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Lymphoma--"Chemo" Brain

JanetKayke
Posts: 1
Joined: Apr 2018

My dear friend has just completed 3 months from being diagnosed, completing a series of chemo treatments (being hospitalized each time).  She is absolutely scared to death as she cannot formulate her thoughts, doesn't remember where anything is in her house/kitchen, is very fragile having to hold on to someone and is unstable on her feet, needs some help to shower for fear of falling, cannot remember how to to use her cellphone or things she used to do before being diagnosed/treatment.  She remembers close people (family, close friends), but ha a hard time recalling others, has a difficult time forming sentences for conversation, sometimes is accusatory in that she feels others are "against her".  Her husband, who is trying desparately to help her, is having a difficult time getting help.  She is scheduled to see her dr in about 3 weeks, but feels "on the edge" right now and I sure don't know how to help her.  I suggested she list questions she needs to ask her dr, but couldn't do that (so I have helped her do that).  She is most fearful of what could be ahead for her if things "don't come back" to her.  Any suggestions?  From reading the discussions on lymphoma, I don't see this issue mentioned and could sure use some suggestions  Thanks; I admire all of you and your courage.   

po18guy's picture
po18guy
Posts: 839
Joined: Nov 2011

There is no lymphoma drug which crosses the blood-brain barrier. Thus, the cause of CICI (Chemotherapy Induced Cognitive Impairment) seems to be related to how the patient is dealing psychologically with the situation. A cancer diagnosis is traumatic and the treatment can linger on - triggering a form of PTSD. In today's culture, one emotion which is frequently experienced and expressed is that of being in a state of terror. In such a state, the mind and body both go into a certain survival, or "fight or flight" mode. We have heard of the "fog of war." A cancer diagnosis is also a war, but while there are certain similarities to a battlefield, there are substantial differences.

If she is not receiving counseling, it would be an excellent time to consider it. Her physical limitations may be caused by the chemotherapy, but made worse due to the PTSD. The facility where she is being treated can advise on counseling or other therapy during this very difficult time. 

steveja
Posts: 13
Joined: Apr 2017

>> There is no lymphoma drug which crosses the blood-brain barrier.

Not to be snarky but that is just wrong.   Both cyclophosphamide and vincritine - components of the common RCHOP treatement for lymphoma readily cross the blood-brain barrier.

Further cyclophosphamide is often implicated in "chemo brain".

 

>> A cancer diagnosis is traumatic and the treatment can linger on - triggering a form of PTSD

Which fails to explain why cancer pts w/o chemo have less mental impairment than those who do.

 

 

yesyes2
Posts: 545
Joined: Jul 2009

I do agree with Po that many of your friends problems may be due to PTSD.  However, we do not know what your friend's diagnosis or treatment is so giving our insight is a little difficult.  If she has DLBC and possible CNS involvement she would be receiving chemo directly into her spinal column.  If this were the case then she would have chemo directly into her brain which could cause some cognitive problems.  I did not have this treatment but several on this board did and may soon chime in.

I can tell you that during my treatment with RCHOP my ability to concentrate comprehend the written word was nonexistant.  For my reading enjoyment I was reading children's books, not young adult but childrens stories for like nine/ten year olds.  A far cry from the medical journals I was digesting prior to the beginning of treatment.  A fellow NHL survivor in my cancer support group also had this experience.  Everything resolved a short time after treatment.

I also found that the steroids used during treatment caused emotional swings and short temperedness.  So coupled with everything else your friend is experiencing this could play in.  We are not doctors so best all these issues be addressed with your friends doctor.  IFor me if this was happening to my husband I would not wait the 2 weeks to see the doctor but call him first thing Monday morning.  Sounds like she is in need of help as soon as possible.

Finally, she has a wonderful friend in you.  Thank you for asking questions and trying to find solutions.

 

 

po18guy's picture
po18guy
Posts: 839
Joined: Nov 2011

Thanks for the wake up call! I had overlooked that. We indeed do not know the diagnosis or treatment regimen. That would be very helpful - but I still think that psychological factors are producing the bulk of the difficulties. I mean, who wouldn't be forgetful or stammering if they were terrified? That would actually be expected. However, even those who have received intrathecal methotrexate do not necessarily exhibit the behaviors that we have just read about. We are all unique, but based on the limited information available, I am guessing that she is stressing. In this and other forums, a word that recurs repeatedly is "terrified." Clearly, that state of mind will produce cognitive and behavioral deficits that are consistent with "battle fatigue" - PTSD.

What I do notice is that "chemo brain" is reported across the board - in cancers in which methotrexate was not given. However, more info would definitely help. When we hear "non-Hodgkin's Lymphoma", we may think it is a specific disease rather than a category. Type and sub-type, as well as treatment regimens received might help. 

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

”battle Fatigue”  is just one minor cause of the emotional disorder called PTSD, probably less than 2% of cases. It is not a disease, it is an emotional disorder. The most common cause of PTSD is trauma in childhood - poverty, neglect, abuse, bullying. Another cause is traffic accidents and yes “severe illness and subsequent fear of death”. This condition can run through some peoples entire lifetime and accelerate when another traumatic event occurs. It lurks in the background but is always there. In short, you may want to look for the root of her problems and not automatically assume it is solely caused by cancer.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 2864
Joined: May 2012

Janet,

You omit a good many facts that may be relevant here, and most likely are.  But know that we understand -- one initial question to the Board never contains every relevant fact.

How OLD is your friend ?  This is not to suggest anything, but relevant. How clear-headed was she prior to her cancer diagnosis ?  Did she have physical imparement prior to cancer (difficult with balance and such) ?

What is her strain of the disease ?  As was stated above, if it is a CNS (central nervous system) form, that is quite important. CNS lymphomas are quite rare, but are treated differently than most others.  

What is her drug combination ?  Automatic admission to the hospital for her infusions suggets R-EPOCH, but it could be something different (such as is taken with CNS).

PTSD onset is hardly ever instantaneous in onset, but symptoms can manifest very rapidly. It virtually always has a lag time following a trauma.  This suggests more pharmacological involvement. 

I myself was run over by a car decades ago, went into major shock, went blind, and was arrested (unable to breath at all) for a time the first night.  (I woke up able to see the next morning.) I was CONSCIOUS through all of this, speaking to EMS personnel and later the ER doctors.  Was awake when the surgeon thrust in the chest tube.  Staff told me later I was dark purple in the ER at arrival.  Plugged into numerous narcotics immediately, immediate surgeries. Flail chest cavity, pneumothorax (collapsed lung), and much else. Probable head injury, since months later my ear itched, and I pulled out a hunk of windshield glass. Doc said it must have been imbedded under the skin for a time, to have been missed in the hospital.

Within 3 days I was in delirium, or what is termed ICU Psychosis -- a condition way past 'chemo fog.'  I stayed on life support for weeks, smashed on narcotics, in ICU a month. Rehab over a year after discharge. So I have first-hand experiences with this stuff.  After discharge, I years later experienced two additional severe auto crashes. "People lying on the highway" severe....

But it was decades later when I got my two cancers.  Six months of R-ABVD from the first cancer (Hodgkin's). I had severe chemo fog develop over time.  My ancedotal (solely personal) read was that the chemo fog was a different thing from PTSD, but who knows ?  All of this stuff in the brain is inter-related, impossible to isolate completely.  But (1) the inability to concentrate and (2) memory loss are the hallmarks of chemo fog.  I would sit and stare in the distance for protracted periods, as if in a dream or something.  My wife at times had to nudge me to get a reaction, since at times I would not even respond to verbal contact.  What this apparant chemo fog LACKED from PTSD was a fear or startle reaction; there was little or no nervousness in my chemo fog that I can recall. Your friend obviously has significant anxiety for now.

Your friend cannot handle her daily affairs unsupervised. It is good that her husband is with her.

Usually, chemo fog passes months or years after chemo ends; I would say it took two year or so for quality clear-headedness to return in my case. This can be rapid or slow.

Definitely, her symptoms, whatever they are called, demand doctor attention. My read is that it is significant chemo fog, which since she is not finished with applications, will potentially worsen.  There is no "treatment" for chemo fog, since its mechanism of action is not known, even by neurologists.  But stopping the drugs is ill-advised; eliminating the cancer has to be Priority 1 at this stage.  It must just be ridden out.  But an anti-anxiety med is probably overdue for her at this stage.  My oncologist gave me a perscription for Lorazepam (often called Ativan) at our first meeting, without me every asking for anything, or expressing any anxiety.  He suggested, "go get this filled today."

We are all laypersons writing here, just to remind you. None of us is an oncologist, much less a neurologist.  I quip often that "I've had no medical training, just every medical thing."  Incidentally, I later "collected [most of] my marbles."  That is, regained my ability to think.  Many awards in college, an outstanding academic string of accomplishments.  I say this to convery hope, not to sound arrogant.

max

 

Evarista
Posts: 177
Joined: May 2017

Hi Janet and welcome to the forums.  Lot's of good input from the above folks. Let me add that your description of your friend is me one year ago. Her "chemo-brain" is perhaps a bit more extreme, but not a whole lot.  At my worst, I could not stand/walk at all unassisted and was having some hallucinations.  The PTSD analogy is a good one, I think. Putting aside the possibility of CNS involvement (which we do not know about), the effects of chemo plus the lymphoma itself can be severe. But one year later, most of this is gone, I'm walking 3 miles a day, and I currently only deal with residual fatigue, some peripheral neuropathy, and what is more likely age-related forgetfulness (expected at 69).

For her husband: try to get a referral for home physical therapy.  This was absolutely invaluable for me.  Once she's ambulatory, keep her ambulatory.  The forgetfulness is scary, especially in the middle of the night, so anything that can "anchor" her is a good thing; music, nightlight, etc.  Set up a bedside commode so that she does not have to find her way around...I literally was trapped more than once in my 6 X 6 bathroom, because I could not find the door! Showering: don't press her to shower every day. If he can bring in a home-health aide once or twice a week for assistance without upsetting her, great.  If not, twice or even once a week is fine for now.

Things will likely come back to her. As noted, the "edge" may pass as the Prednisone leaves her system. If anxiety is overwhelming, definitely discuss this with her doc.  I'm not sure what meds would be appropriate (calming but not adding to her confusion), but the doc probably knows.  Some of the newer anxiety meds also stimulate appetite, so if eating is an issue for her, they could help with that as well. She is lucky to have your support, so if you can be constant for her, that is wonderful.  Remember (and remind others) not to take offense when she is snapish.  It's not you and she can't help it right now. Best of luck and feel free to ask more questions as needed.

Added note:  You don't mention it, but one thing that may be contributing to her disorientation is sleep disruption.  This is not unlike "ICU psychosis".  Waking up multiple times a night and then at 4 AM unable to go back to sleep.  Figuing out ways to get her on a very regular schedule of night-time sleep and daytime naps (which she will need) may help. Again, this should improve with time, but it definitely took me a while.

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

 

After only two 4-day sessions of chemo I am having minor difficulty with short term recall. SmileI thought I was wrong once but I was mistaken. Have a great week guys!

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

I asked and was told that both of my drugs, cytoxan and fludara can can damage the brain. They may or may not cross the blood-brain barrier intact but they definitely affect the brain. Nitrosureas drugs are unique because, unlike most chemotherapy, they can freely cross the blood-brain barrier. I think that cytoxan in particular may penetrate the blood-brain barrier in some small amount insufficient to be used as an effective brain cancer treatment but fully capable of affecting the brain. Also blood may not be the sole transport mechanism. Good topic. Hope Po and Max have some further info.

yesyes2
Posts: 545
Joined: Jul 2009

Yes cytoxans definitly do have an effect on the brain.  One of the very first studies done on "chemo brain" was done on women taking chemo for breast cancer back in the 90's.  I was treated for my first breast cancer in 1992 and received the cocktail of CMF, cytoxan, 5Fu (fludarabine) and methotrexate.  I also participated in a Stanford study on BC and chemo brain.  In the 90's it was not recognized by the Oncologist, they blamed it all on menopause induced by the chemo.  Things are better now but we still have a long way to go.  We are all canaries in the coal mine.  My chemo brain got better about one year after the CMF but the chemo brain caused by RCHOP lasted much longer.  The treatments really played with my comprehension capabilities.  And my ability to do even simple math problems really was affected.

ShadyGuy, hope you have a wonderful weekend.

 

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

Sounds like I am getting similar therapy to yours. Mine is Cytoxan, Fludarabine, Rituxan. I can definitely see a reduction in some cognitive skills, mainly speed of recall, short term memory and misplaced items. I have an advanced degree in physics and like to think I have good memory and reasoning skills. Now, for the first time in my life, I am using the calculator on my phone to do simple arithmetic In my target practice. Also I always remembered things like phone numbers but now need to look them up. Hoping this is not permanent.

toledotom's picture
toledotom
Posts: 11
Joined: Nov 2011

Yes, It is real. I was involved in a Study at Flower Hospital about 6 years ago. They know R-CHOP regiment therapy will cause it but won't admit it due to litigtion! What else was I going to do? NOT take the protocol and die???  Lmao It is very real CHEMO BRAIN. I could easily Multi-function and do severL THINGS AT THE SAME TIME! NOT NOW>>>>>Undecided I guess having many lapses in memory is one thing keeping us aware we are Cancer Patients in Re-Mission!

ShadyGuy's picture
ShadyGuy
Posts: 209
Joined: Jan 2017

i hope to re-join you in remission soon!

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