Cat Scan. Will update...

Evarista

Neulasta or ???

Did you not get anything to boost your white blood cell count after each round of chemo?  Usually given 24 to 48 hrs later...?  BC/BS is my supplement and they definitely picked up the portion that Medicare did not cover.